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.

 

 

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humira #lupus #stilldisease

I had a good doctor appointment on Thursday. I’ve been on Enbrel for the past four weeks, and seeing some subtle changes. My doctor walked in the room and immediately noticed that my skin is no longer covered in a mottled red rash. He seemed really surprised about it. I think “giddy” would be a better word for it.  I hadn’t noticed its disappearance myself. I guess I hadn’t been paying much attention to it, but now that he pointed it out, I can say that he is definitely right. I don’t know how long I’ve had autoimmune activity, but I can tell you that I’ve had that mottled rash since I was a kid. I never thought much of it. I do remember noticing it would get worse when I was cold or anxious. I remember my first day of second grade, being the new kid, and my legs were covered in it.

I’ve honestly never had a doctor be that excited for me before. In the past year I’ve become extremely skeptical of finding a treatment that would bring me some relief, but I’m starting to think differently.

I have a lot of gastrointestinal symptoms, including gastritis and esophagitis, which at times can be pretty painful. This week my doctor switched me from Enbrel to Humira. Both are TNF blockers, but Humira is a biologic that can sometimes help with GI inflammation. Also Humira is a nice switch because I only have to do the shots twice a month as opposed to the once-a-week Enbrel shots.

I did my first Humira shot 2 days ago and I am noticing a change in my GI tract. I didn’t realize it would work that quickly. I don’t think it’s a coincidence, because I’ve been feeling horrible for months and all of a sudden I just don’t feel so completely awful anymore. I’m still having some pain and heartburn, but something seems different.

I ate a snack today and didn’t regret it immediately after. That’s a big deal.

Maybe at some point I can eat real food again. My diet has gotten so bland it’s actually grossing me out. I miss pizza. And chili fries. And flavor.

My doctor has mentioned the possibility of vasculitis being present in other parts of my body. It’s hard to really know for sure. For the past 3 years or so I’ve had to cut out almost all salt from my diet, because I would have a bad reaction to it right after eating. My blood pressure suddenly became high. Both are strange occurrences for me because I have a disease (Addison’s disease) that usually requires a higher salt diet and usually tends to present itself with low blood pressure. It might be too soon to tell but it seems like lately I’ve been able to eat salty food without feeling that terrible after. It would be nice to be able to eat a small amount of salt again, considering how hard it is to leave out salt. Plus salt is flavor, and I like flavor.

All of that is of course a theory, but it makes sense to me.

I’m still having some fevers, but overall I don’t feel as hot as I normally do. It’s hard to gauge sometimes because the weather is still so hot here. But I’m having a few hours a day where I’m not uncomfortable. It’s been pretty nice.

I am having some trouble with my lungs. I suppose I have been for a while. My cardiologist’s assistant said she heard some tightness in my lungs. It definitely feels tight. I get short of breath easily. It has been affecting my sleep for a while. I’m going to see a pulmonologist. I had asthma as a kid and I do think that to some degree I still do. But I also think there is some other kind of inflammation going on as well. It’s gotten gradually worse like all my other problems. I’m doing a repeat stress test on my heart just to make sure, too.

My next Humira shot is on the 29th. I’ve got a few more doctor appointments coming up too.

Exercise. #lupus

“Do you exercise?”

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Methotrexate, and GI appointment. #lupus

I saw my rheumatologist a couple weeks ago, and we’re going to continue the methotrexate for the full 12 weeks. He talked about adding another rheumatic drug after, like xeljanz or imuran, and the kineret could still be a possibility as well. It will probably be easier for my doctor to persuade the insurance company to cover another drug if he can tell them that we have already been using methotrexate. Some of the other drugs can be used with methotrexate for additional benefit, too.

Lately I’ve been waking up in the night with red hot itchy joints. It’s also been happening in my feet. My evening fevers seem to have turned into early morning fevers. I have the butterfly rash pretty regularly now. I’m having hard time with getting dizzy when I look down for too long, like when I’m crocheting or on the computer. My neurologist actually brought up something interesting, revisiting the chiari diagnosis. He is the first doctor to say that there is some “grey area” when it comes to diagnosing what is and isn’t chiari. My cerebellum is herniated 6mm, but Dr. Batzdorf told me it wasn’t chiari. My neurologist calls it “Tonsillar ectopia” which is fancy for herniated cerebellum. Because my cerebellum is a little low, looking down probably puts pressure on my brain stem, and that’s why I get dizzy. There isn’t really definitive criteria for diagnosing chiari so I’ve seem to have fallen into a grey area category. I do think most of my headaches are from the vasculitis and not from the tonsillar ectopia. But some of the dizziness and headaches I get from turning my head in certain directions for too long I think could be attributed to the tonsillar ectopia. Knowing what I know now about the vasculitis, I’m glad I didn’t go in to get the surgery. The surgery doesn’t have good statistics anyway.

A couple days ago I went to see a Gastroenterologist. I was surprised they had an appointment for a new patient available so quickly. We talked about my heartburn issues, and the medications I’ve tried for it. He is going to perform an upper endoscopy in a few weeks to take some biopsies and check out my esophagus. They’re going to use anesthesia so I won’t have to be awake for it. I’ve never had anesthesia before. I will probably need some form of hydrocortisone for the procedure because of the Addison’s Disease but I have to contact my endocrinologist to find out if I can just take an oral stress dose or if it has to be IV. I also have to stop taking ibuprofen 5 days before the endoscopy to help avoid excessive bleeding, which means no Duexis for 5 days. I believe a lot of my headaches to have an inflammatory cause so I’m not sure how I’m going to get through those 5 days. I skipped a day and a half of Duexis once and I definitely felt it. Also, the Duexis helps with the pain and inflammation in my esophagus. Before I was taking it regularly, I had trouble swallowing certain foods and I had pain bad enough that I couldn’t wear a bra. Now that I take it twice a day I don’t have the pain or trouble swallowing as much. It probably doesn’t help the acid but without it I’m not able to eat certain foods.

The doctor explained that sometimes the acid reflux can be caused by food allergies, similar to how certain allergens can cause asthma. He also talked about certain bacteria that can cause acid reflux and ulcers, too. He talked about the possibility of a hernia also, and being able to check for all these things on the endoscopy. He was pretty good about telling us about all the risks involved, but assured us that he’s never had a problem before in the thousands of endoscopies he has performed.

Pain is a disability too. #lupus

I have a guitar sitting in the corner of my room. It has a pretty thick layer of dust on it. I’ve left it sitting there as a reminder that I’ll be able to get back to it when my lupus is in remission. But lately it’s been more of a reminder of what lupus has taken away from me. To call myself a musician at this point feels like a lie.

I can barely get through a song. I can barely play long enough to learn a song. The muscles in my hands cramp and cause my joints to lock up and I lose control of my fingers. It’s quite painful. I’ve had problems with my hands since I first got a guitar in 2002, but the past few years have been especially bad. I’ve had a lot of testing done, from MRIs to blood tests and nerve biopsies. I just had a spinal tap done to make sure I don’t have multiple sclerosis. All inconclusive in relation to my hands.

I’ve managed to acquire a drafting table, which I thought to be more ergonomic when it comes to drawing and my posture. I haven’t really been able to sit and work on anything yet because I’m still recovering from the spinal tap. My lower back is pretty weak. I went to the movie theater on Saturday and sitting in the theater seats made my back sore for 2 days. My back muscles have had this ‘domino effect’ where I started off sore in the lumbar area, but the muscles surrounding those muscles are now starting to become sore. That’s pretty typical of any back pain, most likely because those muscles are compensating for the sore/injured muscles.

As far as art goes, colored pencils used to be my main medium. But using them requires so much ‘elbow grease’ that I’ve had to move on because they are too painful to use. I bought Copic markers in hopes of being able to put down some color without having to set my elbows on fire. It’s been a good transition, I just haven’t been able to use them as often as I’d like. I also paint, usually acrylics on canvas. When I paint I tend to do an entire piece in one sitting, which is a bad habit of mine.

I have a stack of Japanese textbooks, ranging from conversational to slang and verb conjugations. I love reading them, but I can’t seem to retain any of it. One theory my rheumatologist has is that my blood vessels have a habit of being in a spasm and then “un-spasming”, causing my brain to flux between being over- and under-oxygenated. The periods of over-oxygenation are what cause some of my headaches, and being under-oxygenated would cause the problematic ‘brain fog’ and contribute to my seeming inability to retain new information. He called it “Raynaud’s of the brain” and “Vasculopathy”.

Not to mention the fact that I have headaches every day and am in no shape to be remembering what day it is, let alone Japanese. Pain in any part of the body can make it hard to concentrate. It’s like when you’re taking a test at school and you have to pee really bad. You probably won’t be able to concentrate, right? Pain does the same thing.

The concentration and memory impairment also has made it difficult to do art. There is always a bit of planning involved before I start a piece, and I often feel so overwhelmed by the whole process that I don’t know where to begin. The ‘overwhelmed’ feeling I think comes from knowing that to do art I also have to feel pain in the process. I’ve been trying really hard not to allow myself to associate art and music with pain, but it is becoming more difficult as time goes. It’s hard when something that can bring so much happiness can also cause so much pain.

If the oxygen issue is true of my brain, it makes me wonder about my hands. It could also be possible that my hands are under-oxygenated which is why they would cramp up and tire so easily. I don’t know if I have vasculitis in other parts of my body, but I don’t see how it could be present in my brain and nowhere else. I do have Raynaud’s Phenomenon, which must account for at least some of the difficulties I have.

Then there is always the typical joint pain that goes with Lupus. I’m in a flare right now so it’s especially terrible. I’ve barely been able to type this past week. I haven’t really even been sleeping because of pain, which has been proven to lower a person’s pain tolerance. It’s a vicious cycle.

You can’t tell by looking at my hands that they are a mess. You can’t tell by looking at me that my immune system has gone rogue and decided to attack random things. There is no “wheel chair” or “cane” or other visible entity that makes my disability obvious. If I happen to have makeup on or my hair done, it doesn’t mean I feel well.

As a side note: Let’s be honest. It takes like ten minutes to put on makeup. I’m not going to walk around feeling like a slob to fulfill whatever your requirement is for what a sick person looks like. It’s bad for my morale. I deserve to feel like a normal woman too. There’s always the other side of that coin too. If I walked around like a slob people would say “Well if you only took better care of yourself, you’d feel better”. Either way I can’t win so I might as well do as I please.

I have tickets to a concert at the end of this week. I have had the tickets for months, but I have no idea if I will be able to go. My pain is day-by-day. Actually, a lot of the time it’s hour-by-hour. I could wake up feeling not too bad and get hit with a wave of pain sometime during that day that could keep me at home. I’m constantly having to “play everything by ear” because of pain. It’s really hard for me to make plans, but spontaneity doesn’t seem to work well, either. Sometimes I can feel fine when I go out, but while I’m out I can start to feel like crap and either have to go home early or endure feeling like crap while I’m out. It takes the fun out of a lot of things. It makes it difficult to be social because people just don’t get it.

Welp, until I Andy Dufresne my ass out of the jailhouse sewer of lupus, I’m going to continue the fight to keep the line between pain and the things I enjoy a bold one.

Yeah, that was a Shawshank reference.

Test results #lupus

I went to see my rheumatologist yesterday to discuss the results of my spinal tap and a few other tests. There was no indication of inflammation in my spinal fluid. I also tested negative for Multiple Sclerosis, which was something I was worried about. I tested negative for neuro antibodies. I had tested positive for the neuro antibodies before the Rituxan. This means there is currently no antibody activity in my Central Nervous System. While I am still getting daily migraines, it is no longer caused by antibody-induced vasculitis in my brain. I am no longer in danger of having a stroke or TIA. The cause of my headaches is no longer an emergency

I’m going to see my neurologist on Tuesday to figure out what the current cause of my headaches could be. My rheumatologist believes it could still be vascular-related but he explained it being like Raynaud’s of the brain. He thinks that if my blood vessels constrict and dilate much like the vasospasms that occur in Raynaud’s, then it causes my brain to sometimes be over- and under-oxygenated. Headaches would be the result of over-oxygenation and ‘brain fog’ would be caused by under-oxygenation. He called it ‘vasculopathy’ and said it was nothing to worry about in the way of emergencies. He also said it could be difficult to treat. After I meet with my neurologist and he can give me a new assessment based on my new lab results, my rheumatologist said he would come up with a new ‘game plan’ to treat the rest of my lupus.

My Sed rates were normal. There was no indication of muscle inflammation in my blood. My ANA is still high, which still points to definite lupus activity. My ANA will always be positive, there isn’t anything that can be done about that. I will always be positive for other lupus antibodies as well, the only thing that changes is their level of activity. I still have definite systemic involvement. My ferritin levels were actually normal, which is unusual for me. I’ve been anemic for years. I have changed my diet a little. I stopped eating red meat completely (not that I really ate it anyway). I’ve basically been eating rice, potatoes, vegetables, chicken or fish, cereal and almond milk, fruit and some organic snacks in between meals. Everything is low salt, no preservatives, and organic if I can help it. I don’t eat restaurant food or anything instant or microwaveable. I’m unsure what caused my ferritin levels to become normal, but I’m certainly happy about it. My vitamin D3 is low, which is not surprising, since I cant be in the sun at all. He told me to take 4,000 IU a day.

There are still things to address in the future, like the constant heart palpitations, high blood pressure, the daily headaches, and the overall chronic pain and fatigue that slow me down. The rheumatologist had to take our first couple of appointments to take care of the most important and alarming aspect of my symptoms, which was the vasculitis. I have a neuro appointment on Tuesday, an endocrinology appointment at the end of the month, and I’ll see the rheumatologist again sometime after that to put everything together to figure out what my next course of treatment is. He talked about prednisone, which I’m not thrilled about, being that my adrenals are already underactive, and I already have chronic heart palpitations. The only person that could really answer that question is my endocrinologist. I’m sure I will still need to be on an immunosuppressant of some kind. It wouldn’t surprise me if they actually put me back on an IV drug like Benlysta, since my CNS lupus seems to be a little quieter for now.