There are things that no matter how many times I experience them, they still fascinate and amaze me. My body breaking down when I am getting sick in rapid fashion is one of those. I have been living with Lupus for over a decade now. I am constantly sore and fatigued because aside from my primary disorders of Lupus and Antiphospholipid Syndrome I have many secondary disorders, Chronic Fatigue Syndrome and Fibromyalgia being two of them. On a good day my pain levels are about a 4. On a normal day they hang between a 6-8. This is with being on 8 different medications to treat my various faces of Lupus. On a bad day is when I finally have to visit my doctor or emergency for prescription pain killers because I can no longer cope with the day to day pain. My doctors have been wanting to put me on Prednisone and daily prescription pain killers and antibiotics for years now. But that is the last line of defense and I am not willing to roll over, give in and stop fighting.
It is very hard to explain all of this to people. Especially when I share this very painful part of my life and instead of just listening, I am greeted with pity. My days are difficult. Simple tasks such as walking to the bathroom take me a long time as I need to talk myself into taking the steps necessary to walk. Every step is like knives are being dug into my joints. But I get up and do it. I move through my days moment to moment if that is what it takes to make it through the pain. And that is on a not so bad day. There are many other inconveniences that I live with thanks to Lupus and normally I do not think about them as they are always there and I just do what it takes. And then events like tonight happen and I become fascinated with just how Lupus works and I wish I had some way of examining my cells as this process takes place. It would be very interesting to be able to sit in and hear the conversations between the different systems and cells in my body as the battles that rage inside my body advance from little and quiet skirmishes to full out brutal and bloody war.
I have spent most of the last 6 weeks sick (and by sick I mean it becomes more difficult to do the moment to moment and I am at a point where I have to make a complaint about it). It started off with a really bad chest infection right at Christmas that started off feeling like a simple cold to become close to the point of hospitalization overnight. I was put on antibiotics and was as fine as you can be with Lupus for about a week. Then shortly after my birthday, I got another cold. This one hung in there for a very long time. I kept tweeting that I needed to get better by Feb 3 because I was going to GottaCon and I knew that would completely breakdown my defensive system. One small phaser blast and my shields would be down. I did not get better, however I learned from my experience at PAX when I ended up contracting H1N1 what extra precautions to take on top of the already extra precautions I took. (Yes going to GottaCon may not have been the best choice, but I need to actually live life once in awhile and there are acceptable risks you take especially when you are at war. Sometimes you need to sacrifice a few troops in order to win the larger battle.) I made sure to spend as much time as possible off of my feet. I made sure to drink more fluids. I made sure to always have something in my hands whenever possible so that I had an excuse to not shake hands as I was there on a public appearance as a special guest but didn’t want to appear rude when introducing myself or having to go into some explanation as to why I wouldn’t shake their hand. I washed my hands even more frequently than I normally would. And even so I didn’t get as much sleep as I should, I did get a lot more than I did at PAX.
I left GottaCon feeling tired and exhausted. However, unlike PAX, it wasn’t an unusual level of tired and exhausted, it was within my range of what I would consider normal for me. Then tonight it happened. Within less than an hour, my cold progressed from a mild cough now and then and a somewhat irritated throat to being barely able to swallow and feeling as if my throat is being ripped up my neck and out my nose every time I sneeze. My glands went from normal to the size of walnuts in what felt like a nanosecond, my sinuses are pounding and my head is all fuzzy. It is as if the auto-destruct sequence was initiated and somebody forgot to abort it. As awful as this may sound I cannot help but to be enthralled by the whole process. All I can think right now is that I wish I had Dr. Crusher’s sickbay so that I can place myself under the scanners and just watch the chaos that is currently going on inside of my body. Wouldn’t it be awesome if we had even a fraction of this technology? Technology that does not require giving blood or more invasive procedures. Technology that can help us scan and map in real time, to listen in on the communication process between all the different factions currently at war. Imagine all that we could learn about disease especially a disease that fights as covertly and in such a guerrilla manner as Lupus. Imagine the possibilities. I just can’t help but to think of the mechanics and the wonder of it all.