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.

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.

Saturday, July 15, 2017

July 2017

I have a bunch of posts in mind to write, but there is enough going on that a standard update is needed first.

I had some major reactions in June.

On June 19, I got a bug bite. I didn't even notice the bite itself at first. Just my body's reaction to it. It was the day I developed a fever of 101.5, severe joint and muscle pain, head/facial pain, abdominal cramps, nausea, absent appetite, tachycardia/pounding heart, low blood pressure, reduced consciousness with intermittent loss of consciousness, and marked weakness. At the time, I thought it was a reaction to going to a doctor's office. I now believe this was mainly a reaction to a spider's venom, followed by an infection, complicated by a mast cell reaction.

When I saw a GP one week later, I still had a fever, and the bite was rather grotesque looking. For fear of triggering another reaction, I delayed taking the prescribed antibiotic for a day. Very luckily, my fever went away, and the bite started quickly fading. Since then, the fever has not returned (thank goodness). I know many people will suggest this, but I'm told this didn't really follow the pattern of a tick bite/Lyme infection. I will make sure to get re-screened for it, but I truly believe I would be feeling worse by now, when really, I'm back to my baseline.

I know. It got pretty terrible looking. It never hurt or itched too much, but it was very hot. The doctor reassured me that it sounds like a spider bite.

On the last day of fever (June 27), I had another bad reaction. I believe the triggers were multiple nights of poor sleep, as well as a formulation change for my probiotic (Culturelle has additional fillers now). There could have been other triggers, but it is sometimes really hard to sort it all out. I was struck with a sudden, intense headache, followed by a hot flash. In the following 6 hours, my vitals tanked. I spent a long time with a reduced state of consciousness (basically a stupor), with some intermittent loss of consciousness. Even after medication to raise my blood pressure and extra salt and fluid intake, my blood pressure was 80s/50s the rest of the day, along with a low heart rate around 50 (not typical of a POTS reaction). I had shortness of breath with movement and upright posture, burning chest, heart pounding, and developed a throbbing migraine at bedtime. I still don't know the true trigger, although often MCAS reactions happen when you stack triggers. Individually, they may not trigger very noticeable symptoms. But when stacked together, they can trigger a major reaction. There is also a bucket analogy to explain this. Each trigger adds to the bucket, and you don't get symptoms until the bucket overflows. (I still love this article to explain the phenomenon of cumulative triggers and why you can tolerate something one day but not another day: http://www.mastattack.org/2016/04/the-devils-arithmetic/)

Anyway, I had a follow-up with my allergist on July 7. The doctor wasn't as proactive as I'd hoped regarding treatment. She only wanted me to take more of my current antihistamines. Luckily, I got up the nerve to ask about a few other treatments, and she was amenable to trying them both, although she was not optimistic. She told me she only has three other Mast Cell patients, so she isn't sure what else to try. But, she agreed to prescribe two medicines to be compounded. One is Ranitidine, which an OTC H2 blocker, used to stabilize mast cells. I have to discuss with a pharmacist the need to use a minimal number of fillers. (This was not included on the prescription.) The other one is Ketotifen, which is commonly used in other countries, but not FDA approved in oral form. It is supposed to be an H1 blocker as well as a mast cell stabilizer. Again, I need to find a compounding pharmacist to help me figure out the least and safest fillers we can use to compound it. Different compounders have access to different medications, and different willingness to compound in new ways. Also, prices can vary wildly, because the pharmacy sets the cost and doesn't take insurance. So, I haven't started the process yet. Once I do, I'll have to trial one medication at a time, and desperately hope that I can tolerate them, and that they have some kind of positive effect.

I've been dealing with a few other triggers this summer. One is that I can no longer tolerate iced or cold water. It adds to the burning sensation in my chest. I'm getting used to drinking room temperature water (about a gallon a day is needed).

A huge problem in summer is outdoor smoke. Grilling, bonfires, and meat smokers. All of it kills me, and makes me glad I now have an EpiPen. It's hard, because I can't take Wilma outside if it's in the air. And we have to avoid even opening doors to outside. I get immediate pain in my head and coughing/wheezing from even a single breath of smoke.

Also in the summer, I have to run the A/C a lot of the time. We have a wall unit. Unfortunately, it doesn't filter out all smoke. That puts me in a really scary situation, because there is nowhere to escape. So, I feel on edge whenever the A/C is running, because I don't want to let anything dangerous into my home. Even a person walking past with a cigarette while the A/C is running can ruin my entire day. But, I have to run the A/C. You don't want to see me when the indoor temperature is higher than 76 degrees (I develop presyncope with reduced consciousness.) So, I have to risk it a lot of the time.

Finally, I've started having trouble just sitting in the family room at mom's house. The room is connected to the attached garage. I will randomly start smelling faint gas fumes, and a reaction slowly develops, getting very severe some days. Having to avoid the family room just keeps me even more isolated. We even stopped using the door to the garage, but I can still smell the fumes.

I'm also reacting to fragrance free sunscreen now. I wish I could find a sunscreen with truly no scent, but then it probably wouldn't actually work. I don't personally wear any. I just cover up with clothes (which does not help my heat tolerance). But people around me who spend a longer time outside obviously need to use it.

It drives me crazy to constantly have the world attacking me, and to see my sensitivities continue to progress.

Anyway, that's what's new. I am still so grateful for my safe havens. Luckily, my bedrooms in each home are both still safe spaces, which I have to protect carefully. I am so lucky that the people I live with help me to keep it that way.

I'm also so lucky to have my little companion, Wilma. She is the most low-maintenance dog I've ever known, and we are very attached, spending nearly 24/7 together. I am allergic to most dogs, but I don't believe I react to her.

I'll post again soon, hopefully. Thank you for still reading and still caring about my lonely saga.

Tuesday, June 20, 2017

Another diagnosis...finally.

Well, I have some news. I got in with the new allergist 2 weeks ago. She completely believed me about all of my symptoms, not blaming any of them on anxiety. She didn't waste time and immediately ordered comprehensive testing for MCAS (Mast Cell Activation Syndrome). She ordered several blood tests and a 24-hour urine collection. I don't have all of the results yet. But, the doctor called me herself on Friday afternoon when the blood work came in. She found multiple elevated levels of mast cell mediators in my blood. Clearcut evidence that I actually have this disease that I have suspected for four years. She said it was so conclusive that I don't even need to bother with the urine collection.

The best thing about this diagnosis is the validation that I am not imagining my symptoms or my progression, and that someone who knows what they're talking about has confirmed this. It is still a new diagnosis, so plenty of doctors are not yet even aware of it, much less able to recognize, test for, diagnose, or treat it. But it is such a relief after so many doctors have told me that my symptoms must be anxiety, or some sort of conditioned response (Thanks to my condescending allergist for that one). It's hard not to believe they're right after you've heard it multiple times. But I finally know that I am not imagining or catastrophizing any of my symptoms. When I am exposed to any type of trigger (environmental, medication, food, temperature, weather changes, vibration...anything my body decides is a trigger), my body goes through a cascade of symptoms due to the release of specific chemicals from my mast cells. My body believes it is being attacked, and responds as such. This condition is often progressive, as in my case. It is also notoriously difficult to treat, because so many potential treatments end up becoming triggers themselves.

So, that is the hard thing about the diagnosis. Everything that I have suspected is happening in my body is really happening. I knew I was suffering severely, and I have been mostly housebound for 6 months, and have had to avoid interactions with most people for quite a bit longer. This certainly explains why it is happening to me. The hard thing is figuring out how to stop the progression. I am lucky, because I do not experience anaphylaxis. It is now pretty confirmed that my reactions to cigarette smoke and running in high school and college were in fact anaphylactic reactions. Never asthma. Not "Vocal Cord Dysfunction." Which explains why the treatments never helped. But the EMTs giving me a shot of Epi always resolved the issue. I now have a prescription for an Epipen, because in my state, I could escalate to anaphylaxis at any time.

But let me tell you, even without throat closing anaphylaxis, my symptoms are becoming insane. Each reaction seems more severe than the last. I have a couple of recent examples of reactions that really demonstrate this:

About a month ago, I decided to try taking Pepcid. It is an H2 blocker, so it is helpful in treating MCAS. I suspected that I wasn't tolerating Zantac, so I discontinued that and tried the Pepcid. One 12-hour pill. My reaction included:
-Insomnia for 3 days
-Sensation of a fever, alternating between hot and cold, with no measurable fever
-Pounding heart for 3 days
-Full-body itching (pruritus)
-Diarrhea for 2 days (only able to eat white rice)
-Swollen face (edema)
-Burning face
-Burning throughout my torso
-Headache/facial pain

A week and a half ago, I tried a new H1 antihistamine my new allergist prescribed. It is a prescription called Cyproheptadine, and generally very well tolerated. I was still cautious, so I tried only 1/4 of the lowest dose. My reaction was almost identical to the Pepcid reaction, although the diarrhea and insomnia were more severe. I slept less than 30 minutes, despite heavy sedatives.

Then came yesterday. A hellish day I won't soon forget. I had to leave the house. I was overdue for a psychiatrist appointment. It was this office that made me miss the holidays last winter. But I had to go, because he prescribes my sleep medications. They are controlled, so no one can prescribe them without regular appointments. So, we had to leave for the office at 12:45, which is waaaaay too early for me to be leaving the house (sounds ridiculous, but true). There were also storms around, which really agitates my mast cells. I wore my respirator the entire time. Yes, a full respirator. Not just a mask. A ridiculous respirator. I did not smell anything through the respirator. Unfortunately, the reaction was insane. On the way home, my pain levels became very high, especially in my head and my sacrum. We got home, and all I could do was curl up in fetal position and moan. I crawled into bed and kept moaning. My mom came to check on me and noticed that I was hot. Really hot. I developed a fever that reached 101.5 by evening. (I have normally low body temperature, and normally do not get a fever with infection, so this was very notable for me.) So besides the fever, I experienced:
-Severe, widespread muscle and joint pain (especially sacrum) - Pain level 9
-Skin sensitivity
-Headache/Facial pain - Pain level 8
-Abdominal cramping
-Complete lack of appetite
-Tachycardia/Pounding heart (heart rate 100-120 for over 12 hours)
-Low blood pressure (90/60)
-Intermittent loss of consciousness
-Bladder pain
-Marked weakness (unable to lift my purse or my 7 lb. dog)
-Insomnia, because who could sleep through all of that?
Today, I woke up and still had a bit of fever, but it eased off as the day went on. We were pretty sure I was getting really sick, having contracted a flu or virus or maybe a urinary/kidney infection. But, if it were any of those things, I would still be sick tonight. And I'm mostly just back to my usual, crappy state. So, it was obviously a major mast cell reaction.

I feel completely traumatized by these reactions. I honestly don't know how I will make myself try another medicine or enter another building ever again. I am terrified at the amount of suffering I go through from such small things, and at the progression of my illness. The pain and fever are so difficult, because I cannot tolerate anything that might ease them. Anything!

A brief list of my medication intolerances:
Sulfa antibiotics
Wellbutrin/Cymbalta--seemingly all SSRIs and SNRIs are out
Nsaids--everything from Advil to Aleve to Toradol to Indomethacin
Triptans--every migraine medicine
Vitamin B2
Most probiotics
Cromolyn Sodium--at least the generic

So, in general, with MCAS, it is thought that when someone is reacting to most medications, they are not reacting to the medicine itself, but to one or more of the fillers/excipients/inactive ingredients. Most likely it is a commonly used ingredient. (Most medications contain between 10 and 20 of these extra ingredients...some even more.) Most doctors don't believe it is possible to react to such tiny traces of ingredients. But MCAS specialists see it all the time. And it certainly seems to be the case for me, since I can have the same exact set of symptoms from so many different medications. So, the next logical step seems to be to try to order compounded medication. It is special ordered through a pharmacy to contain no fillers, or only 1 safe filler when necessary. There are a few problems. One is that insurance companies don't cover compounded medication, even when medically necessary. The other is that most doctors won't even consider prescribing these medications. My new MCAS-savvy allergist doesn't seem to prescribe them. But I may have to convince her to try for me.

The other problem is that I could be reacting to one or more of my current medications, and that could be keeping me in a reactive state. It feels almost impossible to sort out which one is problematic though.

Another issue is that the only mast cell stabilizing medication approved by the FDA is Cromolyn Sodium. I have tried the generic. I did not benefit from it, and once I reached therapeutic doses, I seemed to be doing worse. (Although it's hard to say, because my condition has been progressing all this time.) I have heard of people that do poorly on the generic version, but the brand name version is very helpful. So that still may be worth a try. Again, my doctor would have to agree it's worth a try.

So far, I know that my blood contained elevated levels of Prostaglandins and Chromogranin A. Just these two chemicals explain so many of my symptoms: burning, increased pain perception, sleep dysfunction, joint and muscle pain, nerve pain, changes in heart rate and blood pressure, bronchoconstriction, etc. And mast cells release any combination of over 200 chemicals in any given reaction. Most of them cannot be tested for in a commercial lab yet. So, the array of symptoms this can cause is staggering. I will explain much more about this in my next blog post. (Hopefully, I'll get to it soon!) I plan on the next post being explanatory about MCAS, especially information I've learned in Dr. Afrin's book Never Bet Against Occam. I am still on a 2+ year wait list to see Dr. Afrin. He is leaving the University of Minnesota to start a mast cell clinic, so there will be a bit more of a delay than expected. But I am so relieved I have a local doctor to help me in the meantime. I am so lucky to belong to so many different FB support and awareness groups that have helped me to locate this doctor and learn that I am not a freak. I am one of them. I am extremely isolated, but I am not the only one going through this insanity. In fact, Dr. Afrin believes it is an epidemic. I learned that with EDS and POTS, along with my progressing chemical reactivity, MCAS was the natural explanation. They are genetically linked. I hope to get the explanatory post up soon. In the mean time, for anyone curious, the blog mastattack.org is an excellent resource written by a medical researcher.

In particular, this post explains the connection between EDS, POTS, and MCAS really well:

Also, this post is amazing:

For a simplified version, I really like this blog:

Especially this post:

I am incredibly lucky to have a core support group that are helping me to maintain my bubble-like existence, protecting me from triggers whenever possible. These are the people that are forced to live with me: my husband some of the time, and my mom and stepdad the rest of the time. I would absolutely not be here without them and their support. They have believed in me long before this diagnosis. And I can never thank them enough for it, because I know it sounds crazy that I have another rarely heard of diagnosis. It is crazy. But it's probably not that crazy, because it's possible that the mast cell activation has been responsible for every symptom and diagnosis in my lifetime. Nonetheless, I could not survive this without their help and endless accommodations. And....I'm crying now, out of gratitude with a hint of despair.

Thanks for reading. I'm hopefully going to go sleep now, since I barely slept through my fever last night.