How has an entire year gone by in the time since I last posted anything here? When I left off last, my partner and I had just closed on a home in a new city where we knew almost no one. Moving proved to be life changing in more ways than one. The first was that we moved, obviously, but we didn’t plan that I would get covid the week after we officially started living in the new place. The only people I’d come into contact with in the past two weeks before symptoms started were a Lyft driver from our old home to the new one, our movers, and the Comcast cable installers. At my worst I was pretty sick. I spent a night in the emergency room after the nurse that my PCP’s office sent out to evaluate me conferred with the on call doctor who was concerned that my O2 was starting to drop and with how labored my breathing had gotten. I did not have a severe case, but I can tell you that lying on that gurney so tired I couldn’t pick up my head was probably the most seriously ill I have ever been since the time I was admitted for two days with pneumonia eight 9 years ago. Anyway, covid left me with lasting symptoms of severe fatigue and brain fog, and also massively escalated the symptoms of what has now been diagnosed as Mast Cell Activation Syndrome (MCAS) and Postural Orthostatic Tachycardia Syndrome (POTS). If I had been able to wait three and a half months, I would have been fully vaccinated against covid, but we don’t get to choose these things. Amazingly, my partner either never was infected or had an asymptomatic case which was really freaking lucky considering I was in no shape to care for myself at that time or in the following weeks and honestly the following months.
Life carries on. We’ve found ways to adapt with the limitations that long covid and the assorted issues I’ve had. MCAS has changed things significantly. For four months I struggled with uncontrolled allergic-like reactions to foods, environmental triggers, hygiene products – almost everything. I’ve had one trip to the ER after having a full blown anaphylactic episode where the back of my throat and uvula swelled to the point that I couldn’t swallow and needed two doses of epinephrine and probably a dozen other episodes of more mild anaphylaxis that I was able to get under control with the help of antihistamines. I carry two epi pens with me at all times along with OTC Benadryl capsules, liquid children’s Benadryl, and a compounded liquid famotidine suspension. For ten months, anything I ate had to be single ingredients or food prepared from scratch at home. The first six months of that I had a list of probably 15-20 safe foods with a handful of spices that we could cook with. My partner has been a godsend finding ways to combine those limited foods in many different ways. I’m at the point now where I can eat some things at restaurants and a limited number of pre-prepared foods at the grocery store. I still have a lot of dietary restrictions though. My safe food list is probably about 35-40 different foods and a greater number of spices and some condiments. How my body reacts to foods that are not on my safe list varies in severity. Sometimes it’s more mild with severe nausea, stomach pain, lower abdominal cramps, and diarrhea. Sometimes my face will get really flushed and I’ll break out into a rash. Sometimes, like when I last accidentally had maybe a 1/2 teaspoon of toasted coconut, my throat will start swelling, I’ll get really flushed, and get extremely dizzy. Finding safe topical products – soap, shampoo, shaving cream, laundry detergent – took months. We went through four fragrance and dye free laundry detergents until we found one without any coconut derivatives. Every time I used hand sanitizer, which since we are mid-pandemic was very frequent, my hands turned bright red and burned for at least a half hour. I couldn’t use conventional toothpaste without getting ulcers in my mouth and let me tell you, tooth powder is disgusting and the sensation was awful. Things are definitely better. I can use regular tooth paste again, and I’ve found shampoo and soaps that work.
Due to everything going on with my body, I have spent a lot of time in hospitals. I had surgery to repair a broken bone in my left foot in October after a stress fracture that had never had become a full fracture. I spent three months recovering after my surgeon removed the broken pieces of bone, took a graft from my heel, and then put everything back together with a plate and screws. I developed gastroparesis and had an endoscopy and colonoscopy right after Thanksgiving. Every three weeks I make a trip into Boston to the hospital infusion clinic for a set of injections that has majorly reduced my reactivity and given me parts of my life back. I am really grateful for having decent insurance that covers this – each set of injections costs $7500 and there is no generic. I check in with my PCP once a month, either in person or by video, to go over anything that has come up in the past few weeks and to make sure nothing is slipping through the cracks. My list of medications and supplements is hilariously long and the cost without insurance (though I would not be on some of these medications if I didn’t have health insurance) would be almost $350,000 a year out of pocket. I have a rant about the cost of medical care in the US but that’s a post for another day.
My partner has been a rock through all of this. I’ve had days where I am so fatigued that holding my head up off the couch is overwhelming. Those days are becoming less frequent, but I still have them every now and then. My partner has cared for me in ways I could never express enough thanks for in the past year and a half – making sure I am fed, clothed, able to get to appointments, able to access the care I need – all with love and never any guilt. I don’t know what I would do without her. I start specialized physical therapy in two weeks to try and help regain what I have lost over the past year and a half. The doctor I saw at the long covid clinic told me things will continue to improve, painfully slowly, but there will be improvement and each backslide will be less severe than the last. Life is feeling more manageable with time and with the gains I have made. There are definitely times where everything feels like too much and I don’t know how to keep going. My friend C, who has many similar issues as me, is always a text or phone call away. We have grown even closer as we both manage our numerous health issues, supporting each other and holding each other up when needed. I don’t know what I would do without her.
My hope for the future is something that I would not have had several years ago. It’s been hard one but I am so very grateful for so many things.
