Living with a chronic illness with dignity and laughter
This is my 2nd chronic illness. The 2nd invisible illness the first one is Panic Disorder which I got on my 20th year of life and did not find help until I was 41. It was the 1970’s when it started and it took me 6 years to find some help and a diagnosis and until I was 41 to get a medication that helped me live a semblance of normal life but never the same. My second illness RA though I prefer to call it Rheumatoid Disease as the word Arthritis confuses people into the wrong assumptions. It was in 2009 I had a slight infection in a finger some cellulitis for which I got antibiotics and felt better one week later my life was changed forever I woke up hardly unable to get up from bed hurting and it only became worse trouble walking, unable to hold a coffee cup or cut my meat, comb hair etc. each of us has lived this nightmare. I was living with a friend who also suffered a chronic incurable illness. He helped me during this terrifying time where I imagined I would end up bedridden in a nursing home at the age of 46. I went to a rheumatologist who did all kinds of tests and at the end let me know I had seronegative Rheumatoid Arthritis to say I was devastated by this news. He is a wonderful doctor who allows me to talk ask questions and express my fears. He started me right away on Plaquenil and Methotrexate for about a year then onto Remicade infusions and gradually adding more and more medication, where before I only took medication for the Panic disorder and Hypertension 2 now I have 2 drawers of medication one for the morning doses and one for nighttime, I try to keep my humor about it and tell people my nightstand looks like a pharmacy. My roommate passed away in 2014 but he left me with a valuable lesson about dealing with a chronic illness with dignity and laughter, I had helped to take care of him years before I got RD and from watching him and how he handled his illness, he had Hypogammaglobuliemia which essentially left him with no immunity from any illness, it’s a congenital illness which he had as a little boy it went dormant and then reappeared in his 30’s and he fought it aggressively and I took his example in fighting my battles with RD that even though I am losing my hair and my teeth are starting to crumble and fall out, if I can stay upright out of a wheelchair and keep my hands and feet from deforming it’s a win. I am 63 now and work from home doing Medical Coding online and it’s not easy with the fatigue, brain fog and pain but I am alone and need the money so I find ways to work around, resting and pain medication. I started going to a Pain Specialist 2 years ago and while the pain never truly goes away the medication allows me to function. The hardest thing about this illness is the loss of self and coming to terms and acceptance of things you longer can do. On the days I feel good I over do and pay the price for 3-4 days afterwards. I’ve learned the hard way to pace myself. Also the first thing I did after the diagnosis was to begin educating myself, I read everything I could about RA, joined groups on FB and got newsletters from places like WebMD and the Mayo Clinic it’s important to be proactive and be informed and work with your doctor if the one you have doesn’t listen to your concerns find a new one this is your life and only you know what is going on with your health. One of the best things from the groups is finding others who know what you’re going through and will listen.
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