Today I woke up to find a post on Facebook by RA Warrior, Invisible Illness Awareness Video which is an interview of Kelly Young by Lisa Copen, founder of Invisible Illness Awareness Week. It made me think about how even when the illness progresses to show the visible damage it is still misunderstood. I remember some of the struggles of the disease as my mother lived with it. Struggling myself to help her while I dealt with fatigue that doctors could not figure out and to keep up with two toddlers. At one point my mother-in-law at the time suggested that my mother needed to drink some gelatin mixed with water each day to help protect and rebuild her joints, so I suggested it to her. Of course I remember her throwing her hands up with her fingers fused like stairways going up and the look of “really”. Sometimes it is hard when I am in pain and remember her disappointments.
I know that was not the beginning of her disappointments, I also remember times she was upset that the drugs were not working. Her complaints to my grandmother about how the methotrexate did not work and the gold shots were not working either. Then my grandmother telling her she needed to keep taking her medicine and her complaining back that the doctor said it would be working by now before she struggled to get up and walk out of the room. She did not really complain often around me but I remember the few times she did.
There also was a time she was told she had to use a ball that she could squeeze to exercise her hands daily, she refused to do that complaining it was just making her pain in her hands worse. I can understand that now when every time I try to write on paper and I can only get so far before hands are on fire. But I still think there is a time to exercise and a time to rest, sometimes it is hard dealing with doing both.
It is hard to take the advice of others and even harder when it is someone that cannot understand because they do not have to deal with the disease physically or mentally themselves. I am struggling with how to keep my posts positive when I feel the lack of complaining could be just one of the reasons why there has not been much financial support for research to help find a cure for this disease. But I can say I am very grateful for Kelly Young and other RA Patients that have started Rheumatoid Patient Foundation to help support patients dealing with the disease and hopefully some day we will be able to find a cure.
At times the disease can be funny though. This morning our water is shut off while the water company is working on the water lines. I just went to the bathroom and forgot when I flushed the toilet. Then walked out and laughed that I forgot and went to the kitchen and put soap on my hands to wash them, duh.
To end here is some more music therapy for you.