Fat to Thin With Fibromyalgia and JRA

Hi, my name is Hilary and I live in Michigan and am 20 years old. At age 8 I was diagnosed with Juvenile Rheumatoid Arthritis which is different than regular RA in that my internal organs swell as well as my joints, I was also diagnosed with Fibromyalgia at age 12. I’ve been to all kinds of doctors and treatments some good some otherwise, and have had moments where I feel like giving up, but I know that there are kids who can’t walk or breath on their own and so I am grateful that I can.

I attend Wayne State University and am majoring in mortuary science, which means I will be a funeral director and embalmer when done. I chose this field early on in life after helping my mom take care of her parents and aunt and uncle until their deaths. Spending so much time in the funeral home made me realize that I handled death well and that to help others cope was my calling. However, after working in the industry for 3 years I have realized that I don’t enjoy sitting behind a desk and that I feel bad taking money from people when they are sad. This led me to anthropology (studying people and culture), which led to physical anthropology ( studying the skeleton), which took me to medical anthropology (epidemeology of disease in culture), and finally forensic anthropology ( determining cause of death using the skeleton). I chose to continue studying mortuary science first though so that I could have a job while going through ALL the anthropology classes I will need to get a phD, which could take awhile.

As I said I work for a funeral home, basically doing office work, but I also teach cake decorating. I needed a creative outlet and so I took a couple classes and loved it! My teacher asked me to go through the process of becomeing an instructor and so I did. I don’t do anything like you see on the Food Network, but my students are happy to learn what I know, and every once in awhile a friend or relative will ask me to make a cake for them. Cake decorating was my solution to the boring desk job, I get to be creative and work with my hands.

By now you may be wondering what you could possibly learn from a 20 year old who is all over the map with her education, career, and hobby, but I assure you that this is not my whole story, and that it would take hours for me to tell you the entire thing, but here’s a brief synopsis. I was diagnosed with JRA and later with Fibromyalgia. I was an honor student, volunteer and all those other good things. Then I got married at age 18. Two  months into my marriage we were living with my parents and my husband found loaded guns, a to do list with ‘kill family’, and evidence of child sexual abuse in my fathers room. Needless to say it was a messy divorce for my mom and since he had not yet physically harmed either of us no restaining orders could be filed. Then my husband started acting strange and would flat out disappear. This caused me panic attatcks and landed me in the psych ward for a weekend. Then one night a police officer came to the door in the middle of the night to tell me my husband was in ICU with a heroin overdose. He had died and been resucitated twice and was on a ventilator. At the hospital I met his pregnant girlfriend. She was 25 and had no high school diploma, could barely read, was not attractive, and was a ‘recovering’ heroin addict, but she was a lot skinnier than me. I stayed with my husband till he was off the ventilator and then he asked for a divorce. After a few months he apologized to me and told me how stupid he had been, the hurt is still there but I am able to be friends with him. As if this wasn’t enough my mom has had scleroderma (an autoimmune disorder of the connective tissue which hardens the skin and internal organs) and pulmonary arterial hypertension and last time this year the doctors told her there was nothing else they could do for her and she had 6 months to a year. Neither of would accept that and so we went to U of M where they put a port in her chest that delivers medicine directly to her lungs 24 hours a day. The catch is that I had to mix the medicine every day and that the pack weighs a good amount. Within the last year I had to take her back to the ER almost every month due to the side effects. Then in July I almost lost her foe good, she could no longer dress or feed herself and I’m an only child with no one willing to help me. I took her back to the ER again and did not expect her to come home, but a resident noticed her itching and looked at her blood work. She had an adrenal deficiency which was what was causing most of the problems. Now I have her home again and she can run circles around me, literally.

So if you think you can’t learn anything from a 20 year old don’t read this blog. But if your open minded you may learn about funerals, cake decorating, anthropology, diseases and conditions you’ve never heard of, divorce, caregiving, and ultimatly surviving. Through all this stress and medication I put on a lot of weight. I need to lose weight for my health, but also for the satisfaction of knowing that the bimbo my husband chose no longer had anything better than me, because I will be skinny, smart, and successful and she’ll just be skinny and stupid.