Journey to a Diagnosis in 2009

August 21, 2016

I went to massage therapy school and soon after graduating I opened my own office. Day by day it was getting harder and harder to maneuver bodies around on the table. I was exhausted after just giving 1 massage. I decided to shut down my office and work at CVS as a pharmacy technician. Worked there for 3 years and got my state license and my national certification. I loved going to work everyday and I loved my customers. I can't wait to get back there and be a productive member of society again. 


As the years progressed so did my disease. Only the doctors local to me in CT could not figure out why I was so exhausted. A rheumatologist started me on prednisone. She knew I had an autoimmune disease but because I wasn't presenting with a disease identifying factor (like a lupus rash, or joint pain for RA) she didn't know how to treat. Taking prednisone was like popping candy. It did nothing for me. As did plaquinel, methotrexate, humira... you name it, I've taken it. 


I was exhausted. I was in pain. My joints hurt, my lungs hurt, my skin hurt. I would work 4 days a week. 6 hours a day. I woke up at 10am went to work. Got out at 4 and was back in bed by 4:15. My husband was home with my daughter alone every night. 


A year went by and I had gone to 2 specialists in every field. Rheumatology, cardiology, pulmonary, neurology. Guess what I passed all tests! No one could figure anything out but all agreed autoimmune. So regular visits to the rheumatologist it was. Our frustration level was starting to rise. We were actually begging for a diagnosis. It was like "yay doc that's what's wrong!" I kept thinking what is wrong with me wishing for an answer . It felt parallel to almost wishing for a disease. 


We started with mild medications and tapered up to stronger when those didn't work. Finally we are at the toxic levels where we have to weigh the risks and benefits, Methotrexate and Humira. 3 months of injections (done myself) of these meds that are not helping and doing God knows what to my organs...I go to an appt. Which happened to be my last with this particular rheumatologist. I went because my knee is swollen twice it's size from fluid. As she has a needle in me draining the fluid she says "have you thought about a psychiatrist? This seems to be all in your head" Are you kidding me lady?!?! The medications you have me on and you think it's psychological?


Now at this point I am at a loss. I am depressed. I have no doctor to advocate for me. Just a doctor that puts up with me it seemed. A patient of mine at CVS tells me about her doctor, but he's up in Boston. I don't care. I make an appointment immediately. 


April 2009 I drove to Boston to meet a new rheumatologist. I had done my research and he was ranked one of the top in the country. He had lead clinical trials which resulted in stopping the effects and in some cases reversing damage done by autoimmune diseases. He had won many awards. His credentials went on and on. I was very optimistic. 


I went into the office. The staff was amazingly nice. I wasn't an inconvenience. I wasn't invisible. I was me. And the receptionist wanted to know if it was a good day for me or a bad day for me. I was 45 minutes early because we had anticipated traffic. We didn't mind waiting. But we never did! The doctor came right out. "you came from CT" the doctor says "let's get you back on the road". 


I settle into the exam room and he looks right at me and says your ANA tilter is 1:164 (normal person is 1:2, 1:30 starts the autoimmune range. It just means you have anti nuclear antibodies. It should take a few tries to dilute them in a healthy person so they wont be a bother. My # meant it took 164 times) The doctor took one look at me and says "you have rheumatoid arthritis". Talk about your mixed feelings!! I was so elated! Finally a diagnosis! A doctor that validates that I can't tie my shoes some days, that I can barely do stairs! I cried I was so happy. So relieved! Then it settled in. The doctor was talking to me. Somewhere between the words treatment plan, and no cure, I realized I was sick. Really really sick. 


My cousin has lupus so I knew about autoimmune diseases. I was aware of the damaging medications from her and from school. 10 years later and her organs are shutting down. Fear set in. I have a husband. I have a 5 year old. I'm only 33! 


So the plan was regular visits. Methotrexate (type of chemo that kills cells, pill form), Humira (low scale biologic that rebuilds cells, 1 shot in leg or stomach once a week), Celebrex (anti inflammatory) , and Tramadol (a pain killer). And a visit to a cardiologist up there to deal with my high blood pressure. 


Thus beginning my journey to fight Rheumatoid Arthritis.


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