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.
