I'm sharing tonight, because I never know when my next coherent night will be. And I'm lonely. But my hands hurt a lot, so I can't do much editing of my phone notes.
May 31 I thought I was done reporting on May last night, but then today happened, and it can just go f*** the f*** off. I had fallen asleep in the recliner...pretty common and even somewhat planned so I can have help getting to bed. But I had fallen asleep with my head in some awful position. No collar on. I can barely put a collar on myself right now with my barely functioning arms. But I must have fallen asleep quickly, because I didn't have it on. And my neck was in total spasm. Luckily, G came and quickly massaged it out as best he could. He stills thinks I have my old neck of steel muscles, which I do not. So the massage was way too rough, but still effective. I am not allowed to mess up my neck that way, because it is putting strain on the spine below the fusion. And there will be no further repairs for me. I lived through that brutal disc issue in 2019 with no help and no pain meds, and I need to do whatever it takes to avoid that horrific pain.
Then, I got myself prepared and got in bed, with assistance. But somehow, in bed, I got myself stuck in an excruciating position with my left arm bent too far, unable to get out of it for a while, since I couldn't straighten the arm from that far bent. I called G desperately. He was already in the parking lot, leaving for work, but came running back in to help me, because by then, I had also dropped my kindle to the floor and basically under the bed, plus I was stuck in that position that's hard to describe. He came and helped. I finally, finally fell asleep in bed.
But there's no rest for the weary. I didn't sleep deeply or long or well at all. The warm weather is here, and the bedroom hit 79. Of course, when it's actually hot, my body forgets how to sweat, and I just broil. All those cool nights of sweating and deep sleep...gone. It is well and truly summery, and my sleep quality suffers. So, I woke up, and the day started hard. The pervasive scent was back. The bedroom thankfully sheltered. But I couldn't air out the living room due to the smell of hot, wet asphalt outside.
Mom, thankfully, came over like usual, and I did not bring the joy. Pain was spiking. I was unable to move how I needed. Crying from pain and despair. What a hopeless, joyless situation. But I'm still so grateful she was with me, helping with a million little things and being the best company.
I was fortunately able to tolerate the living room long enough to eat there. I still haven't eaten a main meal in the bedroom since the deterioration. My little air purifiers are still helpful in the living room, giving me a little freedom. They just don't have the power of the Foust. That thing is amazing. I've had some iffy and failed purchases lately (see: upright walker, organic bamboo mattress encasement), but this one pays dividends daily. The best thing it does right now is allow me to let some cool but scented air into the bedroom and then purify it, so I'm not living in a sauna. An amazing tool I would never go without.
So, I went to class, despite the tears and despair and pain. But right after class, it was my GI's turn to act up and add to the misery. This is a TMI warning for digestion:
I had been bloated for a while, so 2 days ago, I took one less magnesium capsule. That's all. That's all I did. 4 instead of 5. And the bloating went away. But yesterday, I had a very difficult BM. It was not firm. I cannot pass firm stool due to an already stretched out rectum. Unfortunately, when there has been one difficult BM, the rectum gets all stretched out and loses its tone. So today, I had a much worse one. I tried walking around first to help it come out more naturally. The urge was there. But it could only come out with manual assistance. This was very painful and devastating. The only other time I had this problem was on opiates, but that was too hard stool. This was simply not able to come out. The peristalsis was trying and failing. I am sore, throbbing actually. And totally unsure what dose of magnesium I should be taking. I clearly will need extremely loose stools for a while. I believe the rectum could recover (not perfectly, but back to some functioning). The magnesium I take today doesn't affect me until tomorrow. It's so, so easy to overdo it. I really hope I got it right and that somehow, it can move along without assistance tomorrow.
I actually learned how to splint and assist with BMs from helping my little Wilma. Some days, she couldn't pass stool unassisted, and I would watch her struggle, and I just intuitively knew exactly what she needed to help it slide right out. A sadly useful skill.
So that was the punctuation of a day for May. I have no hopes that June will be better (everything is progressive), but all I can do is live day by day. So I can hope tomorrow will be better, despite being another warm one.
For tonight, I am just planning on going to bed without assistance, before falling asleep in the recliner and risking my neck.
June 1 Well, not much went as hoped today. I slept terribly. I woke up, sadly, with intense right flank pain after 3 hours of sleep. I went pee, and the pain did ease up. Stupid kidney. I thought I ate very low salt yesterday, but maybe not enough? I ate almost none today. After that, I went back to the warm bedroom. 79 degrees. My body dry as a bone, not sweating at all. No temperature regulation. I have been fortunate enough to be able to get back to sleep after wakening the last few months, an extremely welcome change. But that's gone now. My deep sleep is gone. My ability to get back to sleep gone. I was really enjoying every single moment of actual sleepiness. But the hot body means the brain is awake. I will have to divide my sleep meds and plan on biphasic sleep again. Really sucks. I did it for years, so it's not like it's new to me. But I was enjoying the change. Summer sucks.
Then, GI trouble again. Unfortunately, increasing my magnesium dose to 6 capsules yesterday did not have any apparent effect. Same problem as yesterday. Manual emptying was necessary again. Very weak peristalsis that just can't move anything through. It hurts, and the manual evac is actually a relief, although it is a long process. I was left in a lot of pain. Throbbing and burning. Strangely enough, no fissures, although I am prone to them. I took 7 magnesium today, so all I can do is wait for tomorrow. For now, I have some diaper cream on there. It is so frustrating and devastating to just watch one body part after another fail.
On the subject of failing body parts, my left arm is still getting worse. Harder and harder to do anything bent, although thankfully I can still do many things with the arm closer to straight. Necessary, since my left hand is still my good hand. Right hand is making some progress, but it is so easy to overdo it. I was able to write a few notes in Spanish class today, so that's something.
Along with that, something has started going wrong around my right hip flexor. I already knew that it didn't straighten all the way, that it felt obstructed. Well, now, I can barely lift the right leg. I've been doing little leg lifts all this time, and they've felt pretty even before this. Now, I can still lift the left leg like normal, but the right leg, I basically have to lift it with my hands. In just a couple days, this has developed. It's not atrophy/weakness (yet), because that makes no sense when I've been using my legs equally. But there is a painful, obstructed feeling, and like many movements, the pain is preventing normal mobility. And what honestly feels like something structural. Hell, I don't know. I can only interpret what I'm experiencing. The other limitation this is causing is struggling to reach my right foot with my hands, as I can't seem to bend the hip in very far. This is highly problematic, not just for putting on shoes, but also knee braces and clothes.
Besides that, my cough was a bit worse again today. I think it was when I opened the door to get some air, and the air quality is just awful right now. Full of allergens and still asphalt smell. Very humid. Summer. I've also been feeling more agitated since it got hot, with the poor sleep and constant noise of AC and purifiers.
My fever has been tending lower. I was surprised it was 98.9 soon after waking, when I felt the hottest. Tonight, it's back to 99.5. Heart rate around 90.
My neck and shoulders are still in knots. Oh, how I could use a professional massage. Although getting too loose always gave me problems due to spinal and shoulder instability. But it's great for an acute issue.
My ear has been hurting intermittently, especially when yawning. I will admit I'm not sure where this comes from. I always thought weirdo migraine, but it's not really that, since it's intermittent, and migraines are pretty darn constant. Maybe just immune/inflammatory chaos.
The last two days, I haven't lost consciousness. Not really close. So that's a nice little break. Kind of surprising given the poor sleep, but sometimes symptoms change a bit with the seasons. So we'll see how it is going forward. We've got plenty more days in the 80s. Smelly apartment. As for the smell that's been bothering me since it got hot that smells soapy, G says he can smell it in the lobby, and it smells soapy to him too. Probably just the weekly cleaning, only amplified due to the heat. Surely scented cleaners and air fresheners. It would be so amazing if I could get them to not use all that scented s*** in my building. I know some people have fought those battles. Some have gotten lawyers. Those who devote time and energy and have a lot of medical and legal support sometimes win. I have none of those things. I know I'm a peon.
I have one new skin plaque on my abdomen. I'm pretty sure I'll be a polka-dotted leopard some day. Different spots at different stages of development. Some growing and flared, others starting to fade and soften. The neck is still pretty covered though. The back spots bother me most since I can't reach them.
No break from the heat for several days. I'm so reliant on my single AC unit plus my purifiers, since I can't even ventilate right now. Frustrated that sleep is not much of a break, since I'm sleeping so lightly. I miss it.
June 2 Much the same today, except at around the 48 hour mark past the fragrance use in the lobby, it's not so smelly today. I still spent some time in the bedroom to avoid the chaotic noise of the AC.
Less flank pain today, but sleep was still interrupted. The bedroom was 81 degrees, so it was very hard to get back to sleep. I also had so much pain moving and supporting my legs. Constantly adjusting the pillows, trying to find a position that quiets the pain enough to sleep. But I was also roasting. My biphasic sleep plan kinda worked, although it was more triphasic.
Leg pain and resultant loss of movement is steadily and noticeably progressing. Left arm pain and limitation is also progressing. Right hand is improving, as I've been noting...but barely. I flushed the toilet with my right hand! I held the phone for 3 seconds instead of 1! But I can cause the pain to spike and setback easily if I overdo it, so I'm only using the right hand when my left arm isn't able to manage something. I'm trying to be careful, but it's easy to get a little too cavalier. The left arm problem is hugely limiting. Even worse than my right hand was, because I had one reliable hand/arm. Now, I don't have any. One on the mend and one progressively worse. Putting on my collar is probably when I strain most. I put it on backwards and spin it, but I can't get it on tightly enough. I just can't reach my neck, even the front, with my left arm. I can't touch my left ear with my left arm. Interestingly, I can no longer wear the rigid collar. Can't really explain why. It's easier to get on but doesn't work for my spine anymore.
GI is not normal yet. I took 8 magnesium capsules during the day, and one more late at night. I had a BM, without manual internal help (some external splinting), but it wasn't very impressive. It was still a good sign and a good break from over-stretching so much. I'm taking capsules about as fast as I can make them. The only thing that occurred to me is a dietary change. I've been eating ONE sorghum biscuit a day. I wonder if that was enough to back me up. I'll certainly have to test it. Could be coincidence. But I'll skip it for a few days to find out. I took the extra capsule tonight, because my gut doesn't feel awake much at all. I had G listen for bowel sounds, and there wasn't much.
My cough was SO bad tonight. Lots of uncontrollable, spasmic coughing. It's still ongoing now at 4:30am.
No loss of consciousness again. More alert and talkative tonight.
Jaw hurts worse tonight. Really hard to open my mouth.
Bladder is more irritated with more urgency and excess volume today.
Temp 99.8. HR 92. Not looking forward to the warming bedroom again.
June 3 My sleep ran late since I needed extra sedation. The air has been okay inside today. Soapiness is gone for now (mostly--I still get a whiff here and there.) Moving around in bed is still so painful. And lying in bed, which is so tricky.
I moved up to 10 magnesium capsules today. Five before breakfast and five before lunch. It finally did the trick and did it well. I was able to move very loose stool unaided. This isn't the end though. I've got to attempt to figure out the necessary dosage of magnesium to keep having unaided BMs without going too far. It's all a guessing game. My rectum already feels so much better, but I know it will take time to recover and regain some tone. But I'll have to figure out how to return to somewhat more solid BMs. It's not healthy to keep it so loose, because you clear out your biome and decrease absorption. Just have to get back to a happy medium. For now, I'm grateful for a little relief and concerned about overdoing it.
More spasmic coughing tonight, but less intense. Mostly while I was eating my biscuits. And I did skip the sorghum biscuit today.
No loss of consciousness. Again. Very grateful for this.
Jaw was feeling creaky. My teeth are meeting differently, straining the right side.
I swear, I am moving my body in any way possible and pushing beyond my limits. The pain is so widespread and beyond limiting. It is truly unbelievable the amount of pain I have to push through constantly to complete the most basic activities. It is difficult to see the deterioration right before my eyes. It's really obvious when you live with it. G sees it all. He knows I could move in a certain way just days ago and no longer can. It just keeps happening. My body wearing down and wearing out to nothing. I don't know when there will be nothing left. I don't know how much worse I can take.
TV update: I finished the current season of The Great and started Silo. I also finished XO Kitty. I have many ongoing.
I'm listening to the book Wish You Were Here by Jodi Picoult. The title keeps reminding me of the Incubus song.
June 4 A few updates today. GI is moving quickly. I took 5 magnesium and have had multiple movements, all unaided (a tiny bit of external splinting, but that's normal for me). Still just guesswork for how much to take each day. No sorghum again. There's a chance it was stopping me up. Only further experimentation can say. But for now, I'm looking to normalize. The bloating is gone, but the abdomen is totally inflamed from all this stress. Looks the same. Feels different, softer.
We tried a practice run at getting me outside. We learned that it is nearly impossible. Getting my body out to the sidewalk where the wheelchair is is the problem. Even being carried is excruciating for my knees. I'm sure that's hard to understand, but then you don't have these knees. So I am more trapped than I knew. It's hard to think about. Better not. I'm very sore from the attempts. Just more evidence of progression and walls closing in. With pain and effort, I can sit on my patio if I have a good chair and good air. That's it. But I don't really do that. Just planning hopefully to visit with family from out of town this week outside. So disappointing that I can't get beyond the patio. More than disappointing, obviously.
I finally cleaned our bathroom sink. I couldn't scrub it hard enough to get off all the layers, but it's better. After that, I brushed my teeth while I was up. I was probably up for a half hour. My heart was racing, so I measured it. 170. POTS is back. Surely a combination of deconditioning and not eating salt (and the fever). I've had dysautonomia all this time. Never stopped. But the POTS is back, and it's exhausting. At this point, it feels like my heart rate will just stay elevated now. Of course, this can also be traced back to March 28th, when the fever started, and the heart pounding too. My heart rate is never at a comfortable low rate anymore, in addition to the postural response.
My cough reflex was strong again tonight, but finally, I was very clearly able to pinpoint a major respiratory irritant. Sometimes, you get an undeniable trigger. It was Listerine. It's not the cause. It's not the only irritant. But my reactivity has been building up, and it is so nice to finally have an explanation for one problem. It's not great. I can't imagine putting more limitations on G. (If it's not obvious, I'm not the one who was using the Listerine. I use as few products as possible and as mild as possible.) It was only obvious because, for once, he used Listerine while in the bathroom, but not after a shower. The immediate spasmic coughing was quite clear. And it couldn't be blamed on post-shower air. I have to hide while he showers every single day, and this could be why. Just today, I had to eat over an hour late due to hiding from his shower. This sucks for him. Answers and clarity are great, but more limitations absolutely suck, and make me know for sure que yo no valgo la pena.
I have other frequent cough triggers, depending on the intensity that day and what else set me off that day. Having reflux sets off my cough. But drinking baking soda water seems to make it worse. Bathroom air makes it worse. We leave it closed up with the dehumidifier full time now. Outdoor air usually makes it worse. The AC blowing makes it worse. Eating biscuits makes it worse. It's worse at night. Nasal rinses also seem to irritate the area, when it drips down my throat. But then sometimes I have gone a number of days without coughing much. I do wonder if those are days I've been confined more to the bedroom. Less exposures.
My sleep is still biphasic, and therefore, interrupted and late. Plus, I learned that my head pillow has flattened too much, and my arms went numb in my sleep. I don't know how to keep shopping for suitable pillows when I already own all of them. I wish I could sew and maybe make myself an adjustable pillow. I used to basically have one, but it was made of shredded memory foam, a material I don't use anymore. I had a water pillow, but those get full of mold and eventually leak. My neck also just keeps getting pickier, and my needs change. And...I truly need a different height pillow on my side and on my back. This hasn't been such a problem before. I could just roll around, as long as I wore my soft collar for some stability.
No loss of consciousness again. I like this streak, and I have no control over how long it lasts. But it's marvelous.
I'm up at 5:30am tonight. Not great. My schedule keeps getting pushed later with biphasic sleep (with prolonged time in between sleep phases).
I was feeling a lot of negative emotions today, despair but also irritation and rage. I thought some fresh air would help. I never get a change of scenery. That's not for me to have. The air was scented. It's just not for me, like so many things in this life that are not for me. I bet I will get back to emotional detachment soon.
But a support group member passed away, again. Forced to take his own life when his housing was lost, and his situation became impossible, because he couldn't find any safe place. Housing made him sick in the first place. Mold illness and MCS. Likely MCAS too. He asked for so little in this life and got nothing.
I am mourning and grateful for what I have and resentful for what I don't have and fearful for what else I will lose.
June 5 Well, I'm afraid I pinpointed the cause of the worsening cough (specifically the last few days). It's been so bad since Friday, the day I got a new filter installed in my AireOx purifier. I'm afraid this is quite possibly causing the worsening, mostly due to the timing. But I've also noticed that I don't cough in the bedroom. I need to find out if the filter material changed. Otherwise, it's just that I've never been around it new before, since my mom gave it to me, and it already had a filter in it. This would really suck, because I rely on that purifier. And I chose to change the filter now to cope with the ongoing fragrance exposures as well as other allergens. It was already helping a lot before the filter change. The coughing has been awful though, so I will have to leave it off for a bit, and then potentially look into the filter media. It has absolutely no smell, which actually surprised me, because potassium permanganate tends to actually have a scent. But I didn't imagine that this new, scentless filter could be harming me. It's just, the timing is way too perfect. Thanks to my journaling, I can see that it was exactly Friday later in the day that my cough became reactive. Also, I haven't spent a lot of time in the bedroom, but I don't tend to cough once I've been in there for a bit. There are so many contributing factors, but this is an important one to figure out for sure.
A few hours later, post shower, I've run the AC but not the purifier. So much less coughing. So much less.
Today, I was not careful with my right hand, and I grabbed the iPad with it. I dropped it as soon as the pain spiked, but it's caused a setback for sure. Showering is a careful balance between hands, since the right hand and left arm are both limited. Just typing this on my phone hurts tonight. Such a stupid decision. It's too soon for pushing my hand beyond what's comfortable if I ever want to improve and keep improving.
I had a left arm pain spike today too, causing worsening ongoing pain. It was the same move that got me into trouble. Trying to stand up from the stool while brushing my teeth at the kitchen sink, and leaning my weight on my left elbow/forearm.
It is just so hard, because with my legs unable to do much, the arms inevitably have to take over so much of the work. I have to hoist myself up with my hands and arms. And that extra strain has just been too much. With my osteoporosis and low weight, and sudden overuse of certain parts, I believe stress fractures are a likely explanation. Not my first. Description fits perfectly. Pain avoidance is the only way to heal.
https://my.clevelandclinic.org/health/diseases/15841-stress-fractures
Yeah, I'm my own doctor. I at least have a lot of medical experience with this one body.
Yet again, no loss of consciousness. Potsy? Yes. So much. Heart barely slows down and races when upright, just like the good old days. Post-exertion malaise? Yes. Digestive malaise? Yes. But conscious. It's been a nice streak. So nice. However, as I've noticed before, the more time I spend fully conscious, the more aware I seem to be on a deep level of my situation. My emotions have been negative and dysregulated. I guess I have to accept that it comes with the territory. The more aware you are, the more you can feel how much things suck. Anger, despair, dread, hopelessness, and more anger. I've had some intrusive ruminative thinking as well. Very negative. I won't share. I guess I'm more fun to be around when I'm half dead. I don't want to be around me, but I'm trapped in every way.
The emotional distancing I am forced to do is pretty insane. I have to avoid so much in order to stay detached, music being a big one. I cannot listen to music. But also stories of people struggling with (and especially "overcoming") medical problems. Anything about doctors. But it's honestly so much bigger. I have to avoid nostalgia. People being deeply in love and able to enjoy it. Animal human love. Family togetherness. Thoughts of the future. What the world thinks of us "undesirables,"--anyone unwanted by society really. I couldn't possibly describe the number of emotional "triggers" I try to avoid to protect myself and try to remain pleasant. And when I can't avoid, I try to stay detached. Those emotions are always there. The same ones that used to make me kick and scream from rage and cry for hours and harm myself and so much more. I didn't get over it. All the grief that felt like it would kill me. And all the grief that keeps coming. It's been growing all this time. It's all still there under my carefully-made surface, and sometimes, it breaks through. No matter how much I explain myself, no one understands this side fully. But I guess I never really explain it all. The extremely complex trauma and all it has come to encompass. It goes so far beyond medical/hospital trauma, where it started. The over-generalization of complex, prolonged traumas.
Oh! And GI. I had one loose BM today. It felt fine. I think the inflammation is less. Ended up taking 9 magnesium capsules, but spread out a bit. Hopefully, that will be the right amount, but I won't know until tomorrow. No sorghum today.
June 6 Ugh 😩. Can that sum it up? I'm still in a bad space mentally, and the physical isn't helping.
POTS-- I hate that I have this again. I actually thought with some combination of aging and lack of hormones and remaining active and avoiding trigger foods, I had overcome it. I had. But it's back with a vengeance. This time, no meds or salt supplementation to help. Perfect. Heart just pounding and pounding away. I always got flares with a fever, and I still have an elevated temperature, but that is starting to feel permanent too. I'll try not to be dramatic. Circumstances change. I could trade these symptoms for something else someday. Ugh, looking back at a year ago, photos of my vitals with my thumbs-up, showing that I felt good running 80/50 with a heart rate of 55. Oh, I can almost remember the calmness I felt in my body at that restful resting heart rate. That was a sweet spot for me. Now is just overstimulated madness comparatively, and seemingly having progressed the last few days.
The cough today was pretty minimal until the evening after G's shower. That bathroom air was choking me. Luckily, I got fresh air access. This is not sustainable...and I'm still trapped. Anyway, the coughing calmed after a couple hours.
We talked to AireOx, and they said the filter is the same. But I can't breathe around it. Great. I'm just so happy to have my airway involved in the game again. They're sending out a different (weaker) filter that is just coconut charcoal. We'll see if I handle it. It's less powerful for sure. But options are limited.
GI-- I had one unaided BM again today. I took either 9 or 10 magnesium capsules during the day. I lost count a bit. I hope 9, because otherwise I could regret it tomorrow. I don't know how long it will take to get back to stability there, 5 capsules being my sweet spot.
Then, there's my arm. It's been really hurting today, with movement and at rest. I iced a lot. Maybe it helps? Then, I noticed something disturbing. When I straighten my left arm, a sac of fluid bulges out of the elbow joint. Just how I remember my right knee started. Damn. I'm still relying on my left arm for a lot, since my left hand is still the only one that can grip without terrible pain. But this will get more difficult. And there's no reason to think this won't progress to the other side. I could lose all my limbs in not so much time. Wtf am I supposed to do about that? I'm already accommodating putting less weight on my left hand on the walker, when it used to support most of my weight and steer. I've got a blanket draped over the right handle, and I'm resting more weight through that forearm to compensate.
This is all impossible and ominous. I can't allow myself to think where this decline leads to. I just can't.
I'm still staying conscious, but with potsy fatigue.
Weight down one more to 88. Temp 99.8.
My kidney/flank area varies. Not too bad waking up this morning or tonight. Jaw is the same.
When the reflux flares and I take baking soda water, I start coughing all over again.
Still exercising for my mid spine pain. It's not severe anymore (based on my skewed scale). The rest of me, I move whenever I can in ways that my body permits. But just self-care takes up most of that. That includes kitchen duties.
Getting around in and around bed is hard and getting harder with the left arm. My glass water bottles are getting too heavy for either arm. It's all doomed.
My book took a turn toward in-hospital medical care and "overcoming." I'm not enjoying that at all. But I've got no attention span for TV today, it seems.
We got scary news about our family pup, Dexter, today. They think it's cancer. 😔 Dexter was my little buddy, along with Buttons, in my recuperation at Mom's immediately after my last surgery. He was a very good pup to me. The tiniest , sweetest little fluff ball come to life. Things got rough for him, medically and behaviorally, but my soft spot never went away after our initial bonding, despite his behaviors (attacking my baby Wilma). I've barely seen him these last several years. He is more allergenic to me, maybe due to his skin condition. Of course, I wish I'd seen him more. I hope I still can.
***Editing note to say that it was a scare, but he is okay!***
Everything feels so negative, and I know I'm really unpleasant right now. I'm depressed, and it makes me irritable and reactive and just so negative. I hope the mood can improve somehow. Cause I suck to be around right now. And I have to be around me a lot. Plus my caregivers, who deserve so much better.
June 7 The pressing issue today is this elbow. I was sure it had to be a stress injury, because of, well, the stress. Two bum legs. Right hand unusable for 5+ months now. My left arm and hand have been a lifeline. I've felt the strain in my hand and around my elbow. The elbow has been my fulcrum for all movements to change positions. And my left hand in charge of pretty much everything. But it's been getting more painful and harder to manage with motion beginning to be restricted. I couldn't bend too far, and I couldn't tolerate putting my weight on it. But as of yesterday, it's progressed (god, I hate that word.) Now, it's following the pattern of my knees.
When at a 90 degree angle and at rest, it seems pretty normal. As I straighten the arm, a sac of fluid is forced out of the joint. You can feel it and see it. It's squishy. Along with this, I immediately lost the ability to straighten my arm. It used to hyperextend a bit. And this past week, it's been aching a lot. I was trying ice, but I can't tell if it helps. Similar to my knees, it hurts when out of its preferred neutral position, and it hurts when in use. This is how it started with my knees. Pain prevented kneeling first. Then that weird little sac of fluid and reduced range of motion. Increased pain, of course. And then one day, they just blew up with fluid and excruciating pain, and while the fluid is a bit less, the pain and limitations are extreme. There's also the pressure/bubble build-up inside the joint causing absolute misery and movement restriction. Funny: the fluid sac came out of my knee when bent and comes out of my elbow when straight.
It's not like it's terrible pain yet. But it has become limiting and brings dread. I've lived through the progression of my knees to torturous, deformed stumps. This cannot happen to my arm. My right hand is still hopefully in a healing process. Unfortunately, I'm starting to have some doubts, because along with the muscle wasting, it is difficult to detect swelling, but it's becoming more prominent in the bones at the base of the hand. There are also very faint reddish bruises, one on each side of my hand. It's still barely usable. I've made progress, but only because I've babied it so much. Already, it's having to work more, and the pain has increased. I need to keep resting it to get it to heal (if that's possible). But I don't have a choice. I have to use whatever combination of hands and arms it takes to complete a task. Flossing is one my two hands are struggling to coordinate. The right hand can't hold the flosser without too much pain, and the left elbow can't bend far enough without too much pain. This is just an example of a million challenging activities every day.
So along with that, my left hand is just starting to have some very early signs of similar pain and strain. I'm running out of functional body parts.
This shit is bleak.
For my records, 8 magnesium seemed a good amount during the day, but kicked in too hard at night. Perhaps I've recovered from the sorghum experiment and will return to my previous dose. I'm not sure if I'll be brave enough to confirm that the sorghum was the cause. And my cough is terrible, although not constantly. Just easily triggered throughout the day, and when it gets going, it's hard to stop, happening almost convulsively. No brainstem auras, although I'm sure it looks similar when the exhaustion takes over. But I'm still relieved from that. Heart rate upper 90s. Temp 99.6. I've kept the AireOx purifier turned off. The coughing lessens when I can let in outdoor air that's clean.
June 8 Tonight has been hell. Tried to hang out with G after his post-work shower. I couldn't breathe. Coughing was severe. So I ventilated. Despite the outdoor air smelling far from perfect, it seemed preferable to choking. It was not. I gradually let in a bunch of laundry air as it slowly poisoned me. The coughing slowed, but the pain built. A massive migraine was triggered. All pain spiked. Full pain crisis. No AireOx to help clear the air. I was grunting and screaming as so many movements caused severe pain. Finally sought refuge in the bedroom, where the Foust protects me. But the inflammatory cascade is already in motion. Head pain spreading throughout head and face. Bladder on fire. I cannot leave the room. I can barely move right now. My entire body is buzzing and throbbing and aching. Goosebumps crawling over my skin. It's only 12:50, so a long night ahead. Hopefully I'll be able to brush my teeth at some point. My heart rate is 110. Please let this pass faster. I can't take it. I hate scented laundry with the fire of a thousand suns and wish that everyone who uses it would fall off the face of the Earth instantly. Save me from one of my many tortures. Makes me wonder why I would ever leave this room again.
It's 5:20. A horrific night. My body can't calm. The pain won't calm. The cough won't calm. It's warm in the bedroom, but I'm hot and cold. Peed my pants repeatedly. Massive output. Reflux coming into my throat and mouth. By some insane mechanism, the baking soda water makes me cough more. Too many times to be coincidence or imagined pattern. But it helps the burning acid. Before this exposure, I felt run-over-by-a-truck exhausted. But that was okay. I felt restful. Now, I can't rest. I have no idea how or when I'll sleep. But I do know that it will hurt. No matter what I do, it will keep hurting. Tonight is a genuine pain crisis, and as you may notice, I rarely use that word. I feel a bit like the boy who cried wolf, because I've been complaining and reporting horrific pain levels daily. Well, you can always have a spike. An amplification, really, of every ongoing pain and ones I can usually ignore. This is the crisis level.
The cursed laundry smell has not left the living room. It has nowhere to go and no air filter powerful enough that I can tolerate. I am relying completely on continuing to tolerate the Foust and surviving in my warm room. No AC tonight. I can't risk letting any of that air seep into here. Air management had been going well before this. I was managing to let some cool air into the bedroom and spend time in the living room when the outside door was open. Use the AC mostly overnight. I don't ever want to open that door again. I can't do anything once I've let it inside. Then I suffer for my failings.
June 9 Last night shook me with the intensity. It is difficult for people to not truly understand that you have been in a torture chamber, and it is not okay. I finally slept around 6:30am. Many wake-ups. Finally woke up after 3:00pm. Awoke with shocking pain. Every movement hurt. Trying to get the covers off hurt. My kidneys hurt a lot too. A brutal amount of fluid loss overnight. I can't account for all of it, but it all came out urgently. The bedroom was 82 degrees when I got up, warmest so far, despite it not being a very warm day. I very gradually ventured out of the bedroom. I was so fortunate to find actual fresh outdoor air around 6:30pm, allowing me to eat in the living room and cool down. Coughing had been intermittent and less intense today.
I was very fortunate to have family visits this week. So fortunate to have people that care and put in so much effort to see me. We managed the challenges, and I figured out how to transfer from the walker to the wheelchair on the patio. I can't go beyond that, but I'm grateful it worked out (with the right mask). It's still not possible with anyone else. Most people can't get unscented enough. It doesn't really matter what they do. It has to be a drastic, comprehensive, long-term, permanent change from a conventionally scented life.
The dreadful news has been tonight. First signs of a brainstem aura. Ears ringing much louder, feeling heavy and eventually stuck, startling from small sounds. I think I barely stayed conscious. But it's 4:45 right now. With today's altered hours, I don't know when I'll sleep. I hope to stay conscious so I can get ready for bed when the time is right.
June 10 Left hand is starting to hurt more with straining, very, very similar to my right hand. Don't know how I'll problem solve my way out of that one. The simplest things like flossing my teeth and opening my water bottle are more challenging every day. I'm still relying on my left hand for any task that takes a little strength. And it still takes a lot of my weight to help me get up and down and move around. All that strain is gonna keep making it worse. My left elbow at least hasn't progressed. I have been able to avoid putting all my weight on it, so I'm sure that helps. But it still has the sac of fluid that bulges out when I straighten it. And it still doesn't actually straighten.
Today was warm and smelly. Stayed in the bedroom where it was warm but not smelly. Only slept 6:15 hours. I hope I'll be able to go to sleep earlier to try to fix my schedule...again. I'm back to a bedtime after 6am, so I'll try.
Early aura symptoms tonight. I took 8 magnesium. I'm needing to modify day by day. But the abdominal inflammation was gone today. No bloating either. My plaques are generally pretty soft and calm today, except for the one on my nipple, which is still at its peak.
June 11 Well, it was inevitable. I broke my June streak of staying conscious. But before that, this morning, as I was getting in bed, my lovely husband assisted me in removing my knee braces, like practically every other night, but the joint was so tender that I screamed out in pain, despite using the same technique as every other night. Not fun for either of us. I cannot put weight through a bent leg. It has to be "straight" to take any force. This is why the muscles have died away. They just can't be engaged in that way due to the enormous pain.
Today was cool and rainy. That change did mean more freedom, but surely contributed to my issues. So, around 7:00, I moved into the bedroom so G could come in and shower. And it just came over me. The assault on my system. I collared up and tried to get my spine and legs in a tolerable position. Because I was feeling the extreme lethargy combined with my heart pounding fast and ears ringing...not so unusual anymore. But the standout symptom before losing consciousness is getting startled by tiny sounds or changes in light. Extreme magnification of senses, especially sound. Also the tingling in my brain and body. This one was strong. It came over me a bit gradually, but there was no postponement possible. It fully took over. I was out for at least an hour, paralyzed for longer. I didn't come out suddenly, but my bladder did. While still extremely dazed, I needed to empty my bladder immediately. With my broken body moving so slowly, I was lucky to make it in time.
By then, it was 9, and I needed to get dinner. Watched a chill show with G, lights and volume low. That's when the coughing got started and wouldn't stop. Frequent, convulsive spasms. Continuing and worsening until around midnight. I dared to open the door seeking fresh air, and thankfully got it. The cough calmed pretty quickly. And I think it would stay calm if I had continuous fresh air access. Can't believe how reactive I've gotten so quickly. I miss my AireOx purifier. But the filter change is what triggered this flare of airway reactivity. I still feel like there are way too many airway triggers, and it doesn't even make sense yet. But oftentimes, what I can see for sure is that the coughing is way less when I'm the bedroom and less with clean-ish outdoor air. And going into the bathroom is a trigger. Eating seems to be a trigger. All food? I don't know. Drinking can seem like it too, so that's where I feel like I'm grasping at straws. But I have pretty clear episodes of severe coughing and other times with very little coughing. The coughing spells are so strong and make my ribs ache so badly.
I'm so tired of this. Will the auras continue? Go back to being daily? Or is it more from the weather change? Who knows? I only know that it controls me. My life is so much worse when this frequent neuro episodes. Always feeling on the edge of the next one.
Magnesium was a bit too much. My flanks were quite painful the first hour of the day. Bladder accidents overnight. (Thank goodness for pads. These are pretty minor leaks that occur when I'm already in the bathroom about to go, but unable to move quickly enough.) Temp is very low with the passing out. 98.1. Haven't seen that in a while. It always comes down when I pass out. We'll see if it comes back up. Heart rate was 150 when upright, 90 now. I feel so fatigued, but it is hours away from bedtime. It's not sleepiness. Utter exhaustion and burn-out and neuro fog. I feel so dazed again, and it does feel possible I could fall back into it. I feel my jaw hanging slack. The pressure in my head is high, and the ear/throat pain came back with the migraine.
My sleep number bed can't hold air so long these days, so I was relieved to inflate it again. It's a tricky process, since it has to remain capped to hold the most air. We inflated it as far as it would go. It's a trade-off, but preferable, I think. Went from a sleep number of 5 to probably around 90. You can't check, because the hose can't remain plugged in, or it loses air even faster. That bed is so much trouble for me while also being my safe space. It is all wrapped up in so many layers to try to contain the memory foam smell. I was grateful to have it for my attack today, and also grateful the air had been purified by the Foust. It was as peaceful as a full body and brain attack can be.
To name one good thing, my hands were a lesser complaint today. Maybe I just didn't try to do much. But no. Even pulling my pants up is a painful challenge. But today slightly less so. Still having trouble with my water bottles. Opening them. Even holding them with two hands is a painful strain. I don't know if or when I'll be able to go without the hand brace or rebuild muscle. There's just nothing there. But I think it will come back naturally if the pain decreases enough to allow me to start using it. But for now, the left hand is way dominant still.
June 12 The battle between indoor and outdoor air is constant. Indoor air making me cough. Outdoor air risking intrusion of contaminants that I can't remove and that torture me. I got lucky with outdoor air several times today. Even in the bedroom, my cough got triggered during shower time. It only calmed with the open window. The biscuits still seem to contribute to the cough, especially combined with the shower. Then I took my own Monday shower, after a long day of cooking. I got lucky with fresh air during and after my shower. But tonight, as soon as it started to rain, the outdoor air seemed to make me cough. The endless balance. But I know I'm lucky to even have a choice. There's no choice a lot of the time. Of course , it's the mold here, in addition to everything else. God, I know it's impossible to find somewhere with no new triggers. It's impossible to find anywhere. It's impossible to leave my patio. But I need a new place to live. I keep getting more reactive to the air here, even without fragrance or smoke intrusions. But every house has its own molds and fragrances and VOCs. I could never adjust. And there will always be new things to sensitize to. I'm afraid a house is not a solution. That nothing is a solution. Especially since I'm stuck.
Why did I change the purifier filter? Of course I know why, but why did it do this to me? Why did it sensitize me even more to the air? Can it possibly reverse? When did this cough even start? Can it possibly calm down?
Oh, that's right. This cough started with the fever after the March 28th house visit...the beginning of the end. Yet another reminder that house shopping almost killed me, and it's not getting better. I believe my POTS came back at the exact same time.
And what's supposed to happen if my throat closes or I can't catch my breath? All that matters is avoiding the hospital and having a way out if needed. I do everything possible to avoid medical care. I control everything in my power to manage this disease and avoid progression. I'm already doing it all.
Around 9:30, I got early aura symptoms. Not sure if they'll come back now that the rain started. Maybe they'll pass without a full-fledged attack. Or maybe it will build up just in time to interfere with bedtime. That's always a delight.
I'm skinny. I'm bony. My rings are falling off today. That seems to come and go with swelling or something. Temperature too. But they weren't falling off in winter. My abdominal swelling went down. More comfortable, but looks even freakier to see my ribcage. I've settled on 7 magnesium capsules for now. Satisfied with my BMs. Haven't yet returned back to my system before trying the sorghum biscuits. Again, I don't think it's a coincidence, but I would have to try again to be sure.
Well, now I'm just coughing. With fresh-seeming air. Can't stop coughing. Delayed response to my own shower? There are no answers! Except sometimes there are. So you keep looking.
Fever is 99.9 tonight. Cough is ongoing at 4:30am. Normally it calms down by now. And with most coughs, my right lower ribs subluxate. Just another delight. Heart is pounding hard at 95 too. My body is quite flared up and cannot calm down. I wonder if I'll stay conscious until bed.
It's hard to believe so many things are going wrong with my body. Surely autoimmune attacking on multiple fronts combined with mast cell madness. But helpless against it. I never wanted a slow death.
June 13 More of the same. The cough was calm most of the day but has gotten very bad tonight. It's essentially a constant sensation of needing to cough with plenty of spasmic coughs. Didn't really get going until the magic hour of 10:00pm. Shower time, and I soon eat my evening biscuits. Then I just feel the need to cough all night, sometimes violently. Fresh air helps. Bedroom air helps. Although today, any time I had the purifier turned off even for a short time, I started to smell mold even in the bedroom. I smell mold the moment I leave the bedroom next to the bathroom. I cough a bit after my morning biscuits, but I've been pretty lucky with fresh air during the day. I just want to breathe easy. It's not even hot today, but summer brings out these types of problems. Maybe when it gets hotter, being stuck in the bedroom won't feel so awful since the air is safer. Although I won't be able to let the AC air in anymore, and I'll have to keep the purifier on, so it will be hotter. That will be worse than it has been.
Flank pain and bladder problems persist. TMJ sucks. I've been on the verge of brainstem aura all night. Feels horrible. Heart pounding a lot around 90-95 at rest. Temp 99.7.
I'm still having problems with my head pillow in bed. I need more height. We've inflated the bed a lot, but this problem persists. I wish I could try out a bunch of pillows. All 6 bed pillows are already in use in my bed setup.
I'm trying to keep working through, but I feel so utterly hopeless and desperate and bone-tired.
June 15 Well, today brought more desperation. The coughing started during breakfast and kept up during the day, then finally lessened around midnight. I also had unusually frequent urination all day. I was only having this problem close to sleep hours before, but it was throughout the day today. My bladder hurts too. I got more of the early aura symptoms and even lost some time, but my body was honestly too unsettled all day to pass out. The urge to cough just sitting in my chest, never leaving me. The bladder. I only really want to be asleep anymore.
5am check in. I turned the ac on to prepare for a bit warmer day, and immediately started coughing again. And it smells like mold to me now. I've really never been aware of this scent before. But now I'm sensitized to it. Literally just since Friday, the day we changed the purifier filter. (Correlation/causation--impossible to know) I just became aware of the smell of the mold I live with. And I will never be unaware again. The only thing I did differently last night that could have led to such an aggressive coughing day is put the new filter in the AireOx purifier. They sent me one that's just coconut charcoal. Neither one had any scent at all. They said they off-gassed this one for me. But it can always be anything. Again, it could be totally unrelated, but I'll have to find out.
5:30 Switched the AC to fan only, and the coughing calmed again. It was so aggressive. Into the strong correlation category. I believe the reactivity is to both the purifier and the AC. All that's supposed to help my air.
There is no way out of this, and I don't want to see what happens next.
June 15 I understand that what I went through tonight has no effect on anyone or anything. That it was purely my own hell to suffer and endure. That if I don't speak it, no one would ever know. That even speaking it has no effect on anything. But at least it might be more real. Because inside of me, it's one of countless nights that leave a mark. They damage me. They break me. They make me worse. They make me more unpleasant and easily triggered and afraid. All I've been through and will go through contributes to my current state of irritability, rage, despair.
It's easy to say it was another brainstem aura. And it was. And every one is horrible in its own way. This one felt worse for a few reasons. This necessity of fully losing consciousness has been accumulating. So the symptoms spiked at the first chance. I put a collar on around 9:30. But I didn't have good head/neck support from my pillow positioning. I had a light on in front of me. Air purifier at full blast (so loud). I was getting sensitized to sound, so I stopped the show I was watching. but I should have better diminished sound and light and positioned myself better. Superhuman senses kicked in. Insane ear ringing over the blast of the purifier. Vertigo, nausea, heaviness. Startled by everything. I finally sunk away for at least a few minutes. But not long at all. Then, G came in the room and startled the shit out of me. He couldn't have known what was happening right in front of him. But he went about putting his laundry away while I stayed in a fully paralyzed but aware state. My brain constantly trying to escape into unconsciousness, but every sound startling me back with a torturous sensation of electrocution. This felt like it lasted days, but couldn't have been long. Maybe 20 minutes, although he left the room and the paralysis continued. During all this time, I felt desperate. Desperate to make the sound and light stop. Desperate to make my voice heard, to make my needs known. My need for quiet and darkness and head support. My head feeling unsupported also caused frequent startles, and made the whole attack even more reminiscent of the Neuro ICU. The noises. The lights. The head falling off sensation and the choking feeling I get when my head is back a bit. The inability to scream for help. That no one could hear me or see what I was going through and what I needed. I tried screaming today too. Over and over. I was trapped and powerless and terrified and desperate for it to stop. My brain did not get the break it was begging for. I felt no relief. I still don't. Sitting here in darkness and silence, I still feel my brain's need for escape. Today did not provide that. It's so hard to call it relief when I do fully pass out for as long as needed, because before and after, it's accompanied by all the same sensations, including the superhuman senses and startles and the paralysis and migraine pain that follows. But there is a sense of deflating some accumulated pressure when I've been fully out for long enough. I wish I could schedule these episodes for when I'm alone, put on an eye mask and ear plugs, turn off all machines possible, and then somehow just exist in this world of sensory deprivation that my body clearly craves. And just get it over with. Release that pressure a bit.
From the outside, the more dramatic things are more meaningful. That I'm at my lowest weight (down to 86), and my rings slide off. That my body is spotted and marked. The visible swelling. The horrendous coughing for hours on end. Even the low grade fevers and hypotension (although for me, it doesn't feel low. I felt more content when bp and hr were both lower than this. My body was at peace.) People (mostly doctors/nurses) care about the numbers and the visible signs, not so much the lived experience. It's harder to care that your heart is racing at 90 BPM day and night, when 55 is comfortable. Since technically, heart rate from 60 to 100 is normal. My abnormal feels better.
And by the way, I don't look good or well! I'm tired of hearing it knowing how ravaged my appearance is, much less the fact that the outside doesn't reflect all that's raging within. I'm just being friendly. If you saw my decrepit body in person, if you saw me attempt to move, you would know otherwise.
This world breaks me in every way. Body, mind, and heart. I am shredded.
Other updates: My cough was less today. Still moderate at times, but not as severe. Things I did differently: no AireOx air purifier overnight. No AC. I believe they both make a difference. I let in fresh air when I could. I couldn't avoid using the bathroom, which gets me started every time. The part I don't even want to write is that being near Mom feels like a trigger today. My newly sensitized moldy nose detects it. There's nothing to do about it and no changes that I would make. Just get fresh air access whenever I can, which is only really comfortable when it's temperate, but necessary year-round. This does make me feel more suicidal.
Today, my urination was amazingly normal. Minimal flank pain and no excessive or urgent emptying. Normal volume. I think a factor is that I needed very little baking soda last night, which means a lot less sodium. But tonight, my heart burn is worse again, so I will need plenty of baking soda.
The coughing is still moderate tonight.
My ear and face and jaw are hurting a lot...where the migraine is living.
My bite is worse, and the TMJ a problem more than ever with my broken retainer.
This is a body that has needed constant upkeep. Each component of this has spiraled out of control by going untreated for all these years. Seven years since my last hospitalization, after which I had to withdraw myself from most meds. No real care since then. No tolerated treatments. Just constant and accelerating deterioration.
This ship is still sinking. No way to bail it out. Just watch it go down.
My wishful thinking: that it isn't prolonged too long...that Mom and G could somehow not be affected. They give and give. No one could imagine all they give. They deserve the world. They deserve happiness. They do not deserve to watch this submersion.
June 1 It was cool today. 60s mostly. So nice. And actually what felt like clean air in the afternoon. I had my freedom. My cough wasn't too bad in the afternoon and even through the early evening. I lost access to fresh air around 6. By 9, still no fresh air, and the coughing got going. It was most intense between 10 and 12, notably right after G's shower, but also when I was attempting to talk. And also after eating my last 2 meals. The coughing was really strong during and after eating my biscuits, while also talking to G. I know it drives him crazy. It's incessant. It's hard to get out a word, much less a sentence or a story. It did actually calm down after he went to bed. But I was also done eating and talking.
I haven't used any air machines in the living room today, since all are potential irritants. Mostly the AireOx and the AC. :( There aren't really any more cool days coming, so it's about to get worse around here. I don't know how I can use the AC when it affects me so much. I want to let in fresh, cool air when possible, but it's not clean tonight. Smells like a combination of smokes and fragrances. I saw that our actual local AQI is unhealthy and all outdoor allergens are high. Not helping my cause. And then no air purifier in here? How am I supposed to do this? Sure, today I managed. But the air quality was good-ish during the day, and the temperature friendly. No AC needed. No seeping scents. That will change.
I honestly don't know I'll manage the hot bedroom days of summer. This has already been impossible. But I cannot stand the sound of the Foust blasting 24/7. It overwhelms me. But it will be my only protection. And then what about the heat? I just can't use the AC? And even if I do, I certainly won't be able to allow it into the bedroom if I want any breaks from the coughing. Ugh. I'm exhausted just thinking about it.
Tonight, I have some coughing that is really hurting my rib muscles, but not constant. That same flank area pain. I have bloating and heartburn. I have an irritated bladder. Not excessive volume today. Just the constant sense that I need to pee. My eye is recovering from an overnight corneal abrasion. All my bone/joint/muscle stuff continues. Improvements in my right hand seem to have halted. My left elbow is less acutely painful, I think because I've been accommodating it more and avoiding putting weight on it. But the fluid bulge is still there, and the movement still limited by pain. These things don't seem reversible. But at least no new pain locations for a while.
I feel that life has been very heavy this week for me and my inner circle. My emotional state has not been helping. I do my best to save up my light and my energy and my good times for when I'm with my treasured company. But I fail plenty. The storm raging within cannot always be contained. Last night, I could barely even say a word to G, such was the timing of my neuro symptoms. And he rightfully went to bed a bit early, seeing that I needed dark and quiet. Then tonight, I could barely talk through all the coughing. Truly. And all of this is ignoring the bigger picture, which is unthinkable, as always.
I wish for rest and calm and a bit of lightness. I don't know how that could happen. But it's needed.
June 17 Today was a quiet day. Meaning me. I was quiet. Not peaceful or restful really. Just muted. Seeing as how bad my coughing seems to be, particularly with the combination of eating and talking, I didn't do that today. I ate, but I barely talked. I especially didn't talk anywhere near eating. One of many cough contributors is my swallowing. I am not swallowing my food well. The crumbs hang around in my throat. Mucus is produced at the irritant. And it just kinda hangs around back there for a while after I eat. (About an hour?) So I silenced myself. Refrained from speaking. It helped. One more thing to be wary of. Why is my swallowing worse? I guess a neuromuscular function, which seems to be one aspect of this. But also, just my throat and cough reflex being so sensitized right now.
I've avoided the AC and the AireOx another day. It was warm. I got "fresh" outdoor air a couple times, but it got invaded each time. Tobacco smoke, barbecue smoke, fragrances. Tonight, the air is so cool, and I could avoid AC again if it were clean air, but it's not. Tomorrow's in the 80s. The whole week's in the 80s. I don't yet know how I'll approach air management, but as always, air quality has to come over air temperature.
Avoiding the AC and AireOx has significantly reduced the chest cough. That's been almost gone. It's the same sounding cough either way, but the root is different...from the throat or from the chest.
More early aura symptoms today. Irritated bladder. Bloating. Heartburn. Heart pounding hard and fast tonight. Not sure if the aura will hit in full. I'm closed up in the warm bedroom for now. It will be hard to sleep in here. I think it's already 80°. I've been sleeping pretty well for a few days. It will be harder with the heat.
Came back to add more. So many bad scents tonight. I'll be sealed up here in the bedroom. Currently, the living room reeks of skunk. I didn't even let it in! It just seeped in. So lucky for my unventilated bedroom of protection. My head is killing me now from smelling it. I had to brush my teeth sometime. And I've got no air purifier out there that can tackle that. No AC tonight. No ventilation. Just sealed in with my monster purifier. God, I hate the sound, but I need the filtering, of course. No brain rest for me. My bladder is killing me now too. We've gone years without skunk trouble. I hope it doesn't become frequent again.
4:30am Confined in this very warm bedroom. Garlic breath apparent in this space. It burns my eyes and mouth and crotch. So warm. So weak. Getting frequent sensation of being shocked. Monster air purifier on high, so my brain cannot rest. No usual distractions available, because I cannot handle any additional sound. Just sitting in the heat and audio overwhelm. Headache throbbing like hell. It is way too hot to sleep in here. And it's not even really hot outside yet.
Just went to try to clear out the skunk smell. Turned on AC fan only, and the irritated chest cough came back within two breaths. How am I going to survive without that? I need cool air, and I need to breathe. Same with my AireOx. It would have taken care of the skunk, but then I couldn't breathe. This will be a desperate situation. This 81° bedroom is impossible. And now I can't breathe, despite being holed up in the bedroom. Just a few breaths. It's almost 5. Not even close to being able to sleep. So much air management to do.
5:30. I've only been blowing outdoor air through the open door, and finally letting some coolness into the bedroom. And I'm choking on it. Spasmic cough is back. The air quality is too terrible, and this cough is clearly caused by everything. My head is killing me. The room has barely started cooling. I was hoping to leave everything opened up to sleep, but I obviously won't sleep if I'm choking on the air. I'll try to just wait it out as long as I can and then just seal back up to try to breathe and sleep. I've done so well with the outdoor air at times with no fan. The fan is to accelerate the cooling/ventilating process. But I guess it's good to know that maybe the outdoor air and the AC air are not so much different in triggering coughing. My options are roast and breathe or cool and choke. Great. Also, my body pain is nuts tonight. Shoulders and hips joining in the fun. I wouldn't call it a pain crisis. I reserve that label for multiple body parts at 8-10. But it sucks. Sealed up in this sauna, and no sweating. Broken, broken body. Roasting inside.
I don't feel confident about the current safety of the outdoor air, but I feel I have no choice. It's almost 6am, and still waiting for tolerable air.
June 18 Well shit. Each day's horrors bleed into the next. I don't know when I fell asleep. 7-ish with the ventilation still going. G woke up and helped me get in bed. I had fallen asleep with no collar and poor head support. But after that, I slept hard and long. I had a wakeup around 11? I thought. It's hard to tell, because I had a vicious corneal abrasion. I carefully applied more ointment and gel and hoped to sleep it off a bit. Put on a new audiobook (surprise! It's a book I read last year and just forgot). I did fall back to sleep and didn't wake til 3:30. Ugh. Luckily, G was around to help me bandage my eye. It has had to stay covered all day. Eye closed. Minimal eyeball movement. I was just pouring out tears and liquid from the left side of my nose. Just like a faucet. I don't know why this flare up with my corneas.
So, after getting dressed and getting going, I ate breakfast at 4. It's all a blur after that. I was in bed. Low lights and sound. Head pretty supported. I was NOT coughing. And as I'd suspected, my brain seized on the opportunity. I had very prolonged loss of consciousness. It felt less violent than other recent episodes, probably because I accommodated it well. Much less time paralyzed but aware. Less aggressive startle-electrocution reflex. It still didn't feel restful. It feels like a neurological episode for sure.
When it was finally done (I actually was awoken by a phone call and was initially speaking gibberish, I believe.), I got up and urgently had to go for food. It was 8:00pm-ish, and I'd only eaten a few biscuits all day. So in the next few hours, I ate smaller portions of lunch, dinner, and snack. I watched an easy movie with G. (Ted) He helped out by changing my fragranced bed sheets while I basically gave directions. Unbelievably, despite all the mattress encasements, that memory foam reek has soaked through. This time through EVA (shower curtain material). It is now saturated. I didn't have any other layers to add, so it will soak through quickly. How did it even absorb into that thick plastic? I'm still just putting a band-aid on that situation. I thought this was a fix but there is no fix.
Anyway, I cut off my eating at 12:30 (normally 11:30). I have no idea when I'll get to sleep. There's been very little air management today. I can't explain that. I'm airing out the bedroom still now (2:00am), mostly because of food smells on breath. Plenty garlicky. I can't be sealed in with it again. Last night was torment. For tonight, I'm out on the warm living room for now. Don't ask me how. It's hard to imagine my body sleeping when I've spent so much of the last 24 hours either sleeping or unconscious. But I honestly still feel head pressure and ear ringing and fatigue and therefore pass-out potential. I don't know when my digestion will allow me to sleep after consuming so much in so little time. The heartburn is just getting going.
My eye still hurts too much to be uncovered. I can't believe my skin has tolerated the tape all day. That's a surprise. I assume it's just that my histamine levels are feeling low. No itchy nose or eyes in a while. I'm not sure what to thank other than diet and avoidance. I used to scratch myself silly most of the time. My plaques itch, of course. But mild compared to previous itchiness. But I hope my poor eye can recover. I like being able to move my eyes, especially to read in bed. Also, my right eye doesn't see well. I'm actually seeing double right now with my one eye. It's kinda strange that my eyes are dry, because my facial skin is quite moist. And it's not the humidity or any air moving overnight. My eyes are swelling a lot, so I guess the tear ducts could be blocked when they swell.
I'm still trying to not talk and eat very small bites to try to help with the coughing caused by poor swallowing. This has been my lowest coughing day in a while. (I also wasn't exposed to much moving air.) In the bedroom, where I am not, with the open window, I was coughing. There sure is something in the air. Out here in the living room, I'm just enjoying the still air...and still not coughing barely at all. Just tolerating the warmth.
I sure don't want to redo this day, but it wasn't the worst. A pathetic statement on my life, to be sure.
I was attempting to watch the movie Sliding Doors earlier. Not sure if I'll try it again, because I now associate it with my neuro episodes. That list keeps growing. I'll just watch nothing. Brain rest feels pretty good. Not quite to the point of boredom yet.
Another warm day ahead. I'll just have to wait and see how the world or my body attacks me next. Please, no more skunk sprays. It's amazing how it filled our apartment even with everything closed up. Yet again, it felt like living a nightmare. I'm feeling so completely depleted. Maybe I'll sleep tonight anyway. This has all worn on me so much. Despite the pounding heart, I feel pretty much just like resting. Like I'm really fading away. I normally have a pretty high TV drive, to stay caught up with my stories. Just nothing is preferable for now. Maybe that means another attack is imminent. I'd better put on my brace and prepare for impact, just in case.
June 19 My day started okay. The biggest problem was the warmth of the bedroom. Still being silenced by my desire not to cough. Coughing was pretty low today. I do feel the mucus build-up in my throat when I eat, especially biscuits. And then the crumbs I'm eating sort of move upward toward my sinuses. And all those little crumbs are dripping down my throat, making me cough. Talking clearly makes it worse. Too bad my two most common times for company are while eating biscuits.
I surprisingly did okay, getting some fresh air, and able to be in the living room in the evening. That was nice. I took my shower tonight. That was really, really hard. I noticed that I cough the most the moment the shower ends, interestingly. Then, I can't dry off and get out of the bathroom soon enough.
My body pains are continuing to evolve. Knees the same. Right hand stalled. Shoulders, especially right shoulder, is popping like crazy. Bubbles inside. For now, they don't hurt much, but it's worrying. My hip joints are hit and miss. Sometimes I can spread my legs, other times barely at all. In terms of lifting the leg up or in front of me, the left leg is usually totally fine, and the right leg is usually restricted by pain, so I have to help lift it with my hands. Yes, it feels pathetic. My left elbow is less severe than it once was, but still limited straightening and a fluid sac bulging out. But the pain has moved down, and I have new pain in the lower arm bones with rotation. And then the left hand. I still rely on it for grip. I couldn't uncap my water bottle or put on my knee braces without this level of grip strength. But the hand pain is progressing. It's a terrifying prospect. My right hand truly can't help. My hands are bad enough that I'm using Ziploc bags with a slider instead of a zip. I have no idea how I do anything and no idea how long it will last.
My cornea is still healing. Upon waking up, I immediately apply drops and gels to my eyes before I even sit up or open my eyes. It's my first task. Some days, it feels impossible. I feel weighed down by the weight of a single top sheet. I truly feel too weak to roll over and reach for those eye drops, despite having done it by feel for years. I can honestly just barely move after lying flat. The pain is shocking. The weakness is too. All I have is will.
4:30am update: really bad. I strained my hands and arms and everything way too much in trying to close the bedroom window. My right front hip (hip flexor area) is excruciating. I'm coughing violently. The shower was rough on me. I also ran the AC for a few hours, trying to have a cooler bedroom for sleep and for tomorrow. All of that was rough on me. I can't get a clear breath. Coming from both my throat full of mucus and my chest now. The strain of coughing is causing excruciating pain in my hip flexor somehow. The shower. The use of the AC. The big temperature change. It all contributes. So, I can't expect to be able to open and close the window anymore. That will really limit my airing out ability even more. It was all I could do to not scream as I kept changing angle and approach to shutting the window. I'm losing my left hand. Not immediately, but it's going. I don't know how I can baby it how I baby most joints. I need it. I also take back whatever I said about my left elbow. It's worse again. All my muscles are seized right now. This cough is terrible. So much mucus. I already rinse my sinuses daily, and that used to deal with this problem. It's progressed, and it's hard to breathe. Oh, that word again. How many times have I said I can't handle more progressions?
June 20 I tried GF oat flour biscuits today. Not for the first time. I believe it made the post nasal drip less severe. We'll see how it goes. Don't want to pay extra if it's not necessary, but it sure sounds like something my body would do, despite having spent years on and off of GF diets without noticing a change previously. I'm also eating very carefully (tiny bites) and trying not to talk.
Well, a lot has progressed. My left hand is now braced. The brace I have has only been off-gassing a couple months, so it still smells pretty bad. I can no longer trust my left hand for the same tasks. Everything is harder.
Then, my left knee is also worse. Like in the early days of my knees going bad, when my right knee would have an enormous pop upon sitting. That happened today with my left knee. I normally put more weight through my left, better knee. But the left knee has gotten crankier. That pop made me scream loudly, then moan and shake. If I could have curled up in a fetal position, i would have, but I can't. So I just sprawled in pain.
Today's desperate problem-solving purchases: enormous mylar foil bags to attempt to wrap my mattress toppers, since the smell has saturated the EVA plastic layer. I guess I could just keep replacing that layer. But I bought the foil bags. I have no idea if the foil will remove all comfort or make too much noise. But it will block the fumes. Otherwise, it's the polyethylene moving bags for wrapping. I already know that destroys the comfort. My bed: both the fumes and the comfort, is an everlasting source of distress.
Next, I have to give up my glass water bottles due to the weight. My hands can't handle it anymore. I ordered some supposedly safe plastic bottles. Desperate times again.
Mom will be bringing me a couple polycarbonate cups to use instead of my heavy glasses, since they also hurt too much to lift. And she'll also bring a seat cushion for the chair in the bedroom, in case I'm forced to eat in here and sit in the uncomfortable chair.
The AC is making me cough again tonight, despite being in the bedroom. But not as intensely as last night...so far. It's always dangerous to write before 2am. There's so much remaining time for disasters.
Doing my nightly cooking was so hard today. I made quinoa, which is the most work-intensive food I make. It was very hard on every part of my body tonight. It hurts so much to lift 3.5 lbs. of quinoa in a 2.5 lb. bowl. Sounds pathetic, I know. To lift that bowl in and out of the microwave. Repeated straining during the cooking process. I cook and rinse carefully to remove the saponins, and I cook in a ton more water than usual to make it really tender and easy to chew and digest. I make excellent quinoa, but I have to earn it with pain.
No auras the last two days. The mega one Sunday seemed to temporarily get it out of my system.
I missed my Spanish group today due to the knee pain delaying my food. The next two days will actually be private tutoring, so I'm really hoping my body cooperates.
But Thursday, I have a psych appointment. I really resent having to go. It will really mess with my day. I'm honestly normally eating breakfast at 3, and I really don't want to make that any later that day. The day honestly sounds like too much. I wonder if I should cancel the lesson. Probably, since I need the appointment in order to keep getting my Rxes. How annoying.
My poor hubby cannot sleep with me coughing incessantly beside him. But having the AC on makes me cough...a lot. And this is the only time of day I let the AC into the bedroom. It's miserable. But there aren't as many scents at 3am when it's cooler. Although the lobby cleaning will likely be tomorrow and add more scents, which prohibits any airing out of the bedroom for 2-3 days. How is it possible to go on? I need to breathe, and I can't turn my bedroom into a sauna by keeping it fully closed. And G needs to sleep. I'm ready to check out.
June 22 Pretty dazed. I had a rough brainstem aura 9:45-11:45. But I knew it was coming by 6:00. Early warning signs were there. So I got really ready this time. Phone silent. Husband warned. Sound and light low. Ear plugs and eye mask. Tried for good positioning. I've never tried all of that. I thought it could be a bit more restful. It was still terrible. Heart pounding so loud and hard in my ears. The nausea was intense. I was still in and out of consciousness. Again, it felt like it went on forever. Absolutely not restful! I'm feeling like utter crap now at 3. My schedule is off. I haven't done my overnight AC yet, because I can't take the coughing and the noise. My brain aches. The sense of nausea continues.
We're still under air quality alerts all week. The weekend will be even hotter. The bedroom is staying around 81 degrees most of the time. I guess it's time to go cool it again with the ac and air purifier blasting. Hard to breathe and chaotic to my senses. There's plenty more going on, but this wore me out.
It's another garlicky breath night. It makes my eyes burn and bladder burn and I'm pretty sure I feel it in my chest too now. Hoping I can air out enough. It's almost 5am, and I haven't been able to cool and air the bedroom enough yet.
June 23 Dealing with a deflating mattress. I think it's probably been deflating for quite a while. But currently, it goes from full to empty in under an hour. But it hasn't been holding air well for a while. Surely contributing to my body pain. Waking up being agony and all. Due to leakage, we capped it off a few weeks ago, so I haven't been able to check the sleep number. I thought it was capped while practically full, but I am doubting that it stayed full. Andy helped me today to do some experimenting, and it seems like the worst result. I'll be sleeping on the empty mattress tonight and who knows how much longer. I have a mattress at Mom's house. But of course, it's no easy feat to transport two mattresses. 😔
And tomorrow's a hot day without much of a cool down at night. So I'm really miserable. Bedroom was up to 84 while I slept and the first hours of the day before I was able to get out. The fresh air isn't even close to fresh...air quality alerts. But I don't have much alternatives. But then tonight I had to seal up again when laundry air got in. Of course, as soon as it cooled down. I've just got the one purifier I can use now...the heater in the bedroom. (Not really a heater, but might as well be one.) It saves me. I'm trying to run the AC all night with the door open to ease the pain tomorrow. Although I know it will heat up all the same.
June 24 Unbelievably exhausted. So much. Sleep was horrific. I've never slept on an empty mattress before. I've slept on it low, but not empty. I had to lie out pillows in a line, but still so out of alignment. Andy and Mom did the heroic task of replacing the insert themselves today with the one from my bed at their house. From what I can tell, it is holding firm! But I am paranoid and afraid to let air out. But tonight promises to be a more comfortable sleep by a mile. So grateful.
Right before that, G came home from a conference dead on his feet. Tested. COVID positive. Devastating. To protect me, he immediately left to quarantine in a hotel. And then I was alone, and I will be alone. G is in charge of end of day necessities as well as my sunrise bedtime necessities. Basically, he comes home from work, helps me, sleeps, and then helps me again. I haven't been able to compile a list of all he does. Mom will help out as much as possible on the afternoons. But I am without my overnight caregiver (and life companion). Devastating. And terrifying. I have already injured my left hand worse trying to do things that he would normally do. It was opening a gallon of water after hauling it several steps without my walker. But opening it is what really hurt me. I'm not sure my left hand will recover. My saving grace was that my left hand didn't yet hurt between the thumb and forefinger. But now it does. There's a real possibility I won't be able to remove my suffocating knee braces. They are so tight, they leave dents and bruises. I need them, but at the end of the day, I can't stand another minute. But it takes so much hand strength. He also puts my neck brace on for sleep. There are countless other tasks that have become the norm for him to handle. I miss him. However brief, his nighttime company is irreplaceable. I worry for his well-being. He is extremely well-vaxxed, having been part of a trial for an extra booster. But the symptoms did seem to hit hard tonight. A cascade of them over the course of a short phone call. Of course, I worry that it will hit me too. But even more presently, I worry simply about getting myself to bed unaided.
I am beyond exhausted from a very long day of cooking in a very warm apartment with a storm and a pressure drop. My head pressure is bad. We've had a steady barometer for a while now. But it gets a bit bumpy for a while. I'm exhausted and scared and overwhelmed and sad. It's clearly remarkable we made it this long without anyone in my innermost circle contracting it. It is beyond imagination how on earth I would deal with that infection, or any infection really. Barely getting by is an extreme understatement. Basically withering away in excruciating fashion is more like it. That's my baseline.
I'm past the point of tolerating light and sound today, so just sitting here in the quiet basically. (Except for the noisy AC) As the apartment cools down for the night. Cough on the milder end. The aching in my back from the mattress trouble is bad. I could use a three hour massage, although most of my body can't really be touched. Nerve pain in my feet is acting up. Very concerned for my deteriorating left hand function. Opening a gallon of water nearly broke me. This task is normally handled for me, but I could still do it until a couple weeks ago without causing real damage...just too much strain. Now, I feel I need to avoid ever trying to open it again to try to preserve my hand. Flossing will be hard tonight. It's a difficult two-handed task.
I feel my jaw going slack. Definitely fading away. How will I manage these nights alone? And how many nights will it be?
Grateful for my bed. Grateful for Andy and Mom and Gustavo. Missing my honey.
June 25 I want to sum up, but it's so late. Being without my overnight help sucks. It's so hard. I hate that he's so sick, and I can do nothing.
My bed is fixed! I still am having trouble finding a fullness for both lying on my side and back. Continued trouble with alignment and pillows. But I have a bed where I can experiment and try to find a working solution.
I'm pretty convinced the sorghum biscuits led to the GI inflammation and rectal shut down. Sorghum was the only novel ingredient.
I'm pretty convinced switching to gluten free flour has been great. I'm so afraid it's a placebo effect. But I'm eating and swallowing easier with less coughing from biscuits. I guess even trace gluten has become an actual food allergy.
I've been running my AC for many hours at night. There was a terrible building fragrance today, but it's lessened for the night. My coughing has been more manageable. My heart rate hasn't changed, but it was pounding less today.
Everything else is continued terribleness. Only managing overnights all alone.
Feeling extremely alone. Being even more isolated than I already am feels desolate. I know it's not forever. Yesterday was day 0 of his quarantine. Today was day 1. I'm not sure how many days we're actually planning on. Of course, he has to be symptom free and test negative for consecutive days. I think that's the plan. For now, he's going through it. I hate it. I love that man, and I miss my partner.
Wow. I wrote a lot. I'll just share one photo my mom got of my leopard spots. They are all actually fading right now, that outbreak apparently ending. There are so many more, but this is the only photo modest enough to share. Me, modest? Haha. My temp has been staying around 99.6, and my heart rate near 100. So I don't know what that means for the state of the flare.
Thanks for reading. Thanks for caring.
