It’s been ten years since I got sick. It’s been one heck of a war, separated into times of high battles, prolonged sieges and relentless small skirmishes. I couldn’t have imaged ten years ago that I’d still be fighting this war. Things have been very, very difficult lately. I realized that I stopped writing because I didn’t want to complain, didn’t want to always be talking about my health. I mean, it’s gotten kind of old. I can’t say that things are great and rosy, because, man, my life is bloody hard. There are some good moments and joy and love, but it felt false to share that when I didn’t include the crappy stuff. So I stopped posting here and in other social media. A friend recently wrote this post for her 10th anniversary, and of course, it brought me to tears. It reminded me that I’m not alone, and that maybe it’s okay to send up a little flag now and again to let people know what my life is actually like. I really do want to share the good, the bad and the ugly. I don’t like reminding myself of just how long it’s been, or how much things can suck, but if I don’t tell people, how will they know? So, like my friend Liz, I have a list.
For the last ten years:
- I’ve been itchy. Everywhere. Always. It’s better or worse, but always there. I still have doctors gasp when they look at my skin, even when my skin is relatively happy.
- I’ve been tired. From an overwhelming ‘masto coma’ to never waking up feeling rested, I still feel like my internal engine is barely running.
- I’ve had unexplained upper GI pain. I still haven’t had a colonoscopy.
- I’ve neglected my friends and family. I still have a few left.
- I’ve had tinnitus. A lovely high pitched noise, just squealing away. It isn’t awful, just annoying. I still have no idea why.
- I haven’t worked. I loved my job as and AAC SLP. I still miss it. I had to turn down teaching a course at UBC. It was a dream job, offered to me a month after I got sick. It still hurts.
- I’ve been nauseous. When I am on my full med compliment it’s almost quiet. I’m still being denied some of those meds.
- I’ve been taken care of by my husband. There have been some major bumps, but we still love each other, and he still takes care of me.
- I’m in pain. My joints, muscles, and bones hurt. It’s like the body ache signaling a virus; not horrible, but it still drains my energy.
- I’ve spent hundreds of hours beading, making jewelry and a few other crafts. I still love doing it. (and I’m getting pretty good at it, if I do say so myself).
- I’ve been having allergic reactions. At times I have anaphylactic reactions that require epinephrine once a month, at times, multiple times a day. I still have to convince doctors that I know when I need epinephrine before they do.
- I’ve missed so much with my children. They were 7 and 2. They are 17 and 12 now. This is probably the hardest thing to cope with. It still hurts, acutely, but they’re still the main joy in my life. They are amazing kids, despite the challenges!
For the last five years:
- I’ve worn an N97 equivalent mask in public. Now that you all know what masks are like, you can appreciate having to wear one that filters scent, particles way smaller than bacteria and viruses. I still hate the darn things.
- I haven’t done any reactional sports or outdoor activities. I haven’t been swimming, skiing, boating, hiking or camping. I still think of myself as an outdoors-y person, but I can’t express that part of myself.
- I have lower GI pain. I still haven’t had a colonoscopy.
- I haven’t gone to a restaurant. The smell of cooking onions, pork or fish (or a million other things) will send me straight into anaphylaxis. I still miss eating out.
- I’ve had PTSD. I can now go to an ER without having a panic attack, but I still don’t feel safe in a hospital. (This isn’t only psychological, I really am safer taking care of myself).
- I’ve had a central line. I still don’t have a doctor who will take any responsibility for it, I still constantly have to justify why I need it.
- I have had recommendations for treatment from the top MCAS specialist in the world. (Dr Afrin) I still have allergists claiming that I don’t have MCAS, and refusing to provide (at least one ) of the treatments he recommends. (CDI- Continuous Diphenhydramine Infusion, also known as 24/7 IV benadryl, which has worked wonders for me, but I can’t get right now.).
- I’ve had a very limited diet. Anything resembling a balanced or healthy diet is utterly out of reach. (Right now I can’t eat any fruits or vegetables. I can eat only (well cooked) wheat, beef, most dairy, eggs, chocolate, coffee, safflower, coconut and sunflower oil, and a bit of mustard and ketchup on occasion. What I’d give for a fruit salad.).
For the last three years:
- I’ve stayed home. Travel simply isn’t an option. (even before COVID, dealing with an airport and airplane, or a hotel, there are just too many fragrances and food smells.)
- I haven’t showered or had a bath. My body can’t regulate it’s temperature, so I bathe out of water. (It does the trick, but what I’d do for a nice long soak.)
- I’ve grieved the loss of my three closest friends with MCAS in BC. One of my best friends died almost exactly a year ago. I am still angry that I couldn’t help her, even though she could have been helped.
- I’ve had sore teeth. I have at least six ‘dead’ teeth in my mouth. They are black and breaking off, but at least they don’t hurt. I don’t have a single tooth in my mouth that is intact. They all have fillings, all have cavities, and none of them can be realistically saved. I had one removed a year ago, as it had an infected abscess. I reacted to the bone graft material that was used, as a consequence my body tried to reject all foreign bodies- including my port. It still hasn’t healed properly. And I still haven’t been able to have any more work done on my teeth. (It’s one thing I’m vain about- I hate looking like I’m not taking proper care of myself. Oh, and they hurt, too).
- I’ve had neurological symptoms caused by a brain tumor that has mast cell involvement (a meningioma). I wasn’t told about the tumor for well over a year, and the fact it is symptomatic was dismissed as ‘impossible’ by all of my physicians except the one who actually knows what he’s talking about. I have an MSc from the department of medicine at UBC, and used to work on the traumatic brain injury unit at the largest rehab hospital in the province, and it’s in MY body, but I am still dismissed as not knowing what I’m talking about.
It’s been quite a war. I’m not as strong or resilient as I used to be, but I still have some fight in me. I still have family and friends who love me. I still have things to learn. I still have things to discover, ideas to explore, and things to teach. I still have hope, I even now have a theory of my illness, and possibilities for much more than symptomatic treatment. (Even if I’m right, it will be a ways off, but it has real promise). I’m war-weary. I’ve come close to the edge of defeat a few times, but I’m still here. I’m not done yet.