chronic illness, chronic strategizing. #lupus.

I’ve been thinking about all the things I have to do during the day (and night) that are health-related. It seems like the list keeps getting longer.

At 6am I have to take steroids for my adrenal insufficiency (hydrocortisone and fludrocortisone, replacing cortisol and aldosterone). I used to set my alarm, but my cat got used to me getting up and started waking me up, so now I don’t have to anymore. Sometimes I am up before then, though. I get heartburn early in the morning occasionally that wakes me up. When that happens, I have to strategize a little because I can’t take antacid and steroids together, but I can’t take steroids when I have heartburn, either. I sometimes end up taking the steroids a few hours later than usual because I have to take the antacid first. I don’t know if that’s the right way to go about it. Who knows.

I get pretty congested from the benlysta, so I usually wake up in the morning because I can’t breathe through my nose, so that’s another thing I have to tend to.

When I do finally get up for the day, I usually have to treat a headache or widespread pain, or both. The only pain killers my doctors have given me are tramadol, fioricet for headaches, and duexis (ibuprofen). Tramadol works well for the widespread ache and nerve pain, and sometimes the tension part of my headaches. The fioricet is mediocre at relieving my headaches. Since it has caffeine in it, I usually end up splitting the pills in half, because I am caffeine-sensitive. The Duexis can be hit or miss. It doesn’t help at all with nerve pain, since it’s more of an anti-inflammatory, rather than having an analgesic effect. It can be helpful with headaches. Sometimes it’s the only thing that takes the edge off my headaches. But taking it too much can give you the runs, so it’s not always an option. It has to be taken with food, so the middle of the night is a difficult time to take it. I have thrown up a couple times from taking it, and if I have stomach discomfort of some sort I can’t take it, because it will make it a lot worse. More pill strategizing. Sometimes I have to deal with the pain because my stomach is too messed up to take anything.

I pour myself a cup of decaf, and sit on the couch occupied by some activity, and wait a little bit to eat breakfast. I have to wait til my stomach ‘wakes up’. I can’t eat right when I roll outta bed. I’ll have trouble swallowing, or the food won’t digest and it will sit like a rock for hours. 

I get bouts of heart palpitations after I eat for no real reason, and sometimes chest pain and heaviness. The only thing they’ve given me to relieve it is Xanax, and the doctors haven’t spent much time looking into it. It’s not anxiety, it’s a reaction to eating of some kind, but since Xanax helps all those symptoms, it works as an off-label treatment. I’ve had to cut so much out of my diet because of the sensitivities. No microwaveable frozen food, no jarred sauces, no canned soups/chili/beans/vegetables unless the label says “no salt added”, and the chances of finding that are slim. I have to say no to most snack foods, chips, pretzels, crackers, popcorn…unless I closely scrutinize the labels and find no weird salts or preservatives. I can’t eat lunch meat, it’s just too salty no matter what. I can’t have ham or other pre-cooked or cured meat. I can’t have anything instant because it usually has MSG or preservatives I can’t handle. I can’t have powdered gravy or dressing, or powdered drinks. I also have a sugar sensitivity and I’m allergic to red food dye, so that cuts out most bottled drinks, even fruit juice. Bottled fruit juice isn’t much healthier than soda, though. I mostly drink water, which in the end is healthier, but I do miss having a big glass of raspberry iced tea on a hot day. Speaking of drinks, no alcohol for me either. Even just half a drink makes me feel like crap, and it gives me insomnia, and sometimes a headache. Me not drinking seems to be a deal-breaker socially. It’s annoying.

Grocery shopping is a nightmare sometimes, because there isn’t a whole lot of food that isn’t processed this way. It’s so bad for everyone, not just me.

With all that said, I can’t eat restaurant food, because I have no idea what is in it. Some restaurants might have a menu that breaks down the calories and fat, but they never tell you how much salt is in each dish. I think if people knew, they wouldn’t eat restaurant food. Sometimes news reports release a ‘saltiest restaurant’ report, and it can be frightening to read.

So, what can I eat? I can eat a meal lower than 800mg in salt. It has to have no preservatives. I eat food cooked from scratch all the time now. I eat a lot of chicken, vegetables, noodles, rice, and fruit. I can eat turkey burgers, and the occasional steak or pork chop. For breakfast I usually have eggs and toast, or low-sugar cereal with soy milk. Snack time can be a bit difficult, since ‘from-scratch’ snacks aren’t exactly a ‘thing’. I’ve learned you can put peanut butter on a lot of things. I eat graham crackers, fruit, unsalted pretzels or low-salt chips, nuts, and sometimes cookies.

That’s pretty much the extent of my diet. Social eating can be extremely awkward, as you can imagine.

At noon, it’s time for another dose of steroids. I take the largest dose at 6am, and taper down from there. It mimics the adrenals natural release of cortisol.

By now, I’m usually ready for a hot shower. When I get up in the morning I’m extremely stiff, and it never really goes away. A hot shower helps, but it’s not the cure-all. My rheumatologist always asks me how long my morning stiffness lasts. I don’t really have an answer. It never really seems to go away, unless I take a hot shower and take pain pills. If I don’t do either of those things I’ll have it all day long.

In the shower, I wash and condition my hair with shampoo that will hopefully help it not fall out. I use apricot scrub and acne wash. When I shave my legs I have to be careful not to fall, and make sure bending over isn’t going to give me a headache. I sometimes sit down on a shower chair, but holding the shower sprayer can be tiring too, and cold when you don’t have the water constantly on you. It all depends on how I feel that day. I’ve gotten pain attacks in the shower and felt like I couldn’t move to get out. I also have a strange problem where showering gives me heartburn, and have felt sick to my stomach 10 minutes into showering. If I know my stomach is bothering me I take antacid before I get in. I can’t take baths anymore because I have the same problem, and lying back in the tub makes the stomach acid creep up and irritate my lungs.

After I shower, I use lotion with sunscreen, since lupus basically makes you allergic to the sun. I use cortisone cream under my arms before I put deodorant on. I’ve had a mysterious irritation under my arms that appeared when I started treating my Addison’s. It is so bad it dictates what kind of shirts I can wear, and I have to buy the expensive clinical deodorant, because regular deodorant makes it worse. I can shave, that doesn’t make it worse. I’ve stopped shaving before and had no change in irritation. Stubble actually seems to make it worse. I don’t have much hair so it’s usually only one swipe of the razor anyway. If it’s hot out, I add baby powder to the list to keep the irritation on the rest of my skin at bay. When I’m done with all the lotion and whatnot, I sit in front of the fan to let it dry, because if I put clothes on moist skin, it irritates it for some reason.

I spray a detangler in my hair or use a leave-in cream, because combing it out without it hurts my scalp. Lupus is notorious for scalp soreness. I sometimes feel like my scalp has a chronic sunburn, and it’s gotten bad enough that I can hardly comb it. I’ve discovered that unfortunately, this isn’t the only area with hair that can become sore like this, if you know what I mean. I’ve had the pain from that keep me up at night, for no real reason other than lupus sucks. It’s pretty awful. Back to my head, my hair breaks off too, so it helps that it doesn’t get tangled. After that it’s moisturizer for my face, Restasis eye drops, gel lubricating eye drops 15 minutes later, and if my eyes are up to it, contact lenses. I brush my teeth and use mouthwash 3-4 times a day because of the dry mouth side effect. On a good day, I might be able to do hair and makeup. I probably do that once a week. It’s hard to blow dry my hair when my scalp already hurts, and if I have a headache it’s definitely not happening. Most of the time my hair air-dries, and I wear it in a pony-loop. Makeup can make my dry eyes worse and often shortens the time I can wear my contact lenses. Lately the humidity here has been under 10% and the wind is blowing hot air in from the desert, which makes wearing contacts impossible, and causes all sorts of other fun dry problems.

Lunch is probably the most difficult meal to not eat preservatives, so I usually have a dinner thing for lunch. Chicken, noodles/rice and vegetables. Sometimes a turkey burger or chicken burger and carrots on the side. Or leftover dinner from last night.

I get bouts of not being able to swallow certain foods. It gets stuck. It comes and goes. I also have bouts of feeling full too quickly, which is intermittent as well. This further shortens the list of things I can eat, but usually only temporarily. I haven’t yet investigated why it happens, simply because I’m trying to figure out other more bothersome symptoms right now. Not that it isn’t bothersome, it just isn’t an emergency right now.

I, of course, have a hard time putting on weight. I’d like to be at 120lbs, but I sort of go up and down between 107-112lbs. I haven’t really been able to eat anything fattening enough consistently to put weight on. The weight gain nutrition shakes have too much bullshit in them. They have way too much sugar, and are made with milk, and I’m pretty lactose intolerant. I’ve tried the lactase pills but they only really keep you from having to run to the bathroom. I still get other fun symptoms. People tell me to “eat like crap for a while” to gain weight but I just can’t do it with all the food sensitivities. And I know it’s cliche but you are what you eat, and when I eat like crap, I feel like crap too. The best I can do is eat 3 decent meals a day and a few snacks in between, and not stress about putting on weight, just be worried about nutrition instead.

Some days I go out to run family errands. I have to be careful how long I’m on my feet, running around from store to store. Sometimes if the stores don’t have the air conditioning on, and this exacerbates my pain and fatigue. It can get so bad that I don’t want to stand anymore. Most of the time, we only go to one store, and I do OK. But when I run multiple errands once in a while, I sometimes pay for it. I’ve had pain and weakness even the next day from being out too long. “Too long” isn’t very long at all.

At 3pm I take a dose of fludrocortisone. It’s a steroid that helps retain a healthy level of sodium in the blood stream. Without it I’d pee out all the sodium and get muscle cramps and low blood pressure. My salt sensitivity isn’t related to me taking this steroid. I tried taking less and I just felt like crap. I’ve been on the fludro since 2005 and only started having a salt problem recently so that wouldn’t make sense anyway.

If I didn’t have a headache in the morning, I would most likely have one by the afternoon. I get a headache every day. Certain things make it worse, like being in the car, menstruation, allergy season, stress, and sitting/lying in certain positions. I can’t look down at a book or screen, I can’t sit “propped up” in bed. I can only really lie on my side. My living room is arranged so I can watch TV on my side. If my head is already hurting I can’t bend over to pick anything up or else the pain gets a lot worse. Sometimes the pain is so bad, and lasts for so long, that none of my medicines work for it, and I end up waking the next day still having a headache. I’ve had this happen for 5 days in a row before. It’s miserable and debilitating, and makes it impossible to make any plans ahead of time.

My headaches aren’t like normal people headaches. I sometimes wonder if I have nerve damage in my neck and jaw because of how bad they are, and how difficult they are to alleviate. The chiari diagnosis is still up in the air, but even if I do have it, I still think there are other reasons besides chiari for my headaches. I get muscle spasms in my back and neck that are like rocks. I’ve tried different muscle relaxers but they never really seem to work out for me. A lot of the time I put a hot pack on as a distraction. Sometimes I throw up. I can’t sit upright when they are really bad. Standing or lying flat on my side are the only things that don’t aggravate it.

When I ride in the car, it makes my knees hurt really badly for some reason. I feel like I have hot, sharp nails in between the joints. Sitting still seems to create this pain. When I get out of the car, going up stairs can actually be helpful. Tramadol is good for joint pain most of the time but isn’t that helpful for my knees unless I take it AND move around. If I take tramadol and continue to sit still in the car, it’s useless.

For dinner, my mom bends over backwards to make sure there isn’t anything in the food that will make my heart freak out. She’s done an amazing job. People at the grocery store get aggravated when we’re standing there reading the labels, but we do what we have to. In the long run it’s better for everybody not to eat processed things, but it’s pretty difficult, and it makes me sad sometimes. I miss eating ‘fun’ food. Not that my mom’s cooking isn’t awesome, because it is, but when you’re having a super bowl party and you can’t eat the munchies provided, it’s a real bummer. My family makes accommodations for party food too, but I still miss indulging and not having to worry about heart palpitations and chest pain, and falling asleep after having an attack like that. It really is that bad, and it frustrates me to no end.

The strange thing about all of it is that with the Addison’s diagnosis, it is recommended that I eat more salt than the average diet because I’m so prone to losing it through urination. I did for years, with pickles and cheese and olives. I craved it like crazy, which is normal. I still do sometimes but the consequences are a huge turn-off now. There haven’t been any Addison’s repercussions for me from cutting out salt though, which raises an eyebrow.

Sometimes when I’m extra Lupus-y, I get heart palpitations after meals no matter what I eat. I had about a week and a half where I was like that, and then it stopped.

It seems like when I get my periods, I have a mysterious symptom like that. My body chooses a target and I’m fucked for the next 1-2 weeks. This time around it was headaches. Last time it was the heart palps after meals, and the time before it was vomiting and stomach upset.

*Spin the lupus wheel and see what you get this month.*

Before and after dinner it’s TV time with my family. I used to get such headaches from sitting and watching TV. But the combination of moving the couch and an ergonomic pillow have eased the problem. I still go to bed with a headache a lot but I don’t sit there the ENTIRE time with a headache like I used to. I used to look at the clock every night wondering when it was time to lie in bed. I very well could have just gone to lie down early but I would have ended up doing that every night, missing out on being with everyone. I’m not willing to sacrifice that just because of pain.

At bedtime, it takes me a good half-hour just to get my shit together. When I have couch time, I set up camp downstairs, with my pillows, laptop and various other things to keep me busy, but at night I bring it all back upstairs. I can get help but don’t usually ask. I figure it’s good exercise to carry things up the stairs a few times. It sucks sometimes, though.

After transporting the goods, I have to go do all my bathroom-y things. I’m a person who pees a lot, especially at night, mostly because I drink a lot of water to compensate for the hot dry hellhole in which I live. So I usually run to the loo twice before I actually settle in. I have to wash and moisturize my face again, for dry skin and acne. I use the Restasis drops a second time. I brush my teeth and use mouthwash. If I’m having a nerve pain or itching problem I take a quick shower. I grab all the OTC medicine I might need from the bathroom (tylenol and antacid). I re-bandage my biopsy wounds. I use nasal spray because as soon as I lie down my nose plugs up. I take all the bedtime medicines. Xanax and a split-into-thirds dose of doxylamine succinate, both to help me sleep. Lying down sometimes makes my heart pound (and no, it’s not POTS, salt makes POTS people feel better, and me feel worse) and the doxylamine is a sleep aid made from an antihistamine. If I don’t take both of these things, I will never fall asleep I laid there all night once. And if I do happen to fall asleep without them, My sleep apnea is worse for some reason, Even weirder, if I take too much of either, my sleep apnea is also worse. So I’ve had to find the ‘perfect dose’ balance so I don’t get fucked up. I also take Plaquenil (hydroxycholorquine) which is an antimalarial that for unknown reasons, lowers lupus activity. It also irritates my stomach, so that’s why I take it at night. Lately I’ve been having severe itching caused by nerve issues, so I’ve had to figure out a way to treat it so it doesn’t keep me up. I can’t take tramadol at night because it worsens my sleep apnea. Any pain pill that causes drowsiness gives me a problem, so I often lie there in pain because I can’t take the med that helps, unless I want to wake up gasping for air all night, and have subsequent symptoms the next day from not sleeping and having adrenaline rushes all night. The duexis isn’t really a pill I can take in the middle of the night because of what it can do to my stomach. I still do take it occasionally when I don’t have much of a choice though. I usually pay for it via stomach cramps, but if I have a massive headache keeping me awake sometimes the trade-off to stomach cramps is better. I also get leg pain in the night that causes restless leg syndrome. Yes, it’s a real thing. If you’ve ever worked out too hard and jiggled your leg to make it feel better, that’s what RLS is like, but you do it in the middle of the night, and it keeps you awake. I’ve had a lot of relief from taking Magnesium Oxide, 400mg, and I recommend it, but I still get pain sometimes.

One thing people don’t seem to understand is that painkillers are a trade-off. They don’t relieve pain without causing something else, like stomach upset, dizziness, fatigue, depression, weird dreams, altered breathing, the list goes on. You can’t just take pain pills and feel like a human again. You have to decide if the side effects are better than the pain, and sometimes they’re not. Sometimes pain, as bad as it can get, is the better, more predictable choice. But there are also times where ‘a change is as good as a rest’ (to quote Thomas the Tank Engine) and trading pain for side effects keeps you sane. More strategizing.

I sit and have to think about what pills are the right pills to take, and when, based on the time of day, the side effects, the other pills I have already taken, and whether or not I have food in my stomach. It takes a lot of mental effort on a daily basis. I can’t just ‘take every 6 hours’ like the bottle says. It’s not that simple, because it’s not the only pill I take. I take about 8 different kind of pills to manage everything, each more than once a day. That doesn’t include over-the-counter and vitamins.

Sometimes 4am rolls around and I just can’t sleep anymore. I might just suddenly feel wide awake, or it might be because of various symptoms. I’m quite thankful for music and scrabble on my tablet, it has passed a lot of insomnia hours.

Somehow despite the constant pain, strategizing, and just plain dealing, I somehow manage to still be in a good mood most of the time. I’m used to doing all this. The list has gotten significantly longer just in the past 2 years or so, but I’ve seemingly adjusted to it. This list of things I tend to every day. Some of it is second-nature, some of it takes some mulling-over in my head. Sometimes I am unable to make a decision on what to do when, and I ask for advice. I get a lot of help from my family, which has made the adjustment a million times easier. I have my days where I get frustrated with it, but it’s been so long since I’ve known any other lifestyle that I’ve settled into it.

 

Sleep Study #lupus

I had the sleep study done Monday night. I dreaded it the whole day. It was pretty awful. Nothing gives me anxiety like “Hurry up and go to sleep”. I had the worst time relaxing.

I got there at 9pm. Well, like 9:08. But the technician was helping another patient at the time, and didn’t get to me until 9:45, so that 8 minutes didn’t matter. It was just me and one other person having the study done that night. I didn’t meet him or anything, but I’m assuming his name was Mr. Leaves-the-toilet-seat-up. The sleep study rooms shared a bathroom and I had to grab a tissue to put the seat down every time I went to the bathroom and it made me really irritated. I guess I haven’t quite mastered the whole “pee standing up” thing yet.

Anyhoo

The technician running the study was really sweet, which was nice, because I’m shy about asking for help, but she made it easier. The room was a lot like a little hotel room, without windows. The bed was pretty comfortable. I brought my mom along, and she had to sleep in a recliner. I was hoping they would be more accommodating for family, since I’m probably not the only one that brings someone. The tech started by taking down my ponytail and putting waxy stuff in my hair so leads would stick to my head (I later figured out in the shower that the waxy stuff is water-soluble and washes out easily, so no worries there) and from there she taped leads to my face too. Two on the forehead, one on each temple, one behind each ear, one on the chin, two on the larynx, and probably more I don’t know about. I also had one on each ankle and a little device under my nose to record breathing sounds. All the leads were connected to a box on my chest that hung around my neck. It’s a good thing I’m not a stomach-sleeper. The box was connected to a machine that records all the information from the leads. I also wore a pulse-ox on my finger. When I had to pee, I had to ask, so I could be disconnected. There was an intercom next to my bed, so it was easy to ask for help.

The rooms were more soundproof than the average bedroom, but not completely. I brought earplugs to sleep in, and I was glad I did, because the patient in the room next door was noisy. I had a lot of trouble falling asleep. I was anxious about the whole thing, and I couldn’t relax. I got up to go to the bathroom, and eventually fell asleep after that. I think I slept about 4 1/2 hours. I woke up at 20 til 5. I was going to be woken up at 5 anyway, so it worked out. I woke up because I was so congested I couldn’t breathe. That’s a regular problem for me because of the benlysta, and while it’s not the sole cause, I think it contributes to my sleep symptoms.

I’m hoping I was asleep long enough and deep enough for the computer to get the information it needed. My biggest worry is that they’re going to tell me “everything is normal”, because it isn’t. I have nights where I continually stop breathing, and it feels awful. I get afraid to go to sleep. Some nights are worse than others. Certain medicines make it worse, so if I’m lying there in pain in the middle of the night, I can’t take anything. I can just lay there and hope I fall back to sleep incidentally. I almost always wake up with a headache in the morning. I don’t know how often my breathing stops in the night. Sometimes I remember it, but there are probably more times when I don’t.

My next appointment with the neurologist is on the 31st. I will probably get the results from both the sleep study and the nerve biopsy. My next benlysta infusion is the 28th. I have an appointment with another neurologist on February 3rd. I’ve had the appointment since before I started going to a local neuro, and I still would like to go for another opinion.

 

Nerve conduction results, nerve biopsy #lupus

I had an EMG/Nerve conduction study done on my arms and legs separately, and on Tuesday the neurologist told me that my arms are normal, and that my legs were normal too, but “borderline normal.” He is now investigating Small Fiber Neuropathy, and today I had a nerve biopsy on the skin on my legs. He took two samples, thigh and shin. First, I got a lidocaine shot in each area. That was actually the most painful part, which wasn’t really painful, just a needle and a sting. When he actually took the skin samples, I didn’t feel anything. Each sample is about 3mm wide by 3mm deep. For bleeding, he typically gives his patients epinephrine with the lidocaine, but since I have trouble with heart palpitations, and since I don’t bleed a lot, he skipped it. So far, so good. I haven’t had any excessive bleeding. I just have to take care of it like a cut with Band-aids and Neosporin for the next 7-10 days.

Here is a shot of the shin area. This one stopped bleeding completely.

 

 

The one on my thigh bled a little when I changed the bandages, but it stopped before I put the new Band-aid on it.

He says I’ve passed his neurological exam with flying colors. He believes that my symptoms, like the tingling/numbness/pain are probably related to a connective-tissue disorder. I had some blood drawn and peed in a cup this morning. He’s also testing me for Sjogren’s. I’ve been tested before and it was negative, but the dry eyes and mouth warrant another test. Sjogren’s can also cause joint pain and fatigue from my understanding.

In other news, I’ve been waiting to do a sleep study, and I was originally going to use the at-home device, but my insurance prefers I do one in-office, and my doctor said those can give him more information anyway. It’s scheduled for next Monday. I don’t really feel like sleeping somewhere else, but if it means correcting this breathing problem and stopping the heart palpitations, then I’m all for it. I hope I can sleep there, and I hope that if I do have sleep apnea, their machines catch it and record it.

My sleep apnea symptoms seem to come and go. I probably have it all the time but some nights are worse than others. I kept gasping awake for most of the night last night. It’s not usually that bad. I’m not sure what made last night worse. It was really uncomfortable. I do notice a correlation between heart palpitation/chest heaviness/dizziness/fatigue severity and the severity of my apnea symptoms. It seems like I’ve felt worse today because of last night.