Day 3 Assignment: Explain your RA.
*** After all these years, I still had a hard time with this topic. I decided to re-work a previous blog. So here it goes…
Living with autoimmune diseases is a never ending journey. I’ve had people tell me that “But you don’t look sick”, and “Do you know that you are limping?”…hmmmm….you really think I didn’t know that I was limping? Ok…I admit it, sometimes I don’t know…but most often, I do.
Each day is a journey because I never really know how I will be feeling. Some days I wake up and feel just fine. Other days, I wonder how I am going to make it through the day. Simple every day things like pulling on pants, taking a shower, or opening a bottle of water can be almost impossible. A good day means I can go grocery shopping after work and get items off the high shelf. On great days, I can clean my house. The lack of control I have over my body is very depressing.
When people ask me about my disease, I tell them I have a systemic autoimmune disease that attacks my joints and connective tissue. I acknowledge how painful osteoarthritis is, but make it clear that is not what I have. In addition to swollen joints and pain, my disease feels like the flu, I run fevers, I get rashes, and some of my internal organs have had damage from a combination of RA and the medications take for it. My disease laughs at OTC drugs like ibuprofen. I manage 14 prescriptions to keep my body moving. I inject myself with a biologic drug weekly. This drug cocktail allows me to have some good days.
This disease can be so depressing. There was a time when I had way more bad days than good. I think back and remember that there was a time when I wouldn’t tell people that I felt good. I always thought that I was letting them down when I suddenly wouldn’t feel good anymore. I would hear “Last time you felt good, what happened?” So complicated to explain. Now I say, “Today is a good day” when things are good. I’m so used to living with pain that I sort of feel lost when I am pain free. Not that I miss the pain, it’s just that I feel so different without it. It’s almost like my enemy is my friend…even when I don’t want it to be.
I am honored to be a part of #RABlog week. Follow the link to read the other amazing blogs included. http://blog.wegohealth.com/2015/09/21/the-first-annual-rablog-week/
I've gotten to the point where I don't always know that I'm limping. Sometimes I waddle a little differently and people like to point that out.
I sometimes tell people nothing is wrong with me. I love to do that as I am using my cane and moving slowly in the grocery store. Those who know me well know I am teasing. Those who are passing acquaintances wonder if I have lost my mind. Oh fun times. 🙂
That happens to me, too. People act so odd when you limp. PT seems to help me a lot. Hope you are well.
That is awesome! Humor gets me through most of the pain.