Monday, June 6, 2011

So it begins

I want my story out there. I know support groups for this are hard to come by. I want to help anyone I can.

My story part 1 here goes nothing.

I went to massage therapy school and opened my own office a few years ago. 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. That was 2 years ago.

I'm going to stop my story right there because it's late and I'd like to go to bed. I will continue this story for you soon.


  1. Your story like all our stories need to be told loud and clear. This is a tough disease to deal with and having doctors tell us it is in our heads just makes me want to strangle them!!! Tell it girl! Tell it loud and clear! You are not alone in this and maybe together we can make a difference in the medical community. I am just so disgusted with rheumatologists of late. The more I hear, read and encounter...the angrier I become. What are they teaching in the medical schools that they come out so cold and with such lack of empathy and compassion? It just frightens me that doctors feel if they can't write a prescription to fix it, they throw their hands up in the air and then blame us! What give with this? It is just wrong! Plain wrong! Hang in there and keep writing....our stories need to be told.

  2. Thanks Deb! Just wait for part 2! My Rheumy rocks! Thanks for your support!