Monday, May 6, 2019

6 weeks later, and so much lost

Well, I last posted six weeks ago after enduring many doctors' appointments and various chemical exposures. I believe there was one more exposure after that, which was a severe reaction to a dusting spray called Endust Free. It took some time to figure out what was wrong since it had no obvious scent, but I knew that something was wrong immediately. My reaction included feeling very cold and then burning all over, exploding head feeling, burning eyes, agitation, insomnia, pounding heart, and full body vibration. These symptoms lasted for two full days and nights. So that was March for me, and I have not been the same since.

Starting middle of March, when I visited with my brother, I developed new food reactions. It quickly escalated into a crisis that I have not gotten out of. I had nine safe foods prior to this: organic toasted oats cereal, almond milk, rice cakes, peanut butter, quinoa, carrots, broccoli, potato chips, and butter. I first developed a reaction to peanut butter. Soon after ingestion, I developed a runny nose, abdominal bloating and pain, a pounding heart with heart rate elevation followed by presyncope and reduced consciousness for up to three hours. Following the reduced consciousness, I developed facial burning, agitation, flushing, and a feverish feeling. The symptoms would pass, but they seemed too severe to continue eating peanut butter. In addition to the new food reaction, my baseline state also worsened. The burning inside got so bad it was reaching a level 8 late at night every night. My scent reactions began happening daily. My facial pain was reaching a level 8 most days as well.

So, my mast cells were constantly degranulating, and my condition was deteriorating. I was miserable. But I was also starving without peanut butter. I immediately started doing food trials, trying to find a replacement for peanut butter. I needed to replace the fat, protein, and calories in my diet since so much of it came from peanut butter! It was an absolutely key part of my diet and key to my well-being. I was able to digest it without much trouble, and I was able to get a good amount of calories in without causing too much fullness or GI distress. So, I tried similar foods first.

I tried Sunbutter the first day. It's like peanut butter, but it's made from sunflower seeds. This gave me bloating, nausea, and worst of all, the burning inside for 8 hours. Plus, I felt agitated and couldn't sleep. I also had vertigo and trigeminal pain, but that is most likely attributed to the weather. (It can be really hard to sort out!)

The next day, I tried just butter on my rice cakes. At least I would get fat and calories, right? And I could figure out a protein replacement later. Well, that actually went terribly, despite previously tolerating (much smaller amounts of) butter. I got burning inside for a few hours, but I also got really bloated and developed a very raw mouth. My whole mouth felt like it had been sandpapered. In the following days, I tried returning to my previous amount of butter, just melted into my veggies, but I got the raw mouth every time. So that's how I lost my next food!

I then tried a scrambled egg for two days. That was one of the last foods that I lost before my current diet, so I knew there was a chance of tolerating it. Unfortunately, it caused major bloating and itching, and the itching persisted overnight, messing with my sleep again.

Finally, I tried almond butter. This was the worst reaction yet, probably because my body was already on high alert from all the reactions. (I know it's super weird that I can drink almond milk, but please don't tell my body they're made from the same thing. Maybe it won't notice!) Anyway, I developed burning lips and crotch, runny/itchy nose, and I was awake until 5:00 AM with insomnia, agitation, and heart pounding.

At that point, my body was in full-on crisis mode. I couldn't handle anything. Just eating and drinking and moving made me worse. Every symptom I have went into high gear. I was suffering from agitation, burning pain, migraine pain, insomnia, pounding heart all night, and all the rest. So on April 1, I gave in and just started eating my dinner foods for lunch and dinner. I no longer had post-lunch symptoms besides some trouble digesting "real" food so early in the day. Basically, this diet increased my dietary fiber, and that was too much for my system to handle. So, I had to learn to puree my vegetables to try to ease the burden.

I also tried a peanut butter desensitization, eating just a teaspoon a day, every other day of homemade peanut butter. But when I escalated to two teaspoons in a day, symptoms were worse than ever before, so the desensitization not only failed, but actually made my sensitivity worse.

So I've been sticking with the food plan that got me out of full-on crisis for now. My safe foods are now: toasted oats cereal, almond milk, quinoa, pureed carrots and broccoli, and potato chips. I am hungry all the time. I dream of food. In just the first week, I lost two inches around my chest and my hips. A month later, I have lost three inches all around. My clothes hang off of me. I am decidedly underweight with an unhealthy BMI. (Although my stomach is often bloated, so it can be hard to see how bad it is.) And I don't know how to fix it. I have a few foods to try (brown rice protein powder, coconut oil, coconut butter, and hard-boiled eggs). But I am not stable enough to try anything new.

One week, my brand of almond milk wasn't available, so my husband bought my second choice, which has always been fine for me. Well guess what? Now, my body will not tolerate it. The only difference in ingredients seems to be sunflower lecithin, so it seems clear that I can no longer tolerate anything sunflower. It seems like I start reacting if I have too much of any one thing sometimes. But this just shows that I am still declining.

Plus, with the temperature rising and the neighbors starting grilling season, I am reacting constantly. I am often not safe anywhere. All it takes is one neighbor on the block grilling, and that tiny amount of smoke seeping into the house to ruin my week. Yes, week. Not day. Week. We're working on sealing up doors better, but nothing is perfect. And all scents are amplified in the heat. The smell of the asphalt in the parking lot, the smell of laundry that seeps in from my condo's hallway. Everything is stronger and suddenly a huge problem again. And this is not even dealing with air conditioning yet, which makes my condo mostly unlivable because whenever there is smoke, it blows it inside. Not to mention the bug bites that are coming to ruin more weeks of my life.

I also have a whole saga going on with prescriptions right now. Two of my three pharmacies, the ones that special order specific manufacturers for me, have told me that they will no longer be allowed to do that. It doesn't matter if my doctor specifies the medically-required manufacturer, somehow, because they are generics, not brand name drugs. So in any given month, probably sooner rather than later, I will be unable to refill my prescriptions. I have sought out other pharmacies and have leads on a few that might be more willing to order them. But I am totally at their mercy, and I have no idea when this will happen until I try to refill. So each medication could become a crisis of its own. I am totally powerless here.

In addition, the medicine that Dr. Tobin prescribed, Zyflo, was not available for compounding. Plus, I haven't been stable. So I have a bottle of the brand name stuff sitting here, but I haven't been able to try it. This is a $4,000 bottle of medicine. I got it for cheaper, but not cheap enough to actually refill monthly. But it really doesn't matter. I don't know when it will matter because I have no idea when I will try it. It seems like food trials are more important, but I would need to be less reactive first.

I also just seriously cannot tolerate more symptoms above those I'm experiencing from the crazy weather changes and barometer messing with me. The pain in my head and face and joints has been unbearable. So I certainly can't risk making anything worse. My pain reaches an 8 most days, and my digestion has not normalized. I am usually bloated and feeling like my lower abdomen is stuffed while my stomach is suffering from intense hunger.

So for now, I seem to keep shrinking away and feeling like I'm starving and unable to try to fix it at all. All I can do is survive day by day.

Wilma is definitely still struggling, but we have her on a few new supplements that seem to be helping with her nighttime psychosis from dementia. The biggest help has been CBD, which is also helping her appetite. She still looks skeletal, but that should change if her appetite stays up. This symptom of hers is definitely interfering with my sleep, which doesn't help anything. But hopefully, we'll keep finding ways to ease her troubles.

I'm sure so much more has happened, but I am not hypomanic how I was last time I wrote, so I don't have racing thoughts propelling me forward.

So, a few assorted thoughts, and then I'll go.

Someone in my support group asked what you wish people new about your chemical sensitivities. My answer was this: "My biggest one is that the level of chemical sensitivity can be so much more than you could imagine. The amount of a trigger can be undetectable but still debilitating. The other thing is that I don't just suffer while being exposed to a trigger. I can suffer for weeks. And if it's bad enough, I may never get back to my previous baseline. I may be permanently damaged by some brief exposure."

Then, I wrote this about being so reluctant to try anything new: "As long as I avoid ALL triggers: food, environments, medicines, exertion, people; as long as I stick to my 3 safe people and my 7 safe foods and my 2 safe-ish home environments, I can just barely tolerate being alive. But every time I leave the house (including going to doctors), or try a new food or a new medicine or visit with a new person, I end up triggering a progression of my disease that I often don't recover from. I lose safe foods and medicines and react more to my environment. So I am officially terrified to change anything for fear that my daily existence could get even worse. I have just seen myself get worse so many times from so many things, and I cannot bear the thought of existing any worse than this. I am so afraid to rock the boat."

Finally, there has been a lot of talk lately about "brain retraining" and stuff like that in mast cell and chemical sensitivity groups. It is thankfully a banned topic in some of them. It's basically teaching your body not to react to triggers through reprogramming techniques. I truly do not believe in this approach to my condition for so many reasons. First, exposing myself to triggers would just allow me to progress even further by exposing myself to danger. Even in small doses, my reactions tend to progress with each exposure. Symptoms of anxiety related to exposures could improve. The propaganda around these often very expensive programs is really huge, so there are miracle cure stories out there, plenty of them.

For me personally, I don't believe in this treatment. I am thankful that I don't suffer much anxiety on a day-to-day basis. I'm in too much of a fog to feel anxious. I even forget that I have tried a new food or a new medicine until I am already reacting. So I don't see how my mind could be creating that response. I also react to unknown triggers so much of the time and have to figure out what the trigger could be. Then later, I identify it, and it all makes sense. And these are reliable reactions, replicable. I didn't even know there was a trigger, so I know my mind didn't create that reaction. It also makes perfect sense to feel anxious when returning to a situation that has caused immense suffering in the past. That's normal. And I am pretty good at taming my nerves and just taking things as they come. Many years ago, early on in illness, I questioned myself a lot, basically blaming myself for my symptoms...because doctors didn't know what was wrong, and they blamed me. I was young and trusting and didn't know better, but they still damaged my ability to trust. It was medical gaslighting for sure. It has taken many years to get to the point of trusting myself again. I now know to take my body's cues seriously. I do get bouts of anxiety out of nowhere, but I know that is a sign of a reaction starting, not a sign that I'm imagining a reaction.

I am very pro-mental health care by licensed professionals. I have been treated for depression for most of my life. I previously suffered generalized anxiety, and I am so grateful to not currently have that burden. But I believe in medicine, and I believe in therapy. What I don't believe in is programs made up by non-professionals and sold as snake oil to the masses of suffering people. If someone truly believes that their anxiety is the driving force, and their thoughts are causing their symptoms, then they should seek out treatment for anxiety. And maybe these programs that involve walking in circles while repeating mantras and reciting comforting statements to yourself would be helpful for them. Who's to say? Anyone who is helped, I am so glad for them. But I don't approve of the way it is marketed and sold as a cure to all that ails you.

My mental health is stable. Just ask my actual doctors. They know my symptoms are real and driven by mast cells. I finally have ample laboratory evidence proving it. And I have expert doctors who attest to my conditions. So thankful to have reached the point that I have real, tangible evidence explaining every crazy thing my body puts me through. Obviously, I wish there were more solutions, but explanations are a good start. I even had my doctor recently write me a note to get out of jury duty, declaring that I am housebound due to illness. This is very real, and no one who knows me questions my sanity, thankfully. I feel so bad for those that are still going through the process of diagnosis and still seeking explanations and validation and being accused of faking it or being crazy. It happens way more than people realize. And I find that this kind of treatment is just another angle at toxic positivity and magical thinking. (Here's a great article on that issue:

So, given all that I've been through, I don't have any doctor's appointments scheduled currently. I will need to keep seeing a few doctors annually, but I will avoid any more than that whenever possible. Only this degree of extreme isolation seems safe for me at this point. Very unfortunately, I need my annual exam with my gynecologist this month if I want to continue birth control pills that treat my PMDD and hormonal reactions. It's unavoidable, and very exposed, and it will make me very sick. I just hope I don't gain any new symptoms or lose any more foods. Have I mentioned? I am so hungry!!! But it is a difficult appointment because it is a scented office, and my skin will all be exposed. Skin exposure is so huge. A respirator can't help you with this. A recent study came out showing that most of carcinogen absorption from barbecue smoke actually comes through the skin, not through inhalation as previously assumed. Here's an article explaining that:

I believe that this skin absorption thing can explain many chemical reactions, not just smoke. Your skin absorbs everything in the air, and then it is processed by your body and ends up in your bloodstream and your urine. That's how you can react even when wearing a respirator. (Although I still swear that plenty of smells get through my industrial respirator. Strong perfume is the main one.)

I am so sorry for the disjointed nature of this post. You can see how confusing it can be to live inside my brain. I hope you are all having a good spring. Stay safe. Don't start too many fires 😊. And if anyone knows how I can fill the Game of Thrones-sized hole that will show up in my life in two weeks, please let me know!