Showing posts with label sinius. Show all posts
Showing posts with label sinius. Show all posts

Lost

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As I am writing this, my brother is being memorialized back in Texas. On November 12th, 2012 he was in a horrible accident and is no longer with us. Luckily  no one else was hurt in the accident. But he left a huge hole in the hearts of his friends and family. Thanks to this wretched disease, I cant afford to fly back and be there like I should be. Ive been having to stop my steroid taper not only because of the stress of his loss, but of the constant attacks from family that, until Monday, wanted little to do with me. If you have read my blog before, or even know about Cushing's, you know that people dont understand this disease from the outside. And instead of trying to understand, or just being understanding, most people turn to neglect or even hate, to deal with you. Well, thats happening right now.

My brother and I were always closer than we were to our sister. Its not her fault, really. Just circumstance. But after she married and had children, I really tried to get to know her. Even if it were just as friends, I wanted to be part of her life. I wanted my nieces and nephews to have cousins to look after and big Christmas gatherings. But the last 10 years has been hard on everyone. Im chronically ill, our mother died of complications of what I believe was Cushing's, my brother was uprooted and moved out to the country because of financial reasons, and my sister has had to re-establish herself so many times that I wonder if she will ever find a place in her life where she can just let her guard down.

After our mom died, she really came and joined the family again. I know its hard. She only had three families to try to see: ours, her husbands, and her ex's. But at some point my sister decided she no longer wanted to return phone calls or voice mail from anyone from our side. I didnt want to push it, but after months of phone calls from me, my brother, my dad, and even my wife, we all just gave up. She claims it was a technical issue, but I dont know any handset issues that effect the kids cell's too. I still think its something to do with me, but she doesn't want to hear it from anyone so she just cut everyone out.

Thanks to this disease, I cant afford to fly back to Texas to pay my respects to my little brother who died at 23 years old. Thanks to this disease, I have lost the only mother Ive ever known. And thanks to this disease, I have lost my sister. She decided that, instead of talking to me and having a family, she would rather not deal with me. Even in the wake of our brother's terrible accident, she wont call. She writes to me via Facebook, but I wont read her words anymore. They hurt too badly. She knows we tried to call, but still wont call and talk to her brother, who may never recover from this disease.

So I sit here, absolutely lost. I dont know what to do. I want to talk to my sister again, but cant until she wants to. I dont know how to handle this. By all rights, it should have been me. He had his whole life ahead of him, while Ive been sick my whole life. If I had died, no one would have been surprised. It wouldn't hurt this bad. I wish I could fix all this. I wish I could fix our family and have everyone come out to our enchanted forest and have a good time. But how do I get from here to there? I dont know. I mean, Im working on my phone anxiety. This disease isolates you. Some days its all I can do just to be social online, let alone in person. I just wish I could get my sister to understand this. Or anyone really.

I escaped death 3 weeks ago when I went through surgery. But I should have died. My dad escaped death when he survived his motorcycle crash and surgery. So much death. I wish I knew what to do. I just want us to be family again. I love my sister, despite all faults. And I choose my family, and I choose her. Just like my father decided he didn't want me, but my dad did. I just dont know what to do.

Im so lost.

A rock and a hard place

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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

Latest in my fight...

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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!

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2.5 mo post op: ugh...

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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 I 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 since surgery. I'm on my 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...
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