You wake up in the morning with your usual routine of showering, getting dressed, and breakfast, never thinking of these steps or actions. But what would life be like if you had to think and plan each one of those actions out ahead of time? Most people live their lives without thinking of the potential consequences of what just those actions may cause, but when living with a chronic disease, these are things I have to think about and plan for every day. I currently live with an undiagnosed disease, though they have tossed the ideas of Rheumatoid Arthritis and Multiple Sclerosis around for the last 4 years, and I was even treated with immunosuppressive drugs for 2 years with no relief. But regardless of what the doctors want to call it, it is I who lives with it and its limitations.
Four years ago, I was a healthy (despite chronic back issues) 30-something woman and single mom of 3 running around and not thinking of anything more than what needed to be done that day. It all started with a pain in my left shoulder. I had been moving, and didn’t think much of it as I tend to be one that does more then I should anyway. Well, after about 2 weeks the pain in my left shoulder was replaced by pain in my right. Again, I figured I had just overcompensated with my right and no big deal. Unfortunately, I was wrong. Within one month, the pain and moved all the way down to my fingers and I was unable to move my arms without great pain and was also losing the ability to hold things in my hands without losing grip. It was at this point I decided to head in to my general practitioner. He examined me and was sure it was Rheumatoid Arthritis, so a referral to a rheumatologist and off I went.
So, my appointment to the rheumatologist finally came around, however, at this point the pain and loss of proper function had now spread into my legs as well. The doctor examined me and ran the full run of blood tests, and even though the test markers didn’t show Rheumatoid Arthritis, that was he believed it was and I was started on a treatment including 36 pills a day and a shot once a week. My symptoms never really got any better, and within six months of all this starting, I was now limited to what I could do with my arms and having to walk with forearm crutches as my legs were not stable. Within 6 months I had gone from a very active woman to moving and functioning as if I was 80. I was no longer able to work and I just wanted to find a cure…or at least answers. I wanted my life back; only I didn’t know how to get it.
Two years went by and the course of treatment just wasn’t doing anything. I had now developed loss of sensation in my feet and fingers, and had bouts with horrible crushing pain in my chest that sent me to the ER in fear of a heart attack. Numerous more tests were run, my heart seemed to be just fine, but there were no answers as to what was causing all that was going on. I felt helpless and just didn’t know where to turn.
Then, I lost my insurance, was unable to receive treatment any longer, and just had to tough it out. It was hard for a few months, but then as quick as it started, it seemed to calm down and get better. In this time, I also got pregnant, and that was in a way the best thing for me. Every symptom I had be hit with just disappeared…it was a wonderful 9 months. I was back to being active and able to exercise and walk again…I had found my old energy level and just figured the last few years had just been a bad dream. However, I was soon to be reminded that there was still something seriously wrong with my body.
My daughter turned 4 months old, and all my old symptoms returned with full force, only this time they brought friends to the party. I began having vision issues, severe cluster pain in my head, and my energy level dropped to nothing again. My nightmare had returned, only this time I had nowhere to turn. I currently have no insurance, and the free clinics can do nothing but treat my symptoms and tell me I need a neurologist. The general consensus now between the doctors that I have seen is that I probably have Multiple Sclerosis. I really don’t care what they want to call it as a name doesn’t matter. To me it has been nothing but a monster that has taken my life as I knew it away. A monster that has taken away my body and I just want the monster to go away.
I have learned to live with it as best I can, given the current circumstances. I can no longer work a regular job, as my body will not allow me to sit or stand for regular intervals. I have good days and bad, and seem to go through waves where it gets better and then worse. I wake up every morning having to think through my day and decided what I will have energy for and what will maybe just have to wait until tomorrow. I can no longer take for granted that I will be able to walk tomorrow, or that I will have energy to do certain things. It has greatly limited me in how I can live my life, but I decided long ago that I was not going to let it win. I may have this weird disease, but no matter what, I can’t let it have me.