Monday, September 22, 2014

Getting Real About Arthritis

Adjust your expectations. "When you get rheumatoid arthritis, you have to adjust your expectations and so does your spouse," Flynn Peters says. The spouse with rheumatoid arthritis may be in bed part of the day and can't contribute to running the household like she did before becoming ill. Everyone must realize the change and adapt, or resentment and more stress will build. If you set realistic expectations — perhaps the spouse with RA agrees to do more on days when feeling better — neither of you will be set up for disappointment.

I just read this in an article this morning. How fitting, as I fell asleep last night at 5:30pm. It describes the exact scene in our home. I have been so frustrated with not being able to keep up with cooking, dishes, laundry and everything. Sometimes I feel like I just can't do it all. And alas, I just can't do it all. 

Some people may not even know that I have rheumatoid arthritis. I guess this is a way to help them, especially my family, understand better. This past 6 months I've been on a diagnosis odyssey. I went back to to the drawing board to make sure the symptoms I'm having are in fact arthritis, although I was once diagnosed with Psoriatic Arthritis several years ago. The symptoms of pain and fatigue (among others) have become strong enough for me to decide it is time to really do something about it. So I began with my primary care physician. We took lots of general blood tests and when my levels were there for an auto-immune disease we began following the trail taking more specific testing until she finally referred me to a Rheumatologist in South Bend. They would have even more specific testing available. So that is what I did. Along with the examination, it was determined that I have what is called a negative rheumatoid. Which basically means some of the levels are not showing up in my blood work, so it may be a different kind of arthritis, but it is treated as rheumatoid. 

I never, ever thought that I would have some sort of chronic illness, but alas I do. The hardest part in all of this is that to most people, I appear perfectly normal. It is a silent secret that I feel pain in my hands, wrists, knees and now elbow most of the day, though some days are better than others, it is always there. I don't say this to make you feel sorry for me. I don't want that at all. I just need others to know that I may need a little extra help now and again. Also to lower their expectations in some ways. I guess, for myself included, I just need to receive a little more grace when I can't do it all. I need to slow down and accept this new challenge for what it is.  

1 comment:

Corey said...

Hey Katie, I came here looking for one of your recipes. I'm so sorry to hear you are not well. I just wanted to share with you: my 18 year old daughter had many symptoms of RA (but a negative blood test).. she tested negative for everything else under the sun as well, as was about to get a fibromyalgia diagnosis until I just refused to accept that. After doing some reading, I felt like she had Lyme Disease, even though she had a negative test for Lyme. We saw a specialist, and she was started on antibiotics (and probiotics) in July. She still has to be careful about doing too much, but was able to return to college and can get through her days like a "mostly normal" kid. Before that, she was getting up at 8 a.m. and was back to bed for the day by 10 a.m.! I don't know if you feel your diagnosis is accurate or not, but I wanted to mention our experience so that if you had any doubts, there was another avenue to explore. Best wishes to you.