I was probably supposed to write about stuff in separate blogs over the past few months but sometimes my brain just isn’t up for it.

I had a manometry and pH study to evaluate for acid reflux in September. First I had a big tube probe thing put down my nose which was really fun, and I had to swallow water in intervals over the course of half an hour. Then I wore a smaller tube probe thing down my nose for 24 hours which was pretty awesome and I felt really sexy. The findings were rather interesting and not at all what I expected. My pH study was normal except for one event of acid reflux. My manometry however showed that I have weakeness in my esophageal muscles and “pooling” of food/liquid when I swallow. So now I’m wondering if that pooling is what is reflux-ing, instead of acid. After I eat I feel stuff come back up and I have to clear my throat for an hour and its really annoying. I just feel like I have stuff coming up a lot of the time.

I also seem to be very mucus-y for some reason. It’s in my throat and around my vocal cords all the time and it’s very annoying and uncomforable, and I just cant seem to get rid of it. I’m taking mucinex but I can’t decide if it helps or not.

I went off all the stomach meds for the testing and didn’t go back on them for a while because I didn’t feel any different. I have started taking the carafate again once at night because I still have gastritis that refuses to heal and the pain from it keeps me up all night. Unfortunately lately the carafate seems to be making me really nauseated now and last night I almost threw up my dinner.

Recently I’ve been having a lot of headaches and neck pain and vertigo again, so my neurologist ordered an MRI and a repeat SPECT scan. We were concerned that the vasculitis is making a comeback. I had them done this past week and I do not have vasculitis again. However, it came up on the MRI that my Chiari malformation is 8mm. I’ve had doctors write it off and tell me I don’t even have chiari, so it’s been on the back burner for a while. My neurologist tends not to be very quiet or humble, but he was today on the phone, so I believe he is concerned. He wants me to do another MRI with a flow study to see if fluid is being trapped by the herniation.

I’m having bad sleep apnea episodes. I am going to investigate central sleep apnea. As soon as I start to fall asleep I jerk awake. And this can go on all night sometimes, and other nights just for a few hours, or a few minutes. The severity comes and goes. An ENT told me that if you know it’s happening then it’s not sleep apnea, but that sounds dumb to me. The strange thing about it is that it doesn’t happen to me all the time, it flares, but the flares lately have been constant. I know this problem with my esophagus probably doesn’t help either if liquid is pooling when I am trying to sleep. Also, I am still dealing with chest tightness that is probably costochondritis and I know that doesn’t help the situation either. I’m still sleeping propped up. I tried to sleep flat but it gave me heart palpitations for some reason. It just didn’t feel right. Sleeping propped up makes my body hurt but I feel like I can’t go back to sleeping flat yet.

I also am getting some cognitive testing in the next few months because I have some pretty severe cognitive problems. It makes it hard to write which is probably why I haven’t in a while. My brain feels broken.

I got the flu shot for the 3rd year in a row and I didn’t die, so I recommend it if your doctor recommends it. If you have autoimmune disease or have family or friends with autoimmune disease please don’t get the nasal mist, just get the shot. The mist can make certain groups of people sick.

Other than that, my joints are killing me lately. I’m having fevers and night sweats. My headaches, vertigo and neck pain have been bad. I still pee a lot. My septum is deviated and my nose is clogged all the time. I’m still on the boring reflux diet because of the gastritis. It hurts to wear clothes. My eyeballs are inflammed every morning. I need the Wizard of Oz.


Exercise. #lupus

“Do you exercise?”

Doctors ask me this a lot. They don’t seem to reserve their judgement, either.

Well, it depends on what you consider exercise. Something that’s not necessarily exercise for someone else could be considered exercise for me. Do I bust my balls at the gym? No. Do I run at the ass-crack of dawn every morning? No. Do I dress like Lance Armstrong and ride my bike in the middle of a busy street like an asshole? No. Do I carry in groceries? Yeah, sometimes. Do I walk the dog? Yeah, once in a while. Do I take the stairs instead of the elevator? When I’m feeling up to it.

I guess I don’t know how to answer their question. Do I do something that’s considered exercise by societal standards? Am I in an exercise class? Does what I do have a fancy exercisey name? Does what I do require a fancy exercisey machine?

Don’t take what I am saying the wrong way. I don’t dislike exercise. I come from a pretty athletic family. My mom has been teaching Jazzercise and dance aerobics my whole life, and I was able to learn proper fitness technique at a young age. My older brother was on the track and cross-country teams in high school, and has extensive knowledge in sports medicine. My younger brother just started a new exercise plan at the park and also hikes regularly, and he played baseball for the Y.

I myself use to be on the track team before the lupus days. The 400m and high jump were my main events. I wanted to do what my brother did, run for the high school team and do 5ks on the side. I didn’t get to do that, though. My freshman year of high school I had to get a PE waiver because I was sick, and so I had an extra academic class in place of PE, which meant extra homework. Oh boy.

It’s not as if I don’t try. There are exercise activities I’d really like to enjoy regularly, but I’m just in so much pain all the time that I can’t. I’ve tried tai-chi, and yoga, both which I liked well enough, but I was so sore for the next three days I couldn’t move. The pain affected my sleep. I seem to have this soreness from exercise that is exacerbated by Lupus inflammation.

I also have limits with my range of motion, and high blood pressure. Because of the damaged blood vessels in my brain, I can’t do anything that requires bending over without getting a migraine, especially during exercise that raises blood pressure. Sometimes doing anything even remotely exertional gives me a headache because it makes my blood pressure so high. When I already have a migraine, it’s so sensitive to my blood pressure that I can’t get up to go to the bathroom without making the throbbing worse.

The pain and soreness I get from exercising makes it even harder to do daily activities. I never seem to “get used” to exercising. The amount of inflammation people with lupus experience can actually result in significant muscle weakness.

I’ve explained all this to the doctors yet they still act like part of my problem with how sick I am is that I don’t exercise. Or that I don’t do what they consider exercise, rather.

So if anyone can explain to me how I am supposed to exercise with high blood pressure, a fever, daily migraines, and a disease that causes its own inflammation, and makes existing inflammation even worse, I’m all ears.

In the mean time I’ll keep exercising my patience.

More tests. #lupus

The short version:

I need a hug.

The long version:

I had an EMG/Nerve conduction study in my arms last week from a new neurologist, and the same test on my legs today.  During the first part of the test, the technician used a two-pronged device on several locations on my arm that sent electric charges through my nerves and also recorded the activity on the computer. It didn’t hurt really, just felt strange. She said it would feel like hitting your ‘funny bone’ and it kinda did, it just didn’t hurt like that would. During the second half, the doctor came in to do the test with the needle. He said it was like an acupuncture needle. I happen to think it was larger than that, but that’s just me. He inserted the needle into various points and sent an electric charge through it which also recorded nerve responses on the computer. The readings look sort of like the readings on a heart monitor, peaks and valleys. The legs were more painful than the arms. I wouldn’t even describe the arms as ‘painful’, just strange. For some reason, certain points on my legs close to me feet or where the nerves traveled to my feet were painful. It wasn’t unbearable, though. The needle half of the test was actually the easier part.  I’ll probably get the full results of both tests sometime next week. If both tests come back normal, that means I have no damage to my peripheral nervous system. From there I can investigate other causes to my neurological symptoms like central nervous system or spine.

My main complaints are pain and weakness. I can’t believe sometimes how I can just hurt. The Benlysta isn’t helping that at all. The weakness and clumsiness is bad, too. Sometimes I just drop things. My muscles let go. I’m noticing a gradual worsening of motor skills in my fingers. I can’t play guitar or type without the frustration of my fingers going all over the place (or nowhere), I can’t draw a straight line without my hands freezing up and getting ‘stuck’. They never do what I want and know in my head that I’m able to do. It’s incredibly frustrating to not be in control and not have an explanation yet.

Saturday I ran a few errands, and by the third store, I was in so much pain I wanted to cry. In between store #2 and store #3 I didn’t feel too horrible, or else I wouldn’t have gone in to the third store. I was a little tired, and a little in pain, but it was typical. It can hit so quickly. I often forget how bad it can get since I spend most of my time doing things that don’t expel quite that much energy. The benlysta isn’t helping that, either. And It’s not really a pain that pain killers help. I guess only people with lupus would understand. There’s something about it that’s so incredibly taxing. It’s like that one COPD commercial, an elephant might as well be sitting on me. Every movement becomes a Herculean effort. And you’re just suddenly overcome by this “If I have to feel this for one more moment, I’ll scream” or something like “I no longer wish to continue standing up.” And for me, it’s usually accompanied by some kind of hot flash/sweaty/feverish thing. Pushing through it is really difficult, and it usually takes a day for my body to recover after. When it happens it of course makes me extremely grumpy, but also I feel like my concentration has been completely zapped, so it makes that store trip practically useless since I can’t seem to even differentiate between my ass and my elbow, let alone whatever the hell it is I went in there to buy.

^This kind of problem I have poses a huge obstacle with my social life. No one my age gives a fuck, so they’re not going to make accommodations for me. I can’t do things other 20-somethings do. I can’t run around bars and stay out late and get hammered, and be at loud shows til the witching hour, and that’s pretty much all people my age are interested in doing. Me? I look forward to going to bed. It’s easy enough for people just to leave me out because I’m such a wet blanket on their plans. So I’ve basically stopped socializing, I’ve learned to be ok with it. Honestly, I got tired of being disappointed. Being lonely hurts less. 

My heart palpitations/shortness of breath/fatigue have been particularly bad lately. I haven’t been able to eat a meal without getting a pounding heart that lasts for hours after. The only thing I have to deal with it is Xanax, which I s’pose is odd since it’s not anxiety, but it is a little helpful. If I didn’t take xanax my heart would pound all day. No one can figure this one out either and I’ve been dealing with it for a while. It’s felt like an eternity. I’ve briefly talked about beta blockers with my doctors, but since my blood pressure isn’t high, even when my heart is going crazy, it just seems like it could cause me to have low blood pressure.

The neurologist who did my test is also sending me home with an at-home sleep study machine to test for sleep apnea. Part of me wonders if this is the cause of my heart palpitations, and possibly some of my ‘brain-fog’ issues. I know I have sleep apnea to some degree, because I have caught myself not breathing and ‘jolting’ awake, sometimes with a headache, sometimes gasping, sometimes heart-pounding. Certain medications make it worse, too. I can’t really take anything that ‘makes you drowsy’ before bed because it seems to make me stop breathing more noticeably. Occasionally I’ll have a night where I have it bad and so I just stay up. It feels pretty scary, and there’s no point in trying to sleep if you’re just going to wake up over and over because you stop breathing. I don’t know how often it happens exactly, and if it’s enough to warrant a CPAP machine. It would be nice if some of these symptoms could be resolved as easily as wearing a breathing mask at night. I’ll do just about anything at this point. I’m pretty desperate. I’ve altered my eating habits in hopes of weeding out any toxins and allergens that could be making things worse. Preservatives in particular, which really aren’t good for anyone, are a huge trigger for me. It’s a pain in the ass because they’re basically in everything that isn’t made by my mom (<3 u mom). That means no canned or frozen food, or powdered things, or meals from a box. It also means no restaurant food, because you really don’t know what bullshit you’re getting from there. I haven’t been able to exercise, which has been pretty terrible, considering I have an athletic personality and would probably be doing all sorts of sporty things if not for the fact that I can’t catch my breath (among pain and energy).

All in all, I continue to be frustrated and mystified by the amount of time going by without an explanation or treatment. This shit takes forever. That’s the hardest part I think, the waiting. For a doctor, a month has gone by, but for a patient, it’s more like 43,829 minutes.