The weary Zebra: Zebra Snippets

Sick AND Moving

Yes, we are moving. No longer do I have to take this heat! How can we afford to move, you ask? I cant tell you. Not yet. I will be able to after the move, for sure. Its a tricky predicimate. Honestly, Im hoping the lawsuit against Capture the Market goes through before December, but that is going slow. Mrs. Zebra has finally stopped getting harassed, for the time being at least, and is slowly getting her new career online. It really sucks being sick, and needing to work. In any other industrialized nation in the world, we would both have jobs and be on sick leave until better. End of story. So we are doing the closest thing we can and leaving Libertarian Texas for a more kind and gentler state- the great Soviet of Washington! LOL! Yea, not really. But still going to WA. My doc is there, and more friends family are there than speak to us here. I will miss my sister, brother, dad, and my close friend from child hood, but it will make visits that much better.
But, we have been trying to move for three years this October. We live surrounded by two year old boxes full of stuff we need, but have no room for. And we dont have the energy to unpack, repack, move, then unpack. Hopefully getting to WA will allow us to afford a storage unit or garage to store our heirlooms and stuff.
I have been in quite a low the last few weeks, but I think Im coming out of it. Mrs. Zebra is going into a low though, so its time to step up and do my share. But because of my limited energy, I cant make good on commitments I have made to others. It makes me feel horrible enough that I cant support my wife yet, let alone the feeling that I am making others upset that I am a flake. But soon, I WILL be making money. IN WA, I have a "job" of sorts that will allow me to work from home, and finance our health and eventually my first documentary.
Sorry for not blogging more but with the low energy, and the harassment, I just didn't feel like it.
The Weary and Depressed Zebra.

Stalker from former employer

First, I want to thank everyone that reads this and either shares it or offers advice, or any number of positive things. It helps me cope with the aftermath and the long road to recovery I am on. Thank you all so much. But there is at least ONE person who is sitting at their computer, reading this, that has decided that they know more about me and my condition, they think I am faking or lying about my condition and have decided to threaten my wife and I. They worked with me at my former place of employment, and have taken it upon themselves to break the law and send a harassing and threatening letter to Mrs. Zebra's place of employment. I keep her, and my name for that matter, off here for just such reasons, but there is only a three people at my former work place that I have told exactly where she works. And one of them actually had her husband look into getting a job there. So Im pretty sure who this was. So this post is for that person.

Waiting

I know I havent done an entry in a while. Mostly because not much has changed.
I had sinus surgery almost two months ago and while I am breathing a bit better, Im still not out of the woods as they say. Its not healing properly, probably due to the extra cortisol Im still producing. At least, I think I am producing. I am having cushing's symptoms still, and they are getting worse. I am waiting on a medfusion from Ludlum but they are supposed to call me. That will prompt a 8am blood test to see weather or not I need a full work up or not. And my insurance runs out after april. If I want, I can pay the full $600/mo but thats one unemployment check. So unless something happens soon, Im screwed. Im still waiting on growth hormone from Dr. Ludlum and honestly I dont know what to do at this point.
The last few weeks, I have been so depressed. I cant find work, I cant get my hormones fixed, and now Im about to not have insurance anymore. I just hope something happens soon to fix this.

The Weary, and worried, Zebra

Sinus Surgery

Today is day three of post op sinus surgery. I had surgery on Thursday, and it ie yet another one I really would rather not to again, but might have to anyway.

Apparently, the swelling was so bad, the ENT could not finish after four hours and gave up. He did fix my septum, and I have the splints to prove it. And he packed me full of foam for some reason. He didn't tell me anything about what he did, and told Mrs. Zebra very little.

This is so much worse than the pitutary surgey for the simple fact that at least with that surgery, I was kept as comfortable as possible. This time, they gave me low strength vicodin and said tough it out. I hate the doctors here, and I really get the feeling they don't like me at UT SW. They have on my file not to give me oxycotton or dilaudid, even after the latter was explained. Why no oxycotton? Got me.

The Weary Zebra

Laid Off

Due to medical, or the economy, or whatever, I was let go today. It was supposed to be my first day back and although I wasnt ready to go back to work physically, I was a little excited to get back in the editor's booth.This is has been such a hard year, I really hope and pray this is the last major obstacle we have to deal with. Im not sure either of us can take much more.
I have some options in both regarding this position, and others. But I am forcing myself to take one thing at a time. It is so hard dealing with this when you are so sick. I dont know how people do it. I really dont.

The Weary (jobless) 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!

Latest in my fight...

I know I haven't updated in a long time so I thought I would. There hasn't been much to update honestly. I still feel like junk, but its slowly getting better. I still have no Growth Hormone, and my sinus infection is as bad as ever. I finally got a perception for nebulised antibiotics but I cant find a place that will work with my small insurance company named Blue Cross/Blue Shield.
My motion sickness that was going away, has come back and the steroids Im on now for the infection make me SICK AS HECK!
The good news? Well, the swelling has REALLY gone down. I have dropped several pants sizes, which is nice. Now I just need to quit sweating when its 20˚F outside!

2.5 mo post op: ugh...

Sorry I have not posted in a while. I've been extremely depressed for weeks now. The lack of growth hormone and testosterone has really done a number on me. I still have no function in my pitutary, at least as far as we can tell. But u am having spikes of cortisol that I can feel, and it sends me into a panic rage. This is consistent with the post op cortisol numbers that never stayed below 1. This means I am still not producing growth hormone, which would give me energy and motivation, as well as help with the aching and stiff mussels, and not making testosterone either, which would help my motivation and depression too. I am taking HCG to make me produce testosterone, but I only see small improvements, none effecting my mental state. This is also week 5 of the third sinus infection I have had dice surgery. I'm on ky 2nd round of antibiotics and nothing is helping. I'm scared to go to the ENT because last time they sent me to UTSW and they hate me there, prompting them to send me out the door and not filing correctly with insurance and charging me with the full bill. I'm still fighting it. I'm tired of being told I should be better, that I need to fake it, that I just need to get over it. No, I feel miserable, I feel like a giant green blob is inside my nose and lungs, I have not tasted or smelled a damn thing over a month, I can't sleep, and I refuse to take peoples crap anymore. Either there is a tumor somewhere, or my pitutary is freaking out and trying to wake up in spasms. That's what I'm hoping for anyway. I never want another pitutary surgery again...

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

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