For nearly a year now, I have been bobbing up and down on the waves of life, trying not to get swamped or washed overboard as I navigated managing my health and maintaining the active role I must play in all of Tony’s therapy programs that transpire outside of our house. These programs are essential to what we are trying to achieve when it comes to his ability to function safely in the community, and because Tony is an individual who will still frequently try to use the force and weight of his body to get what he wants, they would crash upon circumstantial rocks and cease to exit without me. Legally, in Arizona, none of his providers can block him without special certifications, and understandably, the company that provides his ABA services doesn’t want to take on that kind of liability even if they had a therapist available who had that extra training. Which means I am always a necessary (and unpaid) member of the therapy team when it comes to any therapy activity outside of our house.
Emotionally, getting through the past three years or so was already like trying to safely pass through the edges of one maelstrom after another. I managed to get through a lot of heartache without being ripped apart, but I was already limping towards what I thought was a safe, healing harbor while just barely holding everyone on this ship together when I went into anaphylaxis this past January and then developed POTS (postural orthostatic tachycardia syndrome). The timing was scary enough without the ramifications of what it could mean for everything I hoped to see for Tony and our family. Considering that made it absolutely terrifying with the potential for heartbreak.
Even at the time, as I reflected with my current allergy team, I realized my body was trying to give me signs of new food allergies for a while. Swelling in my lymph nodes, (but as a chronic allergy sufferer, that’s often just a thing even if nothing has changed) and some new rashes with small hives. Ok, a person might think that should have been something that would have alerted me, but honestly, there are so many things that cause contact dermatitis with rashes and hives for me, it’s really hard for me to tell if something was the food or something I touched. My food allergies had gone through an unusually long period of stability, so I didn’t cast a net as far as I should in looking for answers. And there I was this past January, recognizing my own folly in not regularly visiting an allergist given my history. Now it feels like I’m there all the time comparatively speaking, but realistically, that’s what needed to happen.
Initially, my new allergist was thinking I might have mastocytosis. I felt like I won the lottery when testing ruled that out, and while being told mast cell activation syndrome was quite likely what I was dealing with felt like a substantial upgrade, dealing with the reality of reacting with hives to more things than I have in a really long time hasn’t been the greatest. The list of things I can’t touch right now because my body is reacting still keeps growing, though the pace is slowing down considerably. My allergist is currently recommending Xolair, and I will probably meet with him sometime after Christmas to talk about it.
Medications are never my first choice, because I have a history of reacting to them- sometimes quite dramatically. So it’s not something I am willing to start without a more involved conversation about the reasoning, the pros, and the cons. I did kind of compromise with him on the amount of antihistamine I’m agreeing to take (my allergist has recommended more than I’m currently taking). I realized I was probably cold all of the time this past spring and the first part of summer because my body was producing a lot of adrenaline trying to fight off everything that wasn’t making my system happy, and that stopped once I went back on the Allegra and two Vistaril. For me, that low a dose of Vistaril isn’t enough to make me sleepy, but with the Allegra it’s enough to reduce (but not entirely eliminate) my current allergy symptoms. More antihistamine makes it harder for me to mentally focus on everything I need to, so that’s about as much as I’m willing to take outside of trying to manage an episode of anaphylaxis.
Developing POTS was like looking at the prospect of shipwrecking every single day. Being physically strong enough to keep Tony safe as we work through his more challenging public behaviors isn’t just a matter of muscles. A heart rate going up too high, too fast with standing or physical activity has the potential to rip the mast off our proverbial ship and leave us floating adrift without an ability to move forward or safely carry Tony’s world on our own. The fear that initially harpooned through me when those symptoms hit was intense. I felt a lot of frustration initially in the diagnosis process because some medical providers wanted to look at what was going on in my world and say it was just anxiety…and I’d have to say, look, my heart rate is staying in the 90s even when I’m laying down sleeping right now. My fitbit tells me so, and that’s not something you see with anxiety, sorry.
While finding out POTS was part of the equation wasn’t nearly as bad as some other things could have been, when you have a history of anaphylaxis like I do, beta blockers aren’t recommended, Corlanor is horribly expensive (and I have resting heart rates that regularly dip into the fifties and occasionally even lower because I was actually pretty fit when this happened so it wouldn’t even be safe for me to take)…so that left me with lifestyle changes and no quick fixes except getting off any medications exacerbating matters with my heart rate. I’ve been doing every thing I can, but the process has been slow.
Yesterday Tony and I walked nearly two miles up the hill where we live to a grocery store, used their bathroom, and jogged part of the way back (one of the gifts of having a kiddo with extreme ADHD is he definitely has the energy to do this and so much more). The happiness I felt at being able to do that is blinding enough that any articulation I attempt could never do the sensation justice. I can jog longer before my heart rate rises too much right now if it’s down hill. I have to carefully strategize increases in my physical activity level, because I still haven’t regained full normalcy, though I am certainly able to do enough to do everything that is needed to take care of my children and manage my role in Tony’s therapy programs. Sometimes emotionally I feel the grieving and the loss for the capabilities that I want (right now, I’m only up to 13 minutes straight on my rower for example before I need to take a break because of my heart rate), but I try to spend most of my time oriented towards how thankful I am that my autonomic nervous system’s ability to regulate my standing and moving heart rate has improved enough to allow me to do everything that is needful.
Getting to meet with my good friend Gena regularly for breakfast since being vaccinated has been a true lighthouse cutting through a whole lot of darkness in my life, and I would want her every day to know what that has meant to me. But I’ve also been going out and making new friends recently, and I’ve been chatting with people on-line. To everyone that has taken the time to interact with me that way: thank you. You have helped mend my emotional boat, helped me to stay fit enough to sail through life’s other challenges. I’ve been making decisions about where I want to navigate my own ship going forward, and being recovered enough to have those options is a glorious gift.
As our son improves in his ability to generalize cooperation to others, I am hoping someday soon to sail our therapy skills ship into a dock where someone else can become a copilot, taking charge of helping Tony advance with his public safety skills. But until then, I will still be needing to do everything I can to balance out and manage the stress of navigating a trickier course through my own health and his needs as we move forward together.
