Thursday, June 23, 2011


Oi. Here I am, just about a month after my last post. I seriously need to get better about posting more frequently if this blog is going to go anywhere. I'll put that on my long laundry list of things to do. Before I get too far into this entry though, I think I need to go back to the beginning. The beginning of my life with RA that is.

In the spring of 2006 I had to make one of the hardest and most devastating decisions of my 22 year old life. I chose to leave school and the only career path that I had ever known. From the time that I was little I had wanted to design clothes. Therefore, I ended up at Iowa State as a Textiles and Clothing major. A lot of things about TC classes came easily to me. Learning about fabrics and altering patterns are two examples. I didn't have to try very hard to be good at those things. Time management, however, was one of my biggest downfalls. I would wait until the last minute to start something, thinking that I could get it done in time. That didn't work out too well for me. I also realized that I didn't quite have the right mentality or drive to actually be in the fashion industry.

I was so incredibly lost and unsure of where I wanted to go next. I decided to basically run from my problem. Not only did I leave Iowa State, I actually left the entire state of Iowa and moved to northern Michigan to be with my long distance boyfriend at the time. We had met online and he was an amazing guy. He was funny, kind, supportive, and nothing like any of the other boyfriends I had had up to that point. He came to Iowa in May. We packed my things in his car and were on our way.

When we got to his parents' house in the U.P. near Munising things were new and interesting at first. It was beautiful up there and his family and friends were super nice. It wasn't long though, before I began to miss my own family and friends. I would stay awake crying at night because I missed them so much.

Whoa, got caught up in the melodrama there for a couple of paragraphs.

Back to the point of this entry.

Toward the end of June my boyfriend and I took a trip back to Iowa to get some more of my things. On the day we left I was having a hard time getting dressed because of pain in my shoulders. When we finally got to my mom's house I went to get out of the car and couldn't believe how stiff and sore I was. The pain wasn't just in my shoulders any more, it was all over. At some point while we were in Ames I am sure that I cried because the pain was so intense. It was an emotional situation for me because I had never even broken a bone in my life and I had no idea what it was like to feel that kind of pain.

My mom is a nurse so she was worried about me. She had me see a doctor there before we headed back to the U.P. The doctor didn't tell me much, but while I was  there I did remember having pain and swelling in my toe back in April. Looking back I guess that I should have paid more attention at the time. Needless to say, even after we went back up north the pain hadn't gotten any better, and in fact, had gotten worse. In July, I went to see a doctor in Munising. He did blood tests and all those other fun things that doctors use to make their diagnoses.

Then came the news: I had Rheumatoid Arthritis. I didn't know anything about the disease, but what I was hearing did not make me happy. The doctor in Munising referred me to a rheumatologist in Marquette and I went to see her. She put me on most of the medications I am still on today, almost five years later.

My boyfriend was incredible during this time. He was patient, supportive, and was there to help me whenever I needed him (even though I hated asking). Unfortunately our relationship changed from a romantic love to more of a care giver/sick person kind of love. It was obvious that we cared for each other very deeply but I began to depend on him for things that weren't easy to deal with in a fairly new relationship.

By right after Thanksgiving I was back in Ames, living with my mom. It was another devastating loss for me at the time, but when I remember it now, I realize I made it harder then it had to be. I feel lucky to have had my ex and his family in my life for as long as I did. Being diagnosed was hard, but they were the light in what could have been, and at times what was a very dark time in my life. I can't even explain to them all how much they meant to me at the time and how much love I still have in my heart for all of them.

Yeesh. It's too early in the morning to be so emotional! Back to the facts.

Once I was back in Ames I got an amazing rheumatologist in Des Moines. Then mom and I moved to Des Moines a few months after that. While I was seeing this amazing Rheumy I started feeling better. She was the one who originally put me on Enbrel. I got to the point where I was almost back to normal (or about as close as I was ever going to get). Then I turned 25 and had to go off of my mom's insurance. Now I'm on a program called Iowa Cares. I go to a county hospital here in Des Moines. There aren't any rheumatologists there, which is why I had to go to the University of Iowa hospital last month. That was the first time since being on Iowa Cares that I've actually gotten to see one.

This brings us to the present day, which will be discussed in my next entry. My diagnosis story isn't that exciting, but I hope that anyone reading this sees how fast a diagnosis can happen. I'm one of the lucky ones who was diagnosed and started on medication early. I'm not quite sure where I'd be if I wasn't treated so quickly, but I am glad I don't have to find out!

1 comment:

  1. Your ra story needs to be told. Welcome to the blogging community! You will find that this family is also a warm, kind and supporting group.