Within our means
Moving to New York City immediately after college, I quickly learned what it meant to “live within my means”. I didn’t stop enjoying life just because I was living hand-to-mouth or because New York is a financially devouring monster of a city. No, I just took full advantage of TKTS, student prices (thank you Northeastern University for not putting a date on my school ID), and restaurant week. I lived outside of Manhattan in, then slightly cheaper, Astoria, Queens and walked or took public transportation everywhere. As time went on and my means grew I was able to indulge in more fancy dinners, nights out, and the ultimate luxury: cab rides. I bring this up because this week I realized that, while we still practice living within our financial means, that I needed to reassess how we could best live within our wellness means.
Just before we left for our Michigan vacation we discovered that Adelaide was no longer tolerating her immunoglobulin infusions aka IVIG. You can read more about these infusions and mast cell activation syndrome (MCAS) in “Adelaide and the Seven Doctors” and “Mast Cell 101”. The abbreviated back story is that the IVIG treatments were added to help regulate her MCAS as well as her dysautonomia. I don’t get what immunoglobulins do or how they work, but these Infusions did what they needed to do and that was enough for me. Then, at the end of May, Adelaide began having screaming fits. She shrieked and writhed in pain as if someone were yanking the teeth out of her head. The doctors diagnosed her with a condition colloquially known as neuro-storming and started her on new meds. Over the next three weeks we saw improvements and then the wheels fell off and we ended up right back where we started. We were admitted to the hospital, increased her meds and again went home with a seemingly better Adelaide…until three weeks later. It took three episodes for me to correlate that the tortured episodes aligned with her IVIG infusions which occurred, you guessed it, every three weeks. We had questioned if the IVIG was responsible at the onset of the new symptoms but she had been receiving the infusions for over a year. Why would she all of a sudden stop tolerating them? Well, we learned that mast cells don’t adhere to logic and that they can reject therapies, out of the blue, that once worked swimmingly. Fan-f***ing-tastic.
Needless to say, we stopped her IVIG infusions but we weren’t sure how her body would respond. She had been getting them for such a long time, maybe she didn’t need them anymore? Wrong again! After about a month, Adelaide began having flushing episodes with rashes and extreme irritation. While not as intense as the tortured cries of months prior it is still incredibly upsetting to hear and see her be so uncomfortable. Benadryl has helped which tells us that it is a histamine issue, ergo, mast cells. We have increased her mast cell medications which has kept her regulated in the safety of our home… most of the time, anyway. Here, we can limit scents, allergens, loud sounds and anything else that offends her sensitive mast cells. Despite the med changes, the same cannot be said once we travel outside - which we realized very quickly this weekend.
She seemed to enjoy a one hour picnic in the park, but fell apart as soon as we got home. By the fourth inning of Jackson’s baseball game she was red and screaming. Ten minutes into a 300 person fundraiser for the amazing organization, The Nora Project, she was letting us know it was time for her to go. Without the benefit of these infusions we are having to learn her new limits and live within those means. Also complicating matters, is her increased oxygen requirements which are unlikely to get better. A portable oxygen tank that used to last us 4 hours, now lasts 2. To prevent requiring a ‘highly flammable’ sticker being added to our mini-van its probably best if we only keep a couple tanks on board, which then limits the amount of time she can be away from an outlet to plug in her electric-powered concentrator (portable concentrators are not covered by our insurance and are crazy expensive to purchase). I used to have getting Adelaide out of the house down to a science, but now new systems need to be put in place, new factors taken into consideration. Just as we all have financial budgets, Adelaide has a wellness budget. Traveling 45 minutes to spend Labor Day at a friend’s gorgeous country club, where we will be mostly outside and far from home, is outside of Adelaide’s means. But we can still walk to a friends house in our neighborhood where we can enjoy the day and have Adelaide set up inside in a more regulated environment. More importantly, if she still can’t manage, we can quickly get her home. We have also been talking with her medical team about measures we can take to increase her wellness capacity away from home. So, from now on she will be pre-medicating with anti-histamines or steroids and wearing little masks with filters that sort of make her look like the youngest and cutest surgeon you’ve ever seen.
I also have to remember that Adelaide’s wellness barometer is tied, glued and bolted to my own stress threshold. The better we live within her wellness means, the less we’re putting my capacity to handle stressful situations to the test. The less stress I’m managing, the better I can take care of her and the happier we all will be. The Cervantes family will still have adventures, they will just take even more coordination than before. Yes, this is mind-numbingly daunting but we can’t stop living and loving our lives. That said, I would gladly take a scientific breakthrough any day now. Please and thank you.