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.

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

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.

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.

Bladder Problems #lupus #stillsdisease

I shouldn’t be awake right now, but between midnight and now (3:50am) I slept too deeply. There is such a thing, unfortunately. I didn’t drink enough water for those hours I was asleep. Enough water for me, anyway. I have a problem with my bladder that has largely been ignored by my doctors, save for multiple useless urine tests. I get pressure and burning in my bladder and urethra if I don’t drink enough water. “Enough water” for me is about 7-8 bottles, which is almost twice the recommended daily amount, and the end goal being to dilute my urine enough so that it doesn’t irritate my bladder. I don’t recommend drinking that much water as a solution to a burning bladder. I am also chronically thirsty and I can’t seem to help it.

I have had every wee wee test ever to see if the burning is perhaps bacterial. I have no infection whatsoever, and never have. I’m assuming then that the burning is due some chronic inflammation caused by the Lupus or the Still’s Disease, and exacerbated by acidic urine. People don’t realize that with auto-immune and auto-inflammatory diseases, there are symptoms that are unexplainable that are caused by random inflammation that are not listed under typical symptoms of the disease. Everyone’s disease activity is different and inflammation can happen anywhere for no apparent reason. Bladder irritation isn’t the only type of mysterious inflammation I get. I also get it in my eyes, nose, mouth, esophagus, and stomach on a daily basis.

If I drink enough water, I can curb the burning most of the time. It sometimes still bothers me regardless. It’s not hard for me to drink a ton of water, as I seem to have unquenchable thirst, which is a whole other issue. The problem with drinking that much water is that I spend a decent amount of my day in the bathroom. When I recently gave a 24-hour urine sample, the final measurement was 4700mL, and normal 24-hour output is between 800-2000mL. My nephrologist actually asked me if I peed in the containers for more than 24-hours. I was pretty irritated with her. I’m sick, not stupid. Why would I continue to do something that is an absolute pain in the ass for longer than I have to? They do make over-the-counter pain relief for the burning problem, and I’ve got both Azo and Cystex on hand for when the burning gets out of control. The only problem with them is they are very irritating to the stomach which brings on another array of issues when I have to take it. I took some right now after eating some cereal, and now I am having acid reflux and pain from the gastritis, which means I can’t go back to sleep until the acid stops. I ate some food and took some antacid in hopes of protecting my stomach and it was a crap shoot as usual.

I could go see a urologist, and have them scope my bladder (which is extremely painful) and subsequently shrug their shoulders at me, but I really don’t see a point in going through all that. There isn’t a lot they can to for cystitis, especially when it’s not caused by an infection. They would probably diagnose me with interstitial cystitis, which can be a disease by itself and doesn’t have much of a treatment plan. I really do think that my cystitis is secondary to my other diseases and not a disease by itself. It is my hope that eventually the Actemra infusions will eliminate these random inflammations throughout my body and I can stop storing water in my hump like a goddamn camel.

Endoscopy results #lupus

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

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

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

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

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

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

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

Some stuff #lupus

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

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

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

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

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

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

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

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

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

Ta ta for now.

Endoscopy #lupus

I had the endoscopy today. I don’t feel groggy, just tired. I have a headache. I’m having some heart palpitations, which is probably from the IV hydrocortisone. Steroids can make you wired, I might be wired from it all night. Normally functioning adrenals produce their own levels of cortisol to manage stress, but since I have Addison’s Disease, I produce no cortisol, so we have to do it manually via hydrocortisone. Lack of cortisol is fatal. Cheers hydrocortisone.

I wear a MedAlert bracelet for my Addison’s Disease. My current one looks like a green livestrong band. I like to have it on in case there is ever an emergency where I can’t communicate. It has “Addison’s Disease” on one side and “Steroid Dependent” on the other. In retrospect, I wish it said “Hydrocortisone dependent” specifically.

medalert

I arrived at the hospital, checked in at a few different places, and was in the waiting room for an extremely long half-hour. When I was called back, I changed into a hospital gown (a fabric one, yay!) and bagged up my clothes and shoes. They showed me to a bed in a busy pre-procedure room, and a nurse sat with me to take a history of my diseases and medications. They gave me a quick EKG to check my heart. They put a pulse monitor on my finger, which was later required on my ear, since my hands are cold. They put in the IV, and a blood pressure cuff on the other arm. It took them an extra few minutes to make sure they had the IV hydrocortisone order for the anesthesiologist. I talked to a few nurses, the anesthesiologist and his intern, and finally the doctor came in. By then I was pretty relieved to see him. He has a bubbly personality which can be helpful when I’m anxious. The anesthesiologist was going to have me gargle a numbing solution to numb my throat for the camera. The doctor said I probably wouldn’t need it. There was a lady next to me who had experience with endoscopies and she told me she prefers not to have it. My doctor must be pretty good with the camera because my throat isn’t sore at all.

I was wheeled into the procedure room. Up until now my mom had been with me. She had to go back to the waiting room. I don’t care how old you are, the part where your family has to go to the waiting room always sucks. Suddenly I’m surrounded by 5 strangers, hooking up my IV and taping stuff to me. They put a plastic device in my mouth to hold it open.

Then I woke up.

It was over that fast, at least for me. When I realized I was awake, and where I was, I cried. I remember telling the doctor I thought I was on the couch watching TV. The nurse dried my face. I think she felt bad. Maybe people don’t usually cry when they wake up. I told her about a spinal tap I had that was unpleasant, and how I had a similar reaction when it was over. I kept talking and telling her about random things so I could keep it together. I felt like having a panic attack. I had already been done with the procedure for 20 minutes when I woke up. It didn’t feel like it.

They brought me into the recovery room. It’s strange how quickly you wake up from propofol. I wasn’t even groggy. I was only regular “Lupus tired”. My concentration wasn’t 100% yet though. My mom came in and the doctor had already talked with her.

The doctor took a lot of tissue samples. I have a lot of inflammation, and from the samples he will hopefully be able to tell what kind. He will also make sure I don’t have any bacterial infections. I also have a small hiatal hernia. I’ve thought it a possibility before. He said it probably won’t get any worse than it is now. I will most likely be able to treat it all with a new medication.

I had a grumpy recovery nurse that luckily went to lunch, and in her place was a bubbly RN. He was fun, which makes all this medical stuff a lot easier to deal with. He liked my bracelet. I was really glad to see my mom. It doesn’t really feel over til you see your mom.

I had some ice water. They monitored my vitals every 15 minutes. The RN also gave me a post-procedural dose of hydrocortisone. I was a little headache-y. After the RN finished writing up the post-paperwork, I was able to get dressed. They wheel-chaired me down to valet parking.

I have a headache right now. But I probably would regardless. I do have a little bit of pain in my lower esophagus. I’ve been off the ibuprofen for 5 days and I have pain when I don’t take it. I am probably also a little sore from the endoscopy. I had trouble with heart palpitations a couple hours ago. I still feel a little short of breath. It can be a side effect of steroids.

I still feel achy from the Actemra. My back has had some soreness the past few days. If the Actemra works, I need some serious muscle rehab. My back is sore because I trimmed my toenails. I get sore from riding in the car, too. I haven’t been able to exercise or even do normal activities that would keep my back and abs strong, so I get sore from sitting. I’m hoping to exercise in the pool when they heat it next month.

The new Mario Party 10 is pretty good.

Actemra #lupus #RA #stillsdisease

I had my first Actemra infusion yesterday. It went well. The infusion center is pretty nice, much more comfortable than my previous doctor’s office. The nurses are more attentive and they took my blood pressure every half-hour. It’s nice to have an opportunity to talk to other people who are also there getting infusions.

It felt the same as my past infusions. They didn’t give me any pre-meds. For the first half, I got really sleepy. That usually goes away during the second half of the infusion. I got a little dizzy but realized it was from looking down, a problem I’ve had for a while. It’s hard to stay occupied during infusions if you can’t look down to read. This infusion took about an hour and a half. By the end I had a full bladder and a headache, a typical ending of all infusions.

I heard the nurses talking about another patient’s Rituxan infusion. They were talking about slowing it down to 7 hours because it can be a hard med to handle. My Rituxan infusions were done in under 2 hours. It’s a good thing I handled that medication so well, because my previous doctor could have made me pretty sick by rushing it like that(and she billed me for a long infusion, too). It’s another reason why I’m glad to have another doctor now.

On the trip home I was pretty tired. I had an errand to do and I felt a little out of it. When I got home and changed into pajamas, I started to feel really achy all over. My head was hurting a lot. I’ve been taking Tylenol lately since I’m restricted from using ibuprofen and other NSAIDs for this week because of the endoscopy. I played video games for a while. I noticed my concentration was absolutely horrible. The overall aching was worse with this infusion than my past infusions. When I went to bed I took some benedryl. That seemed to actually help with the headache a lot.

Today I am really tired. No headache so far, but I had a typical daily episode of being short of breath. I took some Xanax for it. Even though it’s not caused by anxiety, it helps. If it wasn’t for Xanax, sometimes I’d be too out of breath to move.

The MRI results came back of my adrenals, as well as a full report of the rest of my abdomen, uterus, and bladder. Everything is normal. No adrenal tumors. It’s great news, but it also means I’m back to square one in figuring out why I have high blood pressure, shortness of breath, etc. My next move is to see another cardiologist for a second opinion on my heart. My current one hasn’t found any inflammation around my heart, but he did say that sometimes it can be so small that it would be almost undetectable. He doesn’t think it’s necessary to do any more ultrasounds on my heart right now. I want to see someone new so they can look at things with a fresh eye. There has to be a logical explanation as to why I am so uncomfortable all the time. I will also probably be revisiting my endocrinologist soon, because it could perhaps be hormonal as well. We’ll see, I guess.

I’m going to take it easy today. The nurse said, and I quote, “Don’t hang around a bunch of snotty kids today.” She was saying it to be humorous, of course (well, sort of). But I know what she means. I can’t be around a lot of germs today. I’m too tired to do anything anyway.

Tomorrow is the upper GI endoscopy, with propofol anesthesia and IV hydrocortisone adrenal support. My rheumatologist said it would all be fine, even after just having an infusion. I guess I’m not too worried about it anymore, just looking forward to getting it over with. I’d like to put a stop to this awful acid reflux if I can. I miss Italian food. Like, seriously.

Well, that’s all folks. There is a lot of Mario Party in my immediate future. TTFN.

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.