No use for an alarm clock

I’m tired of all the things I have to answer to before the sun is even up. At 6am I have to take my first dose of steroids for the Addison’s (No, not “make your balls smaller and muscles bigger” steroids) but I’m probably up before then. By the time 6am swings around, I’ve been up for 2 hours listening to music because I hurt everywhere. My nerves are on fire. The only thing that helps with this pain is the tramadol, and lately even that’s been iffy. The problem is even though it provides some relief, it also keeps me awake like a cup of coffee. So I can lay there and hope I fall asleep even though I hurt (which sometimes actually happens because I’m so used to it) or I can lay there and feel a little better but feel like I just drank a Monster.

I’ve been getting pretty severe nasal congestion lately, and that paired with the dry mouth from the Benlysta sometimes makes me wake up in a panic. I can’t breathe, and I’m so thirsty I may as well have been stuck on some fucked up island for 3 days. Good luck sleeping after that.

I am also having a problem with acid reflux. When I wake up in pain I also wake up with an angry burning stomach, and sometimes a sore throat. The sore throat could be caused by lots of things, like the Lupus, or allergies, but I think sometimes it’s the acid too. The problem is that there are some medications with which I cannot take antacid. Some medications make it worse, too. So I have to take meds and temporarily make it worse for a half hour til it’s been absorbed and I can finally take the antacid. I have gotten up to eat food before, but that’s a pain in the ass. Once I’m completely awake from doing something like that, there is no going back to sleep.

The sun coming up is a huge factor in making me wake up early. If it’s not pitch black in my room, I don’t sleep. I’ve managed to remedy that with a sleep mask, for the hours in the morning that I actually do sleep.

I think I’ve wrote about the itching before, that keeps me up too. My leg pain and restlessness is sometimes accompanied by itching, which I perceive to be  nerve-related. Some people suggest benedryl but it’s not an allergy, and I don’t have good reactions to benedryl anyway.

Sometimes when I take meds that make you drowsy, it causes me to have sleep apnea. So rather than knocking out, I wake up every 5 minutes in a panic because I stop breathing. The drowsy effect seems to depress my respiratory function. The weird thing is, I still have to take a tiny dose of something to make me sleepy. If I don’t take anything at all, I will lay there for hours without ever getting tired, and the next day I will have heart palpitations all day from being without sleep. I’ve been afraid to take the hydroxyzine for the itching because I don’t know what it will do to my breathing, and that means I have to waste an entire night of sleep to find out. And I have to plan on taking it, I can’t just take my usual dose of sleep aid and then wake up halfway through the night and take the hydroxyzine when I am itchy, because combos of meds make me have the apnea too, even if they are hours apart. It’s a drag having the sleep apnea because I am so tired, but I have to get up and occupy myself for a couple hours to make it go away so I can actually sleep. It’s a constant fight to balance everything.

You know what the bitch of all of this is? The mornings I actually have to get up early to go somewhere, are the mornings my body is like “Hey! I’ll let you sleep in today!”

This week’s bullshit.

My cine MRI flow study is scheduled for October 7th. It’s similar to a regular MRI but you wear a cardiac monitor that will display the pulsing of CSF fluid in your cranium (spinal fluid pulses with your heart). They’re looking for blockage, most likely in the cerebellar/posterior fossa area. Also, I was surprised today when they said the doctor also ordered another MRI of my C-spine. I’m not sure what he is looking for there, I would imagine he is checking out the pocket of fluid there again, but I also have a slightly bulging disc there too. He pointed it out to me in July but said it wasn’t anything to worry about. I do get these electric shock pains in my neck sometimes that run down my back, like a nerve is being pinched. So if the bulging disc sits on a nerve sometimes, that would explain it. It gets worse on hot days, which makes sense, my muscles tense up more on hot days.

I wish it was a closer date than Oct 7th, but that was the soonest appointment they had with nurses available. I hate waiting around for answers. I’m really not good at dealing with everything being up in the air and not knowing what comes next. I feel like I will be mentally pacing back and forth until then.

In the lupus department, my rheumatologist said that my blood work is the best it’s ever been. My white cell count is up now, too. I’m still having nerve pain, tingling, numbness, and itchiness. The itchiness is the worst of it. The doctor is going to give me hydroxyzine for it. She asked me if I had tried benedryl and claritin, but I tried to stress to her that it’s nerve pain and not allergies. Pain killers make it go away, but I can’t take them at night because they make me wired. Getting my point across to doctors can be really frustrating sometimes. I’m me. I know what is going on with my body most of the time. I feel like they look at me like I have 3 heads when I tell them my itchiness is nerves, and my lungs hurt because of acid reflux. But it’s true. It’s not that hard to figure out.

All in all, my rheumatologist has been driving me nuts. She means well, but she’s always been a pain in the ass. She actually asked me to call the pharmacy to tell them to call her so she could tell them to fill the prescription. That’s the weirdest request I’ve ever heard, and the pharmacy thought it was weird too. Now I have to fuck around playing phone tag to make this prescription happen. “Tell them to call me” is her favorite thing to say to me. I get tired of doing her job for her sometimes, especially because nobody ends up calling anybody. I know she is busy, but she can’t possibly be so busy that I have to call people and tell them to call her. I don’t have the energy for it.

The thing about suggesting benedryl was irritating. Doesn’t she think I would have tried that on my own first, before calling her and being on hold forever? She makes me feel like I am a pain in the ass sometimes. I gotta be honest too, I don’t want another pill. Pills don’t help as much as one would think, they just trade a symptom for a side effect, and you have to decide which one is easier to deal with.

I thought I was getting sick again over the weekend. The migraines flared up, my body temp was outta whack, and my pain everywhere peaked. Turned out to be a lupus flare instead. It feels like a cold when it first hits you. I’ve been pretty tired, and I haven’t been able to play my mandolin. I’m pretty stressed out. It’s probably triggering my flares.

Back from Vacation.

My “plane” landed today. I got a call from the neurosurgeon, and he said that there has been a change on my MRI. What specifically, I’m not sure. He didn’t elaborate, it’s hard to do over the phone when he can’t show me. He wants me to have a cine MRI which measures the flow of cerebrospinal fluid to check for blockage.

If you’re new to my blog, I’ll summarize. Last summer, I had an MRI because of my lupus, to check for lesions on my brain that can be caused by lupus. That came back negative. But the report found that I have Chiari Malformation, a brain condition where the back of your skull doesn’t grow quite large enough to accommodate your brain, and so the bottom of your cerebellum herniates down into the spinal column. The #1 complaint are the really bad headaches it causes, other symptoms are largely neurological and consist of tingling, numbness, loss of balance, forgetfullness, issues caused by brainstem compression like sleep apnea, heart palpitations, fluctuating body temperatures, and digestive issues. It becomes even more complicated when your section of herniated brain blocks the flow of CSF fluid. This can cause brain damage, increased intracranial pressure and intracranial hypertension, and a pocket of fluid can form within the fibers of the spinal column, called a syrinx. It forms because the trapped fluid has nowhere else to go. A syrinx can also have it’s own set of symptoms, which include tingling, numbness, loss of coordination, and eventually paralysis if it isn’t drained. I’ve had really bad headaches for the past 5 years, and doctors just deemed me a “headache person”. I too believed that there was no real cause. Perhaps it was migraines, or tension headaches. Coincidentally, I had read about chiari months before my MRI, and thought, “hey, those symptoms sound like me” but obviously I didn’t press the issue, because doctors look at you like you’re nuts when you go in their office already diagnosing yourself. Needless to say, when the Chiari came up on the MRI, I wasn’t really surprised, it was more of a “Holy shit, I was right.” I went on to see a neurologist, which I learned is a mistake for Chiarians. Neurologists don’t really know much about chiari, and they tend not to ever treat it aggressively. He wanted to just monitor it. I wasn’t OK with that. I was in so much pain all the time, and no one was doing anything about it. From there, I basically went over his head and saw a neurosurgeon. The guy seemed to know his stuff, but he was in a hurry, and only spent 15 minutes talking to me. He told me that surgery is based on symptoms, which I have, and to come in and get it done whenever I felt like it. So from thereon out, I planned the surgery in my head, talked to other people with chiari, and just readied myself for the biggest undertaking of my life. It terrified me, but it also terrified me not to have surgery. And in the mean time, I’m trying to put my lupus in remission with a new medicine. About 9 months went by, and in July I went to see a neurosurgeon who is a specialist in Chiari Malformation and Syringomyelia (syrinx). He did a neurological exam which involved a lot of poking and prodding, and bending my joints. I passed. I felt all the pin pokes, the tuning fork vibrations, the cold metal. Reflexes were good. He looked in my eyes to check for intracranial pressure. Nope. We looked at my MRI together. It was an MRI not of my whole brain, but of the bottom half of my brain and my cervical spine. In short, I heard “Your cerebellar tonsils (yes, that part of your brain is called the tonsils, nothing to do with your throat tonsils) are low, but that does not indicate chiari malformation. Your syrinx is actually hydromyelia, a pocket that occurs during childhood growth and sometimes still appears in adults. Your headaches occur because you have a long thin neck and it’s putting a lot of strain on your muscles to hold up your head” I was shocked. For a whole year I was readying myself to hear “You need surgery, how does next month sound.” I was in disbelief, but I was also angry. Why couldn’t someone have told me sooner? I had a lot of mixed feelings. He ordered another MRI I think just to make me feel better, and to make sure he was doing the right thing.

I had the MRI last week. It was a pretty quick 20 minutes or so, and no contrast. And today, I get the phone call. He missed something, apparently. Now I’m right back where I was. Thinking about surgery, and shaving my head, staples, and worrying about how my lupus is going to react, and the potential for infection. I’m back to imagining the whole process. I’m back to wondering what happens if they fuck it up, and wondering if I’ll need more than one surgery. I’m back to wondering how long it will be before I can get my life back together again.

That month and a half of thinking I was misdiagnosed was a nice vacation.