So it's been a while since my last post, and there's definitely a good explanation. This disease is kicking my butt! Yes, you heard me right...no matter what I do it seems to be an epic fail.
The last time you heard from me I was waiting to get back on my Humira shots to hopefully get rid of some of this pain and slow down the progression of my arthritis. Well, so far that's been a no go. While I did get in to see my doctor, and I did get my part of the paperwork sent in to Abbot for their patient assistance program, my doctor did NOT complete his part. See, when they send you the paperwork they send both your part and the part the doctor has to fill out; they also send the same pages to your doctor. I don't even know how to say what I think about my doctor, because he got it in his head (he did this the first time around, too even though I fully explained it to him!) that since he had both parts of the paperwork he had to wait until I came in for my next appointment so he could fill my part out with me. It never crossed his mind that I am an intelligent woman capable of handing MY end of things on my own...so my part has been sitting with the company now for over a month, just waiting on a doctor's prescription and signature so that I can get my shots. Grrrrrrrrrrrrrrrrrr!!!
In the meantime you may be wondering what has happened to me health wise... Around the time of my last post I broke down and bought myself a cane from Wal-Mart. Some days it is great and other days it doesn't help because it's my right side that needs help, which means putting the cane on the left and that is where I have the problems with my finger, so that makes it difficult to grasp the cane. Anyway, the pain in my right knee has increased dramatically; I can not even bend my knee when I walk most of the time, it's like trying to walk with a cast and no crutches. Getting in and out of the shower is quite difficult, and so is actually taking a shower. When you can barely move without pain and can't stand up for long it's rather difficult to accomplish certain tasks. We are now looking at getting a shower chair. :( I have also made it to the point that I now have to use a wheelchair when we go shopping because if I don't, I have to rush us through the store so I can get off of my feet, and when I do get off of them they are swollen, turning blue/purple and hurt immensely. On top of all of this, the severity of my psoriasis itself has increased. I am now 85% covered in red/scaly patches.
All of this has put me in a rather bad mood. Lately I spend most of my days sitting around feeling miserable and crying. I cry when I hurt and I can't get out of bed, or the chair, or off the couch. I cry when I can't stand in my kitchen for 10 mins to cook dinner or wash dishes; when I don't have the energy to take a shower, when I can't pick up my son or hold a book up long enough to read. I cry when I can't bend over to get laundry out of the dryer, or summon up the energy to fold it if someone else takes it out. I cry because I don't understand, I don't think it's fair and I often wonder if it will ever get better.
So the realization part of today's post comes from this last statement. I have now realized that I've been hoping for a miracle when I finally get back on my shots, and I have also realized that I may very well be setting myself up for a letdown. While the Humira may offer some relief, this time around due to the amazingly fast progression of my disease, it may not work as well as it did in the past. This afternoon when I woke up from a nap, I began to wonder what is going to happen if things don't get better. What if this is the best I will be from now on? What will I do, how will I manage, what effect will this have on my marriage, and on my son, how will he be taken care of should this somehow turn out to be a fatal issue? That, I think, is my biggest fear. I've never heard of arthritis being fatal, but with all of this pain it leads to concerns about hip or knee replacements, hand surgery, etc... and it just seems like there is no end in sight for the pain. How does one go on like this for years?
Well, even though it doesn't seem like it, I'm trying to keep a positive attitude and hope for the best. Please keep me in your prayers, and my family who has to deal with me dealing with this..they need it!
P.S. I want to say a great big THANK YOU to my husband who continues to support me throughout all of this; who constantly takes my place making dinner, doing laundry, taking care of the baby, helping me get around and bringing me things when I can't get them myself; and who consistently holds me, caresses me, shows me affection, and tells me how much he loves me. I LOVE YOU, Sweetheart!