Coming back for another update on my dealings with Dermatomyositis, this time, oddly, I'm here to share great news. For the first time, in a long time, things are looking up for me.
Just as recently as just three weeks ago, I had a very bad respiratory episode. See, my disease has made waste of my lungs, leaving me with less than half of normal lung functionality. What that means is that anything as simple as a regular cold can knock me down. About three weeks ago one of my little ones came home with a cold. Knowing my condition I should have take precautions to avoid catching it myself... but I didn't, so I caught it. At the beginning it just felt like a regular cold. I had a mild fever for less than a day, and then the symptoms left. But... a slight cough remained. For those of you who know my stories, you know what coughs mean for me. A few days passed, the cough persisted, getting worse, and worse. Then I was getting short of breath all the time. At some point it got so bad I didn't feel like getting out of bed because I had no energy to do anything.
Tuesday, October 19, 2010
Thursday, August 19, 2010
Like being shot...
I haven't posted in a while... the last few months have been a little rough, physically, mentally, and psychologically. Many times I wished to be over with it and just be dead already. My body aching all the time. Out of breath all the time. Gaining weight uncontrollably. And to top it all, meds are making a wreck of me. I can't concentrate, I can't sleep, I can't wake up, I forget things, and I am basically a bipolar monstrosity: one minute I am yelling and shouting like a mad man, throwing and kicking things around the house, and the next I am crying wishing I was dead. It's been hell... and just kept getting worse.
The only semblance to a silver lining was the fact that one of the drugs (Rituximab) might actually have been helping. This was about the only thing that kept me going: the thought that I might actually, at some point, recover completely (or close to it) and be able to get off the meds. And then... it was no more. Whatever it did, it was over. I started getting worse again, so I don't know anymore...
I had this recurrent dream. It wasn't the same all the time, but the situation was always the same. In these dreams, for one reason or another, I got shot. Sometimes it was a robber that assaulted me on the street, or I got and some fight and someone pulled up a gun and shot me. The fact was I got shot. Usually in the abdomen. It was not an instant kill, but somehow I knew it was a fatal shot. Also, in these dreams, help was always out of reach. If I was robbed, I wasn't near a hospital, and the robbers took my phone. I could walk a little, but I knew I would never make it anywhere before I was dead. And so I had a sudden realization that, within minutes, I'd be dead. It was over. I was bleeding internally to death and there was nothing I could do about it...
The only semblance to a silver lining was the fact that one of the drugs (Rituximab) might actually have been helping. This was about the only thing that kept me going: the thought that I might actually, at some point, recover completely (or close to it) and be able to get off the meds. And then... it was no more. Whatever it did, it was over. I started getting worse again, so I don't know anymore...
I had this recurrent dream. It wasn't the same all the time, but the situation was always the same. In these dreams, for one reason or another, I got shot. Sometimes it was a robber that assaulted me on the street, or I got and some fight and someone pulled up a gun and shot me. The fact was I got shot. Usually in the abdomen. It was not an instant kill, but somehow I knew it was a fatal shot. Also, in these dreams, help was always out of reach. If I was robbed, I wasn't near a hospital, and the robbers took my phone. I could walk a little, but I knew I would never make it anywhere before I was dead. And so I had a sudden realization that, within minutes, I'd be dead. It was over. I was bleeding internally to death and there was nothing I could do about it...
Monday, January 18, 2010
Getting a little better :-)
Well, just had my latest visit with my rheumatologist and things look a little better. A check a couple of months back revealed that the Imuran was just not helping much with my Dermatomyositis. The CK levels just kept getting higher and higher (with the latest tests showing a level of over 700 IU/L, normal being below 190 IU/L) as the Prednisone dose was tapered down. So, it was clear that something else needed to be done.
At this point, to be honest, I was a bit scared. Well, not scared, maybe just disappointed, or a little depressed. See, I know I'm on a timer here, kind of sitting on a time bomb. Taking Prednisone it's only a matter of time before the bad side effects start to show. From what I've been able to gather, I have a window of about 2 years, before this happens... and I've already been under the drug for almost 1 year. The hope was that Imuran would help, and so I could be taken off of Prednisone. That didn't happen...
At this point, to be honest, I was a bit scared. Well, not scared, maybe just disappointed, or a little depressed. See, I know I'm on a timer here, kind of sitting on a time bomb. Taking Prednisone it's only a matter of time before the bad side effects start to show. From what I've been able to gather, I have a window of about 2 years, before this happens... and I've already been under the drug for almost 1 year. The hope was that Imuran would help, and so I could be taken off of Prednisone. That didn't happen...
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