Neck problems #lupus #ra #stillsdisease

My neck has been bothering me for a few months, but it’s been especially bad this past month. I’ve had some arthritic flare that makes me have headaches that make my neck, jaw, teeth, and nasal passages hurt. I get vertigo when I look down with my neck. It’s been going on for the same amount of time as my neck pain, and is definitely related, because when the pain is bad, so is the vertigo. My neurologist insists it could be a problem with my eyes but I don’t get vertigo when I look down with my eyes, I get it from bending my neck downward. The pain and vertigo have been pretty difficult to deal with. I got vertigo from looking down at records at a record store, and I had to leave. I get it at the library when I’m looking down browsing books. It’s really hard to be on the computer, and I definitely can’t look down at a book. When I get my infusions, I get bored because I can’t look down to read. I lose my balance sometimes because of it. I haven’t fallen yet but I worry about it.

I know the vertigo is partly related to my neck pain because when I wear a neck brace, it makes it feel better. Some doctors believe you can get cervical vertigo, inflammation in your neck that presses on nerves and makes you dizzy. That’s how it feels to me.

I can’t wear the neck brace all the time because it makes my back and jaw hurt.

It’s hard to do stuff when you’re all wobbly. Sometimes I catch myself “holding on” like the room is spinning. It makes me feel lightheaded and it’s been especially hard to concentrate lately. It’s also been hot here which seems to make it worse.

Sometimes walking makes it feel a little better. I think sitting is the worst for it. I usually feel better if I can lie in bed on my side.

I have the headaches with it, and those by themselves are bad enough. I’ve had a lot of nasal pain lately, which could be a side effect of the Actemra. Sometimes it’s impossible to find a comfortable position to be in.

I’m pretty tired of the pain and the spins. I have it every day, for most of the day. Right now I’m kinda just doing the wait-and-see-if-the-actemra-works thumb twiddle.

I’m bored sometimes. You don’t realize how many things require looking down until you can’t. I want to do some painting and drawing. I tried to crochet yesterday. I can play video games alright despite the vertigo, as long as I prop myself up a certain way. I can watch TV usually. I’m on the computer less. Doing anything for too long can be bothersome. I’m trying not to get too frustrated about it. Some days are better than others.

Some of my other joints are flaring too. My feet are bothering me a lot. They ache and they get a fever rash that really makes my skin burn. My knees are bothersome too. My hips have a fever most of the time. I have some skin discomfort sometimes. I still have the daily fevers which bothers me whenever the ibuprofen wears off, which is morning, 4pm, and before bed. Sometimes they bother me even when the ibuprofen hasn’t worn off. Summer isn’t helping either.

My power was out for a couple hours today. It made the house hotter than usual. A water pipe broke and flooded one of those sidewalk grates that houses electrical stuff. These guys had to get out all the water with a vacuum thing. When the power went out, my house went dead quiet, and it scared my dog and he ran outside. He wouldn’t come in for a while. I sat outside for a while just to be in the cooler air. Everything is fine now. I hope it doesn’t go out in the night because I won’t be able to sleep.

July blog #lupus #stillsdisease

I had my 4th Actemra last Tuesday. I told them I didn’t want Solu Medrol with it this time. That has honestly never helped me. It actually seems to make my pain worse. It didn’t help the fevers either. The other night my feet and knees were on fire with a burning hot rash. All my joints have been hot, and I’m just feverish in general. I got up early today because I was too hot to sleep. My temperature is usually around 99.1-99.8 F which isn’t high but apparently it’s enough to interrupt my sleep. It’s strange because taking ibuprofen or tylenol don’t seem to help that much. I’m not feeling anything with the Actemra yet. Maybe I’m not supposed to. I’m still waiting until the 6 month mark, but so far I feel absolutely nothing. I’m still easily pained and easily fatigued by the simplest activities. And I’m too friggin’ hot.

My neck pain and headaches have been really bad. The neck pain turns into stiffness which turns into vertigo. I’m having a really hard time with range of motion. I still can’t look down without getting the spins. I feel lightheaded most of the time. Wearing a neck brace seems to help. It’s not very comfortable though.

I had the EEG the Friday before my infusion. The office fucked up and didn’t tell me that I was supposed to come in sleep deprived so that I’d be asleep while they did it. It was a giant waste of time. I guess one of the staff (the one who has been rude to me) was in a spat with the EEG technician and they weren’t talking to each other, because some people never leave high school. I feel like she sabotaged my test by not telling me how to be prepared for it. Of course I’m just speculating but I wouldn’t put it past this woman to do such a thing. She orchestrated a big lie last time I was in the office to cover her own ass because she forgot to give me orders for a blood panel. She treated me like I was too lazy to go, in front of the doctor, when I didn’t know I was supposed to go at all.

On a side note, I am not one of those “I can sleep anywhere” people. I can’t even get to sleep in my own bed at night when I want to, so even if I did come in sleep deprived, I probably wouldn’t have slept for the test anyway, I would have just made myself feel like shit by not sleeping and then dragging myself to Los Angeles.

I’m probably not having seizure activity. Neurology was my first place to go with my symptoms since I felt like they reminded me of some episodes I had when I was a kid. We talked about doing a 5 day hospital stay to monitor for seizures but I don’t think I’m going to go through all that. My episodes last too long to be seizures.

I realized that my episodes at night are at least partly due to anxiety. I seem to get short of breath when I’m trying to fall asleep. It’s totally involuntary, I don’t really do anything to stress myself out before bed. I feel like the panic comes to get me when I’m the most relaxed, actually. I’m a wired person. I can’t even nap anymore. If I don’t take something at night to make me sleepy, I’ll never sleep. I don’t drink coffee or alcohol which I know can mess up your sleep schedule. I know that just in the past few years my anxiety has gotten worse because my pain has gotten worse. My pain makes it so I can’t sit still. I want to take my body off like it’s a big itchy sweater. Obviously pain is worse than an itchy sweater, but I don’t know how else to explain it. It just drives me nuts.

I’ve got some other things going on outside of my health adventures that are adding to my anxiety. I try really hard not to allow myself to take certain types of stress on, but I think sometimes I can’t help it. I told my rheumatologist about my stress, my shortness of breath at night, and that I haven’t been sleeping. I usually take xanax but he said that just relieves the symptoms and not the actual problem. He gave me Seroquel. He said it would help me feel relaxed and sleepy. It’s usually used for mood disorders and schizophrenia, but can also be used in my case for an off-label treatment like anxiety or insomnia. I’ve been taking it for 5 days now. The first 2 nights it made me feel really drugged. It helped me feel relaxed and sleepy, but it made my body feel very heavy and off-balance. I was a little worried I might fall when I got up to use the bathroom. I felt a little dragged out during the day. By the third night, it didn’t make me feel so drugged. It actually seemed like it wore off around 4am, because I was awake and wired. I didn’t really feel as tired during the day. I almost feel like even though it’s helping me at night with anxiety, that it might just be pushing it off until morning, because I’m finding myself feeling more anxious during the day lately. I’ve only been on seroquel for 5 days though, and I’m sure there’s a period of adjustment. It’s also hard starting a new medication when I have my period because everything gets thrown off from that, so I can’t really tell how something is truly effecting me until I’ve been on it for at least a month.

It’s been raining here. We actually had thunder here, which almost never happens. The rain doesn’t really make my pain worse. I feel much worse on the days when it’s 90 degrees and 7% humidity. It’s muggy and sunny today. I wouldn’t mind if it rained more.

I’ve had a rash over the backs of my knees and inner elbows since March. I also have it under my arms. After my 3rd infusion, it flared. Just in the past few days it has peeled and gotten lighter. I’m pretty sure it’s eczema. I sent pictures to my dermatologist a couple months ago but she just blew me off and said it was a “fleeting lupus rash”. My rheumatologist said lupus doesn’t cause itchy rashes like this one. I’m not worried about it but it is annoying that it’s on my inner elbow where I prefer IVs to be placed. It seems to be fading for now. I have a lot of general skin irritation that doesn’t always come with a rash. Some days I can’t wear anything besides sweatpants because it’s just too uncomfortable.

I’m still taking the Dexilant for acid reflux. I’m on 60mg 4 times a day, which is a huge dose. I take a double dose of magnesium so it doesn’t get low. I backed off the Dexilant to 60mg twice a day because I was getting terrible stomach cramps that were lasting all day. The acid came right back and was keeping me awake at night. I went back up to 4 times a day because I didn’t feel like dealing with all the annoyances the acid causes, like the pain, losing sleep, and gross taste in your mouth all goddamn day long. It seems like as long as I take miralax and “keep things moving” I don’t get as crampy. I had a bad crampy day when I was only taking it twice a day, and that’s why I decided to go back up on the dose. The magnesium helps too. I guess I’m just gonna try to deal with it, because I can’t have grinding stomach acid waking me up at 4am.

I straightened up my room a little yesterday. I was pretty tired after. I didn’t do anything crazy, just put stuff where it goes. I don’t understand why I feel like I have no endurance. My muscles get tired so easily, I get short of breath, and a headache from doing anything that slightly raises my blood pressure. I shouldn’t have to recover from putting shit in a drawer. 25 going on 90.

I want to sit and draw but my back gets so tired so quickly. And I get the spins when I look down.

Some part of me misses taking the pamelor for my headaches. It made my concentration terrible and fucked up my mood but I didn’t have a headache all the time like I do now. I didn’t get a headache from bending over. Now I just feel like I can’t do anything because I have a headache. I’m probably gonna go see a new neurologist, since my current neurologist has a witch for an assistant, and since he gets bored with headache patients. I guess I’m just ready to try the next thing, because this headache all the time shit sucks.

Hot, bored, and skeptical. There’s a giant bag of animal crackers with my name on it.

TTFN

Endoscopy results #lupus

I met with my GI today to talk about the endoscopy I had 2 weeks ago. He showed me some pictures he took during the procedure. I do not have any infections. The tissue samples showed mild chronic gastritis and esophagitis but there is no evidence of pre-cancer. He showed me the mild inflammation in the pictures. The tissue samples also showed that I do not have Celiac Disease or serious food allergy. He showed me the hiatal hernia and how it causes the lower esophageal sphincter to not close completely. This is why I have acid reflux.

We are going to try to control it with diet first. I have already eliminated most, of not all, acidic things from my diet because they make me feel horrible. Even though I don’t have food allergies, it is possible I could still have a gluten intolerance that is causing some of the gastritis and esophagitis. I’m going to give up gluten for a few weeks and see how I feel. It won’t be that hard for me. I eat pretty bland anyway. I’ve just gone shopping at Whole Foods and bought stuff made with rice or corn instead of wheat. I’m trying some different vegetables for variety.

Ultimately, it would be great to see a dietician. Between the acid reflux and the salt and sugar sensitivity, it’s been really hard to know what to eat. My GI wrote up a prescription in hopes of getting the insurance company to realize that it’s medically necessary. A lot of the time, a doctor like a dietician isn’t covered by insurance. Insurance companies have a very “Well, you don’t really need it…” attitude when it comes to certain fields of medicine. Things like massage and a nutrition plan could really help people be healthier but since people can get by without it, it’s not covered. If only they realized that letting their customers get by instead of helping them get well actually ends up costing them more money.

I’ve been making an effort to sleep on my left side more. It’s hard when you have chronic pain to sleep on the same side all night. It does help keep the acid down at night though.

The doctor told me that my hernia and acid reflux could be responsible for my heart palpitations and shortness of breath. I’ve had every test under the sun to figure out what has been causing those things, and so far they’ve found nothing. I do notice a relationship between eating and those symptoms sometimes. Sometimes I seem to get it for no reason too.

I’ve been weaning off the Pamelor (migraine med) for a week. Weaning off antidepressants blows. I did notice I could concentrate a little better for a few hours yesterday. I had a headache last night. It wasn’t too bad though. If it was a bad one, I’d still have it.

That’s it for now. My next Actemra infusion is May 12th.

Some stuff #lupus

I went to see my neurologist today. The ENG I had in March was normal, which means I don’t currently have any Lupus stuff in my inner ear. I get really dizzy when I look down, like when I’m reading or working on something. I was having a hard time occupying myself last week during my Actemra infusion because I was getting dizzy from looking down at a book or tablet. He suggested that I see a neuro-opthamologist to see if it’s a problem with my eyes. I feel like it has something to do with my neck, but I’ve been wanting to go to an opthamologist for other issues anyway so I will have the specialist investigate my vertigo too.

I’ve been taking Pamelor for migraines since last August. My neurologist has increased the dose twice since then. In the beginning it was messing with my mood a lot. I just didn’t feel like myself. Increasing the dose made my mood better, and I’ve been taking 30mg for a few months now. It’s hard to say whether it has really helped my migraines or not. I still get really bad migraines that aren’t helped by my other headache medicines. I get headaches whenever I have heart palpitations. There are foods that still trigger headaches. I can’t exercise without getting a headache. I’m having a problem with the Pamelor affecting my concentration. It’s really hard for me to do anything. Everything feels overwhelming. I feel like I’ve been in a worse brain fog since being on Pamelor. It has affected me so much that I’ve decided I’d rather have more headaches than continue with the Pamelor brain fog. I’m going to start tapering it off and in a couple weeks it will be out of my system.

I can do art with a migraine, but I can’t do it with brain fog.

The physician’s assistant at my neurologist’s office was extremely rude to me. I let it irritate me too much. Something got messed up, because I was supposed to get some blood work done but no one ever mentioned it to me or gave me an order slip for it. She acted like I just never bothered to go do it. I think she forgot to order it, and was covering her ass. Rather than admit her mistake, she was rude to me. Also, she couldn’t seem to decide if it was blood work from last August or if it was supposed to go with my ENG in March. I don’t see why blood work from August would suddenly be an issue now. I’ve been to see the doctor 3-4 times since then. Not to mention that a CBC and chem panel from last August would no longer be relevant now, in my opinion.

I guess the reason her attitude irritated me so much is because my whole life is doctors, treatments, pills, and tests. I’ve never “forgotten” to do anything before. I’ve never been so lazy that I didn’t show up for a test. I am always eager to get tests done because I want to know what’s wrong and what the next move is. It’s not like I’m skipping out on tests because I’m going on a booze cruise or joining a biker gang or whatever it is that test-skippers do. I’m pretty proactive when it comes to appointments. I always have my shit together, so if there was a mistake, it’s on her, not me.

I had my Actemra infusion a week ago tomorrow. I feel like crap. I’m really tired. I’ve also been nauseated, which is another side effect. I guess I just feel like I’m waiting around to feel better, kinda like when you have a cold or something. It made me really achy at first, and I had a horrible headache. It feels like the infusion pisses off your diseases at first.

I am also still recovering from the endoscopy. The doctor took a lot of tissue samples from my esophagus and I’ve had some pain there. I’ve also had pain from not taking the Duexis. The Duexis really controls the existing inflammation, which has helped with the pain and acid reflux. It sounds counter-intuitive that a form of ibuprofen would make my stomach feel better, but the inflammation is so bad that it’s actually helpful. When I don’t take it, the pain gets pretty bad, and it gets hard to swallow. I’ve started taking it again but it will take a few days to get back on track.

I’ll be in next week to see my gastroenterologist to talk about the endoscopy and what he found in the tissue samples. I’m finished with appointments this week, which is nice. I’ve had appointments every week since the beginning of March. It’s good to get things taken care of but it’s also exhausting. The trips to the doctors and the testing and the treatments are tiring and I need a break.

I have eczema on the backs of my knees. It’s pretty uncomfortable. It itches and burns, and sometimes it wakes me up at night. I’ve been using cortisone cream. I still have a burning rash on my neck and a little patch under my arms. It seems like it’s all eczema. It’s all uncomfortable.

Ta ta for now.

This week #lupus

On Friday I had the MRI on my abdomen/pelvis to check out my adrenals. I didn’t have the gadolinium contrast because they think I might be allergic. I had a rash once after having it for a brain MRI. Getting MRIs seems to give me rashes for some reason, but the hospital would rather err on the side of caution. I still had a rash after this MRI. I had a rash before it, but it was worse when I was finished. This particular scan was extremely loud, and I had to hold my breath for 10-second intervals. I had already been dealing with a migraine when they started the scan. It wasn’t a pleasant experience. The next day I felt like I got a good ass-kicking.

I’m not sure when I’ll get the results of the MRI, but hopefully this week. I’m really hoping for some answers.

I’m starting the Actemra infusions on Tuesday. The process sounds just like Benlysta. I’m anxious to get it going. I’d really like to start feeling better. It will take up to 6 months to notice improvement. I haven’t gotten infusions since changing to my current doctor. His office actually has an infusion center, so it will be nice not to be crammed in a small room with shitty furniture.

I’m having the upper GI endoscopy on Thursday. I’m looking forward to getting it over with. The doctor is looking for eosiniphilic esophagitis, inflammation in my esophagus caused by an allergy, which could be responsible for my acid reflux and trouble swallowing. They will be giving me propofol for sedation and 100mg IV hydrocortisone before the procedure and 50mg after to support my Addison’s disease.

I’ve backed off on the Florinef to a quarter of a tablet. I stopped taking it completely for about 2 days like the nephrologist said, but I felt so tired. My endocrinologist doesn’t think I should stop it completely anyway. My blood pressure numbers are a little better but I am still experiencing all the high blood pressure symptoms, the dizziness, heart palpitations, and shortness of breath. I still can’t eat any salt. I’m still feeling really tired too.

I’ve had to stop taking Duexis (ibuprofen) this week to prepare for the endoscopy. The doctor will be taking tissue samples. Ibuprofen thins your blood and can cause excessive bleeding, so I have to stop taking it for 5 days before the procedure just to be safe. So far, my joints don’t hurt anymore than usual, but I couldn’t sleep last night because of the fevers from the Still’s Disease. I’ve been taking Tylenol more regularly to help the fevers and to ward off pain. So far I haven’t had a major headache yet but I am worried about it. I would guess that most, if not all, my pain is caused by inflammation. Ibuprofen is an anti-inflammatory and Tylenol is just an analgesic, so I don’t know how well it will continue to work throughout the week. When my GI doctor told me I couldn’t take Ibuprofen my heart sank a little. It’s probably the only thing that keeps my symptoms bearable. If I do get a migraine this week I don’t really know what I’m going to do to treat it.

I’m more stressed out than usual. I’m also a lot more tired than usual. I’m hoping once this week is over things will settle down. I’ve been to a lot of appointments in the past 2 months. I’m glad to keep things moving along but the trips are pretty tiring.

Treatment plan #lupus #stillsdisease

This morning my rheumatologist called to let me know that I’m all clear to start a new treatment. I’m going to be doing Actemra infusions for Still’s Disease. It’s another biologic, and the IV infusions will be once a month, much like the Benlysta I was getting last year. Actemra can also be injected at home but he said that it’s not as effective, and I could potentially see results sooner with the infusions. The side effects sound similar to Benlysta, which wasn’t bad at all. It takes 3-6 months to see improvement. I’ll be starting them sometime next month.

We are trying the Actemra first because the Kineret is a daily injection that can be painful for some people. I don’t mind getting infusions. I’ll be glad to finally be on a treatment plan.

I talked to my Gastroenterologist today. One of my blood tests said something about “borderline Salmonella” and he explained that it was just the existence of the antibody, not the disease. That means at one point I had Salmonella but I don’t have it now. I’ve moved the endoscopy to the middle of April. I have to work around the migraines I get from my period, because I’m not supposed to take ibuprofen for 5 days prior. It’s going to be really hard, since all of my pain is caused by severe inflammation, including my headaches. I’ll be glad to get the whole thing over with.

I had the ultrasound done on my kidneys on Friday. They’re checking the blood flow. The technician said that everything looked good, but I’ll get a more complete assessment from the doctor on Friday. They’re making sure my high blood pressure isn’t caused by narrowing arteries around my kidneys. I’m hoping the nephrologist can point me in the right direction for my high blood pressure. I had to fast for 6 hours before the ultrasound. I was alright with not eating, but drinking minimal amounts of water in that time set me back a few days. For some reason it made me really tired. I felt like I spent Sunday recovering from it. The same thing happened to me when I had the spinal tap. My stress reaction to procedures is usually delayed by 2 days. I stress dosed my hydrocortisone and I felt better after.

I have a migraine right now and one of my hands is feverish from the arthritis. Typical night for me.

Exercise. #lupus

“Do you exercise?”

Doctors ask me this a lot. They don’t seem to reserve their judgement, either.

Well, it depends on what you consider exercise. Something that’s not necessarily exercise for someone else could be considered exercise for me. Do I bust my balls at the gym? No. Do I run at the ass-crack of dawn every morning? No. Do I dress like Lance Armstrong and ride my bike in the middle of a busy street like an asshole? No. Do I carry in groceries? Yeah, sometimes. Do I walk the dog? Yeah, once in a while. Do I take the stairs instead of the elevator? When I’m feeling up to it.

I guess I don’t know how to answer their question. Do I do something that’s considered exercise by societal standards? Am I in an exercise class? Does what I do have a fancy exercisey name? Does what I do require a fancy exercisey machine?

Don’t take what I am saying the wrong way. I don’t dislike exercise. I come from a pretty athletic family. My mom has been teaching Jazzercise and dance aerobics my whole life, and I was able to learn proper fitness technique at a young age. My older brother was on the track and cross-country teams in high school, and has extensive knowledge in sports medicine. My younger brother just started a new exercise plan at the park and also hikes regularly, and he played baseball for the Y.

I myself use to be on the track team before the lupus days. The 400m and high jump were my main events. I wanted to do what my brother did, run for the high school team and do 5ks on the side. I didn’t get to do that, though. My freshman year of high school I had to get a PE waiver because I was sick, and so I had an extra academic class in place of PE, which meant extra homework. Oh boy.

It’s not as if I don’t try. There are exercise activities I’d really like to enjoy regularly, but I’m just in so much pain all the time that I can’t. I’ve tried tai-chi, and yoga, both which I liked well enough, but I was so sore for the next three days I couldn’t move. The pain affected my sleep. I seem to have this soreness from exercise that is exacerbated by Lupus inflammation.

I also have limits with my range of motion, and high blood pressure. Because of the damaged blood vessels in my brain, I can’t do anything that requires bending over without getting a migraine, especially during exercise that raises blood pressure. Sometimes doing anything even remotely exertional gives me a headache because it makes my blood pressure so high. When I already have a migraine, it’s so sensitive to my blood pressure that I can’t get up to go to the bathroom without making the throbbing worse.

The pain and soreness I get from exercising makes it even harder to do daily activities. I never seem to “get used” to exercising. The amount of inflammation people with lupus experience can actually result in significant muscle weakness.

I’ve explained all this to the doctors yet they still act like part of my problem with how sick I am is that I don’t exercise. Or that I don’t do what they consider exercise, rather.

So if anyone can explain to me how I am supposed to exercise with high blood pressure, a fever, daily migraines, and a disease that causes its own inflammation, and makes existing inflammation even worse, I’m all ears.

In the mean time I’ll keep exercising my patience.

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.

What’s next #lupus

I went to the rheumatologist Tuesday. I’m stopping the methotrexate injections since it’s not helping anything. I told the doctor that I didn’t feel better, that I felt like it just put my fevers on a different schedule. I’m still getting the sunburn-like rashes. I am still getting the swelling and itchy rashes over my joints when they hurt. My migraines are still bad. I have a whole array of other things that I haven’t even addressed yet because the list is so goddamn long.

He wants me to go see dermatologist for the rashes to get some tests run. He said it will help to paint a better picture of the autoimmune activity that is going on. He also wants me to see an infectious disease specialist to rule out any kind of infection that could be causing symptoms.

He took some blood and urine to make sure the methotrexate didn’t cause me any problems.

I know he is making the right move. Methotrexate is basically poison, and I don’t want to be on a medicine like that if it’s not helping anything. I know he wants to dig a little deeper before he puts me on something else. He isn’t just going to blindly put me on some random medicine to see if it helps.

I was on methotrexate pills in the Fall of 2012. It didn’t help me then, either.

I found myself worrying about Tuesday’s visit at 4am yesterday. I guess I’m just tired of the “now what” feeling. I’ve had some heavy-duty lupus treatments, (methotrexate, Benlysta, Rituxan) and none of them worked. I’ve already been told that I have rheumatoid arthritis activity. I feel like I’m bracing myself for another diagnosis, and I’m hoping it’s something that has a treatment.

Whatever is going on is effecting everything. My hair is thin. My skin is irritated, and breaks out in burning rashes. My periods are short and heavy. It’s painful to use tampons. Some days it burns when I pee. I drink water constantly so that it doesn’t burn when I pee, and I pee 4-5 times in the night. My eyes are so dry and irritated I can’t wear contacts or makeup anymore. My heartburn gets so bad it makes my gums hurt. It gives me a bad taste in my mouth. When I lie down at night everything in my stomach wanders back up my esophagus. Sometimes the esophageal irritation is so bad I can’t wear a bra. My heart pounds for no reason. My blood pressure goes up for no reason. I get vertigo when I look down. My lymph nodes in my armpits swell and make my boobs sore. My nose is constantly congested. I can’t be in the sun without it making me feel sick. I’m tired, my muscles feel too weak, and my joints lock up when I try to do anything. My headaches are still the boss and my brain fog still embarrasses me in public. When I laugh I get asthma. When I cry I get migraines. I get headaches from chewing, bending over, sitting still, and eating bananas. My diet is so bland I started having dreams about food I haven’t been able to eat. Some of my pills give me heart burn, some of them make me constipated, and some of them make me nauseated. Some of them keep me awake, and some of them make me sleepy. I can’t stop taking any of them. I wake up in the middle of the night because I suddenly get itchy everywhere for no reason and it keeps me awake. I wake up in pain. I wake up with migraines. I wake up because I can’t breath through my nose. My toes are cold and numb most of the time. My hands are cold and numb sometimes, and hot and achy sometimes. I get low blood sugar. I spike a fever when I eat dinner, and I sweat when I’m cold. My knees hurt when I ride in the car too long, and my elbows hurt when I try to tie up my hair. I’m lonely but I’m afraid to be social.

Everything is an uphill battle.

Even though I am stopping the methotrexate, I still had this week’s injection because I did it before my doctor decided to discontinue it. So I’m still enjoying that nauseated, tired, headachey methotrexate hangover.

Colds and stuff #Lupus

I have a cold. A shitty chest cold. I actually don’t catch a lot of colds, probably because I limit my time spent in public. And when I am in public, I’m a Purell whore.

Anyway, I feel like crap. I’m sick, I did my methotrexate on Tuesday, and “Aunt Flow” came to visit, so it’s been a hard week. Plus the weather has been hot, dry, and windy, which makes me feel horrible by itself. My headaches have been ridiculous. I had one that woke me up at 4am the other day.

I spoke to my neurologist briefly last week and he is ordering an electronystagmogram (ENG) because I keep getting dizzy/lightheaded when I look down. It’s been pretty troublesome lately. I was at this cool records store looking through music a couple weeks ago and I was really lightheaded after looking down all that time. It’s been interfering with my ability to use the computer or work on any sort of art or reading. It’s really frustrating. My neurologist ordered the test to make sure there isn’t some kind of inner-ear problem from all my autoimmune activity.

On the bright side, my mom was able to transfer my methotrexate prescription from a Los Angeles pharmacy to one in my town, and they gave me a giant vial, so it won’t have to be refilled for a while. *excitement*

I’m still breaking out in those horrible rheumatic “sun burn” rashes over my joints and stuff. They itch and burn and come on with no rhyme or reason.

I’ll see my rheumatologist on the 17th, and we will probably decide what drug to use with the methotrexate then.

In the mean time I’ll try not to cough my way into a migraine.

Happy Valentine’s