Can you get Raynaud’s everywhere? #lupus

I have Raynaud’s Phenomenon. Blood vessels respond to temperature change by spasming and changing color. My feet are especially sensitive, and are ice cold most of the time due to inadequate blood flow. My hands get pretty cold too, which doesn’t help the pain and stiffness.

As time goes on, I am noticing more and more places on my body that are ice cold. The Raynaud’s that is in my feet has moved up to my ankles. I get ice cold spots on my shoulders and hips. Also, my knees get pretty cold from time to time. I know that normally a person wouldn’t have a lot of body heat coming from their joints, but to be cold as a corpse is a bit odd. Even though the Still’s Disease gives me fevers and hot swollen joints, I still have periods of time throughout the day where parts of my body are ice cold, and I also get the chills. It’s hard to tell if one causes the other or if they both just happen at the same time each day.

I also tend to get livedo reticularis when my parts are cold. If you’re not familiar, it’s a purple lacy rash. It is caused by blood vessel spasms under the skin, which sounds a lot like raynaud’s.

I’ve been told by one doctor that I have “vasculopathy”, which is really just a blanket term for blood vessel disorders. It doesn’t explain the how or the why, or what to do about it.

In the past I’ve tried nifedipine for the Raynaud’s, since it’s especially bad in my feet. But the problem is that it gives me headaches. Anything that changes the natural state of my blood vessels, whether it be dilation or constriction, seems to give me headaches, and that unfortunately includes food. I’ve had to give up cheese and bananas because they trigger migraines. Cardio exercise is also difficult to do without getting a headache.

I do take a calcium channel blocker to lower my blood pressure by a few points, because anything over 120/80 is terribly uncomfortable for me for some reason. The doctors always blow it off as “not that high” but to me it feels like I’m on crack. Doesn’t that mean something’s wrong?

I feel like I am dealing with Raynaud’s Phenomenon everywhere.

 

January-March stuff #lupus

I’ve had some testing done and some medication changes so I figured I’d write about it. I’ve been really struggling with brain fog lately, so enjoy my word soup.

Back in October or November, I started having an itchy patch on my right nipple. The skin became hard and I was quite worried about it. I already knew from a previous  ultrasound that I have dense breast tissue, which is painful and doesn’t have a treatment. But I was alarmed by the new symptom along with an enlarged sore lymph node on my left underarm. I requested another ultrasound where they looked at my breasts, and also my underarms. The ultrasound didn’t show anything unusual but I wasn’t satisfied with that test alone. I pushed for a mammogram, which they denied at first because I am under 40, which begins my rant:

With all the breast cancer awareness events and t-shirts and pink ribbons everywhere all the time, why do I have to beg for a mammogram? Because 26-year-olds don’t get breast cancer? They gave me such a hard time about it, and then when I finally went to get it, they told me “Don’t come back until you’re 40.”

My symptoms really scared me, they lined up with Paget’s Disease. I just had to know for sure that everything was normal. And it was, aside from finding out that I have painful dense breast tissue growing all the way up into my armpit area. Now I know why I hurt so much there all the time. And the lymph node is nothing, just an enlarged angry lymph node, probably from the lupus.

Dense breast tissue does raise your risk for breast cancer and I will be pushing for another mammogram when I feel like I need to, regardless of what a snooty desk clerk tells me in between smacking her gum and biting her fake fingernails. I urge anyone else who feels something isn’t right to do the same.

So, that’s it. Just sore boobs. Oh goodie.

I recently went to get a second opinion on my lupus treatments and was told I was being treated “conservatively” and the doctor decided it was worth a shot to raise my humira dose from twice a month to once a week. I’ve been doing weekly injections for a little over a month. I think I feel more tired. My pain levels are the same, they might even be worse. My elbows have been pretty bad, and recently my upper back and neck. I have the chills during the day, and I get really hot at night. I think I had that before but it seems a little worse and a little more predictable now. My lower GI pain is about the same. I seem a bit rashy lately. I did notice that being in the sun doesn’t seem to make me sick right away like it usually does, but also it’s not quite summer yet. It’s only been a short time since I increased the dose, so we’ll see what happens when more time goes by.

I went to see a new GI doctor that was recommended to me by my other new doctor. He said that my other GI was a “procedurist” and that this new doctor was good with motility issues. She diagnosed me with “functional dyspepsia” and explained that there are too many nerve signals being fired off between my brain and my stomach. She is treating me with amitriptyline. It’s an antidepressant but in small doses doesn’t alter mood and can help stop some of the excessive nerve signals. I started off at 10mg about a month ago and increased it to 20mg a few days ago. So far I feel a lot less of the gnawing gastritis pain at night which has been nice because I was losing so much sleep. I don’t really think much else has changed but I have to give the 20mg a chance to work. I’m really hoping eventually I will be able to eat some regular foods again. I’m still on the bland diet and it really sucks.

I am still having trouble swallowing, and clearing my throat all the time. I am still accidentally inhaling food, and feeling full too quickly.

I’m giving mindfulness a try. In my interpretation of it, it’s just teaching yourself how to give your mind a break so that you are not overloaded with stress. Some people practice traditional meditation but that can be difficult and uncomfortable for people with chronic pain and focus issues. So far I am figuring out when I need these mind breaks, and doing something tactile and completely focusing on that one activity. I was told to try something like petting my cat or rubbing lotion into my hands. It’s really hard to do it and to focus on it without thinking about actually “being mindful”. My brain likes to go 100 miles per hour sometimes. I think between those two activities, hand lotion one seems to be easier to focus on, since it feels more sensory (but without sensory-overload). Some people concentrate on their breathing to be mindful, but breathing exercises usually stress me out. And my hands get dry anyway, so the hand lotion is a good choice for the time being. I hope I can get a grasp on it and take my stress levels down a bit. Most of my stress is from pain which is something you can’t separate yourself from, but if I can teach myself not to focus on it for even a short time I think it could help.

I think I experience mindfulness when I listen to music sometimes, because I become completely engrossed in it. But music isn’t always appropriate when you feel like you are having sensory overload, and lately I’ve had more problems with feeling “sensed-out” so it hasn’t been a good solution on some days. I started to feel like music was giving me anxiety and I’ve never experienced that before, and it sucks because it has always been a good distraction throughout my pain journey.

I wonder if daydreaming counts as mindfulness since I do it a lot and completely forget where I am, ha.

I still have costochondritis. I can’t really wear a bra much anymore. I have to shower before bed because my rib cage is so stiff. I’ve been putting voltaren on the area for about a year now. I don’t really feel like it does much, to be honest. I feel constricted in my chest all the time. And when I sit in certain positions it gets worse. The hiatal hernia probably doesn’t help either. I sat on the couch for a bit recently and ended up feeling like someone was tearing a hole in my diaphragm for a few days after. I have to sit on more firm surfaces, but at the same time I have to have a cushion under my bony ass or else it goes numb. It’s always a contradiction with this disease. I miss being able to sit on my couch. The problems I have with my body are stupid and frustrating.

My brain fog seems to get worse every year. I am looking into treatments for that and trying to decide if I want to put myself through expensive grueling 6 hour testing or not, so they can tell me, “Yup, you have brain fog.” We’ll see.

I had a sore throat for like a month for no reason, that was fun. Thanks, Still’s Disease.

I suppose that’s about it

ttfn

 

 

Process of elimination #lupus

I’ve had problems with breathing at night for quite a while. It started a few years ago and would happen occasionally, and seemed to get worse when I took tramadol for some reason. It’s gotten worse since then. I’ve seen  a pulmonologist, cardiologist, neurologist and a GI. So far everyone just blows it off.

It’s been really bad. Two nights ago, I was up all night long. I went to bed at 7am. I felt like someone was squeezing my chest, and every time I was about to fall asleep, I woke up choking for air.

It sounds like sleep apnea but I really don’t think that’s it. I tested negative for it in 2014. I’m more concerned that it might be my heart or my gall  bladder.

For most of February I was probably getting 4-5 hours of sleep per night. I tried propping my bed up for a while, which was terribly uncomfortable. I stopped taking any medication that has drowsiness as a side effect since that seems to make it a lot worse. I was doing breathing exercises before bed and whenever I woke up in the night, which only provided temporary relief. If I fell asleep at all, it was by accident.

On the nights I did sleep, I was waking up hot and drenched in sweat, which can sometimes be a sign that your heart is doing fucked up shit.

More recently, I’ve weened off the metoprolol (beta blocker for heart palpitations) and also lowered my blood pressure medication (both at my own will) and I’m doing a little better. I had a stress test last October that showed that my heart was performing well while on the metoprolol, but I’m thinking that it’s causing a problem now.

I’m still taking the Norvasc for my blood pressure, but I’m down from 7.5mg to 2.5mg. My blood pressure is elevated and my heart rate is in the 100s, but I’m sleeping better. I have to sleep.

As you’ve read before, I’ve had some problems with sitting in certain positions. I’ve given up on sitting on the couch because it gives me chest pains and shortness of breath.

I am going to make an appointment with a new cardiologist because my current cardiologist likes to blow me off and tell me to exercise. I’ll exercise as soon as I can breathe.

I am hopeful to find a cardiologist who knows how to look for even the most minor inflammation. My current cardiologist had admitted that sometimes inflammation can be so mild that it’s easily missed.

Also, I’m having a terrible time with gastritis and acid reflux. I stopped taking the Duexis (ibuprofen) and I also think that it’s made a difference in my breathing at night. I occasionally just take over-the-counter ibuprofen. I haven’t had it in a few days though. I’m probably more achy than usual but it hasn’t been unbearable. But I haven’t really left the house in a few days. Also, my period is next week so I know I’m fucked for pain and headaches.

My breathing gets worse when I have my period too. I was thinking about taking the progesterone shots to stop it.

I’m going back to my GI and asking him to check my gall bladder. I’m on 240mg of Dexilant per day, which is a dose the pharmacy didn’t even want to give me, and I still feel like I am drowning in stomach acid.

He has been reluctant to provide me with any real treatments so far. The only reason I have the Dexilant is because my rheumatologist gave it to me. I am hoping that at my next visit with my GI, he will be more proactive. If not, I’ll have to find someone else.

The gastritis is keeping me up at night. I have to get up at 4-5am and eat, and take medication for it so I can (hopefully) go back to sleep. Otherwise I feel like lava is eating the inside of my stomach.

So, maybe it’s my heart, or my stomach, or both. We’ll see.

I am also going to see another neurologist for the breathing issues and a bunch of other shit. I’m having a lot of muscle weakness in my hands and I’m dealing with a lot of brain fog.

For the past few weeks I’ve had some kind of tendonitis in my hip. My knee was bothering me too, but that seems to be better. I can’t really think of anything I did. I tend to bear my weight on my left leg when I’m standing for a while, but I don’t see how that could cause my hip to hurt for 2 weeks. Then again, I suppose it could, since Lupus is a dick.

I’m having a bad time with my body temperature. Sometimes I’m too hot, and sometimes I feel like someone drained all the heat out of me. I’ve been getting cold hands and feet like usual, but I’ve also been getting ice cold spots on other parts of my body, like my knees and hips. I don’t really know what that’s about. It makes me worry about my circulation. I don’t know if you can get Raynaud’s in other parts of your body. Or perhaps it’s the “vasculopathy”. More mysterious bullshit to deal with.

I also have a shivering problem, and sometimes I’m cold, and sometimes I’m not. It’s really hard on my muscles because it makes me really tense. It’s uncomfortable. I don’t know what that is, either.

I have an appointment with my rheumatologist this week. I’m basically just going to reiterate this blog.

 

 

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.

 

 

 

eyes and lungs #lupus #stillsdisease

I had 2 doctor appointments yesterday. It was a long day. I’m pretty tired today. I first went to the opthamologist for a follow up about the allergy eye drops and the contact lens samples she gave me. The toric lenses are pretty uncomfortable. I haven’t had a pair of torics that weren’t uncomfortable. To me, they’re like sticking window clings to your eyeballs. The edges are too hard and can feel the lenses all day. I tell eye doctors this but they always seem to insist on trying torics anyway, probably because they are more expensive. I gave them a try anyway and told her they were uncomfortable, and now I’m just going to go back to my usual lenses. My astigmatism isn’t bad enough for them to be necessary anyway.

My appointment with her was very irritating. I probably won’t be going back.

I had some time to kill between appointments. It was hard to stay awake for some reason, which is odd for me. I get tired but I never really get sleepy. I was wondering if the Humira had something to do with it. Also, the eye doctor was poking around in my eyes and putting all sorts of drops in without asking me first, and it made me have anxiety. I could have also been sleepy from that, since my adrenals make me sensitive to stress.

After that I went to the pulmonologist. He seems like a nice doctor. I did a few breathing tests that measure for asthma and lung capacity, and he also listened to my breathing. Those tests didn’t show anything, but since I have shortness of breath and a lot of tightness in my lungs, he is going to do a few more specific tests. He talked about lung inflammation from lupus, and that it doesn’t always show up on certain tests. He seemed certain that we could find out what the problem is without running a million tests. I also already had a chest x-ray and they took some blood.

Tomorrow I will be doing the breathing tests for the pulmonologist, and I will also be doing a stress echo for my cardiologist, so it will be a long day again.

humira #lupus #stilldisease

I had a good doctor appointment on Thursday. I’ve been on Enbrel for the past four weeks, and seeing some subtle changes. My doctor walked in the room and immediately noticed that my skin is no longer covered in a mottled red rash. He seemed really surprised about it. I think “giddy” would be a better word for it.  I hadn’t noticed its disappearance myself. I guess I hadn’t been paying much attention to it, but now that he pointed it out, I can say that he is definitely right. I don’t know how long I’ve had autoimmune activity, but I can tell you that I’ve had that mottled rash since I was a kid. I never thought much of it. I do remember noticing it would get worse when I was cold or anxious. I remember my first day of second grade, being the new kid, and my legs were covered in it.

I’ve honestly never had a doctor be that excited for me before. In the past year I’ve become extremely skeptical of finding a treatment that would bring me some relief, but I’m starting to think differently.

I have a lot of gastrointestinal symptoms, including gastritis and esophagitis, which at times can be pretty painful. This week my doctor switched me from Enbrel to Humira. Both are TNF blockers, but Humira is a biologic that can sometimes help with GI inflammation. Also Humira is a nice switch because I only have to do the shots twice a month as opposed to the once-a-week Enbrel shots.

I did my first Humira shot 2 days ago and I am noticing a change in my GI tract. I didn’t realize it would work that quickly. I don’t think it’s a coincidence, because I’ve been feeling horrible for months and all of a sudden I just don’t feel so completely awful anymore. I’m still having some pain and heartburn, but something seems different.

I ate a snack today and didn’t regret it immediately after. That’s a big deal.

Maybe at some point I can eat real food again. My diet has gotten so bland it’s actually grossing me out. I miss pizza. And chili fries. And flavor.

My doctor has mentioned the possibility of vasculitis being present in other parts of my body. It’s hard to really know for sure. For the past 3 years or so I’ve had to cut out almost all salt from my diet, because I would have a bad reaction to it right after eating. My blood pressure suddenly became high. Both are strange occurrences for me because I have a disease (Addison’s disease) that usually requires a higher salt diet and usually tends to present itself with low blood pressure. It might be too soon to tell but it seems like lately I’ve been able to eat salty food without feeling that terrible after. It would be nice to be able to eat a small amount of salt again, considering how hard it is to leave out salt. Plus salt is flavor, and I like flavor.

All of that is of course a theory, but it makes sense to me.

I’m still having some fevers, but overall I don’t feel as hot as I normally do. It’s hard to gauge sometimes because the weather is still so hot here. But I’m having a few hours a day where I’m not uncomfortable. It’s been pretty nice.

I am having some trouble with my lungs. I suppose I have been for a while. My cardiologist’s assistant said she heard some tightness in my lungs. It definitely feels tight. I get short of breath easily. It has been affecting my sleep for a while. I’m going to see a pulmonologist. I had asthma as a kid and I do think that to some degree I still do. But I also think there is some other kind of inflammation going on as well. It’s gotten gradually worse like all my other problems. I’m doing a repeat stress test on my heart just to make sure, too.

My next Humira shot is on the 29th. I’ve got a few more doctor appointments coming up too.

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.

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

May and June stuff #lupus

I had my second Actemra on May 12th and I’m due for my next one on June 16th. It went well. I didn’t seem to get a headache like I did the first time. It has made me pretty tired though. I’m looking forward to the next one, and as always playing the waiting game. I don’t want to wish the year away but I’m antsy about getting these infusions. I want to get them done and know whether they will work or not.

My rheumatologist put me on Dexilant, which is a proton-pump inhibitor similar to prilosec/prevacid/nexium. He seemed irritated that my GI wanted to try to control my acid reflux with diet. I’m taking 60mg 4 times a day, which is a pretty big dose. The pharmacist wasn’t comfortable filling the prescription for that much and had to “file a report” and double check with the doctor. I trust my doctor over the pharmacist. So far I don’t really feel like I’m getting any relief. I’m still having reflux that makes me have asthma, still clearing my throat all day, still avoiding acidic things. It’s obnoxious and I’m tired of eating bland.

I’m going to see an opthamologist tomorrow about my dry eyes. I use restasis but I haven’t been able to wear my contacts in a long time. I feel like I have sand in my eyes. I like my glasses but I hate wearing them all the time. I just hurt so much sometimes that I can’t stand to have the weight of them on my face.

I’ve had this weird shivering problem since I got my period in April. That cycle sent me into a weird flare. At first I was cold along with it, but now I shiver when I’m not cold. I thought it could also be from stopping the Pamelor, but it’s been going on for too long now. It seems like it comes on around the same times every day.

I’ve had this odd problem for the past couple years where when I take certain pain relievers, they make me short of breath at night and I wake up over and over because I stop breathing. I was tested for sleep apnea about a year and a half ago and they didn’t find any signs of it.

Sometimes I have this breathing problem even when I don’t take those pain relievers. I’ve stopped taking them altogether, but still have “flares” of this problem. I’ve been having a problem with it all week and I don’t know why. It’s been awful. I haven’t slept much.

I went to a concert for my birthday a few weeks ago, and the light show was pretty intense. It occurred to me that I had the shivers pretty bad during the concert, and after, and just generally felt like crap. I didn’t think much of it since I always feel like crap, and since I had already been dealing with the shivers.

It also occurred to me that I played video games for a couple hours on Wednesday, and that night when I went to bed I couldn’t shut my brain off. I hadn’t been playing right before bed, but I saw flashes and colors when I closed my eyes.

On Thursday night, I put it all together. I went to bed, had all my usual meds and I was listening to music. I was a little wired. Sometimes that happens to me at bedtime. I was just trying to relax. But I suddenly had this horrible feeling come over me, like I just mainlined espresso or something (which I later realized was an “aura”). I felt pretty nauseated, and the shivers started. I tried to lie down with the lights off but I was having the breathing issue that kept jerking me awake. It all felt scary so I stayed up for a while, ate some food, drank one of those vitamin drinks. I never really did sleep much after that. I was twitchy all night. I remember the whole thing. I don’t really feel like I was “altered” in any way, other than feeling a little freaked out.

Oddly enough, my cat had been waking me up in the night all week. She absolutely would not leave me alone. It’s been driving me nuts. Apparently she knows something I don’t.

I had some epileptic activity when I was a kid. I thought I had grown out of it. I didn’t have the “fall to the ground and lose consciousness” seizures that everyone thinks of when they hear “epilepsy”. I had these spells of nausea, shakiness, and feeling awful, followed by sleep. They seemed to come on right after I would start eating a meal. I wouldn’t pass out. I didn’t take medication for it.

I’m worried that I might be having seizures again. I haven’t had an EEG in a while. They don’t always pick up seizure activity, but I’d like to have another one. I haven’t been able to explain why certain pain meds affect my breathing at night, but now I know some of them can affect seizure activity, as can stress and lack of sleep.

I’ve had a couple episodes during the day since Thursday night. I felt really crappy suddenly while I was in the shower on Friday. I had that aura feeling again Friday evening, followed by nausea and the shivers. I’ve been monitoring my blood pressure and temperature when it happens, both have been normal.

I have an appointment with my neurologist that I was originally going to cancel because I felt like he couldn’t help my headaches anymore. I’m going to keep it so I can talk to him about seizures.

I’ve probably had these symptoms for a while, but I’m so used to feeling like crap, sometimes it takes me a while to put things together, or to even realize that something is a symptom. I tend to blame symptoms on other things, not realizing they could be something new. It’s hard to wonder why you feel like crap when you’re so used to it. I’m now realizing all the things that bother me that point to seizures, and I feel dumb for not realizing this stuff sooner.