BLOG ALL THE THINGS #lupus

blogallthethings

I was probably supposed to write about stuff in separate blogs over the past few months but sometimes my brain just isn’t up for it.

I had a manometry and pH study to evaluate for acid reflux in September. First I had a big tube probe thing put down my nose which was really fun, and I had to swallow water in intervals over the course of half an hour. Then I wore a smaller tube probe thing down my nose for 24 hours which was pretty awesome and I felt really sexy. The findings were rather interesting and not at all what I expected. My pH study was normal except for one event of acid reflux. My manometry however showed that I have weakeness in my esophageal muscles and “pooling” of food/liquid when I swallow. So now I’m wondering if that pooling is what is reflux-ing, instead of acid. After I eat I feel stuff come back up and I have to clear my throat for an hour and its really annoying. I just feel like I have stuff coming up a lot of the time.

I also seem to be very mucus-y for some reason. It’s in my throat and around my vocal cords all the time and it’s very annoying and uncomforable, and I just cant seem to get rid of it. I’m taking mucinex but I can’t decide if it helps or not.

I went off all the stomach meds for the testing and didn’t go back on them for a while because I didn’t feel any different. I have started taking the carafate again once at night because I still have gastritis that refuses to heal and the pain from it keeps me up all night. Unfortunately lately the carafate seems to be making me really nauseated now and last night I almost threw up my dinner.

Recently I’ve been having a lot of headaches and neck pain and vertigo again, so my neurologist ordered an MRI and a repeat SPECT scan. We were concerned that the vasculitis is making a comeback. I had them done this past week and I do not have vasculitis again. However, it came up on the MRI that my Chiari malformation is 8mm. I’ve had doctors write it off and tell me I don’t even have chiari, so it’s been on the back burner for a while. My neurologist tends not to be very quiet or humble, but he was today on the phone, so I believe he is concerned. He wants me to do another MRI with a flow study to see if fluid is being trapped by the herniation.

I’m having bad sleep apnea episodes. I am going to investigate central sleep apnea. As soon as I start to fall asleep I jerk awake. And this can go on all night sometimes, and other nights just for a few hours, or a few minutes. The severity comes and goes. An ENT told me that if you know it’s happening then it’s not sleep apnea, but that sounds dumb to me. The strange thing about it is that it doesn’t happen to me all the time, it flares, but the flares lately have been constant. I know this problem with my esophagus probably doesn’t help either if liquid is pooling when I am trying to sleep. Also, I am still dealing with chest tightness that is probably costochondritis and I know that doesn’t help the situation either. I’m still sleeping propped up. I tried to sleep flat but it gave me heart palpitations for some reason. It just didn’t feel right. Sleeping propped up makes my body hurt but I feel like I can’t go back to sleeping flat yet.

I also am getting some cognitive testing in the next few months because I have some pretty severe cognitive problems. It makes it hard to write which is probably why I haven’t in a while. My brain feels broken.

I got the flu shot for the 3rd year in a row and I didn’t die, so I recommend it if your doctor recommends it. If you have autoimmune disease or have family or friends with autoimmune disease please don’t get the nasal mist, just get the shot. The mist can make certain groups of people sick.

Other than that, my joints are killing me lately. I’m having fevers and night sweats. My headaches, vertigo and neck pain have been bad. I still pee a lot. My septum is deviated and my nose is clogged all the time. I’m still on the boring reflux diet because of the gastritis. It hurts to wear clothes. My eyeballs are inflammed every morning. I need the Wizard of Oz.

Advertisements

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.

My thoughts on #Fibromyalgia

I don’t want to offend anyone. Please realize that when I say that I think Fibromyalgia is a bullshit diagnosis, I’m not saying that your pain doesn’t exist.

Onward.

Before I was diagnosed with Lupus, about a year to be exact, the local rheumatologist told me I had “Fibromyalgia” and put me on Cymbalta. She didn’t bother to run any tests, or even really examine me. I listed my symptoms and that was the extent of her assessment. The Cymbalta didn’t help my pain.

It took until my toes were turning black for her to test for something else.

Being “diagnosed” with Fibromyalgia can be a very dangerous thing. As a person with multiple health issues, I know how easy it is to just assume new symptoms are caused by the diagnoses I already have. Fibromylagia puts the brakes on investigating other causes. It’s “mysteriousness” leads people to believe that everything they are dealing with is already being treated to it’s full capacity. 

My current rheumatologist doesn’t believe in Fibromyalgia as a diagnosis. When I first started seeing her, and told her about my Fibro diagnosis, I got “You don’t have fibromyalgia” in an “oh brother” sort of voice. 

I believe there to be many diseases that present “fibromyalgia-like” symptoms, therefore I feel fibromyalgia to be a symptom, and not a disease by itself.

I urge you not to let a Fibromyalgia diagnosis keep you from continuing investigating what is really wrong. You could have a very treatable illness and not know it. While my Lupus isn’t exactly “very treatable” at the moment, I’m on infusions that are protecting my organs. I can’t imagine the damage I would have now if I had just stuck with the “Fibromyalgia” diagnosis.

This week’s #lupus frustrations

There are a few topics I’ve been meaning to write about, but honestly, my short-term memory has been terrible lately. I’ll think about something I want to write and when I go to sit down and work on it, I can’t for the life of me remember what it was I wanted to write about. I’m not sure what’s causing my memory to just void everything. I’ve been stressed out a lot lately, my Benlysta is wearing off and I’m due for another treatment, and I was in PMS mode last week (not bitchy, just achy) All in all I feel like I’m just not taking in information, and you can’t remember what never went into your brain in the first place.
I’m having a terrible time focusing. Even right now I feel like I have to take breaks from writing every couple minutes because my brain is all over the place. I haven’t been able to read and I’m even having a hard time watching movies because I can’t focus. There are a lot of activities I’d like to do throughout the day that I just can’t do because I can’t focus. It’s really an awful feeling. No doctor has really stepped up to help my focus issues. It always seems to be something that isn’t important. But it’s something I struggle with all the time, and have been struggling with since about 6th grade. It’s getting old.
I went to the neurologist to talk to him about my ‘neurological’ symptoms. I feel like he brushed most of what I said aside, and was ready to blame everything on my lupus. That .always makes me irritated, because if I have some other type of disease activity going on, I want them to be looking for it. It’s easy to just assume it’s the lupus. I’d rather be on the safe side than the sorry side. I never liked this particular doctor anyway, I just went because my rheumatologist told me to.
He’s going to be doing an EMG Nerve Conduction Study to see if I have peripheral neuropathy from the lupus. I’m not looking forward to the test, I know it entails needles and electrical currents. It won’t be the worst test I’ve ever had done but I’d really rather get it over with. This doctor likes to schedule everything 2 weeks out for some reason. I don’t like waiting. I’m an impatient patient. I want it done and I want to know the results as soon as possible.
He told me I should go see a GI for my digestive motility issues. I’m not in a hurry to do that. If my EMG shows nerve damage, than there’s no doubt I have nerve damage that involves my stomach too. My stomach issues come and go. Some days I can eat a whole plate of food and some days I can barely swallow. I can just imagine going in to the GI and having a bunch of unpleasant tests done and have them tell me everything is normal just because my stomach decided to work that day. Nope, not doing it.
If I do have nerve damage, the rheumatologist will probably switch me from the Benlysta to something else. I used to be afraid of that idea but the Benlysta isn’t helping me. I feel awful. I wake up every morning feeling like I got beat up the day before.
With the Chiari Malformation stuff, I’ve decided that the specialist who deemed it ‘not chiari’ doesn’t know what he’s talking about. I’m going to get my records and mail them in to other specialists and see if they’ll take a look. My cerebellum is herniated 6mm and my headaches are unbearable. You do the math.
I probably sound like I’m writing from a place of frustration, because I am. I am absolutely frustrated. I feel like I’m not getting anywhere. I thought maybe this was a feeling I would be able to shake in a short time but it’s not going away. The doctors taking their sweet time isn’t helping either. What might be a month to them is an eternity to me. A month of sitting on the couch waiting to feel better that I’m not going to get back. I’m tired of the beating around the bush, and the maybe’s, and the tests, and the we’ll see’s. I’m tired of the ‘I don’t know why you feel awful’ and the ‘you should be feeling better’ and the ‘well it must be the other disease’ and the ‘your other doctor should treat you for that.’ I’m tired of tests coming up inconclusive. I’m tired of doctors telling me I don’t have something and then not trying to help me figure out whatever it is I do have. I’m tired of being pushed around by doctors like people who work at home depot “Nope that’s not my department.” Some days I think I’d just stay in bed if it didn’t hurt too much to lie there.

Congrats Red Sox. Don’t know what I’d do without you.

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.

Benlysta #9 and some headache stuff

I had my 9th infusion on Monday. I felt OK during, but I’ve been pretty tired the past few days. It’s a give-in that it will make me feel like that, it just seems a little worse than usual. I can’t honestly say whether I feel “better” from it or not yet. The pain from the Chiari Malformation overshadows everything else. I can tell you that I don’t wake up in the morning feeling like I got hit by a car anymore, and I have days occasionally where I have a bit more energy, but I’m so focused on the intense headaches, I guess it’s hard to gauge what my lupus is doing. It doesn’t seem to be attacking anything, which is the important part.

There is one area of concern, though. My doctor informed me that my white cell count typically goes up and down, and that my blood test results from last month show that it is low. I wish she had pointed this out to me earlier. I feel like she doesn’t tell me things sometimes. I will call on Monday to find out what the results are for this month. I hadn’t been sick with a cold or anything, so it doesn’t really make sense. Wait and see, as usual.

My consultation appointment to see the neurosurgeon is finally set for next Friday. I get to see the head honcho instead of being passed on to one of his colleagues, so my case is being taken pretty seriously. It’s a 90-minute appointment, so I’m assuming it will be an assessment of all my symptoms, and possibly having some MRIs done right there, which would be nicer than the usual “go get an MRI in a few weeks and come back in a month to see the results” shit. I am so incredibly fed up with waiting forever. In the mean time I get to put up with agonizing headaches and a list of other crazy things. -End Rant-

My main concern is my white cell count and how that is going to impact when I can schedule my surgery. I’m already unsure when to schedule it as it is. It’s summer, and the summer heat makes me terribly sick. I am not crazy about the idea of recovering during the heat. But at the same time, I am also not crazy about waiting months to have surgery and continuing to feel the way I do, “eating the elephant one bite at a time”…but my white cell count will probably push it off til winter anyway. All in all, winter is the best option. But I don’t know how I am going to stand to wait that long, unless they can give me something to help deal with the pain and pressure and the fact that I want to throw up every time I eat, until winter rolls around.

All in all, it will be nice to talk to the NS and get some of these questions answered. I’m pretty anxious to see him.