Sunday, November 11, 2018

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.


Friday, June 1, 2018

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.

Tuesday, February 6, 2018

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."

Sunday, December 24, 2017

Progressive Isolation...Christmas Eve alone

Well, writing a blog post on Christmas eve is a bit unconventional. I've certainly never spent a Christmas Eve home alone. The rest of my family is all at church services or family gatherings. It's a hard pill to swallow that the only way to stay safe is to stay home alone. The degree of suffering for attempting to attend any of those events is way too much.

Thanksgiving was a bit of a disaster, even though my mom's side of the family tried so hard to make me comfortable. Every little thing was planned. Everyone went to great lengths to de-scent themselves. There was no cooking done. No strongly scented foods. Not at all a traditional Thanksgiving meal. But I was having a full-fledged reaction before we even arrived. I reacted to my husband's body wash, which was unscented, but still problematic for me (probably the botanical oils in there--not really fragrance free!). I was in and out of consciousness on the car ride over. I collapsed in mom's driveway. I was basically carried into the house, where I took a Benadryl, and waited for the reaction to ease up while being almost completely passed out for nearly an hour. It was a rough start, and it just got worse. I started developing a severe migraine with the associated neurological symptoms as soon as more people arrived. I had to go upstairs to my safe bedroom, and stay there the remainder of the night. My facial pain reached a 9 that evening, along with vertigo, nausea, lack of balance, and weakness. I remained sick for at least a weak, while also being even more sensitized to other triggers.

So, that is how I've ended up alone for Christmas Eve. For Christmas day, we have new plans. Everyone will still de-scent as best as they can. The food will still not be cooked in the house, or strongly scented. But I will spend the whole time up in the bedroom. We will Skype as much as we can. We'll try to play a game. My hubby will bring my food and gifts upstairs to me. It should be safe. Fingers crossed!

The past couple of months have been very emotional for me. A lot of total breakdowns. And major emotional breakdowns are really hard on my body, too. They usually trigger migraines and insomnia.

I've developed reactions to new things, or just identified more triggers. It's hard to say.

-I react to the smell of even more foods. Pretty much anything seasoned is problematic. My husband ate a cold tuna sandwich, and I had to hide in the bedroom with my chest burning for 2 hours. I also developed bladder cramping and facial pain that night. Other symptoms continued for a few days.

-I reacted to the smell of old coffee grounds. They were 3 days old. I developed an instant migraine upon entering the apartment, facial pain level 8, vertigo, nausea, tingling body, severe light sensitivity, burning chest, my tongue felt swollen, slurred speech, and aphasia. It was nuts how severe the reaction was to an undetectable scent that I wasn't even aware was there. I stayed sick for days, but also had more exposures in the following days.

-Pharmacies have continued to make my life difficult by changing the manufacturer of my generic medications. I now have 3 Rx meds that I have identified a brand that I can tolerate and a brand that makes me incredibly sick. There is no real indication yet of what inactive ingredient I may be reacting to, besides red dyes. There are still some unknown culprits. The symptoms to the wrong brand of the same medication usually include: insomnia, diarrhea, itching, bladder pain, facial pain, headaches, low blood pressure, and GI bloating. They tend to pass in a few days, but it can take time to identify the cause and access the right brand again. I go to 3 different pharmacies currently to get my safe brands of meds. It requires a lot of phone calls each month to make sure the brand I need is ordered in time. It is a huge hassle, and a real challenge with brain fog.

-I'm still reacting to weather changes, especially barometric pressure changes. I don't just react with a migraine anymore. I frequently get a whole mast cell cascade of symptoms, with chest burning, nausea, swelling, vertigo, itching, insomnia, and more. This has been nearly constant the last couple of months.

-I've started reacting to the smell of rubber-backed doormats. I've only recently identified this as a problem, so we're still trying to find a good replacement. I suspect this smell has been bothering me for a long time, but I've only recently identified it. (I used to think it was gas of some sort.)

-If my sleep is interrupted, I'll be sick all day.

-We had our apartment's smoke alarm go off. The fire department came and identified a burning plastic pipe in the laundry room. Luckily, we were able to duct tape up our door, so nothing got inside. But that could have been disastrous.

-I barely, barely, burned some carrots in the microwave. The tiny hint of smoke created sent my head pain to a level 9, again, along with burning in my chest and abdominal pain.

-At this point, I react to being around anyone that doesn't lead an unscented life. So many scents hang around. I react to second hand exposures to fragrances. So if Gustavo comes home from his mom's house or the pharmacy, he has to change clothes, because the scent is now on him. If my mom comes home from a concert, she was around scented people and got hugged by scented people, so she is now scented. The other huge issue is laundry products. My sensitivity is so severe, probably because I am exposed to it most times that I step outside every day (laundry vent exhaust in our apartment complex). For the last 6 months, we have not been able to wash our laundry in our apartment's laundry machines. Even though we use unscented products, the machines usually have scented products in them. So the residue comes off onto our clothing, making it unsafe. So, I assume this is a problem for anyone that has a shared machine and anyone that even occasionally uses scented products in the laundry. This particular issue has made the isolation so severe. Because even if a person follows a perfect unscented protocol, they will still smell like Tide or Gain or Bounty to me, and I will still react severely. Highlighting this so those that are skimming can better understand why I can't have visitors anymore.

With all of these reactions, I haven't trialed new medicines, and I haven't seen any new doctors. I just needed a break from that. But not much of a break, because I'm still constantly reacting to things. My "good days" have been decreased to a couple of good hours a week. Daily symptoms include headaches, facial pain, heart rate and blood pressure changes, severe brain fog, random eye abrasions upon waking, unpredictable insomnia, and GI problems. I am so grateful I no longer have pain level 7 or above on an average day. And I am so grateful that I get enough sleep more nights than not. I truly believe the reason this has improved is my attempted avoidance of all triggers, especially environmental ones. But daily symptoms are still severe enough that I dread every day.

I tend to suffer from brain fog most of the time, to the point that I feel mostly numb or I'm vaguely aware of depression. But whenever I am feeling more clear-headed, I start to feel very emotional, and end up crying uncontrollably.

It's been a year and a half so far that I have been progressively housebound. Now, I can be around 3 safe people and I have 2 safe environments. (Technically, there are a few more safe people, but they live in Boston!) I still have about 12 tolerable foods. But I am very lucky I still have those things. But I continue to decline and become more sensitive. It is crushing my spirit. I am so grateful for what I have, but frequently mourn for all I have lost and continue to lose. And I fear for my future.



I have a few other random thoughts. It is amazing how much lack of understanding and disbelief from doctors can damage your psyche. I have never been the same since that started. Certain incidents still flashback in my mind, 15-20 years later. And I still have a wariness/hostility toward a lot of doctors. I try not to. But this whole nightmare of MCAS progressing and not being diagnosed for years, and still not finding viable treatment has made it all so much worse.




I also have some ideas to share with anyone that has EDS and POTS, but not yet MCAS. Or has mild MCAS or suspected MCAS. Or anyone newly diagnosed with MCAS. Things I wish I had known:

Get ready to be your own lab rat. No one will have the answers for you. Your body's reactions will guide you to your safer lifestyle, if you pay attention for long enough. Of course, doctors can help with trialing medications and some general lifestyle recommendations. But most of us have to figure out the how to live part on our own. What to eat, which medicines (including the manufacturer) have more positives than negatives, what environmental changes would be helpful. Support groups are soooo helpful for getting ideas of what to try or what might be hurting you. But only you can figure out what will work for you.

A good place to start is limiting the number of chemicals and ingredients you are exposed to in daily life. In food, medication, personal products, and cleaning products. Keep your routine as simple as possible. Fragrance free is a great place to start. Natural and organic are not always safer with mast cells. A low histamine diet is another good place to start, but again, you'll have to learn for yourself what actually helps and hurts you. It could be salicylates or oxylates or FODMAPS or dairy or gluten, or anything really. (E.g. You may need to eat mostly meat or you may never be able to eat meat.)

Also, don't waste years with doctors that aren't well-informed about MCAS. They will just be lost years where you continue to progress.

I would also try to avoid trauma and surgery as much as anyone can. Nothing has progressed my disease like surgeries and inpatient stays. It's hard to say if I regret surgery, because the fact is, my life is no longer in danger from a destabilized skull/spine. But I certainly wish I could have been well fused 15 years ago when I had my first brain surgery, instead of it taking multiple traumatic surgeries over the course of a decade. Who knows what shape I would be in now?

Finally, it can be hard to read about so many miraculous recoveries, and then what worked for someone else didn't work for you. Most people will improve. Some very quickly, others in time. Some will be able to live close to a normal life. Others will become housebound. We don't all find the miracle combination that gives us some version of our life back. But we have to keep trying.




Well, I don't know what the point of writing was today. Other than loneliness, and needing to get out some thoughts that have been wandering around my oxygen-deprived brain. It's hard to wish for a Merry Christmas. The fact is, many will have a very merry Christmas. Others will still be sick and in pain and severely limited in what they can do. It is hard to see people celebrating with their families, with their children, making cookies, doing all the things I used to look forward to every year. Tonight, I am watching Netflix alone, like I do most of the time. Hopefully, letting out the negativity tonight will make me less likely to be cranky tomorrow.

I am very grateful that some people still care about me, even though I can't see them. I am grateful that I have a few people that have changed their lifestyles completely so that I don't have to be alone all the time. I am so grateful for my little Wilma. I think she is an irreplaceable companion (that lets me sleep until noon without making a peep and likes to be a couch potato all day with me...and is also hypoallergenic!). I am grateful for sleep, although not so much when it gives me corneal abrasions, like today. I often wish I just didn't exist anymore. But since I have to exist, I am glad I am not all alone yet.

Thank you for reading and caring.

Tuesday, October 31, 2017

The hits just keep coming!

Well, it's been almost 2 months. I don't have much revolutionary to update. But I will anyway to help me keep track of my progression. I have had a few less symptomatic days, which were inevitably followed by major exposures. This disease does not give me a break. I've also developed a few new sensitivities along the way. In my brain-fogged state, it's really hard to organize my thoughts. So, I'm just going to share the notes from my symptom journal. The journal helps me to pick out the major triggers and pinpoint any changes. I highlight possible triggers. I'll try to summarize at the end, if you feel like skipping.

September 5-7

Mostly average days with a lot of GI troubles. Chest burning, random bouts of anxiety, major abdominal bloating, acid reflux, food reflux, fullness, headache, nausea.

September 7

I got the correct brand of Omeprazole, but it was an older formulation with more Red food dye #40 in it. I developed manic energy in the evening, irritability, pressured speech, and insomnia.

September 8

I woke up after four hours of sleep with a pounding heart, unable to sleep anymore. I had diarrhea and more manic energy in the evening.

September 9

I slept about 5 hours. I had burning chest, itching, headache, facial pain, sinusitis, and flu-like symptoms. I was then exposed to the smell of barbecue smoke outside. I instantly developed level 7 facial pain, chest burning, and random crying spells.

September 10

I finally slept well. But suffered fatigue, facial pain, sinus pressure, and itching. After dinner, I felt burning pain in my chest/back/arms. I had an episode of reduced consciousness with heart fluttering and paralysis. I also developed facial pain and vertigo.

September 11-13

I had widespread burning sensation, facial pain, hot face and eyes, and agitation at times.

September 14

Thanks to the generosity of a friend, I was able to get the correct brand of Omeprazole (Glenmark). The dose was only half my dose, but the formula was very similar to my safe version. This pill had no red dye. I had some burning, agitation, and lethargy.

September 15

I was feeling more normal, with minimal symptoms! It was such a relief. But of course, short lived.

September 16

I was very daring, and tried to attend an outdoor birthday party for my nephew. I suffered severely for it. I was exposed to scents while I was there, even though it was outside. But I also got 3 mosquito bites while I was outside. That day, I developed severe facial pain and vertigo, but I was able to sleep.

September 17

The real reaction to the mosquito bites started. My bites became very swollen and severely itchy, and I developed some reactive hives. The hives became indistinguishable to the bites, and were found mostly symmetrically on my body to the mosquito bites. That evening, I developed severe agitation. I then got two different migraines with visual auras. I had insomnia, diarrhea, and severe itching all night long. I slept for 2-3 hours at a time with Benadryl and ice packs strapped to my legs over the worst of the itching.

https://www.axonoptics.com/wp-content/uploads/2012/11/Screen-Shot-2015-11-03-at-11.25.35-AM.png
Photo Credit: http://www.raynersmale.com/blog/2016/11/4/pathophysiology-symptomology-of-migraine-headaches

September 18

As if the mosquito reaction wasn't enough, I started developing a sore throat with a fever in the evening (I had been around a few people with colds, so of course, I got it.) With the fever, I was only able to sleep from 8:00 AM to 11:00 AM, once the fever came down. Of course, I can't medicate for a fever in any way, so there was no way to get relief until the fever came down on its own. And any infection at all flares up mast cells majorly.

September 19

I had a very sore throat, sinus pressure and pain, excess mucus, body pain, lethargy, time spent passed out. My fever was up to 100.5. Again, I only slept from 8:00 AM to 11:00 AM. All night, I had severe itching, heart pounding/racing, fever, and I needed ice packs strapped to my legs at all times. I went downstairs every hour or two to get new ice packs. I also had frequent urination all night. I took extra Zyrtec and Benadryl, but still couldn't sleep. So frustrating!

September 20

After the lack of sleep, and with an active infection and mast cell reaction, I was in absolute misery. Body pain, lethargy, burning eyes, sinus pain, chills/hot flushes, sore throat, weakness. I still had very itchy bites and hives that had become swollen, hard, red, and very hot. The whole backs of my calves were a disaster. I had severe facial pain and headache, nausea, and lack of appetite. My fever went up again in the evening. I also developed a migraine.

September 21

My fever finally eased off. I was able to sleep at night and function during the day. I still had sinus pressure and itching, but I was much more content now that I'd slept.

September 22

I slept well again, but developed a migraine in the morning. I then had to head to a doctor's appointment (allergist). The car ride and the foreign environment made my migraine shoot up to a level 8 pain. I had burning chest and anxiety after dinner. I had major bloating in the evening. But I was able to sleep.

September 23

Migraine and burning persisted. Cold symptoms persisted. Itching from mosquito bites and hives had finally eased to a tolerable level.

September 24

Migraine was lessening. Some episodes of burning. Cold symptoms persisted.

September 25

Shorter episodes of burning. Mild facial pain. Cold symptoms persisted. That night, I started a new brand of generic Ambien.

September 26

I did not sleep. I developed severe fatigue, body pain, facial pain, headache, itching, nausea, lack of balance, irritability. There was also an impending major change in the weather. My cold and burning persisted.

September 27

I had to continue with the new Ambien. I barely slept. I had a pounding heart most of the night. I felt on edge, anxious, shaky/jittery, diarrhea, burning face, burning chest, facial pain, diarrhea,  tachycardia, and got a rash on my face. This was a classic mast cell reaction to the Ambien. I had to put in an urgent call to local pharmacies and my psychiatrist to get the medication issue resolved. Thankfully, I was able to get my safe brand of Ambien picked up that night, although insurance wouldn't cover it at the pharmacy that was able to obtain it.

September 28

I slept incredibly well back on my normal Ambien. I had short episodes of burning that were pretty mild. But I got another corneal abrasion upon waking.

September 29

I got a corneal abrasion upon waking in the other eye. There was more mild burning, lethargy, and body pain.

September 30

I was exposed to the smell of hot sauce. I was in another room, but the smell permeated. I had an immediate reaction as if there were smoke. I had wheezing, burning, and vertigo. I had an itchy and restless night last night.

October 1

I had very low blood pressure in the morning, so it was very hard to get up. I had more severe burning, anxiety, and brain fog all day.

October 2

I had another itchy, restless night with low blood pressure in the morning. (80/45) I had random bouts of anxiety and burning. I seemed to be reacting to all food and medication that day.

October 3

Still reacting to the hot sauce. I awoke with pounding heart and low blood pressure again. I had headache/facial pain all day.

October 5

I had times with reduced consciousness. I took my Omeprazole 3 hours late that day. I have no idea if it could have caused all of my symptoms. I had heartburn all day, a bad choking spell, itching, burning eyes, red, swollen eyelids, lethargy, and aching. I also somehow injured my left wrist that day, and ended up needing to brace it for a few weeks. (I already brace my right wrist daily.)

October 6

There were storms and a large drop in barometric pressure. I had severe facial pain all day.

October 7

I had fatigue, bloating, itchy eyes and nose and skin on abdomen. My vision was going in and out of focus. I had a prolonged episode of reduced consciousness. I had evening chest burning. I was awake until 3 AM. I required Benadryl for full-body itching at 2:30 and 6:30 AM.

October 8

I had a pretty normal day, except for some itching. Overnight, I had itching again, and needed Benadryl at 1:00 and 6:00 AM.

October 9

I was generally really out of it. Mild chest burning and bladder pain. I had an episode of overheating followed by reduced consciousness. (Is it really October, and we need the air conditioner?) I then developed a stroke-like migraine. My right eye was drooping. I had headache and nausea, as well as bladder pain. When I developed extreme light sensitivity, I knew I had developed a hemiplegic migraine. I had another itchy night, but I slept well.

October 10

I had bloating and swelling of the eyes and upper lip. I had some pretty bad heartburn. I developed severe fatigue and brain fog. I was just staring for hours. Two hours after dinner, I developed heart palpitations and burning chest. The heartburn and reflux kept me up late that night.

October 11

I slept late, but well without Benadryl. However, I spent most of the day crying. It was a stormy day. I developed severe facial pain.

October 12

I slept late, but well without Benadryl again. I spent more time crying, and it was really overcast outside, so the facial pain was still pretty bad. I had heartburn, too.

October 13

I had a new reaction that day. I had a brief reaction to the smell of "natural blueberry flavoring" in my husband's protein bar. I developed severe headache and vertigo. Luckily, it eased off once we got rid of the scent. But, that evening, I went into Trader Joe's, and they had put their cinnamon brooms out for the season. (They will be there for the next 3 months.) I immediately left, but developed wheezing, bronchospasms, itchy chest, mucus, instant headache and vertigo, nausea, and intense facial pain.

October 14

I slept well, but there were bad storms again this day. I had severe facial pain and headache, nausea, malaise, and bladder pain, followed by a brief manic time before bed.

October 15

I slept poorly. I had severe malaise, nausea, fatigue, moderate headache and facial pain, and cold painful feet. In the evening, I had severe chest burning. It seemed that I can no longer tolerate my Thermotabs. They are buffered salt tablets. I take 8-10 of them per day with plenty of water to treat my POTS symptoms, but I have suspected that they have been contributing to my burning chest. It is either just the saltiness with my lower dose of Omeprazole, or it is a reaction to the fillers. Either way, I was pretty sure I couldn't take them anymore. My life will be much more difficult without them.

I also developed bad muscle spasms in my neck, causing a headache, as well as bladder pain.

This day was also very difficult on me emotionally, because I missed out on two family gatherings. It was just really sad.

October 16

I had headache, nausea, chest burning, and widespread body pain (especially knees, wrists, pelvis, and muscles).

October 17

I awoke to another corneal abrasion. My eye was swollen, teary, and red, and I got a runny nose from it. I had to wear my glasses all day, which gave me a really bad headache all day.

October 18

Headache, dizziness, fatigue, brain fog. Short episode of a swollen, red upper lip. I had trouble sleeping that night.

October 19

Major fatigue and an episode with hot eyes and head (temperature 99.2). I had a decent evening. I got some exercise in that evening. My POTS has been much worse without Thermotabs.

October 20

I went on our usual grocery trip. (I sit in the car while Gustavo goes into Target. I try to go with into the grocery store.) There were no major exposures, but the car ride felt really rough on me. I developed nausea, body tingling, and a level 8 migraine. I may be done with grocery trips, which have been my only trip out of my safe spaces.

October 21

My migraine continued at a level 6, going to 7 or 8 if I move around. I had a puffy upper lip and burning eyes. Migraine was an 8 in the evening. I also had bladder pain and increased pain in my feet and knees.

October 22

I had a terrible sleep. There was rain all night and day. I woke after 4 hours of sleep with low blood pressure and pounding heart. (80/40) My migraine persisted, along with bladder pain. At 2:30, the smell of a neighbor's cooking seeped into my apartment. Luckily, the weather still allowed me to have the window wide open with the fan blowing fresh air in. And luckily, the outdoor air was fresh. But it was too late. My migraine pain was a level 8 in the dark silence. Pain in my teeth and bladder. I developed a mild fever again, as well as nausea.

October 23

I slept great! The weather was better, and my migraine was improved. Unfortunately, there was a major barometric pressure drop again. A new migraine was triggered at 8:15 PM. It was immediately after a very brief exposure to some tainted laundry detergent. I literally only got one inhalation of the laundry scent, but ended up with pain level 8. It was technically unscented detergent, but it had been tainted with laundry scent.

October 24

I slept well and had an okay day. I still had a low level migraine. But I exercised again at night. I ended up with a lot of body pain (shoulder, wrists, knees, feet, SI joint). I had heartburn at bedtime and midnight body itching.

October 25

My migraine switched to the other side after one inhalation of barbecue smoke outside. Pain was a level 7. I had abdominal bloating and pain, as well as heartburn.

October 26

The migraine persisted, causing postural headache and nausea. In the evening, I returned home to where the heat had been run for the first time. It wasn't on anymore, but it still irritated my system. I had chest burning, headache, nausea, itching, and bronchospasms.

October 27

I had overnight itching, restless sleep, and woke up uneasy. I had nausea and bladder pain. I had to go to a doctor's appointment (new PCP). There were no major smells in the office, but it was still a foreign environment for my system. When I got home from the appointment, I seemed to be manic for the rest of the day. I was also having tachycardia, and I was really shaky. I also had severe bladder pain/urgency. It felt just like a UTI, needing to urinate frequently. I also had a burning chest in the evening. I remained in a manic state until late at night (early morning, really).

October 28

I had a headache in my teeth this day. I had heartburn and milder bladder pain/urgency. In the evening, I felt well enough to exercise.

October 29

I had mild heartburn and nausea, as well as facial pressure and excess mucus. I was having bladder retention, too.

October 30

I had to go to another doctor's office (psychiatrist). There were very strong scent exposures. I wore my respirator. But I also kept my winter coat on the whole time. I believe that covering my skin prevented so much absorption of the scent, which lessened the severity of my reaction. I still suffered from pain in face, cough, nausea, vertigo, full body pain and tingling, burning in torso, severe fatigue, pounding heart, bladder pain, excess mucus, and tinnitus. It sounds like a lot, but it honestly wasn't as bad as I expected. But seriously, this office at Lutheran General Hospital is absolutely toxic. All sorts of perfumes and air fresheners and caustic cleansers.

October 31

Today, I had a headache and facial pain, level 6. I also had fluttering heart and fatigue as well as bladder pain. Chest burning and worsening facial pain into the evening.



Soooooo.....these months have been full of struggles. The change of seasons brings the migraines to the forefront every time. Multiple medicine formulation changes have really shaken me up and caused me no end of suffering. The reaction to Thermotabs has been especially problematic, because I can no longer manage my POTS at all. The upper respiratory infection and the mosquito bites caused me two weeks of pure misery. Every trip out of my homes has caused me more trouble. Bladder pain has become a much more prominent symptom. I used to always feel the reaction in my face first, but now, sometimes my bladder cries out first. It is not unusual for mast cell patients to suffer from symptoms of cystitis. The lining of the bladder is actually full of mast cells. And mast cell degranulation releases mediators into the urine (this is why it frequently shows up on urine testing). Anyway, inflammation of the bladder lining that feels like a UTI with cramping, pain, and frequent voiding is a common symptom.

Neurological reactions are always frustrating. I know that plenty of people are misdiagnosed with Bipolar Disorder, and later shown to have complete relief of symptoms with a mast cell protocol. I completely understand how that happens, with my reactive bouts of crying, mania, or panic. I am frustrated that even my good days are pretty symptomatic. I believe if I could go long enough without a trigger, I could get back to baseline. But I haven't really been there in many months. You can't exactly control the weather. And you cannot control which manufacturer the pharmacy uses in any given month. You can try, but you will fail!

I'm also really distressed that a single whiff of a scent has been triggering severe reactions. It used to be that I was exposed to something, and if I fled, I would be okay. But lately, the first inhalation of an irritant is enough to ruin my day.

I have tried exercising whenever I am able (maybe twice a week). I'm only doing a few PT moves that should be safe. But I always end up with increased joint pain the next day, making it hard to function that day. I will keep trying though.

Also, I think it is really notable that my psychiatrist's office was really strongly scented, and I had a less severe reaction than expected. I really attribute it to my multiple layers and long winter coat that I didn't remove, along with my respirator. (I think my husband is right. The only way I could exist in the world is in a scuba suit!) They do make cheap Hazmat suits. I don't know how I would wear it without looking crazier than I already do. But at the very least, keeping my skin well covered may protect me from the most severe reactions.

I could try to get all of my medications at the compounding pharmacy, but it would be so expensive. Currently, all of my prescriptions are free with our new, expensive insurance. So, paying ~$50 a month for each month would be quite a hit. Also, I still don't know of a safe capsule or a safe filler.

And I know this should be no big deal, but I have been on a slightly higher dose (1/4 of a pill) of my Remeron since June. It has alleviated the worst of my depression. But it has the unfortunate side effect of weight gain. My diet certainly hasn't changed. My portion sizes may even be a little less, since I've had GI trouble and reflux. And I have gained 9 pounds. I hate it. It's just hard to accept, but it is a choice I have to make for my emotional well-being. There is a whole lot for me to deal with emotionally. It is the only medicine I can take for it, since I can't raise my serotonin levels. And my psychiatrist would like me on a slightly higher dose (another 1/4 of a pill). My PCP says I shouldn't lose any weight, because I am at the bottom of the healthy BMI. But it's still hard to accept 9 pounds of extra fat on your body.

Also, so far, we haven't run the heat while I'm home at our apartment. We haven't needed to yet. (30 degrees outside, 72 degrees inside) But at some point, I will have to acclimate to it, which I'm pretty sure never happened last year. So that will be another trigger to cope with.

I don't have any doctor's appointments scheduled, but I'm sure they'll come up. I am supposed to schedule with the next MCAS specialist. She is an integrative endocrinologist. She does not take insurance. But she is local (downtown) and I have heard good reviews from other patients. She has a special interest in mast cell diseases, because she identified her own MCAS. (website: http://www.integrativeendo.com/specialties/#mcd) She has been able to manage it well enough to run a medical practice. I believe she will have some excellent input for me. I honestly feel like I already know everything to try. I just don't know what to try next. I'm stalled out after failing so many treatments and progressing to the point that I react to almost everything. I haven't successfully tried a new treatment in a long time. I believe I need to retrial Cromolyn Sodium. I also need to try Dihydroquercetin, which is a supplement. But I am pretty terrified to do it. There are so many unavoidable triggers, it is difficult to add more risks to my life. But, I will be scheduling the appointment sometime.

Thank you for reading tonight's long and maybe pointless update. I am still so grateful for my safe people and my safe spaces. I would simply give up without them.

Tuesday, September 5, 2017

When will this downward spiral stop?

Well, I have not taken good notes on my symptoms and medication trials this month. Things haven't gone well, so I've had a harder time caring to record everything.

It's mostly a blur of symptoms. I did try the compounded Zantac without the capsule and the compounded Ketotifen without the capsule. Unfortunately, I reacted poorly to them. Especially Ketotifen. I took half of the smallest dose, and suffered from the burning in my torso, followed by insomnia with low blood pressure and pounding heart. I could still try the Zantac again sometime, because I only really noticed digestive symptoms, but I am having those every day anyway, so it may have been fine. I definitely react to the gelatin capsule from the compounding pharmacy, but I don't react to all gelatin (Zyrtec Liquid Gels and Benadryl Liquid Gels are considered safe meds for me.) I understand that gelatin for capsules comes from beef or pork, so maybe I tolerate one but not the other. And even scarier, maybe I won't tolerate them for long.

It also may be possible to have these medications compounded in pure water, and titrate the dose up much more gradually.

The problem is, I would have to get back to baseline first, and I am currently in a flare, where I am reacting most of the time. I don't tolerate my normal food or medicine or environment.

This flare started with a trip to the Optometrist to order a new pair of glasses. I have been putting this trip off for a couple of years, because I figured it would be problematic. I already had the prescription, but I needed to order the new glasses. Unfortunately, I couldn't just order online, because I needed a specialty brand, Silhouettes. These particular rimless, titanium glasses are the only ones that don't give me a headache (although I still prefer no glasses for head pain). With my frequent eye injuries, decent glasses with my current prescription became a necessity. So, I bit the bullet and went in a store that could make these particular glasses. The scent was suffocating in the tiny store. I wore my mask the whole time, but it honestly doesn't matter anymore.

Before the trip to the store, I had actually had 2 good days. I considered myself back at baseline. My digestion still sucked (reflux, bloating, and irregularity), but overall, I was doing okay. Then, on August 26, I went in the store. We took 10-15 minutes to complete the order. I had no immediate symptoms, which was strange, but not too strange. Delayed and prolonged reactions are becoming more common for me. The pain in my face started soon. I did the nasal irrigation to try to rinse out any residual fragrance from my sinuses. Maybe it helped, because the facial pain didn't get worse than a 7.

However, the rest of the symptoms have been hell. I started developing weird, manic energy, followed by insomnia until 8:00 AM (which is pretty damn impressive with the amount of sedatives I take.) I developed itching and hives on one foot and my face.

The next day, I developed severe fatigue, malaise, nausea, and body pain. I was unable to do anything all day. I developed burning pain in my chest and upper arms that evening. Facial pain worsened again. I also got bad abdominal pain.

The following days after the exposure, the burning chest, body pain, headache, nausea, bloating, and facial pain persisted, coming in waves throughout the day.

I also had a couple more days that week with weird, manic energy and panic at times. Benadryl calmed the mania, so we know it wasn't psychiatric in nature, but mast cell driven.

Today, 11 days after the exposure, my mast cells are still overreacting to everything. I get chest burning, small bouts of anxiety, major bloating, reflux, fullness, headache, and nausea a lot of the time. My sleep is mostly back to normal, and I haven't felt manic. But I am no where near normal. Until the burning goes away, I won't feel anywhere near normal.

This burning is such a severe symptom that it has caused me to avoid all pain medications in all circumstances. No matter how bad my pain, I know the burning would be worse than the relief I would get from the medicine. There are a bunch of other medicines I'm also avoiding for the same reason.




So, besides all of this junk, I've been dealing with a new health insurance, which started September 1. I have to arrange to transfer some prescriptions to a new pharmacy, since CVS is no longer covered. Also, they are, of course, going to be 2-3 weeks late in mailing us our new cards. So that has been an annoyance.

But even more frustrating and scary has been that Walgreens informed me that the only manufacturer of Omeprazole that I tolerate will be discontinuing it. My supply officially will run out on 9/25. And I have reacted to all other PPIs that I have tried. It may be the iron that is added to most of them that I am reacting to. But the crazy thing is, I contacted the manufacturer directly to confirm, and they do not seem to be discontinuing this drug. So Walgreens lied to me. My life is absolute misery without it. But I can't figure out how to obtain it. The pharmaceutical company informed me that they contract with Walmart. So I could try to contact them and see if they are able to order this specific manufacturer. But for that, I would need a prescription, and none of my doctors are helping me right now. I will see my MCAS doctor on the 22nd. But that is cutting it really close, and she is not returning my call, which is weird and frustrating. I don't actually have a PCP right now. It would be excellent to have one, especially if I could contact them electronically. But going in offices is still a major trigger for me, so I keep putting it off and spreading out only the most necessary appointments as much as possible.

I could also try to get a PPI compounded, although I did not have much success with the last compounded medicine I tried. But obviously, if I react to all but one of this medicine, it is some filler(s) that I am reacting to, not the drug itself. So compounding makes sense, because they can leave out fillers. It's much, much more expensive though. And I would still need a paper prescription first.

I honestly don't know what to do about this, and I know the closer I get to September 25, the more anxious I will get about running out. I am so scared about it. Why do they have to use so many fillers in everything? And why do I have to react to every building I go in? Why does it have to be so hard all the time?

I've known that I had MCAS for a long time. I've been dealing with illness for the majority of my life. But now that I have the MCAS diagnosis, it was supposed to get easier. So many people just start Zyrtec/Zantac/Singulair/Cromolyn and feel 1000 times better. So far, I only tolerate Zyrtec and Benadryl (only liquid gel form). But that only manages a small number of symptoms. My itching is so much better! But I am still homebound, reacting every day. Prolonged, overlapping reactions. Never getting a break. And I suffer severe untreated pain most days, which has traumatized me. Every time I leave my home, I end up in severe pain for at least several days, as well as becoming more reactive for a week or more, which has also traumatized me. So I am more terrified to leave the house each time. Most of my time is spent alone, suffering. I don't think I will learn to cope with this until I can find something that helps me feel better. I'm not asking for much. Just one level higher on the quality of life scale would make a huge difference. I know I'll never be able to eat what I want, exercise how I want, go where I want, be around everyone I want to see, etc. Just one degree less suffering would be enough. To be able to spend time with my family that I love and haven't seen in over a year due to scent reactions. To maybe visit with friends on occasion or attend an in-person support group. To just not be terrified of every trip out of the house making me sicker. I just need a little help.

Unfortunately, a few of my treatment possibilities are pretty much gone. Brand name Gastrocrom is not covered by my new insurance, so I won't get to try it ($4,000 for a month supply). I would need to try the generic version again, this time titrating as gradually as possible. Ketotifen is pretty much off the table (I have a $100 bottle just sitting here that I cannot take.). And Dr. Afrin has become pretty much a pipe dream. He is creating his own mast cell clinic, but it will be considered an integrative clinic and out of network. The first two appointments with him are $2000 each, in New York. Travel on its own is pretty much out of the question. But the cost of visits is just so out of reach for any average human.

So, I can keep seeing the doctor that knew enough to diagnose me. She is nearby. She is hesitantly willing to help. But she doesn't know what to try next, and really, neither do I.

The only real things left are Xolair and Gleevec. Xolair is an antibody used to decrease allergic reactions. But it is usually only used in patients with high IgE levels, and mine are fine. (Mast cell reactions are not allergic reactions.) There is some evidence of it working in mast cell patients with normal IgE levels, for unknown reasons, but it is a high-risk medicine. It has a high risk of making me worse rather than better. Gleevec is a chemo drug that has some evidence of helping some MCAS patients. Of course, it is a high risk drug, too.

And I'm pretty sure my current doctor wouldn't approve either of these for me.

The only real treatment seems to be trigger avoidance. But honestly, my life is so meaningless like this. I would give anything to get back to baseline. But once I do, I will start to wonder at the purpose of a life like this. A life where I can't see almost anyone or go almost anywhere. A life where I have good reason to be afraid of everyone and everything around me. A life where I mostly suffer alone for leaving the house or trying a new medication. But I think it's better than the alternative.

Any sane person, if going to Target left them with level 9 pain for 5 days, as well as a host of other symptoms, they would never step foot in Target again. Self-preservation is not a neurosis. It is sanity.

Sorry to be blathering, but this prescribed life is so tiresome and meaningless. I can only sit in one chair with the right cushion to prevent SI dislocations. I can only sleep on a sleep number bed on a low setting with 4 mattress toppers to prevent shoulder subluxations/nerve damage. I can only drink lukewarm water. I cannot eat fruit, dairy, almost all meat, and honestly most other food. I have a very short list of supposedly safe foods that are only possibly safe between room and body temperature (I literally have to warm up my almond milk to room temperature to eat cereal, or suffer the burning in my chest afterward from the cold). My air has to be free of scents/harmful chemicals and purified constantly. I can wear one pair of shoes with my $500 orthotics that really need to be replaced, and I still suffer from foot and knee pain whenever I'm on my feet. My body has a very limited number of steps and time upright each day. I rarely have the cognitive ability to have a conversation before 8:00 PM. I spend most of my awake time playing mindless games on my iPad, because that's all I'm capable of, and it passes the time. I mostly view life as something I want to get over with. I hate that I am now afraid of crying or laughing to much, because it also triggers a reaction. I am an emotional person, especially lately, so this is hard to avoid, but I have to try.

I am terrified of the future. I am terrified of the progression of my disease. I am terrified of suffering any future trauma (of which there will be plenty) that will worsen my disease permanently. This will include medical tests, procedures, surgeries, medications, chemical exposures, hormonal changes, loss, grief, and other emotional traumas. If I do have to have a medical procedure or surgery, I will not be allowed pain meds, and pain itself triggers mast cells. If I contract an infection, chances are I will not tolerate the antibiotic I need to treat it. I do not see the point of this life. There is so much suffering and so little outside of it. It is so difficult to find the will to persist and to endure. It is so difficult to find joy with these kinds of life limitations. And the future is so bleak it scares me. I literally try to imagine my dog dying every day, so that when it actually happens, it won't be such a shock to my system. I am terrified of dying when I cannot be in a hospital and I cannot receive almost any medication. As with all chronic pain, my body's capacity to feel pain keeps getting higher. I have no idea how I will ever be able to move to a new home, because I react to all residual scents and nearly all construction/renovation materials, as well as mold and other goodies found in old buildings. I feel trapped in my home and trapped in my body and trapped in this life. I hate that my illnesses make the lives of those around me miserable, especially my husband. He deserves a better life. We both do.

After all that negativity that I really needed to get out, I still need to acknowledge that it could always be worse. I could be without the people that help me through my life. The only reason I keep living this life is because I could never hurt people that have loved me through all of this. I feel so alone a lot of the time, but I know that I have people that believe in me and care. I know that I am so lucky for that.

Sorry for the rough update. I wish I had better news one of these times.

Tuesday, August 8, 2017

Another ordeal

The last few weeks, I feel like I've been through another endless ordeal, where one thing after another goes wrong without a break.

It started July 20, when I woke up with what felt like a corneal abrasion. I have experience with this, because after my 2013 surgery, I woke up with 2 corneal abrasions. They were very severe, much more pain than the surgery had caused, pain that was untouched by my post-op opiates. This was clearly not that severe, but I would consider it a moderate corneal abrasion. Pain was a level 9 initially. I had severe burning, stinging, tearing, and nasal dripping. I was unable to keep the eye open for three days. The pain and the sinus leakage triggered a mast cell reaction and a migraine. It was horrible.

On July 21, I woke up with a milder corneal abrasion in my left eye with a pain level 7. So, I had severe burning and tearing in both eyes. It hurt to open my eyes or look around. Reading was impossible. So was watching TV and playing games on my iPad. My eyelids were swollen and red. The facial pain on the right side became worse with the barometric pressure dropping and storms outside, so I had a consistent pain level 8.

On July 22, there were more storms and low pressure, so the facial pain continued at the same level. I also still had some photophobia and difficulty opening my eyes.

On July 23, the pain was lessening, although my eyes were still burning. Unfortunately, I was exposed to perfume in a restaurant (we risked going out to celebrate our wedding anniversary). I developed left facial pain that started gradually and worsened overnight.

On July 24, the left facial pain was worsening (from the perfume exposure). I then was also exposed to hospital scents for a doctor's appointment that day. The left facial pain was an 8 by the time we got home. The pain persisted and worsened to a 9 by bedtime. I also had burning in my chest and face (with a temperature of 99.0-which is elevated from my baseline by a couple of degrees).

Over the next few days, there were no new exposures, but my whole body was in pain and exhausted from all of the reactions. And the facial pain persisted at a level 6-7. The eye burning continued, as well. I now believe I have developed chronic dry eyes. I have been using gel and drops many times each day and night.

On July 28, I had widespread body pain worse than usual. I also had nausea, facial burning, and lethargy. Then, in the afternoon, I developed a spell of extreme weakness and reduced consciousness.

On July 29, I decided to try my compounded Zantac (cornstarch in a gelatin capsule) in the afternoon. It was  rough day for various reasons. I had another spell of reduced consciousness/weakness in the afternoon. Late night, I developed left facial pain and a headache. Very late at night, I was extremely emotional with hysterical sobbing until 3:00 AM (probably unrelated to the Zantac trial).

On July 30, I slept for four hours, then awoke with a pounding heart and was unable to sleep more. I had lingering facial pain.

On July 31, I slept okay, but developed a burning face and diarrhea. For some stupid reason, I decided to try another compounded Zantac, to try to confirm which symptoms were related to the Zantac.

On August 1, I only got 5 hours of sleep before waking with low blood pressure (88/55) and a pounding heart which lasted for hours, unable to sleep anymore. I then developed abdominal cramping, abdominal pain, bloating, and diarrhea. I also developed new hives on my chest and face.

On August 2, the Zantac reaction persisted. I had more abdominal cramping and diarrhea, plus burning face. I also had burning, stinging eyes that day, along with lack of balance. Then, I risked cheating on my diet and ate half a taco. It was just chicken in a tortilla, but I developed burning lips and chest, itching throat and ears. I had to take a Benadryl. The extra anti-histamine dried out my eyes too much, and I ended up with another eye injury.

On August 3, it was a stormy day, so I had head and facial pain and nausea from the storm. Unknowingly, I also started a new formulation of Omeprazole that day. (This has been a daily medication for a long time with no known side effects for me. But my pharmacy mailed a different manufacturer with a totally different list of ingredients, 15 new ingredients that were not in the previous formulation.) That day, I developed abdominal cramping and gas, and diarrhea again.  It was a severe cramping sensation in my upper middle stomach area that lasted all day and night. There were also storms that day, so I had a throbbing temple going on as well.

On August 4, I was still unaware of the change in Omeprazole, so I took it again. I had continued abdominal pain all day and night. My stomach became very tender to the touch, unable to tolerate a bra or a waistband. My diet had become mostly saltines and rice.

On August 5, I finally realized that the Omeprazole was probably the new culprit. I had continued abdominal pain all day, but no diarrhea. Without Omeprazole, I developed severe heartburn, for which I took baking soda in water many times to reduce the acid. I also experienced severe bloating.

On August 6, the abdominal pain was less, but still persistent. I went back to my normal diet and requiring Miralax. I had a lot of bloating and was still very uncomfortable. I tried OTC Prilosec for the GERD, until my pharmacy can sort out getting me a new prescription for the previous manufacturer of Omeprazole.

On August 7, the upper middle abdominal pain has still persisted. The bloating and cramping have, too. The pharmacy is arranging for the safe Omeprazole to be ready tomorrow. I really hope everything will calm down after that.


My thoughts:
Diarrhea is a really unusual symptom for me, since I have chronic constipation (since age 18) requiring daily doses of Miralax. So, when I have diarrhea without Miralax, my system is really upset and irritated. I really hope my digestion can calm down soon. I had gotten to the point where I was pretty regular and digesting my food without too much trouble. But now, I'm back to major GI symptoms throughout the day. I would love to load up on probiotics, but I don't have one I can tolerate right now (although I just ordered a new one to try, when I'm up for trying something new).

After 3 weeks of almost constant reactions and symptoms much above my baseline, I am really ready for a break. I desperately want to avoid all triggers and give my body a rest. I won't be trying anything new this week.

This means I still have a few medicine trials to get through before my next immunology appointment. I still need to try the Zantac again, as well as the Ketotifen, but without the capsule. There is a good chance I am reacting to the gelatin capsule. The difficult thing about that is that you can react to some gelatin but not others. The same is true for cellulose as an ingredient in medicine. Some is from wood and some is from cotton. It's possible to tolerate some cellulose and not others. But none of it will be labeled, so it's almost impossible to sort out.

I am still very scared to try anything new, and I desperately hope I can get back to a comfortable baseline before I try it.

I haven't been able to wear my contacts in three weeks due to burning, stinging, sometimes tearing dry eyes. Unfortunately, my glasses give me a headache, so I really hate wearing them all day every day, and I am totally blind without them. I should probably try to see an ophthalmologist, but getting to appointments is difficult, they are always scented, and who knows if I would even tolerate the treatment. I will try to do this when things calm down (I have a long list of things to get done if things ever calm down!).

I have identified a few new triggers recently.

*First, I realized I was getting burning in my chest from drinking cold water or eating hot food. Everything needs to be room/body temperature, which is a real pain and generally less enjoyable.

*Then, I realized I was reacting to blueberries. After eating about 1/3 cup of blueberries, I would develop a spell of reduced consciousness/extreme weakness for at least an hour. These have been happening for a long time, but are still very scary spells for anyone around.

*Next, I replaced my blueberries, which were my only fruit, with grapes. For a while, they seemed to be pretty safe. Maybe, I got too bold in my portion size. But I started developing the same reaction to grapes. Now that I have removed all fruit from my diet, I am not having these reactions anymore. Which is a relief, but really sad. I love fruit! I am hoping finding the right medicine for my mast cells will help broaden my diet.

*Then, I developed a contact reaction to potatoes. Wilma has potatoes as a main component of her diet. Unfortunately, the process of peeling and chopping potatoes now triggers itchy hands and face.

*I know for certain that I am reacting to one of three ingredients in my compounded Zantac (Ranitidine, cornstarch, and gelatin) with a prolonged, multi-stage reaction. Trying it twice was painful, but did make it clear which symptoms it was causing.

*I now know I cannot tolerate a specific generic Omeprazole (Kremers Pharmaceuticals). I now think of my previous brand as the only safe brand, since it's impossible to sort out which ingredient is triggering me in a pill that contains 20+ ingredients. I have to find a way to make sure that my pharmacy only ever fills this manufacturer.

It's hard to see these new reactions develop, because I have to acknowledge that my mast cell disease is continuing to progress. Hopefully, some of the new compounded medications without the capsule will end up turning things around for me. Because it feels like nothing can stop this progression.

It was also really sad to be so symptomatic during my husband's vacation week (although it was really only a few days, since he was at a conference). It was rough on us to try to find something to do for our anniversary, and have that cause me so much pain in the end, too. We did make it to a beach. It was a handicap-accessible beach, so I was able to go in my wheelchair. I even went in the water a bit, although I lost circulation to my fingers, since the water was so cold. We didn't stay long, but at least we can say we got out.

I hope everyone is doing well. I'm still here. Still plugging along. I've had some really depressed days, but otherwise I'm managing. Just exhausted from the constant fight.