what's the point?

It's been a year since I've officially been diagnosed with lupus. I wish I could say that everything is great now but that wouldn’t be true. Things are a lot better than there were last November but worse than they were 3 months ago. When I first was given the diagnoses I fought the drugs. I’ve taken the steroids before and I don’t like the side effects. But after 3 months of 3600 milligrams of ibuprofen and still constant pain I gave up and started to take the steroids (40 mg) in a very high dose. I took that dose for almost 6 months before I switched doctors. (A much needed decision for my sanity). My new doctor is much better, shorter wait times, easily accessible and close to work. She also understood my dislike for the steroids and has been working with me to find alternative medications that will control the pain but will allow me to stop taking the steroids. She has been backing me down to 15mg now with the hope of soon dropping down to 10mg and then maybe off them all together. Great news right?? It’s what I’ve wanted from the first day I started taking these awful drugs. It turns out not so great. Since I’ve been down to 15mg of steroids the pain has come back. I’ve noticed an increase in joint swelling, muscle pains and aches, inability to sleep through the night and an overall lack of energy. I have trouble falling asleep, when I do fall asleep I can sleep for10-12 hours yet I wake up feel exhausted and I often have trouble waking up. Today I parked at the end of the parking lot because it’s the holidays and there’s no parking near the front of the store. Yet as I hobbled to the store I found myself thinking I need a handicap parking permit because I can’t walk. I’m 27 years old, I shouldn’t need a handicap permit, I’m not disabled. What’s wrong with me? Yet all the same I wish I had the stupid permit so I wouldn’t have to hobble across the parking lot.


It seems the solution is to up the dose of the steroids again. But then I’m stuck with the side effects. Extended taking of steroids can among other things increase the risk of Osteoporosis. The doctor has also up some of the other drugs to allow me to lower the steroids dosage. The side affect of one of the new drugs includes nausea. So in addition to my daily pain I also usually experience decent amounts of Nassau in the mornings. (If this is anything like what pregnant women experience as a part of morning sickness it’s yet another reason why I’m not having kids). All of this leaves me wondering what the point is. The medicines help but the side effects suck. But nothing is a real fix. I’m either screwing up my body with all the drugs or I’m living in pretty much constant pain.

I’ve also found that in the last few weeks I’ve become a less pleasant person. I’m tired, easily irritable, and generally unpleasant to be around. I don’t want to be around people and when I am I really just want to smack most of them. (Great company right). But since I can feel my personality changing and I don’t like it I find myself looking for a way to change it. So I’ve come up with what I believe will be a workable solution. I’m going to run the San Francisco Marathon at the end of July. I mean training for a Marathon in painful enough by itself but you add to it training to run in the hills of San Francisco and that’s got to inflict incredible amounts of pain of one’s body right? I figure that if I’m going to be in pain all the time it might as well be for a good reason. And if I hurt from training for the Marathon maybe I’ll forget the pain is from the lupus instead. OR at least I won’t be able to tell which one is the true cause of the pain. Of course all the medical websites say running (especially a marathon) is one of the worst types of exercise for people with lupus but when have I ever actually followed a doctor’s advice. At least when I cross the finish line in San Francisco it will be worth the hurt. As opposed to now, when there isn’t a good reason for the hurt.

Of course because I’m not a total idiot I’m waiting to officially sign up for the marathon until I get clearance from my doctor, who I don’t see again until the middle of January. But just because I don’t see her until then doesn’t mean I can’t start training now. I should be able to get in a good month of training by the time I visit her so I’ll have a realistic idea of what the pain will be like. Another reason to run the marathon is that I’ve always wanted to go to San Francisco. So hopefully you’ll see me in San Francisco in July and it will be as I cross the finish line of the marathon having run 26.2 miles through the hills of the city by the bay. At that point I’ve have a real reason to hurt.