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.

Neurology and stuff. #lupus

I went to see my neurologist last week. He knows about so much more than neurological disorders. He’s like a walking PubMed. I feel pretty confident in his knowledge of all my health issues, and how they may or may not relate to neurology.

Before I got the spinal tap, I talked to him on the phone about getting some headache relief. I’ve had them every day for years and I was going through a really bad bout of them. He sent in a prescription for nortriptyline and I’ve been on it for a few weeks now. He just raised my dose from 10mg to 20mg and it’s making me feel pretty groggy. I am noticing some mild relief from the headaches, and occasionally having mornings where I don’t wake up with one and nights when I don’t go to bed with one. I still had a pretty bad headache the other night. Antidepressants, even if they’re just for headaches, have an adjustment period where your body has to get used to them, so I’m going to wait it out and see if the grogginess goes away. If it turns out to give me decent headache relief, it could really change my life. If it makes me groggy forever, I’ll have to try something else. I hate trying new medicines but I can’t have headaches every day for the rest of my life.

My neurologist looked over my test results from the spinal tap and blood tests. He feels that everything is a result of the lupus and that I don’t have a separate neurological disease. He also agreed that the Rituxan did its job on the neuronal antibodies.

My lupus flared yesterday. I am always sickened by lupus but there are certain times where it gets really angry. I was stressed out yesterday morning because of this other appointment I had. The combination of the stress and my period sent me into a flare last night. I had a lot of back pain yesterday and when I was sitting to watch TV last night, I got hit with a bad wave of pain everywhere. I slept like shit because of it. I’m really not on any substantial pain killers. I don’t think I want to be either, that kind of thing never seems to help my type of pain for some reason anyway. I took extra hydrocortisone for my Addison’s since my body was under stress. I was starting to have those low-cortisol symptoms. It seemed to help the pain too. I took a little extra tonight too since I’m still in a lupus flare. My face is red and it burns like a sun burn. I have a fever and my skin is really hot to the touch, and sensitive to my clothing. It doesn’t help that the weather here is hot. I’m achy everywhere again but not as bad as last night. I’m pretty tired. I have been all day. I never really know how long a flare will last. I’ve taken ibuprofen and Tylenol and I’m still in pain and running a fever. But if I didn’t take either of those, it would probably be really bad.

I’m going to see my endocrinologist at the end of the month. I want to make sure I’m on the right amount of steroids for my Addison’s, and talk to him about my chronic heart palpitations. My rheumatologist wants to put me on prednisone for my lupus, but I have to ask my endocrinologist about it first since any steroids will effect my Addison’s. I know my endo isn’t a fan of prednisone, but I might need it for my lupus. Honestly, I don’t really want to be on it either. The side effects are a bitch. But if it’s a stepping stone to put my lupus in remission, I’ll do it.

I’m still pretty sore from the spinal tap. My muscles feel weak and it’s hard to do anything that requires bending over. I’ve been having pain there just in general, too. It was bad yesterday. I’m still using the back brace. The pain and weakness is a pain in the ass. It’s just another thing on my list of things that make daily activities more difficult.

Other than that, I’m married to my crochet hook and hoping for some cold weather.

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.

Recovery #lupus #addisons

Recovering from the spinal tap has been up-and-down.

I have Addison’s Disease, which is an adrenal gland insufficiency, caused by autoimmunity. The adrenals are responsible for responding to and handling stress. Because mine don’t effectively produce cortisol to handle stress, I take replacement hydrocortisone. The amount of cortisol you need daily can change, as do daily stress factors. “Stress” refers to the obvious *regular* stress of daily living, but also encompasses excitement, getting your period, and getting sick. All of these things would cause the body to release more cortisol. Since my adrenals don’t do that, I have to take extra hydrocortisone in a stressful event. It’s a shot in the dark most of the time. There is no blood meter for cortisol. I just have to guess. If I don’t take necessary hydrocortisone, I will have what is called “Adrenal crisis” or sometimes called “addisonian crisis”. If a crisis is not treated with emergency steroid injections, it can be fatal. Most ambulances do not carry these injections. There are small charities working on this now.

Back to my spinal tap. I did not “stress dose” my hydrocortisone for this procedure. I have already been taking a stress dose to deal with the aftermath of the Rituxan treatments. I was concerned that my current stress dose could be a little too much, but I can’t get through the day without getting pre-crisis symptoms if I don’t take it. I didn’t take extra for the tap because I felt I was already taking enough “extra”.

I did well during and after the procedure, except for taking a nap after. But about 2 days later, I crashed. I had a delayed stress reaction from the spinal tap. I got really dizzy and weak, and my chest felt really heavy. Normally when I’m low on cortisol I feel like vomiting first, but I had different symptoms this time, so I didn’t recognize it right away. On top of that, I got a massive post-tap headache. I felt really, really awful.

When I realized what was going on I stress-dosed, and it definitely helped. The headache was another story, though. I’m still taking the stress-dosing day by day.

As far as spinal tap side effects go, it’s been a little unpredictable. The day of and day after did not consist of any headache at all. It made me wonder what my intracranial pressure is on any given day. My back has been pretty sore, most likely from the local anesthetic injections into the surrounding tissues. Some of the soreness traveled down to my butt and legs, which is probably just a result of those muscles compensating for my lower back. The headache hit me Sunday night, and it was really bad, and atypical of my usual daily headaches. I took imitrex and it helped, but curbing the adrenal symptoms was difficult to deal with at the same time. I still get headaches and dizziness, so I’m wearing my back brace intermittently to keep some pressure on the area. The nurse said applying pressure could help.

The puncture site is nice and clean. I left the dressing on for 2 days. I don’t have any swelling redness, or pain when I touch it. It is slightly bruised from the injections, which is probably why I’m sore. When I bend over it’s sore and tight in that area. All to be expected.

I gave lying flat on my back a try for the headaches, per the nurse’s suggestion, but it doesn’t help me. My problem is that lying flat on my back on a good day would give me a headache anyway, so it’s not going to alleviate one I already have. It just seemed to make it worse. Don’t rule it out for yourself though, it really does help other people, post-tap.

Since I get chronic headaches anyway, It’s kind of hard to tell sometimes if it’s a tap headache or a regular one.

Overall, it’s been a little rocky, but most importantly, I have no signs of infection.