2018 – Year of the Vestibular Migraine #ChronicLife

Vertigo has been a mainstay in my catalogue of symptoms for about 6 years now. Up until last November, I could only ever describe it to my neurologist as something that happens when I look down too long, and it was always coupled with neck pain. It would get worse in the summertime, and I would have to wear a soft neck brace to get relief, and also as a reminder to not look down. I really hated wearing that thing, especially when the weather was hot. While it relieved some of the vertigo, prolonged use would tend to give me a tension headache, so I’d have to make sure I was wearing it for short periods. Car rides, especially stop-and-go traffic could aggravate the neck pain and vertigo, which seemingly go together. Apart from some limited range of motion, my neck x-rays have not shown anything abnormal.

It was quite debilitating at times, and I kept bringing it up to doctors, only to have it blown off. I had some testing in 2014 called an electronystagmogram for inner ear problems which came back “normal”. They spun me around, poured water in my ears, made me watch red laser dots that spin around. They did their best to make me sick, and it didn’t. Not at that point in my vertigo adventures, anyway.

The pattern of my vertigo flares became fairly consistent. It seemed like I would get a bit of a break from it when the weather got cooler. I didn’t seem to need the neck brace as much, sometimes not at all. Usually between December-March it would lay low for a while. Then the weather would start heating up, and by June it would become a daily problem again. The neck pain never subsided though, so there would still be days where I needed the neck brace.

Not being able to look down without getting vertigo and neck pain has been a huge problem for me. I’m an artist, and I have to look down at my work. I can’t read books. I can’t get comfortable, there is no suitable reading position for me. If you think of all the activities that require looking down at something, even slightly down, you might realize what a hassle this can be.

Things like Drammamine and similar drugs never helped me. They just made me tired. So I just did what I could with the neck brace, and figuring out different ways to do art or read or work on music.

This was the extent of the vertigo up until November of 2017. Then something happened to me one night and I haven’t been the same since.

In the middle of October 2017, I got the flu shot. The rheumatologist gave me the extra-strength formula that they give to the elderly and the immunocompromised. I’ve received the flu shot in previous years, but I don’t believe I’ve ever had that strength before. I can’t be sure how relevant the flu shot is to the story, but I just wanted to make sure I mentioned it. I do remember having a day not too long after receiving the shot where I randomly vomited once.

I had a night in November of last year that was very strange. I can’t really recall how I was feeling before it happened. Sometime after eating dinner, I suddenly had the worst heart palpitations. I was terribly uncomfortable. I was sitting in my usual rocking chair (at the time, that was all that my body would tolerate as far as furniture goes) and I suddenly felt weak all over. I couldn’t stand up. I had this really bad pain in the back of my head, unlike anything I’ve felt before. It became really hard for me to explain what was happening. The vertigo hit me really hard. Everything in my right eye went dull and grey. I was really lightheaded and shaky. The “motion” feeling of the vertigo was really intense. My mom checked me for stroke signs, which I had none. It started to subside after about 2 hours.

I don’t really remember how I felt the next day. I guess it’s all blurred together now. But I do remember starting to notice certain things would set this type of episode in motion again. Salty food, caffeine, and the most difficult thing, being upright.

Being upright, like sitting in a chair or standing for any length of time would cause the pain in the back of my head to start. Then the other symptoms would follow. Shaking, chills, vertigo, lightheadedness, and the sudden need to vomit if I didn’t immediately change my position.

“Oh god I can’t sit here” became a frequently-used phrase.

This new “syndrome” brought me to my knees. I was stuck on the couch, on my side, because that was the only thing that seemingly didn’t bring on these episodes. I still attempted to continue doing regular activities. But they made me sick almost immediately. Showering was really hard, sitting or standing.

Because I was so limited in the positions I was able to be in, and the activities I was able to do, this put my stomach and GI tract in flares. I have gastroparesis, so my stomach does not empty at a normal rate, it is very slow. And I also have a hiatal hernia which causes my lower esophageal sphincter to be partially open all the time. Basically, food can go backwards, and without the help of gravity and activity, it gets much worse. So I was feeling like I had partially digested food in my esophagus every time I ate. Liquids also caused me to have the same problem. Sometimes liquids even made it worse.

After the first episode, I went in to my neurologist with my mom to explain it, and it got blown off as a migraine. He is a stubborn asshole sometimes, but I stick with him because he knows more than any doctor I’ve ever met, and he was the one that got to the bottom of my brain vasculitis. For all I know, he saved me from having a stroke.

After getting blown off, I dealt with the episodes for a while, while my mom and I tried to figure out what helped, and what triggered the episodes. I stayed away from doctors and hospitals for a bit because a flu was going around that was killing otherwise healthy people. I wore a vog mask everywhere I went. I was terrified of everything at that point. The vertigo, the flu, and whatever my body was doing.

I remember watching the winter olympics and just being totally consumed by head pain and the other symptoms. It always became worse later in the day, and by bedtime it was intolerable, which is why it was bedtime.

At this point, these “episodes” caused a variety of weird symptoms. They don’t sound like symptoms that go together, but I knew they did, they would all happen at the same time and I could just feel it.

  • searing pain in the back of the head
  • nausea (vomiting if I didn’t move my ass)
  • weakness – overall body weakness and my knees buckling
  • shivering, even if I wasn’t cold (enough to make my muscles sore)
  • chills
  • confusion
  • memory loss
  • sensitivity to lights and sounds
  • vision problems – things getting ‘greyed out’ and spotty

All of this was brought on by my body being upright, or having salt or caffeine, which I would imagine is related to blood pressure and posture.

One of the things I began to realize is that the xanax I took occasionally for anxiety helped my symptoms, and not just a little. It helped a lot.

My next trip to the neurologist was finally fruitful, in fucking APRIL. It took that dinosaur til April to come up with a diagnosis of Vestibular Migraine. (Side note: we have the kind of doctor/patient relationship where I could call him a dinosaur) It was actually a great appointment, too. He asked me outright, without me having to hint, if the xanax helped my symptoms. When I said it did, he recommended Klonopin, which has a longer half-life. I started on 0.5mg. He also mentioned a doctor somewhere in the bowels of Los Angeles that uses Effexor to treat vestibular migraines, but after hearing about having to open capsules and count pellets, my mom and I decided to just ask my GP about it.

Klonopin has anti-vertigo properties and is often used as an off-label treatment for vestibular syndromes, including vestibular migraines. When I started taking it I definitely noticed a difference right away. It wasn’t an “I’ve got my life back” difference, but I felt like there was finally a light at the end of the tunnel. I was able to do some things again, in moderation. I could sit a little, stand a little, eat a little salt. I didn’t feel like I was suddenly going to projectile vomit if I stood or turned my head a certain way. I felt so hopeful. But I still needed more relief in order to get back to where I was before all this came about.

I started the Effexor in May, per my GP. I think. Somewhere around there. I started at the typical dose, 37.5mg. Over the next few months, I worked my way up to 150mg, but it wasn’t easy to do. It was terrible on my stomach. There were a few days after I titrated up where all I could eat were Jell-o and some other geriatric nonsense. Also, oddly enough, it seemed to be giving me more headaches. There was no improvement in the other symptoms. It made me a zombie. I couldn’t work on art or music all summer, which was also in part due to flaring from the heat. But the Effexor made me feel like I couldn’t stay awake during the day. I also experienced more depression at night, much worse than what I typically deal with. I felt like it also affected my judgement, I hung on to a toxic friendship for a lot longer than I think I would have had I not been on Effexor. It’s hard to know for sure, but I really felt like this was the case.

My mom, my GP and I decided it was a good idea to wean off, since the three of us couldn’t see any benefit at all from it. For a few weeks I kept cutting the dose by 37.5mg, until I was completely off. I should mention that I didn’t spend much time on the full 150mg dose. The headaches from it were too much. By the middle of October I was completely off Effexor. I did experience the withdrawal effects. I had mood swings and depression in the evening, and crying spells. I am oddly thankful for the crying spells though, it’s been a nice release, and I can’t give Effexor 100% credit for them. I think I needed to let some shit out, too. Sometimes I feel like I can’t cry even though I want to. I guess I am a bit guarded with crying considering it gives me migraines. But crying needs to happen and I’m thankful when it does. Weird, I know.

While weaning off the Effexor, another visit to the neurologist prompted an increase in the dosage of the klonopin. I now take 0.5mg twice a day. It has definitely made me feel more functional. I am not without vestibular migraine flares. In fact, I am in one right now and I am not sure why, but there could be a lot of factors, from lupus flares, to stress, to the environment. But the important thing is I no longer feel afraid of them. I know what they are, why they happen, and a few things I can do when they happen. I am not without frustration when I flare, but I am able to handle it now, physically and mentally. I went through a lot of emotions before these “episodes” had a diagnosis, but the biggest one was fear. I was so afraid of them. I felt like I lost total control of my body. I no longer feel that way. I feel at least partially in control, which has been a beacon of hope. It’s been a long recovery, and I don’t know if vestibular migraines are a “forever” disease. Maybe someday it will burn itself out. I’ll be crossing my fingers, but in the mean time I will just keep pushing forward.

Can you get Raynaud’s everywhere? #lupus

I have Raynaud’s Phenomenon. Blood vessels respond to temperature change by spasming and changing color. My feet are especially sensitive, and are ice cold most of the time due to inadequate blood flow. My hands get pretty cold too, which doesn’t help the pain and stiffness.

As time goes on, I am noticing more and more places on my body that are ice cold. The Raynaud’s that is in my feet has moved up to my ankles. I get ice cold spots on my shoulders and hips. Also, my knees get pretty cold from time to time. I know that normally a person wouldn’t have a lot of body heat coming from their joints, but to be cold as a corpse is a bit odd. Even though the Still’s Disease gives me fevers and hot swollen joints, I still have periods of time throughout the day where parts of my body are ice cold, and I also get the chills. It’s hard to tell if one causes the other or if they both just happen at the same time each day.

I also tend to get livedo reticularis when my parts are cold. If you’re not familiar, it’s a purple lacy rash. It is caused by blood vessel spasms under the skin, which sounds a lot like raynaud’s.

I’ve been told by one doctor that I have “vasculopathy”, which is really just a blanket term for blood vessel disorders. It doesn’t explain the how or the why, or what to do about it.

In the past I’ve tried nifedipine for the Raynaud’s, since it’s especially bad in my feet. But the problem is that it gives me headaches. Anything that changes the natural state of my blood vessels, whether it be dilation or constriction, seems to give me headaches, and that unfortunately includes food. I’ve had to give up cheese and bananas because they trigger migraines. Cardio exercise is also difficult to do without getting a headache.

I do take a calcium channel blocker to lower my blood pressure by a few points, because anything over 120/80 is terribly uncomfortable for me for some reason. The doctors always blow it off as “not that high” but to me it feels like I’m on crack. Doesn’t that mean something’s wrong?

I feel like I am dealing with Raynaud’s Phenomenon everywhere.


January-March stuff #lupus

I’ve had some testing done and some medication changes so I figured I’d write about it. I’ve been really struggling with brain fog lately, so enjoy my word soup.

Back in October or November, I started having an itchy patch on my right nipple. The skin became hard and I was quite worried about it. I already knew from a previous  ultrasound that I have dense breast tissue, which is painful and doesn’t have a treatment. But I was alarmed by the new symptom along with an enlarged sore lymph node on my left underarm. I requested another ultrasound where they looked at my breasts, and also my underarms. The ultrasound didn’t show anything unusual but I wasn’t satisfied with that test alone. I pushed for a mammogram, which they denied at first because I am under 40, which begins my rant:

With all the breast cancer awareness events and t-shirts and pink ribbons everywhere all the time, why do I have to beg for a mammogram? Because 26-year-olds don’t get breast cancer? They gave me such a hard time about it, and then when I finally went to get it, they told me “Don’t come back until you’re 40.”

My symptoms really scared me, they lined up with Paget’s Disease. I just had to know for sure that everything was normal. And it was, aside from finding out that I have painful dense breast tissue growing all the way up into my armpit area. Now I know why I hurt so much there all the time. And the lymph node is nothing, just an enlarged angry lymph node, probably from the lupus.

Dense breast tissue does raise your risk for breast cancer and I will be pushing for another mammogram when I feel like I need to, regardless of what a snooty desk clerk tells me in between smacking her gum and biting her fake fingernails. I urge anyone else who feels something isn’t right to do the same.

So, that’s it. Just sore boobs. Oh goodie.

I recently went to get a second opinion on my lupus treatments and was told I was being treated “conservatively” and the doctor decided it was worth a shot to raise my humira dose from twice a month to once a week. I’ve been doing weekly injections for a little over a month. I think I feel more tired. My pain levels are the same, they might even be worse. My elbows have been pretty bad, and recently my upper back and neck. I have the chills during the day, and I get really hot at night. I think I had that before but it seems a little worse and a little more predictable now. My lower GI pain is about the same. I seem a bit rashy lately. I did notice that being in the sun doesn’t seem to make me sick right away like it usually does, but also it’s not quite summer yet. It’s only been a short time since I increased the dose, so we’ll see what happens when more time goes by.

I went to see a new GI doctor that was recommended to me by my other new doctor. He said that my other GI was a “procedurist” and that this new doctor was good with motility issues. She diagnosed me with “functional dyspepsia” and explained that there are too many nerve signals being fired off between my brain and my stomach. She is treating me with amitriptyline. It’s an antidepressant but in small doses doesn’t alter mood and can help stop some of the excessive nerve signals. I started off at 10mg about a month ago and increased it to 20mg a few days ago. So far I feel a lot less of the gnawing gastritis pain at night which has been nice because I was losing so much sleep. I don’t really think much else has changed but I have to give the 20mg a chance to work. I’m really hoping eventually I will be able to eat some regular foods again. I’m still on the bland diet and it really sucks.

I am still having trouble swallowing, and clearing my throat all the time. I am still accidentally inhaling food, and feeling full too quickly.

I’m giving mindfulness a try. In my interpretation of it, it’s just teaching yourself how to give your mind a break so that you are not overloaded with stress. Some people practice traditional meditation but that can be difficult and uncomfortable for people with chronic pain and focus issues. So far I am figuring out when I need these mind breaks, and doing something tactile and completely focusing on that one activity. I was told to try something like petting my cat or rubbing lotion into my hands. It’s really hard to do it and to focus on it without thinking about actually “being mindful”. My brain likes to go 100 miles per hour sometimes. I think between those two activities, hand lotion one seems to be easier to focus on, since it feels more sensory (but without sensory-overload). Some people concentrate on their breathing to be mindful, but breathing exercises usually stress me out. And my hands get dry anyway, so the hand lotion is a good choice for the time being. I hope I can get a grasp on it and take my stress levels down a bit. Most of my stress is from pain which is something you can’t separate yourself from, but if I can teach myself not to focus on it for even a short time I think it could help.

I think I experience mindfulness when I listen to music sometimes, because I become completely engrossed in it. But music isn’t always appropriate when you feel like you are having sensory overload, and lately I’ve had more problems with feeling “sensed-out” so it hasn’t been a good solution on some days. I started to feel like music was giving me anxiety and I’ve never experienced that before, and it sucks because it has always been a good distraction throughout my pain journey.

I wonder if daydreaming counts as mindfulness since I do it a lot and completely forget where I am, ha.

I still have costochondritis. I can’t really wear a bra much anymore. I have to shower before bed because my rib cage is so stiff. I’ve been putting voltaren on the area for about a year now. I don’t really feel like it does much, to be honest. I feel constricted in my chest all the time. And when I sit in certain positions it gets worse. The hiatal hernia probably doesn’t help either. I sat on the couch for a bit recently and ended up feeling like someone was tearing a hole in my diaphragm for a few days after. I have to sit on more firm surfaces, but at the same time I have to have a cushion under my bony ass or else it goes numb. It’s always a contradiction with this disease. I miss being able to sit on my couch. The problems I have with my body are stupid and frustrating.

My brain fog seems to get worse every year. I am looking into treatments for that and trying to decide if I want to put myself through expensive grueling 6 hour testing or not, so they can tell me, “Yup, you have brain fog.” We’ll see.

I had a sore throat for like a month for no reason, that was fun. Thanks, Still’s Disease.

I suppose that’s about it




What Chronic pain does to people #lupus

Sometimes when my brain fog is bad I find myself staring into the internet.

One of the websites I visit regularly is pinterest. My feed happens to be full of hairstyles, makeup, and clothes most of the time.

I think the average person doesn’t realize all the things that pain can take away from you, I think they take for granted all the little things they do every day that they don’t even think about that can make a person’s pain worse.

I’d like to get a hair cut. Right now I have long straight fine hair, and I think about cutting it shorter and styling it differently because I’m bored with my hair. I’m bored with wearing it in a bun. I’m bored with it hanging in my face when I try to wear it down. But I can’t cut it. I can’t take the chance that the new style routine will be too painful for me to do, because it will be years before it’s grown out again. I can’t take the chance that a new hairstyle will be annoying, because believe it or not, having hair actually causes me pain. I can’t wear it down because I can’t shake my head to flick it out of my face. My neck hurts so bad most of the time it hurts to wear my hair down. I get stuck wearing it in a bun because sometimes I just can’t take the sensation of hair. I just want it off me.

As I scroll down through pinterest I see cute clothes I could never wear just because I know my skin couldn’t handle the material, or there would be no comfortable way to sit in that skirt, or something is too fitted. Fabric that isn’t stretchy enough can change your posture. It can change your range of motion and the way you move. A person that’s not in pain probably doesn’t realize it, but on days when my pain is bad I can’t wear a plaid shirt because they have no spandex at all. And shoes are a whole problem on their own. I miss dressing up in something cute and feeling cute but most of the time it makes my pain worse to do so. Most of the time I can’t even wear a bra. I’ve gotten to a point where I can’t even wear sports bras. Everything feels so confining, like my movement is being restricted.

I miss wearing makeup. I genuinely enjoy the art of it. But my eyes hurt all the time. I feel like I’ve become allergic to everything. If I can wear my contact lenses at all, it’s only for a short time.

While complaining about these things sounds vain, it’s all a form of expression that I feel is now entirely controlled by my pain. It’s one less part of my life where I’m in charge. I don’t get to put forth my personality through my appearance the way I would like to sometimes. There are some days when I don’t really care, and other days where I get tired of looking how I feel. It doesn’t bother me as much as it used to. But I still have days where I miss being ‘girly’.

More on self expression, I am an artist and a musician, and pain has complete control over those things too. And I’m sure healthy people don’t understand why I “let it take control” but that’s because they’ve never dealt with it before. There are some kinds of pain you can’t just power through. My pain in my hands has robbed me of my dexterity and completely effects my ability to play the guitar. When I draw, things aren’t loose and clean. While I know the skill level exists in my brain, it doesn’t always reflect in my work the way I would like it to. To add to it, the postures you must be in to do this things add to the pain which robs my concentration, and eventually my desire to continue, and sadly sometimes my desire to even begin. These things that bring me happiness and a sense of accomplishment also bring me anger, frustration, and disappointment because of the pain. I try to look at the bigger picture when I work on something, the end result is always being proud that I completed something despite the pain, but I am often not allowed to enjoy the journey.

Living in a world where we are inundated by advertising, it’s easy to come across a show, or a concert or an event you wish you could attend. But my first reaction to those things isn’t excitement anymore. It’s anxiety. It’s “will I be able to get to a bathroom easily”. It’s “will I be able to sit down”,”how loud is it going to be”, “how long is it going to be, “how many flashing lights will there be”, “will they sell something I can eat”, “how far away will we have to park”, “am I even going to feel good enough to go that day”, “is it going to be in the sun”. It ends up being a lot of pressure and disappointment. The same can be said for holidays, classes, and social gatherings (the rare occasion that I get invited to something).

Pain feels like a punishment when you are not allowed to do and be the things you want to be.

Pain has broken my brain. It impairs my ability to concentrate, because it steals away my focus. I can never focus on anything 100%, because a percentage of that always goes to pain, and I can’t shut it off. Not to mention the fact that pain also costs energy, which is also required to focus. To put it in words the average sheep can understand, pain is an app that is always running in the background, taking up memory and battery life, and so you can’t perform tasks the same way or at the same efficiency that a person with no pain can.

As far as sucking it up goes, I do. I do things that cause me pain every day, normal everyday things, and I pay for it. I must allow myself a recovery period if I don’t want to put myself in the hospital. The stress tends to make my immune system attack more things, which leads to more pain, and possibly permanent damage to whatever organ it favors that time. I have permanent damage to my blood vessels, joints, GI tract, and adrenal glands and they are each a disease by themselves that I  have to deal with now. Each causes their own pain and problems, and sometimes treating one makes another worse. I am very overwhelmed by all of it.

Sleep. It’s hard when you can’t sleep because of pain, because you are too tired and in pain to occupy yourself. It becomes a staring contest with the clock and fighting the worrying that one tends to do when they are awake at 3am. The next day you are in more pain because when you haven’t slept, your brain perceives pain more intensely. Now you’re pushing yourself to get through the day since you’re tired and haven’t slept, and you’ll be lucky if this isn’t the start of a new pain-sleepless-pain cycle. Then you wander around the grocery store feeling like a bucket o’fuck, not remembering why you’re there in the first place, and you panic because the lines are too long and the packaging is too bright and you can’t remember where anything is or even string two complete thoughts together.

Pain causes anxiety for a few reasons. When you’ve been in a lot of pain for a long time, you just want it to stop, and it can make you panic. It happened to me a lot when I had active vasculitis in my brain. The pain would get bad for long periods and I just wanted out of my body. The doctors weren’t giving me any decent pain relief because of the crackdowns on pain killers that actually work. Sometimes I couldn’t sit still when I felt like that. Going through that was probably one of the hardest things I’ve dealt with because of the lupus. I don’t know how I dealt with that kind of pain every day when I look back on it. Another reason pain causes anxiety is because it makes you lose faith in your ability to accomplish things. I get anxiety when I start working on a project, because I tend to look at things as a whole instead of taking them step by step. I think about all the pain I will have to be in to complete something and I get completely overwhelmed. It’s not that I’m not motivated to work really hard, because I enjoy a sense of accomplishment, it gives me self esteem. But it gets harder have drive when you know pain is involved, knowing it will be robbing you of focus, energy, and enjoyment.





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.

Are you a little bit better? #lupus

My rheumatologist asked me an interesting question a few months ago. “Since last year, would you say you are 40% better (since starting Humira)?”

It was a hard question to answer. I feel like yes, some things are 40% better. But I am now dealing with new things, and some other things are worse. So to me, it depends on what symptom you’re talking about. I feel like I’ve traded awful symptoms for other awful symptoms, which doesn’t much feel like relief.

Reacting my frustration, he went on to say that when a person feels a little better, they start to want to feel a whole lot better, and I agreed, although I felt like that wasn’t quite what I was feeling.

I’ve thought about this conversation for a while, because I haven’t been able to figure out how to put into words how I am feeling, but in the middle of the night a few nights ago, I figured out what has been bothering me.

Biologics like Humira are really hard to obtain. Insurances don’t want to approve them because they are new and expensive. They often subject a patient to step therapy, which is just trying cheaper medications that probably won’t help first, before approving a biologic. There is so much time that gets wasted while this goes on. So many side effects that are dealt with, without much relief. A lot of waiting for something better. There are a lot of hours spent playing phone tag and fighting with the insurance. Even if insurance eventually runs out of reasons to deny a biologic, they really drag their feet about it. Phone calls are “missed”. Faxes and paperwork are “lost”. There’s always some asshole who can’t spell Lupus, who doesn’t have one iota of medical knowledge telling you no. Then, if you are lucky enough to have jumped through enough hoops, you’ll get to schedule a delivery. And you’ll cross your fingers that you don’t have to chase down the delivery man because some of them can’t be bothered to get out of the truck when they realize your apartment has a gate.

And you cross your fingers that this is even the right medication for you, while you wait for a few months to see if it even works.

With all of the stress and waiting and fighting to finally get the medication in your possession, you would think it was the holy grail of treatments. It must be good if it’s this hard to get.

That is what has been bothering me. It took a lot of fighting to get here and I just feel like the amount of relief I’ve felt so far doesn’t equal out. It’s just been a very “this is it?” feeling.


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.



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.



February #lupus #ra #humira #spoonie

February was a long month. It seemed like my family and I were sick for weeks. My brother came down with the flu on Superbowl Sunday. Everyone’s been sick since then. We had a sudden heat wave and I think it just made everybody sicker. I had a sore throat for weeks, and then finally last week I got a cold. Once I actually got sick, it wasn’t that bad. But it took so long just to come down with it. I felt awful for a long time. I’m doing better now but my sinuses are still stuffy.

I had to take my Humira a few days late a couple times this month just to make sure I was well enough to take it. It ended up working out, but it’s kind of stressful when you’re not sure if you’re sick or not. I did my shot yesterday. I’m tired today but not sure if it’s from the shot or just from everything.

I’m not sleeping well. I’m pretty exhausted. Sometimes in the middle of the day I’m so tired I just want to cry. I would take a nap, but I haven’t been able to sleep at any time of day. I’ve talked before about my breathing problems at night. This month it’s been really bad. I feel like there is something wrong with my diaphragm. When I lie down I feel some resistance in that area, like it collapses or closes up or something. Right when I’m about to fall asleep I jerk awake gasping, and I can hear it. It’s not wheezing. It seems different. Sometimes I have a night where it doesn’t really bother me. Those seem to be the days where I didn’t take any medications that cause drowsiness or relax muscles. So now I’m afraid to take anything like that anymore, because I want so badly to just sleep. Last night was a little better than usual but I was still up pretty early because of my usual gastritis pain that hits me around 5am. If I fall asleep around midnight and wake up at 5, that’s actually a good night for me. Sometimes I go to bed and I’m not really able to fall asleep til 2-3 because of the breathing problems, and the quality of sleep I do get is pretty shitty, and I wake up all jumpy and jittery.

My joints hurt a lot this week. Particularly my lower spine, hips, knees, and the bones in my feet. I’m not really sure why. Sometimes when I get menstrual cramps, it’s like the pain goes all the way down to my feet.

I’ve had a lot of nose bleeds. I had a week this month where I was having 2 a day. I wasn’t gushing all over the floor but I still needed to keep tissues around. I chalked it up to to the Flonase that I had been using for some nasal swelling. I prefer nasacort since it doesn’t smell like flowers and it doesn’t give me nosebleeds.

The last 2 doctor appointments I’ve been to were complete shit. They didn’t listen to me at all. Sometimes a doctor’s only goal is to bill your insurance. I went to the gynecologist for a “Well Woman” visit which is free for everyone because of Obamacare. I had a few things concerning chronic pain in that area that I tried to talk to her about, things I thought she might be concerned about too, but she seemed more interested in hurrying me along, since it was my free visit. The pain I have is abnormal and uncomfortable daily and I was hoping to get some help or at least an explanation.She basically just told me not to wear jeans. And I’m just thinking “Um, it’s not normal for jeans to make your ladyparts hurt to begin with.” I thought she might check my hormone levels since an imbalance could cause pain sometimes. Nope. I also talked about progesterone to stop my periods since they make my lupus worse every month, and she really wasn’t interested in providing me with extra information. I asked her if she had some of those medication brochures and she told me to google it.

The more I thought about that appointment, the more pissed it made me. I felt a bit violated and unheard at the same time.

Doctors hate Obamacare and are prejudiced against any service they have to provide under it. She just wanted to do the minimum and get me out of her office.

I would happily talk about the other appointment I went to openly but [insert dysfunctional relative here] reads my blog and I’d sooner share things with strangers at the bus stop. I don’t usually talk about the harassment out of fear of retaliation.

It was just another situation where I was disappointed by a doctor with whom I shared things in confidence, and now I have to see another doctor and start all over again.

Today I was supposed to go see a neurologist. I made the appointment on speakerphone with my mom 2 months ago for today, March 1st. I put it right into the calendar on my iPod. I can only make appointments on Tuesday or Thursday, and I go mostly on Tuesdays. The staff must have forgotten that Monday was leap day, because for some reason I was scheduled on Monday. I know for sure it was supposed to be March 1st. I remember specifically asking for it since it was a Tuesday. So now they won’t see me at all since I was a “no show”, even though it was their mistake. They’d never admit to it in a billion years and in the mean time gave me attitude like I was too lazy to show up yesterday. They told me they tried to call me once to confirm the appointment on Friday but that there was “something wrong with my phone”. My mom called to confirm the appointment this morning since I never got a call, and it’s a good thing she did, or else we would have driven 3 hours round trip for nothing.

While I don’t really want to be at a doctor’s office where the staff doesn’t know how to read a calendar, I was disappointed that I didn’t get to see a doctor today. I really want to talk to someone and hopefully figure out my breathing problems. I’m scheduled to see a new neuro but their first available appointment is at the end of April. I am hoping that if they get a cancellation, they can get me in sooner.

At the same time I am a bit disenchanted with going to doctors in general. I feel like I’m not being heard or helped. I’m not expecting a magic wand but maybe a bit more understanding would be nice. Whenever I have a new troubling symptom I feel like it takes years to figure out what it is, because I have to go around and see all the specialists all over again, only to have most of them shrug and go “it’s probably the lupus”. Well, no shit sherlock, but I’m miserable, so fix it.

For example, I’ve had heart palpitations and high blood pressure for years. I still don’t really know why. It’s probably vascular. But for me to finally know that it’s “probably vascular” took me years of “it sounds like anxiety” and various tests coming up normal. I had to beg my cardiologist to give me medication for it. My resting BP was 140/100 and it was giving me terrible headaches, shortness of breath and dizziness. They were perfectly OK with letting me go on like that because it’s “not that high” and “it would take ten years to do damage”. It’s still a problem but I’m a bit more comfortable now. I have a handful of symptoms like this that make daily living really hard and they all just kind of shrug at me, and my nighttime breathing problems is one of them.

Also my bladder problems… I don’t remember if I already wrote about this or not, but I was able to figure out that some of my bladder irritation is probably an allergic reaction to salmon. I was eating it a lot since my diet is pretty limited, but I realized when I hadn’t eaten it in a while, I wasn’t having the burning or frequency nearly as much anymore. I still pee a lot but I’m in a lot less pain now. But I’ve been dealing with the bladder irritation since I did the Rituxan treatment in 2014 (which can happen with some drugs) and it’s been terribly uncomfortable.

Sometimes I get treated like I’m doing something to cause my own symptoms.

Or the “you’re too young to be dealing with that”.

Oh, ok then, I guess I’m not.

I’m still not really able to sit on the couch without getting the vertigo and chest discomfort. I’m really not sure what that’s all about. I’m sitting in dining and office chairs most of the time now. Some days are better than others. It’s been hard on my body but the pain has been easier to deal with than the vertigo. By nighttime I’m pretty achy. It’s hard to have the endurance to sit at a table when you’re sleep deprived, too. I feel like I’m pushing myself every day now. Days feel really long sometimes.

Veering off into a completely different direction, I am pretty disappointed with the changes in social media lately. As sad as it sounds, they are the bulk of my social life, and the new algorithms that control who and how I interact with people have made things like facebook basically useless. The facebook algorithm is designed so that the less you interact with someone, the less you see of their posts. But then what ends up happening is you never see a person’s posts so you never interact with them. It’s a shitty catch-22 algorithm. So I know my friends aren’t ignoring me, they just aren’t seeing my shit, and vice-versa. Twitter is starting to do the same thing, and they both throw in a lot of advertising, which is annoying. I also am annoyed from seeing 2-day-old posts at the top of my news feed, and seeing a post again just because someone commented on it. I’m starting to fail to see the point in using facebook. I know there are other social media apps and stuff but I don’t have a smartphone and I am limited to what my computer or my iPod 4 can do. I like sharing my art and my stupid thoughts and my blogs with people. It makes me feel normal.

Speaking of art… I had a week where I did quite a few digital drawings, still life stuff. I got sick and I got off track a little bit but I’ll get back to it. I was learning about my camera the other day. I haven’t played around with the settings much and I was having fun with that. Today I downloaded Blender to see if I still have any 3D modeling skills intact. It all still makes sense, I just have to practice it a little bit. I totally bombed this tutorial on Youtube, but probably because I was trying to do it with a headache. There are quite a few computer programs I want to try. I was looking at Maya, and I am already familiar with 3D Studio Max. I also want to try Sketchbook Pro and probably Photoshop for drawing. I also would love to get my hands on some music software like FL Studio. I can use my piano keyboard as a midi controller and I know I’d have a ball with that.

Last night the fog rolled in really thick and it smelled like the beach. It was pretty much my favorite.