I'm Still Here...

Well, I haven't written since June. I also basically stopped taking notes on my health, because there are no more triggers to figure out at this time, and I've got a pretty good record of my triggers and reactions if needed for future appointments. I haven't had any major doctor's appointments (just maintenance appointments with my psychiatrist). I also haven't really trialed any new medicines because I'm just trying to live my life. You know what I mean? Just trying to lay low, get by, and avoid making my mast cells angry. I just want to enjoy the calm and survive the storms.

Of course, life has worked against me left and right, as expected at this point. And a million things that seem like they couldn't go wrong or seem like they couldn't cause a problem are constantly happening. I have not been stable, but I've been stably unstable, if that makes sense.

I've still been working my job in transcription since February. I still make a mere pittance, but my typing skills are pretty awesome at this point (when my hands and wrists don't hurt too much). I mostly like the job, although I often feel that I am using up all of my energy for the day to earn about $4 an hour. I work 3-4 days a week for 3-6 hours each day. So anywhere from 10-20 hours a week, basically. It's something I can do and do well (I have perfect metrics, meaning the scores on my graded projects, which really satisfies the tiny part of me left with perfectionistic tendencies.). It's also fantastic to be able to work literally whenever I feel like it. I do all my work in bed, propped up by a bunch of pillows to try to make it ergonomic and not injure anything. But in general, I have increased hand and spine pain from working.

So, one thing that has gotten trickier with working is my sleep schedule. My body really, really hates normal sleeping hours. It's pointless to even try to go to bed before midnight or wake up before 11:00. But with many good jobs being available late at night, I'm often working until midnight, and it takes me another couple of hours to wind down after that. So, I'm often up until 2:00 or 3:00 AM. I get out of bed around noon most of the time. I never sleep through the night. Not in years. I always wish I could improve these hours so I wouldn't be so late-shifted, but whenever I try, I either simply can't sleep or I have terrible sleep quality, and I don't end up getting up any earlier. It's really annoying. I've also been experimenting with reducing the medicines that help me sleep to try to improve daytime wakefulness, but it's been pretty hit or miss. I should probably just stick with what's been working to get me to sleep because if I don't sleep well enough, my daytime wakefulness is not any better.

So, this leads to the brain fog problem. I have many different levels of brain fog. Sometimes, I just have a little trouble following a conversation or a TV show. Sometimes, I have trouble producing words and sentences. Sometimes, I have trouble producing thoughts. And sometimes, I am in a stupor, close to unconsciousness quite frequently. I have trouble responding to my surroundings with speech or movement. I experience all of these levels on a near-daily basis. There is not a day without cognitive impairment. It used to be pretty predictably terrible in the morning and improving in the evening, but that doesn't seem to be strictly true anymore. I can get lost in a fog throughout the day. They are some pretty serious cognitive deficits. My face is often completely expressionless, and it often takes a ton of effort to change that. It feels like I'm wearing a mask.My eyelids feel heavy, and my cheeks feel stiff. My memory is often a huge blur, so it's hard for me to even come up with words to say about what's been going on in my life. I honestly don't remember a lot of it. When people ask me how I'm doing, it is really hard to figure out an answer a lot of the time.

However, I do have a newer symptom which may be a result of my extended social isolation. When I do have a conversation with someone that I haven't talked to in a while, I may be so out of it that I stay in a fog, but I may also get over-stimulated. It's a really frustrating thing, because I crave interaction, but apparently, it is sometimes too much for me to handle, and I become basically hypomanic with pressured speech, and I feel overly-excited. This is followed by a crash later on. I really wish my body could just maintain some kind of homeostasis instead of the highs and lows (mostly lows at this time).

The big life event that has happened since I last wrote was the death of my Granddad. It was very stressful and distressing. I am very grateful that an outdoor meeting was possible and arranged for me to say goodbye to him. I attended his funeral in an unorthodox way, for sure. I sat in the car watching the service over Skype on my phone. It was a little ridiculous, but better than missing out. I also didn't have to feel bad about disturbing the service with my audible sobs. I came into the church, wearing my respirator, at the very end of the service. I just needed to hug my family. It was just so deeply sad, and I needed to be there. So, I was inside the church for a short, but meaningful time. I definitely suffered for it. I developed a full-body tremor when I got back to my car. I waited for another hour or more before leaving. I was incapacitated for the rest of the day, and suffered a reaction for several days afterward. Thankfully, I was able to sleep through this reaction. (I never take sleep for granted!) But it involved a lot of pain, including trigeminal and body pain, lethargy, itching, digestive issues, burning, vertigo, and some fevers.

The season change has been good and bad. As soon as the oppressive heat ended, I noticed that the smells in our apartment (especially seeping cigarette smell) seem to have mostly vanished. I doubt the neighbors have changed, more that the air is cooler, so the smell is less intense. This is for a few reasons: smells are diffused more quickly in hot air, hot air can absorb more scent molecules than cold air, and humidity makes your sense of smell more effective. So all of that works against me in the summer months. I struggled so much when they resurfaced our parking lot. I couldn't be home at all. I became completely manic. But as soon as the air cooled down, I could no longer smell it from our condo window.

So, cool air is easier to deal with that way. Also, mold growth really slows down in the winter, so that's a big plus inside and out. It also helps that we don't have to rely on our wall unit A/C which blows in mostly unfiltered outside air. However, then we have winter problems to deal with. The dry air is killer on my eyes. My dry eye disease was pretty well-managed over the summer, just requiring a few applications of preservative-free eye gel a night. Now that the air is cooler and drier, and we're running the heat, I've already started getting eye abrasions again while I sleep, no matter how much eye gel I use. So, I have to carefully manage our indoor humidity, which can be tricky to avoid mold growth and spread. But I'm managing it. Season change is also very hard for my migraines and facial pain. I feel every barometric pressure change in my face and sometimes in my whole head. Too low, too high, too steep a change=increased pain. But now that I am not often exposed to fragrance for very long, the pain usually doesn't reach the unbearable level.

My girl, Wilma, has been having plenty of problems to keep my mind worrying, and not about myself. She's had more intestinal infections. She lost her appetite completely for a while. I had to hand-feed her meals. She's very, very skinny at this point. But she is eating again. She's on her second round of antibiotic treatment in three months. It helps so much with her appetite and her digestion. I wish she could just stay on it. Probiotics made specifically for dogs and recommended by her previous vet seem to make the problem worse, so we'll stick with what works. She is on a tiny, tiny dose of a very safe antibiotic, and everyone is much happier when she can digest properly.

Unfortunately, she is still dealing with the effects of dementia. We notice it worsening week by week. It also seems to progress every time her GI flares up. She has some really strange behaviors, including getting herself stuck in very strange places (like wedged behind the TV or between a dresser and the wall or under my bed). She also has developed extreme thirst and restlessness late at night and in the overnight hours. This can make it very difficult for me to sleep because my sleep is so delicate. Any little sound or movement, even while wearing my earplugs, will wake me up, and I don't fall back to sleep easily. So, we're managing as best we can and trying to keep her happy, comfortable, and safe. It's just getting harder to do when she puts herself in precarious situations!

I'm sure there's a million other things that I've forgotten, but the only other thing I can think of right now is upcoming appointments. I am seeing my current immunologist this week. I haven't seen her since February, I think, so it is good to maintain that relationship. She also prescribes one of my specially formulated medications. I don't really have a PCP right now, so it makes sense to keep seeing her, even though she has nothing new to offer me for mast cells. I also will be having a dreaded dentist appointment sometime this winter. I haven't been in 3 or 4 years due to scents and not being able to wear my respirator when I am in the office. I don't go inside any doctor's office without my respirator. And I will be in close contact with the hygienist and the dentist, so we are going to try our best to make it an unscented and very efficient appointment. But I will still be absolutely terrified of how severely I'll react. My last appointment led to a month-long migraine, so I am truly fearful for how much pain I will invoke.

In February, I will have two important appointments. I will have my yearly appointment with Dr. Barboi, my autonomic neurologist. I'm pretty sure he won't have anything new for me to try, but I need to remain his patient too. He's a man you want in your corner, for sure, and he understands my situation better than most, even if he can't do a lot to help my current state. Finally, the big news is that I got an appointment scheduled with a mast cell specialist in Chicago. I should really say that my mom got me the appointment, because my past trauma prevented me from being able to make that call myself, and I don't believe it would have happened without her help. I think it is so important that I see this doctor, but I have only a modicum of hope that there is anything else that can be done for me. Nonetheless, it is something I absolutely have to try, no matter what the chances are of improvement.

I think that's everything. I hope everyone reading this is having a nice November. Thank you for those that read and that care, after all this time. I am endlessly thankful for the support I have in my life. I know where I'd be without it, and it's not here.

Here's what I mean when I say I wear a respirator to go out. I mean an actual respirator. Those dinky little cloth carbon masks do nothing for me anymore. This gives me a few minutes before symptoms start, due to skin absorption. But wearing it avoids the worst of the trigeminal pain I get from every scent imaginable. I still end up with miserable symptoms for days after an exposure, but the suicide pain in my face is so much less, as long as I don't stay anywhere too long. It's better than nothing! But it doesn't give me my freedom.

Two years of isolation...so far

Well, a lot hasn't changed, which is mainly why I haven't written. But, I also started working a new job in February. I got hired as a freelance transcriptionist. The pay is very, very little. But I also work only as much as I am able when I am able, and I can do it in bed. I only take jobs when I feel able to do so, and if it seems too hard, I can bail within the first hour. It's a good setup. Amazingly, even when I am in too much of a fog to put together a coherent sentence, I'm able to do this job. It's something I can do on auto-pilot. I feel like I accomplish something, although working around my hand and wrist pain, trying to prevent repetitive strain injury is quite a challenge.

I've given up on my daily diary. But I have been tracking any major triggers.

The barometer changes and highs and lows still cause me a lot of trouble. Migraines are just the beginning. When the barometer is dropping the day before rain or storms, I am basically braindead all day. Severe brain fog and lethargy. Extremely slow thinking. And sometimes a horrific migraine.

I saw my autonomic neurologist on February 13. I wore my respirator, of course. But I still had a severe, three-day reaction that included headache and facial pain, nausea, burning, lack of appetite, diarrhea, vertigo, extreme emotionality, agitation, poor sleep, bladder pain, heartburn, stupor, palpitations, severe brain fog (unable to follow a TV show), and a massive migraine. And nothing too much came from the appointment. He believes I have Mastocytosis and not MCAS. But he doesn't think it's safe for me to have a bone marrow biopsy (and neither do I). I also really doubt it, due to my low tryptase levels. He thinks I should try Imatinib, which is a type of chemo. But no one would prescribe it for me without high tryptase levels or life-threatening symptoms. He thinks it might be a miracle for me, but I'm not sure I even want to try it unless I am having life-threatening symptoms.

March 5, I finally felt brave enough to trial something. I tried the mast cell stabilizing eye drops (Opticrom), and ended up with a corneal abrasion. I apparently react to the preservative called Benzalkonium Chloride. Stinks, because it's in all allergy eye drops and most nasal sprays. My eyes are a complete disaster without allergy eye drops. Blepharitis, blepharospasms, itching, burning. They cause me a lot of distress, in general. I do have a better preservative-free lubricating gel now, so that helps to prevent corneal abrasions. (Although the end of winter has helped, too, I'm sure.)

March 19-24, I put myself into accidental benzodiazepine withdrawal. I literally just forgot to put the pills in my pillcase. It was really dumb, needless suffering, and also a stark reminder of just how sick I will get if I can ever not access the one safe manufacturer I have for this medicine. It is the main reason I sleep most nights now. And sudden withdrawal is something I probably wouldn't come back from.

March 29, I guess I got brave again. I ate a third of a chicken breast with my dinner. I have nine safe foods. I was hoping that chicken would be safe. Unfortunately, it really sucked! I felt incredibly full (like just ate at an all-you-can-eat buffet kind of full) and had shortness of breath. I was up with a pounding heart all night. The next day, I had severe diarrhea. I guess I won't be trying that again. I'm stuck with my nine safe foods: Joe's O's, almond milk, rice cakes, peanut butter, quinoa, carrots, broccoli, potato chips, and butter. I am very grateful that I have enough safe foods to get by, but man, do I miss a lot of foods and variety!

Some time in early April, I was having an incredibly good few days. Unfortunately, those were the days I was scheduled to do the 24-hour urine collection to firm up my diagnosis of MCAS, which would allow me to see a more specialized doctor for treatment. And that test already has a very low rate of actually catching the elevated mediators in urine. It has really difficult handling instructions. And I know I did not manage to get each sample of urine chilled quickly enough. Plus, it is best done during a major reaction or flare. So it was no surprise that we did not find anything helpful from that test. It is majorly frustrating, though. Especially because I became highly reactive again the next day. I don't know how those days even happened. But they are long gone. I've been a mess since then.

April 23, I went to a doctor's office (annual with my gynecologist-wore my respirator, but the office was very scented). I experienced a big adrenaline rush followed by a crash. Severe exhaustion, lethargy, burning torso, major bloating, gastroparesis, presyncope, bladder pain, burning vulva, severe burning throughout torso (pain level 8), roof of mouth burning, chills, facial pain (level 6), and insomnia. The next day, I felt worse as the day progressed. I had diarrhea, burning with all food, flu-like body pain and chills, nausea, feeling hot and cold, burning in arms, ribcage, chest, and vulva.

May 15, I trialed Zyrtec tablets. Taking the tablet form could save me hundreds of dollars a year over the Liquid Gel form, but I wasn't sure if I tolerated it. The only way to know is to be a lab rat. So yet again, I waited until I had a relatively good day followed by a relatively good night. Then I sabotaged it with the trial. I didn't feel too terrible the day of, but that night, I only got four hours of sleep followed by many hours of heart pounding, hot and cold, and diarrhea. Another fail. And another drug that I can only tolerate one form of. Such a difficult place to be in. But at least this one is available OTC. For the three prescription medications that I require a particular brand, I am completely dependent upon the pharmacies for my access to the medicine and my resultant well-being. And they can change that access on a whim. I have no control, and I could lose any relative stability that I currently have if they choose to switch manufacturers.

May 20, my laptop practically died doing a Windows update. I took it to a local repair guy. Unsurprisingly, but still disappointingly, it came to me back scented on the 22nd. Some scent had absorbed into the wrist rests. I wiped it with alcohol swabs every hour and kept a fan on it for two days straight. Unfortunately, I still reacted majorly to it, even though I didn't get very close to it. I had massive facial pain and a feeling of sheer panic for 2.5 days straight. It was terrible. I was an absolute wreck. In addition, my laptop was not fixed. We had to bring it back to him. We told him in no uncertain terms that he would need to have no fragrance on his hands or wrists when he worked on my laptop. He assured us that he would wipe it down afterwards. Geez. People seriously have no clue. Like I didn't try that myself? I got the computer back a couple days later. I haven't been near it since. Mom and Andy worked hard to air it out outside in the sun and wipe it down well. I have no idea how it's working or how it smells. I am basically terrified of it right now. My hubby has been nice enough to let me use his laptop for my work. My computer has been completely wiped. I lost everything on it in the update. I lost several years worth of photos, because I'm apparently terrible at backing up data. But it is only three years old, so I really hope it still works. And even more so, I hope that I don't get sick the next time I use it.

In the meantime, on May 29, I decided to finally trial the Gastrocrom. I've been putting it off for a few reasons, but mostly because it is really the end of the line for my treatment. I have tried and failed everything else. I have even tried this medicine before, but that was back when I was on many medications that I reacted to, and I couldn't sort out my reactions yet. I've also progressed a lot since then. So, on the 29th, I mostly had that familiar burning in my torso. It wasn't too severe. I was a bit agitated at bedtime, but I managed to sleep okay.

On the 30th, I tried Gastrocrom again. (It's really a tiny dose I'm trialing. It's 1/4 of a vial. It is standard to take 8 vials a day, although some take up to 16. So if my foggy brain can do math, it's 1/32 of a standard daily dose. I have a long way to go on this titration, if I make it.) I again had evening burning and agitation. I slept, but not well.

On May 31st (today), I took the same dose for a third time. Today has been horrible. I've had diarrhea, hypotension, and many hours of stupor. It was a day for staring with mouth agape. Not able to formulate a thought. It was bad for about six hours. I also had horrible chest pain that was not a normal symptom for me.

So tonight, I got my ability to think back, although I had to cancel plans to move back to my apartment tonight, due to my inability to think or move. And it is hard not to worry. I just really need to tolerate this medicine. My current doctor has nothing else for me to try. And I don't have any other mast cell doctor to see at this time. There are doctors on my list, but they all have obstacles. The one at Rush won't see me without more laboratory evidence. The integrative one doesn't take insurance and seriously overcharges. One at Northwestern has mixed reviews. And others are out-of-state. But I don't know what the point would be when I don't qualify for any of the stronger treatments. (No chronic hives, no high IgE levels, no life-threatening symptoms that would make me eligible for chemo treatment, no high tryptase levels.) So I feel completely on my own. I haven't even been back to my immunologist since my urine testing, and I'm not scheduled to go back. I may as well keep trialing the Gastrocrom, because I know that she doesn't have anything else to offer me.

It is hard not to feel hopeless. And it is hard that everything depends on me tolerating this drug. 'Cause I'm not doing real great so far. The only thing is, it is not uncommon for people to originally get worse on this medication, and then feel better. And then feel worse again with every dose increase. That sounds horrible, because I have 32 dose increases to survive. And I will not increase the dose until I feel sure that I'm not reacting to the current dose. So this could go on for an extremely long time. But for some people, this medicine works so well that it allows them to tolerate other medicines...and foods, and environments. Unfortunately, if this is like my other medicine reactions, it will be a cumulative reaction that will worsen with each dose. I don't know how long I can stand it. So far, it does seem cumulative. But obviously, three days is early. But it is really hard to put my body through so much.

The thing is, when I'm successfully avoiding triggers (which is incredibly difficult), and when the barometer stays level and normal, I can stand to live in my skin. I sleep well through the night (with one expected wake-up). I don't have constant headaches and migraines. Both of these things feel miraculous. But they are totally dependent on my avoidance of all triggers. I can even work a job (although please don't ask how meager my income is). I can feel happy at times. I can spend pleasant time with my husband or my folks. So it is so hard to give up that tenuous well-being for a medication trial that isn't going well so far, and could even further escalate my condition.

It is just so frustrating!!! I want to give up so badly at times. Part of me feels very strongly that everyone in my life would be better off if I didn't exist. And at other times, I think I could be content with my little bubble life, and I wonder why I would risk it. I know I have to keep trying this medicine, because it truly is my last hope for the foreseeable future. And it is not fair to those that love me if I don't give it a good try. So I have to suffer. I honestly just want to be done. But I know I can't. I have to keep going through hell and find a way to retest my urine and try to get to a new doctor, if that is required. I just have to fight past the hopelessness and despair and keep trying.

It has been almost exactly two years since my hospital stay that escalated me to my current state. During that hospital stay, I developed the severe burning symptom. And my chemical sensitivities reached a level where I could no longer be in any scented environment or near even mildly scented people. I gave up teaching piano. I have been restricted to nine foods, two potential safe spaces, and three safe people. I have suffered every time I have tried to be near other people or left my safe spaces. Two years of such isolation. I have depressive tendencies to start. Then, my illness isolates me from so many people that I love. It is just so hard. Two years is a long freaking time. And I know it's just the beginning.

June is also looking to be a tricky month. All three of my safe people will be going on trips. Of course, I will be staying home, mostly alone. That is already messing with my head, that I am so incredibly trapped, and I may well never travel again. There will also be so many exposures to avoid. Resealing the street and driveway outside my mom's house will have me trapped in my apartment. I just have to hope that the potential cigarette smoke inside and grilling/bonfire smoke outside don't make it too unsafe for me. It does put me at higher risk for anaphylaxis. And if I go back to my high school level of anaphylaxis to smoke, there may be no turning back. Avoidance is the best way to prevent that. But it could get nearly impossible to avoid at times this month. I'll have to hole up in the bedroom at my apartment at least a few times, since it is the most sealed-off room. Unfortunately, there's no a/c in there, so passing out from heat is a real risk if I stay closed in there too long. Hopefully, it won't be too hot of a month.

Thanks for reading and listening. It is hard not to feel lonely in my bubble, especially when everyone goes to sleep long before I do. I still have my Wilma with me, although she sleeps a LOT. My poor little girl has had some problems. We haven't seen the vet about it (vet's offices are a scent nightmare), but she has something like doggie dementia. She loses her balance a lot. She doesn't know where sound is coming from. She has fallen down the whole stairway at Mom's twice! She's fallen off the bed more times than that. She doesn't know how doors work most of the time. She has run right into our sliding door. She's also run into a brick building after going potty. Sometimes, she sleeps so deeply that I can't wake her up. She shivers when she is confused, because it scares her. I think she shivers when she's in pain, too, but it's hard to tell, because she never cries. If she did, I'm pretty sure my heart would break. When she's been asleep for a while, it is hard for her to wake up, and her back legs don't work. She has had several days where she has stroke symptoms for a day. But the next day, she is all better. Except for the noted deficits. She still has a lot of really happy times where she acts like a puppy. Her motto seems to be, "Shake it off." She and I are very closely bonded. And I'm not allergic to her, which is huge! She still lets me sleep until noon, and she is really low-maintenance. I cook food for her to supplement her prescription food diet. But it keeps her GI totally under control. Otherwise, she is such an easy dog to care for, although she has never been well-trained to go potty outside. We do our best! I can't actually care for her alone. I need Gustavo to take her outside in the early morning. Otherwise, I can manage all the rest.

Okay. As always, I still have more to say, but I need to get ready for bed. My body wants to stay up until 3:00, but I try to force it to bed a couple hours earlier. Thanks for still caring, even though I can't see or even really meet most people. I am incredibly grateful to my three safe people, for helping to make my life livable... and possible. I really wouldn't be here without them. They put up with so much and accommodate my illness in countless ways. It is a huge burden that they help me carry. I'm also grateful to others that reach out, even though I am not always in a state to respond. It helps my life feel a little less empty. Love to you all.

February 2018

Well, I meant to post after the new year. I even wrote a paragraph for a new year's blog post, but the downward spiral continues, and time is mostly spent in a major reaction or a flare from too many reactions. Hopefully, I'll get through this post tonight, when I'm having a tiny lull in the severity of my symptoms.

I spend a whole lot of my time in Facebook Support Groups. It is such a great place to receive support and validation for rare, complex, and misunderstood conditions. I mostly participate in groups related to MCAS and Multiple Chemical Sensitivity, because those are the issues I am actively dealing with lately. And the ones I do not have much/any help to manage.

Anyway, someone in the group asked, have you accepted your illness? This was my response:

I keep progressing, so I keep having to learn to accept new levels of limitations. I don't know if I'll ever be able to accept being confined to one of two homes, and only able to be around 3 people. This life is too limited to accept. I've been sick forever. I've accepted that. I just can't accept losing almost everyone that matters to me and that still cared about me after being sick for so long. I value those people, and it hurts so much to see them slip away. I can accept eating 10 foods. But I can't accept that no one can even eat their food in the same home as me. It is just too much. I have accepted that I can not care for a child or have a family. But I can not accept that I can't even meet my own niece because her home is not unscented. This is all unacceptable to me.

Another conversation was about which class of chemicals you react to. This was my response:

I know I was originally sensitized to one class of chemicals, but it has always generalized and progressed. It was once only cigarette smoke, then generalized to all smoke. Then, it was only Dawn dish detergent, but generalized to all scented cleaning and laundry products. But I was safe with essential oils...until I wasn't. Now I react to any hint of any essential oil. And on and on. Rubber door mats. Then the smell of all cooking, followed by the smell of all seasoning Then artificial fruit flavoring (just the smell). Then natural fruit flavoring. Then mint flavoring. Then it got to the point I react severely to the smell of certain foods on someone's breath after they've eaten. And on and on. It has generalized to the point that I seem to react to all scents now.

So, I guess I'll pick up my diary of reactions where I left off, on Christmas Eve. Gustavo came home that night, having been in a scented home around scented people, and he came bearing scented gifts in scented wrapping paper. (Nothing he brought in was actually a scented product. In fact, there were many unscented products. But they had absorbed fragrance. So it was all a "second-hand" fragrance exposure- maybe 3rd hand?) Anyway, I developed facial pain at a level 8 and my eyes were burning. I was also in a panic at all the fragrance brought into the house. I had to take everything scented and get it outside to air out, quickly. And Gustavo had to change clothes and shower, quickly. It really is an urgent situation, because the longer the exposure, the more severe and prolonged the reaction. Also, I couldn't let the scent absorb into any of our stuff. It was also hard to deal with emotionally, because I had completely isolate myself all day, missed out on the festivities, and I still had to suffer the consequences. I was also distressed because video-chatting just hasn't been working well. We tend to have a poor connection, so even though we try to have me virtually participate, it really isn't successful.

Anyway, that was my delightful Christmas Eve. Christmas Day was rough, too. I woke up with burning eyes, and developed a migraine (with visual aura) during breakfast. Then, I reacted to the smell of coffee that my husband was drinking, even though he drank out of a thermos. The coffee on his breath was enough to trigger an intense burning in my torso. So, then we went to mom's house, where I hid out in the bedroom, apparently safe from any scents downstairs. Unfortunately, I hadn't accounted for the heating system sending air from downstairs up into the bedroom through the vents. I ended up with facial pain level 7 and bladder pain/symptoms.

So, December 26, I was really suffering from the holidays, even though I had not actually been around any people. My eye burning was severe. I had diarrhea (this is a really unusual symptom for me, since I have suffered chronic daily constipation since age 18. So diarrhea is my body's strongest sign to me that I am having a reaction, since it is so abnormal for me). Unfortunately, the barometric pressure was also really high that day, so I suffered global head and face pain.

December 27th was much the same. Diarrhea, burning eyes, severe sinus/facial/temple pain, photophobia, and nausea. I was also briefly exposed to woodsmoke outside.

My birthday was the 28th. There wasn't much to do in the way of celebrating. I spent it with my 3 people (mom, stepdad, husband) at mom's house. The barometric pressure came down, and my symptoms wore off a bit in the evening. I think we played cards or a word game. That was about it. At least there were no new triggers that day!

December 29th was a disaster! I was finally feeling better. This has happened so many times, I should assume that feeling better is an omen that something horrible is about to happen. And it did! I was home alone all day and evening, as my husband was out with friends after work. The sewers to our apartment building froze and backed up into our bathtub and toilet. I had to spend hours that day scooping water out of the toilet and pouring it outside to prevent it from overflowing. Unfortunately, someone in the building had taken a shower before knowing about the plumbing problem. So all of their scented shower water came up into our toilet. I scooped and dumped bucket after bucket of water, while wearing my respirator. It went on for hours, and our entire apartment was flooded with fragrance. This was the beginning of the nightmare. At 11:30 that night, Gustavo came home. The neighbors had all stopped using the water, so there was no more water to scoop. But I had to get out of the apartment. It was totally contaminated. We moved me over to my mom's house at midnight. Gustavo had to spend the next 2 weeks scrubbing and airing out the apartment, in winter weather! I don't know how he tolerated the low temperature and humidity.

The following days, I had plenty more exposures. After an exposure like that, I get sensitized, and begin reacting to new things. On new year's eve, I reacted to the smell of coffee brewing in the kitchen while I was sleeping upstairs. The smell came in through the vent and triggered severe burning in my chest/stomach. The burning persisted for at least a week. And I was still suffering severe head/facial pain from the sewer problem. I slept terribly for several days. The barometer went really high again, compounding all of my pain. It was really cold outside, and I began reacting to the smell of fireplace smoke seeping into the family room at mom's house every night. I was dealing with a lot of eye symptoms, too. Photophobia, swollen red eyelids, burning pain. The eye problems have persisted all winter, and I haven't worn contacts since Christmas. Too bad my glasses make my headaches worse, because I am blind without them. I also absolutely hate how I look in glasses, but all vanity is lost at this point. I dealt with a lot of bladder pain and symptoms as well.

I think I finally felt a bit better on January 7-8. The temperature was milder, so the heat was running less. And I had no exposures at all those days!

The next week was more of the same. Mild exposures, constant symptoms. The barometric pressure has not been my friend this winter, contributing to a lot of pain.

On January 13, I was exposed to the smell of hot peppers on my husband's breath. He didn't eat at home. The smell was just still on his breath. I developed what felt like fire in my chest and private area. This was a new symptom for me, that has recurred at times. I also developed bladder pain and frequency, mild throat swelling, and red eyelids.

The next day, I was still suffering. I awoke to diarrhea, the clear sign that I've been exposed to a trigger.

I suffered increased indigestion and burning inside for the next few days, along with nausea.

I trialed a new food, sweet potatoes. It did not go well. My abdomen swelled about 4 inches beyond it's normal size. I was bloated for a few days after that, and I slept terribly.

Then, on January 22nd, it was time for another medication trial. This one was purely for my own knowledge. I had to be my own lab rat again. I had to try a different brand of Klonopin to help me find out what I react to in another brand. I learned that Yellow dye #10 causes me severe diarrhea, insomnia, heart palpitations, and bloating. Good to know a clear trigger, but unfortunate to go through, as it took 2 days to confirm, and a few more to recover.

The end of January, I was mostly dealing with scary low vitals. My blood pressure was as low as 74/49 with a pulse of 55. It didn't ever reach 90/60 for several days. The barometer was up and my digestion was really slowed, causing nausea and reflux trouble. I'm on a lower dose of Omeprazole now (because it is the only one without red dye). So, I deal with a lot more heartburn and reflux than I used to. This is painful and makes me nervous, since my grandma died from esophageal cancer. I can't let this reflux go on indefinitely.

January 30th was bad news. The barometer dropped hugely. And I had to go to the psychiatrist's office. The office is inside a hospital building, and there are always plenty of scent exposures there. I wore my respirator the entire time and kept my coat on to keep my skin covered. I was inside for about 45 minutes. And, I've been suffering ever since. That day, I thought I had escaped a severe reaction. I had facial pain, exhaustion, mild burning and reflux. But the pain could have been from the barometric drop and wearing the respirator.

Unfortunately, the reaction was strong the following days. Sleep was poor. Migraine was persistent. Digestion was a mess. Bloating and diarrhea and reflux. Widespread burning throughout my torso. Vertigo and nausea. All of that was pretty constant.

Then, my next big disaster happened. We actually had some plumbing repairs done on Wednesday last week. I could smell a scent around both sinks, but I thought I was tolerating it. I was already in a terrible reaction, so I didn't realize that I had also been reacting to a chemical used in the repair. Until Saturday night. We were watching SNL. During the musical guest, I had Gustavo look at the pipe under the sink, because it seemed to be leaking again. So, he took apart the pipes under the sink, and this noxious putty came out. I got immediate vertigo, weakness, collapse, nausea, mucus, choking, then heart pounding and internal vibrations, headache, facial pain, reduced consciousness, followed by sobbing. Luckily, a Benadryl helped with a lot of that. But sleep was nearly impossible. Heart pounding and vibrations all night. Vertigo so bad it felt like the bed wouldn't stop moving. Sunday, I developed severe diarrhea and was very anxious and restless. I finally got out of the apartment and to my mom's house in the afternoon.

I am still trying to think clearly enough to figure out how to solve the problem. It is in both sinks. And it is a small apartment. So now that I am sensitized to it, I smell it everywhere. I have ordered a couple of non-toxic products that may be alternatives to the putty, but I can't be sure they will do the job. And I don't know when it will be done, or if we can get both sinks dealt with.

I am beyond frustrated. We had finally gotten the scent from the frozen sewers mostly out of the apartment. Now, who knows how long until I can move back home. I was essentially poisoned, so I need to be absolutely sure it is safe there and cleared of any residual chemical before I can go back.

After the exposure Saturday night, all I could do was sob and pray for death (and I don't believe in God). It's a weird obsessive thought that gets in my head after certain exposures. I am not suicidal, but some chemical exposures trick me into feeling that way, and I can't think about anything else. And then weirdly enough, the Benadryl kicked in, and my head went back to the "just deal with it" attitude I usually have.

I spent Sunday mostly alone (Sports Go Sports!). I have been sensitized again, so now I am reacting to some residual smell of fabric softener in the dryer vents that leaves a hint of fabric softener smell on clothes. I don't know how much more sensitive I can get to that poisonous smell. I had a lot of burning, body pain, nausea, and diarrhea all day.

Today is Monday. Day 6 of reacting (to the psychiatrist and the putty). Diarrhea is the worst it has been. I've lost 6 lbs. in as many days. Abdominal cramping was bad today. I've had facial pain and a headache, but no new exposures! Tonight is the most at ease I've felt since a week ago, before the trip to the hospital. A day with only diarrhea to deal with is a huge relief.

I'll be staying at mom's house until all residual putty smell is gone (hopefully). The bad news is, I have another doctor's appointment in 1 week, and another one 2 weeks after that. Next week will be my annual visit with my autonomic neurologist. I need to remain his patient, so I need to see him yearly, even if he isn't able to help with my current problems. I don't know exactly what I need to discuss with him or ask him for. Probably, I need to try compounding a PPI for the burning. But I actually have another medication trial to do before then. I need to try Nexium without the capsule. Apparently, you can just take the contents, and avoid all the dyes and gelatin that I react to. But that means I need to get back to baseline again, and then I need to risk ruining it with another medication trial. So, that will probably be my goal for later this week. Lab rat time again. It would be a simple solution, since Nexium is OTC, and I could just take more on bad days and less on good days.

Then, at the end of the month, I'm seeing the ophthalmologist. These eyes have been troubling me for months now, and I really miss my contacts. I think I have chronic dry eyes, causing the burning and abrasions. But I also have edema in the eyelids, probably from the MCAS. I haven't been in that medical building in many years, so I am scared to find out what the smell will be like, and I deeply dread getting sicker just to try to feel a tiny bit better at these doctor's appointments.

Well, sorry for writing another dissertation. I should really write more often, but the good days are few and far between. I am so lucky, as always, to have my support people, helping me through the meaningless suffering that is my life. I desperately wish I could be more to more people. Hopefully, one day, something will change. But I would settle for the downward spiral stopping.

I need to retrial the medicine called Gastrocrom. It is a mast cell stabilizer. I still have it here. I will be trying to titrate up extremely gradually this time. Because it is known for triggering a flare when you start it, and with every dosage change. But it is very stabilizing for many people after that. I just don't know when I can try it. It looks like March, because February is already a loss.

Thank you, thank you, thank you to those who read my saga and support me through this.

I have a few fun links today for anyone interested:

A great article about visiting someone with chemical sensitivities: http://www.ei-resource.org/expert-columns/dr-gloria-gilberes-column/visiting-a-victim-of-chemical-sensitivity-without-compromising-their-health/

An abstract explaining how chemically sensitive people can be sensitized to essential oils and the smell of food: https://www.ncbi.nlm.nih.gov/pubmed/26030111

The emotional aspects of multiple chemical sensitivity: https://themighty.com/2017/04/emotional-aspects-multiple-chemical-sensitivity-mcs/
      This article has an excellent quote about the emotional pain of chemical sensitivitis:  "And let’s not forget feeling discounted when family and friends choose their toxic fragrances and products over being in a relationship with us, or the frustration and often anger of knowing that the world in general is toxic to us and the helplessness of having to choose to be home-bound so we aren’t sick all the time."