Acid reflux update #lupus #spoonie

For the past couple weeks, I’ve been losing a lot of sleep. I’m pulling all-nighters sometimes because I can’t breathe when I lie down. When I do sleep it’s for about 4 hours at a time. I’ve had this problem for a while and it’s gotten to the point where it’s greatly disrupting my life. It’s hard to make plans or appointments when you don’t know if you’ll be able to sleep or not the night before. Sometimes I end up sleeping during the day and it fucks up my medication schedule. I’m so exhausted, and I dread bedtime.

Yesterday I had a barium swallow test. Basically you swallow a thick radioactive liquid while in various positions and they watch on a live x-ray to see how your muscles work, and if it comes back up. They were able to determine that my acid reflux flows all the way up to my esophagus. I already knew this, since I clear my throat all goddamn day long, but I needed them to know it. It was probably a weird thing to tell the technicians, but I said “I’m so glad you guys found something, I’m sick of tests coming back normal.” I feel that way because I know something is wrong and I’m tired of not finding it.

Today I got a second opinion about everything from another GI. I feel like my current one isn’t doing much to help me. His idea is to avoid surgery and control everything “as naturally as possible”, meaning without pills. I’m doing everything I can do, and I’m losing weight and not sleeping. I feel like I can’t even breathe most of the time during the day. The second GI seemed irritated that my other doctor hasn’t been doing much for me, and says my reflux is a significant issue. He gave me erythromycin because in very small doses it is used to promote more gastric motility so my food moves past my stomach faster. We’ve scheduled a manometry which is a test that will determine the level at which my lower esophageal sphincter is functioning. Basically they’re checking to see if the muscle between my esophagus and stomach closes efficiently, which we know it does not, but they need to understand to what extent.

I am also scheduled from my first GI to do an ultrasound on my gall bladder to see if it is perhaps enlarged or inflammed. This could possibly be creating too much acid, or creating the “full” feeling I have a lot of the time

I believe my breathing problem is caused by my acid reflux. If I have a rare night where I don’t have reflux, I sleep just fine. I can’t sleep on my right side. The barium swallow test showed us that especially.

I’ve asked about breathing problems in a GERD support group, without much luck. People always like to pull the “sounds like anxiety” bullshit. I have anxiety and I know what it feels like, and trust me,this is different.

My second GI believes I need surgery, and I do too. There isn’t really  a pill or a diet that that is going to stop reflux if your stomach doesn’t even close up all the way. He talked about doing a laproscopic fundoplication where they fold the top of your stomach around the bottom of your esophagus a little and stitch it to tighten the space between the esophagus and stomach. That way, the stomach would close and there would be no more reflux.

I really would love to feel better.

 

 

Advertisements

A little of April and May #lupus

I know I am overdue for a blog. I don’t really remember where I left off last time. I’ve been to a new cardiologist and I had an ultrasound to see if there was any inflammation around my heart causing me chest pain and shortness of breath. I have yet to know the results of that test because the doctor cancelled my appointment since she will not be in town.

The cardiologist did mention that I could also have a problem with my diaphragm. I’m starting to believe that that is my whole problem. I notice now when my heart burn and gastritis are bad, so are my chest pains and shortness of breath. My breathing trouble at night gets worse when my stomach gets worse. Nothing seems to stay down in my stomach anymore and I’m clearing my throat all day long from the acid reflux.

I started taking Carafate about 5 weeks ago in hopes of healing the gastritis, and so far I don’t feel any better. I still have to eat right before bed and eat in the middle of the night or early morning to get the grinding pain to stop. My stomach grinds even when I just drink water. I’m not sleeping very well. I’m sleeping propped up which has been really hard on my back since I am a side-sleeper. I feel like I can’t breathe when I sit. I feel really full when I drink water. I’m miserable with this problem, to be honest.

My GI wanted me to see a nutritionist to get ideas for meals, but I honestly don’t know what they would tell me to do that I’m not already doing. I can’t possibly eliminate anything else, and everything I have eliminated has been for good reason so there isn’t any way I could put it back into my diet. I have made an effort to still try to be as nutritionally sound as possible.

I’m going back to the GI soon to talk about the carafate and my diaphragm.

I went to see a neuropsychologist to get some help with my brain fog. It’s really bad, so bad that I don’t know how I will ever be a functioning adult if I don’t get it sorted out. I had an MRI on the 10th just to check up on my brain and make sure I don’t have lesions and stuff. The doctor wants me to do some testing for my brain fog but they didn’t have an appointment for me until the end of summer so I’ll just be waiting til then.

I’m still taking the Humira shots twice a month. They are still helping some of my lower GI tract inflammation and also some of my muscle pain seems to be better. I would be hard pressed to say it isn’t helping some things. I am still disappointed that I feel so awful all the time, but I am hoping if I can get my GERD/hernia and my brain fog sorted out, I might not feel so terrible. Those 2 problems are really bothersome and could possibly be overshadowing any other relief I might be getting from the Humira.

I’m having a bad time with vertigo. I’m dizzy just from looking down slightly at my computer screen. I noticed my vision seems a bit weaker lately, not sure if it’s just time for an adjustment in prescription or if it means anything. I do have an astigmatism for which I do not wear corrective contact lenses. I’ve always been fine without torics. But lately it bothers me when I wear my glasses too and those do correct my astigmatism. I tried my toric samples the other day and my vision didn’t seem to improve. It’s not a big deal, just an annoyance. Maybe my vision is blurry because I don’t sleep much. Who knows.

Some of you noticed that I haven’t written a blog in a while. I truly appreciate everyone that follows along with me. I have someone in my life that is harassing me, especially on the internet, and I have continued to write knowing that they read it and that they may decide to bother me more, and that isn’t going to stop me from doing what I feel is important for people who like to read my blog and for myself. I considered dropping out of sight and closing down my blog and making an attempt to write somewhere else anonymously, but I don’t want to give anyone that kind of power over me, and I don’t want to abandon people who have been so supportive in the last 4 years. I’ve recently had a change of attitude over the whole situation and now find it laughable and quite pathetic.

Cheers to that.

Process of elimination #lupus

I’ve had problems with breathing at night for quite a while. It started a few years ago and would happen occasionally, and seemed to get worse when I took tramadol for some reason. It’s gotten worse since then. I’ve seen  a pulmonologist, cardiologist, neurologist and a GI. So far everyone just blows it off.

It’s been really bad. Two nights ago, I was up all night long. I went to bed at 7am. I felt like someone was squeezing my chest, and every time I was about to fall asleep, I woke up choking for air.

It sounds like sleep apnea but I really don’t think that’s it. I tested negative for it in 2014. I’m more concerned that it might be my heart or my gall  bladder.

For most of February I was probably getting 4-5 hours of sleep per night. I tried propping my bed up for a while, which was terribly uncomfortable. I stopped taking any medication that has drowsiness as a side effect since that seems to make it a lot worse. I was doing breathing exercises before bed and whenever I woke up in the night, which only provided temporary relief. If I fell asleep at all, it was by accident.

On the nights I did sleep, I was waking up hot and drenched in sweat, which can sometimes be a sign that your heart is doing fucked up shit.

More recently, I’ve weened off the metoprolol (beta blocker for heart palpitations) and also lowered my blood pressure medication (both at my own will) and I’m doing a little better. I had a stress test last October that showed that my heart was performing well while on the metoprolol, but I’m thinking that it’s causing a problem now.

I’m still taking the Norvasc for my blood pressure, but I’m down from 7.5mg to 2.5mg. My blood pressure is elevated and my heart rate is in the 100s, but I’m sleeping better. I have to sleep.

As you’ve read before, I’ve had some problems with sitting in certain positions. I’ve given up on sitting on the couch because it gives me chest pains and shortness of breath.

I am going to make an appointment with a new cardiologist because my current cardiologist likes to blow me off and tell me to exercise. I’ll exercise as soon as I can breathe.

I am hopeful to find a cardiologist who knows how to look for even the most minor inflammation. My current cardiologist had admitted that sometimes inflammation can be so mild that it’s easily missed.

Also, I’m having a terrible time with gastritis and acid reflux. I stopped taking the Duexis (ibuprofen) and I also think that it’s made a difference in my breathing at night. I occasionally just take over-the-counter ibuprofen. I haven’t had it in a few days though. I’m probably more achy than usual but it hasn’t been unbearable. But I haven’t really left the house in a few days. Also, my period is next week so I know I’m fucked for pain and headaches.

My breathing gets worse when I have my period too. I was thinking about taking the progesterone shots to stop it.

I’m going back to my GI and asking him to check my gall bladder. I’m on 240mg of Dexilant per day, which is a dose the pharmacy didn’t even want to give me, and I still feel like I am drowning in stomach acid.

He has been reluctant to provide me with any real treatments so far. The only reason I have the Dexilant is because my rheumatologist gave it to me. I am hoping that at my next visit with my GI, he will be more proactive. If not, I’ll have to find someone else.

The gastritis is keeping me up at night. I have to get up at 4-5am and eat, and take medication for it so I can (hopefully) go back to sleep. Otherwise I feel like lava is eating the inside of my stomach.

So, maybe it’s my heart, or my stomach, or both. We’ll see.

I am also going to see another neurologist for the breathing issues and a bunch of other shit. I’m having a lot of muscle weakness in my hands and I’m dealing with a lot of brain fog.

For the past few weeks I’ve had some kind of tendonitis in my hip. My knee was bothering me too, but that seems to be better. I can’t really think of anything I did. I tend to bear my weight on my left leg when I’m standing for a while, but I don’t see how that could cause my hip to hurt for 2 weeks. Then again, I suppose it could, since Lupus is a dick.

I’m having a bad time with my body temperature. Sometimes I’m too hot, and sometimes I feel like someone drained all the heat out of me. I’ve been getting cold hands and feet like usual, but I’ve also been getting ice cold spots on other parts of my body, like my knees and hips. I don’t really know what that’s about. It makes me worry about my circulation. I don’t know if you can get Raynaud’s in other parts of your body. Or perhaps it’s the “vasculopathy”. More mysterious bullshit to deal with.

I also have a shivering problem, and sometimes I’m cold, and sometimes I’m not. It’s really hard on my muscles because it makes me really tense. It’s uncomfortable. I don’t know what that is, either.

I have an appointment with my rheumatologist this week. I’m basically just going to reiterate this blog.

 

 

July blog #lupus #stillsdisease

I had my 4th Actemra last Tuesday. I told them I didn’t want Solu Medrol with it this time. That has honestly never helped me. It actually seems to make my pain worse. It didn’t help the fevers either. The other night my feet and knees were on fire with a burning hot rash. All my joints have been hot, and I’m just feverish in general. I got up early today because I was too hot to sleep. My temperature is usually around 99.1-99.8 F which isn’t high but apparently it’s enough to interrupt my sleep. It’s strange because taking ibuprofen or tylenol don’t seem to help that much. I’m not feeling anything with the Actemra yet. Maybe I’m not supposed to. I’m still waiting until the 6 month mark, but so far I feel absolutely nothing. I’m still easily pained and easily fatigued by the simplest activities. And I’m too friggin’ hot.

My neck pain and headaches have been really bad. The neck pain turns into stiffness which turns into vertigo. I’m having a really hard time with range of motion. I still can’t look down without getting the spins. I feel lightheaded most of the time. Wearing a neck brace seems to help. It’s not very comfortable though.

I had the EEG the Friday before my infusion. The office fucked up and didn’t tell me that I was supposed to come in sleep deprived so that I’d be asleep while they did it. It was a giant waste of time. I guess one of the staff (the one who has been rude to me) was in a spat with the EEG technician and they weren’t talking to each other, because some people never leave high school. I feel like she sabotaged my test by not telling me how to be prepared for it. Of course I’m just speculating but I wouldn’t put it past this woman to do such a thing. She orchestrated a big lie last time I was in the office to cover her own ass because she forgot to give me orders for a blood panel. She treated me like I was too lazy to go, in front of the doctor, when I didn’t know I was supposed to go at all.

On a side note, I am not one of those “I can sleep anywhere” people. I can’t even get to sleep in my own bed at night when I want to, so even if I did come in sleep deprived, I probably wouldn’t have slept for the test anyway, I would have just made myself feel like shit by not sleeping and then dragging myself to Los Angeles.

I’m probably not having seizure activity. Neurology was my first place to go with my symptoms since I felt like they reminded me of some episodes I had when I was a kid. We talked about doing a 5 day hospital stay to monitor for seizures but I don’t think I’m going to go through all that. My episodes last too long to be seizures.

I realized that my episodes at night are at least partly due to anxiety. I seem to get short of breath when I’m trying to fall asleep. It’s totally involuntary, I don’t really do anything to stress myself out before bed. I feel like the panic comes to get me when I’m the most relaxed, actually. I’m a wired person. I can’t even nap anymore. If I don’t take something at night to make me sleepy, I’ll never sleep. I don’t drink coffee or alcohol which I know can mess up your sleep schedule. I know that just in the past few years my anxiety has gotten worse because my pain has gotten worse. My pain makes it so I can’t sit still. I want to take my body off like it’s a big itchy sweater. Obviously pain is worse than an itchy sweater, but I don’t know how else to explain it. It just drives me nuts.

I’ve got some other things going on outside of my health adventures that are adding to my anxiety. I try really hard not to allow myself to take certain types of stress on, but I think sometimes I can’t help it. I told my rheumatologist about my stress, my shortness of breath at night, and that I haven’t been sleeping. I usually take xanax but he said that just relieves the symptoms and not the actual problem. He gave me Seroquel. He said it would help me feel relaxed and sleepy. It’s usually used for mood disorders and schizophrenia, but can also be used in my case for an off-label treatment like anxiety or insomnia. I’ve been taking it for 5 days now. The first 2 nights it made me feel really drugged. It helped me feel relaxed and sleepy, but it made my body feel very heavy and off-balance. I was a little worried I might fall when I got up to use the bathroom. I felt a little dragged out during the day. By the third night, it didn’t make me feel so drugged. It actually seemed like it wore off around 4am, because I was awake and wired. I didn’t really feel as tired during the day. I almost feel like even though it’s helping me at night with anxiety, that it might just be pushing it off until morning, because I’m finding myself feeling more anxious during the day lately. I’ve only been on seroquel for 5 days though, and I’m sure there’s a period of adjustment. It’s also hard starting a new medication when I have my period because everything gets thrown off from that, so I can’t really tell how something is truly effecting me until I’ve been on it for at least a month.

It’s been raining here. We actually had thunder here, which almost never happens. The rain doesn’t really make my pain worse. I feel much worse on the days when it’s 90 degrees and 7% humidity. It’s muggy and sunny today. I wouldn’t mind if it rained more.

I’ve had a rash over the backs of my knees and inner elbows since March. I also have it under my arms. After my 3rd infusion, it flared. Just in the past few days it has peeled and gotten lighter. I’m pretty sure it’s eczema. I sent pictures to my dermatologist a couple months ago but she just blew me off and said it was a “fleeting lupus rash”. My rheumatologist said lupus doesn’t cause itchy rashes like this one. I’m not worried about it but it is annoying that it’s on my inner elbow where I prefer IVs to be placed. It seems to be fading for now. I have a lot of general skin irritation that doesn’t always come with a rash. Some days I can’t wear anything besides sweatpants because it’s just too uncomfortable.

I’m still taking the Dexilant for acid reflux. I’m on 60mg 4 times a day, which is a huge dose. I take a double dose of magnesium so it doesn’t get low. I backed off the Dexilant to 60mg twice a day because I was getting terrible stomach cramps that were lasting all day. The acid came right back and was keeping me awake at night. I went back up to 4 times a day because I didn’t feel like dealing with all the annoyances the acid causes, like the pain, losing sleep, and gross taste in your mouth all goddamn day long. It seems like as long as I take miralax and “keep things moving” I don’t get as crampy. I had a bad crampy day when I was only taking it twice a day, and that’s why I decided to go back up on the dose. The magnesium helps too. I guess I’m just gonna try to deal with it, because I can’t have grinding stomach acid waking me up at 4am.

I straightened up my room a little yesterday. I was pretty tired after. I didn’t do anything crazy, just put stuff where it goes. I don’t understand why I feel like I have no endurance. My muscles get tired so easily, I get short of breath, and a headache from doing anything that slightly raises my blood pressure. I shouldn’t have to recover from putting shit in a drawer. 25 going on 90.

I want to sit and draw but my back gets so tired so quickly. And I get the spins when I look down.

Some part of me misses taking the pamelor for my headaches. It made my concentration terrible and fucked up my mood but I didn’t have a headache all the time like I do now. I didn’t get a headache from bending over. Now I just feel like I can’t do anything because I have a headache. I’m probably gonna go see a new neurologist, since my current neurologist has a witch for an assistant, and since he gets bored with headache patients. I guess I’m just ready to try the next thing, because this headache all the time shit sucks.

Hot, bored, and skeptical. There’s a giant bag of animal crackers with my name on it.

TTFN

Actemra #3 and neurology #lupus #stillsdisease

I had my 3rd Actemra on Tuesday. I talked with the doctor about my plans to see my neurologist this week, and to make sure it was alright to have my infusion since I’ve been having new symptoms. I also told him that I felt I had a few weeks where I wasn’t waking up in the night with a fever, but it had started happening again. I also had a few weeks with more mild rashes compared to the feverish red rashes I usually get, but that those are back too. He told me that some people feel like Actemra lasts for 3 weeks, and he decided to give me some solu medrol for a boost.

Solu Medrol has made me feel like crap in the past, but it was with other infusion drugs, so I figured I’d give it a go to see if it helps with the fevers and stuff. So far, I feel like crap. I asked some people in the support group if Solu Medrol ever made them feel worse instead of better, but apparently I’m the only one. When I got home, I had the leg cramps, and they went on all night. My eczema has gotten pretty red and angry, and I had headaches and heart palpitations for a few days. I’m still having fevers and rashes. I’ve slept a little better the past two days, but the fevers are still waking me up.

I’ve been having pretty bad vertigo for the past week. I had an ENG in March, which didn’t show anything. I don’t think my vertigo is an ear problem. I was doing some reading online (y’know, consulting Dr. Google) and I was reading about cervical vertigo (cervical as in spine, not lady parts) and how some people with arthritis in their neck can get vertigo. It makes sense to me, because when my neck pain gets bad, that’s when I get the vertigo, and I usually have a headache with it too. I had a spell of vertigo just like this a couple summers ago. It’s awful. I can’t do anything to occupy myself. I can sort of watch TV but using the computer, drawing, and reading all make me horribly dizzy because I have to look down to do them. Wearing a neck brace makes it better, which reinforces my theory on a cervical cause. Wearing a neck brace is terribly uncomfortable, though. Also, I don’t have vertigo when I get up in the morning, probably because I’ve been resting my neck all night. I don’t really know what makes it flare, but last time it was this bad, it was also summer. Probably a coincidence. I don’t know.

I went to see my neurologist yesterday about all my weird neurological symptoms. He thinks my episodes are “too long to be seizures”, but he wants to order up a seizure sleep study to see if there is some epileptic activity in my brain. Unfortunately, and this happens a lot, he referred me to a doctor that doesn’t take my insurance. So now we have to try to figure something else out. He also talked about the blood vessels in my brain, and how the vasculitis (and aftermath “vasculopathy”) can cause changes in blood flow to certain parts of my brain, which could cause symptoms as well. As far as some of my meds making it worse, his advice was “don’t take those” which was really kind of a “no shit Sherlock”.

Kinda frustrated with all of it. I don’t want to stay overnight for some test that may or may not figure out the problem, and I don’t want another pill with a billion side effects if they happen to find something. I’m losing a lot of sleep from my symptoms, and I have medications that were helpful for other things that I can’t take anymore, so I have to deal with those symptoms too.

I keep thinking back to when one of my (ex) doctors told me she would have me back on my feet and going back to school in 6 months. That was 3 years ago, 5 treatment plans ago, 2 diagnoses ago, and a partridge in a pear tree.

May and June stuff #lupus

I had my second Actemra on May 12th and I’m due for my next one on June 16th. It went well. I didn’t seem to get a headache like I did the first time. It has made me pretty tired though. I’m looking forward to the next one, and as always playing the waiting game. I don’t want to wish the year away but I’m antsy about getting these infusions. I want to get them done and know whether they will work or not.

My rheumatologist put me on Dexilant, which is a proton-pump inhibitor similar to prilosec/prevacid/nexium. He seemed irritated that my GI wanted to try to control my acid reflux with diet. I’m taking 60mg 4 times a day, which is a pretty big dose. The pharmacist wasn’t comfortable filling the prescription for that much and had to “file a report” and double check with the doctor. I trust my doctor over the pharmacist. So far I don’t really feel like I’m getting any relief. I’m still having reflux that makes me have asthma, still clearing my throat all day, still avoiding acidic things. It’s obnoxious and I’m tired of eating bland.

I’m going to see an opthamologist tomorrow about my dry eyes. I use restasis but I haven’t been able to wear my contacts in a long time. I feel like I have sand in my eyes. I like my glasses but I hate wearing them all the time. I just hurt so much sometimes that I can’t stand to have the weight of them on my face.

I’ve had this weird shivering problem since I got my period in April. That cycle sent me into a weird flare. At first I was cold along with it, but now I shiver when I’m not cold. I thought it could also be from stopping the Pamelor, but it’s been going on for too long now. It seems like it comes on around the same times every day.

I’ve had this odd problem for the past couple years where when I take certain pain relievers, they make me short of breath at night and I wake up over and over because I stop breathing. I was tested for sleep apnea about a year and a half ago and they didn’t find any signs of it.

Sometimes I have this breathing problem even when I don’t take those pain relievers. I’ve stopped taking them altogether, but still have “flares” of this problem. I’ve been having a problem with it all week and I don’t know why. It’s been awful. I haven’t slept much.

I went to a concert for my birthday a few weeks ago, and the light show was pretty intense. It occurred to me that I had the shivers pretty bad during the concert, and after, and just generally felt like crap. I didn’t think much of it since I always feel like crap, and since I had already been dealing with the shivers.

It also occurred to me that I played video games for a couple hours on Wednesday, and that night when I went to bed I couldn’t shut my brain off. I hadn’t been playing right before bed, but I saw flashes and colors when I closed my eyes.

On Thursday night, I put it all together. I went to bed, had all my usual meds and I was listening to music. I was a little wired. Sometimes that happens to me at bedtime. I was just trying to relax. But I suddenly had this horrible feeling come over me, like I just mainlined espresso or something (which I later realized was an “aura”). I felt pretty nauseated, and the shivers started. I tried to lie down with the lights off but I was having the breathing issue that kept jerking me awake. It all felt scary so I stayed up for a while, ate some food, drank one of those vitamin drinks. I never really did sleep much after that. I was twitchy all night. I remember the whole thing. I don’t really feel like I was “altered” in any way, other than feeling a little freaked out.

Oddly enough, my cat had been waking me up in the night all week. She absolutely would not leave me alone. It’s been driving me nuts. Apparently she knows something I don’t.

I had some epileptic activity when I was a kid. I thought I had grown out of it. I didn’t have the “fall to the ground and lose consciousness” seizures that everyone thinks of when they hear “epilepsy”. I had these spells of nausea, shakiness, and feeling awful, followed by sleep. They seemed to come on right after I would start eating a meal. I wouldn’t pass out. I didn’t take medication for it.

I’m worried that I might be having seizures again. I haven’t had an EEG in a while. They don’t always pick up seizure activity, but I’d like to have another one. I haven’t been able to explain why certain pain meds affect my breathing at night, but now I know some of them can affect seizure activity, as can stress and lack of sleep.

I’ve had a couple episodes during the day since Thursday night. I felt really crappy suddenly while I was in the shower on Friday. I had that aura feeling again Friday evening, followed by nausea and the shivers. I’ve been monitoring my blood pressure and temperature when it happens, both have been normal.

I have an appointment with my neurologist that I was originally going to cancel because I felt like he couldn’t help my headaches anymore. I’m going to keep it so I can talk to him about seizures.

I’ve probably had these symptoms for a while, but I’m so used to feeling like crap, sometimes it takes me a while to put things together, or to even realize that something is a symptom. I tend to blame symptoms on other things, not realizing they could be something new. It’s hard to wonder why you feel like crap when you’re so used to it. I’m now realizing all the things that bother me that point to seizures, and I feel dumb for not realizing this stuff sooner.

Bladder Problems #lupus #stillsdisease

I shouldn’t be awake right now, but between midnight and now (3:50am) I slept too deeply. There is such a thing, unfortunately. I didn’t drink enough water for those hours I was asleep. Enough water for me, anyway. I have a problem with my bladder that has largely been ignored by my doctors, save for multiple useless urine tests. I get pressure and burning in my bladder and urethra if I don’t drink enough water. “Enough water” for me is about 7-8 bottles, which is almost twice the recommended daily amount, and the end goal being to dilute my urine enough so that it doesn’t irritate my bladder. I don’t recommend drinking that much water as a solution to a burning bladder. I am also chronically thirsty and I can’t seem to help it.

I have had every wee wee test ever to see if the burning is perhaps bacterial. I have no infection whatsoever, and never have. I’m assuming then that the burning is due some chronic inflammation caused by the Lupus or the Still’s Disease, and exacerbated by acidic urine. People don’t realize that with auto-immune and auto-inflammatory diseases, there are symptoms that are unexplainable that are caused by random inflammation that are not listed under typical symptoms of the disease. Everyone’s disease activity is different and inflammation can happen anywhere for no apparent reason. Bladder irritation isn’t the only type of mysterious inflammation I get. I also get it in my eyes, nose, mouth, esophagus, and stomach on a daily basis.

If I drink enough water, I can curb the burning most of the time. It sometimes still bothers me regardless. It’s not hard for me to drink a ton of water, as I seem to have unquenchable thirst, which is a whole other issue. The problem with drinking that much water is that I spend a decent amount of my day in the bathroom. When I recently gave a 24-hour urine sample, the final measurement was 4700mL, and normal 24-hour output is between 800-2000mL. My nephrologist actually asked me if I peed in the containers for more than 24-hours. I was pretty irritated with her. I’m sick, not stupid. Why would I continue to do something that is an absolute pain in the ass for longer than I have to? They do make over-the-counter pain relief for the burning problem, and I’ve got both Azo and Cystex on hand for when the burning gets out of control. The only problem with them is they are very irritating to the stomach which brings on another array of issues when I have to take it. I took some right now after eating some cereal, and now I am having acid reflux and pain from the gastritis, which means I can’t go back to sleep until the acid stops. I ate some food and took some antacid in hopes of protecting my stomach and it was a crap shoot as usual.

I could go see a urologist, and have them scope my bladder (which is extremely painful) and subsequently shrug their shoulders at me, but I really don’t see a point in going through all that. There isn’t a lot they can to for cystitis, especially when it’s not caused by an infection. They would probably diagnose me with interstitial cystitis, which can be a disease by itself and doesn’t have much of a treatment plan. I really do think that my cystitis is secondary to my other diseases and not a disease by itself. It is my hope that eventually the Actemra infusions will eliminate these random inflammations throughout my body and I can stop storing water in my hump like a goddamn camel.