Thursday, December 15, 2016

Ready for my bubble now

I don't want this post to sound as negative as the last one. So, I'll include the positives first:

Cymbalta withdrawal is lessening, I think. The biggest thing that has stopped is the jolts/shocks/startles/zaps. Whatever you call them, they are miserable, and they are mostly gone.

In addition to this, I have had a lot less days with classic migraines. There is a chance my elevated serotonin levels were contributing to the frequency of my migraines. It's just a theory, but I'm holding onto hope that that's really what's happening. Of course, it's hard to be hopeful when I currently have a migraine with a pretty high pain level.

Unfortunately, I really don't have anything else good to report. Despite the lack of migraines, my facial pain has still been severe many days, so not really any better than a migraine. Maybe worse, because I can't treat it. (Well, I try Tylenol + Benadryl, but it is hard to tell if it does much. Maybe, it lessens the pain by 1-2 points on the pain scale.

What has progressed even further is my chemical reactions. It didn't feel like that would be possible, but rationally, I know mast cell disease can progress much, much further. I am aware of people that become allergic to water, anything that has ever touched plastic, and other people's body odor. So I knew it was possible to be more sensitive. I just didn't think it would be me, you know? Thank goodness, I'm not that far along, but I see the progression happening quickly. Where smaller and smaller exposures trigger more extreme and longer lasting reactions. Where it feels like you're always basically in a state of reaction to something.

My fear is becoming confined to a room, a "safe space," and having very few people that do not trigger reactions allowed in the room with me. I'm getting closer and closer to this every day.

Mast cell disease is often mild until exacerbated by trauma or stress. I have had symptoms of mast cell disease probably since birth. I had a major reaction to breast milk as an infant, as well as dairy milk. In high school, I developed what was called "asthma" to exercise and cigarettes. Now, I understand this was most likely anaphylaxis from a mast cell reaction. It makes so much more sense, looking back, since the inhalers never helped, but the shot of epinephrine from the EMTs always did. Then, I have gotten worse after each major surgery or trauma in my life. I developed new chemical sensitivities over time. This Cymbalta withdrawal is just the most recent of the many stressors on my body that seems to have progressed my mast cell disease.

I have major reactions to the smell of cooking now. I try to boil and steam most things. But it's hard to live with me due to this restriction. (It's also hard to be me-because I enjoy cooking and baking and making things taste good!) We also don't have a hood vent over our range, so there is no easy way to ventilate the kitchen.

Exposures that would have only caused me temporary discomfort previously now cause me major reactions that are multi-systemic. Example: I smell some scented laundry detergent for a few seconds, I end up having a full day of itchiness, sinus pressure, vertigo, facial pain, and diarrhea. I also sometimes get swelling in my eyes and lips, usually not right away, but by the next morning.

I had a crazy reaction to being in Whole Foods for less than three minutes. The smell of essential oils was very strong in the air. Ever since then, I cannot tolerate even the tiniest exposure to a scented oil. My head starts spinning instantly, followed by my sinuses filling and all the rest.

Beyond the reaction itself, every single exposure seems to lead to greater sensitivity. The only way to avoid the ever-increasing hypersensitivity is strict avoidance of anything that triggers a response. The more recent your last reaction, the more primed you are to react to the next tiny exposure. Your tolerance lowers, and your mast cells are on edge, ready to burst their contents all over again.

I now have multiple unscented products that cause severe reactions, including unscented Febreze and unscented fabric softeners. And sometimes, it's a mystery trigger. I know there is something, probably on someone's clothing, that is triggering me, but I don't know what it is. That's when I guess it's one of these unscented products.

Currently, I've been living at my mom's house again for almost a month. First, she was helping me through the withdrawal. But I tried to move back home, and ran into a new problem. I'm allergic to our heat. We have baseboard radiators, and I finally figured out that these were triggering a reaction, after spending 2 1/2 days basically manic. So, my husband and I spent a night doing a major cleaning. Over the year(s), the radiators collect a disgusting amount of dust. So, every time the heat cycles on, the dust gets burned off into the air. Even after a thorough cleaning, there's still a distinct smell of burning dust when the heat is on. So for now, we're running the heaters on high while I stay at mom's house to try to get rid of the rest of the dust.

I am completely exhausted and pretty terrified at what this progression means for my life.

I am hoping to be able to move back home soon, but who knows when I'll be able to tolerate it?

I also have no idea if the withdrawal is over. Is my current state of depression with frequent crying just my personality now? Is it just my remaining mood disorder, now that I am mostly untreated?

I'm still trying to figure out what to do about a new psychiatrist. My current one will no longer take my insurance, and I've also now had a major reaction to being in his office. I'm looking into doctors that offer phone and Skype appointments, but my insurance won't cover any of them. I'm not sure there is much of an option though, and my mental health does need some management, even if it can't come from SSRIs or SNRIs anymore.

I don't know how I can go into another doctor's office ever again at this point. Which is a pretty dangerous place for me to be in.

I'm going to share a few embarrassing pictures of mast cell reactions. I don't getting the usual flushing, but I do have allergic edema, with swelling of my face, sometimes swelling my eyes shut. It's not as severe as some edema, but it is a visible sign of my mast cell reaction and my facial pain.

I honestly have a ton more to write about in my head, but I'll save it for the next post. Thank you for reading and for the support. I'm so sorry I haven't gotten back to people that have reached out. I want to reach out, but I fear that I have nothing to say that isn't about my illness. I think I have nothing to contribute to the world but my illness experience. I barely even exist outside of my illness experience lately. I'll try to do better. But I am almost always either in a crisis or in a total fog, recovering from the last crisis. Maybe days like today, it's a little of both. Dealing with migraine pain that started last night, but also in a total fog.