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.

Hello, March #lupus #blog

On Monday I had an ENG done. I was pretty worried about it because I knew it can cause migraines and vomiting. An ENG is a test for your inner ear, and also your eyes, to check for causes of vertigo. I get dizzy when I look down for prolonged periods of time. It seems like it’s something that flares, because some weeks are worse than others. I’ve never been a person that got sick from carnival rides. I play video games regularly and have never had a problem with getting dizzy from them. However, I do get dizzy from riding elevators, oddly enough. They’re looking to see if I have any damage from the lupus in my inner ear.

The test can take up to 90 minutes. For the first part, I had to wear headphones that played a clicking sound in each ear pretty loudly while I turned my head to the left and right. I had electrodes on my chest and neck. The next series of tests involved following a red dot on a screen in the dark. I had electrodes on my face around my eyes. I didn’t have dizziness from either of these tests. The technician then had me sit up and helped me to lean back and turn my head quickly. This made the blood rush to my head, but I did not seem to get vertigo from this either. I also had to lie down on one side in the dark, and then switch to my other side, which also did not cause a problem.

So far no vomiting, and no headache.

The last part of the test was a bit more difficult. I still had the electrodes on my face. They had me lie down on my back and they irrigated each ear with cold water, and then warm water for 30 seconds. The first irrigation was the worst. The cold water in my left ear made the room spin. After each irrigation, I had to sit in the dark. I had to hold onto the chair. The last 3 weren’t as bad, and the warm water bothered me less than the cold water. The warm water feels hotter in your ear than it really is. Having water shot into my ear in general was uncomfortable. It made me feel a little panicked. I was glad when it was over.

I did not end up getting a migraine or vomiting from having this test done. I’ve had a sore throat since I did it, but I don’t know if it’s related at all. I’ll get the results when I see my neurologist.

I stress dosed my hydrocortisone to support my Addison’s Disease for this test. I always have a delayed stress reaction after difficult tests that night or the next day. It usually makes me feel shaky and lightheaded.

On Thursday I went to see an Infectious Disease specialist. My rheumatologist referred me to one so they could run some tests to rule out infections like Valley Fever, mosquito-born diseases, and tuberculosis. My rheumatologist is checking these for two reasons, to make sure I don’t have anything that could be causing my current symptoms, and to make sure I’m clear to start a new treatment. Being on other immunosuppressive drugs in the past could have left me more susceptible to these types of infections.

The ID specialist was nice enough. His office was really hot though. My face and my chest blew up with a blotchy red rash. My rashes come up so easily now. I have at least one episode every day. Doctors’ attitudes change when they see my lupus in action like that. It seems like it makes them realize the gravity of my disease activity. Sometimes I feel like some doctors don’t take my lupus very seriously, or they just don’t realize how ill I really am.

Prior to my rash making its appearance, he had talked about a couple vaccines he thought I should have. He mentioned the pneumonia vaccine. I’ve had a flu shot but I’ve never had the pneumonia shot before. I believe the pneumonia vaccine is good for 5 years. I didn’t object to it, I just didn’t realize I was a candidate for it, as it has never been recommended to me before. Being the age that I am, he also mentioned the HPV vaccine, and he seemed surprised that I had not already received that series of vaccines. That has never been recommended to me before either, and I have been going to doctors regularly for quite a while. I am for vaccines, but I am not comfortable with the HPV vaccine. It’s too new, I have lupus, and I have heard nothing but bad things about it. I did a little research online, and a common side effect is fainting.


I’m sorry. I’m not doing it. I don’t need to do something to my body that can’t be undone right now. My life is already upside down because of all my health problems. I don’t even have everything diagnosed yet. And sleeping around isn’t a top priority. Its not a risk I can take. I feel like at this point I’ll be lucky if I make it to 30 without catastrophic organ damage, or other irreversible complications from lupus.

Anyway, back to my point. The doctor got real quiet about his vaccine trip when my rash came up. It was a pretty violent rash, too. I think he felt a little bad after that. He was selling it so hard, and kind of judgmental about it too. I’m not going to worry about it right now. I’m gearing myself up for the next treatment plan, whatever it may be.

The ID specialist wrote me a prescription for a bunch of different tests, so on Tuesday I’m going to the hospital to get some blood drawn.

I’m also going to the cardiologist that day. I’m having high blood pressure even though I’m on blood pressure medication. At this point, I can’t even eat crackers without the tiny amount of salt sending my blood pressure through the roof. I’m considering asking them to do an ultrasound on my heart again to make sure there isn’t lupus activity there, and I also might ask for a referral to a nephrologist to make sure there isn’t a problem with my kidneys causing the high blood pressure. My urine always tests normal but I think it would be good to get some other tests run. I am concerned that I’ve had this sudden high blood pressure for a few years and no one is looking into why it’s happening. My blood pressure used to be great. It’s effecting what I eat and how active I am able to be, and it feels horrible. It certainly isn’t helping the headaches.

This week I am also going to see a dermatologist about my rashes. I might have to get some biopsies done. Then my rheumatologist will use all this information from the other specialists to figure out what kind of disease activity is going on so he can pick the most effective treatment for me.

When I talk to my neurologist about my ENG I am also going to mention that I am getting headaches when I chew, and I am also having pain in my face and nasal cavity that seems to go with my headaches, but does not feel allergy related in any way. I am also going to mention that while the imitrex is sometimes helpful for migraines, it makes my blood pressure go up and causes me to be dizzy.

My aunt flew in from Boston this week, and I saw her on Friday. I was pretty worried about spending time with someone who had just spent time in airports. I just had to trust that she was good at avoiding germs. There are a lot of things that I have to spend a decent amount of energy worrying about that other people don’t think twice about. It’s exhausting. Last time I had a flu I spent 5 days in the hospital, and my white blood cell count almost bottomed out. I didn’t even know I had lupus yet. It makes me worry about what would happen now, since I would consider my disease to be even more active now.

My current symptom check-list looks like this:
-Hot red itchy rashes
-pain, rashes, swelling and loss of range of motion in joints, particularly hands, knees, and neck
-constant heart burn
-high blood pressure, even with medication
-heart palpitations with no cause
-required bland diet
-chronic migraines
-headaches and jaw pain from chewing
-nasal and facial pain with some headaches
-dizziness when I look down
-chronic constipation
-burning when urinating with no infection
-eyes are light sensitive
-skin is sun sensitive
-drinking twice the daily recommended amount of water
-lower back pain
-muscle weakness, pain, and tremors
-numbness, cold, and discoloration in feet
-hair loss
-loss of sleep, usually from pain or heart burn (4am)
-dry irritated eyes, can’t wear contacts
-trouble with concentration, memory, and confusion
-trouble swallowing

That’s the thing about lupus. No two cases are alike. My rheumatologist has to make sure I don’t have other disease activity besides the lupus. I am hopeful that I will be on a new treatment in the next couple months. I’m not expecting a miracle, but a shorter list would be nice.

2 weeks post-Rituxan #lupus

Well kids, I’m 2 weeks into that magical-yet-guesstimated 3-month time period it supposedly takes for 4 weeks-worth of cancer drug to put Lupus in remission. Is that a run-on sentence?

Anyhoo, I have a really bad headache, as usual. I’m still getting fevers every day. I actually think I’m in a flare of sorts. I’m not due for my “lady’s days” (as Ray Barone lovingly calls it) for at least 10 days, so I don’t think it’s a hormonal flare. Perhaps that’s TMI, but you should all know by now that this is a medical blog, and I spare no personal detail because someone might be able to relate. I’ve been waking about at about 4-5am aching everywhere, especially in my glutes. That’s a big pain spot for me. It’s fun waking up at the crack o’ dawn (literally) because your ass is cramped.

I think the brain fog is letting up a little. I haven’t been my comedic self in a while. I couldn’t find my words for months. I’m not really sure what makes it come and go. I wish I knew, because when it happens I feel like I can’t do anything. I can’t get out of my own way or do things in an order that makes any sense. When I was writing during the brain fog I just felt like it didn’t sound like me, it didn’t come out the way I wanted it to. I took a break from hat-making which is a big hobby of mine. I have a couple blogs I’ve been meaning to write. I’m hoping to have the energy to work on those things in the coming weeks.

I’m getting pretty tired of the fevers. I don’t know how I’m going to get through the summer heat and have a constant fever at the same time. I can’t even sip my coffee in the morning without triggering an episode of the sweats. It’s obnoxious. Its also very irritating to my already-irritated skin. I’ve been alternating between rx-strength ibuprofen (Duexis) and tylenol to help keep them down. They both wear off rather quickly. I do get episodes of the chills too, as anyone with a fever would, and that can be annoying as well. But it’s not as prominent as feeling too hot.

I’ve failed to include Addison’s disease and how I’ve managed it during and after my Rituxan treatment. I think I will write a separate blog about that within the next few days, so long as my brain allows it.

It doesn’t burn when I pee anymore. No one told me Rituxan makes it burn when you pee, so this is me telling you now. If you’re having that problem, it’s still a good idea to get a urine test done just to make sure, but also don’t be alarmed if it’s happening to you. Cystex is a great over-the-counter treatment for the pain. It’s an NSAID, so be careful with it.

I’m going in to the Rheumatologist on Tuesday so they can take blood to see if my white cell count is back up. I’ve stayed out of crowds for the most part, save a few trips to the store. I noticed when I’m out my throat glands get really sore. I attribute it to more of a flare than an immune reaction to being in public, though. It’s almost like my whole body aches along with it. Sometimes I wonder if the vasculitis is effecting more than just my brain.

My headaches have been a bit different lately. I’m noticing a pattern that my nasal passages swell at the same time that my headaches come on, as well as pain in my teeth and neck/back area. It’s kind of weird how I can feel that it’s all interconnected. The gland soreness in my throat goes with it sometimes, too. I’m still treating it with Duexis and Fioricet. Since giving up the Nifedipine, I think the head pounding is less intense, but the pain and frequency are the same they have always been. I’m back to having blue feet without nifedipine, but it wasn’t worth the pain I was in. While on nifedipine I felt like I could tolerate salt a little more, which is important for the Addison’s, and now I’m back to being intolerant of it, which sucks. It has made my diet so strange. I feel like I can’t eat anything that hasn’t been prepared at my house, because food is just so damn salty.

I’m trying really hard not to hurry these next few months, because I know it will only make them drag by slower. I’m not exactly anticipating a remission either, because I don’t want to be disappointed. Would be nice to kick the daily headaches, though.

One Week Post-Rituxan Completion #lupus

My doctor called me Wednesday to tell me my white blood cell count is low, and she wants to draw blood in a couple weeks to see if it’s gone back up. It’s at .9 right now (translates to 900, and normal range is within 4,500 to 10,000 cells/mcL, please correct me if I’m wrong). It wasn’t unusual for my WBC count to dip a little low while on the Benlysta, so it’s not surprising to me that the Rituxan could be doing the same. In the meantime, I can’t really spend time in crowds. My family is taking extra precautions in cleanliness when coming home from public places. I have to be sure to use Neosporin every time I get a cut, and I can’t eat uncooked fruits and vegetables.
I have some yellow spots in my throat for no reason. I’ve had it once before. They hurt. It’s probably some kind of cold virus/sore throat-type-thing that I wouldn’t normally be susceptible to if my WBC count wasn’t low. Last time, they just went away without having to go to the doctor. I’m hopeful it will clear itself up again. I don’t want to go to the doctor and be around more sick people. I feel ‘fine’ otherwise, I don’t feel like I have a cold.
I’m still running the same fevers I’ve had the past couple months. It’s been pretty obnoxious. Ibuprofen and Tylenol help, but not 100%. I can’t stand to feel the slightest bit of warm air without getting hot and sweaty. But at the same time, I’ll have a couple hours where I have the chills and I can’t get warm. I change my clothes a couple times a day to try to accommodate my body temperature.
My underarms aren’t irritated anymore for the time being. I haven’t had the burning rash on my neck anymore, either. My skin still seems kind of irritated and sensitive overall, but there is no rash. I am sun-sensitive as all people with lupus are, but I feel like it’s been more bothersome lately. I absolutely can’t stand the feeling of the sun on me. It makes me feel sick. It makes my pain so much worse.
I’m having a hard time getting through the day energy-wise. By the time the evening rolls around, I’m too tired to occupy myself, and I get really bored. I’m not much of a ‘nap person’, I always get a headache from naps, and sleeping during the day doesn’t help my fever. I try to tough it out until about 10pm so I am still sleeping my normal hours. It’s been hard because I’m losing sleep between 4am-and 7am because of headaches, body aches, or stomach aches. They like to get me up early, and by the time I can figure out what to do for it, by the time the medicine kicks in, I’m not tired enough to go back to sleep. I’m getting 5-6 hours of sleep at the most.
My urinalysis came back clean. I’m pretty happy about that. So it’s just the Rituxan causing burning when I pee. I’m actually starting to feel better regarding that as well. I’m obviously not very shy about talking about it, am I?
The headaches are still bad. My neck and back have been pretty tense too. I wish I could get a massage but the increased blood flow to the area makes my head hurt more.
My blood pressure has also been a little high. Not sure what that’s about. It’s pretty unusual for me. I’ve been waking up to heart palpitations. Whenever I eat a meal I get them too, even though I eat a low-salt/preservative-free diet. Just another bullshit symptom, I guess.
My brain is still in a terrible fog. It let up a little today, which is why I’m able to write. Yesterday was really bad. It gets so bad sometimes I feel like I can’t do anything. Everything becomes really overwhelming. Sometimes it makes me want to cry because I just feel so ‘all over the place’.
I guess I’ve just been sad lately. I’m tired of the ‘daily grind’. I’m bored as hell because I don’t usually feel well enough to occupy myself. I feel like Bill Murray in Groundhog Day. I’m just trying to hang in there until the Rituxan does its thing.

It hasn’t helped that my internet connection is shit because of the World Cup breaking internet streaming records. Yay sports, but I’ll be glad when it’s done because I miss writing and talking to people. The internet is my social life. It is for a lot of sick people. I can’t hang out at bars, or whatever people do these days, so I hang out on Facebook. It helps me feel a little more normal. As a rule, people don’t make accommodations for me so I can hang out with them. My health gets in the way of plans and no one really offers to do activities that would be easier for me, they just leave me out instead out of laziness. Maybe social media seems trivial or irritating to other people, but I’d be sad without it. I can still talk to people and not have to worry about ‘making plans’ or whatever. I’m not afraid to admit I’m lonely, but I’m also not shy about pointing out that people suck, and most of the time they disappoint me, and that dealing with being lonely is easier than disappointment. It’s been a conflicting position to be in.