Reflecting on my life these days

[justej]

On Tuesday I got diagnosed with an autoimmune disorder called HS. I have a new body wash to use, topical antibiotics and I will be starting humira. Which is a hell of a drug. I crawled into the bathtub to take a shower tonight and it just hit me. This is not how my life was supposed to turn out. Amputee. Urinary and occasional bowel incontinence. Autoimmune disorder. Depending on others to help with daily activities. I will say though that I am grateful for the help. I have enough diapers and wipes for the rest of the month. I have friends who helped me get some groceries. I have a roof over my head. My rent is paid. I have a home health aide that, while challenging at times, can be helpful. I get my new prosthetic leg on Monday! My incontinence used to be debilitating. But it’s old hat these days. I hope everyone is doing well.

[wayne]

Man, I'm very sorry about your affliction. Your sense of humour is going to be even more important as time progresses. Don't be afraid to lean on people around you to help. I wish you the best that can be hoped for.

[JDinVirginia]

Hang in there just. You are doing everything right.

--John
(double incontinent)

[Patrick]

After the initial shock of discovering that you are incontinent wears off, the day-to-day grind of incontinence management can seem like the drip of water torture. I am sure we all have such crises of depression. However, I do take pride in managing my incontinence successfully, dealing with it without causing any disruption in the lives of folks around me.

[justej]

Patrick - I agree. I’ve had to have help with my incontienence in the past. I also have to have help taking out the daily trash bags of diapers, which my aide helps me with. But I do pride myself in the fact that, while it’s difficult, I shower on my own. When unable to use my prosthetic I get my wheelchair in and out of the apartment on my own and I even visit with friends for coffee sometimes. I’m pretty much 90% homebound. I have physical therapy and many many many doctors appointments but other than that and my rare occasions of seeing friends I see no one other than my aide. When I start the humira it will render me immunocompromised. I’m kinda scared.

[Patrick]

I have seen numerous TV commercials for Humira. They paint a rosy picture, holding the possible bad side effects to the last few seconds, and print too small for me to read. These new biologicals are a brave new world for medical science; I hope your experience will be positive.

[justej]

Thanks Patrick. My doctor is pretty hopeful that humira will work well for my hs.

I had a great day today. I got my new prosthetic leg and I LOVE it. The design I did worked out so well and it fits great. It’s an adjustable socket and since my volume of my residual limb is always changing I can just move this little knob and adjust the fit.

I even had a coffee and it didn’t give me issues til late in the evening so that was good! I have my first pt with my new leg tomorrow at 4:30. I’m gonna lay off the coffee though cause I’ve had bowel issues before during pt.

[JDinVirginia]

That is great news, Just!

--John
(double incontinent)