I received a call from the specialty pharmacy that sends Humira to me. They were checking in to see how I was progressing since I started taking Humira. This was before the miracle big toe discovery, and at that point I really had nothing to report so they went through a series of questions. How does my arthritis effect my daily schedule? Does it limit dressing such as tying shoes, buttoning buttons? This series of questions made me realize that even though I have made alterations to my life to accommodate my condition, I sometimes don't realize how much. Some things are small changes. They become ingrained into your daily life so much that they don't seem like accommodations as much as just the way it is. Until someone actually points it out to you, you forget that anything was ever different.
One example is buttons. Does my arthritis affect my ability to put clothing on because I can't button buttons? Well actually no. Not because I can always button buttons, because I can't. It doesn't affect my life because I just don't do buttons anymore. I have maybe 2 shirts in my closet that have buttons and they've been hanging untouched for about 2 years. I buy my jeans a size too big so I don't have to deal with the button, I can just pull them up already buttoned and zipped.
This got me to thinking about how many things I've adapted in my life to accommodate my growing limitations. I still cook and I love to cook, but I don't do any fine chopping or cutting anymore. I don't hand whip and mix anything anymore. I have bought a stand mixer and 2 sizes of food processors to do these things now. Yes I realize these are appliances that many people without limitations own, but my whole purpose in purchasing them was because I needed them to continue doing something I love. I almost always wear flip flops, sandals, or slip on shoes. Not because I live in Texas and it's required shoe attire, but because tying shoes is nearly impossible on days my hands are swollen and stiff. There are a lot of days when I just can't get my feet into shoes, but shoes I can slide on and off are doable for times I have to go somewhere. Every purchase that has to do with daily living has some adjustment for my condition. I switched from a manual transmission car I loved to an automatic. I bought a bed that is high enough that I can ease down onto my feet in the morning and isn't too high so I can sit on it without effort. I also have learned not to be quite so OCD. If don't have to vacuum and dust every Tuesday, I don't need to scrub the grout on the shower every third Saturday. I do these things when my body feels up to it, and that is OK.
All these things are just part of my life. I don't think about them anymore. It's usually unconscious decisions because this is how my life is. I once had someone ask me how I could be OK with how much my life has changed especially over the last few years. My answer after some thinking on it was that we all have something a little left of normal. We all make adaptions in our life for that. We don't stop living. We adjust, adapt and overcome. We celebrate life for it's blessings and joys, and try to not let the bad moments be the only thing we dwell on. Life goes on and so do we.
My good friend, Mary sent me your link, as she knows I also suffer from very severe psoriasis. I'm also starting to get the first effects of PA which has been very frustrating. I look forward to seeing more of your posts.
ReplyDeleteWelcome! I hope you find some information that is helpful, or at least some empathy. Sometimes just knowing I'm not the only one makes me feel a little less like having a pity party :)
ReplyDeleteKeep it going Heather! I think you met my good friend "anonymous" many years back.
ReplyDeleteMary
Hmmm now I'm curious :) Really I'm curious why it is making everyone Anonymous.
ReplyDeleteThank's for the referral Mary! I hope I can keep it going for at least the year. Sometimes I feel like I'm talking to myself, which lets be honest is probably a step up from talking to the cat, but then I see the page stats and I am floored at just how many people have found this and are reading everyday :)