Can you get Raynaud’s everywhere? #lupus

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

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

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

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

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

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

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



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.

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.

Rheumatologist, Endocrinologist, and some other big words #lupus #addisonsdisease

I’ve been in to see my endocrinologist, and I had some tests run. My thyroid is slightly under active, much to my surprise. If it was going to be anything, I figured it would be over active. We’re just going to watch it for now. My D3 is low, which I wasn’t surprised about, considering I can’t be in the sun.

The hydrocortisone dose I’ve been taking to treat my Addison’s is probably higher than it should be. I haven’t been able to lower it without having pre-crisis symptoms, like vomiting. I gave a urine sample, and also attempted a 24-hour urine sample which wasn’t successful because they only gave me one jug and I filled it after 16 hours. I will probably have to redo that test. They’re looking to see if I in fact need to be on the higher dose of hydrocortisone or if I’m just wasting it, and also measuring magnesium levels. My bone scan came back showing osteopenia which I’m not thrilled about. It’s probably caused by a combination of steroids, low D3, and prilosec/antacid use. I don’t know how they’ll want me to treat it, besides more calcium in my diet. I’ve been taking 4,000IU of vitamin D3 for almost a month, per my rheumatologist. I don’t know how to help my stomach issues while also not effecting the absorption of certain vitamins, and possibly my hydrocortisone. I tried the Bragg apple cider vinegar thing and so far it has only made it worse, so I went back on the prilosec. I’m probably going to make an appointment with a GI doctor.

Yesterday I went to see my rheumatologist. We talked about my chronic fevers. Somehow he knew that they came on in the afternoon, so he must know to be looking for something specific. I got the flu shot. I also got a shot of kenalog (steroid) intramuscular to see if it would help with joint pain. If it does help, he said I probably have inflammatory arthritis. If it doesn’t help, it’s more like a “fibromyalgia” thing.

He talked about having widespread “vasculopathy”, a word I think he coined to explain the spasm-ing and un-spasm-ing (more coined words) of my blood vessels. It’s not ‘sinister’ the same way vasculitis can be, and doesn’t pose the same risk of damage and blood clots like vasculitis.

I got a prescription for a beta blocker from my cardiologist. My resting heart rate was 116 the other day for no reason. I’m taking 50mg metoprolol. It seems like it helps for the most part. I’m still having occasional palpitations.

My rheumatologist said the beta blocker my cardiologist put me on can make Raynaud’s worse. I’m on a pretty low dose so he let it go for now. He talked about how Viagra and Cialis are actually great drugs to treat Raynaud’s, but that insurance won’t cover it because I’m a woman. My toes are numb and blue because they don’t get enough blood flow, but that’s not a good enough reason to get insurance coverage I guess.

Sorry, I left my flaccid penis at home.


If the kenalog helps my joint pain, I will probably be put on Methotrexate or something like it. In the mean time I’m just going to pay extra attention to what my joints are doing. I’m not sure if they’ll want to do pills or injections this time. I really don’t need something else to give me stomach trouble.

The effects of flu shot has been OK so far. My arm is sore on and off. I’m tired, I have a bit of a headache, and the chills. My throat glands are sore on and off. Honestly though, I could have all that on a regular day too. So far I don’t feel like death, so I’m happy about that.

Remember that if you or someone you live with has an autoimmune disease, you can’t have the nasal spray flu vaccine. The needle doesn’t hurt anyway, especially if your nurse is good.

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.

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.