Rust Bucket Body

In October, I’ll reach the milestone of two years since my indolent systemic mastocytosis diagnosis. I cannot overstate how grateful I am to have a diagnosis, to have information and online support available at my fingertips, and to have some guidance about what to do to prevent my condition from deteriorating substantially. Because, frankly, I am deteriorating now. My long-term goal is for my health decline to be a slow one rather than a rapid descent and, unfortunately, that is only partly under my control.

I prefer to always be in control. If our family is traveling somewhere, I am the driver 98% of the time. Occasionally, on 12+ hour driving days, I will permit someone else to take the wheel for an hour, but I don’t like it much. The lack of control makes me really nervous. I do not drink alcohol nor smoke any substances and, before my diagnosis, I generally did not pop pills either. Menstrual cramps, headaches, post-surgery recoveries: I did not fill prescriptions for pain meds nor did I use over-the-counter meds like ibuprofen or Tylenol. With Raina’s birth, I endured 30 hours of labor pain and only then did I take a Tylenol PM – not because of the pain, but because I had been awake over 48 hours and I was told it might help me sleep. Summary here: I handled a fair amount of pain and I refused to medicate because I was generally unwilling to let something else have some control over my body. I learned to deal with pain, to appreciate it for what it was, and to recognize that temporary pain was just that: temporary.

And then the pain was no longer temporary. It was sustained, perpetual, and extraordinarily limiting. After Lola’s birth, I developed incredible joint pain that felt like it was happening everywhere: small joints like my hands, feet, wrists, and ankles, large joints like both my hips, just everywhere. I could not pick up my newborn baby without hurting. I could not grip a doorknob without wincing and wanting to let go. At that point, I began a relationship with non-steroidal anti-inflammatory drugs (NSAIDs). A doctor friend assured me that I could take up to 4 ibuprofen pills at a time and I began doing that, in the hopes that the ibuprofen would mitigate some of the pain. It didn’t really do it. My primary care physician prescribed me the arthritis medication meloxicam, which took the edge off but never eliminated the pain completely. Various tests and scans showed that I did not have rheumatoid arthritis, which was good, but nothing explained the root cause of my pain in the first place. I couldn’t figure out what behavior to modify to make the pain go away, and I now knew the pain was not temporary. At age 31, I committed to long-term medication and gave up some control over the path I wanted for myself and my body. Nowadays, post diagnosis, I take 14 pills a day in the hopes of controlling the symptoms of my disease, and I have an additional 8 prepared for emergency situations.

It’s ironic. A quick scan of my vitals indicates I’m in perfect health (normal weight, low blood pressure, low cholesterol) and then doctors see my drug list and they do a visible double-take. I’m not healthy at all or I’m really healthy while also being really sick. I cannot control the disease itself – my body will keep making defective and over-reactive mast cells until I die – so now I’m trying to control the severity of my symptoms through medication, diet, stress management, and daily behavior changes. The highlighted symptoms I deal with daily. I fear the onset of more.

One of the frustrating aspects about this disease is that it causes my body to be unpredictable in its response. A stimulus that caused mild-to-no reaction on one day might launch into a full-blown attack on another. It can be challenging to draw cause-and-effect conclusions. For example, here’s what happened this week.

On Tuesday, I had a blood draw at my hematologist’s office and I had no notable reaction. On Friday, I had some more blood drawn and my body raged in response. Historically I am a very difficult stick: I have small veins that like to roll and, due to my low pulse rate and blood pressure, not much blood pumps out if a stick is successful. It’s not uncommon for the phlebotomist to stick me multiple times before successfully hitting a vein and, once there, sometimes my veins blow or stop giving all together, which requires another stick of another vein. Friday continued this pattern. The phlebotomist dug around in my left inner elbow for a few minutes and she finally gave up on that spot when I could no longer keep my body from shaking. She then tried another spot on my left arm. After digging a bit, she successfully pierced the vein and then disappointedly sighed once she saw that my blood was just leaking out rather than aggressively spurting into the vial. That vein gave 3 half-vials before it quit. She asked permission to do a third stick attempt and that too was unsuccessful. In the end, I walked away from that experience with 3 half-vials of blood, 3 notably bruised spots on my inner elbows, and instructions to return the next day to draw 5 more vials.

I got home Friday morning, ate my oatmeal breakfast, and immediately started having escalated reactions. My belly started hurting and then my GI system forcefully evacuated everything inside of me. I developed a raging headache. I became very light-headed, I struggled to stand upright, and I wobbled when seated down. It was safest to lie horizontally, which is what I proceeded to do for the rest of the day. Exhausted, I went to bed at 8 PM that night and slept for the next 10.5 hours.

I felt great when I woke up, so great that I went for a walk outside that Saturday morning. Not wanting to push myself too hard, I mostly lay horizontally all Saturday too and waited for my body to stop flaring and to calm down. By Sunday morning, I felt mostly back to my baseline. I was having mild GI issues, but I felt good enough to exercise vigorously for 30 minutes. Exercising resulted in some pre-syncope symptoms an hour later but I was determined to push through. I had three main items on the Sunday plan – NARAL Zoom call and two Black Lives Matter vigils/marches – and I was determined to do them all.

The Zoom call was fine and the 1 PM vigil was not. In retrospect, I really shouldn’t have gone to the vigil and/or I shouldn't have exercised. Since I felt a little queasy after eating lunch, I debated backing out of the vigil, but I really, really wanted to go. I had backed out of three different vigils and protests in the previous week – ones I had intended on attending but my mast cells felt differently – and I am a lead organizer for this vigil so it felt even more important to me to go. So, I did. Twenty minutes into the vigil, I felt close to collapsing – light-headed and dizzy – but with social distancing there wasn’t safe space in the shade. About 10 minutes later, Samantha vacated her spot, so I moved out of the sun and into the shade. Cooling off in the shade wasn’t enough to halt my reaction, and I needed to lean into the fence to stand upright. I sat on the ground to make it easier for blood to be pumped to my brain and to relieve the pressure and headache. That wasn’t enough. I began to feel nauseated and I felt close to vomiting. I mentally noted that it would really suck to vomit while wearing a COVID mask and I wondered how close I was to a system-wide body shut-down. I pulled out my Epi-pen in case I went full-scale into anaphylaxis and I waited – either for my mast cells to calm down or for them to push me completely over the edge.

Six hours later I’m still lightheaded, still have a raging headache, still having GI symptoms. I don’t feel as close to anaphylaxis, but even so I cancelled the rest of my Sunday plans because I’m now spending the rest of the day lying horizontally. Sunday’s reaction was triggered by having a blood draw on Friday morning followed by exposure to heat on Sunday. Once my body went on high alert, I really couldn’t lower it from DEFCON-1; suddenly my body viewed every stimulus as a threat, and even something as benign as plain oatmeal resulted in an escalation of symptoms. As the above infographic shares, “symptoms can be sudden and unpredictable in onset.” Again, I had a blood draw three days prior without a reaction at all, but clearly my body struggled to manage the stress of Friday’s draw. I cannot wrestle control from my body or my mast cells; instead, I must submit to their whims and how they respond to external and internal stimuli.

My rust bucket body limits my choices and actions, as I try to guess what is safe, what might cause a reaction, and how prepared I am to deal with the possible consequences. I mostly feel like a complainer and a burden all the damn time. I look at most everything with hesitation and suspicion. I absolutely fear social events. Not only are there potential triggers but they come with a side of guilt. At a dinner party I know that I should not eat the food, but I don’t want to have to explain why to the host especially if they have gone to the explicit trouble to try to include some of my dietary restrictions. Potlucks are a full-stop hazard. I don’t eat if I cannot figure out the ingredient list, so I continuously graze on the celery sticks on the single requisite veggie tray. Alcohol is high-alert dangerous. Just the smell of red wine – from a glass, from someone breathing on me – is enough to cause a near-fainting reaction. But what am I going to do, tell people not to drink what they want? It’s someone else’s party! Instead, I slowly step away until there’s a safe radius around me where I cannot smell the alcohol. So, in the end, I look like a picky vegan wallflower who turns her nose up at what’s offered, puts herself on the outskirts, and acts like she doesn’t want to be there. Realistically, being that person is always the safest thing for me.

My invisible disability rears its head frequently and forcefully. And while I accept that this disease is mine, I’m continuously in battle with it, in battle with myself, and I sit in anger, frustration, and grief of what it has taken from me and what it will continue to take.