Flu shot, steroids, arthritis. #lupus #addisonsdisease #vasculitis

It’s been a little over a week since I had the flu shot. I’ve been more tired, and I’ve been having some muscle pain. It doesn’t really seem like it made my lupus flare though. I did have some pain in my throat glands yesterday but it was short-lived. I had a headache the day after the shot. All in all it hasn’t been a bad experience. If your doctor wants you to get the flu shot, you probably should. Just don’t get the nasal spray vaccine, and make sure that anyone that lives with you doesn’t get the nasal spray either. People with autoimmune disease can catch the flu from the spray and from being in close contact with anyone that has had the spray.

My endocrinologist said I’m on a high dose of hydrocortisone. At the time of the appointment I wasn’t showing signs of being on too much, but I did find out afterward that I have osteopenia. I really would like to be on the lowest dose possible, but whenever I taper it makes me sick. I had Rituxan infusions over the summer to treat vasculitis in my brain caused by lupus. I had to stress dose 10mg extra of hydrocortisone to deal with the treatments. Ever since then, I haven’t been able to ween off that extra dose without feeling horrible. I tried again this week, 1.25mg at a time, and by the third day I had the shakes at bedtime. I’m not gaining weight from it, I’ve actually been underweight for a while and trying to gain. In total now I take 37.5mg every day. I feel like I’m burning it all up. Aside from plaquenil, I’m not on anything else to treat the lupus itself. My immune system basically behaves as if I have a cold all the time, which is causing extra stress on my body. When I was on Benlysta, I was taking 22.5-27.5mg a day. I would sometimes stress dose on the day of the Benlysta infusion, but I never felt low on cortisol all the time like I did with the Rituxan. I’m not sure if being on the Rituxan or being off the Benlysta is what caused the need for extra cortisol. I hope that if they choose to put me on another immunosuppressant to treat my lupus, my body won’t be so stressed and I can taper down the hydrocortisone again.

Also, as a side note: Around the time of my Rituxan treatments, my pharmacy switched my brand of hydrocortisone from Qualitest to Greenstone Cortef. Most people in the Addison’s support group seem to prefer Greenstone, but I’ve been on Qualitest for at least 7-8 years and it’s what I’m used to. Not all brands are created equal and I had a theory that I wasn’t absorbing the Greenstone, so I asked CVS to switch me back to Qualitest. I haven’t really noticed a difference yet, but I’m more comfortable being on my usual brand. It’s something to keep in mind if your pharmacy suddenly changes your brand and you feel weird.

The kenalog shot is wearing off. For a few days, it seemed like it helped the joint pain in my hands as well as my fevers. Even though it helped the pain, the kenalog didn’t seem to help the stiffness. The aching went away but I was still experiencing my joints getting stuck and losing control. My doctor said that if the kenalog was helpful, I probably have inflammatory arthritis. I feel like I only got partial relief. I have some hypermobility in my hands and I want to ask my doctor if that has any effect on the pain or stiffness, or if it could be a symptom of something else.

I’m on a beta blocker for my heart palpitations. My rheumatologist said it can make the Raynaud’s worse. He was right. My hands and feet are really cold all the time now. It probably doesn’t help the joint pain either. I can’t have a resting heart rate of 116 though. That’s just ridiculous. So for now, I’m just dealing with the cold.

I had “ice pick” headaches last night. They’re like this surge of shooting pain in your head that lasts a couple seconds and then goes away. They’re benign, but later I ended up getting a migraine, and I still have a headache now. I haven’t had the ice pick headaches in a long time. They feel really weird and alarming but they aren’t anything to worry about. I guess last night’s episode was a migraine precursor. That’s new for me so while I’m not worried, it is strange and worth telling my doctor. The pamelor has really helped my headaches. It hasn’t been perfect, but I went from having a migraine every day to lesser daily headaches, sometimes almost no headache, and only getting migraines a few times a week. That’s a big deal considering I’ve been incapacitated by daily migraines for more than a year.

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Spinal Taps and Google Maps. #Lupus

I had a spinal tap done yesterday. I had one about 5 years ago that went terribly. With that experience, I really wasn’t looking forward to having another one. Luckily, it went differently.

First off, I’m going to say that if you have to have a tap done, get it at a major city hospital where the doctor probably does dozens of them a week. The problem with my first tap was that it was done by a local doctor who didn’t have the confidence to do it, so she fucked it up. I’ve had ongoing weakness in my lower back since then. I don’t know what the hell she did back there, but I barfed afterwards and they had to give me Valium because I had a panic attack.

I was originally scheduled to go next Thursday, but my doctor called the hospital and they were able to squeeze me in yesterday morning. I was happy to get it over with rather than worry about it for a week.

If you’re nervous, and you have Xanax with you, take it before you check in. Once you’re admitted you’re not allowed to take anything. I learned that the hard way, and sat there with heart palpitations. I felt like I was in the waiting room for an eternity.

Some dude at the front desk told my mom she wasn’t allowed to be there with me. I panicked a little on the inside. My mom followed me back just to take my bag for me when it was time. The nurses and doctor didn’t say one word about her being there, and even offered her a chair. One of the nurses handed her some post-procedure information and said “here’s some bathroom reading”.

If you’re a funny nurse, it makes being a patient suck a lot less. Thank you for that, and be proud of it. It’s the little things, y’know?

I’m built like a feather, so I was able to lie down for the procedure. I was on my side, knees pulled up to my chest as far as they could go (apparently, I’m pretty flexible, despite feeling like the Tin Man most of the time). For my first tap, they made me bend over a table, which isn’t unusual, but lying down is much more comfortable. I recommend it, if you can choose. The nurses were really nice and reassured me that it wasn’t going to be as bad as I thought. The doctor came in and prepped my back, and made some jokes about having to do taps on people that weigh 300lbs. He used ultrasound to find the right spot (a technique that was not used the first time) and marked my back with a pen. They first injected the area with Lidocaine to numb it, which is honestly the worst part of the whole deal. It can really burn sometimes but it wasn’t too bad yesterday. This doctor really knew what he was doing. After they do that, the tap needle goes in. They used a pediatric needle, another thing I recommend. It takes longer but is less traumatic in the end. I didn’t feel pain really, but I wasn’t completely numb either, I felt everything that went on. When the needle goes in, you’ll feel a weird pop, it’s hard to describe, but not really painful. Just strange. Sometimes, some people get an electric shock pain that shoots down their leg and makes it kick. It happened to me the first time, but not this time. It can be painful. Somehow they managed to avoid it altogether yesterday. Once the needle is in, you can feel pressure in your lower back, but it wasn’t really painful. It is uncomfortable, though. As the fluid was being collected, I felt some tingling in my lower spine. The doctor had to ask me to relax because I was tensing up, making the fluid take longer to collect in the vials. It took a while anyway, because they used a really small needle, but given the choice, I’ll take the small needle over a big one. There was a point during the procedure where I thought I was going to panic, because reality set in and I remembered how it went the first time. I focused on this picture on the wall and started singing the lyrics to some song in my head. I can’t remember what the picture or song was now, but I managed to somehow talk myself out of the anxiety. I wasn’t able to count because I couldn’t see, but my mom said they took 5 vials that were fatter than your standard blood vials. The nurse said it was nice and clear, which is great news.

After I was done, I thought I’d have to lie on my back for an hour. Since the needle was so small, I was able to get patched up and go right home instead.

The ride home was hard. Traffic was stop-and-go for part of the way. After the adrenaline wore off, reality hit me and I just wanted to cry the whole way home. My back has been pretty sore on and off. I’ve also been having pain and tense muscles in my butt and legs. My neck has been pretty stiff. Spinal taps cause headaches in some people because it can create a small air bubble in your cerebrospinal fluid. Luckily, I haven’t had any major headaches, just small ones.

When I got home, I crashed. I couldn’t stay awake. I slept for about 2 hours. My body doesn’t handle stress well because of my adrenal insufficiency.

I’m not sure how long it will take my back to heal completely, but I have to keep the bandages on it for 2 days and skip showering to keep the puncture site sterile. My muscles are pretty sore. I can’t bend over or lift anything. I have a back brace to wear when the pain gets bad.

I will get the results when I go back to my rheumatologist in a couple weeks. He is looking for the cause of my chronic daily migraines. Even though the SPECT scan showed vasculitis, it didn’t determine the specific cause. The Rituxan does not seem to be helping at all. Once we get the results, we can figure out if the Rituxan was the right move, or if I need another lupus medicine.

I love you Mom.

On the way home from the hospital, I saw a Google Maps car. I’ve never seen one before so I was strangely excited about it.
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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.

Chiari and conflicting opinions.

As you read previously, I had an appointment with a top chiari specialist last Friday. I haven’t written about it because I’m still mulling it over in my head, and I’m also waiting on another MRI.

I’ll just come out with it. The chiari specialist says I don’t have chiari, or syringomyelia either. Although I have low-lying cerebellar tonsils, I don’t have any blockage in the flow of cerebrospinal fluid, and that just because you’re tonsils are low doesn’t mean it’s a malformation. What I and the radiologists thought was a syrinx, is actually hydromyelia, a pocket of fluid that sometimes appears in childhood growth, and occasionally still makes an appearance into adulthood. It doesn’t cause any problems.

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MRI from September 2012

The explanation I got for all the pain and headaches is that I have a long, thin neck, but I still have to support the weight of a normal-sized head, causing instability. My muscles also probably have some atrophy from not being able to exercise regularly. This combination is probably causing severe tension headaches.

He showed me some isometric neck exercises to strengthen these spots. So far they’ve just aggravated the muscles, but that goes with all exercise in the beginning.

I’m going to have another MRI on my brain just to see where I’m at now. The MRI he was looking at is about a year old. I won’t feel comfortable with being misdiagnosed all this time until the specialist can comfirm it to me on a new MRI.

I’ve seen 2 radiologists, a neurologist, and a neurosurgeon, who all validated the Chiari Malformation and Syringomyelia diagnosis. The neurosurgeon was ready to do surgery. The specialist said that radiologists tend to over-diagnose to avoid the repercussions of under-diagnosing. Plus, not that many people know their ass from their elbow when it comes to chiari, all they’ve seen of it was a paragraph in some textbook from med school.

But in the end, I’m still conflicted. I’ve lived with this diagnosis for a year, and all the symptoms made sense. While I still have a doctor’s explanation for my headaches, there are a lot of things that are suddenly left unexplained now. The vertigo, hot flashes, heart palpitations, chest heaviness, headaches when I bend over, choking on water, clumsiness, dizziness, trouble with coordination and motor skills, memory and focus issues. I’ve had a lot of these symptoms for a long time, way longer than the period of diagnosis. I won’t feel sure of it until I get another MRI. It all just seems too coincidental. What are the chances of having a thing that looks like chiari, a thing that looks like a syrinx, many of the symptoms, but then not actually having it?

Don’t take it the wrong way, if I really don’t have chiari, I will be incredibly grateful. The only thing I really want is an explanation, and some pain-management. My pain and symptoms are so bad that I was ready to do surgery if it meant getting relief. But on the other side of that coin, I could’ve had surgery that I don’t need.

Still mulling.

Chiari in Charge.

This is from July 8th but I didn’t get around to publishing it til now.

I wanted to draw today. I have this shiny-new set of copic markers to which I’ve only acquainted myself. I brought all my supplies downstairs to start working, and I realized after sitting at the table deciding what to draw that I wasn’t going to be able to sit there any longer. I’m having a day where looking down is making the room spin. It’s really hard for me to spend time drawing anyway, I always get a really bad headache when I work on something, but today I couldn’t even start something.

I’m having more and more days where I can’t ‘start something’. I used to just get rebellious against the pain and power through it, but the pain is so bad that I can’t even get started. It’s not that I’m losing the ‘rebelliousness’, it’s just that the pain has reached a peak where it is impossible to power through anymore. If I were to just ignore it, it would progress into a ‘point of no return’ where none of my pain meds would help it, and I’d probably throw up.

It is against my nature to give up on something. It is leaving me incredibly frustrated. Technically I’m not giving up, I’m just unable, but it still feels the same. I feel like I don’t know what to do with myself, because the only things that don’t lead to a raging vomit headache are standing and walking, and I can’t do that all day long.

It’s not just pain either. It’s a pressure my head fills with that is hard to describe to someone without chiari. It makes my ears throb, and the back of my head pulse. It dulls my hearing and narrows my field of vision. It throbs and pulses even more when I turn my head. My teeth hurt. My head feels too ‘full’.

I’m not entirely sure as of yet why it has gotten so much worse, or what the exact cause of such symptoms might be. After researching and talking to other chiarians, I have a few theories.

My most recent MRI report from September 2012 states that there is no blockage of Cerebrospinal fluid. I don’t think that is entirely true. Perhaps at that moment there wasn’t, but I have a syrinx, which is evidence that at some point, fluid was trapped somewhere. Since that was almost a year ago, it is probably time for another MRI to look for progression. If I do get trapped CSF fluid sometimes, that would explain the pressure and throbbing, and the ‘full’ feeling.

Chronic Pain and Movie Theaters.

I love a good movie. Especially on the big screen. But in the past few years, my chronic pain has made the experience somewhat less enjoyable. I deal with it because it’s worth it, but it gets difficult to handle sometimes.

You know how movie theater seats are. They aren’t that bad, but they are specifically designed to not be too comfortable, because they don’t want people sneaking into the theater and seeing more than one movie on just one ticket fare. They are required to have wheelchair space, which they should be, but they aren’t required to do much more than that, and that leaves people with different kinds of disabilities in limbo.

For instance, take the front row. Who can stand to sit there? Why do they even have a front row? If you’re unlucky enough to get there when the theater is full, and the only seat that is left is in the front row, you’re in for an agonizing 2 hours, especially if you have chiari. At that point, I would just leave. It’s not like you could go up to somebody and be like “could you give up your seat? I have an issue with my skull.” Yelling that over the previews would just be too awkward.

Most of the time, I make it a point to get there in decent time, so I can pick a good seat. I don’t mind the back row, sometimes I prefer it. I try to sit in the center of the row so I’m not turning my head to see the screen head-on for the duration. keeping my head in a turned position for longer than a few minutes gives me an instant headache. It’s one of the reasons I don’t have my driver’s license, because I can’t look over my shoulder.

Sitting for long periods is always aggravating to chiari. It puts a lot of strain on my already-vulnerable neck and shoulder muscles. I always get a headache about halfway through the movie. I sometimes take preventative painkillers or muscle relaxers before the movie but it doesn’t always work. Sitting absolutely upright for a few hours is just bad for some reason. I find myself leaning my face on my fist to alleviate the chiari discomfort, but that always aggravates my trigeminal nerve, which can be excruciating. Halfway through the movie I feel like I start getting the “I can’t wait for this to be over” feeling, even if the movie is great. It sucks when you’re sitting there and you feel it coming on. You get a pulse in the back of your head. You feel like your brain is beating like a heart against your skull, which it actually is, since spinal fluid pulses with your heart. Your neck muscles tighten, then your back muscles, into burning knots. The back of your head gets full of “pressure” which can be likened to sinus pressure. Then the pain starts to wrap around to the front of your face. It goes into your jaw, ear, and eyebrow.

When I’m at home watching a movie, I have the luxury of lying on my side on the couch, which will eventually bother me too, but it’s so much more comfortable, and I can usually watch a whole movie like that without much of a problem.

In certain theaters, the sound is too loud. The theater in my area has imax, and if your theater room is next to the imax theater, you won’t be able to hear your own movie because the imax speakers are too loud. This is always a good headache starter, and makes it a lot less fun if you already have a headache.

I’ve gotten to the point where the pain is so bad from sitting, that I cringe at the thought of going to the movie theater. I still go, it’s the kind of rebellious person I am, but I notice now that I concern myself with how long a movie is.

On a side note, I wish they offered more at the snack bar that was sick-people-friendly. They post signs all over that say “no outside food or drinks”, and they don’t really enforce it, but it seems unfair. I’m not a diabetic, but I have bad reactions to large amounts of sugar, and sometimes salt as well. If you can name something that would be safe for me to eat from the movie theater, I’ll stand on my head for ten minutes.

That being said, I’m a big “food-sneaker-inner.” I have to do it, and if they ever give me a hard time about it, I’ll just tell them about my health problems and ask them if they want a lawsuit. So far though, no one has ever looked in my bag or noticed my giant bottle of water that I bring in.

Plus, who wants to pay four bucks for a handful of candy anyway? 

It would be nice if one day I could comfortably enjoy a movie on the big screen. In the mean time, I’ll just deal with it. It’s most definitely not going to stop me from seeing Iron Man 3, so suck on that, chiari.

Benlysta #6

I had my 6th infusion yesterday. It went well, as it usually does, without the aggravation of talking on the phone with the pharmacy like last time.

I’ve probably talked about what an infusion is like before, but I’m just gonna run through what it’s like again.

It’s about an hour’s drive each way from my house to the office where I get my infusions. My rheumatologist’s office is actually in Beverly Hills, which can be interesting in itself. It’s not my cup of tea but I do manage to see some funny things while I’m there. I have to get my infusions in Los Angeles because it’s not something they seem to offer near me, and the doctors in a big city tend to know more and have the latest treatments when it comes to complex and rare diseases. Travelling isn’t a big deal I guess, it’s something I have to do to get the best possible treatments. I sometimes have a hard time with it though. With the Chiari Malformation, my neck gets really stiff and I get a lot of pressure in the back of my head from sitting too much. I do ok dealing with it on the way out there, but on the way back, when I’m almost home, it gets hard to deal with. I’ve tried lying down in the car and it helps the pressure, but it unfortunately gives me a headache. Some trips go really well, and others just give me a headache.

When I get there, we park in the parking garage across the way, run across the street, and take the elevator to the second floor of the building. They usually call me back as soon as I get there. I sit in the doctor’s actual work office, in a recliner (which unfortunately isn’t as comfortable as it sounds) and they wheel the IV cart in. They poke me with a needle and insert the line (the RN is really great at doing this, doesn’t really hurt and I don’t even have a hole in my skin you can see and it’s only been a day, always thankful for someone who can do it well). Before they hook me up to the IV bag, they draw blood through the line. They always draw blood before an infusion to check out how the last infusion is effecting your body. They are checking to see how your liver is handling it, and checking to see if the Benlysta is lowering the lupus activity. After they draw blood, they give me tylenol and claritin, because benlysta can give you headaches(like I need another cause, heh), and the claritin is just an allergy precaution. Then, at last, they hook the line up to the bag, and you’re stuck there for the next 60-90 minutes, depending on how long it takes your bag to empty (definitely make sure you go pee right before they hook you up, ’cause pushing around an IV tree to the bathroom is not a good time, and neither is holding your pee forever). I also recommend bringing some good books, your tablet, ipod, an awesome mom, just something or someone to keep you company while you’re sitting there, or else you’ll just be staring at the wall for a while. Sometimes infusions can make you have a funny taste in your mouth, so it’s good to bring some mints to keep you from having that ‘bleh’ taste in your mouth. I like the Ice Breakers Duo fruity mints. You probably won’t really feel anything while getting your infusion. Sometimes I feel a little warm, but I never know if it’s the treatment or the fact that I’m heat sensitive and my doctor keeps her office at 75-80 degrees F (23-26C)…I tend to hold heat in for whatever reason. I’ll be sitting there in my tank top and my doctor is like “Aren’t you cold?” and I’m like “No, its hot in here.” It partially has to do with sitting in the sun in the car on the way there. Like I said, I hold in heat. It sucks.

Once the bag is empty, they remove the line, and give me a snazzy bandage that doesn’t stick to my skin, it only sticks to itself (like florist’s tape) so I don’t have to worry about the adhesive ripping my skin off.

After the infusion is done I wait a while, and the doctor comes in to have a chat with me so I can catch her up on all the day-to-day things that go on. This time, we were talking about getting me in to see a cardiologist she works with, so I can finally get some answers on why I am having the heart/chest symptoms (see other blogs). She said that I tested positive for an antibody that sometimes attacks the heart (RNP), but that my ultrasound didn’t seem indicative of any sort of inflammation or otherwise negative activity that she could tell, but she also wants to have her cardiologist check it out because it can be tricky to spot. Benlysta doesn’t protect your heart so it would mean switching treatments if something was going on, and I’d really rather not have to do that, some of the other drugs just sound scary. I’m a little anemic, which always seems to be a bit of an issue for me, and I talked to her about it over the phone and I meant to bring it up to her while I was there, but I forgot. It’s hard to remember everything. “Keep a notepad” I know, I know. I get tired of doing that. Plus, I am lucky if I can remember to bring the damned thing with me half the time. Anyway, I did read online that sometimes anemia can cause chest discomfort and heart palpitations, and also cold hands and feet, so it had me curious. I started taking a supplement after I read that, can’t say I feel any better or anything, but it’s only been about a week since I started it.

Back to the infusions, they don’t make me feel weird after. Usually, just tired from riding in the car. Sometimes though I notice when I get an infusion, my throat glands get sore and I get the butterfly rash during the actual infusion. I didn’t seem to get that this time, although I noticed a little gland soreness when I got home. I don’t think my face flushed though.

Something that is important to remember about benlysta is to drink a lot of water before, during and after. It helps ward off the headaches that it causes. Since my ride in the car isn’t just a skip down the road, I tend to subconsciously avoid drinking water so I don’t have to hold my wee-wee all the way home. I don’t mean to do it. But it results in a terrible headache and I have to make a conscious effort to drink water. Last night I ended up with a headache, but it seemed to go away after a bunch of water and lying down. It wasn’t as bad as my chiari headaches, that’s how I know it was the benlysta. Chiari headaches don’t just ‘go away’ per se. Once you get a chiari headache you’re sort of fucked for the rest of the day.

So the day after an infusion, I usually feel somewhat worn out. Not sure if it’s the medicine or the trip or all of it. I make the trip sound bad, but really, it’s not. It’s relatively a quick hour. But it’s still tiring. I got in the car today to pick up my brother from somewhere and I had that “I feel like I was just in the car forever” feeling. I was pretty tired after a few errands, and it could have been leftover, but it could have also been the cardio/shortness of breath issues I’ve been having. Sometimes when I have an episode of that, I’m just suddenly so tired I can’t stand. It’s been happening even when my heart rate is normal (and my bp is always normal no matter what’s going on). It feels really awful to be out somewhere and just be like, “Man, I’m too tired to stand anymore all the sudden.” and it becomes this agonizing wait to sit down.

That’s really it for now. It’s bedtime and my cat is yelling at me.

TTFN