Friday, March 5, 2021


I'm hoping to make this a quick entry, since it's 3 in the morning. My days and nights are pretty fully reversed now. I'm typically in bed from 5:00 AM until 2:00 PM. Always trying to do better, but being able to get quality sleep while I'm there is what really matters.

I'm still having the awful acid symptoms forcing me to stay upright during the overnight hours. And this is even after decreasing my food intake (and losing a few hard-won pounds). And I still have the final wean off of the Omeprazole to come. With such severe acid, I just haven't been able to get myself to start the next wean. I don't know if my body needs more time, or I just have to accept the erosion of my esophagus. Overnight, I'm also just awake. It's when my body wants to be awake. At least for now, I'm often sleeping pretty well. Although lately, so many things have been trying to steal my calm.

The winter has had its challenges, but honestly, it's been such a huge relief to have a continued break from the laundry and cooking fumes that tortured me for half of last year. And the cooler temperature is hard on my feet with Raynaud's, and it can be hard on my body pain, but it is so amazing for keeping all fumes from seeping into our apartment. It's truly been amazing. I don't know how much of it is that the neighboring apartment is still empty, from what I can tell.

I have struggled with body pain a lot, primarily my feet and knees. My mobility is so greatly reduced. Pain becomes so severe after such a short time on my feet, and it takes a long time to recover. Sometimes the pain is enough to keep me up at night. There is really no way to alleviate it. Only force me to spend even less time mobile.

The only reason I can be on my feet at all is a magical combination of a particular brand of compressive knee sleeve + my expensive custom insoles + my tolerable brand of sneakers. Of course, with such particular needs, there's bound to be a problem. So, Futuro discontinued my knee sleeve JUST in the size extra small, which is the only one that comes close to providing enough compression to my skeletal chicken legs. I have seriously purchased at least 40 of these knee sleeves over the last decade. I can't use neoprene, so it's been a challenge to find anything that comes even close. I'm still using the ones that I've got, but they are starting to wear out, and I won't be able to replace them.

On top of that, my particular sneakers (Saucony Cohesion 10) have been replaced with newer models that do not support my feet the same way. I have seriously stocked up (and continue to stock up) on these shoes. I have spent hundreds of dollars getting myself a decent supply, so at least this problem can be deferred for another time. I've been wearing only these shoes for every step I take for so many years. They also wear out fairly quickly. I guess they are only really supportive enough when they are new, since I take very few steps in a day. So I replace them pretty often. The newer models (Cohesion 11, 12, and 13) cause a huge increase in foot pain, to the point that I would require an indoor wheelchair (and accessible housing) without them.

So, I have had some troubles, but still relative peace. My body just needs to have a temper tantrum about something. Foot and knee pain are not new for me, but this new progression in severity seems to be the current temper tantrum (outside of the usual, of course).

So all of that feels pretty foreboding. Just knowing my mobility is reduced so much. I've had a wheelchair since I was 19, but I've never used it inside my home. I've always had at least that level of mobility.

I have had the usual challenges accessing my body's very particular food and medicine needs. Trader Joe's has not been reliably stocking my quinoa. And Costco seems to forget every month to order the specific manufacturer that my doctor orders for me for at least one of my prescriptions. Although I am still so grateful to them for being the only pharmacy around willing to special order these brands. They could stop at any time, and I would be completely screwed. I'm so close to being off meds, but I still completely depend on them for sleep. And unfortunately, like every other freaking thing, my body is extremely particular. I have found the one tolerated brand of each med, and I cannot tolerate any changes.

However, I have made some small gains...if you can call it that...with food. I think I am tolerating oat milk (baked) better than almond milk. It's been an ongoing experiment, so I can update more soon. The other food I was able to eat some of without much repercussion was artichoke hearts. I don't enjoy the frozen/microwaved/unseasoned flavor. I've actually never eaten them before. But it is something different I can eat in small amounts some days. I still really want to try the puffed millet cereal as well. Although it doesn't seem I can increase the amount that I eat, only perhaps the variety.

BUT...all of this freedom to do tiny experiments will disappear shortly. Sorry for some repetition here. The rest of this entry is a recent 3 AM diary entry, detailing all of my ongoing worries:

"The melting of the snow spells the beginning of my doom. Each drip brings me closer. The return of invading fumes every day--no safety in or out. Add to that the upcoming "return to normal" for the rest of the world as vaccinations thankfully become available. My world will get much darker and lonelier again. I have been so lucky to have my husband around for this last year. I treasure his presence even when we are off in our own worlds. His companionship day to day now feels like a lifeline. How did I ever manage without it? He is away on a weekend getaway right now, so I am getting the reminder of how desolate that extra level of isolation feels.

But the spring weather brings with it more migraines and also my doom. Nowhere to run. Safety will slip away. No more regaining foods or weight. No more trials--you can't make sense of them when you are under siege constantly. Any sense of security will disappear. The world more treacherous. I cannot bear it again. It tried to kill me before. If I have to go through it again, it better succeed this time.

So, we are starting the seemingly insurmountable challenge of finding a safe apartment. The search brings new possibility but also new exposures, new tests of tolerance, so many more opportunities for disappointment and feeling even more permanently trapped. I feel these days of relative safety slipping away. I have not put myself in compromising situations for a long time. I haven't been on a car ride in over a year. I simply haven't left the property. I've barely even stepped outside, to be honest.

I have to remember that it not only could always get worse, it always has gotten worse. So whether I stay in this apartment through this summer or I attempt to move to a new place, either situation could lead to further progression. There is no good answer. There is no perfect solution. It feels inevitable that a new tipping point is coming. A new time of crisis that pushes me further down this road of suffering. So I just have to be prepared to accept worse and hope that I can learn to tolerate it, whatever the situation. But I also somehow have to protect myself from getting trapped in a situation without the hope of ever finding a new calm. (Like if I had been forced to live in the apartment with the varnish fumes back in 2014. That day of anaphylaxis was the beginning of my constant trigeminal pain and the escalation of my sensitivities.) I cannot get to a place where I truly have nowhere to go that is even safe some of the time. At least I have that here, and part of me believes that I should just accept that as good enough. I don't want this to be a situation where I took for granted what I used to have and then lost it, as I have done so many times before. I cannot take this home of part-time safety for granted.

How on earth will I accept signing a lease on a new apartment if it has fragrance in it? How am I supposed to know if a place could be made safe with cleaning and the hydroxyl generator and air purifying and maybe some type of low-chem sealers? It will be such a massive investment of money and energy and time, especially for Gustavo. I just can't put him through that and end up with nothing. I am scared. Scared of making the wrong choice. My well-being, my sanity, my shelter, and quite possibly my life could depend on this.

Every mention of moving or the leasing office or even of the spring weather or vaccines brings the feeling of dread with it.

There is also so much dread around the worsening pain in my feet and knees. Standing and walking are becoming exquisitely painful. Never this bad in my life. I don't know how to stay mobile, even just to get around a small apartment. I can't lose my mobility fully. Small apartments are not wheelchair accessible (nor are most houses). And I would lose what little muscle I have left.

It is unnerving how the tiniest change can domino into disaster so easily. My body is so dependent on nothing upsetting the ridiculously delicate balance. A balancing act that I can't maintain. I can never appease this garbage body. And yet I have to devote all my energy into trying to do just that.

All of this is so foreboding. I have lost my lovely calm that I had so much of the last few months. It's all just building, stealing my peace."

So, we do have an apartment we are planning to look at. The leasing office has not been nearly as accommodating or helpful as I had hoped. We have actually been left in a lurch at the moment about if we will even be visiting, but if we do, the first apartment to visit will be this week. I don't want to talk about it. I don't want to think about it. I certainly don't want to make another phone call about it! My request to visit the apartment before it is painted and cleaned did not go over well. And even if we do manage that, we still haven't convinced them not to paint and clean the very next day. There will be exactly a one-day window in which we would be allowed to visit after an apartment is vacated (if they decide to allow this at all). But I still have no idea how I will know if an apartment is able to be remediated or not. They are not able to tell us what products the former tenants used (plug-ins, spray fresheners, fabric softener, essential oil diffusers). Those are immediate disqualifiers for me. They cannot be washed away. This could be a verrrrrrry long search.

There are benefits to the apartment complex we are considering. They are LEED certified. Specifically, they have no shared ventilation between units, and they have positive pressure filtration. Those are both very good for indoor air quality. But they can't overcome the stickiness of pro-fragrances (!divAbstract). Think Downy Unstoppables. And everything Glade. Febreze. Gain. These chemicals have been made to be extended release and remain for many months, usually years. They cannot simply be washed away or aired out. I know I've had to get rid of every piece of cloth I owned before going fragrance free. The fragrance simply doesn't wash out. And that is just fragrances! I have trouble with all new appliances and new furniture. Any repair done to the apartment introduces a new chemical onslaught. There are almost always safer product alternatives, but they are never used. There is so much you have zero control over in an apartment, including the previous tenants and the neighbors. They have the right to live their life and use all of these legal air quality hazards. They certainly have a right to cook in their own home. There is no way of knowing in a brief visit how much of a problem any of it will be.

Anywhere that is not this apartment on a good day is foreign air to my body. It will probably react to anything. I will certainly react to the car ride. I don't want to stir up my world when I like it how it is right now. Not being attacked from all sides constantly.

I just can't prepare. Only deal with it as it comes. And try to save the doom for another day. And actually go to sleep before sunrise tonight.

Thank you for reading this anxiety-driven blather. It's a lot. I just want things to stay the same, miserable as they often are. I am aware that this is as good as it gets for me at this stage in my life. I just want my husband's company and temperature control and no chemical onslaughts bringing misery. I want the chance to accomplish something beyond mere survival in a day. I just don't want anything to change. The way things are right now is what is keeping me safe. The doom is often at the back of my mind. It has come out a few times. I am hoping that by writing it down, I can think about it less and just enjoy the safer time while I have it. And I have been and will continue to enjoy every moment of less suffering.