A little of April and May #lupus

I know I am overdue for a blog. I don’t really remember where I left off last time. I’ve been to a new cardiologist and I had an ultrasound to see if there was any inflammation around my heart causing me chest pain and shortness of breath. I have yet to know the results of that test because the doctor cancelled my appointment since she will not be in town.

The cardiologist did mention that I could also have a problem with my diaphragm. I’m starting to believe that that is my whole problem. I notice now when my heart burn and gastritis are bad, so are my chest pains and shortness of breath. My breathing trouble at night gets worse when my stomach gets worse. Nothing seems to stay down in my stomach anymore and I’m clearing my throat all day long from the acid reflux.

I started taking Carafate about 5 weeks ago in hopes of healing the gastritis, and so far I don’t feel any better. I still have to eat right before bed and eat in the middle of the night or early morning to get the grinding pain to stop. My stomach grinds even when I just drink water. I’m not sleeping very well. I’m sleeping propped up which has been really hard on my back since I am a side-sleeper. I feel like I can’t breathe when I sit. I feel really full when I drink water. I’m miserable with this problem, to be honest.

My GI wanted me to see a nutritionist to get ideas for meals, but I honestly don’t know what they would tell me to do that I’m not already doing. I can’t possibly eliminate anything else, and everything I have eliminated has been for good reason so there isn’t any way I could put it back into my diet. I have made an effort to still try to be as nutritionally sound as possible.

I’m going back to the GI soon to talk about the carafate and my diaphragm.

I went to see a neuropsychologist to get some help with my brain fog. It’s really bad, so bad that I don’t know how I will ever be a functioning adult if I don’t get it sorted out. I had an MRI on the 10th just to check up on my brain and make sure I don’t have lesions and stuff. The doctor wants me to do some testing for my brain fog but they didn’t have an appointment for me until the end of summer so I’ll just be waiting til then.

I’m still taking the Humira shots twice a month. They are still helping some of my lower GI tract inflammation and also some of my muscle pain seems to be better. I would be hard pressed to say it isn’t helping some things. I am still disappointed that I feel so awful all the time, but I am hoping if I can get my GERD/hernia and my brain fog sorted out, I might not feel so terrible. Those 2 problems are really bothersome and could possibly be overshadowing any other relief I might be getting from the Humira.

I’m having a bad time with vertigo. I’m dizzy just from looking down slightly at my computer screen. I noticed my vision seems a bit weaker lately, not sure if it’s just time for an adjustment in prescription or if it means anything. I do have an astigmatism for which I do not wear corrective contact lenses. I’ve always been fine without torics. But lately it bothers me when I wear my glasses too and those do correct my astigmatism. I tried my toric samples the other day and my vision didn’t seem to improve. It’s not a big deal, just an annoyance. Maybe my vision is blurry because I don’t sleep much. Who knows.

Some of you noticed that I haven’t written a blog in a while. I truly appreciate everyone that follows along with me. I have someone in my life that is harassing me, especially on the internet, and I have continued to write knowing that they read it and that they may decide to bother me more, and that isn’t going to stop me from doing what I feel is important for people who like to read my blog and for myself. I considered dropping out of sight and closing down my blog and making an attempt to write somewhere else anonymously, but I don’t want to give anyone that kind of power over me, and I don’t want to abandon people who have been so supportive in the last 4 years. I’ve recently had a change of attitude over the whole situation and now find it laughable and quite pathetic.

Cheers to that.

February #lupus #ra #humira #spoonie

February was a long month. It seemed like my family and I were sick for weeks. My brother came down with the flu on Superbowl Sunday. Everyone’s been sick since then. We had a sudden heat wave and I think it just made everybody sicker. I had a sore throat for weeks, and then finally last week I got a cold. Once I actually got sick, it wasn’t that bad. But it took so long just to come down with it. I felt awful for a long time. I’m doing better now but my sinuses are still stuffy.

I had to take my Humira a few days late a couple times this month just to make sure I was well enough to take it. It ended up working out, but it’s kind of stressful when you’re not sure if you’re sick or not. I did my shot yesterday. I’m tired today but not sure if it’s from the shot or just from everything.

I’m not sleeping well. I’m pretty exhausted. Sometimes in the middle of the day I’m so tired I just want to cry. I would take a nap, but I haven’t been able to sleep at any time of day. I’ve talked before about my breathing problems at night. This month it’s been really bad. I feel like there is something wrong with my diaphragm. When I lie down I feel some resistance in that area, like it collapses or closes up or something. Right when I’m about to fall asleep I jerk awake gasping, and I can hear it. It’s not wheezing. It seems different. Sometimes I have a night where it doesn’t really bother me. Those seem to be the days where I didn’t take any medications that cause drowsiness or relax muscles. So now I’m afraid to take anything like that anymore, because I want so badly to just sleep. Last night was a little better than usual but I was still up pretty early because of my usual gastritis pain that hits me around 5am. If I fall asleep around midnight and wake up at 5, that’s actually a good night for me. Sometimes I go to bed and I’m not really able to fall asleep til 2-3 because of the breathing problems, and the quality of sleep I do get is pretty shitty, and I wake up all jumpy and jittery.

My joints hurt a lot this week. Particularly my lower spine, hips, knees, and the bones in my feet. I’m not really sure why. Sometimes when I get menstrual cramps, it’s like the pain goes all the way down to my feet.

I’ve had a lot of nose bleeds. I had a week this month where I was having 2 a day. I wasn’t gushing all over the floor but I still needed to keep tissues around. I chalked it up to to the Flonase that I had been using for some nasal swelling. I prefer nasacort since it doesn’t smell like flowers and it doesn’t give me nosebleeds.

The last 2 doctor appointments I’ve been to were complete shit. They didn’t listen to me at all. Sometimes a doctor’s only goal is to bill your insurance. I went to the gynecologist for a “Well Woman” visit which is free for everyone because of Obamacare. I had a few things concerning chronic pain in that area that I tried to talk to her about, things I thought she might be concerned about too, but she seemed more interested in hurrying me along, since it was my free visit. The pain I have is abnormal and uncomfortable daily and I was hoping to get some help or at least an explanation.She basically just told me not to wear jeans. And I’m just thinking “Um, it’s not normal for jeans to make your ladyparts hurt to begin with.” I thought she might check my hormone levels since an imbalance could cause pain sometimes. Nope. I also talked about progesterone to stop my periods since they make my lupus worse every month, and she really wasn’t interested in providing me with extra information. I asked her if she had some of those medication brochures and she told me to google it.

The more I thought about that appointment, the more pissed it made me. I felt a bit violated and unheard at the same time.

Doctors hate Obamacare and are prejudiced against any service they have to provide under it. She just wanted to do the minimum and get me out of her office.

I would happily talk about the other appointment I went to openly but [insert dysfunctional relative here] reads my blog and I’d sooner share things with strangers at the bus stop. I don’t usually talk about the harassment out of fear of retaliation.

It was just another situation where I was disappointed by a doctor with whom I shared things in confidence, and now I have to see another doctor and start all over again.

Today I was supposed to go see a neurologist. I made the appointment on speakerphone with my mom 2 months ago for today, March 1st. I put it right into the calendar on my iPod. I can only make appointments on Tuesday or Thursday, and I go mostly on Tuesdays. The staff must have forgotten that Monday was leap day, because for some reason I was scheduled on Monday. I know for sure it was supposed to be March 1st. I remember specifically asking for it since it was a Tuesday. So now they won’t see me at all since I was a “no show”, even though it was their mistake. They’d never admit to it in a billion years and in the mean time gave me attitude like I was too lazy to show up yesterday. They told me they tried to call me once to confirm the appointment on Friday but that there was “something wrong with my phone”. My mom called to confirm the appointment this morning since I never got a call, and it’s a good thing she did, or else we would have driven 3 hours round trip for nothing.

While I don’t really want to be at a doctor’s office where the staff doesn’t know how to read a calendar, I was disappointed that I didn’t get to see a doctor today. I really want to talk to someone and hopefully figure out my breathing problems. I’m scheduled to see a new neuro but their first available appointment is at the end of April. I am hoping that if they get a cancellation, they can get me in sooner.

At the same time I am a bit disenchanted with going to doctors in general. I feel like I’m not being heard or helped. I’m not expecting a magic wand but maybe a bit more understanding would be nice. Whenever I have a new troubling symptom I feel like it takes years to figure out what it is, because I have to go around and see all the specialists all over again, only to have most of them shrug and go “it’s probably the lupus”. Well, no shit sherlock, but I’m miserable, so fix it.

For example, I’ve had heart palpitations and high blood pressure for years. I still don’t really know why. It’s probably vascular. But for me to finally know that it’s “probably vascular” took me years of “it sounds like anxiety” and various tests coming up normal. I had to beg my cardiologist to give me medication for it. My resting BP was 140/100 and it was giving me terrible headaches, shortness of breath and dizziness. They were perfectly OK with letting me go on like that because it’s “not that high” and “it would take ten years to do damage”. It’s still a problem but I’m a bit more comfortable now. I have a handful of symptoms like this that make daily living really hard and they all just kind of shrug at me, and my nighttime breathing problems is one of them.

Also my bladder problems… I don’t remember if I already wrote about this or not, but I was able to figure out that some of my bladder irritation is probably an allergic reaction to salmon. I was eating it a lot since my diet is pretty limited, but I realized when I hadn’t eaten it in a while, I wasn’t having the burning or frequency nearly as much anymore. I still pee a lot but I’m in a lot less pain now. But I’ve been dealing with the bladder irritation since I did the Rituxan treatment in 2014 (which can happen with some drugs) and it’s been terribly uncomfortable.

Sometimes I get treated like I’m doing something to cause my own symptoms.

Or the “you’re too young to be dealing with that”.

Oh, ok then, I guess I’m not.

I’m still not really able to sit on the couch without getting the vertigo and chest discomfort. I’m really not sure what that’s all about. I’m sitting in dining and office chairs most of the time now. Some days are better than others. It’s been hard on my body but the pain has been easier to deal with than the vertigo. By nighttime I’m pretty achy. It’s hard to have the endurance to sit at a table when you’re sleep deprived, too. I feel like I’m pushing myself every day now. Days feel really long sometimes.

Veering off into a completely different direction, I am pretty disappointed with the changes in social media lately. As sad as it sounds, they are the bulk of my social life, and the new algorithms that control who and how I interact with people have made things like facebook basically useless. The facebook algorithm is designed so that the less you interact with someone, the less you see of their posts. But then what ends up happening is you never see a person’s posts so you never interact with them. It’s a shitty catch-22 algorithm. So I know my friends aren’t ignoring me, they just aren’t seeing my shit, and vice-versa. Twitter is starting to do the same thing, and they both throw in a lot of advertising, which is annoying. I also am annoyed from seeing 2-day-old posts at the top of my news feed, and seeing a post again just because someone commented on it. I’m starting to fail to see the point in using facebook. I know there are other social media apps and stuff but I don’t have a smartphone and I am limited to what my computer or my iPod 4 can do. I like sharing my art and my stupid thoughts and my blogs with people. It makes me feel normal.

Speaking of art… I had a week where I did quite a few digital drawings, still life stuff. I got sick and I got off track a little bit but I’ll get back to it. I was learning about my camera the other day. I haven’t played around with the settings much and I was having fun with that. Today I downloaded Blender to see if I still have any 3D modeling skills intact. It all still makes sense, I just have to practice it a little bit. I totally bombed this tutorial on Youtube, but probably because I was trying to do it with a headache. There are quite a few computer programs I want to try. I was looking at Maya, and I am already familiar with 3D Studio Max. I also want to try Sketchbook Pro and probably Photoshop for drawing. I also would love to get my hands on some music software like FL Studio. I can use my piano keyboard as a midi controller and I know I’d have a ball with that.

Last night the fog rolled in really thick and it smelled like the beach. It was pretty much my favorite.

Tomorrow and energy and stuff #lupus

My rheumatologist told me last week that we are doing everything we can safely do to control inflammation and the pain caused by it. The next step is to try to control the pain not caused by inflammation, and also my brain fog issues. I’m seeing a new specialist for those things tomorrow. I’m not a fan of going to see a new doctor. It always makes me nervous.

I’m still struggling with energy. It doesn’t help that I can’t seem to get a decent night’s sleep. I woke up every hour last night, mostly because I pee too much. I feel like a sloth today. I’m having some shortness of breath that isn’t helping either. I’m having some headaches that come with vertigo and feeling lightheaded. They make my neck hurt too. I’ve had them before. They’re not too bad this time but they make it really hard to concentrate. They make the brain fog a lot worse. They get worse when I look down for too long. Sometimes they make my muscles feel weak, and they make my teeth hurt. They’re weird headaches and they feel awful. I’m pretty sure they are vestibular migraines. When I can rid myself of the headache/neck ache, all the other weird symptoms go away too.

I’m taking more vitamins. I went up on my iron and started taking D3 softgels instead of tablets. They seem more effective for some reason. I get more achy at night when I don’t have enough D3.

I’m backing off on the ibuprofen. Mostly just to see what happens.

My BP seemed a bit on the low side today. I’m gonna try going back to my usual dose of Florinef. Maybe it will help my energy. It might give me more headaches. I don’t know. It’s a medical Rubix Cube.

I had a minor stomach flu on Monday. It wasn’t really that bad but I still don’t feel 100% yet. Today I would normally do my Humira shot but I’m gonna wait an extra day to make sure I’m over it. I’m kinda too tired to deal with stabbing myself today anyway. It’s an easy process but the injector pen is painful.

I’ve been using restasis eye drops for a few years. My eyes used to feel so sticky and dry. I’m taking a break from them now. I feel like every time I use them they make my eye feel irritated all day, which seems counter-productive. I’m using Pazeo allergy eye drops now and they seem to be taking care of the irritation and my eyes don’t seem to feel dry even though I stopped the restasis. I’m still not wearing contact lenses that much but I am able to actually wear them when I want to. Mostly I’m just too lazy to put them in.

 

Eyeballs. Enbrel. #lupus #stillsdisease

I’ve stopped the Actemra infusions and switched to once-a-week Enbrel injections. So far I’ve done 2 injections with the auto-injector. When the pharmacy fills my prescription I think they will be giving the prefilled syringes instead. The auto-injector hurts. It’s easy to use, it just jabs really hard.

A few days after my first injection I noticed my back muscles felt a bit better. It wasn’t miraculous relief but I was suddenly able to sit more comfortably after months of pain and weakness. I still feel hot during the day but I’m noticing I get the chills now, which I wasn’t before. I feel a little less uncomfortable in the fever department some days. Also, I had a few days where I didn’t have bladder pain. It was short lived, but it happened.

I’m going to continue with the Enbrel for 12 weeks and see what happens. My doctor is excited because Enbrel is much cheaper than the other medications that we were looking at, like the Kineret.

I went to the opthamologist last week. I haven’t been able to wear my contacts for the past few months, and they haven’t been very comfortable for years. I already use restasis but have been feeling like my eyes are still dry and gritty. I’ve been worried about having autoimmune inflammation in my eyes. I figured they would tell me I just can’t wear contacts anymore.

It turns out, for a change, that my problem is a lot simpler than that. I have allergies. I started using pazeo drops and for 2 days I’ve been able to wear toric lenses. I couldn’t wear torics at all before. Now I can see sharper when I wear contacts. Before, I was just using regular contacts. They were good enough, but not sharp. I haven’t tried wearing makeup with contacts again yet. I’m still giving the drops some time to work. When I put my contacts in yesterday, they still felt gritty for the first hour, but felt better after that. I’m hoping to get continued relief so I can wear my contacts more often. It’s nice to not have a pair of glasses on your face all the time, especially on headache days.

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.

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.

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.

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.