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.

Vertigo and stuff #lupus

I’ve been getting vertigo and shortness of breath from sitting on my couch.

I agree, it sounds ridiculous.

It must be a positional/blood flow thing. Like when you get a random boner, only vertigo.

Luckily I’ve never had a random boner.

I’ve been sitting in a chair at the table for most of the day to avoid it. But I reach a point where I can’t sit there, either. My neck and my back couldn’t take it anymore so I went to lie down on my side on the couch for a bit, and sure enough, the room is now spinning. I also feel like someone is sitting on my chest. I’m having more shortness of breath when I am trying to fall asleep too.

I wish my ass was less bony.

This has been going on for a week or more. It’s just this month’s weird problem. I get a new one every month. It’s like a ‘Weird Problem of the Month’ club. This subscription sucks.

I saw a specialist for pain and brain fog a few weeks ago. I’ll be nice and just say he wasn’t a good match. I have appointments with a couple more, my mom and I figured we might as well shop around a bit for this type of specialist considering it’s a tricky subject and the specialist needs to know what they’re doing.

I have an appointment with a gyno soon, because unfortunately the chronic pain and skin inflammation that goes with autoimmune disease can affect anywhere. Also, having Addison’s Disease, my hormone levels could be unbalanced. My periods every month make my lupus worse. I hate knowing that week is coming. I hate having that setback all the time. I hate the extra migraines and the ‘Weird Problem of the Month’. I hate the extra stomach pain, and the extra pain in general. I hate the extra fatigue, and the lack of sleep, and the cramps. I wish there was a different word for cramps, because the word ‘cramp’ doesn’t do the ‘barbed-wire-wrapped-around-my-uterus’ feeling justice.

Oops. TMI.

Right now I’m shivering for no reason. I’m not cold, because it’s hot in my house right now. Just another weird symptom I’ve been having lately. It makes my muscles hurt. We broke a record in heat today. “Winter” LOL.

I did some art today. I’ve had a bit more energy in the morning for the past couple days. When I am able to sleep until 7 it seems like I do better with energy. But when I sleep until 4, and then I’m up for 3 hours and then have to go back to bed, I usually feel shitty.

Thursday is Humira day.

Well, I managed to mention butts, lady parts, and boners in today’s blog. I should probably get off the computer now.

 

 

 

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.

Actemra #3 and neurology #lupus #stillsdisease

I had my 3rd Actemra on Tuesday. I talked with the doctor about my plans to see my neurologist this week, and to make sure it was alright to have my infusion since I’ve been having new symptoms. I also told him that I felt I had a few weeks where I wasn’t waking up in the night with a fever, but it had started happening again. I also had a few weeks with more mild rashes compared to the feverish red rashes I usually get, but that those are back too. He told me that some people feel like Actemra lasts for 3 weeks, and he decided to give me some solu medrol for a boost.

Solu Medrol has made me feel like crap in the past, but it was with other infusion drugs, so I figured I’d give it a go to see if it helps with the fevers and stuff. So far, I feel like crap. I asked some people in the support group if Solu Medrol ever made them feel worse instead of better, but apparently I’m the only one. When I got home, I had the leg cramps, and they went on all night. My eczema has gotten pretty red and angry, and I had headaches and heart palpitations for a few days. I’m still having fevers and rashes. I’ve slept a little better the past two days, but the fevers are still waking me up.

I’ve been having pretty bad vertigo for the past week. I had an ENG in March, which didn’t show anything. I don’t think my vertigo is an ear problem. I was doing some reading online (y’know, consulting Dr. Google) and I was reading about cervical vertigo (cervical as in spine, not lady parts) and how some people with arthritis in their neck can get vertigo. It makes sense to me, because when my neck pain gets bad, that’s when I get the vertigo, and I usually have a headache with it too. I had a spell of vertigo just like this a couple summers ago. It’s awful. I can’t do anything to occupy myself. I can sort of watch TV but using the computer, drawing, and reading all make me horribly dizzy because I have to look down to do them. Wearing a neck brace makes it better, which reinforces my theory on a cervical cause. Wearing a neck brace is terribly uncomfortable, though. Also, I don’t have vertigo when I get up in the morning, probably because I’ve been resting my neck all night. I don’t really know what makes it flare, but last time it was this bad, it was also summer. Probably a coincidence. I don’t know.

I went to see my neurologist yesterday about all my weird neurological symptoms. He thinks my episodes are “too long to be seizures”, but he wants to order up a seizure sleep study to see if there is some epileptic activity in my brain. Unfortunately, and this happens a lot, he referred me to a doctor that doesn’t take my insurance. So now we have to try to figure something else out. He also talked about the blood vessels in my brain, and how the vasculitis (and aftermath “vasculopathy”) can cause changes in blood flow to certain parts of my brain, which could cause symptoms as well. As far as some of my meds making it worse, his advice was “don’t take those” which was really kind of a “no shit Sherlock”.

Kinda frustrated with all of it. I don’t want to stay overnight for some test that may or may not figure out the problem, and I don’t want another pill with a billion side effects if they happen to find something. I’m losing a lot of sleep from my symptoms, and I have medications that were helpful for other things that I can’t take anymore, so I have to deal with those symptoms too.

I keep thinking back to when one of my (ex) doctors told me she would have me back on my feet and going back to school in 6 months. That was 3 years ago, 5 treatment plans ago, 2 diagnoses ago, and a partridge in a pear tree.

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.

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.