As most of my facebook friends know I have been in a really bad flare. And in the last couple months I’ve had some troubling symptoms start that might suggest another autoimmune disease. I have really bad esophagitis from my year of prednisone use and I try to control it with ranitidine (probably not spelled right) it’s a medication that I have to take twice a day in order to coat my stomach and esophagus, because my stomach acid for some reason can no longer stay down. This medication has been awesome for me until now. Food is getting stuck in my throat, it hurts to swallow certain things, it stings when I eat my cream of wheat in the mornings, I have been choking on regurgitation or vomit in the middle of the night and the burning gets so bad that the only thing that soothes my esophagus is cold milk, I get a heavyness in my chest like someone is sitting on it, and on rare occasions as in maybe 5 times in the last month or so I have been eating and started choking on my food. What happens is the food goes down my wind pipe. But it’s not the normal thing where you eat too fast or are talking while eating. No this is more like I’m eating, and my body automatically sucks in air or something is happening to cause it. The last time it happened I coughed so hard I saw stars and my sister said my lips turned blue. I fired my last GI specialist, he is a nice guy but he didn’t do the correct biopsy on my intestines when I had vasculitis in there. So I had to say goodbye. He was so nice and he smelled like really good. I have a really good one that is all the way out in Lutz and I made the appointment in June but he was booked all the way out to September. So I have to wait until September to get answers. The good thing is he’s like the best in the area, it’s just hard to be stuck in limbo. When I went to the hospital for my flare of course they didn’t check my blood for my CRP levels or my SADE rate. She said the blood work was normal (never the case, my blood work hasn’t been normal in a year and a half, I’m in the middle of a bad flare and you are telling me my blood is normal) whatever, anyway she said I was severely dehydrated, now if any of you know me you know I try to drink a ton of fluids and the other thing is when I’m going through a flare I do not properly digest food. I will have to use the bathroom 3 or 4 times usually 20 minutes to an hour after I’ve eaten sometimes less time than that. My stoole is either really dark and runny (tar like) or it is bright yellow (chalky like) all signs of my body not taking in nutrients. (not good) Also if you are disgusted by this I’ve done my job. At the beginning of all this I told you I’d be raw and real. When I use the bathroom and have this ungodly experience it is so painful that I either get tears in my eyes or I’m crouched over holding my gut. This can last anywhere from 45 minutes to an hour or more. Sometimes I think I’m finished and I go back to bed just to get up and go 3 more times. It’s awful. And the last 2 to 3 days my ranitidine hasn’t been effective, I have been waking up feeling regurgitation and burning, my stomach is burning, I breathe heavy, and I keep waking myself up having conversations with my mom while we are both asleep (that’s funny though).
I haven’t had any skin involvement and I’m very thankful for that. Walking around with bright red spots all over 80% of your body is shitty. But here’s the thing, while I was in the hospital the other day my skin started hurting and all my scars from my really bad outbreak turned bright (not red) but they were brown and after I was given my IV solumedrol they went down. Now they did a CT scan but they gave me the solumedrol before that and anytime I get the abdominal pain you can visibly see my intestinal/abdominal area including up to my spleen are bulging, like it’s super noticeable, but it made no sense to give me an anti inflammatory medication then give me a CT scan to check for inflammation. So naturally within 30 minutes of receiving that very strong steroid my inflammation decreased in my gut. So there was no inflammation on the CT which I knew would happen, but the problem was that I had not been told I was getting the CT. I would have refused the steroids until after. I know my body and I can tell you that things can change from one minute to the next and it’s always a gamble going to the hospital. I’m always very assertive about my care and it always offends the egotistic male doctors who all apparently work the night shift because they suck. But it’s funny, day time doctors and female doctors don’t give me as hard a time. For example the other night I told the male doctor on early morning/night shift that my care plan in florida is I come in get a CT scan if my pain is bad enough to make sure that I don’t have a perforated bowel or an obstruction and to see if there is an excessive amount of inflammation with air in one spot. This would mean that my bowel is being actively attacked by my immune system. It has a very distinctive pain and it feels like you are dying. It makes me cry every single time and yesterday was no exception. I told him that I get solumedrol, dilauded, and usually get admitted for observation. To basically help me get through the flare. As soon as I said dilauded he rolled his eyes at me and shook his head with a smirk. I wanted to scream Fuck you, you fucking fuck. I need to get rid of this pain. You know what douche bag dick said, ” I’ll give you the solumedrol, another anti inflammatory, and I’ll give you pepcid. ” I looked at him and said, “do you think I’d come in here if all I needed was pepcid?” yeah my favorite pass time is coming into the ER and having a doctor laugh at my pain and tell me I have fucking gas. Now fast forward through all the fits of crying I had because even though the inflammation went down I still had bad pain. Shift change, best part of the day when you have a shitty doctor. There is a 50/50 chance you’ll actually get someone who will listen. She looked through everything. She said, “what do you want me to do for you, you know best.” I told her about my care plan, she looked at my mom and my mom agreed and within 30 I was pumped with zofran and dilauded. Every single time I get that drug I hate it. It is so hard to explain what it does to me. I am in so much constant pain that I never realize just how bad it really was until I get dilauded. I can actually feel it hit all my joints, all my achy spots, and it’s like a wave of horrible gut wrenching agony, then nothing but exhaustion and loopiness. I used to joke with my doctors at Florida Hospital of Carrollwood and they would ask me what my pain scale was and I’d be like it’s a 6 right now but ask me again when you give me the pain meds and I’m always like oh that was an 8 for sure. I never ever say 10 because I know it can and will be worse at some point. Every time I get dilauded I grip the hand rails of my bed in anticipation of terrible pain. And when it’s gone I can finally sleep. That’s the thing with autoimmune diseases, you have to sleep your flare up, off. If you are in pain, it’s very hard to sleep, so you just keep getting worse. When you have a chronic illness you understand why people get hooked on these medications, it’s so much better to not feel physical pain all the time. In my mind my pain is the only thing screaming, baby you are alive. I am one of the only people I know who wait until they absolutely can’t take it anymore before I go ask for pain meds. I have seen up close and personally what these drugs do to people and families. It’s awful. And the problem I have is they hand it out like candy to some people but the people coming in with legitimate chronic illness are having to break down and cry before we get what we need, I’ve even gone off on a doctor before. People with chronic illness are not irresponsible, (there are some that ruin it for the rest of us) but I wish these doctors knew how hard it is to be stripped of energy and in pain fighting to get the proper care. I told the nurse, “look I don’t want to be here as much as you don’t want me here. I want to sleep this shit off.” I think at this point especially in Arkansas (really bad drug problems here) I will need to have a care plan order signed by my doctors and I’ll just carry it with me. Maybe that will keep me from having to fight with these douche bubbles. This is why I want to be a doctor. I know they see shit every day that makes them cynical, especially ER doctors, but a lot of these doctors just practice and have no first hand experience what it is like to be chronically ill. There need to be more of us going into the medical field. We need to flood this system with people who can tell the difference. I can tell you there is a huge difference between me and a junkie. I’m not a junkie. Everyone who truly knows me or has lived with me knows I put up with a lot of pain before I go there for the simple fact that I don’t want to be hooked.
I think I’ve rambled on enough about all this. I hope that this flare ends soon so I can sleep.
A goddess with flare 😉