As I've been doing lately, I'm just sharing my late-night journaling, where I process my days. I type these in my phone, since I can barely type on the PC. Sometimes, it's just stats, and sometimes more reflections. I've put some parts in bold for my own reference.
May 3 I overbooked myself tonight, cooking a batch of quinoa and taking a shower. My fever was 99.5 before but up to 100.3 now (4:30) with chills. Feeling really feverish. Yawning hurts my jaw a lot.
After a real rough time in the shower, tonight, my knees are swollen, but sitting and standing has been easier, weirdly. I hope that sticks around. Jaw pain and cough are irritants tonight. Hand pain is still very subtly improving. Hard to say about my overall state. No brainstem aura today, although plenty of stupor. Still savoring the low temps while I can.
I wish I could get in and out of the shower easier. It's so hard and very precarious. I just absolutely cannot risk a fall since there is no treatment for any injuries for me.
May 5 Temperature came up today. High of 79. Bedroom was 78 while I slept. Of course, warmer weather means smellier indoors. It was that in-between temperature where I go back and forth between rooms. I ate my meals in the living room with the fan ventilating in my face. Spent the time between meals in the bedroom where the smells are better filtered. My fever has been lower today (99.2-99.5). But my post breakfast heart rate was 116. Yikes. That was a bad sign for me. My digestion also took a pause, which I can see is a sign. I did all right until about 6:30. That's around when the brainstem aura started. And it went on and on. Repeated loss of consciousness all the way until 8:45. Ugh. Absolute misery. I came around slowly, knowing I needed to eat quickly. I couldn't talk, but I painfully gathered my food and ate. I felt so rough. I got a heavy over-temple headache, felt nauseated, bad tinnitus, stuporous, irritable.
I was lucky for more clean air for ventilating today, to help make up for that indoor nastiness. Rain is coming in a few hours. I suppose my body was letting me know, although sleeping in a warm bedroom didn't help. Tonight (4:00) fever went back up to 100.3 and digestion resumed, so my body's falling back into its usual rhythm. Hot chills. Cough. Very achy head. Hips are hurting more.
May 7 I didn't write yesterday, because it was practically a carbon copy of the day before. Same horrifying aura in the same window. You'd think you'd get used to it, but it never feels like something you could get used to. Similar the rest of the day.
Today, a slightly different schedule for a lot of the same stuff. Usual unbelievably painful wakeup. Although I divided my sleep in half to allow for the weekend schedule. I slept enough. Started the day late. I finally noted the timing of my morning routine, and it now takes me 40 minutes to complete. Bathroom trips. Getting dressed, including knee braces. Washing my face and some body parts with a baby wipe. Applying milk of magnesia deodorant. A light tooth brushing with water. Maybe open the dishwasher to dry. Refill my water and grab my biscuits. Then settle in wherever I'll settle in. I usually listen to one of my Spanish podcasts during that time. It is so exhausting. And it takes so much longer than it should due to my reduced ability to move and incredibly slow pace.
Anyway, today after my "morning" routine, it was about 3:00. It was a warm day (83?), So I was in the bedroom. By about 3:40, I'm guessing, the brainstem aura began. I already knew it was coming from the day's bad omens. Digestion paused. Brain tingling. Ears ringing. Heart pounding. All predictable. Then, sound got amplified, and I kept getting startled. My body got really heavy. I realized I had missed a chunk of the show I was watching, so I gave in and stopped the sound, put on my collar, and waited it out. It was a very long wait. I think around 6:10, I finally started to come out of it. I had ins and outs, but was paralyzed the whole time with falling sensations. I lost large chunks of time. Three days in a row now with these huge chunks of time lost in such a state. I pretty much blame the temperature change, barometer, rain. Tomorrow should be better, maybe.
The rest of the night has been normal. Obviously, I have layers of migraine pain now. Fever back up to 100. HR 90. Digestion resumed, although it's a mess after all this.
I'm still having urgency troubles with my slow bathroom time. G helped me out a lot tonight. Nothing major. Just so many of the little things that I used to take care of myself. I feel grateful and also frustrated and like an enormous burden. Like he didn't have enough to do before? Ugh, I hate it. I hate to think of all the things I took care of before that are now shoved onto him with me having to ask for favor after favor. Ugh.
The last thing that happened was I ran the AC last night. For many hours(10). The living room was hot and humid with the bedroom even worse. But when it's on, I absolutely cannot stand it. It is deafening. Literally feels mind numbing. Louder than our mega air purifier. Plus, I can't take the cold breeze. I put up with it for ten hours last night, unable to listen to anything or think much of anything, all to try to get the bedroom cooler for the next day. Fell asleep under blankets, then had to get up to move to bed. My muscles were completely rigid from the cold. All clenched. I could barely move until I started shivering violently. Making my way to the bathroom and to do my bedtime routine was almost impossible (more than usual). It was only 67 degrees, but normally, I would need winter clothes for that indoor temperature. Layers of it. I was barely dressed from the heat of the day.
And I still woke up in a 77 degree bedroom. Could be worse, but that type of temperature change during sleep is rough.
So, I need to reassess my cooling plan. Tonight, I'm going to try only one horrible hour of that blasted air. I appreciate when I can use it, but I can't tolerate the process of changing temperature. So I'll try just one hour tonight. See if it does anything. The bedroom is pretty hot and humid, so even though tomorrow is a cooler day, I should run it some. I should be more grateful for days with access to AC, since there are so many without it.
May 8 A cooler day, but with low pressure still. I didn't get to sleep until 6:30, and then my sleep was disrupted by bladder needs. Both wakeups were urgent. But my body doesn't move urgently. I don't believe I know any faster way to get out of that bed and to the bathroom. It takes at least several minutes. Anyway, the day started the same. Same terrible pain and fervent death wishes upon waking. But I got to visit with my mom, back from a very short trip, which was so nice.
But my heart rate was 108 after breakfast. Bad sign. I seriously don't know how to keep facing days that are so intensely punishing. The heart rate was the sign that the aura would come later. And it did. Around 7:00-8:30 today. All the usuals. I have found that the less sensory input, the less aversive the experience. So I put on my collar and stop all sound and light that I can. The rigid collar is best. And the recliner is best. There are way too many ways to end up in a bad position in bed, given that nearly every position is bad. It's still a challenge during sleep, trying to get my legs in a tolerable position that won't cause agony.
After the aura, or near the end of it, the migraine pain set in. Strangely enough, my actual head pain has been less intense lately. That used to be my primary symptom. I don't miss that degree of head pain. But today, it was more elevated. The layers of migraine, including over my temples, in my right jaw, and in my left ear. But the new layer is left sided near the back and more intense and constant than some of the other layers.
All of today, my cough has been bad. And tonight, my fever's up to 100.3. I'm weary and scared to face another day. I can't keep doing this. I need it to stop.
May 9 Well, shit. I had a devastating realization today that I don't want to admit could be true. My coughing and wheezing might be being triggered by my biscuits. An absolute staple food for me whose recipe has been simplified and perfected that I've tolerated for a couple years(since they discontinued my cereal, and we desperately sought a replacement) and got me out of the crisis weight zone (although I'm already dangerously close again). I cough starting with my morning biscuits for an hour or two, depending on the day. I have reduced this to a pretty small portion to try to improve my schedule, so maybe that's why the reaction is milder in the morning. I eat less. (So I get hungry for lunch sooner.) And then, most of the day, I don't cough much. By the time I go to eat my nighttime biscuits (10:30pm), I'm not coughing at all. But today, it was particularly obvious that the coughing and wheezing started with my first bite and went throughout my eating time. Then, I continue coughing with a little less frequency for a couple more hours. When it stops depends on the day, and presumably the level of histamine or something in my body on a given day. It feels kind of like I'm choking on tiny bits of my biscuits. But it's not that, because it continues. I have no idea what I will do for my diet. What I can do for those calories? I don't know any other grains I tolerate besides oat. And they contain oat flour and oat milk and olive oil. I am currently at a loss (and still coughing at 3:30). I mean, for now I can survive this reaction, but these things progress, and I won't be able to risk something that affects breathing (early anaphylaxis). I'm afraid my pounding, fast heart rate could also be associated, although that could just be from the fever. The association wasn't even clear to me until now. I'm afraid this will be a time of experimentation, and that has gone badly for me in the past- a single taste causing a setback. I have successfully added foods, but not grains. Just vegetables, actually. Grains have always been very tenuous. But me without grains=💀. I become skeletal. I'm already quite close right now, but I technically have some body fat. I can't let that go. I don't know what to do. I guess it's not quite urgent, since I've been surviving this cough since March 28th. But with the timing becoming more well-defined, I'll really have to find an alternative, because that's progression. God, I love my biscuits. I love how they taste. I love that there's no prep time/energy. I love how easily they go down digestively. They help with regularity and don't seem to cause heartburn. (I have heartburn every night, but not after my breakfast biscuits, so I don't blame them.)
Of course, I understand it's possible and even likely to develop intolerances to food you eat daily. But my body generally has really appreciated regularity. Even a change in the order in which I eat my foods can ruin my day. How am I supposed to change such a staple? And to what? I've been through this before.
I'm going to try to save that concern for another day. I won't make an immediate change, because I would starve. I've done it before, and I don't want to go back. Goddamn there's that part of me that just thinks, "Well, if the anaphylaxis gets me, you can't say I didn't do my best." But I know very well the horrors of anaphylaxis, and this is very early stage. Nothing would be quick and easy. And I would end up in a hospital, which is a worse nightmare than death by anaphylaxis.
Anyway, today, I dealt with the coughing and pounding heart (HR98), jaw/ear pain, back pain, obvious impossible leg pain, and then I fought off a stuporous state all day. Managed to avoid loss of consciousness, but my body was trying. I had yawning spells and sound amplification. But it fortunately didn't progress today. I showered today, so I'll likely be up later. Fever is 100.3 tonight. HR 92. Pretty consistent. I soaked my bed in sweat last night. I hope to not do that again. But tomorrow will be a warmer day (76), just warm enough to likely be confined to the bedroom during the day.
Oh my gosh, I can usually put things out of my mind incredibly well. But this one feels like doom. Those biscuits have honestly been a lifeline. I don't want to starve again. I'm already way underweight, but at least I'm not starving. I've actually noticed decent hair and nail growth, which only happens with decent nutrition. Why would my body fight what it needs? I know that I don't particularly tolerate most of my food, and that tolerance can vary over time. But this seems to be a consistent, new reaction, and I can't ignore it for long. Goddamn.
May 10 Well, today was a tiny relief. I believe I owe it to the barometer finally being stable and at a happy level. The only symptom I didn't have at all today was the brainstem aura, which is HUGE for my quality of life, although just one of many components. I was so conscious, I actively participated in a debate in my Spanish class. And it was fun and easy! My previous class last Thursday, it was all I could do to keep my eyes open with the volume at its lowest setting. I was genuinely alert nearly the whole day. What a change.
My post breakfast heart rate was 89! And tonight, it's 86. I haven't felt below 90 in a long time. My daytime temp was 99, and tonight, it's only 99.5. I'm sensitive, so I still feel hot/cold chills a bit, but it's better. Every other symptom feels a little lighter today. My knee pressure and ability to stand up was a little better. I coughed during breakfast and again tonight. But much less than the violent coughing of yesterday. Interestingly, just as I approach making dietary changes, I noticed a slight difference today. I coughed, just twice, before even eating my nighttime biscuits. And what I noticed was that my reflux from GERD was very bad at the time and approaching my throat. A chronic cough that gets worse at night can come from GERD, especially when it comes up toward your throat, like with LPR. I've always had GERD, and since it's been untreated, I've often progressed to LPR. So that could be contributing greatly to my cough. However, as I sit here tonight, my reflux is bad, and my cough is not. So it's a light correlation for now.
This gives me further experimenting to do, none of which I want to do, because I don't want to change my food routine that feels reliable and comfortable.
I had already planned on tomorrow being a day without biscuits. I need to eliminate what is coming from that, if possible. Although I won't know what baseline to compare with given how today went. But the plan is to eat my plain potato when I would normally eat biscuits. Both times. And just see how it goes.
Another idea I'm thinking of for another day is making biscuits with sorghum flour, olive oil, and water, replacing both the oat milk and the oat flour. I have no idea how it will bake or taste or of it will even be edible. But it's an idea. It's a new grain for me, so it could go either way.
Finally, with this reflux cough idea, the only thing I can really think of is pureeing my food. I already follow all of the GERD rules to an extreme. I don't lie down all day, and then I still don't lie down until 6-8 hours after my last food. If I pass out during the day, I stay sitting up and put on a collar to support myself. Never lying down. And I don't have overnight reflux. I don't go to bed until that has calmed down, even though many nights it takes a lot of baking soda water to do it. 6-8 doses usually. I know from past experience that I have GERD with any diet. But maybe the amount of roughage, which is more than I ate most of my life, is too much. But it's key in my diet, so I can't eliminate it. And I already steam my food pretty well-done. I really don't want to head down the slippery slope of decreasing portions. So all I can think of is pureeing the roughage. Mostly carrots and broccoli. I guess I should include my asparagus too? I can't imagine even being able to get out and use and then wash my food processor even once, much less as part of my cooking routine. Sounds impossible in my current state. So this would be a big task.
But I am short on ideas, and it's probably something I should experiment with.
I'm so afraid of losing any further weight or strength. My BMI is currently at 14.8, which carries very high health risk all on its own. (Although I have to go based on my height when my legs straightened. They don't anymore.) I've still got depressed hormones with amenorrhea. So I will keep pushing through and trying to find food my body accepts better. I really hate pureed food, especially broccoli.
Oh well, tomorrow is a no biscuit, extra steamed potatoes day. We'll see how I react. Of course, there's another factor, that tomorrow is a warmer day. So it will have some extra challenges.
In any case, I am grateful for the lightening of my load, even if just a bit today. If you are reading this, do not get your hopes up! Please. My body is very disappointing. And disappointment hurts. I can't handle those hopes.
The caveat is that this is not the first time I've had episodes of skin patches, fever, and increased pain. It is many magnitudes worse, but not the first time. And those ended up being episodic. So there is potential that this will be episodic, although still progressive/degenerative over the arc of time. Anyway, I am gently aware that it could let up. But I'm not holding my breath, and I get to be pleasantly surprised if it happens. For now, today was just one day, and a little relief is a little relief.
May 11 Interesting day. I did the no biscuit experiment. Ate plain white potato with a little oil instead both times. I had a little coughing after breakfast, but not much. I had even less coughing after my nighttime potato. But I am hungry! But there's been some coughing as the night went on. Contributing factors seem to be: reflux and my nasal rinse. Basically, I think my cough reflex is sensitized and gets set off by a number of things, the biscuits being a major contributor. But it was amazing to be able to be on a phone call as I ate at that time and not cough throughout.
Today was a warm day in the bedroom until a pleasant air-out around 8:00. I did well with consciousness. My heart rate had some high elevations today though. Up to 115 at times. Fever has been low. 99.3 tonight. Not sure if it got higher.
There's some rain coming through tonight, and I'm starting to feel it with neuro symptoms here at 4:00. It would be pretty late and confusing to pass out right now. But sound is amplified/startling, and ears ringing a lot, along with feeling heavy. My neck is in spasm too.
I feel like there are signs of this mega flare lessening, but I have no idea what damage is permanent. I've got some more prominent psoriasis patches. My knees seem permanently damaged, but they seem to have less fluid in them than they have for months. But the aching is so bad, and the stiffness and mobility seem the same. Fevers are lowering. My injured right hand is healing ever so slowly, although the pain is also increased in the outer part of the hand. Typing on a keyboard is too hard right now. I'm not sure what else. Don't want to get ahead of myself. More food experimenting to come. I can't say anything definitive yet. I'm certainly scared of the prospect of losing a staple.
For tonight, I'm hungry. I guess I didn't make up for the calories well enough, and not the nutrition either. I hate being hungry when I have to fast for 6+ hours before sleep. But I'm also never tempted to do anything about that hunger because of the heartburn.
May 12 Well, I went back to eating biscuits today. There was a bit more coughing, but no violent coughing. Nothing conclusive. I have new sorghum biscuits to try, and food trials have to be done very carefully. I think I'll try a crumb tomorrow. My fever was just 99.1 during the day and 100.2 tonight. A bit higher than I was hoping for, since I'm liking the narrative that the flare is easing off. I still think it is based on the decreased knee fluid. It is really hard to recognize and admit any improvement when every moment and movement are still so difficult. But I'm trying, while also trying not to get ahead of myself.
Pain is so widespread. It isn't actually that every bone and joint and square inch of skin hurts. It's just so many specific hurts, hot spots. My feet, my fibulas, my knees, of course, sometimes my femurs, my hips, my sacrum, a region of my thoracic spine, my shoulders more or less at times, newly my left humerus near the elbow, my right hand especially, but in a different way my left hand/wrist, and then everything above the neck to varying degrees, especially trigeminal/jaw and my brain. I know it sounds like the whole body, but it's not. Just a lot of it. My fingers don't give me trouble if I'm gentle (although my whole right hand is still largely unusable).
My thoracic spine hurts so bad when I inhale deeply that I can't sneeze anymore. The body aborts the sneeze when it feels the pain. That's a newer one.
The right hand and knees are the true hot spots right now. Any slight bump or touch can feel like stabbing pain, but the degree is slightly less than at the peak. I wear a protective wrist brace and knee compression sleeves all day. My knees are so sensitive. If I am at rest, and the angle of the foot or leg is 2 degrees off from where it wants to be, I get a huge stabbing pain when I go to move. Thus my waking up being so awful.
A lot of this is new the last few months, but a lot is just amplified. But obviously, the extreme loss of mobility is new.
My sleep was interrupted last night, and we had some rain around. I was less alert today. I fought to stay conscious a few times, but no full-blown brainstem aura. I had an episode around 1:00am where I was very bloated with heartburn and heart rate at 100, and I was having trouble with alertness. Felt myself slipping away a few times. But I managed to get up and cook my quinoa. The food drive remains a strong motivator for movement and activity.
And it takes a lot of motivation, because getting around is almost impossible. I'm putting at least 40% of my weight on the walker, I would guess, but then I'm still using my left hand and my right forearm on the grips. I can take maybe 2 short steps without it. But not always. Sometimes none. Also, I get stuck pretty often when standing or moving around. G has to help me when I get frozen in place. Reaching the floor is near impossible, and that's one way I get stuck. My knees don't get close to straight. Not when standing or at rest. Not if I press on them through the pain. They don't straighten. I'd like to document or measure the angle, but it's hard to take the photo.
My plaques bother me sometimes, but it's still an irritation more than anything. Except the plaque right on my nipple. I have extremely sensitive nipples (haven't been braless in a decade due to chafing). So that one is more irritable. Most of the time, they feel harmless enough, so I'm not real tempted to treat them with salicylic acid (standard treatment). I have extremely thin skin, so even my plaques feel pretty thin. Just a bit scaly.
May 13 Today didn't go as hoped. My fever was definitely lower. The highest I saw was 99.6. But I think that's the end of the positives. My sleep was interrupted, again. And it is not advisable for me to try to go back to sleep without emptying my bladder, which is a huge, painful ordeal. My bladder gives me so much trouble, made worse by my extremely slow movement. I swear, I have so much output these days. My day and my meals ran quite late. And then around 8pm, I dreadfully started another brainstem aura. It went on until around 10:15. I hate it. The last hour, I was aware but paralyzed with all the horrible sensations.
So after that bs, i finally was able to get dinner. I didn't do any food experiment. I didn't even get all my food in. And all the eating was so late, I don't know when I'll be able to sleep tonight. I can't sleep until I'm hungry. No digesting. But I sure am exhausted tonight. I think there's rain tomorrow. Today was gray. My body's just not happy with spring, although air quality is so rarely affecting me. That's the wonderful thing about this weather. Gotta take the bad with the good. The neuro episodes and ongoing symptoms are the bad. I was relieved to have a milder symptom day this week, but we seem to be back to the usual. HR was 98 earlier, 89 tonight. Cough was moderate, I'd say, nothing extreme.
My left elbow area is starting to hurt more. I believe it stems from a hard jolt I took where my left elbow suddenly had to support all my weight. I obviously rely a lot on any part of the body that's not my usual pain. So I rely a lot on my arms for shifting and sitting up in bed as well as standing from sitting and using my walker. Although it only hurts during particular movements that aren't totally predictable to me yet. I'm running out of usable body parts. I haven't even mentioned it to anyone because there's too many, and it's not yet interfering much with my life.
May 14 Today was an interesting one, I guess. Sleep was interrupted by bladder again. I really, really miss sleeping through the night, but I'm glad I'm not peeing in bed. We got to visit with Mom for Mother's Day, and it was lovely. Then, Gustavo stayed in with me, and we put on a movie ("Air"). It was fun! But about halfway through the movie, I was getting really sensitized and startled by sound. The dreaded beginning of the aura. But I decided to fight it. It seems crazy, but an aura doesn't start while I'm eating. So I sat up and started eating my biscuits early and in slow motion. I made them last the rest of the movie, and I made it through. I still felt the attack was coming, but basically, I was able to postpone it. It still came, of course. But I figured that it's possible to postpone, but impossible to stop once it starts. Once I'm starting to lose consciousness, nothing can accelerate that horrific process. All you can do is ease it by keeping dark and quiet. But nothing brings me out of it. So today, I was able to delay it a bit. Went through the horrors when I had nothing else to do, when I was alone. I don't know if it made it any worse than it would have been. There was certainly more build-up. My heart pounded a lot today, and my digestion was "paused", so I knew it was coming. As always, I'm left with the pain phase of the migraine. Still grateful it's not as bad as it once was, although I hate when it settles in the jaw or the ear.
Fever is only 99.7 and cough is not bad.
We're at the top of a massive pressure drop through the next 2 days. I expect that to feel rough. Both on my pain/mobility and my neuro state. One more day down. Let's just get another week over with. I know this is a bad mentality, but it's how it feels.
May 15 Fever topped at 99.3. HR 92 during day and 82 at bedtime. The brainstem aura was milder. No total loss of consciousness, but I was in the aura state with usual symptoms around 7:00-8:30. Nausea, tingling brain, tinnitus and getting startled, heart pounding, extreme heaviness, head feels like it's imploding, aches traveling throughout my body, face feels like a mask I can't move. As I've said, despite not being able to move, this is not a restful state by any means. It is grueling, and time slows to a crawl.
And the migraine settled over my temples, but also in my ears. It hurts to yawn. Ate my meals. Food prep. Showered. Unbelievable still how badly I move around. I noticed that after 4+ months of avoiding using my right hand for basically anything and keeping it in a brace, it is ever so slowly healing, but the meat is gone from my hand. Shriveled away as if it had been in an actual cast, but for longer. But pain is still so bad when I try to hold anything, grip anything etc, that I just have to wait it out. I guess that's my mentality for the whole damn thing. Wait it out. Wait for the whole flare to finish (not that I'll know when that is), and then hope that some things can be rebuilt. Muscle would build back pretty easily just from being able to do activities of daily living. I would be grateful if my computer getting unplugged or dropping the soap in the shower aren't disastrous. I would be grateful to be able to hold things with my right hand, wash my hair with my right hand...so many things.
Good news of the day is a food trial off to a good start. In case I have to replace my oat biscuits, mom and I came up with a recipe for sorghum biscuits with just sorghum flour and oil and salt and baking soda and water. They taste bitter but okay. I could get used to it. I ate about a fifth of a biscuit today, and so far, so good. No notable reaction. This may have been a very intuitive solution, since it's all a guessing game. I don't think I'll have to replace the oat biscuits immediately, but options are beyond important. There is probably even value in incorporating them to some extent to help reduce the risk of sensitizing to my safe, staple food. I mean, I am reacting, without a doubt, to the oat biscuits, at least with the coughing. But it's a question of manageability and risk of progression. I'm glad to have an alternative to experiment with.
May 16 A big pressure changing day (drop and climb). Plus, it was 80 degrees for a while, so bedroom confinement. I am grateful there are a few more sub-70 days, but dread cannot begin to explain what I feel for the oncoming summer. Today was surprisingly a normal terrible day. Pain and mobility were the usual nightmare. HR was 100 several times that I checked. Temp was mostly 99.1 with a spike to 99.6. No loss of consciousness today, although I was stuporous at times. I had trouble keeping my eyes open during a chat group, but I managed it.
My knees are so cranky. The slightest wrong angle causes such intense pain. Going from standing to sitting causes more intense pain. Standing up and walking after sitting is hell. Flank pain and thoracic pain and jaw pain and feet pain and elbow pain and the right hand. All the horrors of daily life. I'm tired and scared, but luckily too tired and too involved in the present to think much into the future at all. That's why I journal about one day at a time. All I can handle is thinking about one day at a time. The challenges of one day are already more than I can handle. I am maxed out.
I was wondering why the sorghum biscuits were so bitter, and sadly learned that sorghum is high in tannins. Being a major migraine trigger due to causing a spike in serotonin, I'm pretty sure it shouldn't become a staple food for me. Especially because my recipe is 100% sorghum flour, when most gluten free recipes are at most 1/4 sorghum flour. I'm not sure if there's something else I can think of to try.
May 17 Survived another day. Sleep was interrupted by intense right flank pain that was relieved when I peed. Certainly seems like my kidney is pissed.
I'm still frustrated by the thoracic spine pain. I did have evidence of arthritis in that area in a scan at least 17 years ago. But whatever I have going on now is so much worse. I can't take a deep breath ever.
HR was 92 earlier, 85 tonight. Fever just 99.6 tonight. Cough was mild today. I had a mild brainstem aura from 10:00-10:30 without full loss of consciousness...I think. It was close. Hard to tell for sure. But it was brief.
Even with my hand kind of improving, I am so frustrated that I still can't zip a zipper or tie up my hair or any two-handed activity or anything my left hand can't do or reach. My left hand is still doing everything. That's a lot of pressure on my left hand/arm.
My mobility is the same: miserable. I still can't transport my laptop at all. It stays wherever someone leaves it for me. So helpless. It's pathetic. When confined to the bedroom, I am not able to get my tray table and laptop onto the bed. I don't know how, but I hope it can improve. Hopefully with my right hand healing. It's been over 4 months now since the first hand "injury," the moment in which I yanked it wrong, and it devolved after that. Anyway, since then, I've not been able to even grip anything with my right hand. Imagine if you had a cast on your hand for 4 months. The muscle is all worn away. Atrophied. Of course. I can't do anything that takes muscle. I've just started being able to hold my phone with my right hand for about one second. Not more, and never the iPad mini. I can't even double press the home button on my iPad. If there is healing, it is shockingly slower than you could imagine. This is not just weakness, but still intense shocks of pain.
May 19 I slept shorter than I'd like. Maybe 6.5 hours. A pleasantly cool day. More living room freedom. I got a visit from Mom and Lexie. Then I had some struggles with consciousness for a bit around 4:30. Made it to class at 6. More brainstem aura around 9-10:30. I did lose consciousness for a bit. I struggled with neuro symptoms a lot. Heart rate was 100 all day and still is. Certainly struggling through. I believe I will lose consciousness once more based on symptoms. It's only 1:00am, after all. Plenty of time to pass out. And my ears are ringing loudly, and my heart pounding hard, so I know it's coming back.
My mobility was worse today. Disappointing again for my "flare is wearing off" story arc I like to cling to. My knees had more fluid than the last few days when I put on my knee braces. And then, I repeatedly got stuck trying to get up from the couch with my rails. If I could use both hands, it would be different. I really do get stuck in some really awkward positions where I don't know how to move without causing screaming pain or falling down (causing screaming pain...and more being stuck). And sometimes, I feel more actually physically stuck. Today was both, I think. I also just had more movements that caused screaming pain today than I have been having.
Jaw pain back tonight. There's some rain around, so maybe that's why.
My left elbow pain is getting worse. Only hurts in specific positions, usually when the arm is bent past 90 degrees. And it's only been really painful a few times. Before that, just twinges. But honestly, this cannot happen. It's not like my knee pain. No pressure in the joint. More like my hand pain, but I can only hope less limiting. I truly rely on my left arm for so much, and I cannot do basically anything without it. If only my right hand would heal faster, maybe I could take the pressure off the left arm. God, this is impossible. Make it stop.
Temp is only 99.1 here at 1:00. 99.4 at 2:00. 99.7 at 4:00.
Starting Sunday, it's basically summer weather. I will deeply miss my recliner and my freedom and my time in the living room with G. Life will get so much sadder and harder. And oh the pain. My body cannot handle sitting in there all day. Plus, the heat and lack of fresh air. Oh, summer. How I hate you. The will to go on gets even weaker.
May 20 A bad day. My sleep was broken up for no good reason. When I did get up, I was feeling rough. So achy and nauseated and fuzzy and irritable. I was not pleasant with my kind visitors (Mom and Andy). Starting around 7:00, I had the full brainstem aura experience with loss of consciousness and then prolonged paralysis once I gained awareness. It honestly was my whole day.
I never really got company tonight, but I would have been bad company anyway. I was so irritable. I really just wanted to exist in a floating sensory deprivation tank and not have to move or sense anything. Movement was hard. I was clumsy today, so I had a few rough moments. The worst was when I was brushing my teeth. Hard to explain, but I leaned on my left forearm to lift myself to spit, with some weight on my braced right paw (still not a hand), and I slipped and jolted a lot of things, mostly my left elbow (which now hurts worse) and my delicately healing right hand. I also bumped my chin on the counter when I slipped, giving my brain a real jolt. I screamed.
I just had a lot of trouble containing my screams of pain today. I do push through and contain myself a lot of the time. Maybe the sensory overload just reduced my tolerance to nothing.
Heart rate has been 90-95 today. Temp got up to 100 around 2. My weight is down to 89. My head hurts worse after the aura, like always. The stuporous state has been sustaining through the night to varying degrees. No clarity today. Pain in the jaw and ear too.
I'm trying to eat more hemp seeds and still experimenting with sorghum biscuits.
Trials I would like to get around to soon:
Histamine-reducing probiotic with no fillers I've been wanting to try
DGL for heartburn. I'd have to drink the pure licorice powder (ick)
PEA for inflammation
It would be really great to know my reaction to all of these things, if only I didn't have to live through the trials.
I'd love to add more foods, but I have no way of actually taking in more than I already do.
I've been trying an odd-looking exercise I invented to try to re-strengthen my stabilizing spinal muscles to reduce back pain. I just have to get myself to do it, because like everything, it hurts my knees. I'm so ready to be done. And I think all of my loved ones could use a break from me. I guess they will get a break to some extent when my bedroom confinement begins. How can they keep hearing me scream in pain when they care so much? I hate this. Honestly, make it stop.
If I could speak to my younger self, it would be the opposite of that, "It gets better," advice. It would be to stop imagining some elusive and impossible change that will improve your life, make it easier. Nothing like that exists. All of your false hopes will always be continually dashed. Don't put your hope in the next thing being the thing that makes it better. Maybe I wouldn't tell the painful truth that whatever hell you're living in, there are always worse ones ahead. This paragraph inspired by someone posting this quote "Just remember, 5 years ago, you dreamed about being where you are now." Nothing against anyone who shares this or likes it. But what a freaking assumption! Why on earth do we assume that things go as we hope they will, or that if they didn't go as we'd hoped, ultimately, something better happened?
And while I'm ranting, why do some people love to give unsolicited advice to someone with permanent, debilitating, progressive illnesses? I think it's about the illusion of control. People love to believe, and it feels great to believe when you are well, that you get to keep being healthy if you make the right choices. So then they can assume that if they got sick, they could do something to make it better. So if you're still sick, you must be doing something wrong or not doing enough. The people living through hell are doing everything in their power to not live in such a hell. It's just that that power can wear away to just about nothing. Believe it or not, there is not help for everyone.
May 22 Good news, bad news. Mostly no news because the days are mostly pretty similar. The good news is that my weird little exercise seems to be helping my spinal pain a bit. After months, my body has actually allowed itself to sneeze twice, because the pain on deep inhalation is less intense. I'm a genius. Now I've just got to keep doing this consistently to hopefully keep the pain a bit lower. I experienced this same miracle in physical therapy oh so many years ago for this same pain. Essentially, one exercise was the key to minimizing this thoracic pain. We'll see if it maintains.
The bad news is about that other back pain. That flank pain. I can very specifically feel where my kidneys are. I often wake up from the pain, and it decreases after I pee. My urination is also frequent and urgent these days. Plus my newly swollen ankles. Other signs of kidney problems I
am less likely to be able to distinguish: weakness, tiring easily, morning nausea. I am getting bouts of intense exhaustion that are NOT associated with my brainstem aura symptoms. Just plain old exhaustion. I don't know if my kidneys are acting up from infection, mast cell madness, or some undiagnosed autoimmune bs. But it's honestly just one more thing going wrong in my very broken body. Reiterating that lost hope of ever being able to solve the problem of my body. Sure: treat your mast cells, treat infection, suppress your whacked out immune system. Yeah right. I can't even get in the car. I can't be near people. I can barely endure moving a few steps. I don't do new
treatments because they are experimental horror shows in my body that I have lived through way more times than I can count.
I don't even know how to begin to explain to someone anymore what all is wrong with me and why I won't see doctors anymore. My life as a "complex" patient began around 14 with my breathing difficulties that have since been recognized as anaphylaxis. I stayed in active disease treatment, seeking new diagnoses and explanations and medicines and surgeries for over two decades. Literally my college years, my 20s, and the first half of my 30s. I spent those years under the care of more specialists than I could possibly ever remember. I have more traumatic experiences than I can recount as well. I have been destroyed. I will only let my body destroy itself from here on out. No external forces welcome. Actually, my full rejection of the medical industry began around 2018 or 2019, although in large part in 2016- my last hospitalization. My body said, "No more." I agreed. I understand this means I may not have much of a future. I'll keep plugging along until I can't. And I need to arrange contingency plans for that time.
Anyway, today's stats are similar: HR around 100 all day. I am so tired of that lack of restfulness. Temp 99.9 (although my face feels hotter--maybe the warmer temps make it feel worse, even though we're not that warm tonight)
My knee pain from simple weight-bearing is continually worse, to an impossible degree. The constant progression is untenable and barely livable. There is no end to this torture. To a much lesser extent, my hips are also getting worse. I don't believe the right one can straighten fully anymore. It feels like it's being obstructed by one of those same joint bubbles, but it doesn't pop.
I was fortunate today that I was able to be in the living room with ventilation most of the day.
Oh! I'm also proud that I managed an overnight with my husband away. He helped me prep a lot, like he helps with everything, but I did it. I wasn't sure I'd be able to manage that, and it was hard! But every day is hard. I sure prefer company, but it's good to know it's possible.
I'm dreading the apartment inspector coming and invading my space tomorrow, accompanied by the fear that he could plausibly force us to get some kind of work done that I couldn't tolerate. Fortunately, there's not usually an issue.
A fun thing in my life has been discovering Libby and audiobooks through the library. I've listened to three in the last few weeks. Despite my extensive podcast resources, it's nice to have an addition, especially since my eyes don't love to read much these days. (So much for all that eye doctor time.) And somehow, my inattentive brain doesn't have much trouble following. I tend to turn down the speed a bit, and yes, I jump back frequently, but I follow the stories when I listen at the right time of day.
May 23 Somehow got another day of freedom. Decent fresh air outside for much of the day, allowing me to be in the living room. Tomorrow is >80, so unlikely to repeat this luck, since the scent will be stronger to overcome. Then, starting on Sunday, all 80+ degree days are forecasted. The dreaded summer.
We missed the apartment inspector. It was really dumb. We were sitting there totally prepared with the place airing out to blow away any fumes he brought in. Now it's rescheduled for another day.
The day was pretty normal/terrible, although I'll begrudgingly admit it was better than average. I first got aura symptoms at 8:00-ish, but only early stage. The full loss of consciousness didn't happen until 1-2am. It was totally horrible, as always, and followed by prolonged paralysis. Yet again, I could postpone it (with difficulty) by staying a bit active and mostly by eating, but after eating, it will still hit me. Today, this meant that my shower was later than I'd planned, and my hair will be too wet to sleep on for a while. (It's 4 now.)
My heart rate has been 90-100 today. Nighttime temp only 99.4. It could still go up, since it goes down when I'm passed out. (Yep, 99.9 at 4:45.) I've barely coughed today, so that's interesting.
Walking is terrible. Showering feels insanely dangerous and like a weekly mountain climb. It also reveals what's changed since the last shower. I still had to do most things with my left hand. But my left elbow is getting worse, most noticeable during attempted shampooing.
I also caught a glimpse of just how atrophied my right hand is. It's disheartening and frustrating that it's been soooo long since I've been able to use my right hand that it's basically dying. I know it sounds crazy, but sometimes I wonder if it's broken. Weak bones and a stress fracture that can't heal. It wouldn't be my first. Still can't hold the iPad mini with my right hand or double press the home button. I can single press the home button with my right middle finger. I can't tie my hair back at all, which is annoying with my itchy neck. I reminisce about playing piano and my right hand being so free and yet finely controlled. No space for reminiscing around here. That leads nowhere good.
My plaques and rough, itchy patches are certainly annoying. There's been a very slow spread around my body, although the main plaques are on my neck right now. But some rough patches are itchier than my neck at times.
I'm going to try eating less salt to give my kidneys a break. Sucks because I'm hypotensive, and it's my only seasoning. But as always, my body hates itself.
Can I be done now? Have I done my time yet? Can we just call it already? This hurts. This hurts more than I could ever have imagined and more than I can describe. If I mention a pain, it's because it's horrific. I'm not leaning on a walker for a little support. I'm trying to reduce the weight on my knees by at least half so I don't just scream constantly. I'm not unable to use my right hand because it aches a little. The tiniest wrong move causes screaming pain. And most moves are wrong. I've had a million lesser pains before. I still have them, and don't even mention them. I don't believe morphine would make a dent (although I'd be willing to try if my mast cells weren't insane). This needs to be winding up soon. The absolute desperate avoidance of these many pains is enough to make me shrivel away. And it just keeps going. I need a stop. I need an out.
May 23 Today, I'm just reporting that the migraine aura has been threatening for hours. Starting around 11:30. It's 3:45 now. What a time this would be to pass out. My heart has been pounding hard. Intense nausea. Tinnitus. Amplified hearing. Startling at sounds. Despite feeling feverish, my temperature dropped like it does when I pass out instead of spiking like it tends to at this hour. Feeling heavier and heavier. Heaviness in my pounding chest. What an awful time it would be to pass out. It would really mess up my bedtime, which is falling asleep in the chair around 5:15 and then transferring to bed with help around 6:00. Maybe not ideal, but it's the routine for now. Well, I've neck braced up, bracing for impact. Or maybe I'll just stay with this early stage aura straight up until bed. But I couldn't possibly sleep through this. As always, this version of losing consciousness is the opposite of rest. If it's going to happen, it would really be better to get it over with.
May 24 Wow, it's been hell. I did finally pass out around 4:30am, when I silenced everything. I was out until 5:15, when a sound startled me into awareness, but I stayed paralyzed until 6:00, and probably went in and out a few more times. I hadn't taken my sleep meds or done my final bedtime preparations, because I was in that hell for so long.
So then, I made it to bed at 6:30 and couldn't sleep until 7:00. Then, I had so much trouble with knee and hip pain in bed. Repeated and prolonged awakenings. I finally was able to get out of bed around 3:30 in the afternoon. My normal is 2:00ish. So, my whole day ran late. There wasn't time to eat all my food. I feel like I've been in battle and fearful for the next time.
It's 3:00 now. Will it happen again tonight? Can I do anything to change it up from last night's torture? I can stay in silence, which I mostly am. I did some cooking. Still need to clean up. My head pressure is high and tinnitus going. But the heart pounding has been less intense today.
My swollen knees are pretty much at maximum swell today. Getting around is so extremely difficult.
But, I tried drastically reducing the salt in my diet, and the change to my kidney function has been incredible. I'm not peeing excessively. Less frequency and less volume. Still some urgency at certain points (I think just because I move so slowly.) Less flank pain too. Almost none upon waking up, which is a huge change. Years ago, I had to discontinue my salt tablets due to kidney pain. So I guess this is a progression. My food is much less appealing. I am barely interested in eating. Some foods just taste pretty bad. I'm sure I'll get used to no salt/no seasoning. But it sucks. But my kidneys seem happier. I guess they're just getting shittier, like everything else. It's not great for my hypotension though, which loves salt.
My little rash spots are spreading more around my torso; actually, some rash, some plaques I don't know how bad, since I can't see my back and I can't reach well with my little paw, but I feel itch and rough patches.
Now it's 4:00, and sounds are seeming amplified. I cannot do a redo of last night.
May 25 The apartment inspection was today. The guy, of course, smelled of cologne, despite repeated requests that he come fragrance free. I was 0% surprised. It was 5 minutes, but it still ruined my day. I had to manage my way out to the patio and sit in a patio chair for 45 minutes while we aired out. My hips and sacrum were in so much pain, I could only step inches at a time back inside after sitting so uncomfortably. My recliner is extremely tailored to my body. Any other seating is torture. Getting outside also involves a small step, which is nearly impossible in both directions. My right hip especially has been killing me all day. Then, of course, during airing out, tobacco smoke got blown in. Thankfully, it was mostly in the bedroom, and the air purifier in there (EL Foust) was easily up for the job. I've been in pain all day. I suppose it's hard to say it's worse, except for my right hip.
One thing over with.
CVS is screwing with my prescription dosage and frequency again. I can't believe how many times we have to go through this. It feels endless. And once they screw it up, I'm shorted until they say I'm due for a refill, because laws prevent early refill. But it's only "early" in the sense that they messed up again. Thankfully, this is a medicine that I can and do ration, so I don't come close to running out. But I still have to stay on top of them and often arrange with my doctor to correct the same exact mistake again. I've never seen such incompetence in a pharmacy in my life, and I have some experience.
My bladder hasn't been as impressive today. I peed plenty and with decent volume. But! Flank pain is still mostly gone, so I will continue avoiding salt for now.
I'm still struggling with neuro symptoms at various points in the day, and still coping with early aura frequently, just waiting for the next loss of consciousness. I was dropping away a bit today between 10:00 and 10:30, but not enough to convince me that it won't happen again. Only if I have a very well-defined, decisive loss of consciousness with a definite ending do I feel like I'm off the hook for the rest of that day. I'm still really hoping it doesn't happen right before bed again. That really messed me up.
Heart has been pounding a lot of the time, but a bit slower today. Around 85. Temperature is only 99.1, so that's pretty great.
I'm starting to hate being in bed. It's just become so much less restful. I don't sleep through. Usually several painful wake-ups. Painful bathroom trips. And then painfully attempting to find a way to rest my legs that doesn't cause more pain. This is becoming less and less possible. 4 full pillows of various weights and densities all just for under my legs. Plus two different head pillows and one between the leg pillow. Plus some towels to try to support my knee while I lie on my side, although I don't sleep on my side. Then whenever I wake up, there's the instant pain and the sweat and the pounding heart. And then trying to readjust myself in bed is so difficult and painful. It's practically like post-surgical pain, when you wake up and the drugs have worn off, so you feel all the damage at full-force. Plus, I feel like I weigh a ton. If I prop up on my elbows, my left elbow hurts. Right hand is still out of commission. I think I am sweating less with the lowered fever, but we'll see if it lasts.
I love actually sleeping though. Being asleep is my favorite.
The temperature changes have been hard, I think driving the neuro episodes. But getting warmer will be worse, and I know it's coming. God summer is so long. And time is so slow.
May 26 Man, I'm exhausted. G has not been available to help me today or this evening, and it's been so hard, proving just how much all those little things add up.
My fever was back to 100 during the day, higher than it's been during the day in quite a while. Although it's only 99.2 tonight. I feel like my body has lost its circadian rhythm from all of these auras robbing me of time. It's like constant jet lag.
My left elbow has been getting progressively more painful, making every little thing a little harder. I can no longer hold a phone to my face due to my right hand and my left elbow.
The big issue though is my jaw. I've complained of jaw problems for a long time. Many years ago, I stopped eating crunchy food for this reason. But there's a tricky differentiation between trigeminal nerve pain and TMJ pain and migraines that show up in your back teeth and ear and jaw. Generally, I just ignore it, because migraine pain tends to move around. But yesterday and today, I have a creaking sound in my right jaw joint with every bite. This feels like a bad sign. Both the bubbles in my knees and the creaking in the jaw are considered crepitus, which if painful, is a sign of the inflammatory arthritis.
I've been having bite troubles for a while. I have retainers that are 12 years old that I still wear. They help keep my jaw from going crazy, but I haven't achieved molar contact in a while, and that puts stress on the joints. But they were still my best tool. And now, today, I removed my retainer, and it cracked. I'm afraid this will be my next big hurdle. Because of course, it's doubtful that the office that made it could remake it without me coming into the office for multiple appointments, and taking off a mask, which I would never do, and taking a mold of my mouth, which I cannot imagine going well. It really hurts to open my jaw at all. I mean, there are good reasons saying that I need new retainers to better align my teeth, make the molars meet to form a proper bite surface, and protect the jaw from further damage. But that is rather impossible, now isn't it? Just like every other inaccessible treatment. Ugh. I hate this. I just wanted to keep wearing the same retainers forever. But that is not an option. I don't know when I'll deal with all of this or how. I guess it depends on how urgent the jaw pain/dysfunction becomes. I've been putting up with this bs forever without any help. Only the creaking jaw is new, although I don't think it's the first time. The only workaround I know for this is pureeing everything. Even my biscuits take chewing. Ugh, why. Why so many problems I can't solve? Because this broken body needs medical care in so many ways, which is not an option. Let's just stop the misery already, please.
Anyway, my heart rate is 95. I had early aura symptoms several times today, but only a few tiny lapses in consciousness. So far. It can always happen any time, of course. I hope this day can end peacefully, besides the inevitable pain of trying to walk after having rested for a while when I prepare for bed. It's still one of the worst times.
May 28 My jaw only creaked a little today. Hopefully, it will stay that way. I need my jaw joint.
For me, this was a relatively good day. Relative to my new normal.
I've been dealing with abdominal swelling, which has not been my norm for a while. Also, my bladder's acting up, causing a sense of urgency when there isn't much volume to empty. Really frustrating, but I'm still reassured that I don't seem to be overproducing urine right now. Still on the low salt diet. My kidney areas feel pretty good. But my bladder is really irritated and getting painful tonight.
My left elbow continues to be joining in the fun of activity-limiting joint pain. I think maybe it started when I slipped and landed with my weight mostly on my left elbow while brushing my teeth. It was a shocking pain. That would be encouraging, since it suggests the possibility of healing. It seems possible since it's not inside the joint itself. That would make it very similar to my right hand pain. That pain is in fact improving, but still so slowly. I will not be forcing it anytime soon. The pain comes back so easily. But it seems to be decreasing still. I just tried flushing the toilet with the right hand...any finger or all...still a no-go due to such sharp pain. So not close to rebuilding yet, but going in the right direction. I can accidently bump my hand without screaming. I can briefly (1-2 seconds) hold my cell phone. Not much more.
Unlike my knees, which are holding steady, I think. I feel like they haven't been changing much. Same level of limitation. I hate those bubbles as much as ever. I know that it is very normal to have bubbles in your joints, and they usually pop painlessly. But these are not those bubbles. These are evil bubbles related to joint swelling and degeneration, from what I understand, and they are agony.
My shoulders are still randomly painful. I used to think of this as subluxation from EDS, but now I think it could be bubbles popping in the joint. Could be both.
I'm still doing my little exercise for back stability, and still benefitting from that with decreased thoracic pain, although my body still often aborts a sneeze when I feel the sharp pain on inhalation.
My neuro state is pathetically better than average. I slept well (nice and sweaty--I only sweat a lot with deep sleep). I had several episodes of "early aura" signs, but I don't think I crossed over into loss of consciousness (yet). It's 2:30, and I'm feeling stuporous with a pounding heart and tinnitus, so it's certainly possible.
Hoping for another sweaty night. Although really, that all is probably about to change with the shift to warm weather again. Everything will change. I still need to figure out how to eat a meal in the bedroom. I don't even lift the computer or tray onto the bed myself anymore, much less get myself in there with a plate of food balanced on top. My mattress is very squishy, as I need it to be, but it is not really made for sitting up and eating.
I have that weird migraine pain in the ear/throat today, which feels worst when I yawn.
Heart rate has been 95. So tiring. Temp lower again today. I think 99.4. I'm weighing in at 89. God, I need more muscle. This tiny body is so hard to move.
I hope my bladder calms down soon. Nerves must be involved, because I literally feel buzzing.
May 28 Another sweaty night last night. I slept through and deeply, despite the usual pain of finding a tolerable position. Today was more brainstem aura. My heart was pounding at 95 around 6:45. I was enjoying a movie with G, and frustratingly developed all symptoms and lost consciousness for at least the middle half hour of the movie. And then when I gained awareness, I stayed paralyzed for until around 8:40. If I had been in silence, maybe I would have stayed out instead of regaining awareness, and maybe that would have felt more definitive, but who knows? By definitive, I mean that the symptoms came creeping back around 12:30. I hadn't done my time for the day. I had to push through to get my cooking done. The quinoa still has some time left in the microwave. Then, I guess I'd be free to pass out again if needed. But I can't really control when it starts up, so it could easily be at 4:30 again, ruining my whole tomorrow too. Hopefully not.
The weather will be warm this week. I don't know how bad it will get for me. Hopefully, I'll have some freedom tomorrow so I can make the most of having G at home. But would staying conscious too be asking too much?
My abdomen is swelling a lot again today. I hope this is a short phase.
The migraine has been similar: over my temples and in my ear/jaw. I have felt a lot of exhaustion and intense pain today, but was so very happy for the company.
I have a theory about my right hand and left elbow. Both were moments of injury, however small they seemed. I am supposing that my bone density is very low again, and perhaps these are hairline/stress fractures. I got a very unusual one at age 15 in the center of my heel bone. They didn't see it at first, but when they did, they said they wouldn't have even looked there, because it was such an unusual injury. My geneticist later took quite an interest in this story. Telling, I guess. If only they had done a bone density test then, perhaps I would have understood more about my condition sooner and been better understood. But probably not. Most doctors just don't give a ****. And they're so often clueless. Almost never helpful. Can you sense the love? Anyway, my elbow especially feels like the same scenario. It's hard to describe the injury, but suffice it to say that my elbows and forearms have been doing a lot, including catching me when I so often slip and nearly fall. So was the case with my left elbow, when it took all my weight in a sudden jolt. Since then, the pain has been worsening, reminiscent of my last stress fracture. The only treatment? Totally stop putting stress on the bone and don't do things that hurt. And based on my hand, healing is going sloooooowly in my body these days. Especially because I'm not casted and able to totally avoid using literally any part of my body. The main things that trigger the pain are: putting weight on my left elbow, bending to put an ear plug in my left ear, and bending to try to put on my collar with a bent arm. Bent beyond 90 is when it hurts most. So at this time my barely recovering right hand is starting to take over these tasks. Wrong move for healing, but I literally have no choice. Also, I can't tie my hair back, but even reaching to try to pull my hair out from the top of my shirt is too painful for my left arm. It's just too bent. I hate my hair in there since that's where I'm covered in irritated plaques. Also, reaching back to scratch my plaque-y shoulder blade is impossible. I can't bend the arm that far.
Thankfully, I can still use my left arm for hoisting purposes if done carefully. And I can still use my left hand on the walker handle taking most of the work and weight, along with my right forearm taking some.
This body is so clearly disintegrating, and yet I have to keep getting through life in it.
May 30 I stayed conscious today, although stuporous at times. Heart pounded at many times. GI trouble causing problems with evacuation. 'Nough said.
The last two days, my elbow pain is noticeably worse. Even putting my weight on it in bed hurts too much. It's not screaming pain yet, but it is very limiting. And I really rely on my left elbow to move around in bed. I'm not moving well. Getting in and out of bed is so hard. I am not sure how to accommodate this pain. My right hand is improving, but still has so far to go to come close to taking over for my left hand. And rebuilding from that atrophy can't quite start yet, although I'm sure it will happen naturally with increased use. But the pain is still preventing rebuilding.
For my shower last night, I tried out a new shampoo brush to lather my hair with weak hands. It worked amazingly well. My hair hasn't been this clean in months. But my left hand couldn't do it due to the elbow bend. Fortunately my right hand just managed it.
I was coughing tonight, but not much fever today. 99.3 earlier and 98.8 tonight! Overall, my cough has been much less problematic these last couple weeks. Heart rate was 97 earlier and a constant 90 tonight.
My jaw is still wonky and my vision seems to be in flux.
My plaques suck. Itchy today. Especially the one on the nipple. It's not a constant, frantic, body-wide itch like when I get bit, and my histamine level shoots up. But it is an annoying, intermittent itch. And the patch on my nipple seems to be peaking right now. Yikes!
I'm still following the very low salt diet, and my kidneys seem to be so much happier. Flank pain has decreased a lot, and my urinary output is a lot less excessive. I even get to sleep through the night sometimes! And I believe my ankle swelling has decreased as well. Kind of amazing after requiring a high salt diet for decades.
I didn't share the miraculous part, which is that the last week or so, even when the temperature got higher, nothing really smells. So I've been able to stay in the living room with the AC. I can't explain it, and I won't count on it, but I'm very grateful for it.
Ankle swelling
Muscle atrophy
That's as far as my legs straighten.
I couldn't show the whole plaque-y area without revealing too much, but this one shows a lot of it. I have other plaques strewn across my torso as well. And the fading ones on my thighs.
