Fighting through pain

Three months after I was given my official diagnosis, I got my first lesson in what happens if you don't give your body rest.

I had a busy weekend ahead. I was moving from a small apartment to a nice, roomy townhouse and then I was leaving on a backpacking trip in the mountains with some friends. I have a hard time asking for help and since I had to get everything moved out before Saturday morning, I knew I couldn't ask anyone to take off work to help me move. At the time, I didn't have a lot of stuff anyway so I didn't think it would be that hard to do it by myself.

After hours of moving stuff, I was exhausted. What was I thinking? How in the world am I going to go backpacking when I feel this tired and achy?

I got up anyway and headed for the mountains with my friends. I remember how much I loved being in this amazing place, it was so cold at one point it was snowing on us, but I still loved it. Everything went great until it was time to sleep. With all the walking we were doing, I had flares in my hip joints. When I move a lot, I don't notice the hip flares as much as if I have flares in my knee's or feet but when I am trying to go to sleep.... it's excruciating. There is no comfortable position when I have flares in my hips. Add an extremely hard ground and that means no sleep.

My body was done. It was time to go home and rest, which I did do but not until we got one more night in. I don't remember this night being as bad but I learned a valuable lesson that weekend. If I want to feel good, I have to give my body what it needs - rest.

Now I can tell when I have pushed it too hard and not slept enough.

Figuring out medications

Finding the right medication is always tricky. It's not a great feeling to hear on the news that the drug you are taking is being taken off the market because of health problems caused by it. That's what happened with Plaquenil. Fortunately, I was only on it for a short period of time. The next drug I was put on was called Methotrexate, a very popular medication for Rheumatoid Arthritis. I also started an injection, VERY expensive, medication called Enbrel. The Methotrexate gave me bad canker sores in my mouth and so I then was put on prescription dose Folic Acid. And just in case those drugs didn't work, I had Naproxin on the side (basically a strong Ibuprofin).

I've never liked taking medication. I had to have one doozy of a headache to take anything for it, so my body was definitely a stranger to medicine of any kind. It was quite the adjustment for me to get used to taking something every day - an adjustment mentally more than anything.

My body reacted well to these medications and I started feeling better. Although I don't like taking medications, I'm so grateful they are there to take. What would I be like otherwise?

The End of Cute Shoes?

I love shoes. I could spend hours just trying on different shoes. I particularly like brown shoes with the big chunky heel. On Saturday I had to dress nice for a special occasion and wore some particularly favorite shoes of mine that I hadn't worn for a while. After walking a block in these shoes my feet started hurting and by the end of the day, they ached like I'd just run a marathon. My feet have been hit hard by my arthritis. There are days when I get out of bed and can barely walk, I literally feel like I'm 80 years old. I think I try to block out what is happening to my feet because it scares me more than anything. If my feet get really bad than I won't be able to walk anymore and I don't like to think about how my quality of life would change if that were to happen. Anyway, after Saturday's attempt to wear cute shoes didn't go well - it kind of woke me up to the reality that I need to make sure my feet have the most comfortable shoes to wear. Today I am cleaning out my closet and getting rid of all my cute but extremely uncomfortable shoes! My feet deserve better than that. I'm sure there are cute shoes out there that are also comfortable, I just need to spend some time and find them.

Doctor Visits

My first appointment with the rheumatologist was nothing exciting. I remember having to bend my joints so he could see if there was anything wrong with them and he felt the joints that were having the most problems. He said that he didn't feel any swelling and until that did happen he couldn't give me an actual diagnosis. So, the result was just wait and see. He also started me on a drug called Plaquenil.

A month later I went back and this time my joints were swelling. He said something to the affect of, "I sure hate to see this happen." It was all I could do to not burst into tears right in front of him, but as soon as I left I cried my eyes out. It's a horrible feeling when you find out your body has betrayed you, that your own immune system is so out of whack it is attacking itself. It doesn't make any sense. I remember just wanting to be alone and I went on one of my favorite hiking trails. I was so angry that I pretty much ran the trail (and I'm definitely NOT a runner) until I got all of my frustration out. Then I had to start thinking rationally and try to not let this disease get me down.

Some of my story...

Here I am blogging about my life with Rheumatoid Arthritis... Why am I doing this? I know I am not the only person that suffers from this disease - there are approximately 1.3 million Americans who also suffer from it - but sometimes I feel like I am all alone. So, I am blogging about my story. I hope to write any time something of significance occurs but first I need to write about the past. Maybe there will be someone who reads this that is going through similar things and we can relate and help each other.

In the year 2000, I was 25 years old and I was just finishing up my quest to get my Bachelors degree. I had just moved to New Hampshire for the summer to complete an internship. I only bring this occasion up because this is where the first sign occurred that there was something wrong. My eyes were so unbelievably dry that I spent a lot of time with my eyes closed because I couldn't stand the way they felt. I thought it was a problem with my contacts, so when I returned home I immediately set up an appointment with the eye doctor to see what could be done. I had Lasik eye surgery done and that seemed to resolve most of the dry eye problem.

Around this time (February/March 2001) I was taking an Irish Step Dancing class and halfway through the class my feet and ankles were in so much pain that I could no longer continue with the class. (I was really sad about this since this kind of dancing is a blast!) My wrists were also causing me a lot of problems and I kept them wrapped in ace bandages most of the time so I could function. I thought the pain in my wrists was from years of sitting on the floor with my hands behind me for support and my wrists taking on most of my upper body weight.

You can "see" that up to this point I always had excuses as to why my body was hurting, but when the pain spread to the bigger joints - my shoulders, hips and knee's - I could no longer explain it away and I started to get scared. I kept waiting for it to go away. I thought all I needed was a good night's sleep or less stress in my life and I would feel normal again, but on the rare occasion that those things did come around the pain still did not go away. I remember spending many nights sitting on the edge of the couch, rocking back and forth and praying to God for help, wondering why my body was letting me down like it was.

Finally, one morning I woke up with severe pain in my shoulders again. I got in the shower and because I couldn't lift my arms without wanting to scream, it took me a half hour just to wash my hair and putting a bra on after the shower was almost impossible.

I broke down. I couldn't do it anymore. I had to know what was going on.

I asked my roommate to take me to the hospital. With arthritis, after you start moving the joints they tend to start to feel better so by the time I was in the Emergency Room waiting for blood to be drawn, I was feeling better physically but was feeling pretty foolish emotionally. Who goes to the Emergency Room because of arthritis? I believe one of the nurses even said "we don't normally get people in here because of arthritis", which didn't offend me, I just didn't know what else to do at this point. I'd been healthy all my life, this kind of thing didn't happen in my family - I didn't know where else to go.

The results of my visit to the ER were blood results that showed I had a very high rheumatoid factor and a doctor to contact for help. Plus some pain medication, which was only a temporary fix. BUT, I was making progress - I was finally on my way to getting some answers.

Next Post.... Doctor Visits.