One Day At A Time

My office/craft room

2012-01-02T09:29:00.001-06:00

I got my office chair done! I'm pretty happy with it. I love the material! I think you can click on the pictures to enlarge them.

This is my crafting table. The following picture is the end of the same table.

I sorted all of my brads and eyelets by color in these buckets. They were a bit big for what I needed, but I was having a hard time finding the right size and at a decent price! So, this is what I ended up with! I would eventually like to paint the brown wood shelves these buckets are sitting on. What do you think? Brown doesn't look too bad, but I thought white would look better.

Same wall, further down. I have a table on each side of the room, by each of those brown cabinets. The one is my sewing stuff and a table to do bills/office stuff on. The other is for crafts.

I did have enough material left over to make covers for my serger and sewing machine. They are nothing fancy, but will keep the dust off of them. They are the same material as the chair.

2011-12-27T16:12:00.000-06:00

Hello, everyone! I'm sorry I'm so terrible about keeping up on my blog! Lately I've been busy getting my office/craft room painted and organized. I'm so excited about that! That may sound trivial to some people, but when you've been so sick for so long that you couldn't even sort stuff, or even CARE about it, it's a big deal! I created a pretty space to create, dream, work, and relax! Crafts are relaxing to me. I enjoy them so much! Most everyone that knows me, knows I use to do lots of crafts and when I got really bad with my Cushing's Disease, all of that fell by the wayside! I'm VERY happy to say I am now feeling good enough to start back on crafts.

I have not done scrapbooking for YEARS! I hope to get all of my pictures into albums at some point. Right now, I have a new craft hobby. Making cards! I didn't think I'd really like making cards much, but I love it! It's so much fun! My goal there is to get various cards made ahead of time, that I can grab when I need one. It gives me something to do, and it's so fun creating. It does take some time, so I'd rather spend plenty of time, than doing a rush job because I need one right now! Those never turn out well. It takes time to be creative and decide what you want! LOL!

I LOVE, LOVE, LOVE my cricut! I think it's the best thing I've ever bought for myself! :) I've used it a lot already. If anyone is thinking of getting a cricut, I highly recomment getting a cartridge from Close To My Hart (they are the only ones that carry this particular one) called Art Philosophy! There are 700 images/combinations on that one cartridge! It's very versatile! If I could only have one cartridge, it would be that one! It's expensive, but worth the money! Plus, you get other stuff from CTMH with it, like VERY NICE coodinating stamps!

Anyway, last night, I made words for my buckets hodling my tools and such on my craft table. I made 2 wall words too. Before I cut them out, I used alcohol ink and made some REALLY pretty vinyl! I'm totally in love with ink! You can do such cool stuff with it! I'm really getting into the distressing and it really spruces up stuff. Did I mention I LOVE ink? ;)

I need to get off of here so I can do my mending and get that pile out of here! I want to reupholster my office chair today, so I better get busy. Pics to come. Here's a sneak peak of the office. It's not all done yet. I have some orginazational items coming that I've ordered. Oh, and I made the cornices on my windows! I love them! So pretty! I found the Thomas Kincade material online. I made a cover for my cricut, and I'm going to cover my office chair in it, too. I hope to have enough left over to make a cover for my sewing machine and serger.

Changed the title of this blog!

2011-11-01T04:21:00.001-05:00

When I started this blog, I really couldn't even begin to tell you how bad I felt each and every day. I called it "Another Day In The Life Of A Train Wreck". I decided that is no longer appropriate for me. I do feel better. Not always a lot better, but at least I don't feel like I've been hit by a train every day! Now I'm just taking it "One Day At A Time"! :)

Cancer is gone.... well, skin cancer at least

2011-11-01T03:38:00.001-05:00

The spot on my head is still tender, and still has a couple knots I have to keep massaging, but it looks pretty good, and they got all of the cancer. Next hurdle? I have to go for a mammogram next week, and I'm waiting on results of my pap smear to see if I have cervical and breast cancer. Skippy! I have symptoms that can indicate both cancers, so my doc is working on it. Hopefully it's nothing. I'm running out of pieces parts to remove!

For my skin cancer surgery, I was not knocked out. I just had local anesthetic. Not the funnest thing in the world. Especially since I didn't stay numb quite long enough and felt them zapping me while cauterizing the wound, while processing my slides. I had to have an extra shot. Those are the worst part. The sound of them cutting on my skin grossed me out! I just started talking to them to keep my mind off of it, and drown out the noise! LOL!

I really like my LDN (Low Dose Naltrexone). It has helped my Chronic Fatigue and Fibromyalgia a lot. I still have some bad days though. It seems I'm constantly reminded of how broken my body is. It often feels one one step forward and two steps back. I guess it is progress, even if it is slow. I long for the days I can consistently feel good! Will they ever come? I have my doubts, but I keep hoping.

New Hydrocortisone by Core Pharma is old Hydro by Glades

2011-10-10T16:16:00.001-05:00

This post is for anyone out there who use to be on Glades hydrocortisone, and loved it. Many of us did great on it, and then Glades went out of business and quit making all medicines. Core Pharma wound up with Glades formulation and have finallly started production of it.

A Core Pharma rep told me it is being sold at Rite Aid pharmacies, and if you do not have Rite Aid near you, you can ask your pharmacy of choice to order it for you. They have to get it ordered through their supplier. Here is the NDC# for 10 mg. pills... 64720-331-05. If you want to make sure you get Glades, ask your doctor to specifiy that on your prescription and the doc can even write the NDC# on the script!

Skin Cancer

2011-09-01T19:57:00.002-05:00

Newest diagnosis is skin cancer. I have a spot about the size of an eraser on my forehead. I had it biopsied last week. I will have Mohs surgery on it, in October to remove it. I go back in Jan. for a scan for other skin cancers. The good thing is this one is basal cell carcinoma and I found it early. Basal cell is the best kind of cancer to have, if you have to have it.

Low Dose Naltrexone (LDN)

2011-08-21T02:46:00.000-05:00

It's been a month since I found out I have Fibromyalgia. There are only 3 drugs approved for Fibromyalgia. I tried 1 pill of Cymbalta and it put me in a tailspin! I lost 8 lbs. of fluid in one evening (not in a good way), and spend the rest of the weekend trying to get myself rebalanced. Diarrhea throws my electrolytes out of whack and puts me in a crisis. That was fun... NOT!

So, I called the doc on Monday and let them know. Next drug. I took 5 pills of Lyrica before I said enough is enough! My brain fog was even worse. I had a very hard time thinking at all! I felt like a drunk! I staggered around in the night when I had to go to the bathroom, etc. No fun! I called the doc again. I went in to see him. Well guess what people? I'm sensitive to drugs! ;) So the nice doctor said he'd be too afraid to try any other drugs on me, for fear I'd go into an adrenal crisis. Good enough for me. I didn't like those drugs anyway!

I would encourage anyone with Fibromyalgia, Chronic Fatigue, MS, or autoimmune diseases to look up Low Dose Naltrexone. It has helped me a lot, and I've only been on it a couple days. Is ALL of my pain gone? No... not yet, anyway. But, I'm not laying it bed 24 hrs. a day and feeling depressed and feeling like crying because I hurt so bad, either! I can still feel places that hurt at times. I don't notice my knees hurting until I try to go up or down the stairs. They are still tender, but nothing like they were. At my worst, I was laying in bed, feeling my whole body throb with pain. I couldn't do anything, and nothing was helping with the pain!

Naltrexone in it's full strength of 50 mg. is used to help drug addicts. In low doses, it works totally different in the body. It helps the body produce more endorphins, the body's natural pain killer. It can be taken in liquid form, or pill form. The normal dose is up to 4.5 mg. The beauty of the liquid is, you can start slow, and find out what dose works best for you. Since I'm so sensitive to medicine, I started at .5 mg. That seems about right for me, for now. Hopefully, in time I will be able to work up to about 3 mg. or so.

LDN is usually taken at bedtime. Some people take it in the daytime. About the only side effect is sleeping problems in the first week of taking it. Some people have trouble falling asleep. It makes me sleepy after I take it. It does that for some other people I have read about. Once you are asleep, you get into a good deep sleep. It can also cause vivid or bizare dreams. I have vivid dreams, but not bizare. As I increase dose, that may change. I don't know yet.

One other thing I've found to help with the brain fog is a product called "Thinkfast". I also put D-Ribose in my drinks when I can remember. I'm finding these things to help with the fibromyalgia as well.

Guess I should update

2011-07-28T10:50:00.000-05:00

Nothing exciting here, really. It's been 3 months since I updated, so I guess I should update a bit.

I have a new diagnosis. Maybe some others to come, but waiting on labs. I have Fibromyalgia. I've not been formally diagnosed with Chronic Fatigue, but I can tell you I have that as well. I've had them all my life, but, I also had Cushing's, and I think the high steroids helped treat them. For me, everything has cycled, all my life.

When I was a child, I fought to get my naps. My dad told me I would not be able to sleep when I started school. I said, "Too bad! I'll deal with that then. Right now, I'm taking a nap!" The story of my life is that I've always been tired. At times, I had more energy than others, but overall, I've been tired. I'm 40 now, so it's really wearing on me. I feel like I sleep my life away, and life is passing me by. I've tried Provigil, at 200 mg., and still I was tired, and slept a lot. Maybe my new doc, a Rheumatologist, will help me.

He's a super nice guy. He listens! Wow! I've met docs who just want to talk, and that is so annoying! So this doc diagnosed me with Fibro, and is checking to see if there is something else underlying. My body is diseased, that's all there is to it!

I have to say, I am depressed! I thought Cushing's was my only problem, and getting rid of that, I would feel great again. I did feel really good for the first 7 months. Then it all went downhill. Slowly but surely. I've gained all but 10 lbs. back, of the 60 I lost. I have Cushing's symptoms again, and I'm suppose to be cured. I don't know where all of that stands right now.

Now add in a new problem, the Fibro. Not new really, but I think it was in remission for a while, and is back, so now I'm dealnig with that. It hit bad in June. I felt like I had arthritis attack my whole body! My muscles hurt as well. I have a lot of muscle tension, and pains in my muscles. I was bedridden with it for 2 or 3 weeks through the worst of it. I decided this is for the birds! I'm so sick of being sick! So, I made the appt. with the Rheumy. I'd never been to one before.

He gave me Cymbalta to try first. Some say it's like a miracle drug. Not for me! One pill threw me into crisis mode. I was able to pull myself out of it after a few days, without going to the hospital. I don't know if I just reacted bad or if it lowers cortisol. I can't find much information regarding that. One body building site says it lowers cortisol by up to 40%! If that's true, that was my problem. Next drug please!

Lyrica is next on the list. I was scared to take it, because I didn't know how I would react. I didn't feel good yesterday, in general. My stomach was upset for most of the day. I took extra hydro before bed because I was nervous that the Lyrica might throw me into a low while sleeping. Wrong! I was wired until about 2:30 or 3 am. Finally the Lyrica kicked in! Wow! I slept really good. I woke up with very little pain. I'm suppose to take this 75 mg. for a week, then take it twice a day. I hope it controls the pain altogether. It would be nice to be pain free! I worry about it making me so tired though. I'm already tired. I don't need to be extra tired! We shall see how this works out!

Qualitest is not my friend!

2011-04-06T14:05:00.000-05:00

It's been a while since I last posted. I've been trying to figure out what in the world is going on with my health!

In May, I will be 2 yrs. post BLA. I'm back at square one! I've gained back all of the weight I had lost. I was feeling like I was cycling like I did with Cushing's. Even my specialist could see my red round face and neck. When I saw the specialist, he didn't think I had regrowth where my adrenals were, but had no other ideas of what was going on. He said I should test. To do that, you have to switch steroids to dexamethasone. Hydrocortisone shows up in your testing, so you can't tell whether the results are from the pills you are taking, or if your body is producing cortisol. When I would switch to the dex, I would feel so much better, and my symptoms would go away. I'd quit cycling. I couldn't figure out why that was. Dex is a much stronger steroid, yet it wasn't giving me the high symptoms the hydro was.

A lot of doctors hate our medical support groups. They think they make us sick! (Weirdos!) Our support groups are our life line! It's through our support groups that we find the help we need. Doctors don't want to go the extra mile. By putting our experiences together, we can figure out problems that are stumping even our docs. One of the gals in my support group posted about problems she was having with the Qualitest hydrocortisone. It still didn't dawn on me for a little bit. Then I started thinking about how my symptoms would go away when I went off of it, and onto the dex. I contacted her and asked if she was having XXX symptoms. She said yes! Ding, ding, ding! The lightbulb went off in my head. I had not considered that the hydrocortisone was the problem.

I was only on 10 mg. of hydro, which is not much at all when you have no adrenals. When I first had surgery in May of 2009, I was on Glades hydrocoritsone. I did great on that. It was my favorite. The problem is, Glades went out of business. They quit making all drugs. I don't remember exactly when the pharmacy switched me, but I think it was Nov./Dec. of 2009. I knew I didn't feel as good on Qualitest, but figured this was my lot in life now, since Glades quit making theirs. The pharmacy had run out of their stock of Glades, and now Qualitest was their choice.

At first, I was able to maintain my weight, but the other Cushing's symptoms started creeping back in, one by one. That's when I went to see my specialist last Sept. to see what he thought was going on. Then I had a crisis at the end of Oct. I still wonder if that didn't have something to do with this drug as well. I'll never be able to prove it, but it's a theory. After my crisis, I started gaining a lot of weight while on this Qualitest hydro. I seemed to be cycling harder and faster. I don't know if it was the accumulation of drugs in my body at that point or what. Then when I would go on the dex, the symptoms would subside.

So, I got the bright idea to call Glades and see if I could get ahold of anyone at their old number. I did, and they told me who they had sold off to. I called that number and they had sold the hydrocortisone portion off to Core Pharma. The formulation is the same! Same inactive ingredients! I even got the NDC# to order the hydro, but Core Pharma is not making it just yet. They said not until this summer. I wish they would have told me that the first time I called! In the meantime, a good friend of mine told me that she orders hers from New Zealand, OTC. The pills are small like Glades was, and she does good on them. Another friend reported the same. So, I ordered them from there, for the time being. I'm on day 3 with the new pills. I'm doing good so far. It will be interesting to see if I start dropping weight again, and doing really well. I think I will.

I started looking at all of the inactive ingredients between different manufacturers of hydrocortisone. There is a big difference. While all of them might work fine for one person, the next person could have trouble with all of them! One of the inactive ingredients in the Qualitest is known to attack hair follicles and make the hair fall out! I was losing huge wads of hair, and couldn't figure out why! I showed a pic to my doc. He said, "What's that?" I said, "My hair!" Even he agreed it was a lot to lose from one washing!

So, here are the symptoms I had on Qualitest hydro. I called and reported it today.
massive hair loss
red facial and neck flushing
weight gain
itching in general
hive like rash
spiking blood pressure/low blood pressure
indigestion
shaking internally
acne
red stretch marks
insomnia
brain fog
and probably others I'm forgetting.

When I say weight gain, I'm meaning 45 lbs. in 5 months. I did gain some of that while on dex, but it slowed way down while on dex. The real rapid gain was while on the Qualitest.

~Blah~

2011-02-27T03:32:00.000-06:00

I haven't updated my blog since right after my crisis, so that would have been in Nov. There is not a lot to report. Not good stuff anyway. All of my Cushing's symptoms have returned! I can't think of one that I have not had come back.

I've gained about 35 lbs. since Nov.! Talk about frustrating! With 10 more lbs., I'll be where I was when I went in to have my adrenals removed! Every bit of progress I made has quickly faded away. I'm back at square one, only it's a bit different. This time, I have no adrenals, with all of the same symptoms. All of these symptoms went away for about a year. The weight loss took a while to kick in (I think 3 or 4 months). Once I started losing, I lost pretty quickly, but the weight loss stopped at 7 months. I was able to maintain my weight for close to a year, as the symptoms slowly began creeping back in.

With my weight holding steady, I could blame the symptoms on something else. I really didn't think I could have rest tissue (regrowth of tissue where the adrenals were removed). As time went on, more and more symptoms came back. Hormone labs looked good, so we couldn't blame any symptoms on any of that! My good doctor in California said I needed to test, because he had no idea what else would make these symptoms come back. The good part is, he got to see it first hand in his office. My face was swollen that night, and flashed red, while I was sitting there talking to him. It randomly does this, and I don't know why. It did it all the time when I had Cushing's. It went away when it appeared I was cured. It came back with the other symptoms.

I have done some testing. Most of it, I send to California. I forgot to add my fax number, so the lab is holding my reports hostage! There are a few local ones that I need to pick up. The only result that I did pick up local that showed something was a 17-Hydroxycorticosteroid reading while on Dexamethasone. Dex is not suppose to show up in our testing. A friend of mine has rest tissue and she doesn't get anything to show on this particular test. I usually had good results with that test in my previous testing. The thing now is, I have no adrenals, so I shouldn't be producing cortisol at all! Nothing detectable.

I know that I am still cycling. I've been on 10 mg. of hydrocortisone for over a year. That's not much for someone with no adrenals. I've been lower too, and did good. I went back up to 10 though because I was working so much, I was afraid of having a crisis. That's another tell tale symptom.... working like crazy, but gaining weight. Anyway, when I'm on the hydrocortisone, I can tell the cycles more than when I'm on the dexamethasone. For some reason, dex seems to even me out more. I still cycle on it though. I have periods where I am all energy, working like crazy, breaking out in zits, and others where I hurt all over, and can hardly move! I have times I can't seem to get enough sleep, and other times I don't sleep but a few hours a day. My sleep cycle is a mess again. I didn't have to deal with this during my "cured" period after surgery.

The brain fog is really bad again. The emotional aspect of this disease is bad! Some days, I feel chipper. Other days I feel blah. Still others, I feel downright depressed and end up crying. I'm so very tired of this disease. I wish it would leave and never come back. It was bad enough to face my kids having the same disease, but even worse now that I'm going through all of this again!

My mind goes in so many directions. If my kids are left to progress through this disease, they will be as bad as me, for sure. They are worse than I was at their ages. The part I struggle with is this. They aren't "THAT" bad yet, and I worry that they will face recurrence after recurrence like me. I worry what this will do to them in the long run. How will they be able to function as adults. I don't function very well, and even at my best, in the "cured" state, it still had limitations. I don't think you ever fully recover from this disease. You can feel 100% better than you do with the disease (I've been there), but not feel 100% like you never had a disease. The damage it does is often permenant. You have to live the rest of your life with those problems. I'm really scared of sending the kids through surgery, and have them come out on the other end of it feeling worse than they did going in. There are people who feel like that. It's great when you get cured. When you don't, not so much. It's something we have to do. We have to take the chance at getting cured. I know that. It's a much easier decision for my own body, than for my kids'. It's a decision I don't want to have to make. I really don't want to wear big girl panties any more!

If you think of us, say a prayer for our family. We surely need it.

My First Adrenal Crisis

2010-11-21T15:28:00.000-06:00

If this is the first time you've read my blog, I'll give you a briefer, to bring you up to speed. If you already know my history, skip to the next paragraph. I had Cushing's disease, probably all my life, but the symptoms kicked into a higher gear when I was around 23, which was 17 years ago. In 2007, they really kicked into high gear. I went to CA to see a Cushing's specialist and 9 months later, was diagnosed with Cushing's disease. I had pituitary surgery to remove my 1/2 mm. tumor. I had a brief remission (about 3 months) and started testing again. I had my adrenals removed, which is a bilateral adrenalectomy, or BLA for short. That surgery was in May of 2009. This means I am forever prone to having an adrenal crisis.

I've been crusing along really well since my BLA, until Oct. 27, 2010. First, lets back up a bit. I had my gallbladder removed on Tues., Oct. 12, 2010. They found an umbilical hernia and repaired that at the same time. It was incarcerated, which means "something" was going through the hernia. In my case, it was fat growing through. The fat was removed and the hernia repaird. I had noticed after this surgery that I had some urinary urgency. I would not feel like I needed to "go", and then all of a sudden, I would need to go, and it was "right now"! I figured with all they had done, and filling my abdomen with air, my bladder may have shifted or something. This was the ONLY symptom I had. No burning, no dark urine, no foul odor.

Fast forward to Tues., Oct. 19th. My husband left for Belgium on a business trip. No biggie. He's been on trips before and I've been fine. I'm never totally by myself. I have my kids here, and my cousin close by. I got my flu vaccine on Friday, the 22nd. I think it was the next night, one of my kids had the flu! Go figure! Since my hubby was gone, I had the honors of cleaning up the mess! I washed my hands a lot and used hand sanitizer and Lysol. I even had my son drive me to Wal-Mart to get a spot bot to shampoo the carpet, and minimize my contact. It didn't stop me from getting the flu, and my shot had not really had time to work (if it even covered this particular strain).

Now, we will fast forward a few days to the morning of Oct. 26th, which was a Tues. morning. It's now 2 weeks after my gallbladder/hernia surgery, and one week after my husband left. I was going to have an open house for a new business on Tues. night (this night) and Thurs. night. I woke up Tuesday morning feeling sick to my stomach. I thought to myself, "Oh great! I'm getting the flu!" I took extra hydrocortisone, like I do when I'm sick, and I felt better, and actually felt fine until about 3 PM. I had run out to a store to get a few things. While I was there, I noticed my heart felt like it would speed up and slow down. I tried to smile at a child who passed me, and my smile felt crooked and weird. I knew something was wrong, so I got checked out of the store and hurried home. I only live about 2 miles from anything in our town, so it's not a long trip. About 5 min. and I'm home. I took more hydro. I have no recollection of how much over the course of this day. I just know I took more. My normal dose is 10 mg., and I'd take 5 mg. more, or 10 mg. It helped for a while, but then I'd feel my heart start speeding up and slowing down again, and I knew I needed more hydro. That was my only symptom that something was wrong. It ended up that nobody showed up for the open house this night, so my cousin, who was with me, and I, closed up the open house and we drove to her house, which is about 5 or 6 houses away. We ordered some supper. I noticed I was speed talking, but didn't think a lot about it. I was excited about my new business. Right before we left my house, I had the urinary urgency again. I told my cousin I'd been having that since surgery. When I was sitting at her house, I started not feeling good again. I started putting pieces of the puzzle together. I'd been taking more hydro than normal through the day, even more than when I would normally get the flu. It would help for a while, then I needed more. I had the urinary urgency, and had just had gallbladder surgery 2 weeks before. It dawned on me that I probably had a UTI along with the flu! So, we left her house, and went back to mine. I decided I'd just use my shot and stress dose instead of taking the med orally. I felt so much better, so I sat and talked to my kids for a while, to see how it would go. My oldest son, Caleb is 18, and my kids are fully aware of what a crisis is. I felt great, for about an hour, and then I had that sinking feeling again, and my heart was speeding up/slowing down. I told him we better head to the ER so I could get some IV steroids and fluids. I was obviously headed for a crisis. I didn't think it would be a big deal. It wouldn't have, if they would have treated me properly when I told them to!

We got to the ER around 1:30 AM. I gave them my crisis letter. I couldn't find the one from Dr. Friedman, so I took Dr. Holmes that I still had. Even though he is not technically still my doctor, the rules are still the same! I also wear my medic alert bracelet and it has it spelled out on the back, what they are suppose to do! It says on the front:

Grace XXXXXX
NO ADRENALS
ADRENAL CRISIS
My endo's name
My endo's phone number

On the back it says:

100 mg. solu-cortef
in 50 cc of NS in IV
over 15-30 min.
PCP's name
PCP's number

I checked in, and they told me to have a seat. They called me back to triage after 10-15 min. I went back to the waiting room, to wait for registration. I exchanged all of the ins. info. I waited again. I don't know how long between all of this. I finally got back to see the doctor. He was nice, but not very knowledeable about adrenal crisis. He said I probably had a UTI brewing from the gallbladder surgery, and was going to send me home with an antibiotic and an antibiotic prescription. I asked if he was going to check my electrolytes. He didn't see the need. I told him I didn't feel good, and didn't feel comfortable going home without knowing my electrolytes were in the right ranges. All this time, my body was using up the stress dose shot I had taken. He asked me which electrolytes should be checked (DUH!)! I told him mainly sodium, potassium, and magnesium. He said ok and ordered those. I had given them a urine sample that was sent to the lab. They came in and drew my blood and sent it off to the lab. He came back and told me my urine looked fine, but they were going to treat me for a UTI anyway, as that was the most likely culprit. He decided he would go ahead and treat me as if I were in a crisis. He said something about giving me steroids. They started an IV, then we waited. We were waiting on the steroids and I was getting loopy. I was talking to my son. I knew I sounded loopy. I felt loopy. At one point, I felt like sitting up on the bed and yelling "Whoo". I told my son this, and told him I was getting loopy. I asked him if he notice. He said, "Mom, you've been getting loopy for a while." I started telling him I loved him and I was sorry he had to go through this with me, then I was crying, then I was laughing because I was crying. Caleb said, "I'm going to go see where those steroids are!"

Right here, it gets really confusing because a lot of things happened at once. Caleb left the room to get the doc and find out where my steroids were. He told the doctor, "I know my mom, and she's not acting right. She's getting really loopy". The doc said he didn't want to give me my steroids until the results of my blood work came back from the lab. There was a nurse standing there who looked through a pile of lab papers. She asked my name, and found my labs in the stack. The doctor looked at them, and said they were fine, I didn't need my steroids. Now, mind you, these were drawn not too long after getting into the hospital and reflecting my stress dose shot of 100 mg. The doctor told my son I'd get better since my labs were ok, and he didn't want to give me the streoids because in his words, "She doesn't need them". After the doctor told Caleb my labs were "Fine". Caleb said, "Well, she's not fine." The doc threw the labs up in his face and said I was fine (again). Caleb told him if I was not acting better in 5 to 10 min. he wanted the doctor to go ahead and give me the steroids. He was trying to work with the doctor, but he knew what I needed!

In the mean time... I was in the room alone, and I started sinking quickly! I yelled out for Caleb to come quickly and bring my shot! I didn't know what all had been happening out at the desk. I lost control of my bladder and peed all over the bed. Caleb tried to hand my emergency kit to the doc and he told the doctor to give me my shot. The doctor said, "I'm not giving her that shot! She doesn't need it!" He was telling me that there was nothing wrong with me. He said I was healthy and that I was just having a panic attack! I told him I DID need my shot, and to please give it to me. He refused. He said again, that I didn't need it, and I was "Just having a panic attack". I told the doctor that he must want me to die, and that he was killing me! He said I wasn't going to die.. etc. Caleb was trying to ask the doctor if it would hurt me if I had my steroids. The doc wouldn't answer him. He just kept saying I didn't need it. Caleb said, "Oh, forget this!" He whipped out his cell phone and called my mother-in-law to ask her what to do. She must have said that same thing as Caleb, to find out if it would hurt me to give it to me and let me do it myself. Caleb could not get an answer from to doc, so he stepped close to make eye contact with the doc and ask him again. The doctor went off, and jumped back and yelled, "Call the cops! Call security! This kid tried to come at me!"

At this point, the whole event was extreme stress on me, and sent me into a seizure. I peed myself again. My head slammed back into the bed and my back arched off of the bed. The doctor didn't even pay attention to me at all. Once the cops took Caleb out, the doc walked out of the room and left me. (Thank God for my nurse! She was my angel! She stayed with me. She told me the docs were overboard and she knew I needed my shot!) As my body arched, I felt my body pulling to the right. I knew I was about to die. I could feel the tug of my spirit trying to leave my body. The Lord and I had a quick talk! I told him not now, not like this! Not with my husband in Belgium, my kid in jail (he didn't go to jail, but I didn't know that at the time. I just knew they took him away.) and not with my other kids at home! They need me! I asked God to give me clarity of mind and not be loopy and let me reason with this doc who was being unreasonable!

I snapped out of that seizure and back to the room. I could talk again. The doctor came back to the room and I told him I was asking him one last time, if he would help me. I said, "Sir, do you not agree there is something wrong with me? I was not like this when I came in. Something has changed. I am loopy and I have no control over it! I have peed myself!" He said yes, I was different, but it was because I was having a panic attack. I said, "Ok, fine. If this is just a panic attack, then give me something for the panic attack. I've never had a panic attack before, but I'm telling you, I NEED my steroids!" He wouldn't give me anything! Nothing for a painc attack, no steroids, and he didn't even want to give me the antibiotic he was going to send me home with. I had to beg for them to give me that pill, since he wouldn't give it to me in my IV! He said, "It's not going to work that fast". I said, "I know, but it can at least START working while I lay here and rot! You must want me to die!" He said he didn't want me to die. I said, "Yes you do, because you are killing me! I need my steroids! I have asked for help and you are not helping me." I asked him one last time if he was going to help me. He said no, I didn't need anything. I said, "OK, fine! You get out of my face! You get me dismissed from this hell hole! Don't you come back in this room! You send someone else to do it!" My nurse heard everything! So did the security guard who was standing outside my room! He did let me swollow that one antibiotic pill before I left, and he sent me home with a prescription for antibiotics.

They dismissed me and my nurse walked me out toward the lobby. She had to hold on to me to steady me as I walked. I got to the lobby and was so out of it, I started to walk out of the hospital, and realized I didn't have a ride. The nurse had told me I could call family from a phone. I turned around and saw people at the desk. I walked over and told them I needed a phone. The lady pointed toward the area where the phone is. She said it was down by the vending machines. I started walking in that direction and went past the phone and vending machines. I started back through the ER doors, and thought, "No, I don't want to go there! They tried to kill me! I don't want to see them again!" I turned around and saw the phone on the wall. My hands were shaking as I lifted the phone. My eyes were blurry. I couldn't remember phone numbers. I started rattling off numbers in my head and came up with my cousin's number. I walked outside and sat on a bench, waiting for her to come get me. My nurse had given me back the emergency papers I took in. She put a sticker on them that had the doctor's name, and the date I went in. I didn't remember this. I saw the papers on my fridge a week later, and wondered where they came from. My cousin told me I brought them home from the hospital that night.

I'll interject one point here. I had a friend in CA that Caleb found online when he got home. The cop was really nice and didn't take him to jail. He told him to go home and get help for me. Caleb found a friend of mine online. She helped him try to page my doctor in CA, and then she called the hospital herself. She spoke with the head nurse. She told them she was a patient advocate for me. She told them I have no adrenals, and I had a medic alert and a crisis letter, and that they needed to give me my steroids and an antibiotic. The nurse told her that is not "their" protocol! She said the doc would decide what I needed and that I didn't need my steroids. I was "just having a panic attack"! Again, they refused to listen to anyone! The doc told me that night, that there were 4 medical personel on staff, and they all decided that a panic attack was my best diagnosis!! UNBELIEVEABLE! I was in that ER from around 1:30 am to 6:00 AM, with no help whatsoever!

So, I got home, and gave myself another shot, and went to bed. I slept 6 hrs. and then got up and called my PCP. They got me in at 3:45 PM. While I was there, and told him what had happened, I had to stress dose with 200 mg. The 100 mg. was not enough, and not lasting! I did 200 mg. in about a 15 min. time span. When my doctor walked out to call in a direct admit for me to St. Ann's hospital in Westerville, OH, I had to use my second shot. I sent my son after the doctor and I laid down on the table. Everyone in that office came in to help me! They started oxygen, took my blood pressure, etc. My nurse practitioner told me later, that I was struggling to get my thoughts together to talk to them that day. They called the squad to get me to the local hospital that tried to kill me less than 12 hrs. before. I needed immediate help, and that was the closest hospital. I was to go in and get my IV, steroids, and antibiotic started, then go to St. Ann's once I was stable. My PCP made copies of my mediciation list, 2 emergency letters (one from Dr. Friedman, and one from Dr. Holmes), he made a copy of my surgical report from Dr. Chiang, stating that my adrenals had been removed. He sent all of this to the hospital with me, gave my son a copy, and he took a copy himself! When the squad arrived, he told the EMT'S that I was his patient, and I had no adrenals. He told them this was not adrenal insufficiency, this was an ADRENAL CRISIS! He told them I was to get my fluids, steroid, and antibiotic STAT when I got over to the hospital. He is just a few businesses down from the hospital. He followed the squad to the hospital from his office! He walked in behind us and gave the ER staff my orders, told them what to do, and left. I don't know exactly what he said to them, but I know he told them to get this stuff started and take care of me. At the same time, the EMT's were handing me off to the next ER doctor.

This guy says to me, "Now honey, it's gonna be about 30-45 min. before we can get to you. We had a bad wreck and some head trauma's and some cardiac patients come in". I sat up on my gurney and said, "SIR! Do you not understand what STAT means?!!? You are a doctor and you are suppose to know this stuff! STAT means do it RIGHT NOW, not in 30 - 45 min.! I don't have that long to wait!!" I told them the ER had tried to kill me when I was in there earlier and I'd been in a crisis mode all day. He said, "Just calm down. We will get to you as soon as we can." They stuck me in a room and left. A lab tech came in and started asking me what kinds of medicine I take. I said, "I don't have time for this! My doc sent that! Find it!" He said, "I don't see it anywhere. Can you just tell me what all you take?" I said, "FIND IT!" I think I passed out after that. The next thing I know, the doctor shows up. He said, "Now honey, tell me what happened over the last 12 hrs. or so." I touched his hand and said, "Sir, please know I'm not trying to be obstinate. Once I get my meds, I'll tell you anything you want to know." He tried to talk to me some more, but I shut down. I chanted, "IV, steroids, IV, steroids..." I don't know how many times I got it out before passing out again.

The lab guy came back in at some point and wanted to draw blood. He said, "Bad news! Your veins have collapsed!" I thought, "Gee, ya think I'm telling the truth now?" I couldn't talk. He poked and got "some" blood. He said he hoped it was enough, and ran off to the lab with it. He came running back and said, "Bad news! Your blood is a mess! You are septic! We need to get atrial gasses!" I thought to myself, "Oh no! This is going to hurt!" I've heard that is a painful procedure. I remember a nurse coming in to help the lab tech, since my veins were collapsed. She picked up my arm and it was limp and flopping everywhere. I had no control over it. I never felt the first poke from the atrial gas draw. I don't even remember them doing it. I think I passed out again! The doctor came back in at some point and asked ME how much steroids I WANTED! I was loopy and got so excited when he said "steroids". I said, "OH... let's see... 100 mg. is the normal stress dose, but I had 200 mg. at my doctor's and that wasn't enough because I'm really sick. Maybe we should start with 300... no, I'm already behind, maybe 400... maybe 500... Oh, I don't know. You just pick something. Anything is better than nothing." He ran to the door and whispered something to the lab tech. The rest of the night is pretty much a blur. I remember that they FINALLY let my family come back with me. At this point, I couldn't really see them. I could make out the shape of their body and color of their clothes, so I knew it was them. My cousin thought I was sleeping a lot. I was in and out of consiousness! She said I would talk to them and I made sense, so they thought I was ok. I gave my son detailed instructions on what to do with the other kids, but I didn't remember it! The nurse came back to my room around 10 PM or so, and told me I was stable and they were going to dismiss me! I had enough sense to know I was not stable. I told them they were not sending me anywhere until I had my "escort" (meaning squad) to St. Ann's!" He said, "Who arranged this? When did this happen?" I said, "What is your people's problem?!!? My PCP arranged this at 3:45 PM! I was suppose to just get stablized here and go there!" He said, "We didn't know about this." I said, "Get out to your desk and FIND MY ORDERS and I'm not going ANYWHERE but in a SQUAD to ST. ANN'S!" I lost consiousness again. Any time I had to exert myself at all, it took everything from me. The next thing I remember was that they said my ride was "here".

I got into the squad and they took care of me! It was Critical Life who was taking me! I don't know what those men looked like, but they were saving me! I remember the one man saying to me, "Hold on, we've got you now! We've got you on bolus". I said, "Wide open." They said, "Yes, that means wide open! We've got it coming to you as fast as we can!" I heard him say to the other guy, we better get the defib kit ready, just in case." I thought to myself, "Yeah, I'm pretty close to dying! So much for "stable"!" I don't remember much of anything else. At one point, they asked me if I knew where I was suppose to be. I said, "St. Ann's". There has been question if I ended up at OSU in between hospitals. The squad report says I didn't. Another friend had called my hospital and was told I had been taken to OSU. A few days after I found this out, my doctor at St. Ann's came by and asked me if I went to OSU between my local hospital and St. Ann's. I said I didn't know. So, there is still confusion about that. He must have read something on some report that made him think I went to OSU as well. During the ride, I tried to open my eyes once, and felt like I was going to puke, so I closed them. As long as I kept them closed, I didn't feel like puking. I never once puked through this whole crisis!

From there, the doctors at St. Ann's told me I was in ICU for 2 or 3 hrs. so they could get me stable! Yet I was supposedly stable at my local hospital who was about to send me packing and send me home again! I don't remember any of that! They had to give me 200 mg. every 6 hrs. for the first day, then we started to decrease my dose. I was in the hospital from Oct. 28th (I got in there just after midnight) until Nov. 2nd. My legs were extremely weak. Probably a combination of the crisis, then high steroids, then the wean. I'm now going to physical therapy 2x a week, to rebuild my muscles. My hips are extremely weak.

Before I left the hospital, my doctors told me, "Honey, even though you know we told you that you were in septic shock, you don't even begin to know how bad you were!" So much for being "stable" at the other hospital! I am still waiting for ALL of my records to come in. I have some, which have incomplete reports. Only told from their side of the story. I know that once I was stable, and able to drink, they made me drink potassium from a cup, while they were also giving it to me in my IV. That's how bad I was! They don't make you drink it while it's coming in your IV, unless you are EXTREMELY low! I continue to need the potassium, so I wonder if my kidneys took a pretty hard hit from this crisis. More tests to follow!

Scentsy!

2010-10-19T23:56:00.000-05:00

I'm so excited! I love for my house to smell good! I don't like the soot from burning candles, and the really good ones with a lot of fragrance are really expensive, and don't last that long. Scentsy is the perfect solution! I was going to order some just for myself, but decided I should just get the whole kit and become a consultant. It will be a fun product to sell. I love people! I love being with friends and having a good time. I've also been trying to think of what I could do to make some extra money for us. That's hard when you are a stay at home, homeschooling mom that's recovering from a disease, and has sick kids! Again, Scentsy is the perfect solution. I can do it in the evenings, when my husband is home with the children, and it gives me some time away, to relax a bit and have some fun, while I'm making money!

Gallbladder is gone, so is hernia

2010-10-16T17:43:00.000-05:00

I had made a post, but don't know what happened to it. I was so tired I didn't have the energy to start over!

So, here it is. I had my gallbladder removed and they found my hernia and repaired it as well. The hernia repair is the part that hurts. The holes from the gallbladder removal don't hurt, but my belly button is SO sore from the unbilical hernia repair. It was incarcerated, and in my case it was fat that had filled the hernia and grown down through it. Better that than intestine! Now I have color pics of my insides for that too!

My girdle has been my best friend lately. It helps to hold my belly in, and the weight of it doesn't tug on the incision as much. I've been sleeping a lot! If I didn't take pain meds, I couldn't sleep, and if I take them, all I do is sleep! Sleep is good when you are recovering from surgery though. I had surgery on Tuesday, and this is Saturday. Today, the pain is not as bad. I've went a long time without a pain pill today.

The best part of all of this is, I look like I got a mini tummy tuck. To fix that hernia, the doc had to pull fat in and sew up the hole. I wish she could have just done the whole thing and be done with it!

No more pain from my gallbladder, so that's a blessing. Just dealing with the hernia pain. Oh, one other thing. The surgeon didn't use mesh. That means I have a higher chance of it happening again, but she said the bile not being sterile could cause problems for that mesh and it would have to come back out, so she opted to not put it in. Hopefully I won't have any more trouble from it.

That's it till next time.

Updates! Updates!

2010-10-07T00:44:00.000-05:00

Ok, I admit it, I'm terrible at blogging! There is just too much going on all the time! I'll try to do better, but I'm not making any great promises!

Since my last update, I made a trip to CA with the 2 oldest kids. We had a good trip and the good doc we went to see felt one of the children probably has Cushing's, and the other one might too. Acromegaly for Caleb is up in the air. He definitely has symptoms of it. We will test further before it is ruled out. We've done just a bit of testing since getting home. The first week home, all I did was sleep! Honestly, I just finished unpacking tonight, and our trip was 1 month ago! So, we are waiting for testing supplies for the kids to do much further in the testing dept.

With me... well, we don't know what all is going on exactly, BUT, since getting home from CA, I have a new development. What I was told was diverticulosis turned out to be my gallbladder! Thanks to the STOOPID (yes, I know I spelled that wrong) doc in the ER, I have suffered since June with a bad gallbladder, thinking I was going to be dealing with diverticulosis/diverticulitis for the rest of my life! Thanks wonderful ER dodo! Exactly how much more time would it have taken to have done an ultrasound on my gallbladder THAT night, when I clearly stated that I still had my gallbladder, and I knew I had stones before?!!? Apparently too much time!

Fast forward from the ER visit... my PCP sent me to a surgeon in our town who does colonoscopies. I was not a happy camper with the thought of that project! Thankfully though, that surgeon is one smart lady! She immediately told me she didn't think I had diverticulosis/litis and she thought it was my gallbladder instead! YES! Thank you! So she set me up for an ultrasound, a HIDA scan if the US was normal, and another CT scan just to dot all of our I's and cross all of our T's. Verdict, it's gallbladder problems. So, I am having surgery next Tuesday to have this booger removed! I can't wait! I think I'll feel like a million bucks when I get rid of this nasty thing! We shall see! I was feeling so much better before my gallbladder attacks started. It set me way back. I hope to be 100% on the mend when it's outta there!

Oh, and to tie this all together, I've read a lot of interesting things about gallbladder symptoms and I don't know if that is causing a lot of the symptoms I've been having and thinking I might have some rest tissue (tissue that grows back where the adrenals were, and starts functioning). I hope it all goes away when my gallbladder is removed. If not, it's back to testing for me too!

I want to get some new pics up soon. I think I will wait until the extra hydro is out of my system after surgery, and the gas they blow me up with disipates! No bloat! LOL!

Until next time....

New picture 15 months post op

2010-08-30T02:59:00.000-05:00

Just a quick update with a couple of pics. I see progress, but I also see some things that are worrisome. I will go back to CA next week to see my endo there, and see what all is needing fixed.

I'm starting to see collar bones again! I've lost about 60 lbs., but have stalled. Once I get my thyroid up and running again, I'll be back in the weight loss business. I'm wearing a size 16 dress in this picture. That's a far cry from the 26/28's I wore with Cushing's!

New laptop and Windows 7

2010-08-25T11:50:00.000-05:00

I'm lovin' it! I'm getting things set up, and getting use to it, but I can tell I'm really going to like it! Windows 7 is my kind of program! I may turn into a computer geek yet. Well, only half way! LOL!

I got a perm!

2010-08-24T22:24:00.000-05:00

I've had my hair straight for about 15 months. It was falling out again (thanks faulty thyroid) and it's so thin to being with. I just couldn't do anything with it! Clips, hair barrettes, and such, would slide right out. I've got body in it now! I like it. I'll post new pics later. When we go to CA in a couple of weeks, I'll take new pics.

Today was a bummer day. I have some major computer troubles with a new laptop I got. Wish I could start the day over!

Wow! Long time since I've been on here!

2010-08-08T04:08:00.001-05:00

I can't believe it's been so long since I've posted on my blog. There is a lot to update! First off, I love the new choices for backgrounds! I had to laugh when I seen the train! It fits so perfect with the title of my blog!

On to other things. Where to start? I'm now nearly 15 months post op! That seems so hard to believe! I've lost nearly 60 lbs. so far, and have at least that much more to lose. I'll post some new pics later. I don't have any recent ones to put up at the moment. My clothes are getting big again, so I think it's time to go down to a 14/16 for some things. There are still some 20's I can't wear, but some things are made different, or not sized right. I started out in a 26/28 15 months ago, so that's progress! I've lost tons of inches. I don't know how many at the moment. I have a lot of skin that will have to be cut off to get rid of it. If I could cut off the extra skin on my stomach right now, I could probably wear a 10 again!

I've been on 10 mg. of hydrocortisone for months! I don't remember exactly when I decreased to 10 mg., but it was somewhere around January, 2010. I've learned some things about my body along the way. I need 2 sodium tablets a day in the summer, and more if I'm sweating and spending a lot of time outside. I need 3/4 of a fludrocortisone in the summer. Winter time is a different story. I don't need any extra sodium, and only half of a florinef. Of course, that could all change by the time winter rolls around again! LOL! I take a boat load of stuff each day, but it's what keeps me feeling good! I'll list what I take, but keep in mind that everyone is different, and some people only take a few pills to feel good. We all have different circumstances. Here's my daily regimine:

7.5 mg. hydro at 7AM
2.5 mg. hydro at 2 PM
3/4 of a fludrocortisone tablet
Estrogel (estrogen)
Testosterone gel
GH
Levoxyl (thyroid)
Pregnenolone
Prenatal Vitimin
Provigil
Magnesium
Clarinex
Tonalin CLA
Vit. B12 sublingual
Sodium tablets

Things I take occasionally:
Pain medicine
Phenergan
Vit. D 50,000 IU

There is probably something I'm forgetting. LOL! Some of those things I could "live" without, but I don't feel good if I don't take them!

Overall, I've felt pretty good since having my BLA. I'd say life is much better! I did have a set back in June. I started having terrible pain on the right side of my stomach one day. I thought maybe I was too low on hydrocortisone, as I had tried to wean 1.25 mg. more, per docs instructions. I took more hydro, but it didn't change anything! I started feeling nauseated, so I took some Phenergan. If I ever get low (catch a flu bug or something), taking a Phenergan gets rid of any nausea, and taking just a tad more hydro takes away any other symptoms. So, I had taken extra of these, and it didn't change a thing! All the Phenergan did for me was make me extremely tired and sleepy, but I couldn't sleep for all of the pain. I thought maybe I was really low, and needed more hydro, so I took some more. I waited about 20 min. or so, and still, nothing changed. Only now that I had so much extra hydro in me, it made me sick, and I did throw up. That made me a little bit panicked! I took some more, because after you puke, you are suppose to take extra and see if you can hold it down. That came straight back up, as soon as it hit my stomach! I decided I was right in the first place, and whatever this was, it was not AI (adrenal insufficiency). I did not want to give myself my emergency shot, because I really didn't feel low.

This started out of nowhere, around 2 PM. The pain never let up, and felt a lot like labor pains, but at least with labor, you get a break! When my husband got home, he started looking online to see what might be causing the pain. We thought maybe gallbladder or appendix. Finally, around 6:30 or so, I had had enough! I yelled at him to just call the ambulance! LOL! I told him I was sorry later. ;)

When the squad got here, they asked questions, looked at my medic alert tag, and got me in the squad. They checked my sugar, and it was down to 58! I had no clue! I had no symptoms. I was in so much pain, that was all I could focus on. So, they put either glucose or dextrose in the IV they started. Before they did any of that, they gave me a Zofran. It's for nausea, and it works fast. I think they just didn't want me to puke in their nice red wagon! LOL! When we got over to the hospital, they checked my sugar again, and it only came up to 68, so they gave me the rest of the packet, container, whatever it was. THAT raised it up to 200 something later.

So, I told them what was going on, once I got in the hospital. They gave me some Nubain pretty quickly, thank the LORD, and got me down for a CT scan. I found out I had diverticulosis. Now, they said I didn't have diverticulitis, because my white blood cells were not high enough. Later, I found out they were raised, but just not to the point they give antibiotics. So, in my opinion, it was diverticulitis, not just diverticulosis.

So that has been an ordeal! I went to a liquid diet for a while, and I am slowly trying to add things back in. I have to find out what my trigger foods are. When I get something that doesn't work for me, I have another set back. That's the most of what I'm dealing with now. As far as recovery from the BLA, I've done great. Sometimes, after you are cured of Cushing's, these other diseases and conditions pop up, because the absence of cortisol (steroids) unmasks them. The treatment for some of these things is steroids. I've had diverticulosis for a while. It was seen on one of my previous scans, but never a problem before.

Enough about that. Let's talk about the kids and their problems. My two oldest kids started testing for Cushing's disease. They have gotten some highs, which are positive for Cushing's, but the doc they were seeing, apparently forgot how to read labs! I've been through too much, and I know how this disease and the whole diagnoses process goes. I'm not playing games! I don't have time to waste! I'm seeing my kids get sicker. SO, we hare heading to CA in Sept. to see our wizard doc! More about that in a min.

This had been so hard for me. It's bad enough to go through a disease yourself, but to see your children go through it, and know first hand what it's like, is harder than having it yourself! On top of that, both of them have major dental problems going on. It looks like my boy may have Acromegaly as well as Cushing's. You can have more than one kind of pituitary tumor at once.

For those who don't know, Acromegaly is a Growth Hormone producing tumor on the pituitary. If you are a child and still growing, this kind of tumor causes Gigantism. If you have already stopped growing, it is called Acromegaly, and it causes other bone growth. Your forehead bones grow out. This is called frontal embossing. Your jaw grows and makes your teeth spread. It causes you to develop an underbite, and other misalignment. It can cause hand, foot, nose, and ears to grow as well. He has several of these things going on, after having stopped growing for several years! To correct the jaw growth, first of all, it has to be stopped at the root of the problem. Then, they can start corrections. As it is, he will need surgery on his jaw to make it right again. They will break his jaw, cut off bone, and reset it. He will have to have braces to bring the teeth back together. My daughter has different issues. Her lower jaw is underdeveloped. The top is narrow and needs a spacer. I can't do any of this until she is diagnosed. They have to have MRI's and you can't get good pics with metal in the mouth.

So, I've been stressing about all of this! We didn't have the money to just hop on a plane to go see our distant doc! I was fretting about how we would ever come up with the money to go. We have spent so much for my medical care for the past several years, it has drained us! We had made some recent investments with money my hubby got when he lost his job. We were willing to pull them all, take our losses, sell our house... do whatever we had to do. I called our investor, and he said we had money available to take out, without penalty! God is so good! It seemed there was no way possible to make this trip. This is only the beginning. There will be much testing going on, and more travel, surgeries, follow ups, etc. At least we are back on the road to solving the problem. If I think about it for too long, it becomes overwhelming again, but I know God will make a way! He always does!

I had to change my blog settings

2009-11-18T07:15:00.000-06:00

I just changed my settings. I put this blog up to help others with Cushing's and for family and friends to be able to catch up with what's going on. I had an insensitive jerk post on my last blog post that I still look enormous and I should eat more cake, blah, blah, blah.

Why do people not care that you've had a DISEASE that you could not help? The DISEASE made me fat, not cake! I don't even like cake very well!

Usually people don't get under my skin like that. Lately, it's just been hard. I'm dealing with my own recovery issues and starting testing on 2 of the kids is a bit overwhelming. Then I seen this jerks post and it tipped me over the edge.

18 weeks post op, down 15 lbs! Woo hoo!

2009-09-22T23:19:00.000-05:00

It seems to me like it's taken a long time to lose that much, but at least I am losing now!

It's been a long time since I updated my blog. I really didn't feel like it, and it seems like nothing much changes. You just feel bad, waiting to feel better. LOL! I was doing really good, then hit a rough patch when all of my hormones tanked. That started around 4 weeks post op, but took a while to get bad and for me to realize what was happening. We've got that straightened out pretty good now!

Judy, if you read this, tell me again what program works with these blogs that lets us arrange our pictures better? I thought I had it bookmarked, but can't find it. I'll add pictures to this post, but this blog always messes them up!

I'm down to 12.5 mg. of hydrocortisone. That's pretty low for someone with no adrenals. We figured out why some of us can go lower though. Estrogen levels affect it a lot. I'm on estrogen now, and I don't need as much hydro as I did with hardly any estrogen in my body!

Here's the deal for me. If I'm on more than 12.5 mg., I don't feel any kind of withdrawal. I feel pretty good, and I don't lose weight. At 12.5 mg., I'm losing weight slowly, and I hurt some. Not super bad, but like I did when I was on the Keto (the drug I took before surgery to lower my cortisol). I feel the arthritis in my neck and my bones in my hands hurt and my shoulders hurt. I get achy all over sometimes, but those are the worst places.

It's hard after surgery, in a different way. People ask me how I'm doing. They expect me to say I'm doing great. In one way, I am. I feel that I am doing great for the type of surgery I've had, and compared to what some of my fellow Cushie's go through, I AM doing great. If I don't say I'm felling great, I think that they think it was a failed surgery, and it wasn't. It's just that it takes time to heal and get better, and with this weird disease, part of getting better is feeling worse (as if that were even possible). On the other hand, if I tell people I'm doing great or I'm feeling great, they think everything is back to normal, and it's not. Then they don't understand when I still can't do stuff, or be in church services, etc. Now I'm rid of Cushing's, but I will forever have Addison's. That involves fatigue, weakness, etc. You can feel totally fine one minute, and the next, you HAVE to lay down. Those things come on suddenly, without warning sometimes. I feel 100% better than I did with Cushing's, but not 100% like a normal person. All in all, I feel pretty good, considering, but I have to be honest and not minimize that there are also rough patches. I'm just an optimistic person and I'm thrilled with the progress I've made. I don't know if 100% for me will ever be 100% like I was never sick. I highly doubt it. I had symptoms for 15 yrs. Anyway, here are some recent pics.

My head is out of the sand, and I don't want to do this!

2009-07-26T19:21:00.000-05:00

I took my oldest daughter to her pediatrician the other day. She had fallen on the cement right before I had surgery, and hurt her knee. It was still bothering her some, so we had him check it out. That will just take time to fully heal.

While we were there, she asked me if she should tell him that she can't smell. I told her to mention it to him because we always forget to tell him that. She told him and he said, "HMMM!" He's never had a pediatric patient with that disorder (I forget the correct name, but I'm sure I'll get familiar with it) and he said one of the causes is a tumor pressing on one of the cranial nerves that makes us smell. So, he thinks she needs to see a neurologist. Since he said that, I said, "I also think she has something endocrine going on. She has the brown neck, elbows, knuckles, stretch marks, weight gain..." He knows all of my kids. We've been going to him for years. He knows she is different than the others. At least the 3 younger ones. He also knows I had Cushing's, so he said he thinks she needs to get checked out and see an Endocrinologist too. He's sending referrals into Children's, but I know she is not florid. If she has Cushing's, she is cyclical, and that will get us nowhere at Children's. I'm going to see if my endo takes her insurance and if we can get the referral to him instead.

I just want to stick my head back in the sand! I don't want to do this. I don't want to deal with this. I've seen it for years, and my husband commented once, before I was ever diagnosed, "Whatever you have, she has it too."

To top it all off and make matters worse, all of the rest of my hormones have taken their final bow. I'm replacing them now, but I just started that, and I just feel emotional. I feel like crying for no reason, or I feel grouchy with everyone, for no reason. I hate hormones! Why didn't they call them horrible moans? Anyway, add on the news of Ciera needing to test, that really makes me want to cry. I've known it for a long time, I just didn't want to deal with it. I've been in denial about it.

Zane’s 5th birthday

2009-07-17T21:54:00.001-05:00

Zane had a fun birthday. He had been telling my cousin he wanted a Spiderman web shooter, and he’d been telling me he wanted a Nerf blaster. Before, it was a tool set. I seen some nice tool sets back in March, so I picked up his gift early. He’d forgotten about wanting tools by this time.

I got him 2 tool sets. One had the regular stuff like screw drivers, wrenches, etc. The other had a screw gun, flash light, level, etc. My cousin made him a shirt (she works at a t-shirt place) that said, “Dad’s helper”

and she made one for Carrington that said, “Dad ’s other helper”.

She also got him some work gloves and candy.

At the end of the day he said, “I got everything I wanted!” LOL! He’d already forgotten that he didn’t get ANYTHING he wanted, just recently! Here are some cute pics. He had his safety goggles on before some of the pics and they left a red mark on his forehead and cheeks.

He was thrilled with his cake. It was actually a bunch of cupcakes together. It had a transformer on top. He was so excited about that!

Love those goggle marks! LOL!

8 weeks post op and new pics

2009-07-16T00:13:00.000-05:00

I haven't really noticed looking a lot different, but I have seen many changes as in how I feel. I do notice my clothes fit looser and I can wear things I couldn't wear before my BLA. I've taken new pics in the same dress I wore before my pit surgery. I forgot to take pics right before my BLA, but I was back up to the same weight as I was for the pit surgery, so it's comparable.
I don't like how this program puts pictures in. I can never get them to go where I want them on the page. Anyway, the new pics are with the straight hair, and the old pics are with the frizzy hair. That is the one thing I've seen a huge change in, my hair! It looks much healthier now. It's so shiny. I don't have any shine spray in my hair in these pics!

I don't have bangs in these pictures either. Those are all of my new hairs growing in! People have mentioned that my hair is getting thicker! I pulled all of the new hairs down and curled them with the straightening iron so you could see how many there are and how long they are!

I've been alternating doses of hydro from 22.5 mg. to 20 mg. every other day. I'm weaning down to 20 mg. It's easier on the body to alternate doses every other day and ease your body into it! It works good for me!

Everything is going good. I wish I had even more energy. I do have more than I had before surgery, that's for sure. I still don't have enough as far as I'm concerned. My body is still healing, so it's still slow going. I hate getting worn out after doing a day of anything, or doing much of anything at all, but that's just the way it is right now. I'm still happy with my choice to have a BLA, and I feel so much better than I did with Cushing's!

Another example of why it's so important to get diagnosed as soon as we can!

2009-07-06T22:48:00.000-05:00

Monday, July 6, 2009

Accidental death verdict on 40-year-old mum

Published Date: 03 July 2009 By Garth ApThomas
A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.

Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.

A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body's hormonal system.

The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.

Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.

Contributory factors in Mrs Richardson's death had been Cushing's disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.

The court was told by Mrs Richardson's husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.
Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.

Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.

She had been given a scan involving the pituitary and there was no evidence of a tumour.

It transpired the post-mortem had found Mrs Richardson did have a tumour, which had experienced bleeding.

Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.

Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.

Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.

Legal representatives for Mrs Richardson's family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson's treatment while at the Maelor.

He said that with hindsight the only potential other avenue may have been if she had been given steroids.

But Dr Stanaway stressed he doubted this would have been successful, emphasising Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.

Recording his verdict of accidental death Mr Gittins emphasised: "This is not an indication of responsibility, blame or judgement.

"That is not my jurisdiction.

My very sincere condolences go to the family."

On the Message Boards

From http://www.eveningleader.co.uk/news/Accidental-death-verdict-on-40yearold.5426530.jp

6 weeks post op

2009-07-02T22:57:00.000-05:00

I'm still feeling pretty good. I'm still not losing weight. I lost some with one of my weans, but stopped. I've weaned again, and now I'm on 20 mg. total for the day. My only "complaint" is that I am tired a lot. I suppose that's pretty normal for 6 weeks post op. If I get up early in the morning, then I need a nap in the late morning, or afternoon to make it all day. Or, if I just don't get up until late morning or early noon, I can usually go all day then.

I'm on a full pill of florinef now. I'm totally off of the BP meds. I have been for a while. My BP is doing good. Now I just have to watch that it doesn't go too low. It was going lower than it should, so I went on a full pill of florinef. Decreasing my hydro this last time made my bp drop more. I also ordered some salt pills. Those should help a lot too!

I've had a lot of headaches lately. I wasn't sure what from. I needed adjusted at the chiropractor, so I thought maybe that was it. That didn't fix it. It's not my BP. My sodium was on the lower end of normal last week, so I wondered if my sodium was dropping too much. Today, I ate a dill pickle and it went away for a while. It came back later, so I ate another dill pickle and it went away again. It's coming back. That makes me think it's my sodium dropping too low. It could also be causing my tiredness.

I feel 100% better than I did with Cushing's, but I don't feel 100% normal, if that makes sense. I don't know if I ever will. I had Cushing's for a really long time. At least since 1992-1994. That's when all of my symptoms began. I know I'm only 6 weeks post op, and it will take a year or two to get to the best that I will be. In some ways though, I feel like things will never be the same. That's ok, though. I'll take my new normal and be happy it doesn't include Cushing's!

I went to calling hours for a friend's father today. When I was getting ready, I had to check the time to see when my medicine was due, make sure I had my medicine in my purse with me, etc. I thought, "What a pain! And, and I'm going to have to do this the rest of my life!" But then I quickly thought, "Oh well, it's a small price to pay to get rid of Cushing's!" I don't think there are enough words to totally capture what it feels like to live one day with Cushing's in your body. It's horrid!

Anyway, the other thing I was going to say was that while I was at the calling hours, standing in line, I felt a bit funny. I don't know what it was. Kind of light headed maybe. I'm not sure. Those things just come on suddenly. I had been totally fine before that. You never know when stuff like that will happen. That's the pain of Addison's disease! I was fine, and it passed. If I felt much worse, I would have sat down. Those kinds of things make me think that I'll probably never feel 100% normal again. I'll always have Addison's now. I'll take it though! It beats Cushing's any day! I'm forever an optimist! LOL! Can you tell? Even as bad as Cushing's is, and I'm not downplaying it at all, I still think there are things in life that are worse, and I'm thankful I didn't have to deal with those other things instead! Cushing's is curable, and some diseases are not. I'm thankful I had a disease that was curable. There are always things to be thankful for, even in the worst of times!

Doing fun stuff in life again!

2009-06-17T06:54:00.000-05:00

We went to a friend's house yesterday and went swimming all day! We had a blast! My poor kids have not gotten to do anything fun for so long because I was so sick! They were exhausted! We came home and ate supper, and the 3 oldest passed out early, like right after supper!

Zane is going to be 5 next month. He was the only one who could not stand up in the water and touch bottom. At first, he was scared! He had on a life jacket and noodles, but he was scared. Well, it didn't take long before he was jumping in and going down the slide! He kept saying he was gonna "sunk" or "get sunked". LOL! None of the kids know how to swim. Carrington seemed to think he could just do what his little friend does, who knows how to swim really well. So, Carrington just jumps in, doesn't know what he's doing, then he panicked and didn't realize he could stand up in the water. I thought he was going to drink half of the pool yesterday! He would get on this alligator raft, and always end up flipping it, or get flipped, and try to drown himself again! They were getting pretty good with all of it by the end of the day. The older kids were actually learning to swim some.

We left my friends house and went home for supper. Andy made baked potatoes and hot dogs/brats on the grill. Then, we ran out to some garden centers after supper to find some vegetables and fruit for the late garden we are putting in. Then, I came home and looked online for places to stay for our planned vacation. It is never far from my mind how much I am able to do, and couldn't have done half of that in one day, before surgery. I'm not super woman again. It catches up with you. I started feeling sick to my stomach later. I was up past my bedtime, looking on the computer for places to stay on vacation. I had to just go to bed. I know I'm going to be really tired the next few days, but those days I get to do a lot, they feel so awesome! One thing I find myself doing, and that I've always liked about myself, is laughing! My friend and I were talking about people we went to school with, and old memories and we laughed and laughed! I find myself laughing a lot more these days. I LOVE to laugh! It feels so good! When you are sick and you feel miserable, even the things that are funny, just don't make you laugh like they do when you are not sick! There is a lightheartedness that comes with feeling well. I'm glad I've found that again!

Picture time!

2009-06-13T21:20:00.000-05:00

This picture was taken today. I'm 3 weeks and 3 days post op.

These are a bit messed up and out of order. I can't get them to load right. Sorry! This one was in the first week post op, after my BLA. I was on 50 mg. in the coral and white striped shirt.

Another one from today.

Another one at about 1 week post op BLA.

This was my surgeon, Dr. Chiang, from Brookfield, WI. He is an awesome surgeon! Besides his surgical skills, he's a very kind man!

This is a picture from before surgery. I was on the Ketoconazole at this point, but I still had "high" times. This shows how red my skin would get.

This was one of the last pics I have from before my BLA. I'm not sure of the time frame from this picture until surgery.

This shows how red my face and neck would get, when I still had Cushing's. I knew I had a recurrence when this stuff was going on!

My big ole fat face, with Cushing's, before surgery.

I finally got my husband to show me how to get my pics off of my camera. He had changed the program a bit, and I had to learn again. I don't like the layout the blog uses. It makes it hard (I think). Maybe it's just smarter than me! LOL!

You can see in the pictures that my face has lost most of the redness now. It has started slimming down, even though I'm still on 35 mg. of hydro. That's a pretty high dose, and I'm still seeing improvements! My lips use to be really red all the time. Now, they look normal again. Sort of pale in comparison. I think you can see how good I feel, just looking at my current pics. I feel so much better. I still get wiped out easily. I did a lot yesterday, and today, I slept all day long! Each day is still better, and that's so exciting!

And the wean goes on!

2009-06-12T05:40:00.000-05:00

I went to see my endo yesterday. I get to wean again, and again, and again. LOL! As long as I am tolerating it, I can go down fairly quickly. I'm going to end up cutting out my middle dose. I'll wean down to 25 mg. a day, and do more lab work and see where all of it is, and see if I need to keep going down.

He had me cut my Florinef in half, at least for now. I have slight swelling. My bp was back up, so we know it's time for a wean. The higher dose of hydro can be causing some of my swelling too. He told me to watch my bp to figure out if I need more hydro or not. If I get dizzy from sitting up, or standing, then I need to take more Florinef.

It was a good visit. I got to ask about some other Cushie friends. I asked if he would be willing to see them, and help them out. Of course, he said yes! He is just amazed at how doctors are not helping us! There are plenty of us out there who are willing to be diagnosed! We are willing to do the testing, even though it is such a pain! We just want to be better. Some doctors have made remarks to patients saying, "Why do you push for this? Why do you want this disease?" How stupid is that? Who wants a disease? It's not that we WANT Cushing's, we just want to get the proper diagnosis and get FIXED! That really shouldn't be that hard to understand! I guess it's just the fact that unless you live with it, and you know how it feels, you don't really understand! We are not a group of people who go looking for diseases to have. We are sick people who are looking for answers as to what we have! Big difference! I'm so thankful I have found a doctor on this side of the US to help me and others like me! They are too few and far between!

My husband commented last night that my skin has definitely changed. It's much softer now. My cousin keeps commenting that she can't believe how "pale" I am! LOL! She is so use to seeing my face always bright red, and now the redness is gone, or mostly gone. It started looking a bit red again in the past few days, since I need to wean again, but nothing like it did before! People have commented on my face slimming down too. I don't notice my heart any more. I use to always be aware of it beating, or skipping beats, fluttering, etc. Now, it's so calm, I don't even notice it. There are just little things like that, that nobody can see, that I notice, and things like that make me feel so much better!

I'm a Weaner!

2009-06-05T01:12:00.000-05:00

I'm a weaner! I started my first wean this week, on Wed. I'm expecting tomorrow, actually later today, to be a bad day for me. I felt nauseated off and on for a while, yesterday, but not real bad. It passed and I was fine the rest of the day. The weans are not fun to go through. Hopefully, it won't be too bad though. Doc H. said I could go down 10 mg., and stay at 40 mg. until I see him next week. Then, he will go over my weaning protocol. Maybe I can go down 10 mg. more each week, if I can tolerate it. I'll see what he says. I know Dr. F. is having his patients leave the hospital on only 25 mg. I left on 50 mg. I don't think I needed that much, but at times, I think I did, and I'm glad I had it.

I gained 15 lbs. after surgery, by the time I got home. Now, I've lost 5 lbs. of that. I will be glad when I at least get back to my pre-op weight.

I'm feeling pretty good. I'm still sore some, but each day is still getting better. Now, I'm off to bed! It's been a long day! I should have been in bed hours ago!

New milestone

2009-06-02T15:05:00.000-05:00

So many things we do, each day in life, we don't give a second thought. We take it for granted, because we have always been able to do it. You don't realize it until it is taken away from you.

This morning, I read 2 chapters in a book! Big deal, right? Yes, it was! When you have Cushing's, you get this foggy brain, and there is really no other way to describe it other than foggy brain. That's what we all call it. You can't concentrate, you forget things very easily, and your comprehension is down.

I've always loved to read! I had noticed it was hard for me to read things. I had to really concentrate, and even then, it was hard to comprehend what I was reading sometimes. Some days were better than others, but overall, it was hard, always. When I went to California for testing, in 2007, I bought a new book to take with me to read. I had not read a book for a long time. For the most part, I'm just too busy, but it was also more than that. I had gradually lost interest, and really had not realized it for a while. When I tried to read that book, I only got to about page 3, and even then, I had to read it over and over, and realized I still was not comprehending what I was reading. My mind was thinking of anything and everything else while I was reading! I suppose it's similar to what an ADHD person experiences. I gave up on the book. I tried once or twice after that, and the same thing happened.

So, this morning, I got up to take my medicine, and I was hungry, so I got a bite to eat, and I'm awake for a while. I read my Bible, and then I was looking in my end table, and found that book. I decided to give it a try. I read to chapter 3! Not page 3, CHAPTER 3! I remember what I read. It was not totally without difficulty. I had to focus to learn who the characters were, and how they related to each other, but overall, I got it, and it stuck! Before, I just couldn't make myself do it!

I've never considered myself a genius, but I always got good grades in school. I have always enjoyed learning. Our entire life is a learning experience, and I feel like a sponge, trying to soak all of it in! It's very hard for people with Cushing's because you feel like you've been "dumbed down" for a lack of better words. I would always think this must be what it felt like, on some level, for my dad, when he had Alzheimer's. He was a very smart man, and he lost his thinking skills and his ability to comprehend. I know it was very frustrating for him, and scary. I felt the same way, until I realized mine was from Cushing's, and I knew once I got rid of the Cushing's, I'd get rid of my cognative problems.

It became very hard to spell. I was always a good speller, before Cushing's. Suddenly, I would spell words, and they didn't look right to me. I'd try a different spelling variation, and it didn't look right either. I'm talking about words we have known all of our life, and should come easily to us. You look at it and it looks like a foreign language to you. That's just so bizarre, and until you experience it, you probably can't comprehend. We end up having to think of another word, that means the same thing as the one we want to spell, but pick one we do know how to spell. It is very frustrating! When I get to typing really fast, I sometimes type words completely backwards, or I scramble the letters and make a whole new word. I usually see my mistakes, and correct them before I hit send, or publish, but I still miss a few! In speaking, I've created new words that don't exist. They just come out of your mouth without thinking about it. The excess cortisol does something to our brains, plus, having a pituitary tumor could have something to do with it!

Maybe that will help some of you to realize how much joy there is in reading just 2 chapters in a book! Try to never take the small things in life for granted!

One week, one day post op

2009-05-28T22:24:00.000-05:00

I posted this on the Cushing's site, but I'll post it here too for my friends and family and anyone else who reads my blog, but does not see the Cushing's site. Plus, it saves me spoons to just cut and past. That remeinds me, I need to find the "Spoon Theory" and post it on my blog. It's good for everyone to read, so you understand what it's like for someone with a chronic debilitating disease. Anyway, here's my next post.

I'm 1 week and 1 day post op. I had my follow up with Dr. Chiang today. He is THE most awesome doctor I have ever experienced. It's hard to compare. I have had other really great doctors too, and even though I didn't have Dr. McC, I know he is awesome as well. So, I'll just say he is MY most awesome doctor! When we went in, I remembered my camera! I almost forgot to take it with me! I've forgotten each time I've seen Dr. F. and Dr. J. Anyway, today, I had my picture taken with Dr. Chiang. I'll have to put it on here, after I'm home. I will share pics, but I can't right at the moment. First, let me tell you, I'm very emotional after this BLA. It's not depression, or even messed up hormones. It's just the pure realization that I just survived Cushing's, and I'm facing a life full of possibilities again! I'm full of gratitude, relief, hope, joy... hard to put into words. I have felt, emotionally, as if I've been holding my breath the whole journey with Cushing's. We have no guarantees, and we don't know what will happen the next minute. Anyway, I had my husband take the picture, and he took too long. Before he could get it snapped, my eyes started to swell with tears and I told myself I was not gonna cry. Yeah right. That never works! LOL! I didn't break into a full out tear thing just at that moment. We were done with the picture, and Dr. Chiang was chatting with me a few more secs and he asked if I needed anything else from him. I said no, and I just burst into tears and said, "Thank you!" He started chuckling and gave me a big hug and told me I was welcome! What a sweet guy! He's not just a surgeon. He's so humane! Of course we all know he is, but it's just really hard to put it all in words how good he is, in so many ways. Ok, enough of the mushy stuff. My path report was back, and Laverne and Shirley kept somewhat of their girlie figure. They had both gained some weight, but not real bad. Of course, the Keto I took before surgery probably helped to shrink them some. The left one (Laverne) was 7.3 grams. Normal is 4-6, so not too bad. The right one (Shirley) weighed 7.9 g. and had hemmorhaged a bit. It was an area of 1.0 cm at the greatest dimension. No nodules or masses were found in either of the girls. Even though they were not overly abnormal, he said it was still what was needed to get my over production of cortisol stopped. So, I guess maybe both of them had a few too many milk and pepsi's. LOL! This was the aboslute roughest surgery I have ever had. I am guessing that my body always gave me excess cortisol before. Can't do it now! Ha! The other problem is, I have found out with this surgery, more than any other before, I'm allergic to almost ALL of the "good" pain meds. Today, he gave me Demerol. That worked good for me in the hospital. It's just not long acting, and it makes you drowsy (very). However, I need that for better healing. So, Demerol it is. My inscisions all look good. I got my bandages removed today. I'm still so sore, and have some big bruising (I don't know how it compares to others, but it's big to me, LOL!) My weirdest thing is my stomach is numb in the front. He was stumped with that, but I have had at least one other person tell me they had some numbness after their unilateral adrenalectomy. I'm hoping that will come back soon. He thinks it will. Not only is it numb, but it stings because it's not totally numb. It's kind of in that twilight area. I don't know if I've lost any weight or not. At this point, I don't even care. I know it is coming. It is really the least of my thoughts. I'm just absolutely about to burst at the seams for the way I feel. I don't know how to divide the mental aspect from the physical aspect. They go hand in hand somwhat. I'm sore, that's for sure, and in that reguard, I don't feel too well yet. The first few days were unbelievably hard. I assume that's mostly because of my pain med issues, and my enormous gas bubbles in my shoulders. Those things will bring you to tears faster than anything! Each day gets better. Melly told me (before surgery) it's like this. You get about a teaspoon more of energy each day, and I think that is the most accurate way to describe it! Each day I am stronger, I feel better, I have a bit more energy, but the blessed part of it is, it lasts all day (for me anyway). When I was cycling, I was all over the place all day long. I might feel better for a little bit, but lose it quickly. Now, I'm not, I'm constant! Each night I go to bed, I tell myself that tomorrow I'm gonna feel even better, and I do! I don't just wish and hope for it. I know it's a fact and it is going to happen. I know there will be bad days. I still have to wean, and of course we are not immune to flu and such, but over all, I know I'm getting better, and it's only going to keep improving! I have joy again! That zest for life. The first few days, I can't say that was there. It was just too rough to deal with pain and getting to the toilet and getting any sleep. When I had Cushing's, I went to bed knowing tomorrow would be a bad day, I just didn't know how bad. It might be "better", but my "better" was just to a lesser degree of bad. What I have now is awesome! I have some improvements already. My skin tone is better. Not so red, bumps disappearing. Sleeping better, even with the pain, no jolting awake, no HELLFIRE racing up my throat and choking me in the night, improved blood pressure (even on my hydro!), my face has slimmed some (I think), my husband says my stomach is hanging more (meaning it's shrinking and dropping further, it's a compliment, I promise!)... I'm sure there are others I'm not thinking of right now. I'm currently on 50 mg. of hydro. Dr. Holmes will start my wean when I see him for my follow up. I take 20 mg. at 5 am, 20 mg. at 11 am, and 10 mg. at 5 pm. It's my own dosing schedule. It works good for me. The florinef has not made me swell bad, so far. I'm not nauseated, and struggling with that yet, thankfully. You know me, I'm gonna get that tape measure out and the camera, all through this journey back to health! I'm forever grateful to MaryO for supplying a means for me to have access to wonderful information, and finding friends I would have otherwise never known. I'm thankful for each of you. For being a voice on the other end of the phone, a cheerleader on the down days, when my posts were not so up beat. I love my Cushing's family with all my heart! You all are so dear to me! See... I'm getting mushy again! I have no real words, enough, to thank my wonderful husband for sticking by me through all of this! He gets it, and he helps me! Most of all, I'm so very thankful to God, for seeing me through each day, one day at a time, and getting me to where I am now.

6 days post op

2009-05-26T13:40:00.000-05:00

Today is a better day. It's pretty exciting to go to bed at night, and know that the next day you wake up, you are going to feel even better!

Last night, my stomach was so sore... I can't even describe it, really. My voice was shaking as I was trying to get myself laid in bed, and tell Andy how bad it hurt! If I lay on the one side, it's not bad, but you know, it is not comfortable to lay in one spot all the time. If I try to turn over, it hurts! I feel all of the organs inside my body, shift. They get stuck on my ribs and such, and it is the grossest and most painful feeling.

I have pain pills, but I don't take them often. Pain pills do not seem to agree with me too well. They do help, so I do take them occasionally. I usually reserve it for bedtime, or naps. When I woke, to take my morning medicine, I decided I would take another pain pill before going back to bed. I decided to check for messages on the computer first. I was sending a message to someone, and started feeling really light headed and faint. My hearing on the left side was muffled or gone. I had to hurry up and get laid back down. Some pain meds make me itch. This one does a little bit, but not as bad as the Percocet. I really liked the Percocet, other than itching. It never made me feel dizzy or any of this stuff. Tylenol 3's make me feel light headed and icky. The crazy thing with this Vicodin is, one time, it will make me a little bit itchy. The next time, it will make me light headed, muffled hearing, etc. I think I have a different reaction to it each new time I take it. I really think Ibuprofen works the best for me. I just don't know if I can take that. It's a blood thinner, and I wouldn't want to start any internal bleeds.

I've had 5 babies, the first 2 with no pain meds, the last 3 with epidurals. I've had a cyst removed from the outside of my ear, a deviated septum fixed, a hysterectomy, and brain surgery. Nothing has hurt me as bad as this! My best guess is that I had excess cortisol all the other times, and that is what helped. At any rate, I'd do it all over again. It's absolutely been worth it. Each day that I feel better, is so exciting.

Post BLA surgery

2009-05-24T15:19:00.000-05:00

I'm 4 days post op, now. Each day is better than the previous, but I can tell it will be slow going. I know some people have said that the BLA surgery is easier for them than their pituitary surgery. My pituitary surgery was a piece of cake. This has been worse for me, by far. I will not lie. This has been the most painful surgery I have ever had. It was worse than my hysterectomy, but that's just me. I suspect that is because I had Cushing's with each of my other surgeries. It would have made my body put out extra steroids. I believe that would have helped me with each surgery or birth, to feel better. Now that Cushing's is gone, I don't have my body putting out extra steroids now.

I'm still on high doses of steroids, so it will be a while before I see a lot of the positive changes. My face is already looking better. I have lost most of the redness and it looks slimmer to me. That is probably all I will see for a while. Right now, I'm on 50 mg. of hydro each day. I will start weaning once I see my endo, which is June 11th. I feel pretty good, so I'm not looking forward to the weaning process. I imagine it will be pretty hard. It's something we have to go through though.

The gas pains you get from being blown up with air are unreal! They lodged in my shoulders, and it felt like severe muscle spasms. I was near tears, and biting my fingers. I'm usually good with pain, but that part was very bad for me. Pain killers don't help that kind of pain. Gas-x does, but you can only take a certain amount of it. They don't give you those at the hospital anyway. Thankfully, those gas pains are mostly gone. I'm still having them some, 4 days post op, but they are much better.

My right side is sore. I finally slept in the bed some. I've spent the first several days sleeping, sitting up on the couch with pillows stuffed all around me. That is not real comfortable, and I can't sleep for long periods of time. Now that I can stretch out in the bed, I'm getting a bit more restful sleep. I still don't sleep for very long stretches of time though.

I have seen definite improvement each day. I know that each day IS better than the one before. It's just going to take a long time to be totally well and healed.

There was a fire alarm that went off in our hotel a few days ago. I was sitting on the couch, taking a nap, and this thing goes off! It was blaring loud and I came straight off of the couch! We left the building. All I had on was my night gown, robe, and socks. We went to McDonalds to pick up some food and took a drive. I think that ate up some of my cortisol pretty quickly, but I did ok. I think the person working the drive thru was wondering why I was not dressed. LOL! If they only knew!

I have a surgery date!

2009-05-07T01:23:00.000-05:00

I felt like I was never going to get to my second surgery. I finally have a date of May 20th, at 1:15 pm. I can't wait! I'm so sick and tired of being sick and tired! I feel this surgery is coming none too soon. I hurt so bad, just to sleep. My shoulders have been hurting lately. My hips hurt, right at the joint. My foot hurts, my hands, etc. I feel like I'm falling to pieces. I feel worse this time than I did last, in some ways. In others, I felt worse the first time. This time, my bp has been more stable, and the first time it was a real mess! This time, my sugar has been wacky, and last time it was ok. This is one crazy disease! I just can't wait until it's all over.

Of course, I wonder if it is ever really "over". We have to deal with the aftermath of Cushing's sometimes. The longer you have had it, the more damage it has done to your body. Those high doses of steroids can be masking things you don't even know is there, until your cortisol is normal again. It's not an over night cure. It's more of a process over a year or so, to get back to normal.

Honestly, I just can't imagine what it's like to be normal again. I have not been normal for years. LOL! Seriously! My mind cannot fathom what it feels like to feel good for the majority of the year, and only have a few sick days here and there. Right now, I feel sick the majority of the year, and only have a few good days. It will be such a change. Then there is learning to live life without adrenals. I'll have to learn what my physical limitations are. I use to be superwoman. I use to work, work, work my head off. I'm sure I will have to learn to scale back, even when I feel better, because it eventually catches up with you. It's not just, "Oh, I'm achy and extra tired." When you have no adrenals, overdoing it can land you in the hospital. It will be an adjustment period for quite a while. I'll have to learn how much extra medicine I need to take when I get sick, if I have an extra busy day, etc. Lots to adjust to, but I'm looking forward to all of it!

It's just peanut butter....

2009-05-01T06:24:00.000-05:00

A couple of days ago, we were outside working on starting a garden. I do more sitting and watching than anything. I'm pretty useless at this point. Anyway, my youngest, Zane, looks in his big sister's ear. He says, "Eww!", and he turns her head toward me like I can see it from where I'm sitting.

I asked him if her ears were dirty and he said yes. Then he stuck is finger in her ear and starts twisting it around. I said, "EWWW ZANE! That is gross! You don't stick your finger in someone's ear and start cleaning it out!" He said, "Aw, it just peanut budder! I don't know how it got in there, but it just got in there."

Where do they come up with these things?

CLEARED FOR SURGERY! YAY!

2009-04-23T22:20:00.000-05:00

I was hoping this was going to be the title of this post! Yay! What a relief! That down side is, it didn't come from the doctor I had hoped it would come from. Anyway, I now have a new doctor that is within driving distance who is very good with all of this Cushing's stuff AND the other hormonal issues. That means I now have a one stop doc. I don't have to deal with two separate doctors for everything now. I really liked my other doctors, but they were not on the same page, and I was tired of being the book mark (stuck in the middle).

My new doctor looked at all of my labs since surgery, my pathology, surgical report, etc., and decided that I was ready for my next surgery... a BLA. He and I are on the same page about all of this.

So, I will be having surgery in Wisconsin with Dr. Chiang. The bad part is, my husband is called for jury duty for the month of May. Hopefully he won't have to go, but he won't know until the day or so before jury duty. At any rate, I will be getting surgery soon, whether in May or June.

I'm ready for a life free of Cushing's! I can't wait!!

Thank you all, for your prayers. I know I had lots of family and friends praying for me, and I really appreciate it.

New news...

2009-04-10T02:54:00.000-05:00

I found out something new. After my pituitary surgery, my pathology never said that they tried to stain for ACTH. I finally got around to calling them and asking them to stain it for ACTH. They should do that automatically. One of the resident doctors at my surgeon's office was in shock that they never stained it. When I told him, he had it pulled right away and had it stained.

Well, it stained positive. I knew it would, given my high IPSS results. BUT... here's the kicker. My surgeon had said in my report that he first went in the left side since my MRI showed what he thought was tumor on the left. My IPSS said on the right. He didn't find anything abnormal on the left, but he took a sample and sent it to pathology. They said it was normal (but now I know they didn't use ACTH to stain it!). Then, he went in the right side, and didn't see anything at first, but kept exploring, and found it on the posterior of the gland. He removed all of that and sent it on a slide. Now that they have stained them, BOTH slides stained positive for ACTH. That tells me I have HYPERPLASIA! There is nothing on the report that says hyperplasia, but I'm smart enough to figure that out, given the detail of my surgeon's report. He described where he took the tissue from, and what it looked like (normal, abnormal, white, tan, pink, etc.).

That makes me feel better about the BLA. I've known that is what I need. I've been tempted at times to go for the second pituitary surgery, just to get relief, but in my heart of hearts, I knew it wouldn't work. Now I REALLY know it wouldn't work. When you have hyperplasia, that means the bad cells are spread out, through out the gland, and you would never get all of them. They are basically sitting there waiting to become a tumor. I'm glad I held out for the BLA. Now, I just need to get the clearance. I think I'm close. I hope and pray it's soon! I'm so tired of dealing with all of this.

The Keto has been helping, but I'm still cycling. It doesn't stop that. That means sometimes it works really good, and sometimes it doesn't. Sometimes, I dip too low naturally, and I have to quit taking it for a bit. It's still a balancing act, but it does make me feel better than I feel without it! Most of the time, I never am low enough to even take the hydro with it. I has helped me lose 8 lbs and 8.5 inches, so I know it's working. I do bounce up in down in weight though, because I'm still cycling.

I'm hoping my next post will say, "CLEARED FOR SURGERY! YAY".

This post is late....

2009-03-26T09:36:00.000-05:00

Before I made that last post, I should have posted this, on our anniversary. I've just been too sick to care about anything.

My husband and I celebrated our 19th wedding anniversary on the 24th. Not so much celebrating though. I was sick! We did go away for the weekend. We went to Amish country for a couple of days. On Saturday, we walked around in 3 shops. Maybe 20 min. max for each place. It wore me out so bad! By that evening, when I would get up to walk, I could hardly move. I suppose that was the lead in, to the previous post.

Anyway, I really was not wanting to go anywhere this year. We usually try to get away for a day or two, for our anniversary. We have had so much medical expense, and since I'm facing more surgery, I didn't want to spend the money. He still wanted to go away, so we did. I just wish I had felt better to enjoy it more.

My husband is a great guy! I'm so blessed to have him for my husband! SO MANY of my friends who have/had Cushing's, go through a divorce. Of course, other people do too, but the sickness really wears you down and really works on a marriage.

I use to be like superwoman. I always had my house clean. It was always ready for visitors if anyone stopped in. He use to tease me and call me a neat freak. He doesn't get "neat freak" any more. Now it's more like "super slob". The kids help out, but they also make messes. I don't have the energy to stay on them to keep it up all of the time. When you have little kids, it's hard to keep the house neat. It has to be worked on ALL the time to keep it neat with little ones around. The older kids get upset because they clean it all up, and the little ones end up tearing it all out again.

After my pituitary surgery, when I got to feeling so good, I got this house really clean, and really organized again. He said he could tell I was doing so much better because the house was clean again, like I always use to have it. When the symptoms came back, and everything started going downhill, so did the house. He never complains about it, and I'm grateful! If it really bothers him, he will pitch in and help do stuff.

I think a lot of the spouses of Cushing's patients get so tired of the medical issues. I hear that a lot, that the spouses say they are tired of the drama. I try not to complain too much. I don't want to be a drag. However, I can't pretend I'm not sick. I physically and mentally don't have the strength to pretend I'm not sick. I did that for years. I'm beyond that now. It is what it is. I'm so thankful that my husband accepts that. I know when we got married, he never counted on going through all of this. Nobody ever does. A lot of people bail. He's stuck with me through it all. I'm hoping I'll be cured by my 20th anniversary, and then we can REALLY celebrate!

My husband is the love of my life. We dated for almost 2 years before we got married. We married at 19. Most people would never dream of getting married at 19 and expect it to last! We've had ups and downs, as anyone does, but we never fight, and we still love each other. That's saying a lot these days! Before I was married, I prayed and prayed for God to show me who he had intended for me. Some people don't believe in that, but we do. We felt that we were meant for each other. It's still working, 19 yrs. later. God helps us each day, to love each other, to make it through the bad times, and to trust in him. I'm so thankful that He gave me Andy!

Two weeks after starting Keto

2009-03-26T09:16:00.000-05:00

The first week was great! I felt so much better, and I lost 1 lb. per day. Close to starting the second week, I quit losing weight, started getting hot flashes, red face, high blood pressure, huge zits, etc. During that first week, people had noticed that my face was not so red and my overall complexion looked better. I felt so good, I had to remind myself that I wasn't cured, I was just taking Keto!

I quit taking the morning dose of hydro, since I had so many high signs. I kept taking the Keto, but I continue to have the hot flashes, red face, etc. The last several days, I've had a killer headache. Just rolling over in bed made my head feel like it would blow off. It hurts at the base of my skull, and across my forehead. Light and movement bothers it. I don't know if it's the change in weather (that sometimes does it for me) or if it's Cushing's related, or something else.

My back muscles have been aching really bad, like when you have the flu. That is the only indication I could say might mean my cortisol is too low. I weighed today, and I lost more weight again. Yay! I'm down 7 lbs. since starting the Keto.

I didn't take the Keto last night, and I took the hydro this morning, to see if it would help with the pain (maybe I'm too low?) Nope! All it did was give me immediate indigestion! I've had that bad in the past week. It's also giving me more hot flashes. Nice!

I don't know if I need more Keto or what. I'm almost afraid to go higher because of my cycling. I would ask my doctor first, before going higher. I know that around the beginning of every month, I go low, and hurt all over. I don't know if maybe the Keto threw me off schedule, or by the first of April, I'll go REALLY low. I don't want to end up with AI.

All I do know, is that I AM getting a response to Keto, and that's a good thing. I also know I need to see my chiropractor. I'm out in lots of places. He is on vacation this week. Nice! I have to wait until Monday to see him.

The Keto is making the facial hair fall out. I still have some, but it is not nearly as thick as it was. The bad part is, I'm also losing more from my head. That's NOT a good thing! Sometimes I wonder if I'll have any hair left by the time I get all done with this stuff!

Started Ketoconozole last night

2009-03-13T06:19:00.000-05:00

After talking to Dr. F. last, I decided to try to get just a bit more testing in, in hopes of catching a few more highs before starting the Keto. I don't have all of the results back yet. It will be a while on that.

I was nervous about starting the Keto. I cycle so rapidly with Cushing's, that I've worried about how the Keto might work for me. As it is, when I dip low, it's really low for me, then add in the Keto,.... it makes me worry about AI. Aside from all of that, I've been anxious to get it started. This last week has been a doozy for me. I went from sleeping most of a 24 hr. period for several days, to being awake for most of a 24 hr. period. Whatever it was (I've never figured out my highs and lows), I tested through all of it! I did midnight serums and 24 hr. UFC's. I'm hoping to at least get some high 17-Hydroxycorticosteroids out of it! I do know that one of my midnight serums was 5 something. Not high enough, but it's still in the elevated range. I finished collecting my last UFC yesterday morning, which was Thursday.

So, last night, I started my Keto. Being the chicken that I am (about this), I decided to ease myself into it. I am suppose to take 200 mg. at bedtime. (On my bottle, it says to take at 9 PM. I'm glad they defined "bed time" for me! LOL! Since mine is so sporatic, I don't know what "bed time" is.) I decided to start out with 100 mg., and see how I do on that, before going to the 200 mg. So far, I like it! Within 15 min. of taking it, I was getting tired! I also started getting colder. I wasn't chilling, just cooling down. With Cushing's, I tend to run on the hot side. I went to bed around 1:30 AM. That's pretty good for me! I did wake up early this morning, though. I decided to get up, since I was awake and feeling pretty good, and take my medicine. I took 15 mg. of hydrocortisone, my thyroid medicine (I'll talk about that later) and my GH shot.

The only side effect I had from the Keto, so far, was diarrhea. Not bad, not the stomach killing you type of stuff, or being married to the toilet for the night. I can deal with this! I took my bp last night too, and it was down from what it had been running. I hope the Keto and I keep getting along like this! I feel more calm, and like I have more energy. I think the reason I started getting tired was because of it calming everything down. I have felt like my body and brain have a lot of commotion going on lately. I told my husband I wish someone would just unplug me! It's hard to explain. When I would try to go to sleep, in the last several days, I would lay there, tired, but wide awake. I told one of my friends that I might be able to sleep if the voices in my head would shut up long enough! LOL! I don't really hear voices, but what I mean is, it's like my brain is on fast forward. I have everything running through my head, and all at once. I have to wonder if that is what it feels like to have ADHD, or ADD. I never use to be like this. I mean, before Cushing's. After surgery, it went away. I felt nice and calm again. This was another sign for me that Cushing's was back.

I believe in my last post, or maybe before that, I mentioned that my local endo was afraid to give me a higher dose of thyroid meds. She was worried that my adrenals might not be able to handle it, and that it would throw me into an adrenal crisis. She had reasons for feeling that way, and she's not totally off the mark. My AM cortisol numbers are low, so with just looking at those, it looks like I am adrenally insufficient. The problem is, that I still have Cushing's. This means I have higher cortisol at night, or at different times throughout the day, but she is not seeing that from a morning level. My levels are flipped from a normal person's, because of the Cushing's. So, I talked to my CA Cushing's specialist about this. He told me to start on 100 mcg. of Levoxyl. He is not concerned with the possibility of AI. Besides, if it were to happen, I have the hydrocortisone pills, plus my emergency injectible if I need it. I started on the Levoxyl and I've had no problems from that either. Now that I'm adding in Keto, it does concern me. I worry that if the Keto drops my levels too far, that the higher dose of thyroid medicine will make me go AI. That's another reason I'm easing myself into this. So far, everything is getting along! It's too soon to tell for sure, since I've only taken the Keto once, but so far, so good!

Finally, an update

2009-03-04T00:34:00.000-06:00

It's been a long time since I have posted anything. I have been feeling terrible, and that is putting it mildly!

As of late, I've been almost unable to walk! My joints have hurt so bad, I just couldn't even describe it. The problem? My thyroid.

I had been back to my local endo, and we know that my thyroid is low, making me hypothyroid. She has me on 25 micrograms of generic Synthroid. Acutally, she never said it had to be generic. If I remember right, the pharmacy asked me if it could be generic, and I said yes. Anyway, she said she couldn't raise my dose because she didn't think my adrenals could support it. My morning cortisol, last time it was tested, was at 1.8. That is very low. She admits that all of my numbers confuse her. LOL! Poor woman! I'm giving her a work out! Anyway, my Free T4 is at .7, which is the bottom of the "normal" scale for that level, and that is with me being on some thyroid medicine. It's a low dose, but it IS something!

Anyway, I tried taking my hydrocortisone (hydro for short), to see if it helped. There was an off chance that my joint pain was from being too low in cortisol. I took hydro and all it did was give me indigestion! It didn't help with the joint pain in the very least! That confirmed to me that it was from my thryoid, not my adrenals not working right.

I have higher tests at night, sometimes, and I still have symptoms of Cushing's. I'm gaining weight, etc. I spoke with my Cushing's specialist in California tonight. He is putting me on 100... not sure if it's micrograms or milligrams of Levoxyl for my thyroid, and he said to make sure it's name brand. No generics.

As for the Cushing's, well, it's plain to see I have physical symptoms of Cushing's, and I have labs that are high, but not diagnostic yet. I'm so cyclical, it's hard to get the high numbers I need. I've had a follow up MRI and it showed nothing. So, he said I have 3 options.

Option #1. I could go back for more pituitary surgery. They could take out a bit more where they removed tumor before, and hope that they get the extra cells that are causing problems. This is not an option as far as I'm concerned. I know the risk of a CSF leak (cerebral spinal fluid) are much greater on a second surgery. I also know the percentage of a cure are very slim. Well, slim to me anyway. I know that it almost guarantees that I'll have more pituitary function lost. I'm not willing to go down that road. In my heart of hearts, I believe my problem lies in my adrenals, not my pituitary.

Option #2. I could have a BLA (Bilateral Adrenalectomy, where they remove both adrenals), which is what I want, but I need to get more high results than what I have so far. I am so cyclical, I don't know how many more months it might take to catch my highs.

Option #3. I can take Ketoconazole. It is an antifungal drug. It is also used in Cushing's patients sometimes, to lower cortisol. It is not meant to be taken long term, in most cases. This should give me relief of symptoms. I'll also have to take 15 mg. of hydro in the morning. I'll take 200 mg of the Keto at night, before bed. We might need to play around with the dose later on. Lots of people find relief with this route. It sort of induces a chemical BLA, without actually taking out the adrenals. If the results are favorable, then a BLA should work just fine. If it doesn't yield any relief, or improvements, then having a BLA probably won't either. Keto, taken at high doses, for long periods of time, can cause liver damage, BUT, I'm told that when it is stopped, the liver "damage" leaves and it returns to normal. Since I'm not going to be on real high doses, I shouldn't have that problem.

I chose option #3. I'm not real keen on taking Keto, because of the liver issues, but he made me feel better with what he told me, and I want RELIEF! Honestly, I feel so bad, I can't put it into words. At least not any that are nice and that I'm allowed to say. Since the beginning of the year, I have went straight downhill, and it just keeps getting worse! I figured that this is the best route for me to go. I will get more immediate relief, and it will show us how a BLA would do for me. I'm not certain, but I think that if this proves to work good (I feel better and start losing weight on it) I can then go on to the BLA. I'm not sure if I will still need to do further testing or not. Right now, I'm not worried about it. I just want to feel better! I can't wait to feel some resemblence of normal again!

MRI report is back!

2009-01-21T02:39:00.000-06:00

This is going to sound weird to people who just don't understand all about this disease. I got the radiologist's report back on my latest MRI. In short, they don't see any tumor. That doesn't mean I don't have Cushing's, it means they don't see any more tumor THERE to be taken out.

The nature of the beast is like this. You can have different types of tumors. There are ones they call ooey gooey tumors, that are similar to snot, and just kind of run everywhere. There are well formed tumors (mine was) but they are not always easy to get either. If one cell gets left behind, it begins to grow again. Some of these tumors have tentacles on them. They are very tiny, and not easily seen. My surgeon took extra tissue around the tumor, and thought he got all of it, but they can't see those tentacles, or how far they might go within the gland.

I was hoping they would not see any tumor regrowth. That would have meant that my endocrinologist would have wanted me to go back for another pituitary surgery. If they didn't get it all the first time, who's to say they will get it the second time? The second time around you have more chance for what is called a CSF leak. It's cerebral spinal fluid. No thanks! Since they are going in and just hacking away at the pituitary, hoping to get any tentacles they missed, you end up with hormone losses. That's a mess in my opinion. At this point, most of my hormones are fine, and I want to keep it that way. I don't want to balance every one of my hormones for the rest of my life!

So, since they don't see anything to go after, this means I can have a bilateral adrenalectomy, also called a BLA for short. With the BLA, they take out both of your adrenals. That cuts the feedback loop and stops the excess cortisol that is causing Cushing's. There are "complications" associated with this surgery as well, but they are more favorable to me. If you still have tumor on/in the pituitary, and you have a BLA, there is a chance that the tumor can start growing rapidly. If it does, then you have to either have another pituitary surgery to debulk the tumor, or have something like the gamma knife radiation. You can also develope Nelson's Syndrome. With that, your skin gets dark when your ACTH levels go high. Sometimes you just look tan. Other times, you look dirty and splotchy. Personally, I feel so bad, I don't care if I look like a spotted leopard! I just want to feel good again. Everyone has different feelings about our options and what is best for us. We are all different. This is what I think is best for me.

Once you have a BLA, that means without adrenals, you have NO cortisol. Everyone has to have cortisol to live. It's not an option to not take it. If you don't take it, you WILL die! You can't take it whenever you feel like it, you can't run out of it and pick it up when you get around to it. That means, you are one pill away from death at all times. That is drastic, but it still sounds better to me than to go through another pituitary surgery, end up with a CSF leak, lose a lot or all of my hormone function, and still not be cured (this happens a LOT)! So, I'd rather just skip to the BLA. I've lost too much of my life to this already. I don't want to spend more years of failed surgery, testing again, another surgery, etc. I just want to be done with it, and this is the best way to do that.

So, where does that leave me right now, at this moment? Well, I am testing again, and when I get some good highs, I can move on. My doctor made it sound like I won't have to do a lot of testing. He really wanted to get the MRI report. He would like to see some more highs (I think), but the ones I already had were high enough that he agreed that I still have Cushing's. I hope I don't have to test and test forever to get super high highs again. I've already went downhill so fast, it's not funny! I was feeling decent at the beginning of Dec. By the end, I was starting to feel pretty bad. When the new year hit, I hit rock bottom again! I feel like I'm back at square one. Everything that I'd seen progress on, is back to the same ole, same ole! Not good!

I rode a scooter!

2009-01-15T12:16:00.000-06:00

I haven't updated my blog for a while, because there really isn't anything new going on. The most recent development is that I've given in and rode one of the scooters at Wal-Mart. I've looked at them many times. I'd stand there and eyeball them, wondering when I'd have to ride one. I'd feel like I had enough energy to make it through the store, only to find myself in an aisle, wanting to cry and lay on the floor, from pure exhaustion and weakness.

Last night, I went to the grocery store. We have had some major snow here. We didn't have church because of the weather, and I REALLY needed groceries, so I went out to get some. I got the Kroger sale items, and headed to Wal-Mart. Once inside the store, and not far from the front, I knew I was going down fast. I didn't know how I was going to make it, as I was needing to go through the whole grocery section. I told Ciera that I wished I had a cart to ride. She suggested I get a scooter. I didn't want to do it. I said, "No, I don't know if they even have any up there." Well duh! It's late at night, there's a major snow storm going on, and there were MAYBE 10 people in the whole store shopping. She said she would go get one for me and bring it back. I didn't want her to do that, so I walked up there, and asked the man how to use it. That was embarassing! I felt awful. I know people look at me and don't think I'm sick, because I don't LOOK like I'm sick. What I feel inside is something totally different than what people see on the outside. I felt like collapsing, so I broke down, swallowed my pride, and rode a scooter.

I'd put off riding the scooter for a long time. Actually, I was about to ride them, and then I got my GH replacement, and that helped me tremendously. But, when the cortisol goes high, or other things are out of balance, it doesn't feel like I have any GH in me. I am very weak! After surgery, I was doing so good, and didn't need it. I didn't even consider it, except maybe the first time or two out at the store, right after surgery. But, even then, I made it ok just walking.

It feels like defeat to give in and ride a scooter. I feel like I'm always trying to stay a step ahead of this disease. I don't want to let it win. Riding the scooters made me feel like the disease won. I know it hasn't, but I'd hoped I'd never be this bad again before getting back to surgery. Once I started going downhill, it went fast! Everyone tells me that your highs are higher, and your lows are lower. I think it's true. Once the New Year hit, I went into a low! At first, I didn't know what was happening, because I never felt that bad in a low before. I'd felt like I had high sypmtoms during our winter Campmeeting. I couldn't test because we were gone. Once I got home, I tested, but I'd missed the high. I was going lower on the tests. Then, it hit my bones and muscles. I can't even describe that kind of pain. Just imagine having a very bad flu, and that's about what I felt like. I didn't feel sick to my stomach, but I had joint and muscle pain.

Now, I am starting to feel better, pain wise, and I feel like I'm coming up out of that low cycle. I'm waiting for the next high to hit, and hoping I will get some really high numbers so I can get back on a surgery table somewhere. It's pretty bad when you WANT to have surgery. I just want to feel better! I felt sooo good after surgery. It just didn't last long enough. I'd hoped I wouldn't get this bad before being rediagnosed, and getting another surgery. Wishful thinking, I guess.

It's 2009!

2009-01-01T18:18:00.000-06:00

I sure am glad 2008 is over! I'm hoping 2009 will be a better year! I had another MRI on Wed. morning, the 31st. It was my last big bang on that good ole ins. card for 2008! Now we get to start all over for 2009. Yay! Not!

So, I am going to try to get a copy of the radiologists report, tomorrow. I hope they don't see any tumor regrowth. I'd rather move on to a BLA. I also need to get results to a lot of tests that I've done. If I can catch some really good highs soon, it will help move me on faster. I just want to be done with this, and feel better. I think someone gave me a free lifetime membership though.

I had a phone appt. with Dr. F. last night

2008-12-22T19:40:00.000-06:00

WELL.... I think it was a productive appt. I'll be having surgery again at some point. I don't know when yet. He didn't clear me for surgery, but agrees I'm having what they call a "recurrance". He told me to do some more testing, and to get another MRI, to see if there is any tumor regrowth showing up.

We discussed the pros and cons of BLA and Pituitary surgery. I'm still leaning toward the BLA, but in reality, there are no easy answers. If I still have some pituitary tumor left, and I have the BLA, it can cause the tumor to start growing rapidly and you still have to do something about it, like gamma knife radiation. It can cause you to have Nelson's. I don't care about the Nelson's. That's not an issue for me. Gamma knife would most likely kill large portions or all of my pituitary. I'd lose some or all hormone function.

If I have another Pituitary surgery, I could lose some or all of my pit function. Dr. F. feels that being panhypopituitary is better than having your adrenals out. That surprised me. I don't feel that way at all. I'd much rather balance taking hydrocortisone and florinef for the rest of my life, than trying to balance many, or all of my hormones for the rest of my life. Having hormones messed up makes you feel AWFUL, and it is hard to balance. I've watched people do it over and over. You adjust one hormone, and it throws another out of whack. You get it right, and something else goes whacky. It's too hard, if you ask me. There is a CHANCE I could be cured with one more pituitary surgery, but there is no guarantee. That would mean I could eventually be off of all hydro and be done with it. BUT, there is also the chance they wouldn't get it all, and I could still be facing more surgery. That seems to be more often than not from what I've seen. I've even seen people who were cured, come back after 5 yrs. or so with a recurrance. I'm not thrilled at that prospect at all.

His game plan is to see what the MRI says. If I have another pituitary tumor growing, he said he would recommend another pit surgery. If there is no tumor showing, then a BLA. He knows I prefer the BLA over pit surgery, and he understands why. He's basically leaving it up to me. He said to think about it for a while, do some more testing, and then we will see where we are once we get some more results back and whether there is a pit tumor or not.

So, that's where I'm at. It looks like 2009 is going to be another expensive year! Yay! NOT! I want to be done with this! The other thing with having another pit surgery is that if it doesn't cure me, I'll have to wait until I wean again, see where I'm at, do some testing if I feel I still have it, and then face ANOTHER surgery! I don't want to sign up for that program, thank you very much! It seems that there are no easy answers with this disease! I'm just glad that he sees what I see, and agrees it's a recurrance.

Almost 17 weeks post op

2008-12-17T01:16:00.000-06:00

Last Thursday, I went to see my local endo again. I ran out of gas going up the exit ramp! What a mess! I got out and started walking, and some nice lady picked me up and took me to my doctor's appt. She lived close to my doctor. I was so thankful that she stopped. It was cold outside!

My doctor seemed a bit baffled. All of my lab stuff looks good, so we can't blame anything on thyroid (she says) or any of my other hormones. My face and neck was getting really red while I was there. I told her to feel it, as it is hot to the touch. She asked if anyone had ever checked me for a carcinoid tumor before. I said no, so she wants that checked. It can be an ectopic source for Cushing's. It also goes along with MEN1. I'm doing a UFC for that test right now, and I'll do a blood draw for it tomorrow. I don't think that's what is going on. I sure hope not anyway! I don't want to have to go through Chemo! So, I'm hoping it just rules that right out, and I'll just be looking at dealing with regular ole Cushing's. It's bad enough by itself!

I've had a headache all day. A dull headache, that just bugs you. I hate it that I can't sleep right. I go to sleep, and get up off and on all night. When it gets closer to morning, I can sleep real good and stay in bed for hours without waking up then.

I have a phone appt. coming up on Saturday night with Dr. F. I'm wondering if some of my labs caught his attention. I had the ACTH stim test done twice. It was the low dose stim test. My cortisol almost quadrupled from the baseline number, the second time I had it done. The first time was more than double. I've read that a normal response is double. If it is higher than that, it indicates Cushing's. I think my quadruple response would indicate that I still have Cushing's!

I hope we can get it all figured out quick and just move on. I still feel better than I did before surgery, but not as good as I did after surgery. I'm feeling worse all the time. I dread going back to that place! I was almost in tears tonight, just because I've been feeling so bad, and I don't want to feel like this. I've had indigestion so bad, I've had to sleep sitting up on the couch! I just want to be normal and feel good. I can't wait to hear what Dr. F. has to say on Saturday!

Almost 15 weeks post op update

2008-12-02T23:21:00.000-06:00

I'm going to be 15 weeks post op tomorrow. I went to the ENT and got my scar tissue shaved out of my nose. It wasn't bad, but I'm glad it's behind me!

I called my PCP's office today, and talked to the nurse. I told her I wanted some orders to do some midnight blood draws and some 24 hr. UFC's with 17-OHCS in them. She said unless they called back and told me otherwise, the orders would be sent over to the hospital where I get the draws done. I never heard back, so I'm assuming they are there. Back to testing for me!

Hearing that others have lost 30 lbs. while still on 20 mg. of hydro, and I'm totally off of hydro and not losing anything, makes me think I'm not cured. I'm not jealous at all. I'm thrilled for them! We all have such a battle with this rotten disease, and any good news from any of us is something to celebrate about. I quit the hydro shortly after my 13 week mark. According to my doctor, and I've seen the labs too, all of my hormones are good.

The return of symptoms just keeps adding up. At first, they were more subtle and not very worrisome. Now, they are things I just can't ignore. More symptoms started popping up just in the last few days. My brown spots are getting very dark again. That tells me that my ACTH is high. They had pretty much faded after surgery. I had not really noticd them for a while, and yesterday when I looked in the mirror I about flipped! The one on my lip stood out like a sore thumb!

I hate Cushing's! I had high hopes that I was cured after surgery when I crashed so low. The lack of progress has sunk those hopes. I suppose there is still a slight chance that I do have a cure, but I'm not seeing it right now. I feel like I'm slipping back in time and I want out of this time warp! I really felt cured for a while! It was great while it lasted. I want to feel that again. So, I'll keep pressing on. Maybe my tests will be low, but I have a feeling I will see something otherwise. Time will tell. If I still have Cushing's, I hope I get highs off the bat!

13 weeks post op?

2008-11-23T21:28:00.000-06:00

I'm losing track of time now. I forget how long it's been since surgery. I think 13 weeks. I have not updated because there is nothing to really update. Everything is still pretty much the same. The only thing different is that now I'm swollen and sore everywhere. I'm not sure why. I am going to have to go off of several meds and see if that makes it better. I'm wondering if I have a build up of something I'm taking, that is causing this joint and muscle pain. I've been at 2.5 mg. of hydro for a while, and I've been just fine on it. In fact, I was due for a wean again, but I can't do it just yet. I'm going to alternate not taking anything, and the 2.5, every other day for this coming week. Then, I hope to be totally off of hydro the week after Thanksgiving.

I've been busy getting my house organized. It's so great to get things cleaned up and in order again. I can't wait until it is totally done! I still have to dig out all of the winter clothes for everyone. We've been digging through boxes as needed.

I still look about the same as I have been lately. Nothing much has changed that way. Once I'm totally off of all hydro, I think my doctor is going to put me on thyroid meds. She said if she gave it to me now, it could make me have an AI episode, and she didn't want to do that to me. She wants me off of all hydro first. Here are my most recent pictures.

11 weeks post op

2008-11-08T00:33:00.000-06:00

I'm a bit late posting for 11 weeks post op. Oh well! After my last attempt to totally wean, I went back on the hydro. I went to 10 mg. and that was too high. I went down to 7.5 mg. and stayed there around a week. I went to 5 mg. on Thursday. I'm doing good. I had that whole episode with the "low" feeling the day I had to go back to see my endo, but I later figured out a huge part of my problem was that I was having a reaction to the Levaquin. It took me a long time to have a reaction. The first 2 weeks were fine. Starting the 3rd week, (also when I weaned) I started having pain. I thought it was all because of the wean, but it wasn't. Going back on the hydro didn't take the pain away. It was the Levaquin! Going off of it took the pain away! So, I took all but 4 pills of Levaquin, which helped my sinus infection tremendously!

I have to go back in Dec. to get some scar tissue shaved down in my nose. It's part of the reason I have a sinus infection problem. My nasal washes are not reaching it good.

I haven't heard the latest lab results yet. I do know my endo is watching my T4, as it was really low in the normal range. I'm almost hypothyroid. She is watching that, but she said giving me thyroid meds while I'm still on the hydro could make me have an AI episode, and she didn't want to do that to me. So, she tested my TSH and T4 again last time I was in there. She told me to get back into the office as soon as I weaned totally, so she can do another adrenal stim test. What do you want to bet that my adrenals will stimulate after that big dose of ACTH? LOL! They did last time, so I don't see why they wouldn't this time too! Anyway....

I'm doing pretty good. Just the same old stuff. I had a headache today, and some diarrhea, feeling pukey... all that normal weaning stuff. It makes you feel yucky, but it is not intollerable. I also sleep alot in these times. I was in bed most of the day. I'll be so glad when I am totally off of hydro!

I really don't look any different than in my last pictures (I don't think). I haven't lost more weight, and that won't happen until I'm off of the hydro and get my thyroid straightened out. That's ok, I'm pretty patient. I'm just happy that I feel better. I feel consistant. Losing the fluctuations in blood pressure, and losing the heart palpitations were worth the surgery, even if I never had any other improvements! But I do! Ha! My fingernails are still going strong, and that is just unbelieveable! I've never had nails like this in my life! I've whacked them on all kinds of stuff, and they have not broken off! I'll have to take a picture of them before one of them breaks because all 10 of them are LONG! I'm kind of letting them go to see how long they will get before they break. LOL! I might just have to break down and shorten them though. My hair that is closer to my scalp is so much more healthy! It' soft, silky and shiney! I also have lots of little hairs coming in. It has gotten thicker. I have to use bigger hair barrettes than the itty bitty ones I use to use. I'll try to update with some new pictures soon!

So much for the "final" wean! LOL!

2008-10-30T00:21:00.000-05:00

Well, it caught up with me! I got my shower to get ready to go to the doctor, and I couldn't get dressed! I kept feeling like passing out. I took my bp and it was 96/69, and I didn't take my bp meds. I knew with dropping my hydro my bp would drop too. At least I didn't take the meds on top of it! Anyway, I had to end up taking 5 mg. just so I could get to the doctor. That was enough to perk me up and raise my bp! She was kind of upset, not majorly, but she was going to test me again today. She couldn't do it since I'd taken the medicine. Oh well. I told her I had to, just so I could get dressed and get there! She wasn't mean about it. She is really nice!

All of my labs from the previous week looked good. She tested my thyroid again. She just wants to keep an eye on it to see if it goes whacky since it can after surgery. Right now, everything looks good. Since I had to go back on my hydro, she said, "Ok, you go back on it, and take it for a while, but try to wean off soon if you can. Then get back in here for another stim test." Then she said, "I don't usually let patients do that, so you should feel privileged." LOL! She was laughing. I really like her. She said she knew I was listening to my body and I'd been doing a good job weaning and I've made so much progress already, that she is happy with that.

My stim test was an ACTH stim test, not the CRH. I asked her how she knew my pituitary was giving the signal to my adrenals when we didn't do the CRH. I don't think she quite followed me, but she mentioned the fact that my ACTH before the stim test was 14. That is in range, and it does show that my pituitary is working again. She said that by taking the hydro, it is suppressing my adrenals. I see her point, but I also know that if it is not going to work, you can't force it either. She seems to think you can kind of force it to wake up and work. I really do like her. All I have to say is, she has never lived in an adrenally insufficient body. I don't care what any text book says, my body feels things that the text book doesn't tell you about. I'm all for getting off of the hydro. I don't like it, but I also don't want to end up in the ER with a crisis. Slow and steady wins the race!

So, I'm back on 5 mg. I felt good on that. I'll stay there for a week or so, then go down to 2.5 for a while before I go totally off of it again. Today is 10 weeks post op! Yay! I'm a Cushing's survivor!

I'm off of all Hydro!

2008-10-29T00:33:00.000-05:00

Monday was my last day of taking hydro. So far, so good. I'm just sore and tired. I always get tired when I do a wean. I don't usually get sore. It's funny how each wean has been different. I usually get one or two symptoms of a low, but not all of them all at once, and they don't last long. With the next wean, I get different symptoms. It's weird how they rotate.

I'm going in to see my local endo later today. I hope it's a good report, that all of my other hormones are in line, and not out of whack. I'm looking forward to just getting stronger, and living a Cushing's free life. I'll post what I find out at the Dr. later today.

Woo hoo! Dr. says go off of all steroids!

2008-10-22T03:43:00.000-05:00

I'm excited to hear this news from the local doctor. Although, they seem to think I can just magically quit taking them and be OK. I know better. You have to wean, not quit cold turkey. The good news is, I can wean faster than I have been. I did a stim test and stimmed to almost 20 so they say to get off of the steroids now. That means I'll lose weight faster now, and hopefully get my blood pressure back to normal, discontinue meds for that and other things along the way. I feel like I'm getting my life back, slowly but surely.

My worst day post op is much better than my best day with Cushing's! This feeling is so exciting! I still don't feel 100%. I still wear out easily and require a lot of sleep, but that is becoming less and less too. All good signs!

So, for recording purposes, my baseline cortisol was 7.49. After stimulation it was 19.35. I have currently been at 12.5 mg. I'm going to take 10 mg. each day for the next 3 days, and if I feel good enough, go down to 5 mg. for 3 days, then totally off. If I feel too sick, I won't do it that fast, and I'll just tell my endo I have to take it slower. Hopefully next time I post, I will be steroid free, and on my way to total recovery! Yay! They said I have to do the stim test again in 4 weeks. I guess to see how well I'm still doing without the steroids. I'm not sure.

Weaned again today

2008-10-17T17:30:00.000-05:00

I decided to go down to 12.5 mg. of hydro today. So far, so good. It takes about 3 days to hit me though. I was starting to have some signs of a high again. I'm doing my stim test on Monday anyway, and the Endo may want me to go off of all of my hydro when I see her on the 29th. I'm not quitting cold turkey! I know better than that. Even if the stim test says I can go off of all hydro, I'm still going to wean down to get off of it, I'll just wean faster instead of dragging it out.

8 weeks post op...Doctors, doctors, and more doctors!

2008-10-16T05:57:00.001-05:00

I have been busy running to doctors appointments all week. I have more next week, and then one a week for the next 3 weeks after that!

On Monday, I went to the Dermatologist for a follow up on the moles she removed. The one was neoplastic hyperplasia. Not quite skin cancer, but people who have those are more likely to get skin cancer. Now I have to go in every year for a check up on all of my moles. Yay! Not! I do want to keep a check on it though. My mom had skin cancer, and I know I'm at high risk for it anyway.

Tuesday was my relax day. I went for a body wrap in the evening. That feels so good!

Yesterday, I went to the ENT. It took me a long time to get in, but it was worth it. He suctioned stuff out of the back of my nose, where I cannot reach, nor blow it out. My nasal washes were not making it budge either. Basically, I still had a small scab at the surgery site, but it was green, with other green goo. He put me on 3 weeks of antibiotics. The first 2 rounds of 10 days each didn't kick my sinus infection. Hopefully this will! He also said I have some scarring and my septum is kind of glued to the outside wall of my nose. He is going to get rid of that for me too. He can do it in office. That will be in about 3 weeks when I go back for a check up. He said that just happens sometimes when they do any kind of surgery up there around your sinuses.

I'd taken the girls with me to Columbus. They had to get some teeth pulled yesterday. We had time to kill, so I thought I'd go to my Endocrinologist's office, and get some blood work done. I'm going to see her on the 29th, so I wanted to have blood work done, to go over with her. They use to do walkin lab appointments. I found out yesterday that they quit that, but they did have an opening, so I only waited about 20 min. As it turned out, I didn't have any blood drawn. The nurse went to talk to my Dr., and she wants me to have the adrenal stim test done on Monday morning. So, I'm waiting to get blood work done until then. That means another long day in Columbus. ~sigh~! I have to be in her office at 8 am for that stim test. It takes an hour or so. It will tell if my adrenals are working good, and putting out enough cortisol for me to go off of my cortef. Then I have a follow up MRI at 1 pm in another location in Columbus. I'm excited about the stim test though! It would be great to be able to get all the way off of the hydro! Once I can do that, I'll really start losing the weight. Anyway, after a busy day of running ALL day, I went to the pharmacy, then came home and got ready to go to calling hours for my mom's cousin. It is such a sad situation.

After all of that running, I konked out good last night. I still take half of a sleeping pill, just to make sure I sleep. The previous night, I had been restless, tossing and turning. I haven't done that for a while. I think it's time for another wean anyway. I've noticed that lately, I sleep better at night. For a while after surgery, I still felt messed up on my sleep. I'd be sleepy all day, but not at night. I'm still sleeping a lot in the day too, but I'm sleeping better at night. I feel like my body is slowly changing around, and that is exciting!

Today is another busy day. I have to go to the dentist for my cleaning, and I have to take Zane to speech therapy later. Tomorrow, I get to crash! Actually, this whole weekend is free. Andy said he has noticed that I'm doing better. I have days I can do more, but I still get so tired and I just have to rest. Last weekend we had our church picnic. It seems like I did something on Friday too, but I can't remember. Anyway, I didn't do anything at the picnic, but it wore me out. I got up and went to Sunday school and morning church service, and I was whipped! I came home and went to sleep! I didn't even eat anything. I slept all afternoon, and all evening. Andy called me after church was over at night, and I was still sleeping. The phone is the only reason I woke up. I stayed up for a few hours, and went back to bed and slept until almost noon on Monday, but I had to get up to go to the doctor. So, I'm able to do more, but I still get wiped out easy.

I "feel" really good. I don't have the heart palpitations, feeling like passing out, etc., etc., any more. When my hydro gets too high, because my body is kicking in, and I'm taking the meds, then I get the Cushing's symptoms back, and I know it's time to wean. I get hot flashes, indigestion, zits, high blood pressure and high sugar. Those are all signs for me to wean. The other thing that has had me not feel 100% has been dealing with this sinus infection. When I would get to the end of my antibiotic, I'd feel pretty good. It only took a few days for it to start acting up again, and me to start feeling zapped again. I think that once I wean off of all of the hydro, and get rid of this sinus infection for good, I'll feel like a million bucks! Here's hoping anyway! Maybe I'll add some pictures soon. I haven't seen many changes for a while. I'm kind of at a standstill until I wean again.

6 weeks post op

2008-10-03T21:40:00.001-05:00

I'm doing fine at 15 mg. in the AM. I feel good on it. I got past the pukey feeling days, and now feel pretty good! I just finished the antibiotic, and I still have some sinus infection. I have an appt. with the ENT, but that won't be until the 15th. They couldn't get me in sooner. Turns out my doc retired, and I get a new one there. He's not new, just new to me.

I'm still seeing changes in the right direction. I can't remember if I posted it last time, but I've lost 5 lbs. now, and around 20 inches. My watch was snug when I bought it right before surgery. It is my medical alert watch. I could barely get it clasped. Now it slops everywhere. I have a picture to show how loose it is now. I also have a picture of my nice nails! They haven't been this long for ages!

I'm also posting some pics of the morning of surgery, and now, in the same dress. You can see that my sleeves were stretched to the hilt before, and now they are loose. You can also see that my stomach is much smaller than it was. It's still a long road to go, but I am seeing improvements! Yay! Even though it will take a long time to get back to normal, it still seems amazing that things can change so fast after surgery! I'm loving every minute of it!

Gracie

~sigh~ I wish I had a brain!

2008-09-30T11:08:00.000-05:00

I was going to go to the lab this morning, for blood work again. Mostly to see where my cortisol is. I totally forgot, and took my medicine this morning. Then, later I was thinking, "What all was I going to do today?" I thought of the lab and had a total DUH! moment. Maybe tomorrow, if I can remember! LOL!

I decided to go back up just a tad on my hydro. I went up to 17.5 mg. in the AM, yesterday. Today I did 15 mg. again. Tomorrow I'll do 17.5, then 15. Then, I hope to stay at 15. I didn't feel super bad on the 15, but worse than I had with any other wean, so I decided to go up a bit, and go back and forth for a while, to ease my body into it. We'll see how it goes. I lost a couple pounds and my blood pressure is doing much better on the lower dose!

Aside from all of the medical mumbo jumbo, I want to post cute things the kids do or say. This morning, Zane woke up and came to me. He is 4 and still has a hard time talking. He has to go to speech therapy. Anyway, he said, "I had a dream!" I asked, "You did?" He said, "Yeah, it was about Daddy and (something about a car)... and I had a hod attat!" (Heart attack) He says the cutest things!

Up the hydro and DI woes

2008-09-28T20:40:00.000-05:00

Today was the third day since I weaned. I've done ok. I felt pukey today, but not real bad. I was colder too. I decided to take 2.5 mg. tonight, to see if it helps me sleep better. I'd like to be able to sleep without having to take sleeping pills. I still feel high at night. I can't sleep without sleeping pills, and I don't feel pukey, I'm hot, etc. It sure feels like my cortisol is high at night. I figured I'd try some hydro tonight and see if it helps or makes it worse.

Last night, I started the pills of DDAVP. I still had some spray left, but I wanted to go to pills because sometimes, the spray seems to work too long, and I don't pee enough. Then, I swell, and have to take a day off of the DDAVP to lose some of that fluid again. Well, I took a pill, and it didn't do diddley squat for me last night! I was up all night peeing and drinking. Part of the problem was that it said to take the pill form 12 hrs. after my last nasal spray, only that would have put me off track for dosing. I use the spray at night so I'm not peeing all night. Well, 12 hrs. after that would be 8 am. You are supppose to take the DDAVP at night so you can at least get some sleep! I figured I must need a build up of it in my system for the pills to work. So, I used the spray this morning, about 12 hrs. after taking the pill form. That means tonight, I'm 12 hrs. after using the spray, so I'll try the pill again. I hope it works!

I weaned again

2008-09-27T12:48:00.000-05:00

Yesterday morning, I decided I would just do it. I weaned to 15 mg. in the AM. I figure I can always go back up if I need to. Today is my second day at this dose. I'm still not cold, or chilling, but not having an all out hot flash either. I was sweating a little earlier, doing nothing. I feel a bit pukey off and on. It's literally every few minutes that it comes and goes. It reminds me of a flickering switch.

My red marks that were in my stretch mark look better today. I still have this HUGE zit just under my jaw. I've had no other signs of withdrawl, other than the slight nausea. No diarrhea, no headache, etc. Well, I'll take that back. My muscles do feel like they've had a bit of a work out, like I've been exercising (I haven't), but it's not bad either.

I don't know what to think...

2008-09-25T23:11:00.000-05:00

I'm only 5 weeks out of surgery, so I'd say it's too soon to come to any kind of conclusions about anything at this point, but I do have some concerns.

I had my morning cortisol checked at 3 weeks post op, and it was 5.9. That's not so bad, but it's also a bit concerning when it was down to 0.7 just 3 weeks before. In one way, it's good that my adrenals and pit are functioning again. Here is what concerns me. I've weaned down to 20 mg. in the AM, and my plan was to wean 2.5 every two weeks from here on out, if I could. Well, before I even get 2 weeks away from a wean, I start getting "high" symptoms again, and feel my cortisol is just way too high. I don't know what to think of it. I don't know if it is because I was in a low just before surgery, (I know I was) and my body was use to that, or if it's because my cortisol is rapidly coming back up.

When I did my first 2 weans, they were 5 mg. at a time, in the PM. I did feel them, but not anything very bad. My withdrawl symptoms were very light. Then, I don't make it two weeks before I'm having hot flashes again, zits, indigestion, bruising, red marks, trouble thinking... need I say more? Oh and sleep? Well, I'm still messed up on that. I DON'T sleep at night unless I take a sleeping pill, period! I DO sleep in the day some days, and most days I sleep really late, and hate getting up. I can sleep without a sleeping pill for hours and hours in the daytime. It feels like the old pattern. I feel like my diurnal rythme is still flip flopped. Another concerning thing is with 2 sinus infections and a really bad cold, I never needed to stress dose, and never felt a difference! Infections are suppose to lower your cortisol, and I had no ill effects from it. In fact, when they started getting better is when I start feeling worse.

As for how I feel... well, I felt great right after surgery, when my cortisol was so low. My thinking was much better, I felt alive and like I wanted to do things. Now I have that blah, I don't care feeling again. When I wean, I feel better as far as Cushing's symptoms go, and just feel some AI'ish type stuff.

I partly wonder if my cortisol is going to a normal state so soon because I had a mega small tumor, and I had minimally invasive surgery. Then, I also wonder if it's because I was so low prior to surgery, that these replacements are just too much. I guess it could be a good thing to be able to wean off of the steroids quick, but then again, it makes you wonder if it really is a cure.

Eh! I guess it's one of those things where time will tell. I'd rather not think about it! I'll just call it a cure and go with that! Ha!

5 weeks post op

2008-09-25T08:53:00.000-05:00

I'm now 5 weeks out of surgery. I am still dealing with this second sinus infection. If I could get over that, and stay over it, I think I would feel half way decent again. At least the cold is gone. I got a flu shot on Tuesday also. I hope I'm set for winter!

My weaning has not been very hard on me. I can feel it when I do wean though. It just seems that I'm ready for a wean even sooner than I planned. My plan is to wean 2.5 mg. every 2 weeks if possible. I'm getting new zits, and other markings. I'm getting some more hot flashes, a bit of indigestion, etc. Those are signs for me to wean.

On to other things! The kids are so funny! They have me laughing all the time. My youngest is 4 and he is starting to say all kinds of "grown up" things. One day, my 8 yr. old was suppose to be throwing some tea bags away for me. Instead, she decided to swing them around for a bit first. The bags broke open and the tea grounds were all over the floor. She was just starting to clean it up when my 4 yr. old walked in. He took a look at the situation and said, "That's quite a mess you got there Ryanna!" I don't think there is a day that goes by without something funny happening in our house.

4 weeks post op

2008-09-19T13:51:00.000-05:00

I'm 4 weeks out of surgery now. I had a nose bleed Tuesday night that scared me pretty bad. It finally stopped. My blood pressure was high, and I think that was the cause. I weaned down on my evening dose of hydro. I got rid of it all together, so now I am only on 20 mg. in the morning. Here are some pictures of my progress so far.

I'm seeing positive changes in only 4 weeks. I can't wait to see what it's like by the end of this year!

Obviously, I've lost inches.
I don't have reflux now. I can eat tomato based stuff or chocolate without it burning.
My hair is softer and not so frizzy.
My nails are harder and growing really nice.
My skin is softer.
The body smell is gone (smelling sour even right after a shower). YUCK!
Hot flashes have decreased. I haven't had them in a few days since cutting my dose of hydro.
Less sweating, attributed to the above.
My face lost the redness, but came back some for this picture. (Hydro too high?)
Lost swelling. I had issues with it just the other day, again, I think due to hydro.

That's about it for now.

3 weeks post op

2008-09-12T14:02:00.000-05:00

Well, I was feeling pretty good from the sinus infection, and then I got whopped with a cold! UGH! Now I'm miserable! If it wasn't for the sinus infection and the cold, I'd probably feel half way decent. Even with those, I did not have to take any extra hydro, and I've felt fine that way.

I've noticed the the excess hair on my face has thinned out. It's not totally gone, but a lot of it is, and what is left, is shorter. My face is not red now, like it was. I use to look like I might spontaneously combust! My stomach has flattened out a lot. I can't believe the difference in just 3 weeks! I still have some times that I get hot flashes, but they are less than they were.

I withheld my hydro yesterday, to get my cortisol checked in the morning. I don't have those results back yet, but I was not feeling sick at all. I've had a few zits break out, so I'm wondering if I might be on too much hydro now. I had dropped 5 mg. in the evening, starting last Sunday night. I did that just fine too. I had one day that my stomach was a bit upset, about 3 days after dropping the dose. That was it, nothing more.

Last night, I went to Wal-Mart for a few things. Everyone in the house is sick, and we needed stuff, so I went. I was not in there long, and not doing a major shopping trip. I felt really great at first, but it didn't take long before I started feeling like puking. I was surprised how quickly it all changed. When I left the store, and sat down, I felt fine after that. That was my first "big" excursion. I haven't went anywhere since surgery, other than the doctor and lab. I was reminded pretty quickly, how weak I still am.

2 weeks post op

2008-09-04T23:52:00.000-05:00

Well, it's after midnight, and I didn't plan on staying up this late. I'm usually in bed by 10 or 11 now. Quite a switch! So, now it's Friday. Thursday, yesterday, was my 2 weeks post op date. I'm feeling pretty decent, all things considered. I'm on an antibiotic for my sinus infection, and I used my neti pot tonight, which helped. For those of you who don't know what a neti pot is, they are these little pitcher type containers that look kind of like a genie lamp. You add water and this salt solution, and pour it into one side of your nose, and let it drain out the other. The trick is to breathe through your mouth, and don't stop! Otherwise, it will drain down the back of your throat. They work great!

Anyway, here I am 2 weeks later and several inches less! I took measurements right before surgery. Of course, the more points of measurement, the more it looks like you lose. I measured my neck, above breast, across breast, under breast, waist, hips/stomach together, 1 thigh, 1 calf, 1 upper am, 1 lower arm, and 1 wrist. The total loss for all of those points in 2 weeks is 12 inches, then add in an extra leg, and arm, and I have a total of 15 inches! Not bad! I have not lost weight yet, just inches. How's that for encouragement and a cure? I'm happy with it!

Life is good!

2008-09-02T00:27:00.000-05:00

Today was an awesome day! I felt so good! So full of life again! I had energy! I wanted to "do" things. I wish there was a way to articulate just how bad Cushing's makes you feel! I didn't realize how dead I felt with Cushing's until being on the other side of it again!

Today, I did more than I probably should have. I just couldn't help myself! I took extra hydro to make up for the extra cortisol I had to be eating up though. Also, because I feel I'm starting to get a sinus infection, I'll need a bit more. I'm off to see the doctor about that tomorrow.

Today I did a little organizing of the aftermath of coming home from surgery. I had papers to go through, and things to get put away, etc. I did that and made beds and sorted laundry. I sat in a chair and had the kids hand me the laundry so I didn't have to bend over, and I put it in the bags it needed to go into to get separated for washing. I took the whole day to do all of that, and I took a nap in between, but I got some things done, and it made me feel good.

I have this different disposition! I want to take the kids to the park and watch them play, I want to do different things. Before, those things seemed like chores, and like they were more work than they were worth! It's really hard to describe what that is like when you have Cushing's. So, today, I really appreciated life and feeling good again! I told my husband I am really going to enjoy this new life of mine. He is thrilled that I'm feeling so much better. He said he didn't even care if I didn't lose weight (which I will), but he just wanted to see me feeling better, and able to do things again. I love him so much! He's a gem! Life is good! God is so good to me!

I'm a Cushing's survivor!

2008-08-29T17:51:00.000-05:00

I made it! I'm on the other side of Cushing's! Surgery went great. It took a long time. I was told it was a difficult surgery. My tumor was very tiny, and it was between the anterior and posterior pituitary. I lost quit a bit of blood during surgery, but they got that stopped (obviously), and I'm doing good.

My surgeon is sure I have a cure. I'm pretty sure he is right too. After surgery for Cushing's, they check your cortisol levels, to see if they drop really low. If they do, that is an indication for a cure. They give you replacement cortisol, until your body starts making it again. The second morning after my surgery, my cortisol dropped really low. It was 0.7! What a sweet number to hear! The hydro they gave me immediately after telling me those numbers was even sweeter! I had been crashing ever since the surgery, and I knew it. I felt worse by the hour. I was chilling so bad my teeth were chattering, I had a headache, felt like puking, and I was so sore all over! I told the nurse I felt like someone drug me through a knot hole backwards, stomped on me, and ran over me with a train! When you've just had surgery for Cushing's, that's really good news! It doesn't feel so good, bit it is!

Now I have to go through this process of withdrawl. Not a fun prospect, but I think I'll be fine. I know what adrenal insufficiency (AI) feels like, and hopefully I will be able to stay on top of it. I hate having to go through feeling so weak and sick, but it's all part of the process, and I do look forward to that day, when I feel new and whole again. Even though I feel rough right now, I can tell I already feel better in some way. I can't quite put my finger on it, but it's there! I have not lost any weight, in fact, I've gained about 4 pounds. I have, however, lost inches. I don't know the total, but I know I lost 1.5 inches in my stomach/hip area already! That's an improvement.

At the hospital, they had me take 50 mg. of hydro at 8 am, and 10 mg. at 8 pm. The endo who diagnosed me usually has you take it at 8 am, and 1 or 2 pm. A lot of people can't sleep if they take their hydro later than that. If I take my sleeping pill, I can sleep like a log, and then I'm not feeling so sick in the mornings either. Their reasoning was that the last dose has to hold me through until 8 am. That makes sense to me. They had me on the 50/10 for 2 days, then I dropped to 20/10. That's half! I felt it. I felt OK, and slept most of the day. The next day was the day I came home, so I took 40/10 that day (which was yesterday). I went back to 20/10 today. I'll see how I do on it. I have a feeling that weaning will be a long process for me.

What a day!

2008-08-18T21:56:00.000-05:00

Whew! I'm pooped! I've cleaned and cleaned and cleaned! My house is sparkeling and dust free! It looks awesome! Too bad it never stays that way on it's own! Ha! I love it when my house looks like this, I just don't like how I feel when I do it! This will make it easier for others to keep up on, and take care of while I'm down after surgery. I'm ticking off my list! I'm down to paying bills, doing laundry, grocery shopping, and packing! I'll do the bills in a little bit, and everything else tomorrow. Tonight, my husband said, "I hope you plan on resting up when you are in the hospital!" He says I'm having the "nesting" instinct and I'm about to give birth... to my tumor! LOL!

Making progress...

2008-08-18T00:48:00.000-05:00

My husband and the kids helped me get some things done this weekend. I got my bathrooms cleaned, and the kids' bedrooms and closets cleaned. That was a major project! We moved all of their dressers to the basement where the laundry is! That will make laundry easier, and it also gives them more space, and makes their rooms look better. Now they have no excuse to have clothes on their bedroom floors! I still have a lot to get done, but I should be able to do it all in the next 2 days. I feel like I made a lot of progress! Now, to tackle the mountain of laundry. I call it Mount Washmore! I get it caught up, only to get behind again. With a family our size, it doesn't take long to get backed up!

I've been thinking about surgery. I'm not sure what to expect. I do, but I don't. Since everyone reacts differently, I don't know what MY body will do. I wonder if I'll crash, if I'll be puking, freezing, etc. It will be a good sign if I do, but doesn't sound like too much fun! LOL! I guess I'll be finding out in a few days!

Here we go again!

2008-08-16T12:19:00.000-05:00

Well, it's another day. I have a headache! I mostly get them over my right eyebrow. It is screaming at me, and so is my 4 yr. old. I wantgumIwantgumIwantgum! Ok, forevermore, get the piece of gum! He's asked for gum for days, and I always say no. Today I cave in. I don't want to hear it anymore! Of course, since he gets one, everyone else wants one too. Now they are quiet... for a little bit.

I should be doing loads of laundry, packing for surgery, cleaning house, shopping for groceries, paying bills, and here I sit, blogging! I feel most productive or active at least, late at night. I am awake in the day, but I don't feel alive. Some days I have to take a nap, others, I don't. I'm excited about my surgery coming up, I just lack the energy to get busy to make it happen! I look forward to having energy again someday! It would be nice to feel alive, rather than like I just exist! Some days the feelings you experience with Cushing's are just really hard to put into words. I don't know that they exist.

Ok, I'm off to get busy. The longer I sit here, the less I get done! Surgery will be here before I know it! Do you know anybody who was excited to find out they had a tumor inside their head, or that they had a disease? Only if you know a Cushie! We get excited about these things, because we have to work so hard to find out what is wrong with us, and we have to prove that it's there. Basically, we have to prove we are sick, and once we do, it is sweet validation! It is hard, hard work. Harder than you would think. It gets very frustrating and discouraging! There are days you wonder if you are on the right track, or if it is worth it all. Deep in your heart, you know it is, but you have those moments of despair and doubt that take over and threaten to squeeze the life right out of you! The support of our Cushing's community keeps us on track! I'm so thankful for all of my Cushing's friends! If it wasn't for them, I doubt I would be here, in this position today! I probably would have given up a long time ago, and resigned myself to living as long as I could, sick!

2008-08-16T04:31:00.000-05:00

Why did I pick this title? Well, that's what I feel like most days! I wake up wondering if anyone seen the license of what hit me!

I use to feel like my life so was so on track. I'm a bit of a perfectionist. I always use to be a meticulous house keeper. Everything had a place, and everything needed to be in it's designated space! That kept momma (me) happy.

The sicker I got, the more my house went by the way side. Things that use to be really important to me, didn't seem to matter at all any more! I can only stand so much. I have to clean it somewhat eventually, but I'm not cleaning it every week like I always use too. I have very little energy left these days, so I save it for the important things in life. When I can't do the things I want to do, or feel that I need to be doing, I feel like my life is off track. That gets very discouraging some days. I just keep chugging along, hoping to get back on track one day real soon.

Who knows exactly when my journey with Cushing's actually began? It was a long time ago! I'm sure back into my teen years, and possibly into my young childhood as well. After marriage and the birth of my first baby, the weight started packing on. That was the big physical sigh. I also had fuzzy hair on my jaws/face, I had brown spots on my face that I'd never had before. I was tired a lot. At times I felt like I couldn't get enough sleep, and others, I just couldn't sleep. I'd feel anxious and paranoid. I had no clue what was wrong with me, and the doctors didn't either. I really didn't have the energy to deal with it, so I dropped it.

I had opposite type cycles for years, had no clue what they meant. Doctors all said that everything was fine. Well, if everything is fine, then there is no sense in pushing the issue right? So, I was meek. I was resigned to, "This is the life of Grace. This is what is normal for Grace. Get use to it." The problem is, as the years went on, the problems got worse. I developed more and more symptoms. I reached a place I could not ignore what my body was screaming at me. I HAD to find out what was wrong, and this time, I was not stopping until I knew the answers. This is where my real journey with Cushing's began.

Where do I start? I had done some research for the kids... looking at pictures of child hood diseases to see if they had chicken pox. There was a picture of Cushing's on that page. I'd never heard of it, so I clicked on it, and seen this lady with a bright red, round face. Hmm.... Well, my face was not that round, but it did get red. I was intrigued! I had to know more. So, I looked up more on Cushing's disease. There I found that a lot of the symptoms seemed to fit, but only to a point. On some things I was opposite as well. That really confused me. I didn't know how it could be both when they were opposite. I read a chat interview they had done with Dr. F.. In that chat, he was talking about cyclical Cushing's, and how you would have opposite symptoms. Ding, ding, ding! Winner, winner, chicken dinner! I knew I had just won the prize! Not it was making total sense to me. I was so excited, I about couldn't tear myself away from the computer! There was so much to learn! I was sucking it up like a sponge! I felt hyper and giddy to finally feel like I'd found out what was wrong for me! It had a name, it was curable, and I was just thrilled out of my gourd!

I met lots of wonderful people on the Cushing's help and support website. What a group of people! Long story short, I cut the petty stuff and flew out west and seen Dr. F. so we could get the show on the road! I came back in July of 2007, and I was diagnosed with Cyclical Cushing's disease in May/June of 2008. I had one surgery scheduled that I had to cancel for financial reasons. I rescheduled with Dr. J. in Pittsburgh, PA. Surgery is coming up next week. I didn't blog during my testing phase. I decided I would blog (0r try to) during the recovery from surgery. They will be taking my pituitary tumor out of my head through my nostril. I'm sure that will be the biggest booger that has ever come out of my nose in my life!

I hope you enjoy reading about my journey with Cushing's disease and recovery. I have 5 children who keep me entertained and do something or say something funny, almost daily! They are such a blessing!

I'm at the end of my testing process right now, at least for this round. If I don't get a cure, I'll be testing again. No matter what, I will keep on this until I beat Cushing's disease. I would like to encourage any of you who are starting on this journey to better health, if you feel that you have Cushing's, more than likely, you do. It may take a long time of testing, it takes a lot, did you hear me? A LOT of patience and perseverance on your part to get to the finish line. If a doctor ignores you, then you know it's time to fire him and find a new one. Educate yourself so that you are educated in this, you are able to go into the doctors office and have an intelligent conversation about all of these test scores and what they mean. If your doctor is offended by that, then you need to move on. Here is how to tell if you have a great doctor.

#1. Your health is his number 1 goal.
#2. Your PCP listens to you.
#3. Your PCP takes time with you. He doesn't rush in and out and throw prescriptions in your lap!
#4. Your PCP acts like you have a brain, and you just might know how to use it!
#5. Your PCP is not threatened that you read things on the internet, or in magazines! In fact, he welcomes it.
#6. Your PCP is asked a question and he says, "I don't know... but I will find out". This means several things. He is not a know it all, he is not afraid of his inabilities, he is interested to find out, he is honest!
#7. Your PCP made a mistake, and guess what? He admits it! Now there is a rare find! There's nothing wrong with making a mistake, and it takes a real man to own up to it and make it right! Consider that!
#8. The office staff is friendly. If they are in a good mood, then they get along with him too. The office probably runs fairly smoothly.
#9. When your doctor sits there pondering over your situation, wondering what to do, he may not have the answers, but he cares!
#10. When your PCP tells you he hopes you have this disease, not because he wants you to have a disease, but because it offers an explanation of what is wrong, and how to fix it. He does not care that he is not the one figuring this thing out. Ultimately, he wants you to be well again. He is willing to say, "It's beyond my expertise level, and you need more help than I can give you, and good luck and keep me informed!

Next week I will be starting my life on a new road. I'm not sure where this journey will take me. I'm hoping it's a path free of Cushing's. In all reality, I know it might not be. I might need more surgery before I am totally free of Cushing's. I am determined to get rid of it, one way or another. It just might take me a bit longer than others, or, maybe not. Time will tell.

My goal is to try to blog through my recovery process to share with others what it is like, while it is fresh in my mind.

Hugs to all,

Gracie