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Complications

Posted Apr 03 2013 2:18pm
I have been diagnosed for about 15+years of lupus nephritis, I also have the osteopenia in my lower back & spine (I was going to PT 2x week, but the therapist I was working w/had to leave in a week for another job...the PT that replaced her did nothing, and has me regressing back, starting w/cane, shorter walking periods, needing to use a wheelchair sometimes). I'm sad that I lost this wonderful therapist, bc while working w/her I was able to put away the cane, finally take the wheelchair out of the car. She had me doing my therapy on a reformer (which is basically using your own weight & help w/springs, which really helped me gain strength). In all these years if living here, she was the first one to be reversing the signs of my frail bones. My whole back & spine have always hurt, but way up (near my prednisone hump) it aches so badly. Now my right leg - up to my hip goes numb a lot, my hands have been really giving me a hard time. I'm scared that one day I will lose my right leg, due to circulatory problems (Raynaud's, diabetes, or whatever the reason), I'd rather die than have an amputation. They tried to take out my gallbladder many times over, but I fought with everything I got. I'm not sure why we have a gallbladder anyway, it really isn't necessary (but on that fact alone, is NOT a reason to have something removed, unless damaged), but we were obviously born with one. Surgery or removal of anything is my last resort. I have terrible neuropathy that burns, morning and night in both hands & both feet (when I can feel my right foot). Idk why, but the therapist used to think that I always leaned to the right, but to me...it's normal. As she was straightening me up, I lost balance, fell a lot, especially in my sleep my large head would be wedged between the bed & nightstand. I had to go to the ER once bc a bump just rose up on my forehead, which I assumed was from when I fell off the bed that day, my head landed on my purse with a big metal buckle. They brought the swelling down with anti-inflammatories, but I'm severely photosensitive and experienced a terrible migraine. I was given medications for my migraine, then moved to a room with the lights turned off, but still hooked up. Then someone (I don't know who), possibly my guardian angel, put oxygen on me while I was waiting for my husband. He said that when he came to get me, I was snoring like some large animal, passed out (during the time frame of all the unbalanced, falling -seemed like everywhere. I was experiencing insomnia, no matter what heavy sleeping drugs I took). So he let me sleep for 2 hours & finally woke me up to go home. Of course, I had to follow-up with my primary doctor. Again, the balancing issues, almost falling down a flight of stairs, while at his office we were trying to remember what had been going on recently, as if something was triggering this balance, insomnia, etc. then, while I was going through what had happened at the hospital...his nurse immediately checked my pulse ox, mid 80s was the result...immediately started oxygen therapy that same day, a respiratory therapist had to check and make sure I was getting enough oxygen, my pulse ox just kept dropping. Finally stops around high 70s. They put me on oxygen 24/7, amazingly I was able to sleep again. They did a sleep study, of course my husband had to be with me...they thought...sleep apnea. Nope. While they were doing the study with that crazy head setup and probes, to make sure they were measuring everything. I was not put on oxygen simultaneous, they wanted to see what type of raw results they would get? Of course, I think 2 hours into my sleep, the nurse came in to attach the oxygen hose to my head/mouth contraption, which of course, woke me up. Just the feeling that she was watching us, made me feel creeped out. Like why couldn't she watch the readings off the machine, then watch us? No, she wanted to watch the whole sleeping experience, it irked me out! So, no sleep from the time she attaches and turns on my oxygen. There was no sleep apnea found, but it was strange while I would sleep after a certain amount of time, my oxygen just starts going down, a lot. I went to National Jewish Hospital in Denver, saw my fair share of pulmonary doctors, testing on me like I'm a Guinea Pig, to find nothing substantial. After how many visits? Too many. Avista Adventist Hospital in Louisville, attempted to do some testing and they supposedly found something, but in the end, it was all inconclusive. After my initial lump from falling...I started to get lumps on the back and too of my head, of course covered with my head of hair. They were very painful and grew much larger than the initial lump from falling off the bed. My primary had to be on vacation during that time, so his partner saw me. She was speaking so fast in medical terminology that I could barely grasp, in the end...she's like it will either go down on its on, but generally we would have surgery to remove it, but bc your bump is over a large part of area slightly raised that would be a last option. She said it is generally a smaller area, in which they take a scalpel and cut it clean off. I look at her like okay lady, back away...I will wait for my doctor to come back. Several weeks pass and I continue with these lumps on different parts of my head, but generally to the back & very painful to touch. My primary took a stab and just said it was an accumulation of pus and that I need to put a hot compress until it drains down? I think he meant out? Well, like I said it is in the midst of my thickish brown hair, simply applying a hot compress isn't going to reach it. So I would lean against the bathtub on my knees and pull my hair out as a ponytail, my husband would fill a large pitcher with practically scalding hot water, and slowly pour over the spot where the lesion, cyst or whatever the hell the first doctor said...btw, I never really found out exactly why or what it was...my husband and I had to do this like two to three times a day, after a few days, they started to shrink. I wanted to know exactly what was inside of them, so I wouldn't wash my hair. My primary thought pus...it has to come out somewhere, right? There had to be a pretty good amount, so we couldn't miss it when my husband slowly poured the scalding water over it, plus it wasn't like one day, it totally deflated...all gone, it slowly got smaller, until it was almost flat with substantial pain if any pressure was on it, so I couldn't sleep on it. We never found out what it was, of course later when I press my doctor, '...what the heck was that!' Of course, the lame answer of I don't know, which meant, "It's probably from your lupus." Yes, I get that answer frequently...if there's nothing to say and of course, this doctor never admits that he doesn't know. At least, my rheumatologist has the guts to tell me, if he hasn't seen it before or doesn't know...he just says, "I don't know."
World Lupus Day is May 10th!! Help spread awareness!!
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