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."
