Catch Up

So I sort of lied about when I'd be posting my update as to where I'm at these days with my RA. Oops! This is close enough, right? :)

At this moment I am STILL waiting to get my Enbrel. The rheumy gave me a script for it and I was so excited at the time. I figured I'd have to wait a few weeks but after three weeks of not hearing a word, I emailed the U of I. I got a call from the nurse saying that my county hospital is designated as my "home hospital" so they have to get the medication for me. "More red tape, oh goody," was the thought that was going through my head at the time. The nurse then told me that I would need to contact a social worker at the county hospital and have them help me to get the Enbrel. Before I go into that I want to go back a few months to before I saw the rheumatologist at the U.

The kicker about this whole Enbrel situation is that I had gotten it from the county hospital for over a year. Then I was sick with a respiratory problem for about three months, so I had to go off of it. When I started seeing a decent doctor at my hospital and he tried to put me back on Enbrel the hospital told me that I'd have to get it from the U of I because it required too much up keep (ie it was too expensive for them and they didn't want to pay for it.)

So back to the most recent developments...I tried a social worker at the hospital and they referred me to the patient advocate. I have been calling her at least once a week for the last two weeks. The last time I called her she told me that she was having to get the Chief Medical Officer involved because neither hospital wants to pay for it and they are fighting over who has to do it.

So UGH!!! Now I am in Enbrel limbo until one of them backs down. I am supremely not happy about this because I'm going to Dallas for Mary Kay Seminar the week after next. It makes me so nervous to go without the cushion of Enbrel. I got the nurse from the U to write a note and send it so that I can use a wheel chair while I am there, but I'm still nervous. I'm also thinking about getting a cane.

If anyone who happens to read this has any suggestions about plane travel with RA I would be very grateful! :)

30 Things

1. The illness I live with is:

 Rheumatoid Arthritis

2. I was diagnosed with it in the year:

2006 (Mid July)

3. But I had symptoms since:

Probably about mid March or April.

4. The biggest adjustment I’ve had to make is:

Not being able to go to Ames and see my best friend and sister when I want to, pacing myself more, and actually having to ask for help when I need it.

5. Most people assume:

That I am lazy, lying, or making a bigger deal about the pain then is necessary.

6. The hardest parts about mornings are:

Waking up in pain and not being able to move very fast because of the stiffness.

7. My favorite medical TV show is:

Grey’s Anatomy. I can’t help it, I love the melodrama!  ;)

8. A gadget I couldn’t live without is:

My medi planner, shower chair, laptop, and rolling desk chair.

9. The hardest parts about nights are:

Not being able to get into a comfortable position to sleep and not being able to keep my mind from racing.

10. Each day I take __ pills & vitamins. (No comments, please)

12 and a half pills, 7 vitamins along with two self administered shots once weekly when I can actually get the Enbrel, otherwise just one shot weekly.

11. Regarding alternative treatments I:

Have looked into some and realized that not only do I not have the money to pay for them, but also that I’d rather keep doing what I’m doing.

12. If I had to choose between an invisible illness or visible I would choose:

Hmmm… this is a hard one. I guess I would have to say invisible but they each have their own problems and benefits I suppose.

13. Regarding working and career:

A little scared about what the future holds for me but I’m trying to stay positive. I started my own Mary Kay business so I could at least have a little money coming in. Now I just have to be brave enough to get clients who are out of my comfort zone. (As in not related to me or friends of mine.)

14. People would be surprised to know:

I’ve always secretly wanted to be a singer, dancer, gymnast, or ice skater at one point in my life or another. Too bad I have never had the aptitude for any of these things.

15. The hardest thing to accept about my new reality has been:

That I have to be more careful to conserve my energy, am tired ALL the time, and have to have help doing everything from getting dressed to walking.

16. Something I never thought I could do with my illness that I did was:

Do almost 300 hours at an internship last summer.

17. The commercials about my illness:

Give me hope for the future and make me happy that people are learning more about the disease. They also frustrate me at times because people don’t see a complete picture of what living with RA is like but they think they do.

18. Something I really miss doing since I was diagnosed is:

Being able to get dressed on my own, actually having energy, waking up and not being in pain, being able to come and go whenever I want.

19. It was really hard to have to give up:

My freedom

20. A new hobby I have taken up since my diagnosis is:

Cross Stitch and being more crafty.

21. If I could have one day of feeling normal again I would:

Do everything that I normally can’t do.

22. My illness has taught me:

I am stronger emotionally than I’ve ever given myself credit for in the past. Also it has taught me to have patience with myself and others. Other things are how lucky I am to have such a wonderful family and best friend as well as how many of the little things in life I took for granted before I was sick. Lastly (for this short list anyway) I have learned how helpful pets can be when it comes to dealing with an illness that can make me feel pretty lonely at times.

23. Want to know a secret? One thing people say that gets under my skin is:

If you lose weight, you will be all better or you just have to stop being so lazy. Also, when people walk too fast for me to keep up and don’t slow down, even after I politely ask them to.

24. But I love it when people:

Slow down and walk with me without me having to ask, want to learn what they can about RA so that they can understand what I’m dealing with, and don’t make me feel guilty if I have to back out of plans last minute.

25. My favorite motto, scripture, quote that gets me through tough times is:

“Being challenged in life is inevitable. Being defeated is optional.” –Unknown

“For everything this disease has taken, something with greater value has been given – sometimes just a marker that points me in a new direction that I might not otherwise have traveled. So, sure, it may be one step forward and two steps back, but after a time with Parkinson’s, I’ve learned that what is important is making that one step count; always looking up.” – Michael J. Fox (Always Looking Up: The Adventures of an Incurable Optimist)

26. When someone is diagnosed I’d like to tell them:

Having RA can be hard, frustrating and depressing but staying open with friends, family, and doctors and trying to stay positive is important. Seek out support online as well as in person from those who have been dealing with the disease as it is helpful to have someone who understands what you’re going through.

27. Something that has surprised me about living with an illness is:

Having any chronic illness is more complicated than it seems as well as more frustrating than I could have ever imagined. I’ve also learned how important it is to learn everything I can about my disease process and be an advocate for myself.

28. The nicest thing someone did for me when I wasn’t feeling well was:

For my birthday a few years ago my mom and sister gave me a pen which was hand made from stone by a man suffering from arthritis. They made sure it included a soft grip and was thick enough that it would be easier for me to write with even when my hands were sore. The thoughtfulness that they put into the gift made me cry.

29. I’m involved with Invisible Illness Week because:

I will hopefully be involved this year because I feel it’s important to shine a light on invisible illness and also learn what I can do to help myself and others.

30. The fact that you read this list makes me feel:

That you’re probably really bored (just kidding)! Actually that maybe people are interested in learning more about what it’s like to have a debilitating invisible illness and/or how to cope with having one.

Background

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!

Oh How Things Have Changed!

It's been almost exactly a year since my last post. I suppose that shows how good I am at keeping up on things like this.

A year ago I was starting one of the busiest, most rewarding summers of my life. Now I am in Iowa City making my first visit to the rheumatologist at the U of I. My existence is so very different now from what it was back then. Then I was feeling well (most of the time) and learning many new things at my internship. I was in a great place. Now I am fresh off of my one and only semester at Grand View, having been suspended for not earning a high enough grade point average. I am in pain (most of the time), don't know where I am headed next, and most things in my life seem to be up in the air. It's a lot harder to stay optimistic these days.

Not everything in my life at the moment is depressing though. I signed up within the last month to be a Mary Kay consultant (although I haven't done much with it yet) and I have friends and family that love me very much. I guess I just miss those relatively pain free days. My greatest hope at the moment is that the rheumatologist puts me back on Enbrel tomorrow. When I was on that, my pain was much more under control.

First Entry

I wrote this early this morning and thought I'd post it as my first entry.

Here I am at 2:45 AM laying in my bed, looking at RA blogs. It seems odd considering that two hours ago I could barely stay awake when I was trying to read something else. Not to mention the fact that I only got 2 or 3 hours of sleep last night because I was nervous about starting my summer internship. Tonight (or this morning) I’ll be lucky if I can sneak in 4 ½ hours before I have to get up to get ready. It’s not that I am not tired either… for some reason I started looking at RA blogs and it was sort of like an addiction. Each blog had links to other blogs and it just snowballed into me still being awake at 2:45 AM. I am going to have a rough 5 hours today I think.

Anyway, I was looking at all the blogs and thinking about this blog. I set up this blog account because I thought that by some amazing miracle or something people might actually want to hear what I have to say about having RA. I wasn’t sure where to start and that’s a lot of the reason that I haven’t written an entry yet. I thought about starting with how I was diagnosed, my background, and/or something similar to that. As I was looking at these other blogs I started to think “Why would anyone want to read my story? What makes it so special? How are people going to react to my mostly optimistic thoughts on the subject of RA?”

I’ve come to the conclusion that I need to start this blog for ME and no one else. So what if I am Suzy Sunshine most of the time? Does that make my feelings any less valid than those of someone who is a Debby Downer? I don’t think so. Don’t get me wrong, I am not saying that my entries are going to be all happy, happy, joy, joy. I have worried times and angry times and frustrated times just like everyone else does. The thing is, I am a very introspective and reflective person.  I believe that every experience is a learning experience no matter how bad it is while I am going through it. That does nothing to diminish the suckfest that is Rheumatoid Arthritis, but I have learned a lot about who I am from dealing with this annoying and painful disease. Coming from a place where I had no idea who I was as a person or what I was capable of, that means a lot. So, no matter how much I hate RA I will always be just a little grateful to it for teaching me what is important in my life. Anyone who wants to look down on me or belittle me because of that can (as they used to say) go suck an egg. I will not apologize for looking at the glass half full, just as I would not expect anyone else to apologize for looking at it half empty.