1 year post op: kick me while Im down why dont you?

Im sorry its been a while since my last update. Ive been so down and low in energy, and depressed that I just havent wanted to. That and I really feel like no one cares. 

Since my last update, I lost my insurance, and Mrs. Zebra lost her job thanks to the stalker and a co-worker dogging on her so much she snapped. Both of us are unemployed, both are sick. Im not sure what we are going to do, but we both feel we need to move west. Please, if you can, donate to help us move closer to Dr. Ludlum, by clicking the button in the upper left hand corner.

Last week, I had my 1year post op. I felt like crap all day after my Cortisol Stimulation Test, and couldnt get out of bed the next day.

I got a call from Dr. L's office today and I was kind of frustrated at it. Those of you who know what is going on with me might know why, but in a nutshell I had my pituitary slaughtered to rid myself of the tumor inside. They missed some, my numbers never crashed, and my pituitary never woke up again. In September, and January, same thing. I went to Seattle to do yet another CST, and now they are saying I have enough ACTH and cortisol to be life sustaining, but I still have Cushing's. My frustration comes from this: Later last week, I coudlnt get out of bed. Actually, I felt like crap all day Wednesday (the day of the test) and couldnt get out of bed Thursday morning either. So assuming Im still cyclical, and assuming my pituitary, until last week, was dead or zombified at least, wouldnt it be the TUMOR causing that? And if it is, is it really smart to be weening? How do we know if it is or not?

They want me to ween by 2.5mg a week, which is very slow. But last time I tried weening I ended up in the ER each time. I probably should have been in the ER last Thursday but I hadnt thrown up my stress dose (thanksAdrienne Brandstetter) and thats usually the point in which I go. What do you experts think? I know 20mg/day is high but if it is the tumor doing this, is weening off the steroids really that smart?

The pit is dead still, because Im not making GH or Testosterone either. The tumor is the only thing that could be making ACTH, even according to them. So why ween? If the tumor was "ON" that morning, even at a low enough level to look normal, I dont understand why that means Im ok to ween.

I hope this gets sorted soon, or I dont know what will happen.

Frustrated Weary Zebra

A rock and a hard place

Well, its been a rough road. Its been a while since I did an update so here goes.

First: after the six months post op, I am not completely better. In many ways, I am worse. But the docs told me to expect much of this and I was a bit to optimistic when I began this journey. We still do not know conclusively if I still have Cushing's. The MRI that was taken last week doesn't show any tumor left, but I still show many cushing's symptoms. We cant test to see if I still have it because I have a massive sinus infection since surgery and the last few months I have had to take massive amounts of steroids to just keep it at bay. Those would throw off any testing on my adrenals.

My pituitary still isn't working. I am low on several hormones, including testosterone and growth hormone. Because of this, I hurt all over and many of my systems are not working correctly, including my immune system.
And because of my sinus infection, I am due into surgery in the next few weeks. Thankfully it is local, at UT Southwest. But these guys dont like me much. Hopefully they will now, since I am going under THEIR knife. Its supposed to be as bad as my immediate post op from pituitary surgery. Fun stuff. Just found out today!

So hopefully none of this will affect me trying to get back to work. I miss cutting video and making graphics! I need to stay off of work, but waiting on disability will break us. We cant afford to wait years. Maybe I can find a loophole in the mean time.

More to come as it happens!

Posted via email from The weary Zebra: Zebra Snippets

Dejected

What a day.

I went to my 2 month check up on Monday. I had two doc appointments and a battery of blood tests. I got the results yesterday. Most of the results I was ready for. I am extremely low in all my hormones: Testosterone, prolactin, Growth Hormone. I was prepared for that. These things are fixable. Or at least I thought they were. What I was surprised at is my cortisol is still higher than it needs to be. They want to retest, but cant until I am completely weened off the steroids. That should happen within a few weeks. They warned me I was an oddball case. Im not worrying over the cortisol as much. Im worried about the other hormones right now.

Without Testosterone, I dont have the energy or motivation I need, and the lack of it kills my bones. The GH will also make me feel better and help my mussels rebuild. I cant have the GH yet because my sugar was high the day of the test. I had been out of my meds for a few days and coupled with stress, didn't help my sugar. So they want proof it is ok. Plus, if I DO have a tumor still, or even just tumor cells, the GH will make them grow faster.

I was going to get the Testosterone perception, but that might kill my chances to have children. The docs suggested I see a reproductive specialist to get other hormones that can boost my testosterone. The problem with this is that out of all the reproductive doctors I have talked to, most do not deal with men, and the rest just tell me to go back to my endo. I HATE doctors here!

So Im stuck. I dont know what to do. I was hoping I would stain deficient because I could get meds that way, but I cant get any meds. I am beginning to think surgery was a bad idea.

The Weary, Dejected, Zebra

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7 weeks post op

Well, its been a while since I posted a blog so I thought I would. I have weaned from 90mg, or 30x3  day to 20mg x1 a day. I feel deflated by 2pm, which is 6 hrs after my dose. I have no strength or energy to do anything. I hurt constantly, but except for needing help up and down and showering, I seem to be taking the weens better now. I found out last week that I can't drive without a high dose in me yet, and I still have nights I can't sleep.

But at least my appointment with Dr. Ludlum is a week away. I hope he hooks me up with some hormones. I have not regained any sexual urge since before surgery. And other Cushies tell me my growth hormone is probably low now too. But hopefully we will find out soon.

I'm getting stir crazy so as the weather starts to cool in the morning (we wake up in the low 80s now) I have been trying to get the mail and will be trying to go for a "swim" in the pool, which is really just laying on a float or wading in the water until I exhaust myself.

Keep us in your thoughts. It's time to lay down.

The Weary Zebra

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Post Op Day 9

The last nine days have been like nothing I have ever been through in my life.

I must first apologize for being so late on my update. I have been relying on Mrs. Zebra to update friends and family but she has been exhausted the last few days as have I. Spending more than 20 minutes looking at a computer monitor makes me physically ill. This is problematic since my only link to the outside world is social networks like Facebook, Twitter, and the Cushing's Support site.

On Tuesday, July 13th, 2010 my life changed forever. At least I believe that it did. I had 70% of my pituitary gland taken out to ensure the remaining 30% was tumor free. The surgeon, Dr. Marc Mayberg, believes beyond a shadow of a doubt, that he took all of the tumor out. The part that worries me, and to a smaller extent the doctors, is that my cortisol numbers DID drop below 2.0, but did not stay there. I have not had my levels checked since I was discharged that Friday, but it feels like I did crash and stay low since then. Let me tell you, the surgery is touted to be a simple one from a neurosurgeon's standpoint but is nothing short of hell. I woke up to crushing pain from my head, and the Diabetes Insipidus was already flushing my body of liquids. Every part of my body was heavy and ached. Every sound was like an ice pick into my skull as was every beam of light. Blood freely flowed from my nose as did Cerebrospinal Fluid. Thankfully the two CSF leaks I had quickly healed themselves. Then came more blood. During surgery, blood drained into my stomach. It came back up. Mrs. Zebra said walking into my room was like walking into a horror film. I was screaming for help because I had to use the restroom and I was bleed everywhere. All of this masked the pain from my abdomen for days, where they took fat to plug my pitutary cavity. This surgery is something that, unless completely necessary, I do not ever want to go through again. It was as if all the years of suffering were boiled down and injected into my head at once.

This is but about 1/3 of what came up. They dumped the other two before Mrs. Zebra took this.

The light and sound sensitivity were present right up through my discharge, but one other side effect that was not explained to me still lingers. I can not smell or taste anything but sweet and sour. Spice is an acid so its effects are felt, as well as the effects of salt, but nothing else. This makes every meal very depressing. 

Each and every morning is hard to get up, worse than my "crashes" before and now that I have started steeping down on my medicine I shiver under my covers from being cold. For the first time in my life, the air conditioning at night is too cold for me. I am not complaining, mind you, just amazed. Between my lows in the morning, my aches and pains all day, and my cold at night, at least for the moment I think my Cushing's is finally behind me. 

I take steroids to help me function through the day. Dr. Ludlum gives high doses of Cortef to start, 30mg three times a day. Enough to give me back my Cushing's if stayed on too long. So he instructs to ween by 10mg every 4 to 7 days. I started my first ween Tuesday, day 7 after surgery and 4 days after I started surgery, so I did. I felt it for sure that night. I slept much better than I ever have. Last night, the only thing that woke me up was the nausea that ripped through my body. Not enough to make me throw up, but close. Each day I am vigilant in looking for signs if Adrenal Insufficiency. What worries me is that I truly dont know what A.I. is like because I dont know if I truly every felt it. What is A.I. and what is nausea from drainage from the never ending head cold I have now?

Besides the drainage, and the nausea, the fatigue is more than I could have anticipated. Even on the high doses of steroids, just getting up to use the restroom that is 25ft MAX away from my spot on the couch is enough to make me feel weak and tired. Milk jugs, water pitchers, even my Macbook Pro are way to heavy to carry further than a few feet. This makes dealing with every day events hard. Especially the fact that my Diabetes Insipidus is just barely under control. 

My days since arriving back home have consisted of resting and letting Mrs. Zebra's Father help with cooking, cleaning, and the like. He has been a huge help and when he leaves he will be missed more than he realizes. He is giving both myself and Mrs. Zebra a much needed break. For now, I focus on healing and fixing the vast sums of medical bills that come in. $100K just for testing is a bit much, but it is getting take care of. Mrs. Zebra is next. Hopefully she can either get on the new state insurance plan paid for by the new federal law or we will have to do something drastic. She is showing more and more symptoms of this dreaded disease every day. It is a horrible disease, and an almost as equally horrible ordeal for remission. I wish this only on those who refute it's existence or refuse to understand what living this way is like. It is nothing to wish for. My net time is about up for now. Time for a nap.

The Weary Zebra

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The Porcelain God

This is what I saw most of yesterday. Well, this isn't MY toilet, but you get the picture. It all started Sunday night. I think I overworked myself when I got my "high" by doing some major cleaning. Well, trying to anyway. Moving furniture, boxes, my wife yelling at me to stop. I should have listened. I got light headed and laid down. About 10 min later, I couldn't move. It hurt to breathe. I was nauseous, dizzy, and confused. I figured I had just done too much so I went to sleep.
By 6am yesterday, I was puking my guts up. I had to about three times before I left out the door for work. A little cola and I was fine for a few hours, then visited the porcelain god four more times in 4 hrs. I couldn't concentrate on work so I left and spent the entire day in bed, trying to either sleep or find out if this was a bug, or a sign I have cyclical cushing's.
I read later that evening if I put 1/4 teaspoon of 1% hydrocortisone cream (anti-itch) that if I was having Adrenal Insufficiency symptoms, it might help pull me out. SO after throwing all day, thats exactly what I did. And about 30 min later, I had an appetite (small one, but it was there), and I didn't feel as achey or dizzy. I don't believe in coincidences, but Im still not 100% this morning. I guess either way, its Cushie. Either its cyclical, or just bad immune system. Oh well. Hopefully, Dr. Ludlam's office will get a hold of the insurance company and I can be on my way to a cure.

The Weary Zebra
 

Posted via email from The weary Zebra: Zebra Snippets