Well, I last posted six weeks ago after enduring many doctors' appointments and various chemical exposures. I believe there was one more exposure after that, which was a severe reaction to a dusting spray called Endust Free. It took some time to figure out what was wrong since it had no obvious scent, but I knew that something was wrong immediately. My reaction included feeling very cold and then burning all over, exploding head feeling, burning eyes, agitation, insomnia, pounding heart, and full body vibration. These symptoms lasted for two full days and nights. So that was March for me, and I have not been the same since.
Starting middle of March, when I visited with my brother, I developed new food reactions. It quickly escalated into a crisis that I have not gotten out of. I had nine safe foods prior to this: organic toasted oats cereal, almond milk, rice cakes, peanut butter, quinoa, carrots, broccoli, potato chips, and butter. I first developed a reaction to peanut butter. Soon after ingestion, I developed a runny nose, abdominal bloating and pain, a pounding heart with heart rate elevation followed by presyncope and reduced consciousness for up to three hours. Following the reduced consciousness, I developed facial burning, agitation, flushing, and a feverish feeling. The symptoms would pass, but they seemed too severe to continue eating peanut butter. In addition to the new food reaction, my baseline state also worsened. The burning inside got so bad it was reaching a level 8 late at night every night. My scent reactions began happening daily. My facial pain was reaching a level 8 most days as well.
So, my mast cells were constantly degranulating, and my condition was deteriorating. I was miserable. But I was also starving without peanut butter. I immediately started doing food trials, trying to find a replacement for peanut butter. I needed to replace the fat, protein, and calories in my diet since so much of it came from peanut butter! It was an absolutely key part of my diet and key to my well-being. I was able to digest it without much trouble, and I was able to get a good amount of calories in without causing too much fullness or GI distress. So, I tried similar foods first.
I tried Sunbutter the first day. It's like peanut butter, but it's made from sunflower seeds. This gave me bloating, nausea, and worst of all, the burning inside for 8 hours. Plus, I felt agitated and couldn't sleep. I also had vertigo and trigeminal pain, but that is most likely attributed to the weather. (It can be really hard to sort out!)
The next day, I tried just butter on my rice cakes. At least I would get fat and calories, right? And I could figure out a protein replacement later. Well, that actually went terribly, despite previously tolerating (much smaller amounts of) butter. I got burning inside for a few hours, but I also got really bloated and developed a very raw mouth. My whole mouth felt like it had been sandpapered. In the following days, I tried returning to my previous amount of butter, just melted into my veggies, but I got the raw mouth every time. So that's how I lost my next food!
I then tried a scrambled egg for two days. That was one of the last foods that I lost before my current diet, so I knew there was a chance of tolerating it. Unfortunately, it caused major bloating and itching, and the itching persisted overnight, messing with my sleep again.
Finally, I tried almond butter. This was the worst reaction yet, probably because my body was already on high alert from all the reactions. (I know it's super weird that I can drink almond milk, but please don't tell my body they're made from the same thing. Maybe it won't notice!) Anyway, I developed burning lips and crotch, runny/itchy nose, and I was awake until 5:00 AM with insomnia, agitation, and heart pounding.
At that point, my body was in full-on crisis mode. I couldn't handle anything. Just eating and drinking and moving made me worse. Every symptom I have went into high gear. I was suffering from agitation, burning pain, migraine pain, insomnia, pounding heart all night, and all the rest. So on April 1, I gave in and just started eating my dinner foods for lunch and dinner. I no longer had post-lunch symptoms besides some trouble digesting "real" food so early in the day. Basically, this diet increased my dietary fiber, and that was too much for my system to handle. So, I had to learn to puree my vegetables to try to ease the burden.
I also tried a peanut butter desensitization, eating just a teaspoon a day, every other day of homemade peanut butter. But when I escalated to two teaspoons in a day, symptoms were worse than ever before, so the desensitization not only failed, but actually made my sensitivity worse.
So I've been sticking with the food plan that got me out of full-on crisis for now. My safe foods are now: toasted oats cereal, almond milk, quinoa, pureed carrots and broccoli, and potato chips. I am hungry all the time. I dream of food. In just the first week, I lost two inches around my chest and my hips. A month later, I have lost three inches all around. My clothes hang off of me. I am decidedly underweight with an unhealthy BMI. (Although my stomach is often bloated, so it can be hard to see how bad it is.) And I don't know how to fix it. I have a few foods to try (brown rice protein powder, coconut oil, coconut butter, and hard-boiled eggs). But I am not stable enough to try anything new.
One week, my brand of almond milk wasn't available, so my husband bought my second choice, which has always been fine for me. Well guess what? Now, my body will not tolerate it. The only difference in ingredients seems to be sunflower lecithin, so it seems clear that I can no longer tolerate anything sunflower. It seems like I start reacting if I have too much of any one thing sometimes. But this just shows that I am still declining.
Plus, with the temperature rising and the neighbors starting grilling season, I am reacting constantly. I am often not safe anywhere. All it takes is one neighbor on the block grilling, and that tiny amount of smoke seeping into the house to ruin my week. Yes, week. Not day. Week. We're working on sealing up doors better, but nothing is perfect. And all scents are amplified in the heat. The smell of the asphalt in the parking lot, the smell of laundry that seeps in from my condo's hallway. Everything is stronger and suddenly a huge problem again. And this is not even dealing with air conditioning yet, which makes my condo mostly unlivable because whenever there is smoke, it blows it inside. Not to mention the bug bites that are coming to ruin more weeks of my life.
I also have a whole saga going on with prescriptions right now. Two of my three pharmacies, the ones that special order specific manufacturers for me, have told me that they will no longer be allowed to do that. It doesn't matter if my doctor specifies the medically-required manufacturer, somehow, because they are generics, not brand name drugs. So in any given month, probably sooner rather than later, I will be unable to refill my prescriptions. I have sought out other pharmacies and have leads on a few that might be more willing to order them. But I am totally at their mercy, and I have no idea when this will happen until I try to refill. So each medication could become a crisis of its own. I am totally powerless here.
In addition, the medicine that Dr. Tobin prescribed, Zyflo, was not available for compounding. Plus, I haven't been stable. So I have a bottle of the brand name stuff sitting here, but I haven't been able to try it. This is a $4,000 bottle of medicine. I got it for cheaper, but not cheap enough to actually refill monthly. But it really doesn't matter. I don't know when it will matter because I have no idea when I will try it. It seems like food trials are more important, but I would need to be less reactive first.
I also just seriously cannot tolerate more symptoms above those I'm experiencing from the crazy weather changes and barometer messing with me. The pain in my head and face and joints has been unbearable. So I certainly can't risk making anything worse. My pain reaches an 8 most days, and my digestion has not normalized. I am usually bloated and feeling like my lower abdomen is stuffed while my stomach is suffering from intense hunger.
So for now, I seem to keep shrinking away and feeling like I'm starving and unable to try to fix it at all. All I can do is survive day by day.
Wilma is definitely still struggling, but we have her on a few new supplements that seem to be helping with her nighttime psychosis from dementia. The biggest help has been CBD, which is also helping her appetite. She still looks skeletal, but that should change if her appetite stays up. This symptom of hers is definitely interfering with my sleep, which doesn't help anything. But hopefully, we'll keep finding ways to ease her troubles.
I'm sure so much more has happened, but I am not hypomanic how I was last time I wrote, so I don't have racing thoughts propelling me forward.
So, a few assorted thoughts, and then I'll go.
Someone in my support group asked what you wish people new about your chemical sensitivities. My answer was this: "My biggest one is that the level of chemical sensitivity can be so much more than you could imagine. The amount of a trigger can be undetectable but still debilitating. The other thing is that I don't just suffer while being exposed to a trigger. I can suffer for weeks. And if it's bad enough, I may never get back to my previous baseline. I may be permanently damaged by some brief exposure."
Then, I wrote this about being so reluctant to try anything new: "As long as I avoid ALL triggers: food, environments, medicines, exertion, people; as long as I stick to my 3 safe people and my 7 safe foods and my 2 safe-ish home environments, I can just barely tolerate being alive. But every time I leave the house (including going to doctors), or try a new food or a new medicine or visit with a new person, I end up triggering a progression of my disease that I often don't recover from. I lose safe foods and medicines and react more to my environment. So I am officially terrified to change anything for fear that my daily existence could get even worse. I have just seen myself get worse so many times from so many things, and I cannot bear the thought of existing any worse than this. I am so afraid to rock the boat."
Finally, there has been a lot of talk lately about "brain retraining" and stuff like that in mast cell and chemical sensitivity groups. It is thankfully a banned topic in some of them. It's basically teaching your body not to react to triggers through reprogramming techniques. I truly do not believe in this approach to my condition for so many reasons. First, exposing myself to triggers would just allow me to progress even further by exposing myself to danger. Even in small doses, my reactions tend to progress with each exposure. Symptoms of anxiety related to exposures could improve. The propaganda around these often very expensive programs is really huge, so there are miracle cure stories out there, plenty of them.
For me personally, I don't believe in this treatment. I am thankful that I don't suffer much anxiety on a day-to-day basis. I'm in too much of a fog to feel anxious. I even forget that I have tried a new food or a new medicine until I am already reacting. So I don't see how my mind could be creating that response. I also react to unknown triggers so much of the time and have to figure out what the trigger could be. Then later, I identify it, and it all makes sense. And these are reliable reactions, replicable. I didn't even know there was a trigger, so I know my mind didn't create that reaction. It also makes perfect sense to feel anxious when returning to a situation that has caused immense suffering in the past. That's normal. And I am pretty good at taming my nerves and just taking things as they come. Many years ago, early on in illness, I questioned myself a lot, basically blaming myself for my symptoms...because doctors didn't know what was wrong, and they blamed me. I was young and trusting and didn't know better, but they still damaged my ability to trust. It was medical gaslighting for sure. It has taken many years to get to the point of trusting myself again. I now know to take my body's cues seriously. I do get bouts of anxiety out of nowhere, but I know that is a sign of a reaction starting, not a sign that I'm imagining a reaction.
I am very pro-mental health care by licensed professionals. I have been treated for depression for most of my life. I previously suffered generalized anxiety, and I am so grateful to not currently have that burden. But I believe in medicine, and I believe in therapy. What I don't believe in is programs made up by non-professionals and sold as snake oil to the masses of suffering people. If someone truly believes that their anxiety is the driving force, and their thoughts are causing their symptoms, then they should seek out treatment for anxiety. And maybe these programs that involve walking in circles while repeating mantras and reciting comforting statements to yourself would be helpful for them. Who's to say? Anyone who is helped, I am so glad for them. But I don't approve of the way it is marketed and sold as a cure to all that ails you.
My mental health is stable. Just ask my actual doctors. They know my symptoms are real and driven by mast cells. I finally have ample laboratory evidence proving it. And I have expert doctors who attest to my conditions. So thankful to have reached the point that I have real, tangible evidence explaining every crazy thing my body puts me through. Obviously, I wish there were more solutions, but explanations are a good start. I even had my doctor recently write me a note to get out of jury duty, declaring that I am housebound due to illness. This is very real, and no one who knows me questions my sanity, thankfully. I feel so bad for those that are still going through the process of diagnosis and still seeking explanations and validation and being accused of faking it or being crazy. It happens way more than people realize. And I find that this kind of treatment is just another angle at toxic positivity and magical thinking. (Here's a great article on that issue: https://blogs.psychcentral.com/hidden-disabilities/2019/05/toxic-positivity-its-a-thing/)
So, given all that I've been through, I don't have any doctor's appointments scheduled currently. I will need to keep seeing a few doctors annually, but I will avoid any more than that whenever possible. Only this degree of extreme isolation seems safe for me at this point. Very unfortunately, I need my annual exam with my gynecologist this month if I want to continue birth control pills that treat my PMDD and hormonal reactions. It's unavoidable, and very exposed, and it will make me very sick. I just hope I don't gain any new symptoms or lose any more foods. Have I mentioned? I am so hungry!!! But it is a difficult appointment because it is a scented office, and my skin will all be exposed. Skin exposure is so huge. A respirator can't help you with this. A recent study came out showing that most of carcinogen absorption from barbecue smoke actually comes through the skin, not through inhalation as previously assumed. Here's an article explaining that: https://www.medicalnewstoday.com/articles/321884.php
I believe that this skin absorption thing can explain many chemical reactions, not just smoke. Your skin absorbs everything in the air, and then it is processed by your body and ends up in your bloodstream and your urine. That's how you can react even when wearing a respirator. (Although I still swear that plenty of smells get through my industrial respirator. Strong perfume is the main one.)
I am so sorry for the disjointed nature of this post. You can see how confusing it can be to live inside my brain. I hope you are all having a good spring. Stay safe. Don't start too many fires 😊. And if anyone knows how I can fill the Game of Thrones-sized hole that will show up in my life in two weeks, please let me know!
Monday, May 6, 2019
Tuesday, March 19, 2019
Taking advantage of the hypomanic reaction
Time is a strange thing when you live with constant sickness and pain. Everyone talks about time flying, and they can't believe it's already been a year or ten years since some milestone. Well, I can't really relate to that feeling at all. Since middle school, I have always dreamed of having a remote control that could fast forward through the bad parts. The problem is, there wouldn't be much left. (Yes. I know they made a movie about this.) It is just so difficult to see people building lives and moving forward, having kids, and watching their kids grow. I'm sure that would make time seem to fly. I'm sure it would make life seem more worthwhile too, more fulfilling, more meaningful. I mean, the only way in which I would want time to slow down is in the aging of loved ones. But I want to slow down aging, not time. Time is slow and torturous. I guess the saying, "Time flies when you're having fun," works in reverse as well. Time drags like hell when you never have fun.
And my life is really not fun. I try to find little snippets of fun or happiness or even joy and hold onto them, but they are so few and far between. It just feels like an endless uphill climb, or a downward spiral. It seems strange that going downhill and going uphill are both pretty bad things. Like, if an uphill battle ("a task that is very daunting from the outset and continues to be challenging" - https://idioms.thefreedictionary.com/) and a downward spiral ("a situation in which something continuously decreases or gets worse" - https://www.merriam-webster.com/) are both really bad. You really don't want your life going either way. This suggests to me that many of us really desire stability. We desire homeostasis. And an unpredictable illness takes away any sense of ease or comfort in your situation.
Why so loquacious tonight? Well, I'm currently having a reaction that is causing over-stimulation. My brain is racing, and my speech is pressured. I feel so agitated. And that's all on top of the mind-blowing pain and burning. So I decided to write it out tonight while I actually have something to say. (Most of life is in a fog, so at least this brings things into focus for a bit.)
This last month has been hard. And whenever someone asks me how I'm doing, that's how I usually answer. It's the least pessimistic answer I can come up with that is still honest and genuine. But this last month really has been a challenge. Three hospital-based doctor's appointments in under a month. That's way too much outside exposure for my body to absorb and tolerate. But they needed to be done, each one of them.
First, I saw Dr. Barboi's PA. He is my autonomic neurologist that specializes in dysautonomia/POTS. But he is too busy to see follow-up cases anymore, so I saw his PA. She was nice and interested and pretty thorough. It was just an annual appointment so that I remain his patient. And I need to remain his patient because he understands my illness, and there may come a time that I really need his help. So, we were inside the hospital for two hours. I wore my respirator the whole time. This thing is ridiculous-looking, but it really does help me with one thing. It prevents the severe facial pain and headaches that I get whenever I'm in public. It's not perfect, but for that alone, it is worth it. The more I can prevent that pain, the less prone I am to the next trigger for the pain. So I can go longer without having any facial pain, sometimes a week or more at a time. Usually the weather or some unavoidable trigger ruins it, but at least I can avoid it when I go to the doctor. Unfortunately, I still suffer the rest of my symptoms for weeks following the appointment. I can only protect my trigeminal nerve, really.
Anyway, nothing in particular came out of this appointment. Honestly, it was the same as last year. Dr. Barboi wanted me to see Dr. Tobin and wanted me to try the chemo drug called Imatinib. I also got my handicapped placard renewed. That was it. But I have portal access to him for the next year, so that's worth a lot.
A week later, I had my long-awaited appointment with Dr. Tobin. This was quite an ordeal. It was a morning appointment in Oak Park. I don't do mornings. So I only got four hours of sleep the night before. I was a wreck. There was a wait inside a smelly waiting room. Even though I can't smell most things through the respirator, I can still literally taste the disinfectant smell in the air. The taste lasts all day. It's crazy, I know. Believe it or not. But it happens every time. And every hospital has that same disinfectant everywhere, filling the air. Anyway, this time was three hours inside the hospital wearing my respirator. I spent a long time talking through my history and my symptoms with the fellow that I saw. She was also very nice and interested and thorough. I felt that I explained everything pretty well.
Dr. Tobin came in at the end, and she definitely believes I have the right diagnosis. But she was not particularly optimistic about my treatment. Not hopeless, but not hopeful. I appreciate that actually. Don't get my hopes up so high just to be dashed again. Basically, she has a few ideas that haven't been tried yet (although certainly nothing novel to me--I know this stuff like the back of my hand). The conclusion of the appointment was that we were going to repeat some labs (I have gotten most of the results back. Same elevations in blood and urine indicative of a systemic mast cell activation disorder), and that we were going to trial a compounded medication that I haven't tried before. It is in the same class as Singulair (asthma medication), but a different drug. We will get it compounded to avoid fillers and start with a lower dose than usual. It won't necessarily make any big change in my condition. It almost certainly will not. But if for some reason I can tolerate it, we could start "chipping away" at my hyperactive mast cells. Basically, that's her approach, to keep trying things little by little and see if we can chip away at this illness that is wreaking havoc throughout my body.
The only problem that has come up is that so far, no compounding pharmacy has access to this drug. They are not able to compound it. So it may be a dead end. If it is, she had a few other ideas, but none that I'm especially excited about. Maybe a medicine for nerve pain, like Gabapentin. But I haven't had luck with it in the past. Lots of side effects for little to no relief. And it would do nothing to actually stabilize my crazy mast cells. Maybe aspirin (which doesn't seem smart long-term). Maybe regular IV fluids (which is hard on the veins). Maybe even IVIG treatment (but I don't really want to strengthen my immune system. I don't even get infections easily.)
A great thing that came out of this appointment is that Dr. Tobin and Dr. Barboi are now consulting together on my case. They may share ideas with one another. And those are two brains that I definitely want on my side. They both agreed that my burning pain I get, often in my torso, but also in my face, in my mouth, in my eyes, and in my crotch are a form of neuropathy. Not typical small fiber neuropathy or peripheral neuropathy, based on location, but still neuropathy. Atypical, as usual.
Those were the big appointments. And oh man, did I suffer for them. My list of symptoms in the two weeks following the appointment at Rush is a page long. To summarize, I had widespread burning, itching, deep cough, headache over my eyes, palpitations, body pain, nausea, bladder pain, tachycardia, diarrhea followed by constipation, a rash, hair loss, crawling skin, lethargy, brain fog, and gastroparesis. Those were the big ones. All because I spent time in a doctor's office. I was grateful that insomnia did not accompany this reaction, and neither did trigeminal pain. But it was still absolute misery.
And as usual, as soon as I start feeling like I could be getting back to homeostasis a couple weeks later, I had another appointment. The last one was just a check-in with my psychiatrist. It went fine. No changes in meds, like usual. Thankfully, he agreed that we can scale back to 6-month appointments instead of 3-month. Our insurance is not covering any of the visits, so it's a relief for more than one reason that I only have to go twice a year instead of four times a year as I have been. Too bad he's a resident, so they only stick around for a year or two before I have to switch again. I like him. I wish I could see more of him, but like most things in life, that's just not an option.
So, I had a horrible weekend following this appointment. The usual terribleness, with especially bad lethargy and brain fog. I was practically catatonic for a lot of the weekend. Then, Monday came, and I felt a bit like a human again. I actually felt pretty great for me. So, it was really a good time to seize on the chance for a trial visit with my brother. He and I are very close, but we have barely been able to see each other in the years since my mast cells lost their freaking minds. But he has put in enormous effort to be able to visit with me again. He has changed his entire routine. He uses all fragrance free products that I know are safe for me (because they are also used by either me or my mom or my husband or my stepdad--my safe people). He also freaking quit smoking cigarettes for me (and for his health, too, I assume)! I mean, that is dedication.
I wanted so badly for it to go perfectly and for me not to have a reaction to being near him. But of course, my mast cells had other ideas. The fact of the matter is that I have become so incredibly sensitive to so many things, but especially laundry products, that I just can't be around almost anyone. Clothes (and skin and hair) hold onto so much scent. And laundry products these days are, like, military grade. They are incredibly sticky scent molecules, and they basically never wash out. Not enough for someone as sensitive as me. And every exposure seems to lead to a worse reaction. So, I started feeling the pressure in my face and a sore, scratchy throat. I could also taste the very faint laundry smell. To be clear, he uses a fragrance free detergent and no fabric softener on all his clothes. It just isn't enough to wash away the old scent molecules. I ended up with quite a reaction. I went up to my bedroom to escape and deal with the fall-out. The trigeminal pain has been around an 8. I've had excess mucus and a sore throat. I've had burning (neuropathy) in my face, my lips, my eyes, in my mouth, and in my crotch. (Pain level 7-8). It then progressed to agitation, skin crawling, pressured speech, racing thoughts, nausea, global head pressure, and vertigo. I am in an absolutely miserable state. And it's only been 8 hours. Who knows what will come in the following days? Surely, a crash into lethargy and prolonged symptoms. All from some barely there laundry product residue. This stuff is literally poison to my body. I am poisoned.
Worst of all, this stuff is everywhere. It's the main reason that I can't see most people. It makes walking outside hazardous because every house and apartment has this stuff pumping out laundry vents into the air every day. We have a plan to try again. We will buy him a set of clothes to wear and be washed at mom's house only for our visit. This will eliminate the laundry product residue problem, and maybe we'll finally be able to see each other again. Maybe. I don't trust my body at all. But we will keep trying because it matters. Relationships matter. And I'm trying to salvage the ones that aren't totally gone and maintain the ones that matter so much. This illness is so incredibly hard on my loved ones. My husband deals with so, so much. He shares so much of the burden with me. He has to cope with so many of the same losses and limitations. Our life barely even feels like a life sometimes. And he keeps pushing through, keeps making accommodations, and stays by my side. It is hard to know that this illness brings so much pain to anyone that I am close to.
Life feels like a series of landmines to either be avoided or survived. It's one thing after another. Seriously. My pillow picked up a scent from my car, so I washed it, like usual, in fragrance free detergent (Biokleen). Well, after that, it smelled like chlorine. I have washed it and soaked it in vinegar, in baking soda, in vodka so many times. And it is still not totally gone. (You would be surprised how useful cheap vodka can be.) I don't know how it happened. I guess I'm looking for a new detergent again. And a new pillow. New anything is really a landmine.
Then, there were ants. Our apartment got infested, and I was having to vacuum twice a day to keep them away. But I react to the vacuum because it smells like burning rubber. These particular ants seemed to sting me. I mean, the ant attached itself to me, and it felt like a bee sting and continued stinging for at least an hour after the bite. Then a welt would show up the next day. I don't know what kind of crazy ants these are. So, we tried all the natural methods but eventually had to spray with bug repellent. No scent, but still unknown if it contributed to my symptoms. It certainly adds to the chemical load. I wasn't there for the spraying. My hubby does things like that while I'm away at mom's during the week.
Our apartment is generally bad for my health. I am generally sicker there, although I do better when there is fresh air outside, and I can ventilate like crazy. Basically, I do best when the apartment is a wind tunnel. You know you want to live with me. (Don't forget about the extreme food and cooking and product restrictions!)
Then, there's doctor's appointments and weather systems. I react in crazy ways to weather at this point. Climbing pressure, dropping pressure, too high pressure, too low pressure. My body wants none of it. It used to be just migraines, but now it's multi-systemic. Again, my body craves stability, but rarely gets it in Chicago. So, you see how life is just a series of landmines.
And dealing with these constant landmines makes my life chaotic but basically really boring. I have almost nothing to talk about outside of illness. I feel like I've written versions of this same blog post a million times for over a decade. It's hard to have much of a personality when nearly all your time is spent avoiding and suffering. I'm not independent, and I don't really have choices in life. I'm really hoping to catch up with some loved ones by video chat soon, but finding a "good" time is really difficult, and I'm afraid I have nothing interesting to talk about.
In addition to dealing with my own decline, I have been busy trying to care for my declining elderly dog, Wilma. She is my little sweetheart. But she is suffering from dementia. It is so difficult to watch her suffer. I try to help her to be happy and feel safe, but life is hard for her. She is often scared and confused. She gets lost and stuck in strange places. And late at night, she gets so agitated and cries. I have to rock her to sleep in my lap. But I know I won't have my little girl forever. I love her so freaking much though.
There's another thing that makes talking with people difficult. I don't know many other childless people. Basically, everyone has kids. Now, I'm not jealous of sleepless nights, but I am jealous that people can survive those restless nights and still care for and raise their children. I know. Envy is not a good look. But really, it is heartbreak. My heart is broken that I will never be a mother. Not that I want to pass this disease along or have a child that I am too ill to care for. But a childless future is incredibly bleak. I always knew I was going to be a mom. I used to write diary entries to my future daughter. I knew I would be a good mother because I would remember what it felt like to struggle at different ages. I knew I would try to be just like my mom was to me, a constant supporter and best friend.
So it is really hard to see pictures and videos of friends with their children. I am incredibly happy for them and absolutely amazed at how they rise to the challenges of parenthood. I am so happy that they have made these little humans and they get to raise them. It is so beautiful. It makes me cry more than anything else though. More than watching people climb mountains and run marathons and go on vacations and have adventures and celebrations. Even more than seeing the food that people are able to indulge in while I sit here with my 8 "safe" foods day in and day out. I even struggle to watch TV shows where someone gives birth. It makes my life feel empty like almost nothing else. What is this life? Why is this life? That's a question I know better than to ask. There is no why. It just is. I know that.
Well, I can't believe anyone has enough time in their busy lives for a blog entry this long. But for any of you who do make time, thank you for reading the product of my racing thoughts. I am so grateful for all the support I receive. I know how incredibly fortunate I am. Many people in my situation end up alone in the world, living in total isolation. I do not take a single person or message or word of encouragement for granted.
And my life is really not fun. I try to find little snippets of fun or happiness or even joy and hold onto them, but they are so few and far between. It just feels like an endless uphill climb, or a downward spiral. It seems strange that going downhill and going uphill are both pretty bad things. Like, if an uphill battle ("a task that is very daunting from the outset and continues to be challenging" - https://idioms.thefreedictionary.com/) and a downward spiral ("a situation in which something continuously decreases or gets worse" - https://www.merriam-webster.com/) are both really bad. You really don't want your life going either way. This suggests to me that many of us really desire stability. We desire homeostasis. And an unpredictable illness takes away any sense of ease or comfort in your situation.
Why so loquacious tonight? Well, I'm currently having a reaction that is causing over-stimulation. My brain is racing, and my speech is pressured. I feel so agitated. And that's all on top of the mind-blowing pain and burning. So I decided to write it out tonight while I actually have something to say. (Most of life is in a fog, so at least this brings things into focus for a bit.)
This last month has been hard. And whenever someone asks me how I'm doing, that's how I usually answer. It's the least pessimistic answer I can come up with that is still honest and genuine. But this last month really has been a challenge. Three hospital-based doctor's appointments in under a month. That's way too much outside exposure for my body to absorb and tolerate. But they needed to be done, each one of them.
First, I saw Dr. Barboi's PA. He is my autonomic neurologist that specializes in dysautonomia/POTS. But he is too busy to see follow-up cases anymore, so I saw his PA. She was nice and interested and pretty thorough. It was just an annual appointment so that I remain his patient. And I need to remain his patient because he understands my illness, and there may come a time that I really need his help. So, we were inside the hospital for two hours. I wore my respirator the whole time. This thing is ridiculous-looking, but it really does help me with one thing. It prevents the severe facial pain and headaches that I get whenever I'm in public. It's not perfect, but for that alone, it is worth it. The more I can prevent that pain, the less prone I am to the next trigger for the pain. So I can go longer without having any facial pain, sometimes a week or more at a time. Usually the weather or some unavoidable trigger ruins it, but at least I can avoid it when I go to the doctor. Unfortunately, I still suffer the rest of my symptoms for weeks following the appointment. I can only protect my trigeminal nerve, really.
Anyway, nothing in particular came out of this appointment. Honestly, it was the same as last year. Dr. Barboi wanted me to see Dr. Tobin and wanted me to try the chemo drug called Imatinib. I also got my handicapped placard renewed. That was it. But I have portal access to him for the next year, so that's worth a lot.
A week later, I had my long-awaited appointment with Dr. Tobin. This was quite an ordeal. It was a morning appointment in Oak Park. I don't do mornings. So I only got four hours of sleep the night before. I was a wreck. There was a wait inside a smelly waiting room. Even though I can't smell most things through the respirator, I can still literally taste the disinfectant smell in the air. The taste lasts all day. It's crazy, I know. Believe it or not. But it happens every time. And every hospital has that same disinfectant everywhere, filling the air. Anyway, this time was three hours inside the hospital wearing my respirator. I spent a long time talking through my history and my symptoms with the fellow that I saw. She was also very nice and interested and thorough. I felt that I explained everything pretty well.
Dr. Tobin came in at the end, and she definitely believes I have the right diagnosis. But she was not particularly optimistic about my treatment. Not hopeless, but not hopeful. I appreciate that actually. Don't get my hopes up so high just to be dashed again. Basically, she has a few ideas that haven't been tried yet (although certainly nothing novel to me--I know this stuff like the back of my hand). The conclusion of the appointment was that we were going to repeat some labs (I have gotten most of the results back. Same elevations in blood and urine indicative of a systemic mast cell activation disorder), and that we were going to trial a compounded medication that I haven't tried before. It is in the same class as Singulair (asthma medication), but a different drug. We will get it compounded to avoid fillers and start with a lower dose than usual. It won't necessarily make any big change in my condition. It almost certainly will not. But if for some reason I can tolerate it, we could start "chipping away" at my hyperactive mast cells. Basically, that's her approach, to keep trying things little by little and see if we can chip away at this illness that is wreaking havoc throughout my body.
The only problem that has come up is that so far, no compounding pharmacy has access to this drug. They are not able to compound it. So it may be a dead end. If it is, she had a few other ideas, but none that I'm especially excited about. Maybe a medicine for nerve pain, like Gabapentin. But I haven't had luck with it in the past. Lots of side effects for little to no relief. And it would do nothing to actually stabilize my crazy mast cells. Maybe aspirin (which doesn't seem smart long-term). Maybe regular IV fluids (which is hard on the veins). Maybe even IVIG treatment (but I don't really want to strengthen my immune system. I don't even get infections easily.)
A great thing that came out of this appointment is that Dr. Tobin and Dr. Barboi are now consulting together on my case. They may share ideas with one another. And those are two brains that I definitely want on my side. They both agreed that my burning pain I get, often in my torso, but also in my face, in my mouth, in my eyes, and in my crotch are a form of neuropathy. Not typical small fiber neuropathy or peripheral neuropathy, based on location, but still neuropathy. Atypical, as usual.
Those were the big appointments. And oh man, did I suffer for them. My list of symptoms in the two weeks following the appointment at Rush is a page long. To summarize, I had widespread burning, itching, deep cough, headache over my eyes, palpitations, body pain, nausea, bladder pain, tachycardia, diarrhea followed by constipation, a rash, hair loss, crawling skin, lethargy, brain fog, and gastroparesis. Those were the big ones. All because I spent time in a doctor's office. I was grateful that insomnia did not accompany this reaction, and neither did trigeminal pain. But it was still absolute misery.
And as usual, as soon as I start feeling like I could be getting back to homeostasis a couple weeks later, I had another appointment. The last one was just a check-in with my psychiatrist. It went fine. No changes in meds, like usual. Thankfully, he agreed that we can scale back to 6-month appointments instead of 3-month. Our insurance is not covering any of the visits, so it's a relief for more than one reason that I only have to go twice a year instead of four times a year as I have been. Too bad he's a resident, so they only stick around for a year or two before I have to switch again. I like him. I wish I could see more of him, but like most things in life, that's just not an option.
So, I had a horrible weekend following this appointment. The usual terribleness, with especially bad lethargy and brain fog. I was practically catatonic for a lot of the weekend. Then, Monday came, and I felt a bit like a human again. I actually felt pretty great for me. So, it was really a good time to seize on the chance for a trial visit with my brother. He and I are very close, but we have barely been able to see each other in the years since my mast cells lost their freaking minds. But he has put in enormous effort to be able to visit with me again. He has changed his entire routine. He uses all fragrance free products that I know are safe for me (because they are also used by either me or my mom or my husband or my stepdad--my safe people). He also freaking quit smoking cigarettes for me (and for his health, too, I assume)! I mean, that is dedication.
I wanted so badly for it to go perfectly and for me not to have a reaction to being near him. But of course, my mast cells had other ideas. The fact of the matter is that I have become so incredibly sensitive to so many things, but especially laundry products, that I just can't be around almost anyone. Clothes (and skin and hair) hold onto so much scent. And laundry products these days are, like, military grade. They are incredibly sticky scent molecules, and they basically never wash out. Not enough for someone as sensitive as me. And every exposure seems to lead to a worse reaction. So, I started feeling the pressure in my face and a sore, scratchy throat. I could also taste the very faint laundry smell. To be clear, he uses a fragrance free detergent and no fabric softener on all his clothes. It just isn't enough to wash away the old scent molecules. I ended up with quite a reaction. I went up to my bedroom to escape and deal with the fall-out. The trigeminal pain has been around an 8. I've had excess mucus and a sore throat. I've had burning (neuropathy) in my face, my lips, my eyes, in my mouth, and in my crotch. (Pain level 7-8). It then progressed to agitation, skin crawling, pressured speech, racing thoughts, nausea, global head pressure, and vertigo. I am in an absolutely miserable state. And it's only been 8 hours. Who knows what will come in the following days? Surely, a crash into lethargy and prolonged symptoms. All from some barely there laundry product residue. This stuff is literally poison to my body. I am poisoned.
Worst of all, this stuff is everywhere. It's the main reason that I can't see most people. It makes walking outside hazardous because every house and apartment has this stuff pumping out laundry vents into the air every day. We have a plan to try again. We will buy him a set of clothes to wear and be washed at mom's house only for our visit. This will eliminate the laundry product residue problem, and maybe we'll finally be able to see each other again. Maybe. I don't trust my body at all. But we will keep trying because it matters. Relationships matter. And I'm trying to salvage the ones that aren't totally gone and maintain the ones that matter so much. This illness is so incredibly hard on my loved ones. My husband deals with so, so much. He shares so much of the burden with me. He has to cope with so many of the same losses and limitations. Our life barely even feels like a life sometimes. And he keeps pushing through, keeps making accommodations, and stays by my side. It is hard to know that this illness brings so much pain to anyone that I am close to.
Life feels like a series of landmines to either be avoided or survived. It's one thing after another. Seriously. My pillow picked up a scent from my car, so I washed it, like usual, in fragrance free detergent (Biokleen). Well, after that, it smelled like chlorine. I have washed it and soaked it in vinegar, in baking soda, in vodka so many times. And it is still not totally gone. (You would be surprised how useful cheap vodka can be.) I don't know how it happened. I guess I'm looking for a new detergent again. And a new pillow. New anything is really a landmine.
Then, there were ants. Our apartment got infested, and I was having to vacuum twice a day to keep them away. But I react to the vacuum because it smells like burning rubber. These particular ants seemed to sting me. I mean, the ant attached itself to me, and it felt like a bee sting and continued stinging for at least an hour after the bite. Then a welt would show up the next day. I don't know what kind of crazy ants these are. So, we tried all the natural methods but eventually had to spray with bug repellent. No scent, but still unknown if it contributed to my symptoms. It certainly adds to the chemical load. I wasn't there for the spraying. My hubby does things like that while I'm away at mom's during the week.
Our apartment is generally bad for my health. I am generally sicker there, although I do better when there is fresh air outside, and I can ventilate like crazy. Basically, I do best when the apartment is a wind tunnel. You know you want to live with me. (Don't forget about the extreme food and cooking and product restrictions!)
Then, there's doctor's appointments and weather systems. I react in crazy ways to weather at this point. Climbing pressure, dropping pressure, too high pressure, too low pressure. My body wants none of it. It used to be just migraines, but now it's multi-systemic. Again, my body craves stability, but rarely gets it in Chicago. So, you see how life is just a series of landmines.
And dealing with these constant landmines makes my life chaotic but basically really boring. I have almost nothing to talk about outside of illness. I feel like I've written versions of this same blog post a million times for over a decade. It's hard to have much of a personality when nearly all your time is spent avoiding and suffering. I'm not independent, and I don't really have choices in life. I'm really hoping to catch up with some loved ones by video chat soon, but finding a "good" time is really difficult, and I'm afraid I have nothing interesting to talk about.
In addition to dealing with my own decline, I have been busy trying to care for my declining elderly dog, Wilma. She is my little sweetheart. But she is suffering from dementia. It is so difficult to watch her suffer. I try to help her to be happy and feel safe, but life is hard for her. She is often scared and confused. She gets lost and stuck in strange places. And late at night, she gets so agitated and cries. I have to rock her to sleep in my lap. But I know I won't have my little girl forever. I love her so freaking much though.
There's another thing that makes talking with people difficult. I don't know many other childless people. Basically, everyone has kids. Now, I'm not jealous of sleepless nights, but I am jealous that people can survive those restless nights and still care for and raise their children. I know. Envy is not a good look. But really, it is heartbreak. My heart is broken that I will never be a mother. Not that I want to pass this disease along or have a child that I am too ill to care for. But a childless future is incredibly bleak. I always knew I was going to be a mom. I used to write diary entries to my future daughter. I knew I would be a good mother because I would remember what it felt like to struggle at different ages. I knew I would try to be just like my mom was to me, a constant supporter and best friend.
So it is really hard to see pictures and videos of friends with their children. I am incredibly happy for them and absolutely amazed at how they rise to the challenges of parenthood. I am so happy that they have made these little humans and they get to raise them. It is so beautiful. It makes me cry more than anything else though. More than watching people climb mountains and run marathons and go on vacations and have adventures and celebrations. Even more than seeing the food that people are able to indulge in while I sit here with my 8 "safe" foods day in and day out. I even struggle to watch TV shows where someone gives birth. It makes my life feel empty like almost nothing else. What is this life? Why is this life? That's a question I know better than to ask. There is no why. It just is. I know that.
Well, I can't believe anyone has enough time in their busy lives for a blog entry this long. But for any of you who do make time, thank you for reading the product of my racing thoughts. I am so grateful for all the support I receive. I know how incredibly fortunate I am. Many people in my situation end up alone in the world, living in total isolation. I do not take a single person or message or word of encouragement for granted.
Sunday, February 17, 2019
What Not to Say to Someone Who is Suffering
I wanted to share with all my blog readers a video that I made for my mom's church. The pastor was kind enough to ask for my input on how to handle the suffering of a loved one. It was emotional for me to write this piece, and a bit of a challenge to record. I was having a migraine and in a bit of a fog, but that mental dullness probably helped keep me from breaking down and sobbing near the end.
Please keep in mind, I can't set any universal standards for what you should or shouldn't say to someone you love. It's all so subjective. But having been sick this long, I certainly know what I have heard repeatedly for so many years, and what tends to rub me the wrong way.
Since I know mostly my family and friends will watch this, please know that even if you have said one or more of these things to me, it doesn't mean I took it the wrong way or that I'm mad at you. I know that all of these things are well-intentioned when they are said, and I would never hold it against someone that they didn't say exactly the right thing. Any and all support is truly appreciated.
Please keep in mind, I can't set any universal standards for what you should or shouldn't say to someone you love. It's all so subjective. But having been sick this long, I certainly know what I have heard repeatedly for so many years, and what tends to rub me the wrong way.
Since I know mostly my family and friends will watch this, please know that even if you have said one or more of these things to me, it doesn't mean I took it the wrong way or that I'm mad at you. I know that all of these things are well-intentioned when they are said, and I would never hold it against someone that they didn't say exactly the right thing. Any and all support is truly appreciated.
On the medical front, I have several doctors' appointments coming up which I am truly dreading. (I dread every appointment, because they make me sick for so long.) But please don't get your hopes up! I am going in with an open mind, but not expecting much to change. But I am open to any and all potential improvements, obviously.
As always, thank you for reading (and watching), and thank you for still caring after all these years.
Sunday, November 11, 2018
I'm Still Here...
Well, I haven't written since June. I also basically stopped taking notes on my health, because there are no more triggers to figure out at this time, and I've got a pretty good record of my triggers and reactions if needed for future appointments. I haven't had any major doctor's appointments (just maintenance appointments with my psychiatrist). I also haven't really trialed any new medicines because I'm just trying to live my life. You know what I mean? Just trying to lay low, get by, and avoid making my mast cells angry. I just want to enjoy the calm and survive the storms.
Of course, life has worked against me left and right, as expected at this point. And a million things that seem like they couldn't go wrong or seem like they couldn't cause a problem are constantly happening. I have not been stable, but I've been stably unstable, if that makes sense.
I've still been working my job in transcription since February. I still make a mere pittance, but my typing skills are pretty awesome at this point (when my hands and wrists don't hurt too much). I mostly like the job, although I often feel that I am using up all of my energy for the day to earn about $4 an hour. I work 3-4 days a week for 3-6 hours each day. So anywhere from 10-20 hours a week, basically. It's something I can do and do well (I have perfect metrics, meaning the scores on my graded projects, which really satisfies the tiny part of me left with perfectionistic tendencies.). It's also fantastic to be able to work literally whenever I feel like it. I do all my work in bed, propped up by a bunch of pillows to try to make it ergonomic and not injure anything. But in general, I have increased hand and spine pain from working.
So, one thing that has gotten trickier with working is my sleep schedule. My body really, really hates normal sleeping hours. It's pointless to even try to go to bed before midnight or wake up before 11:00. But with many good jobs being available late at night, I'm often working until midnight, and it takes me another couple of hours to wind down after that. So, I'm often up until 2:00 or 3:00 AM. I get out of bed around noon most of the time. I never sleep through the night. Not in years. I always wish I could improve these hours so I wouldn't be so late-shifted, but whenever I try, I either simply can't sleep or I have terrible sleep quality, and I don't end up getting up any earlier. It's really annoying. I've also been experimenting with reducing the medicines that help me sleep to try to improve daytime wakefulness, but it's been pretty hit or miss. I should probably just stick with what's been working to get me to sleep because if I don't sleep well enough, my daytime wakefulness is not any better.
So, this leads to the brain fog problem. I have many different levels of brain fog. Sometimes, I just have a little trouble following a conversation or a TV show. Sometimes, I have trouble producing words and sentences. Sometimes, I have trouble producing thoughts. And sometimes, I am in a stupor, close to unconsciousness quite frequently. I have trouble responding to my surroundings with speech or movement. I experience all of these levels on a near-daily basis. There is not a day without cognitive impairment. It used to be pretty predictably terrible in the morning and improving in the evening, but that doesn't seem to be strictly true anymore. I can get lost in a fog throughout the day. They are some pretty serious cognitive deficits. My face is often completely expressionless, and it often takes a ton of effort to change that. It feels like I'm wearing a mask.My eyelids feel heavy, and my cheeks feel stiff. My memory is often a huge blur, so it's hard for me to even come up with words to say about what's been going on in my life. I honestly don't remember a lot of it. When people ask me how I'm doing, it is really hard to figure out an answer a lot of the time.
However, I do have a newer symptom which may be a result of my extended social isolation. When I do have a conversation with someone that I haven't talked to in a while, I may be so out of it that I stay in a fog, but I may also get over-stimulated. It's a really frustrating thing, because I crave interaction, but apparently, it is sometimes too much for me to handle, and I become basically hypomanic with pressured speech, and I feel overly-excited. This is followed by a crash later on. I really wish my body could just maintain some kind of homeostasis instead of the highs and lows (mostly lows at this time).
The big life event that has happened since I last wrote was the death of my Granddad. It was very stressful and distressing. I am very grateful that an outdoor meeting was possible and arranged for me to say goodbye to him. I attended his funeral in an unorthodox way, for sure. I sat in the car watching the service over Skype on my phone. It was a little ridiculous, but better than missing out. I also didn't have to feel bad about disturbing the service with my audible sobs. I came into the church, wearing my respirator, at the very end of the service. I just needed to hug my family. It was just so deeply sad, and I needed to be there. So, I was inside the church for a short, but meaningful time. I definitely suffered for it. I developed a full-body tremor when I got back to my car. I waited for another hour or more before leaving. I was incapacitated for the rest of the day, and suffered a reaction for several days afterward. Thankfully, I was able to sleep through this reaction. (I never take sleep for granted!) But it involved a lot of pain, including trigeminal and body pain, lethargy, itching, digestive issues, burning, vertigo, and some fevers.
The season change has been good and bad. As soon as the oppressive heat ended, I noticed that the smells in our apartment (especially seeping cigarette smell) seem to have mostly vanished. I doubt the neighbors have changed, more that the air is cooler, so the smell is less intense. This is for a few reasons: smells are diffused more quickly in hot air, hot air can absorb more scent molecules than cold air, and humidity makes your sense of smell more effective. So all of that works against me in the summer months. I struggled so much when they resurfaced our parking lot. I couldn't be home at all. I became completely manic. But as soon as the air cooled down, I could no longer smell it from our condo window.
So, cool air is easier to deal with that way. Also, mold growth really slows down in the winter, so that's a big plus inside and out. It also helps that we don't have to rely on our wall unit A/C which blows in mostly unfiltered outside air. However, then we have winter problems to deal with. The dry air is killer on my eyes. My dry eye disease was pretty well-managed over the summer, just requiring a few applications of preservative-free eye gel a night. Now that the air is cooler and drier, and we're running the heat, I've already started getting eye abrasions again while I sleep, no matter how much eye gel I use. So, I have to carefully manage our indoor humidity, which can be tricky to avoid mold growth and spread. But I'm managing it. Season change is also very hard for my migraines and facial pain. I feel every barometric pressure change in my face and sometimes in my whole head. Too low, too high, too steep a change=increased pain. But now that I am not often exposed to fragrance for very long, the pain usually doesn't reach the unbearable level.
My girl, Wilma, has been having plenty of problems to keep my mind worrying, and not about myself. She's had more intestinal infections. She lost her appetite completely for a while. I had to hand-feed her meals. She's very, very skinny at this point. But she is eating again. She's on her second round of antibiotic treatment in three months. It helps so much with her appetite and her digestion. I wish she could just stay on it. Probiotics made specifically for dogs and recommended by her previous vet seem to make the problem worse, so we'll stick with what works. She is on a tiny, tiny dose of a very safe antibiotic, and everyone is much happier when she can digest properly.
Unfortunately, she is still dealing with the effects of dementia. We notice it worsening week by week. It also seems to progress every time her GI flares up. She has some really strange behaviors, including getting herself stuck in very strange places (like wedged behind the TV or between a dresser and the wall or under my bed). She also has developed extreme thirst and restlessness late at night and in the overnight hours. This can make it very difficult for me to sleep because my sleep is so delicate. Any little sound or movement, even while wearing my earplugs, will wake me up, and I don't fall back to sleep easily. So, we're managing as best we can and trying to keep her happy, comfortable, and safe. It's just getting harder to do when she puts herself in precarious situations!
I'm sure there's a million other things that I've forgotten, but the only other thing I can think of right now is upcoming appointments. I am seeing my current immunologist this week. I haven't seen her since February, I think, so it is good to maintain that relationship. She also prescribes one of my specially formulated medications. I don't really have a PCP right now, so it makes sense to keep seeing her, even though she has nothing new to offer me for mast cells. I also will be having a dreaded dentist appointment sometime this winter. I haven't been in 3 or 4 years due to scents and not being able to wear my respirator when I am in the office. I don't go inside any doctor's office without my respirator. And I will be in close contact with the hygienist and the dentist, so we are going to try our best to make it an unscented and very efficient appointment. But I will still be absolutely terrified of how severely I'll react. My last appointment led to a month-long migraine, so I am truly fearful for how much pain I will invoke.
In February, I will have two important appointments. I will have my yearly appointment with Dr. Barboi, my autonomic neurologist. I'm pretty sure he won't have anything new for me to try, but I need to remain his patient too. He's a man you want in your corner, for sure, and he understands my situation better than most, even if he can't do a lot to help my current state. Finally, the big news is that I got an appointment scheduled with a mast cell specialist in Chicago. I should really say that my mom got me the appointment, because my past trauma prevented me from being able to make that call myself, and I don't believe it would have happened without her help. I think it is so important that I see this doctor, but I have only a modicum of hope that there is anything else that can be done for me. Nonetheless, it is something I absolutely have to try, no matter what the chances are of improvement.
I think that's everything. I hope everyone reading this is having a nice November. Thank you for those that read and that care, after all this time. I am endlessly thankful for the support I have in my life. I know where I'd be without it, and it's not here.
Here's what I mean when I say I wear a respirator to go out. I mean an actual respirator. Those dinky little cloth carbon masks do nothing for me anymore. This gives me a few minutes before symptoms start, due to skin absorption. But wearing it avoids the worst of the trigeminal pain I get from every scent imaginable. I still end up with miserable symptoms for days after an exposure, but the suicide pain in my face is so much less, as long as I don't stay anywhere too long. It's better than nothing! But it doesn't give me my freedom.
Of course, life has worked against me left and right, as expected at this point. And a million things that seem like they couldn't go wrong or seem like they couldn't cause a problem are constantly happening. I have not been stable, but I've been stably unstable, if that makes sense.
I've still been working my job in transcription since February. I still make a mere pittance, but my typing skills are pretty awesome at this point (when my hands and wrists don't hurt too much). I mostly like the job, although I often feel that I am using up all of my energy for the day to earn about $4 an hour. I work 3-4 days a week for 3-6 hours each day. So anywhere from 10-20 hours a week, basically. It's something I can do and do well (I have perfect metrics, meaning the scores on my graded projects, which really satisfies the tiny part of me left with perfectionistic tendencies.). It's also fantastic to be able to work literally whenever I feel like it. I do all my work in bed, propped up by a bunch of pillows to try to make it ergonomic and not injure anything. But in general, I have increased hand and spine pain from working.
So, one thing that has gotten trickier with working is my sleep schedule. My body really, really hates normal sleeping hours. It's pointless to even try to go to bed before midnight or wake up before 11:00. But with many good jobs being available late at night, I'm often working until midnight, and it takes me another couple of hours to wind down after that. So, I'm often up until 2:00 or 3:00 AM. I get out of bed around noon most of the time. I never sleep through the night. Not in years. I always wish I could improve these hours so I wouldn't be so late-shifted, but whenever I try, I either simply can't sleep or I have terrible sleep quality, and I don't end up getting up any earlier. It's really annoying. I've also been experimenting with reducing the medicines that help me sleep to try to improve daytime wakefulness, but it's been pretty hit or miss. I should probably just stick with what's been working to get me to sleep because if I don't sleep well enough, my daytime wakefulness is not any better.
So, this leads to the brain fog problem. I have many different levels of brain fog. Sometimes, I just have a little trouble following a conversation or a TV show. Sometimes, I have trouble producing words and sentences. Sometimes, I have trouble producing thoughts. And sometimes, I am in a stupor, close to unconsciousness quite frequently. I have trouble responding to my surroundings with speech or movement. I experience all of these levels on a near-daily basis. There is not a day without cognitive impairment. It used to be pretty predictably terrible in the morning and improving in the evening, but that doesn't seem to be strictly true anymore. I can get lost in a fog throughout the day. They are some pretty serious cognitive deficits. My face is often completely expressionless, and it often takes a ton of effort to change that. It feels like I'm wearing a mask.My eyelids feel heavy, and my cheeks feel stiff. My memory is often a huge blur, so it's hard for me to even come up with words to say about what's been going on in my life. I honestly don't remember a lot of it. When people ask me how I'm doing, it is really hard to figure out an answer a lot of the time.
However, I do have a newer symptom which may be a result of my extended social isolation. When I do have a conversation with someone that I haven't talked to in a while, I may be so out of it that I stay in a fog, but I may also get over-stimulated. It's a really frustrating thing, because I crave interaction, but apparently, it is sometimes too much for me to handle, and I become basically hypomanic with pressured speech, and I feel overly-excited. This is followed by a crash later on. I really wish my body could just maintain some kind of homeostasis instead of the highs and lows (mostly lows at this time).
The big life event that has happened since I last wrote was the death of my Granddad. It was very stressful and distressing. I am very grateful that an outdoor meeting was possible and arranged for me to say goodbye to him. I attended his funeral in an unorthodox way, for sure. I sat in the car watching the service over Skype on my phone. It was a little ridiculous, but better than missing out. I also didn't have to feel bad about disturbing the service with my audible sobs. I came into the church, wearing my respirator, at the very end of the service. I just needed to hug my family. It was just so deeply sad, and I needed to be there. So, I was inside the church for a short, but meaningful time. I definitely suffered for it. I developed a full-body tremor when I got back to my car. I waited for another hour or more before leaving. I was incapacitated for the rest of the day, and suffered a reaction for several days afterward. Thankfully, I was able to sleep through this reaction. (I never take sleep for granted!) But it involved a lot of pain, including trigeminal and body pain, lethargy, itching, digestive issues, burning, vertigo, and some fevers.
The season change has been good and bad. As soon as the oppressive heat ended, I noticed that the smells in our apartment (especially seeping cigarette smell) seem to have mostly vanished. I doubt the neighbors have changed, more that the air is cooler, so the smell is less intense. This is for a few reasons: smells are diffused more quickly in hot air, hot air can absorb more scent molecules than cold air, and humidity makes your sense of smell more effective. So all of that works against me in the summer months. I struggled so much when they resurfaced our parking lot. I couldn't be home at all. I became completely manic. But as soon as the air cooled down, I could no longer smell it from our condo window.
So, cool air is easier to deal with that way. Also, mold growth really slows down in the winter, so that's a big plus inside and out. It also helps that we don't have to rely on our wall unit A/C which blows in mostly unfiltered outside air. However, then we have winter problems to deal with. The dry air is killer on my eyes. My dry eye disease was pretty well-managed over the summer, just requiring a few applications of preservative-free eye gel a night. Now that the air is cooler and drier, and we're running the heat, I've already started getting eye abrasions again while I sleep, no matter how much eye gel I use. So, I have to carefully manage our indoor humidity, which can be tricky to avoid mold growth and spread. But I'm managing it. Season change is also very hard for my migraines and facial pain. I feel every barometric pressure change in my face and sometimes in my whole head. Too low, too high, too steep a change=increased pain. But now that I am not often exposed to fragrance for very long, the pain usually doesn't reach the unbearable level.
My girl, Wilma, has been having plenty of problems to keep my mind worrying, and not about myself. She's had more intestinal infections. She lost her appetite completely for a while. I had to hand-feed her meals. She's very, very skinny at this point. But she is eating again. She's on her second round of antibiotic treatment in three months. It helps so much with her appetite and her digestion. I wish she could just stay on it. Probiotics made specifically for dogs and recommended by her previous vet seem to make the problem worse, so we'll stick with what works. She is on a tiny, tiny dose of a very safe antibiotic, and everyone is much happier when she can digest properly.
Unfortunately, she is still dealing with the effects of dementia. We notice it worsening week by week. It also seems to progress every time her GI flares up. She has some really strange behaviors, including getting herself stuck in very strange places (like wedged behind the TV or between a dresser and the wall or under my bed). She also has developed extreme thirst and restlessness late at night and in the overnight hours. This can make it very difficult for me to sleep because my sleep is so delicate. Any little sound or movement, even while wearing my earplugs, will wake me up, and I don't fall back to sleep easily. So, we're managing as best we can and trying to keep her happy, comfortable, and safe. It's just getting harder to do when she puts herself in precarious situations!
I'm sure there's a million other things that I've forgotten, but the only other thing I can think of right now is upcoming appointments. I am seeing my current immunologist this week. I haven't seen her since February, I think, so it is good to maintain that relationship. She also prescribes one of my specially formulated medications. I don't really have a PCP right now, so it makes sense to keep seeing her, even though she has nothing new to offer me for mast cells. I also will be having a dreaded dentist appointment sometime this winter. I haven't been in 3 or 4 years due to scents and not being able to wear my respirator when I am in the office. I don't go inside any doctor's office without my respirator. And I will be in close contact with the hygienist and the dentist, so we are going to try our best to make it an unscented and very efficient appointment. But I will still be absolutely terrified of how severely I'll react. My last appointment led to a month-long migraine, so I am truly fearful for how much pain I will invoke.
In February, I will have two important appointments. I will have my yearly appointment with Dr. Barboi, my autonomic neurologist. I'm pretty sure he won't have anything new for me to try, but I need to remain his patient too. He's a man you want in your corner, for sure, and he understands my situation better than most, even if he can't do a lot to help my current state. Finally, the big news is that I got an appointment scheduled with a mast cell specialist in Chicago. I should really say that my mom got me the appointment, because my past trauma prevented me from being able to make that call myself, and I don't believe it would have happened without her help. I think it is so important that I see this doctor, but I have only a modicum of hope that there is anything else that can be done for me. Nonetheless, it is something I absolutely have to try, no matter what the chances are of improvement.
I think that's everything. I hope everyone reading this is having a nice November. Thank you for those that read and that care, after all this time. I am endlessly thankful for the support I have in my life. I know where I'd be without it, and it's not here.
Here's what I mean when I say I wear a respirator to go out. I mean an actual respirator. Those dinky little cloth carbon masks do nothing for me anymore. This gives me a few minutes before symptoms start, due to skin absorption. But wearing it avoids the worst of the trigeminal pain I get from every scent imaginable. I still end up with miserable symptoms for days after an exposure, but the suicide pain in my face is so much less, as long as I don't stay anywhere too long. It's better than nothing! But it doesn't give me my freedom.
Friday, June 1, 2018
Two years of isolation...so far
Well, a lot hasn't changed, which is mainly why I haven't written. But, I also started working a new job in February. I got hired as a freelance transcriptionist. The pay is very, very little. But I also work only as much as I am able when I am able, and I can do it in bed. I only take jobs when I feel able to do so, and if it seems too hard, I can bail within the first hour. It's a good setup. Amazingly, even when I am in too much of a fog to put together a coherent sentence, I'm able to do this job. It's something I can do on auto-pilot. I feel like I accomplish something, although working around my hand and wrist pain, trying to prevent repetitive strain injury is quite a challenge.
I've given up on my daily diary. But I have been tracking any major triggers.
The barometer changes and highs and lows still cause me a lot of trouble. Migraines are just the beginning. When the barometer is dropping the day before rain or storms, I am basically braindead all day. Severe brain fog and lethargy. Extremely slow thinking. And sometimes a horrific migraine.
I saw my autonomic neurologist on February 13. I wore my respirator, of course. But I still had a severe, three-day reaction that included headache and facial pain, nausea, burning, lack of appetite, diarrhea, vertigo, extreme emotionality, agitation, poor sleep, bladder pain, heartburn, stupor, palpitations, severe brain fog (unable to follow a TV show), and a massive migraine. And nothing too much came from the appointment. He believes I have Mastocytosis and not MCAS. But he doesn't think it's safe for me to have a bone marrow biopsy (and neither do I). I also really doubt it, due to my low tryptase levels. He thinks I should try Imatinib, which is a type of chemo. But no one would prescribe it for me without high tryptase levels or life-threatening symptoms. He thinks it might be a miracle for me, but I'm not sure I even want to try it unless I am having life-threatening symptoms.
March 5, I finally felt brave enough to trial something. I tried the mast cell stabilizing eye drops (Opticrom), and ended up with a corneal abrasion. I apparently react to the preservative called Benzalkonium Chloride. Stinks, because it's in all allergy eye drops and most nasal sprays. My eyes are a complete disaster without allergy eye drops. Blepharitis, blepharospasms, itching, burning. They cause me a lot of distress, in general. I do have a better preservative-free lubricating gel now, so that helps to prevent corneal abrasions. (Although the end of winter has helped, too, I'm sure.)
March 19-24, I put myself into accidental benzodiazepine withdrawal. I literally just forgot to put the pills in my pillcase. It was really dumb, needless suffering, and also a stark reminder of just how sick I will get if I can ever not access the one safe manufacturer I have for this medicine. It is the main reason I sleep most nights now. And sudden withdrawal is something I probably wouldn't come back from.
March 29, I guess I got brave again. I ate a third of a chicken breast with my dinner. I have nine safe foods. I was hoping that chicken would be safe. Unfortunately, it really sucked! I felt incredibly full (like just ate at an all-you-can-eat buffet kind of full) and had shortness of breath. I was up with a pounding heart all night. The next day, I had severe diarrhea. I guess I won't be trying that again. I'm stuck with my nine safe foods: Joe's O's, almond milk, rice cakes, peanut butter, quinoa, carrots, broccoli, potato chips, and butter. I am very grateful that I have enough safe foods to get by, but man, do I miss a lot of foods and variety!
Some time in early April, I was having an incredibly good few days. Unfortunately, those were the days I was scheduled to do the 24-hour urine collection to firm up my diagnosis of MCAS, which would allow me to see a more specialized doctor for treatment. And that test already has a very low rate of actually catching the elevated mediators in urine. It has really difficult handling instructions. And I know I did not manage to get each sample of urine chilled quickly enough. Plus, it is best done during a major reaction or flare. So it was no surprise that we did not find anything helpful from that test. It is majorly frustrating, though. Especially because I became highly reactive again the next day. I don't know how those days even happened. But they are long gone. I've been a mess since then.
April 23, I went to a doctor's office (annual with my gynecologist-wore my respirator, but the office was very scented). I experienced a big adrenaline rush followed by a crash. Severe exhaustion, lethargy, burning torso, major bloating, gastroparesis, presyncope, bladder pain, burning vulva, severe burning throughout torso (pain level 8), roof of mouth burning, chills, facial pain (level 6), and insomnia. The next day, I felt worse as the day progressed. I had diarrhea, burning with all food, flu-like body pain and chills, nausea, feeling hot and cold, burning in arms, ribcage, chest, and vulva.
May 15, I trialed Zyrtec tablets. Taking the tablet form could save me hundreds of dollars a year over the Liquid Gel form, but I wasn't sure if I tolerated it. The only way to know is to be a lab rat. So yet again, I waited until I had a relatively good day followed by a relatively good night. Then I sabotaged it with the trial. I didn't feel too terrible the day of, but that night, I only got four hours of sleep followed by many hours of heart pounding, hot and cold, and diarrhea. Another fail. And another drug that I can only tolerate one form of. Such a difficult place to be in. But at least this one is available OTC. For the three prescription medications that I require a particular brand, I am completely dependent upon the pharmacies for my access to the medicine and my resultant well-being. And they can change that access on a whim. I have no control, and I could lose any relative stability that I currently have if they choose to switch manufacturers.
May 20, my laptop practically died doing a Windows update. I took it to a local repair guy. Unsurprisingly, but still disappointingly, it came to me back scented on the 22nd. Some scent had absorbed into the wrist rests. I wiped it with alcohol swabs every hour and kept a fan on it for two days straight. Unfortunately, I still reacted majorly to it, even though I didn't get very close to it. I had massive facial pain and a feeling of sheer panic for 2.5 days straight. It was terrible. I was an absolute wreck. In addition, my laptop was not fixed. We had to bring it back to him. We told him in no uncertain terms that he would need to have no fragrance on his hands or wrists when he worked on my laptop. He assured us that he would wipe it down afterwards. Geez. People seriously have no clue. Like I didn't try that myself? I got the computer back a couple days later. I haven't been near it since. Mom and Andy worked hard to air it out outside in the sun and wipe it down well. I have no idea how it's working or how it smells. I am basically terrified of it right now. My hubby has been nice enough to let me use his laptop for my work. My computer has been completely wiped. I lost everything on it in the update. I lost several years worth of photos, because I'm apparently terrible at backing up data. But it is only three years old, so I really hope it still works. And even more so, I hope that I don't get sick the next time I use it.
In the meantime, on May 29, I decided to finally trial the Gastrocrom. I've been putting it off for a few reasons, but mostly because it is really the end of the line for my treatment. I have tried and failed everything else. I have even tried this medicine before, but that was back when I was on many medications that I reacted to, and I couldn't sort out my reactions yet. I've also progressed a lot since then. So, on the 29th, I mostly had that familiar burning in my torso. It wasn't too severe. I was a bit agitated at bedtime, but I managed to sleep okay.
On the 30th, I tried Gastrocrom again. (It's really a tiny dose I'm trialing. It's 1/4 of a vial. It is standard to take 8 vials a day, although some take up to 16. So if my foggy brain can do math, it's 1/32 of a standard daily dose. I have a long way to go on this titration, if I make it.) I again had evening burning and agitation. I slept, but not well.
On May 31st (today), I took the same dose for a third time. Today has been horrible. I've had diarrhea, hypotension, and many hours of stupor. It was a day for staring with mouth agape. Not able to formulate a thought. It was bad for about six hours. I also had horrible chest pain that was not a normal symptom for me.
So tonight, I got my ability to think back, although I had to cancel plans to move back to my apartment tonight, due to my inability to think or move. And it is hard not to worry. I just really need to tolerate this medicine. My current doctor has nothing else for me to try. And I don't have any other mast cell doctor to see at this time. There are doctors on my list, but they all have obstacles. The one at Rush won't see me without more laboratory evidence. The integrative one doesn't take insurance and seriously overcharges. One at Northwestern has mixed reviews. And others are out-of-state. But I don't know what the point would be when I don't qualify for any of the stronger treatments. (No chronic hives, no high IgE levels, no life-threatening symptoms that would make me eligible for chemo treatment, no high tryptase levels.) So I feel completely on my own. I haven't even been back to my immunologist since my urine testing, and I'm not scheduled to go back. I may as well keep trialing the Gastrocrom, because I know that she doesn't have anything else to offer me.
It is hard not to feel hopeless. And it is hard that everything depends on me tolerating this drug. 'Cause I'm not doing real great so far. The only thing is, it is not uncommon for people to originally get worse on this medication, and then feel better. And then feel worse again with every dose increase. That sounds horrible, because I have 32 dose increases to survive. And I will not increase the dose until I feel sure that I'm not reacting to the current dose. So this could go on for an extremely long time. But for some people, this medicine works so well that it allows them to tolerate other medicines...and foods, and environments. Unfortunately, if this is like my other medicine reactions, it will be a cumulative reaction that will worsen with each dose. I don't know how long I can stand it. So far, it does seem cumulative. But obviously, three days is early. But it is really hard to put my body through so much.
The thing is, when I'm successfully avoiding triggers (which is incredibly difficult), and when the barometer stays level and normal, I can stand to live in my skin. I sleep well through the night (with one expected wake-up). I don't have constant headaches and migraines. Both of these things feel miraculous. But they are totally dependent on my avoidance of all triggers. I can even work a job (although please don't ask how meager my income is). I can feel happy at times. I can spend pleasant time with my husband or my folks. So it is so hard to give up that tenuous well-being for a medication trial that isn't going well so far, and could even further escalate my condition.
It is just so frustrating!!! I want to give up so badly at times. Part of me feels very strongly that everyone in my life would be better off if I didn't exist. And at other times, I think I could be content with my little bubble life, and I wonder why I would risk it. I know I have to keep trying this medicine, because it truly is my last hope for the foreseeable future. And it is not fair to those that love me if I don't give it a good try. So I have to suffer. I honestly just want to be done. But I know I can't. I have to keep going through hell and find a way to retest my urine and try to get to a new doctor, if that is required. I just have to fight past the hopelessness and despair and keep trying.
It has been almost exactly two years since my hospital stay that escalated me to my current state. During that hospital stay, I developed the severe burning symptom. And my chemical sensitivities reached a level where I could no longer be in any scented environment or near even mildly scented people. I gave up teaching piano. I have been restricted to nine foods, two potential safe spaces, and three safe people. I have suffered every time I have tried to be near other people or left my safe spaces. Two years of such isolation. I have depressive tendencies to start. Then, my illness isolates me from so many people that I love. It is just so hard. Two years is a long freaking time. And I know it's just the beginning.
June is also looking to be a tricky month. All three of my safe people will be going on trips. Of course, I will be staying home, mostly alone. That is already messing with my head, that I am so incredibly trapped, and I may well never travel again. There will also be so many exposures to avoid. Resealing the street and driveway outside my mom's house will have me trapped in my apartment. I just have to hope that the potential cigarette smoke inside and grilling/bonfire smoke outside don't make it too unsafe for me. It does put me at higher risk for anaphylaxis. And if I go back to my high school level of anaphylaxis to smoke, there may be no turning back. Avoidance is the best way to prevent that. But it could get nearly impossible to avoid at times this month. I'll have to hole up in the bedroom at my apartment at least a few times, since it is the most sealed-off room. Unfortunately, there's no a/c in there, so passing out from heat is a real risk if I stay closed in there too long. Hopefully, it won't be too hot of a month.
Thanks for reading and listening. It is hard not to feel lonely in my bubble, especially when everyone goes to sleep long before I do. I still have my Wilma with me, although she sleeps a LOT. My poor little girl has had some problems. We haven't seen the vet about it (vet's offices are a scent nightmare), but she has something like doggie dementia. She loses her balance a lot. She doesn't know where sound is coming from. She has fallen down the whole stairway at Mom's twice! She's fallen off the bed more times than that. She doesn't know how doors work most of the time. She has run right into our sliding door. She's also run into a brick building after going potty. Sometimes, she sleeps so deeply that I can't wake her up. She shivers when she is confused, because it scares her. I think she shivers when she's in pain, too, but it's hard to tell, because she never cries. If she did, I'm pretty sure my heart would break. When she's been asleep for a while, it is hard for her to wake up, and her back legs don't work. She has had several days where she has stroke symptoms for a day. But the next day, she is all better. Except for the noted deficits. She still has a lot of really happy times where she acts like a puppy. Her motto seems to be, "Shake it off." She and I are very closely bonded. And I'm not allergic to her, which is huge! She still lets me sleep until noon, and she is really low-maintenance. I cook food for her to supplement her prescription food diet. But it keeps her GI totally under control. Otherwise, she is such an easy dog to care for, although she has never been well-trained to go potty outside. We do our best! I can't actually care for her alone. I need Gustavo to take her outside in the early morning. Otherwise, I can manage all the rest.
Okay. As always, I still have more to say, but I need to get ready for bed. My body wants to stay up until 3:00, but I try to force it to bed a couple hours earlier. Thanks for still caring, even though I can't see or even really meet most people. I am incredibly grateful to my three safe people, for helping to make my life livable... and possible. I really wouldn't be here without them. They put up with so much and accommodate my illness in countless ways. It is a huge burden that they help me carry. I'm also grateful to others that reach out, even though I am not always in a state to respond. It helps my life feel a little less empty. Love to you all.
I've given up on my daily diary. But I have been tracking any major triggers.
The barometer changes and highs and lows still cause me a lot of trouble. Migraines are just the beginning. When the barometer is dropping the day before rain or storms, I am basically braindead all day. Severe brain fog and lethargy. Extremely slow thinking. And sometimes a horrific migraine.
I saw my autonomic neurologist on February 13. I wore my respirator, of course. But I still had a severe, three-day reaction that included headache and facial pain, nausea, burning, lack of appetite, diarrhea, vertigo, extreme emotionality, agitation, poor sleep, bladder pain, heartburn, stupor, palpitations, severe brain fog (unable to follow a TV show), and a massive migraine. And nothing too much came from the appointment. He believes I have Mastocytosis and not MCAS. But he doesn't think it's safe for me to have a bone marrow biopsy (and neither do I). I also really doubt it, due to my low tryptase levels. He thinks I should try Imatinib, which is a type of chemo. But no one would prescribe it for me without high tryptase levels or life-threatening symptoms. He thinks it might be a miracle for me, but I'm not sure I even want to try it unless I am having life-threatening symptoms.
March 5, I finally felt brave enough to trial something. I tried the mast cell stabilizing eye drops (Opticrom), and ended up with a corneal abrasion. I apparently react to the preservative called Benzalkonium Chloride. Stinks, because it's in all allergy eye drops and most nasal sprays. My eyes are a complete disaster without allergy eye drops. Blepharitis, blepharospasms, itching, burning. They cause me a lot of distress, in general. I do have a better preservative-free lubricating gel now, so that helps to prevent corneal abrasions. (Although the end of winter has helped, too, I'm sure.)
March 19-24, I put myself into accidental benzodiazepine withdrawal. I literally just forgot to put the pills in my pillcase. It was really dumb, needless suffering, and also a stark reminder of just how sick I will get if I can ever not access the one safe manufacturer I have for this medicine. It is the main reason I sleep most nights now. And sudden withdrawal is something I probably wouldn't come back from.
March 29, I guess I got brave again. I ate a third of a chicken breast with my dinner. I have nine safe foods. I was hoping that chicken would be safe. Unfortunately, it really sucked! I felt incredibly full (like just ate at an all-you-can-eat buffet kind of full) and had shortness of breath. I was up with a pounding heart all night. The next day, I had severe diarrhea. I guess I won't be trying that again. I'm stuck with my nine safe foods: Joe's O's, almond milk, rice cakes, peanut butter, quinoa, carrots, broccoli, potato chips, and butter. I am very grateful that I have enough safe foods to get by, but man, do I miss a lot of foods and variety!
Some time in early April, I was having an incredibly good few days. Unfortunately, those were the days I was scheduled to do the 24-hour urine collection to firm up my diagnosis of MCAS, which would allow me to see a more specialized doctor for treatment. And that test already has a very low rate of actually catching the elevated mediators in urine. It has really difficult handling instructions. And I know I did not manage to get each sample of urine chilled quickly enough. Plus, it is best done during a major reaction or flare. So it was no surprise that we did not find anything helpful from that test. It is majorly frustrating, though. Especially because I became highly reactive again the next day. I don't know how those days even happened. But they are long gone. I've been a mess since then.
April 23, I went to a doctor's office (annual with my gynecologist-wore my respirator, but the office was very scented). I experienced a big adrenaline rush followed by a crash. Severe exhaustion, lethargy, burning torso, major bloating, gastroparesis, presyncope, bladder pain, burning vulva, severe burning throughout torso (pain level 8), roof of mouth burning, chills, facial pain (level 6), and insomnia. The next day, I felt worse as the day progressed. I had diarrhea, burning with all food, flu-like body pain and chills, nausea, feeling hot and cold, burning in arms, ribcage, chest, and vulva.
May 15, I trialed Zyrtec tablets. Taking the tablet form could save me hundreds of dollars a year over the Liquid Gel form, but I wasn't sure if I tolerated it. The only way to know is to be a lab rat. So yet again, I waited until I had a relatively good day followed by a relatively good night. Then I sabotaged it with the trial. I didn't feel too terrible the day of, but that night, I only got four hours of sleep followed by many hours of heart pounding, hot and cold, and diarrhea. Another fail. And another drug that I can only tolerate one form of. Such a difficult place to be in. But at least this one is available OTC. For the three prescription medications that I require a particular brand, I am completely dependent upon the pharmacies for my access to the medicine and my resultant well-being. And they can change that access on a whim. I have no control, and I could lose any relative stability that I currently have if they choose to switch manufacturers.
May 20, my laptop practically died doing a Windows update. I took it to a local repair guy. Unsurprisingly, but still disappointingly, it came to me back scented on the 22nd. Some scent had absorbed into the wrist rests. I wiped it with alcohol swabs every hour and kept a fan on it for two days straight. Unfortunately, I still reacted majorly to it, even though I didn't get very close to it. I had massive facial pain and a feeling of sheer panic for 2.5 days straight. It was terrible. I was an absolute wreck. In addition, my laptop was not fixed. We had to bring it back to him. We told him in no uncertain terms that he would need to have no fragrance on his hands or wrists when he worked on my laptop. He assured us that he would wipe it down afterwards. Geez. People seriously have no clue. Like I didn't try that myself? I got the computer back a couple days later. I haven't been near it since. Mom and Andy worked hard to air it out outside in the sun and wipe it down well. I have no idea how it's working or how it smells. I am basically terrified of it right now. My hubby has been nice enough to let me use his laptop for my work. My computer has been completely wiped. I lost everything on it in the update. I lost several years worth of photos, because I'm apparently terrible at backing up data. But it is only three years old, so I really hope it still works. And even more so, I hope that I don't get sick the next time I use it.
In the meantime, on May 29, I decided to finally trial the Gastrocrom. I've been putting it off for a few reasons, but mostly because it is really the end of the line for my treatment. I have tried and failed everything else. I have even tried this medicine before, but that was back when I was on many medications that I reacted to, and I couldn't sort out my reactions yet. I've also progressed a lot since then. So, on the 29th, I mostly had that familiar burning in my torso. It wasn't too severe. I was a bit agitated at bedtime, but I managed to sleep okay.
On the 30th, I tried Gastrocrom again. (It's really a tiny dose I'm trialing. It's 1/4 of a vial. It is standard to take 8 vials a day, although some take up to 16. So if my foggy brain can do math, it's 1/32 of a standard daily dose. I have a long way to go on this titration, if I make it.) I again had evening burning and agitation. I slept, but not well.
On May 31st (today), I took the same dose for a third time. Today has been horrible. I've had diarrhea, hypotension, and many hours of stupor. It was a day for staring with mouth agape. Not able to formulate a thought. It was bad for about six hours. I also had horrible chest pain that was not a normal symptom for me.
So tonight, I got my ability to think back, although I had to cancel plans to move back to my apartment tonight, due to my inability to think or move. And it is hard not to worry. I just really need to tolerate this medicine. My current doctor has nothing else for me to try. And I don't have any other mast cell doctor to see at this time. There are doctors on my list, but they all have obstacles. The one at Rush won't see me without more laboratory evidence. The integrative one doesn't take insurance and seriously overcharges. One at Northwestern has mixed reviews. And others are out-of-state. But I don't know what the point would be when I don't qualify for any of the stronger treatments. (No chronic hives, no high IgE levels, no life-threatening symptoms that would make me eligible for chemo treatment, no high tryptase levels.) So I feel completely on my own. I haven't even been back to my immunologist since my urine testing, and I'm not scheduled to go back. I may as well keep trialing the Gastrocrom, because I know that she doesn't have anything else to offer me.
It is hard not to feel hopeless. And it is hard that everything depends on me tolerating this drug. 'Cause I'm not doing real great so far. The only thing is, it is not uncommon for people to originally get worse on this medication, and then feel better. And then feel worse again with every dose increase. That sounds horrible, because I have 32 dose increases to survive. And I will not increase the dose until I feel sure that I'm not reacting to the current dose. So this could go on for an extremely long time. But for some people, this medicine works so well that it allows them to tolerate other medicines...and foods, and environments. Unfortunately, if this is like my other medicine reactions, it will be a cumulative reaction that will worsen with each dose. I don't know how long I can stand it. So far, it does seem cumulative. But obviously, three days is early. But it is really hard to put my body through so much.
The thing is, when I'm successfully avoiding triggers (which is incredibly difficult), and when the barometer stays level and normal, I can stand to live in my skin. I sleep well through the night (with one expected wake-up). I don't have constant headaches and migraines. Both of these things feel miraculous. But they are totally dependent on my avoidance of all triggers. I can even work a job (although please don't ask how meager my income is). I can feel happy at times. I can spend pleasant time with my husband or my folks. So it is so hard to give up that tenuous well-being for a medication trial that isn't going well so far, and could even further escalate my condition.
It is just so frustrating!!! I want to give up so badly at times. Part of me feels very strongly that everyone in my life would be better off if I didn't exist. And at other times, I think I could be content with my little bubble life, and I wonder why I would risk it. I know I have to keep trying this medicine, because it truly is my last hope for the foreseeable future. And it is not fair to those that love me if I don't give it a good try. So I have to suffer. I honestly just want to be done. But I know I can't. I have to keep going through hell and find a way to retest my urine and try to get to a new doctor, if that is required. I just have to fight past the hopelessness and despair and keep trying.
It has been almost exactly two years since my hospital stay that escalated me to my current state. During that hospital stay, I developed the severe burning symptom. And my chemical sensitivities reached a level where I could no longer be in any scented environment or near even mildly scented people. I gave up teaching piano. I have been restricted to nine foods, two potential safe spaces, and three safe people. I have suffered every time I have tried to be near other people or left my safe spaces. Two years of such isolation. I have depressive tendencies to start. Then, my illness isolates me from so many people that I love. It is just so hard. Two years is a long freaking time. And I know it's just the beginning.
June is also looking to be a tricky month. All three of my safe people will be going on trips. Of course, I will be staying home, mostly alone. That is already messing with my head, that I am so incredibly trapped, and I may well never travel again. There will also be so many exposures to avoid. Resealing the street and driveway outside my mom's house will have me trapped in my apartment. I just have to hope that the potential cigarette smoke inside and grilling/bonfire smoke outside don't make it too unsafe for me. It does put me at higher risk for anaphylaxis. And if I go back to my high school level of anaphylaxis to smoke, there may be no turning back. Avoidance is the best way to prevent that. But it could get nearly impossible to avoid at times this month. I'll have to hole up in the bedroom at my apartment at least a few times, since it is the most sealed-off room. Unfortunately, there's no a/c in there, so passing out from heat is a real risk if I stay closed in there too long. Hopefully, it won't be too hot of a month.
Thanks for reading and listening. It is hard not to feel lonely in my bubble, especially when everyone goes to sleep long before I do. I still have my Wilma with me, although she sleeps a LOT. My poor little girl has had some problems. We haven't seen the vet about it (vet's offices are a scent nightmare), but she has something like doggie dementia. She loses her balance a lot. She doesn't know where sound is coming from. She has fallen down the whole stairway at Mom's twice! She's fallen off the bed more times than that. She doesn't know how doors work most of the time. She has run right into our sliding door. She's also run into a brick building after going potty. Sometimes, she sleeps so deeply that I can't wake her up. She shivers when she is confused, because it scares her. I think she shivers when she's in pain, too, but it's hard to tell, because she never cries. If she did, I'm pretty sure my heart would break. When she's been asleep for a while, it is hard for her to wake up, and her back legs don't work. She has had several days where she has stroke symptoms for a day. But the next day, she is all better. Except for the noted deficits. She still has a lot of really happy times where she acts like a puppy. Her motto seems to be, "Shake it off." She and I are very closely bonded. And I'm not allergic to her, which is huge! She still lets me sleep until noon, and she is really low-maintenance. I cook food for her to supplement her prescription food diet. But it keeps her GI totally under control. Otherwise, she is such an easy dog to care for, although she has never been well-trained to go potty outside. We do our best! I can't actually care for her alone. I need Gustavo to take her outside in the early morning. Otherwise, I can manage all the rest.
Okay. As always, I still have more to say, but I need to get ready for bed. My body wants to stay up until 3:00, but I try to force it to bed a couple hours earlier. Thanks for still caring, even though I can't see or even really meet most people. I am incredibly grateful to my three safe people, for helping to make my life livable... and possible. I really wouldn't be here without them. They put up with so much and accommodate my illness in countless ways. It is a huge burden that they help me carry. I'm also grateful to others that reach out, even though I am not always in a state to respond. It helps my life feel a little less empty. Love to you all.
Tuesday, February 6, 2018
February 2018
Well, I meant to post after the new year. I even wrote a paragraph for a new year's blog post, but the downward spiral continues, and time is mostly spent in a major reaction or a flare from too many reactions. Hopefully, I'll get through this post tonight, when I'm having a tiny lull in the severity of my symptoms.
I spend a whole lot of my time in Facebook Support Groups. It is such a great place to receive support and validation for rare, complex, and misunderstood conditions. I mostly participate in groups related to MCAS and Multiple Chemical Sensitivity, because those are the issues I am actively dealing with lately. And the ones I do not have much/any help to manage.
Anyway, someone in the group asked, have you accepted your illness? This was my response:
I keep progressing, so I keep having to learn to accept new levels of limitations. I don't know if I'll ever be able to accept being confined to one of two homes, and only able to be around 3 people. This life is too limited to accept. I've been sick forever. I've accepted that. I just can't accept losing almost everyone that matters to me and that still cared about me after being sick for so long. I value those people, and it hurts so much to see them slip away. I can accept eating 10 foods. But I can't accept that no one can even eat their food in the same home as me. It is just too much. I have accepted that I can not care for a child or have a family. But I can not accept that I can't even meet my own niece because her home is not unscented. This is all unacceptable to me.
Another conversation was about which class of chemicals you react to. This was my response:
I know I was originally sensitized to one class of chemicals, but it has always generalized and progressed. It was once only cigarette smoke, then generalized to all smoke. Then, it was only Dawn dish detergent, but generalized to all scented cleaning and laundry products. But I was safe with essential oils...until I wasn't. Now I react to any hint of any essential oil. And on and on. Rubber door mats. Then the smell of all cooking, followed by the smell of all seasoning Then artificial fruit flavoring (just the smell). Then natural fruit flavoring. Then mint flavoring. Then it got to the point I react severely to the smell of certain foods on someone's breath after they've eaten. And on and on. It has generalized to the point that I seem to react to all scents now.
So, I guess I'll pick up my diary of reactions where I left off, on Christmas Eve. Gustavo came home that night, having been in a scented home around scented people, and he came bearing scented gifts in scented wrapping paper. (Nothing he brought in was actually a scented product. In fact, there were many unscented products. But they had absorbed fragrance. So it was all a "second-hand" fragrance exposure- maybe 3rd hand?) Anyway, I developed facial pain at a level 8 and my eyes were burning. I was also in a panic at all the fragrance brought into the house. I had to take everything scented and get it outside to air out, quickly. And Gustavo had to change clothes and shower, quickly. It really is an urgent situation, because the longer the exposure, the more severe and prolonged the reaction. Also, I couldn't let the scent absorb into any of our stuff. It was also hard to deal with emotionally, because I had completely isolate myself all day, missed out on the festivities, and I still had to suffer the consequences. I was also distressed because video-chatting just hasn't been working well. We tend to have a poor connection, so even though we try to have me virtually participate, it really isn't successful.
Anyway, that was my delightful Christmas Eve. Christmas Day was rough, too. I woke up with burning eyes, and developed a migraine (with visual aura) during breakfast. Then, I reacted to the smell of coffee that my husband was drinking, even though he drank out of a thermos. The coffee on his breath was enough to trigger an intense burning in my torso. So, then we went to mom's house, where I hid out in the bedroom, apparently safe from any scents downstairs. Unfortunately, I hadn't accounted for the heating system sending air from downstairs up into the bedroom through the vents. I ended up with facial pain level 7 and bladder pain/symptoms.
So, December 26, I was really suffering from the holidays, even though I had not actually been around any people. My eye burning was severe. I had diarrhea (this is a really unusual symptom for me, since I have suffered chronic daily constipation since age 18. So diarrhea is my body's strongest sign to me that I am having a reaction, since it is so abnormal for me). Unfortunately, the barometric pressure was also really high that day, so I suffered global head and face pain.
December 27th was much the same. Diarrhea, burning eyes, severe sinus/facial/temple pain, photophobia, and nausea. I was also briefly exposed to woodsmoke outside.
My birthday was the 28th. There wasn't much to do in the way of celebrating. I spent it with my 3 people (mom, stepdad, husband) at mom's house. The barometric pressure came down, and my symptoms wore off a bit in the evening. I think we played cards or a word game. That was about it. At least there were no new triggers that day!
December 29th was a disaster! I was finally feeling better. This has happened so many times, I should assume that feeling better is an omen that something horrible is about to happen. And it did! I was home alone all day and evening, as my husband was out with friends after work. The sewers to our apartment building froze and backed up into our bathtub and toilet. I had to spend hours that day scooping water out of the toilet and pouring it outside to prevent it from overflowing. Unfortunately, someone in the building had taken a shower before knowing about the plumbing problem. So all of their scented shower water came up into our toilet. I scooped and dumped bucket after bucket of water, while wearing my respirator. It went on for hours, and our entire apartment was flooded with fragrance. This was the beginning of the nightmare. At 11:30 that night, Gustavo came home. The neighbors had all stopped using the water, so there was no more water to scoop. But I had to get out of the apartment. It was totally contaminated. We moved me over to my mom's house at midnight. Gustavo had to spend the next 2 weeks scrubbing and airing out the apartment, in winter weather! I don't know how he tolerated the low temperature and humidity.
The following days, I had plenty more exposures. After an exposure like that, I get sensitized, and begin reacting to new things. On new year's eve, I reacted to the smell of coffee brewing in the kitchen while I was sleeping upstairs. The smell came in through the vent and triggered severe burning in my chest/stomach. The burning persisted for at least a week. And I was still suffering severe head/facial pain from the sewer problem. I slept terribly for several days. The barometer went really high again, compounding all of my pain. It was really cold outside, and I began reacting to the smell of fireplace smoke seeping into the family room at mom's house every night. I was dealing with a lot of eye symptoms, too. Photophobia, swollen red eyelids, burning pain. The eye problems have persisted all winter, and I haven't worn contacts since Christmas. Too bad my glasses make my headaches worse, because I am blind without them. I also absolutely hate how I look in glasses, but all vanity is lost at this point. I dealt with a lot of bladder pain and symptoms as well.
I think I finally felt a bit better on January 7-8. The temperature was milder, so the heat was running less. And I had no exposures at all those days!
The next week was more of the same. Mild exposures, constant symptoms. The barometric pressure has not been my friend this winter, contributing to a lot of pain.
On January 13, I was exposed to the smell of hot peppers on my husband's breath. He didn't eat at home. The smell was just still on his breath. I developed what felt like fire in my chest and private area. This was a new symptom for me, that has recurred at times. I also developed bladder pain and frequency, mild throat swelling, and red eyelids.
The next day, I was still suffering. I awoke to diarrhea, the clear sign that I've been exposed to a trigger.
I suffered increased indigestion and burning inside for the next few days, along with nausea.
I trialed a new food, sweet potatoes. It did not go well. My abdomen swelled about 4 inches beyond it's normal size. I was bloated for a few days after that, and I slept terribly.
Then, on January 22nd, it was time for another medication trial. This one was purely for my own knowledge. I had to be my own lab rat again. I had to try a different brand of Klonopin to help me find out what I react to in another brand. I learned that Yellow dye #10 causes me severe diarrhea, insomnia, heart palpitations, and bloating. Good to know a clear trigger, but unfortunate to go through, as it took 2 days to confirm, and a few more to recover.
The end of January, I was mostly dealing with scary low vitals. My blood pressure was as low as 74/49 with a pulse of 55. It didn't ever reach 90/60 for several days. The barometer was up and my digestion was really slowed, causing nausea and reflux trouble. I'm on a lower dose of Omeprazole now (because it is the only one without red dye). So, I deal with a lot more heartburn and reflux than I used to. This is painful and makes me nervous, since my grandma died from esophageal cancer. I can't let this reflux go on indefinitely.
January 30th was bad news. The barometer dropped hugely. And I had to go to the psychiatrist's office. The office is inside a hospital building, and there are always plenty of scent exposures there. I wore my respirator the entire time and kept my coat on to keep my skin covered. I was inside for about 45 minutes. And, I've been suffering ever since. That day, I thought I had escaped a severe reaction. I had facial pain, exhaustion, mild burning and reflux. But the pain could have been from the barometric drop and wearing the respirator.
Unfortunately, the reaction was strong the following days. Sleep was poor. Migraine was persistent. Digestion was a mess. Bloating and diarrhea and reflux. Widespread burning throughout my torso. Vertigo and nausea. All of that was pretty constant.
Then, my next big disaster happened. We actually had some plumbing repairs done on Wednesday last week. I could smell a scent around both sinks, but I thought I was tolerating it. I was already in a terrible reaction, so I didn't realize that I had also been reacting to a chemical used in the repair. Until Saturday night. We were watching SNL. During the musical guest, I had Gustavo look at the pipe under the sink, because it seemed to be leaking again. So, he took apart the pipes under the sink, and this noxious putty came out. I got immediate vertigo, weakness, collapse, nausea, mucus, choking, then heart pounding and internal vibrations, headache, facial pain, reduced consciousness, followed by sobbing. Luckily, a Benadryl helped with a lot of that. But sleep was nearly impossible. Heart pounding and vibrations all night. Vertigo so bad it felt like the bed wouldn't stop moving. Sunday, I developed severe diarrhea and was very anxious and restless. I finally got out of the apartment and to my mom's house in the afternoon.
I am still trying to think clearly enough to figure out how to solve the problem. It is in both sinks. And it is a small apartment. So now that I am sensitized to it, I smell it everywhere. I have ordered a couple of non-toxic products that may be alternatives to the putty, but I can't be sure they will do the job. And I don't know when it will be done, or if we can get both sinks dealt with.
I am beyond frustrated. We had finally gotten the scent from the frozen sewers mostly out of the apartment. Now, who knows how long until I can move back home. I was essentially poisoned, so I need to be absolutely sure it is safe there and cleared of any residual chemical before I can go back.
After the exposure Saturday night, all I could do was sob and pray for death (and I don't believe in God). It's a weird obsessive thought that gets in my head after certain exposures. I am not suicidal, but some chemical exposures trick me into feeling that way, and I can't think about anything else. And then weirdly enough, the Benadryl kicked in, and my head went back to the "just deal with it" attitude I usually have.
I spent Sunday mostly alone (Sports Go Sports!). I have been sensitized again, so now I am reacting to some residual smell of fabric softener in the dryer vents that leaves a hint of fabric softener smell on clothes. I don't know how much more sensitive I can get to that poisonous smell. I had a lot of burning, body pain, nausea, and diarrhea all day.
Today is Monday. Day 6 of reacting (to the psychiatrist and the putty). Diarrhea is the worst it has been. I've lost 6 lbs. in as many days. Abdominal cramping was bad today. I've had facial pain and a headache, but no new exposures! Tonight is the most at ease I've felt since a week ago, before the trip to the hospital. A day with only diarrhea to deal with is a huge relief.
I'll be staying at mom's house until all residual putty smell is gone (hopefully). The bad news is, I have another doctor's appointment in 1 week, and another one 2 weeks after that. Next week will be my annual visit with my autonomic neurologist. I need to remain his patient, so I need to see him yearly, even if he isn't able to help with my current problems. I don't know exactly what I need to discuss with him or ask him for. Probably, I need to try compounding a PPI for the burning. But I actually have another medication trial to do before then. I need to try Nexium without the capsule. Apparently, you can just take the contents, and avoid all the dyes and gelatin that I react to. But that means I need to get back to baseline again, and then I need to risk ruining it with another medication trial. So, that will probably be my goal for later this week. Lab rat time again. It would be a simple solution, since Nexium is OTC, and I could just take more on bad days and less on good days.
Then, at the end of the month, I'm seeing the ophthalmologist. These eyes have been troubling me for months now, and I really miss my contacts. I think I have chronic dry eyes, causing the burning and abrasions. But I also have edema in the eyelids, probably from the MCAS. I haven't been in that medical building in many years, so I am scared to find out what the smell will be like, and I deeply dread getting sicker just to try to feel a tiny bit better at these doctor's appointments.
Well, sorry for writing another dissertation. I should really write more often, but the good days are few and far between. I am so lucky, as always, to have my support people, helping me through the meaningless suffering that is my life. I desperately wish I could be more to more people. Hopefully, one day, something will change. But I would settle for the downward spiral stopping.
I need to retrial the medicine called Gastrocrom. It is a mast cell stabilizer. I still have it here. I will be trying to titrate up extremely gradually this time. Because it is known for triggering a flare when you start it, and with every dosage change. But it is very stabilizing for many people after that. I just don't know when I can try it. It looks like March, because February is already a loss.
Thank you, thank you, thank you to those who read my saga and support me through this.
I have a few fun links today for anyone interested:
A great article about visiting someone with chemical sensitivities: http://www.ei-resource.org/expert-columns/dr-gloria-gilberes-column/visiting-a-victim-of-chemical-sensitivity-without-compromising-their-health/
An abstract explaining how chemically sensitive people can be sensitized to essential oils and the smell of food: https://www.ncbi.nlm.nih.gov/pubmed/26030111
The emotional aspects of multiple chemical sensitivity: https://themighty.com/2017/04/emotional-aspects-multiple-chemical-sensitivity-mcs/
This article has an excellent quote about the emotional pain of chemical sensitivitis: "And let’s not forget feeling discounted when family and friends choose their toxic fragrances and products over being in a relationship with us, or the frustration and often anger of knowing that the world in general is toxic to us and the helplessness of having to choose to be home-bound so we aren’t sick all the time."
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.
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.
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