I try to be tough but these last two surgeries have me down and I felt the need to share my story because I know there are others out there with things that have created a bump in their road to fitness and to their event goals. Warning: This is not a positive story so just skip it if it is not your cup of tea. I didnt want to be called a drama queen, so Ive held back talking about how isolating my RA can be. It is not something that you look at me and say, “Wow! She’s got a disease where her immune system attacks healthy tissue.” You don’t see it. You wonder why I’m so slow. How could someone train so much and yet see such pathetic results. You get remarks at Tri group meetings by respected coaches like, “You should try training.” They hurt. It hurts when you can’t keep up with other triathletes and runners when you do train, when you spend 3 hours 5, sometimes 6 days a week at the gym. When you have to warm up for at least a half hour, sometimes more sometimes less depending on how your RA is affecting you that particular day. With my diagnosis of my autoimmune disease was a flood of emotions. While there was relief that there is something real to treat, I had a feeling of tremendous loss of the person’s I was, the person I was trying to become, an Ironman. The diagnosis still couldnt erase the 6 previous years of complaints I’d made to my family, to my friends, to my trainer of I just can’t do that. I just can’t bend my knees that far. I just can’t unload the dishwasher in the morning. I just can’t open this jar, sometimes even just the milk jug. I can’t turn on the faucet in the bathroom, get toothpaste on my toothbrush. Please do it for me. I had become a whiner in their minds and the diagnosis was just too little too late. Diagnosis for me took several years, especially when my symptoms were not taken seriously. I even read up on joint pain and asked for extra test like a C-reactive protein test, only to not see the test on my blood work results. The doctor decided I didnt need it, only didnt tell me while in the office. I was made to feel by doctors, friends and family that the symptoms are all “in my head,” This made me uncertain about my own symptoms, questioning their knowledge about my own body and wondering if another visit to the doctor would just end up in frustration and another hit to my wallet. So many times I didnt go back when I should have. During this lengthy process, the disease continues to cause damage and wreak havoc on my joints, sometimes causing pain that can be debilitating and painful for my family. I’m grumpy, I snap at them, I don’t have patience for even myself, after all, Ive been told, numerous times, there is nothing wrong with me. I am left with a feeling of being alone with this illness. My family and friends are available and supportive initially or when there is a crisis, but that support fades over the long run. They get tired of helping and of the up and down days. Making it even more difficult is the fact that Rheumatoid Arthritis is a heterogeneous disease, meaning that others with RA may have symptoms that differ from mine. Also, mine may differ from mine, over time. The same medicine that works for me today may not tomorrow. My message to you all. Don’t give up! Keep on moving! I swear it’s helped my RA even though I get tons of unsolicited advice that I shouldnt be doing this with my RA, I try to strike a balance between my heart calling me and my doctors reigning me in as well as encouraging, me in many of my athletic endeavors.
Posted on: Wed, 05 Mar 2014 05:09:39 +0000
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