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.

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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.

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.

Anyhoo.

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.

Benlysta, flow study, flu shot

I noticed I had a little boom in views on here last week. I don’t know why, but thanks. 🙂

 

I had Benlysta #whatever last week. I’m losing count. But next month it will be one year. The doctor, my mom and I are all sort of on the fence as to whether it’s helping or not. Before this past infusion I was waking up in the morning like I used to, a writhing ball of pain. But then I noticed after I had it, I wasn’t waking up like that anymore. I still hurt in the morning, but not at 4am, and not on the same pain scale. Also, the itching has seemed to quiet down in my legs. At the same time, while of of that is great, I’m still unable to do activities at a normal and relatively pain-free level. I just feel like I’m not where I should be at. I’m still ruled by the sickness. I have this muscle weakness I can’t seem to pull myself out of no matter what I do. I’m also having some pretty terrible digestive issues, along with other things. My rheumatologist seems to think this points to a neurological cause, and I don’t disagree, but I wonder how much of it can be attributed to the chiari. She wants me to see a neurologist to investigate, but I’m going to push that appointment off until I see the neurosurgeon again.

I had a cine MRI flow study done on Monday. It was just like having a regular MRI, but I wore a little heart monitor on my finger. They are of course looking for a blockage, a finding that would explain a lot of things. I’m hoping to get answers on that soon. I want to know what’s going on with that before I see a neurologist. The neurologist doesn’t seem to think any of my symptoms are chiari-related, which is pretty typical of neurologists. I want to go in there and tell him what the neurosurgeon says before they go all spinal-tap on me. I don’t really want to think about possibly having another condition right now, so I’m just not.

In other-yet-still-related news, I got the flu shot. I’ve never had it before, but my rheumatologist “strongly urged” and after talking to some other people in support groups, I decided just to get it done. The idea of the flu really bothers me this year for some reason, I’m not sure why this year in particular. It’s always been a worry but it jumps out at me this year. Normally I just avoid being out in public a lot during flu-season. I’m not a Black-Friday goer, I’ve lovingly dubbed it Black-Fluday, and I’ve always tried to avoid similar situations. I’m a frequent Hand-Sanitizer user when I do actually go somewhere. I avoid touching my face, wash my hands, yadda yadda. I’ve managed to stay relatively healthy in that respect, but this year it just seems like it would be especially devastating to be put in the hospital for something that may very well be avoidable.

Having said that, my arm hurts. And so does the rest of me. I felt nothing until last night, which was more than 24-hours later. I was really tired, my heart was pounding, and I was really nauseated. Not to mention the trail of muscle spasms that went up my arm and into my back and neck. I’m unfortunately on my cycle right now too, so I’m sure some of that could be attributed to that as well. I feel OK right now, aside from the arm soreness, and typical pain to which I wake up.