2023 Recap

The never-ending downward spiral

I pieced this together from a few different journal entries.

I wrote them throughout December, and there have already been some changes, as the situation is ever-evolving. But this is what I have to share today.

I was looking through photos, and what a bizarre and evolving year it was. First with the hugely swollen knees and the start of the massive atrophy and cachexia (severe and rapid unexplained weight loss). Then the pink spotted and streaky rash that seemed like psoriasis to go along with the hugely swollen knees. And then the right hand joined in with swelling and horrible pain first followed by major atrophy and deformation, to be later followed by the left hand in the same way with major loss of function, although it has not progressed as far yet. The loss of tolerance for car travel leading to progressions. (I left the apartment four times this year, the last time being April 8th.) Losing my ability to walk without a walker after a single car ride, never to be regained. And then I think Covid. And with Covid came the flare of neuromuscular issues. It wasn't my first episode. My previous episodes were mostly facial, particularly severe eye drooping. I have had flares of this on and off for years. Loss of tolerance for sound for 2 months. Or more. Still not great--easily overwhelmed. But then with Covid came the severe dysphagia and eating and swallowing issues. Limited to a few pureed foods. Severe episodes of paralysis. Incontinence. All neuromuscular issues. Daily episodes of prolonged unconsciousness. And all along the way here, my left nipple developing severe pain and sensitivity, requiring months of being bare chested until an ingenious solution was found to protect my nipples, both of which now cannot be touched. Then things have evolved more. There's been no more psoriasis like rash (although it left very rough skin behind), but instead different types of rashes and severe, severe itching as I developed intolerance to all types of compression (bras and knee braces) and a couple more foods. Itching so severe that at times it only let me sleep an hour a night. Once a rash starts, it never really goes away. The rashes from my knee braces and my bras have never left. They flare up whenever they want. And the skin never returned to normal. Same with injuries. They never really heal. Further atrophy and weakening. The loss of tolerance for knee compression causing severe progression of my knee deterioration. I was having prolonged loss of consciousness daily, up to 3 hours. Late summer loss of access to my recliner for rest. That, along with no longer being able to rest in bed, left me staying awake 20 hours a day. In September, it appeared that I wouldn't survive due to the continued weight loss and neuromuscular progression. But things took a turn. Regained access to my recliner with cooler temperatures. Neuromuscular issues gradually lessened. Although variable levels of daily paralysis and fatigue-based weakness continues. And the atrophy is permanent. The massive edema in my feet spreading up to my calves. And then separately, the developing of the peripheral neuropathy burning in my feet. And then that continued progression of degeneration and deterioration of my musculoskeletal system. Muscles wearing away further. Bony deformations. Progressive joint pains. And then severe pains through my arm bones. Around October or November, I reached the point of screaming out in pain throughout the day everyday from the most basic movement or touch. And then the restricted movement, particularly of the left arm. There is stiffness in many areas, but the left arm is totally different in that it never loosens up enough to bend to touch my own head or face. That has also been progressive, and is associated with severe pain and ridiculous limitations. Initially arm pain with weight-bearing, then pain with holding anything, and now the pain can be severe even just holding my own arm up or the slightest touch. And then the beginning of those same pains in my right arm, which threatens my ability to do anything myself if I can no longer reach my own face or head with my hands (feed myself, dental care, etc.) Or even just the loss of the remaining function of my hands, which is extremely minimal. The severe pain of my back pelvic joints as the atrophy/arthritis progressed, leading to severe pain with sitting and lying down and near impossibility of tolerable positioning and an unbelievable, necessary bedding setup with a hole cut out for my sacrum. This necessitates that I stay in one position at all times, which is also unavoidable since I am unable to move during the night. Bed became a torture. The kyphosis in my spine worsening and becoming more symptomatic with tingling and needle-like pains. I am permanently hunched. Insomnia due to all of these pains and the impossibility of getting comfortable and the weakness making me unable to move in bed. Severe adverse reaction to the final medication trial, from which I never seemed to recover. No more prolonged loss of consciousness. Instead, inability to rest due to severe symptoms when reclining. Losing more and more independent abilities along the way, leaving very few left, and those are threatened by the loss of the use of my hands and arms. Struggling with bowel control due to atrophy of gluteal muscles and need for laxatives and a stretched out rectum. And all all all this time, the severe migraines and trigeminal pain and bladder pain and worsened insomnia, all associated with my progressive reaction to fragrances and inability to avoid them, even in my home. Unable to get in and out of bed myself since September. Eight hours of caregiving a day. But the impossibility of extra caregiving due to the insane level of fragrance sensitivity. Wearing a respirator in my home just to try tolerate existence and allow rest. And then the loss of tolerance for showering. Since it leads to weeks of insomnia and itching and agitation. So I just stopped. One finger joint totally fused bent. Large deformation of my sacrum. It protrudes grotesquely, causing excruciating pain in any sitting or lying position, worsening the insomnia once again. Suffering from major malnutrition and persistent BMI around 13, surviving off only a few foods. The pain in my hands and arms so severe that I struggle mightily to use my walker, since I cannot put the weight through my hands. I struggle the same with trying to stand up and sit down, since I am forced to put the weight through my hands and arms, but they can't take it. They did controlled burns nearby for 4 days that filled my apartment with smoke. That was a sensitizing event for my chemical sensitivity. There were other sensitizing events after that. During December, my sensitivity to fragrances worsened greatly, eliminating even my bedroom as a safe space. And even the new, very expensive air purifiers stopped protecting me and started exacerbating my problems, leaving me defenseless. So fragrance exposure is daily and severe, causing complete agony and more agitation and insomnia. Having to sleep in a respirator. The severe trigeminal pain and bladder pain are constant now with this constant exposure to fragrance. Worsened insomnia. Having to air out the apartment with frigid air whenever possible, just to be able to tolerate the space for a few hours.

Weight returned to its lowest point. (Jan. 2024)

My toes are beginning to atrophy, and are barely attached internally. They offer no resistance to bending in any direction and hyperextend at rest. (Jan. 2024)

I'm sure I'm still missing plenty of significant issues. But I figured I would write them down while reflecting on the joys of the year.

None of my pre-existing diagnoses explain large parts of this year. I haven't had medical care or testing in years. I finally have medical conditions that are blatantly obvious and glaringly visible. Although so much of it remains invisible, like the horrific pain due to fragrances and the fragrances themselves, since I react to levels that others cannot detect. There is no pre-existing explanation for the musculoskeletal breakdown. Not for the cachexia and the massive atrophy and the shooting pain through my bones and progressively restricted movement. The EDS plus the arthritis plus the atrophy? But why the atrophy? All because of MCAS-induced malnutrition? The bulk of the atrophy happened before any change in diet became necessary. But why the bone pain preventing use of my limbs? And grotesque deformations.

I did have a batch of blood work done (at home) that showed significant malnutrition, severe anemia, many severe deficiencies, but also extremely high markers of inflammation, reflecting the inflammatory process taking place in my body. Just not being able to identify it specifically. Likely a progressive arthritic condition and a variable neuromuscular condition.

I began the year living independently in my own way, and ended up relying greatly on my caregivers for practically everything. Gustavo, Mom, and Andy. And they are strained very thin to say the least. I owe my life and my every day to them, and the pressure of that dependence is extremely high. As well as imposing a very strict lifestyle. It is an enormous burden as well as a balancing act that is not sustainable.

Very brief list of things I cannot do independently:

Get in and out of bed

Move in bed (arm movement varies)

Brush my hair, put in a barrette or a ponytail

Touch my left ear or the left side of my face or head

Touch my right chest

Wipe my armpits/apply deodorant

Change my clothes, any of them

Squeeze toothpaste onto my toothbrush

Turn twisting light switches

Take a sweater on or off to adjust for temperature

Zip most sweaters

Write

Type

Hold up my phone and type into it

Plug things into chargers

Plug and unplug headphones

Hold my phone with one hand

Hug

Cuddle

Be touched mostly

Early in the year, we were trying to find a safe home to live in, but the house shopping process progressed my condition in just a few trips out of the house. And it also became clear that there is no such thing as a fragrance-free house, just like there are no fragrance free caregivers. And with that, my fate was sealed of never leaving this apartment. There is no hope for escape.

I did get brave and try treatment this year. It failed spectacularly, and I never recovered.

My condition is clearly progressive and degenerative. The heat and intense fragrances of summer leading to almost no sleep or rest was disastrous. As is the loss of access to clean enough air and no safe space. Many of these problems are irreversible, too far gone. The future is extremely bleak, and it would have been better off if I hadn't survived this year. Better off for everyone, as my care is too much. And even as the need for care increases, the access to care does not. And because no one should have to suffer this much agony. And all without access to medical care or medications that could relieve my symptoms or treat anything.

Another loss was my ability to communicate much. My days are packed with a strict schedule of survival. And with enduring the unendurable. There were months where I suffered hours of prolonged unconsciousness. But then the insomnia came, and it's even worse to not be able to rest. But there's just no time and no cognitive and emotional energy to have simple conversations most days. My last day of Spanish class was the day I was diagnosed with Covid. I'm bilingual now. But I really stopped being able to communicate with anyone outside of my inner circle after that. I'm really not up for phone calls barely at all. Obviously, I stopped blogging. I've still been journaling with voice to text, but I don't publish it anymore. I have my reasons.

But I know I have had some very loyal and supportive readers and friends for so many years who deserve to know about my massive decline. So I am posting this so you know what's up. Sorry if there are typos.

Photos are mostly legs and hands, because the rest involve my bare, skeletal, spotted torso.