Tuesday, December 27, 2011

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.

Tuesday, November 1, 2011

Changed the title of this blog!

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

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.

Monday, October 10, 2011

New Hydrocortisone by Core Pharma is old Hydro by Glades

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!

Thursday, September 1, 2011

Skin Cancer

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.

Sunday, August 21, 2011

Low Dose Naltrexone (LDN)

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.

Thursday, July 28, 2011

Guess I should update

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!

Wednesday, April 6, 2011

Qualitest is not my friend!

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
shaking internally
red stretch marks
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.

Sunday, February 27, 2011


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.