My first year in the chair, I got up to using my walker to go from the living room to the kitchen to wash dishes, without using my chair, but then I lost the strength after a skin graft and a month in bed.
The skin graft lasted a while, but the pressure sores came back. It became a race between the sores eating to my bone and regaining the strength to stay out of the chair some. Of course, I was fighting infections in my pressure sores, and some doctors who wouldn't listen. I know that shocks all of you who have had interaction with the medical profession.
I did get back to the walker last year, and shuffling from room to room again, but....
Eventually, the sores won. My ischial tuberosities were exposed, and I began to get bone infections. The infections ate the rest of the flesh off my butt, and this last November, right after Thanksgiving, I went in for skin flap surgery to close the wounds and cover my bones back up.
You can look up skin flaps if you want, but the relevant fact is that recovery requires 8 weeks in a hospital air bed without sitting up, or even bending at the waist more than 30 degrees. It was miserable, and debilitating, but now I'm home again.
But, I came home with complications. MRSA in a fluid pocket which developed in one of the skin flaps, and C. Diff. The good news is that I finally found a team of doctors who will keep me on low dose antibiotics to prevent more infections, and I am recovering strength faster this time than last time.
So, the bad news is that, even with insurance through my wife's work and Medicare, 8 weeks in the hospital is expensive. Especially since I stayed through January, when all of my deductibles and out of pocket expenses reset. And, I am on some very expensive drugs for a while to clear up the MRSA and C. Diff. I think I have also found a chair cushion that will work to protect my ass while I work on walking again. The cushion I'm looking at is about $4000 before insurance. We haven't even priced the back brace I need yet.
Of course, Medicare doesn't cover it. Or my insulin pump, or my catheters, etc.
So, now the hard part. You know I have a hard time asking for help, but I am on a time limit, I've already sold my favorite toys, I need new equipment, and the bills are piling up. I'm asking you to donate if you can to help cover my expenses.
So, why should you? What makes us think that I can finally get up and stay up this time?
First, the bone infections are gone. That was making me weak, and the doctor I had just couldn't get it under control. Now, my focus and strength are directed solely at walking again.
Second, I am on a time limit. The surgeon said that the skin flaps would last about a year if I don't manage to get up. Very motivating because I am ready to end this cycle.
Third, Alicia and I know more now than we did, and my strength is returning faster than before. We found out that we have to do our own research, and buy our own equipment and just try to argue with insurance for reimbursement. We bought a standing frame for home, and a new knee brace last year.
Fourth, the wound created by the fluid build up is already healing. I just have to keep going in this direction to avoid another pressure sore.
So, I'm not playing Santa, and making a naughty and nice list. I know there is no such thing as extra money. I won't be mad at anybody for not giving. I won't even know who read this and who didn't. But, help if you can.
I will get up this year. We are researching our own equipment needs, fighting for a better cushion, more effective braces, etc. The only question is how long it will take to get the hardware, and how long it will take to pay everybody off.
And, on a related note. If you know anybody who is looking for an online English teacher, editor, voice actor, etc. Let me know.
Disability sucks. There is no overtime, no extra classes to teach, no raises, no time and a half for holidays....
And thanks. To everyone who gives money, and to everyone who just reads this and sends thoughts and prayers. Thank you.
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