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RA is often called an "invisible disease" as many people show no outward symptoms. The internal reality is far different.
Rheumatoid Arthritis causes your body to attack itself - your joints, your internal organs, your eyes... before diagnosis, you wonder what on earth is happening to your body. Why your hands clench up and won't move, why your muscles are too weak to support your body, why you have to ask for help to open a bottle of milk or cut your scrambled eggs. Why your legs won't support you, why you are tired all the time when you used to be able to run circles around everyone else. Why your brain is fogged up and your once excellent memory starts failing you. Why some days your eyes won't focus.
And the pain. Constant, unrelenting pain. Making jokes about how on a pain scale of 1-10, you are usually somewhere between an 8 and a 15. Not knowing from day to day how much or if you will be able to function.
Trying to navigate a broken healthcare system. The Affordable Healthcare Act is coming, but not soon enough. Every day that RA is left untreated, irreversible damage is done. Trying to apply for Medicaid in a state that just slashed its Medicaid Budget by huge percentages... waiting... still waiting.
Finally getting into a clinic that will let you pay a small portion of the bill each time, but doctors and medications still cost $500 - $600 out of pocket each month, and that is not even with being treated by a Rheumatologist.
Happy to start some kind of treatment - one that necessarily consists of toxic medications with nasty side effects - with the awareness that it could take months for these medications to work and months of adjusting "drug cocktails." Still living a life without knowing what abilities each day will or will not allow.
Meanwhile, rent and bills keep coming. Applying for a traditional job is out of the question when you can not promise you'll be able to fulfill your job duties.
Trying to stay self-employed as a graphic and web-designer, trying to get work done amidst the pain and the fatigue.
Everything a juggling act... if I do this, will I have the energy left to do the other things I need to do? What bills do I try to pay? Realizing I may soon have to choose between a roof over my head or continuing treatment.
Trying to stay positive, but depression is part of the deal. Stress makes it all worse.
And here's the kicker... onset of RA is often caused by a "trigger factor" - an illness, a traumatic incident. Looking back over all the medical mysteries of the last seven years that have culminated in this diagnosis, Hurricane Katrina screams out "I was your trigger." Thanks Katrina, you are the gift that keeps on giving.
I do not like to ask for help, I have always been the one to help others. Now I need to ask, I can not do this alone anymore. I do not want to apply for disability, though I have been advised to (However, you can not work for 12 months in order to be eligible. How, I ask, is one supposed to survive without working for 12 months?) Still, I believe in taking care of myself, as rough as treatment is proving to be I have to stick with it. But I am very scared now, I fear the loss of my business, I fear ending up homeless.
There are many people in need and times are rough for all. If you can find it in your heart and spare just a little bit out of your pocket, it would be the greatest blessing. I need to buy some time to allow these treatments to work.
I want to be the person who helps others again.
I thank you for listening.
P.S. There are many articles about Rheumatoid Arthritis online that will give you a good idea of what life is like with this disease.
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