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.
