Tuesday, December 4, 2012

9 weeks post op tomorrow!

Wow! I can't believe it's been that long already! I'm doing really good. I took off the binder at 6 weeks and did well, but with Thanksgiving and a weekend get away I had, I started swelling pretty bad again. I've had to lay low this week, and it's helping the swelling to go down. I guess I've overdone it, but it's hard not to when you feel good. I notice that I still tire fairly easily. I tried wearing my binder again, but it was no help. It's way too big on me now. At this point, I'm not sure I want to waste money on a new one. I took Arnica Montana pills after surgery and they helped a lot with swelling. I ordered some more, so when they get here, I'll be taking those.

Maybe next week, on my birthday, I'll post updated pics.

Tuesday, October 30, 2012

Week 4 update

I forgot to do an update at 3 weeks. Tomorrow is 4 weeks post op. I feel like I really turned a corner between weeks 3 & 4. I'm feeling so much better. I'm not swelling as much. The stuff they put over my stitches is coming off more and more. I still have some of it there, but the places without it look really, REALLY good. I went shopping for some new clothes. Everything else is way too big for me. ;) Fun stuff! I have 2 more weeks that I have to wear a binder, but I will probably wear it even longer. It helps so much with swelling. I do swell more as the day goes on, but look pretty good when I first get up. I'm really happy with it!

Tuesday, October 16, 2012

Almost 2 weeks post op Tummy Tuck

I think this past week was my worst and my best. Technically, this coming Wednesday will be my 2 week mark. Since my last update, I had some pretty painful times. I tried to cut back on my pain medicine some. One reason was I wanted to spend time with my family. Another reason is, I didn't want to run out of my pain meds and still be in horrible pain, so I cut back to see how it was. I found out that it wasn't so great! I went back up on frequency. I was still trying to sleep in the living room, which was not comfortable. Add in the kids being noisy and waking me up while trying to sleep, I was getting fed up with everything!

I decided to go downstairs to my bedroom. OH, MY WONDERFUL BED! Oh, how I had missed my bed. I have a latex foam mattress and it's wonderful! I wasn't sure if I could lay in it, on my side. I did, and it wasn't too bad. It's still hard to sleep on my right side where I have 2 tubes coming out. It's more sore on that side. So, I started getting more restful sleep. I stayed up on my pain meds, which are really almost gone, and slept so many hours of good sleep.

I really started getting stir crazy and restless during this past week. I like to be up and doing something. The doc's instructions said to walk at least 5 times a day. Just getting up to go to the bathroom, and sitting up for a while after my shower, made my stomach swell until it was so uncomfortable (yes, I do keep my binders on, but still!) I was just at the end of my rope at one point and tears welling up in my eyes. That's when I decided I just had to keep taking that pain medicine around the clock. Anyway, I find it very confusing and aggravating that you need to walk, but the more you are "up", the more you swell.

So, the closer I've gotten to this second week, it's gotten a bit better each day. I'm not swelling AS bad, and not hurting AS bad. The swelling is still uncomfortable, but not like it was. Bruising is still minimal. All in all, I think things are improving (as they should be). I can tell this is going to be slower than what I'm use to. I still don't have any of the skin pulling apart like happens sometimes. My drains are still in, but getting close to coming out. I'm down to 35 mL of drainage in a 24 hr. period. I have to get down to 25 mL to get my drains out. None of my stitches have started coming out yet. Not sure when they are suppose to, but they are self dissolving. That's about it for now. I'll try to do a video to update here in the next couple of days.

Wednesday, October 10, 2012

I'm 1 week post tummy tuck

I'm on the other side of the surgery now. It's sometimes hard to get comfortable. I'm still sore, but doing really good. I've never felt like it was "pain". It just feels sore and bruised to me. I have had the brief sharp pains where the nerves try to regenerate. I have medicine for that, too, so it hasn't been bad. I had a lot of medicines for this surgery. Now, I said I wasn't in pain, but I bet if I didn't use my pain meds, I'd be in a LOT of pain!

I've got an anchor in my torso now. The cut is from just under my breast bone, down to my pubic bone, and past my hips on each side. My surgeon did a great job! I've seen people who have a wad of skin at the end of the incisions on their hips where the surgeon bunched it up when sewing them back together. I don't have that. My stomach is still really swollen. It has went down quite a bit, but has a lot more to go. I'm anxious to see what my belly button looks like. Right now, it doesn't look like a belly button at all. It's too swollen. I feel like I have a lot of bruising that I'm not seeing on the skin yet.

I'm walking around well. I can sit straight up in a chair, or couch, but I cannot stand straight up yet. Sleeping is still hard. I sleep a lot with my pain pills. They knock me out and I take them every 4 hrs., except when I skip them so I can actually be awake enough to talk to the family. Usually I sleep 2 or 3 hrs., and the last hr. before the next pain pill, I spend going to the bathroom, readjusting my sitting/laying place, draining my drain bulbs and stuff like that. I was sitting up in a chair, making 2 birthday cards for my daughter. That made me swell really bad! So then I was laying flat on my back with legs elevated, to get the fluids moving out again. This meant I was up and down every hour on the hour, all night long, going to the bathroom!

I have lost a little bit of the water weight. The Dr. took off 15 lbs. of skin/fat. I can't believe it was only that much. It looked like it would weigh at least 30-40 lbs. So, since I still have swelling, my measurements are just temporary. At this point, while measuring my lower stomach/hips, (keep in mind I've got 2 binders on as well, and padding from gauze) I've lost 6 inches. The waist and upper stomach under breasts are still swollen bigger than they were when I went into surgery. I'm so anxious to see the actual results. This gives me a pretty good idea, but the swelling makes it hard to imagine the final shape. To be continued....

Friday, September 28, 2012

Plan for TT

As usual, I forget to update my blog. My surgeon decided to cut me from just under the breast bone down, and across from hip to hip or somewhere in that area. I have so much skin side to side he will do the vertical cut to pull all of that in. Then he will also do the horizontal cut to pull all of it down.

On another note, I got my 3rd CPAP mask. It's the Sleepweaver Elan. It's cloth, but a different shape than the original Sleepweaver. The original one was too big for my face and blew air straight into my eyes. This one works much better. I liked the other masks, but whatever is in that plastic/rubber seal makes my face break out into a solid rash and it burns.

I will post pictures of the before and after on the tummy tuck, after the surgery. Maybe in about a week or so.

Monday, September 17, 2012

Tummy tuck plan

Some tummy tucks only require skin removal horizontally and then stretched down and sewed together. Sometimes, there is so much skin, it also needs sewed up the center to pull in the sides. I have the last problem, so I will have a vertical scar as well. Guess I will have an anchor on my stomach. LOL! I'm getting excited!

Countdown to Tummy Tuck!

Counting down until surgery to get rid of this baggy stomach! Can't wait! I go see the surgeon again today, for final decisions. I need to find out if he will cut me up the middle and pull the sides in (tightening my back as well) or if I need to get a belt lipectomy (more expense and more pain.

I'm not excited about being in pain, but that part is only temporary! More updates after talking to the surgeon!

Tuesday, August 21, 2012

Lots of updates

I am SO bad about updating this blog! I see my last post was in April. I've had a busy, productive summer. But there was a hiccup along the way.

I'd been having pains off and on, for over a year, on my right side. Doctors pretty much blew me off. They did feel my stomach, but nothing seemed to be wrong. I even had a CT scan that said nothing was wrong. Then, toward the end of May, it all fell together, or apart. Hehehe. I woke up on a Wed. feeling quite nauseous. I took anti nausea meds, and they were not even touching it. I had severe pains in my stomach. Around 1 pm, I started the upchucking. That's really bad news when you have Addison's Disease! I immediately used a shot, which kept me in check, but didn't stop the puking. I sent my husband a message letting him know I was really sick and had used my shot. The pain got worse. It was like labor pain, but worse because you get breaks between contractions during labor!

I called my husband home, or maybe the kids did, I don't remember. We decided to go to the ER. I was afraid that maybe it wasn't the flu, and something more serious. (I was right.) I got to the ER and told them I have Addison's, I'd been puking all day, and gave them my emergency letter from my doctor, and they told me to have a seat. I told my husband to see how soon they would get me back. I needed another dose of Solu-Cortef. He checked and they said 14 people ahead of me! I went to the bathroom and gave myself another shot, and waited.

They got me back there, did a CT without contrast, said it was ok. They figured it must be the flu. They gave me a pain shot, some meds, and sent me home.

I rested decent since I'd had the pain shot, but it was wearing off. Now we are on Thursday. I was no longer having the nausea, or the severe pain all over my stomach, but the pain had settled on my right lower side, just in from my leg/hip. I tried to rest. I started running a fever and woke up shaking all over. The kids helped me get a shot in me, then I think I passed out. They called their dad home, and he checked my temp. It was 105! I was out of it. The next thing I remember was them yelling my name and yanking me off of the couch to get in the van. I could not walk at all. I couldn't move anything. I was in shock. They had to basically carry me to the van. I'm sure you are wondering why we didn't call 911. Well, the local hospital tried to kill me, literally during a different crisis. Not going there EVER again!

So, we headed off for the hour long ride to the hospital. The staff had to come out and get me out of the car and onto a stretcher. They took me straight back this time! :) My fever was not as high. It came down to like 102 and I was sweating buckets! My blood pressure was only in the 60's/40's. They got fluids going... 2 IV's! Then got meds in me, etc. They got me back for another scan, but this time with contrast. It was my appendix. It had stones in it, was enlarged, and had perforated. It was leaking infection into my blood stream, sending me into septic shock. I've been feeling much better since that ole appendix left the building! ;)

I've recently switched my steroids. I was taking hydrocortisone, but changed to prednisone. It's strange because prednisone is suppose to be longer acting and about 4 times stronger than hydrocortisone, yet I'm losing weight and looking much thinner in the face and neck. It agrees with my body better, I guess.

My other big news is, I'm getting a tummy tuck. All I'm waiting on is my endo to send a letter to the plastic surgeon. That might take a while, but hopefully not long. The plastic surgeon won't give me a surgery date until he has this clearance from the endo, and they discuss my steroid dosing. Understandable.

We have been working like crazy this summer. We got a lot of fill dirt and made places for our new pool (it's huge) and a pole barn. We built a retaining wall, and have one more to build. I got half of my flower beds done before I had to have my appendix out. The weeds took over the one bed again. I didn't get the mulch in it. I was ready to when I had to go to the hospital. Then it was catch up on everything after getting out and recovering.

I guess that's all of my news for now. I will try to add a picture to show the difference of me on hydrocortisone and me on prednisone. In just 3 weeks time, it has been a pretty big change.

Sunday, April 22, 2012

And then there was Saturday...Paying the price!

So after spraying the front of the house and power washing it, I could hardly move on Saturday! Going up and down the ladder kills me! I was so tired, I slept all night Friday night, got up at about 11 am, then fell back to sleep before 3 pm and slept until 7:30 pm. Now I'm wide awake.

My husband has often told me to pace myself, but I've told him, you really can't. You can either do something, or not do it. If you have a good day, you know you need to get as much done as you can, while you can. You also know that you WILL pay for it, but at least you get something done. Is it worth it? Yep, it sure is!

Thursday, April 19, 2012

Rejoicing in the little things

Today was a pretty good day for me. Lately, it seems every day has been a "bad" day. I have not felt well enough to do much of anything. I feel drained of energy and just yucky in general.

Today, I went to the store and got some groceries. I also got some stuff for landscaping. I started scrubbing down the siding on the house, too. I have a lot more to do, but it's looking really good! I also started weeding the one flower bed.

You say, "So what? No big deal?" If you had Cushing's or Addison's disease, you'd know what a big deal it really is! We live for those "GOOD" days, when we can finally get something done.

Friday, April 13, 2012

Today was one of "those" days...

I've not been doing good on keeping up this blog every day, like I had planned. Sadly, this disease has made me an unreliable person. I hate that! I just never know how I'm going to feel from day to day. My husband was really sick lately. Now I'm not feeling good. I slept most of the day. I was dizzy if I got up and tried to move around. Being dizzy is really hard to deal with. I think it has to do with autonomic dysfunction more than anything, but it's part of my package. I never know when it's going to hit, or how long it will stay. Having health problems makes it hard to plan ahead for things. I hate to make commitments to do something because I don't know if I will be feeling well enough when the date rolls around.

Sunday, April 8, 2012

Let's talk about the mental aspect of Cushing's

Cushing's has a huge impact on our physical body. As I've said before, it spares nothing. It affects our minds. Besides the memory and speech issues, it invades our thoughts. It causes us to doubt ourselves, sometimes doubt our doctor's diagnosis once we get diagnosed, etc. It makes us depressed. I would not say it is the typical type of depression. It is a depression from being sick all the time, and not getting help from the medical field. We seek doctors to figure out what is wrong with us, and we often feel like they are not even listening, let alone running the right tests. We feel so sick, and we are unheard. We often feel like NOBODY cares. That includes close family and friends. We know that nobody understands what we are going through but another Cushing's patient. Unless you have had the disease, you can't fully grasp the magnitude of it. You could read all the books and articles on Cushing's, and still not know first hand what it feels like. Having head knowledge of the disease is just not the same as having a physical experience with it!

Sometimes we feel like we are just going to lose our minds. We wonder what is happening to us! It's scary! It helps so much to talk to another person who has Cushing's. It eases your fears, and it just helps to know others understand what you are talking about and feeling.

Some of us have a lot of pain. Let me tell you, a person can only take so much! Imagine being in pain 24/7 for weeks or months on end. When it's like that, it consumes you. There is no escaping it! People who are not in chronic pain do not understand that!

I have always thought suicide is sad. As a Christian, I believe suicide is wrong, but I am not judging anyone. I've been in THAT much pain before. I can understand why someone would commit suicide when they are in constant pain. I've heard people say before that they think it's selfish when someone commits suicide. They think it is selfish because of the hurt it causes the people left behind. There are lots of reasons someone would commit suicide, and I'm not talking about every single case. I'm talking about what I know about, and that is someone dealing with chronic diseases and chronic pain. It's not about being selfish. It's about getting relief. It's about being at the end of your rope and not being able to hold on any longer. This is why I think it's sad! If doctors would help these people more, and get them pain relief, or get their disease diagnosed and get them to treatment, you wouldn't see most of them feeling suicidal! Most people have a will to live. Most people do not want to die. There is a threshold you cross. I can't tell you exactly what it is, but I've been there. I've never wanted to kill myself, but I didn't care if I died. I sometimes wished I would just die in my sleep, so I wouldn't have to suffer any more. That is a sad place to be in, and nobody should judge someone else unless they have walked a mile in their shoes.

To all my Cushie friends, I hope you have the strength to hold on until you get the help you so desperately need! It does get better!

Saturday, April 7, 2012

Do you know what Panhypopituitarism is?

The pituitary gland is the master hormone gland. Panhypopituitarism is when you have lost function of several of your pituitary hormones. In my case, I've lost all but 1! When you have pituitary surgery, it's common to lose at least 1 hormone. Some of us lose function of all of them. I was already deficient in Growth Hormone before I ever had surgery. The tumor was causing that. After my surgery, I gradually lost more and more of my hormones.

When your hormones are out of whack you don't feel good. In fact, you are just downright miserable! All of this comes in to play when we have Cushing's. Getting a "cure" isn't always all fun and roses. We often pay a pretty heavy price. We gladly trade off because living with Cushing's is even worse. Trying to balance hormones is hard. They fluctuate, and if you have to adjust one, it often throws something else off. They all work off of each other.

As a result, my daily medicines are:

Thyroid medicine
Growth Hormone
(I don't need progesterone because I had a hysterectomy)

And because I had both adrenals removed:

Hydrocortisone split into 3 doses a day

Other every day meds are low dose naltrexone and prenatal vitamins (they have more stuff in them, that's why I take it).

Those are just my every day pills/shots. I also have other things I take on occasion, or as needed. I have medicine for nausea. One that makes me sleepy and one that doesn't. I have allergy medicine, anti anxiety medicine, vitamin D3, and vitamin B-12.

I get sick of taking pills, but I have to in order to stay alive and function on some level!

Thursday, April 5, 2012

Flipped diurnal rhythm

When you have Cushing's Disease, you get a flipped diurnal rhythm. When you are cyclical, this can change around. Sometimes you have insomnia, and want to sleep all day. Other times, you are up at regular hours, and sleep at night. It makes it hard to function and fit in with life and people who are not sick. They often don't understand. They think if you just go to bed earlier, you will get up earlier. Hahaha! No.... it doesn't work that way! We wish! Even sleeping pills don't work well for the most part. You might get a few hours of sleep out of them, and wake up suddenly in the night, feeling startled. I can't tell you how many times I sat straight up in bed, out of a dead sleep, feeling like someone just woke me up by scaring me! At times, you have this drastic fatigue come over you that you just CANNOT fight! It's like a huge black cloud! It feels like when you are put under for surgery. You just can't fight it. It just happens and you have no choice but to go to sleep!

Now, I mentioned "cyclical". What that means is, sometimes we have tumors that turn on and off. We can go through periods of time where the tumor is functioning, and we call that a "high" cycle. When the tumor turns off, we often feel extra sleepy, have diarrhea, nausea, and aches and pains. We often just feel like we have the flu! It's cortisol withdrawal that causes those symptoms. Typically, when you are in a high cycle, you break out in acne, feel extra hungry, feel wired, can't sleep, but feel pretty good for the most part. If you stay in an extended high, it really starts messing with your mind. It's no fun either!

Having a disease like this makes it hard to hold down a job, or go to school. Many people have to quit working, or drop out of college. It's easy to see why, when you know how Cushing's really affects the body.

Wednesday, April 4, 2012

Memory issues and speech!

For a while after my adrenals were removed, I seemed to have the memory issues improve. I still deal with this symptom all the time. That's why I'm always running late on this blog! Hehehe! I always forget! My brain seems to function best late at night.

They have proved that Cushing's causes the brain to shrink, in the part that deals with our memory. My long term memory is good, but short term is a joke! Sometimes I ask my kids the same question over and over. I don't do that all the time. Sometimes it's just worse than others.

When my Cushing's started getting really bad in 2006, this was one of the most alarming symptoms to me. Especially since my dad had just died with Alzheimer's the previous year! My grandmother (his mom) had it too. I started forgetting what I was talking about mid sentence while taking with someone. Talk about embarrassing! More than it being embarrassing, it was downright scary! I thought I must have early onset Alzheimer's!

Another symptom I had with Cushing's was saying words wrong. I actually thought this was funny most of the time. We always made a joke of it. Once in a while it would just make me mad that I couldn't talk right, but mostly, it was just funny! Somehow, the brain will mess up and make you say something you didn't intend to say. Most often, I would instantly combine words and create a new one. Like one time I called a handicapped ramp a "slamp". That was a combination of slope and ramp. I once told one of the kids to "mair" up the socks. That was a combination of match and pair. Those are some examples. At other times, I just had odd "words" that were not really words at all... not a combination of anything, and who knows why it came out that way. I can't even remember what I called our RV one time. I heard the word come out of my mouth and was puzzled. I meant to say either camper or RV (I don't remember now), but it was some odd combination of letters! I was in shock. Those were particularly alarming to me. I can make sense of combining words, but this other deal was just bizarre! I was once reading to one of the kids, and I read the word "newspaper" as "recorner". I had no idea where that came from! I was looking at newspaper, and meant to say newspaper, but "recorner" came out of my mouth!

Besides those problems, we also often have a hard time thinking of the word we want to use, or we have trouble spelling words we've known all our life. They suddenly don't look right when typed out. We often have to sit and think of another word that means the same thing, because we can't think of the one we want to use, or can't remember how to spell it.

Thankfully, I don't have a lot of problems with this now. I will occasionally have something odd pop up. Mostly I still deal with memory issues. That is still frustrating and embarrassing!

It's hard to say what "one" symptom is the hardest, or worst to have with Cushing's. Aside from the physical changes, the brain changes are often one of our hardest things to deal with. Many of us were very smart before Cushing's. We had high positions in jobs, or high IQ's. Cushing's often makes us feel like we are losing our mind, or that we are now "dumb". We aren't dumb, and we are still very smart, but everything is more challenging for us with Cushing's. Cortisol literally affects everything in our body. It spares nothing!

Tuesday, April 3, 2012

Yikes, I'm already falling behind! Let's talk about our body with Cushing's!

I'm pathetic! Well, actually, I have a good excuse. I had a doctors appt. in the big city today. I took the girls with me and we went out to eat, and to the mall after that. We got home late. Now that it's after midnight, I'm into the following day, putting me a day behind. Oh well.

Since my appt. at the doctor today was to see about a tummy tuck, and maybe some other work, let's talk about what Cushing's does to our bodies.

The excess steroids that our bodies produce with Cushing's causes us to gain a lot of extra weight. That is the most obvious outward sign to everyone, except most people want to blame you... that you are just not eating right, or exercising enough! Doctors do it, friends and family do it! Depending on how your tumor acts, or how long you've had the disease, you may or may not have gained a lot of weight. I have most likely had it all my life, as it looks like Cushing's is genetic in my family. I believe my mother had it, and I think 4 of my 5 children do as well. So far, I'm testing 2 of them, and they have some positive results.

Anyway, back to the body. I gained 130-140 lbs. with Cushing's. Now I have LOTS of skin (still some fat too). My muscles are shot as well! After 5 babies and Cushing's, which causes muscle weakness, they are just falling apart. My skin under my biggest belly flap (yeah, that's gross, but it's a part of my life that I've just had to deal with) often breaks down. It will tear and bleed. It also gets rashes. It's quite painful. I'm sick and tired of it! It's no fun at all, and SO NOT sexy!

I feel akward in my clothes. My belly shows through my clothes. There is no hiding it. It makes me look odd! You can tell I have smaller legs, and a smaller waist. My belly skin makes me look like I have wide, odd shaped hips. It's not my hips at all. It's skin from my belly, spilling all over the place. And underwear? That's a joke! Nobody makes underwear to fit a body like this! It's just not sexy to have your belly hanging out the leg holes of your underwear!

Cushing's also causes excess hair growth for women, in places that women just should not have hair growing! I'll admit, I have resorted to shaving my face. I'm not happy about it, but I didn't like the female werewolf look either! I have no idea why this symptom did not disappear for me. Some of it did, but the facial hair did not. Actually, it did for a while, but came back. I gave up and just started shaving it. It looks much better!

With Cushing's, my breasts exploded. I was wearing an H cup! Unreal! Well, I've went down quite a bit, but now I look like I've been run over with a steam roller! Those poor old Ethiopian women have nothing on me! I'd like to have them put back in place and fluffed up a bit (by removing the excess skin and tightening). Also possibly some reduction. You know, I don't consider myself a vain person at all. I never figured I'd EVER have any plastic surgery, but I never counted on my body being stretched like taffy and left laying all over the place, either! :)

When you have Cushing's, you often have a very odd  body odor that no shower and no soap can get rid of. It has to do with the hormones, I'm sure! I don't miss that symptom at all! It's embarrassing!

With Cushing's, we also get stretch marks called striae. They can be pretty much anywhere, and they are unflattering as well. We also get boils, acne, and a lot of other skin conditions. They can be painful, and embarrassing.

We also often lose a lot of our hair, and it just turns into this frizzy, haystack consistency that you can't do anything with. Oh, and don't forget the big red face!

I'm sure that there are other symptoms that I have not listed, and I've painted a very unflattering picture. WELCOME TO CUSHING'S DISEASE! :) Please, everyone, before you make fun of that fat, sweaty, stinky, greasy, hairy person that you see, please consider their feelings, and consider that they might have a health problem that is beyond their control! They don't like looking at themselves any more than you do, and they have to live with it every single day! Doctors miss this diagnosis ALL the time! They say it's rare. That's not true! It's just rarely diagnosed! Cushing's patients often go from doctor to doctor, trying to find out what is wrong with them. They are not hypochondriacs, looking for an excuse as to why they are fat. They are very sick people who are not getting the proper medical treatment, and doctors are not listening. They only see what they want to see!

Do you know someone with Cushing's symptoms? If so, please learn all you can about Cushing's, and help them learn all they can about Cushing's. Cushie's need lots of love and support as they go through this disease!

Sunday, April 1, 2012

What is Cushing's Disease?

Cushing's Disease is caused from a tumor. The most common location for the tumor is in the pituitary gland. The next most common place is the adrenal glands. After that, the next most common place is in the lungs. The tumors can be anywhere, but those are the most common sources.

The tumor secretes a hormone called ACTH. The ACTH tells the adrenal glands to put out more cortisol. This causes an over abundance of cortisol in the person's body. What is cortisol? Cortisol is the natural steroid our bodies make. We have to have cortisol to live. However, too much cortisol causes major destruction in the body.

Throughout this month, I plan to talk about how Cushing's Disease has affected my life. It spares no part of our body or mind. It's a horrible disease!

I had a pituitary tumor. It was only half of a millimeter, but it was wrecking havoc on my entire body! That tumor was removed, and I had a brief remission of 3 months. My symptoms began to reappear, and I started testing for the disease again. I did not have new tumor growth showing on my pituitary, so we took out both of my adrenal glands. That surgery is called a Bilateral Adrenalectomy, or BLA for a shortened version.

I am suppose to be "cured", but when you take out your adrenals, you trade one disease for another. I will forever have Addison's Disease. However, I still have some symptoms of Cushing's Disease, and suspect that I have a bit of rest tissue where my adrenals use to be. Finding that is like finding a needle in a haystack.

I do not regret any of my surgeries. I am better off than I was before my surgeries! I really wondered if I would live long enough to get on the operating table, I was that bad! I felt really good for the first 7 months after my BLA, and made lots of progress. Then it all stopped, and I started gaining weight again. A lot of weight! I put back on 50 lbs. within 4 months! Then it stopped, and I've lost some of that. For quite a while now, I have not felt very good. Each day is a struggle. I don't know what I will feel like from day to day. Some days I feel half way decent, but it can change within hours. Most days I'm very tired, dragging, and no energy at all. I'm pretty sure I have Dysautonomia as well. That is dysfunction of the autonomic nervous system. The problem is, there are not a lot of doctors who diagnose it. The best in the state has a year waiting list to see him and they won't put me on the list until they have all of my records. That's a huge task! I also know that I have Fibromyalgia and Chronic Fatigue.

All in all, I'm still better than I was with Cushing's! I'm just not back to being healthy. I may never be. I've had Cushing's all my life. I believe my mother had it, and we are discovering that my children have it. It looks like it's genetic for us. I don't want my blog to see down and depressed, but I want to be realistic about how Cushing's makes us feel, and all of the aspects we have to deal with when having this disease.

Anyone reading the blog, feel free to ask about certain symptoms, and I'll answer! The whole idea of this is to bring more awareness to the public about this disease!

Monday, March 26, 2012

Cushing's Awareness!

During the month of April, I plan to blog every day about Cushing's Disease. This is to bring more awareness of the disease and help those who are suffering with the host of symptoms that Cushing's brings.

Tuesday, March 6, 2012

Juicing fruits and vegetables...

As part of our journey to better health, we have started juicing. We are not juicing exclusively, though. Maybe at some point we will. We are still eating protein and occasionally some other foods as well. The first few days were kind of rough. I had a very bad headache from it. I still have a slight lingering headache that comes and goes. The hubby didn't feel nearly as bad as me. I suppose that is because my body is more toxic than his, which makes sense. I'm the sick one. Hopefully, I will lose more weight while jucing, but mostly, I just want to be more healthy, and use this as a way to incorporate some of the fruits and vegetables we don't normally eat.

Monday, January 2, 2012

My office/craft room

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.