I know I am posting really erratically ….really infrequently. I sometimes consider ending the blog once and for all but really, I am attached to it. And it is nice to have a place to write where family will not pry into. It gives me the ability to write freely; uncensored.
On July 6th I had a major surgery on my left ankle. I have Psoriatic Arthritis (PsA) which is a relatively rare disease that is similar to Rheumatoid Arthritis. I’ve had both hips replaced (my left one six times), my right shoulder replaced (the left one needs to be done as it is bone on bone, and now my left ankle is fused. The right one also needs to be done however this has been so difficult and long of a recovery –without a guarantee of lessening the pain I’m in, that I am loathe to go through it again. My ankle joints are destroyed by the PsA. My elbows, wrists, hands and spine are also rapidly worsening despite the plethora of biologic medications that the doctors have tried me on. After Stelara (which I am now taking) there is only one more possible drug for me to try….and the meds only work for limited time….eventually there is a need to try a different one.
I had my surgery and then went into a nursing home/rehab facility for 60 days. Then, since I’ve been home I have been largely house bound, only going out for essential MD appointments. My deck has six steep stairs which I’ve been unable to navigate and have had to call the fire dept. to come and assist me up the stairs. I should be in my wheelchair now, however my house is too small; doorways and hallways too narrow for that. So instead I’m on a knee walker which is similar to a scooter except you kneel on it with your bad leg and propel yourself with the other. I HATE this thing. Yes it has helped me to stay off my feet, but it has REALLY hampered my mobility and the accessibility of my belongings and activities. It makes me short of breath and it takes all my strength to get from my bedroom to the kitchen and back (with a rest in between).
My husband has alternated between being helpful and being just downright mean. Just when I think I hate him he will do something sweet and I forgive him. My case manager is really pushing for me to find alternate living arrangements–without him. Seems like for my whole marriage people have been trying to talk me into leaving. Maybe someday I will have the courage to do that. The waiting list for apartments for disabled people is a couple of years long, as is the list for housing funding. And there is the question of whether or not I’m able to manage by myself in an apartment. I would definitely need an aide which will be available to me while on medicare and Medicaid. So that would probably work out to be less of a strain than it is for me to live here with only sporadic help by family.
I’m sorry –this post has been a housekeeping article, getting you up to speed about my circumstances….it has little depth or insight or pondering. I will try to come back maybe tomorrow …and write some more.
Vaya con dios.