Hello, March #lupus #blog

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

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

So far no vomiting, and no headache.

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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.

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.

Rituxan 3 and 4

I had my final dose of Rituxan last Thursday. They put the IV in my forearm. On the 3rd infusion I had them put the IV in my hand, which was a decent location as well. For my first 2 infusions it was in my wrist and the second time I bled under the skin for some reason.

So far, my main side effects have been fatigue and fevers, and some burning skin irritations. I had this rash on my neck that was red and felt chapped, and burned like a sunburn. I was putting cortisone cream on it for a few days. It’s gone now. I’ve also had some stinging underneath my arms, which actually isn’t uncommon for me. I’ve had irritation under there that has kept me from wearing certain t-shirts since I was about 16. It seems like the Rituxan temporarily made it worse. Luckily, since I was already used to the problem, I have a good selection of ‘flutter sleeve’ shirts and other baggy shirts to wear.

I’ve also had burning urination, and both the doctor and infusion nurse said that Rituxan could cause that, but I gave a urine sample anyway. I’ve never had a problem with that before, so it would make sense that the sudden onset is from the Rituxan, but I just wanted them to make sure. I’ve been taking Cystex, which is an NSAID that helps with the burning. It works great and I recommend trying it if you can take NSAIDs.

Last night I had some pretty bad muscle cramps in my back and in my ass. I attributed that mostly to electrolyte imbalance (it’s easy to forget sometimes I have adrenal disease, too) but I don’t know for sure if that’s the right call. Ass cramps are pretty painful and usually keep me awake. The back pain woke me up at some rude hour, and even though I was half awake I remember it being pretty bad. Before I went to bed I had some electrolyte supplements and I ate a banana for the potassium. I drink a lot of water, probably more than the average person, so I thought maybe I lost too many electrolytes. But there’s a good chance the Rituxan was to blame, too.

I’ve been in the worst brain fog. It started before the Rituxan, but I’m sure now the Rituxan could be making that worse too. That’s why I didn’t write for my 3rd infusion. Writing usually comes easy to me but I haven’t been able to ‘find my words’ lately. I catch myself thinking in pictures and wondering how the f*** to put it on paper. It’s not a pleasant feeling.

Even though I’m in the throes of brain fog, I did manage to start up a music blog. If you like alt/rock/folk/indie you can check it out here. I like to write about bands that people don’t seem to know, so maybe you’ll find some new music there.

As far as treatment goes, I just play the waiting game now. My doctor said it could take up to 3 months to see any changes.  I won’t repeat a brain scan for about a year she said. I guess the ultimate goal is to get my immune system to stop attacking the blood vessels in my brain, thus lowering the inflammation. I’m still having headaches every day.

That reminds me, I stopped taking the nifedipine to treat the Raynaud’s. It was helping my cold blue feet but making my headaches so much worse, and I really don’t need that. I really liked not having cold blue feet but it was just not worth the amount of pain the headaches were causing. So I guess I’m back to wearing socks and shoes all the time. No sandals for me unless it’s really hot outside. I’ve actually been wearing Sanuks, which are the best of both worlds. Not very supportive, though.

Well, that’s it I guess. I’m tired, my ass hurts, and it burns when I pee. Other than that, I’m fabulous.

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.

Tweak tweak.

There goes my back. I fell asleep last night in some twisted-up position, which I tend to do when my glutes are in a hot spasm, and I managed to pull a muscle in the middle of my back. When I breathe in it feels like someone punched me. I can only sleep on my sides because of the Chiari, but my ass doesn’t much like it, so I twist my lower half to deal with it, and now my back is mad at me.

All bitching aside,

About a year ago I went to a chiropractor’s presentation on trigger point therapy, and he said “There is no such thing as sleeping funny.” I strongly disagree, especially if you have chronic pain. It was a good presentation despite that tidbit, although I can’t say I’m a believer in chiropractors generally speaking.

There’s something to be said about trigger point therapy though. It really does help. If you’re not familiar with it, it’s basically treating a muscle spasm by pushing your thumb into it firmly, rather than massaging it. You have to be careful not to bruise yourself or the person you’re working on. Do some research before you try it to make sure you are doing it the right way.

Unfortunately, I’ve become pretty sensitive to any type of muscle manipulation. I was getting massage therapy for a pretty long time, but my muscles have become weak from hurting too much to exercise (and from the fact that I produce very little testosterone), and it just hurts or feels “weird tingly” when anyone touches me. It’s also become a problem because my Chiari headaches have gotten worse, and anything that increases blood flow to my neck and upper back just makes my head pound. Kind of a bummer, since massage was a huge stress-reliever for me. I’ll get back to it at some point, hopefully this year.




Back Friday

No, That’s not a typo. I fucked up my back. And not by going shopping at ridiculous hours of the morning. I boycott that shit every year. I’m so lazy, I’d rather pay full price for everything just so I can sleep after thanksgiving dinner.


Yes. I tweaked my lower back. Normally I refrain from a lot of cleaning and anything that requires excessive bending over, but I wanted to fix up my room myself for a change, and now I’m paying for it.

As my previous posts have stated, I had a spinal tap in 2009, and my lower back hasn’t been right since. I think it is possible they hit a nerve, because I sometimes get symptoms like sciatica, but in both legs.

I’m feeling a lot of pressure in my lumbar spine. It feels like I have some inflammation pressing on a nerve. If I move wrong it feels more like a pinch.

So I’ll be spending my “Back Friday” with my heating pad and my cat and my xbox. Not necessarily a bad day, considering.