Being sick. . .with Lupus

I am often asked, how did I know something was wrong? What are the symptoms of Lupus? So I thought I would put it in writing. From my recollection, I started to notice things last November (2008) but at the time I thought I was having extreme seasonal depression issues. What do I mean? I literally could not get out of bed. I was sleeping 11 or 12 hours every day and I felt terrible. I thought it was because I was sleeping too much and I really kept beating myself up about it. Also, around this same time my wrists started to hurt. At first I thought it was the new bikes at the gym and the change in my office space. I thought I had carpel tunnel and looked on Web MD. After following my symptoms for a few weeks, I realized I didn’t have carpel tunnel as the pain was in the wrong place. You ask, what pain? I literally couldn’t hold a pitcher of water of a coffee pot. Holding a coffee cup was possible, but difficult. So it was not just pain, but weakness too.

Since I hadn’t been feeling well my usually daily exercise was limited to maybe every other day. I started to have pains in my arms and shoulders and was extremely tight all over and figured it had something to do with lack of exercise or sleeping wrong or the cold weather. I kept thinking, I turned 40 and now everything hurts, old age sucks! My legs and feet hurt at times too, but I blew that off thinking I was “sore” from exercising less. So by mid December I was exhausted, depressed, my arms, shoulders and wrists hurt and I often was “sore”, like exercise sore . . . but all the time.

In mid December I had this weird arm pain that I had once before in the previous summer. It was a pain in my upper arm that I could not pinpoint where it was coming from, but had a hard time lifting my arm over my shoulder. My weekly swim became difficult and one day I had to wait it out in the hot tub while my sister swam. I went xc skiing and couldn't pole at all (pain and weakness in my arms persisted).

It was about this time when I noticed my hands becoming arthritic. They have been cold for years now and I walk with huge ski gloves all the time but this time the morning arthritis was terrible. I thought again, that I was just getting old and getting arthritis. I also noticed my throat and jaw hurting and thought I was getting a winter cold.

By Christmas all of these things were going on at once. The morning had gotten steadily worse and I could barely get out of bed. My arms felt like “dead weight” in the a.m. and I would have to sort of lift them up and use only my core to get out of bed. I would notice the pain steadily decreasing during the day and then around 6 or 7 at night starting up again. Between Christmas and New Years things seemed to really get worse. My hands became so arthritic I could not open the toothpaste or hold my toothbrush. I had to hold a coffee cup with two hands. I could barely walk the dog because I couldn’t hold the leash. I couldn’t bend any fingers in the morning, at all.

I was working that week and I usually get a lot done in the office as there are few phone calls and I find it a great time to work on a project. But typing had become difficult too as I had to hold my hands funny to type without pain. I also had a hard time gripping a pen or pencil. I noticed my concentration being off as I kept fidgeting with my hands and wrists to try and get comfortable. I was taking a lot of ibuprofen which sort of helped, but not a whole lot.

It was at this time that I noticed my jaw pain was consistent. My sore throat never turned into a cold and my jaw continued to get worse. I couldn’t justify this pain related to exercise and ignored it at first. It was when I went to bite into an apple one afternoon and could not open my mouth wide enough that I realized that there was something seriously wrong with me. I realized then that my pain was systemic, it was literally everywhere.

During November and December I was still doing everything and I didn’t tell many people about it because it seemed like such strange random pains and I still didn’t really consider that anything was wrong. I would get up an extra hour early take 600 mg of ibuprofen and wait to see if I could get my arms and hands working before I went running or to spin class.

New Years Eve I see as the apex of it all and it was when I really knew something was wrong. Since I usually would go to bed by 10:00, staying up until midnight brought stiffness and pain I hadn’t felt before. I didn’t want to alarm anyone and continued to play games and socialize but in my head was counting every minute until we could go home and I could lay down and go to sleep and try to pretend the pain wasn’t there. I was so uncomfortable EVERYWHERE it created a pain that is really indescribable. It wasn’t a yell out loud “ouch”, but a constant allover and everywhere total uncomfortableness.

In addition I had two incidences where my fingers just “went to sleep” for no reason. They literally lost all feeling and turned BLUE! Eventually it went away. I later found out that this is called Reynaud’s Syndrome.

I remember seeing my sister at a morning spin class and she touched and squeezed my hand to say “hey” and I screamed in pain at her to not touch me (not nicely) and the look on her face was complete fear, she knew then that something was really wrong.

On January 2, which was a Friday I called the doctor first thing and they were closed. I called on Monday and for an unexplainable reason waited until the following Monday to actually go in to see my doctor. Again I spent the week as usual; meeting friends at 6:30 to run in the snow, going to spin class, driving to meetings, all uncomfortably, but now an uncomfortableness that I was accustomed too. Coming home from Alpena (2 hours away) that week was hard. My body ached and driving was miserable.

The Sunday before my doctor’s appointment I went skiing with by brother’s family. I didn’t want to go as I wasn’t feeling well but they convinced to come out since we had free ski tickets for the day. I ended up going, knowing if I can walk I can ski. So I did. Getting my boots on was hard, as I said the pain and weakness was the worst in my hands, wrists and arms. But I struggled through it and went skiing and tried to have fun. (I always wondered if people noticed I was not well.) When I went to take my boots off, I didn’t think I could. I was hiding behind the car hoping no one noticed that I couldn’t but also hoping someone would so they would help me. I couldn’t believe I couldn’t get them off. I finally did but struggling, kicking, and pushing through the pain and the tears. I just couldn’t imagine having to ask for help to take my boots off. . . I have been doing that since I was three years old and a lesson my father taught all of us Meyerson kids was if you get the priviledge to ski you have to learn to take care of your equipment. The tears that shed that day in the Boyne Mountain parking lot reminded me of being a kid and struggling over the same thing in the same place, but as an adult it was really hard to justify . . . .