Immunologist Follow Up: Traveling to MI

        

Is there anything more inspiring than a blank, wide open road to a person who has any kind of illness? I know when I see such a road, I am reminded of potential, vast experiences yet to come, a day with new opportunities, a day full of optimism, hope, and motivation. And if I'm being completely honest, I'm also reminded of how exhausting that very road of opportunity looks to someone who crashes from the simplest of life's day-to-day happenings. Nonetheless, I remind myself to see the beauty in the open road of life: the ups, the downs, the good feeling days, the not-so-good-feeling-days, and take joy in them all. 

I first saw the Immunologist (whose name I purposely do not disclose) who practices out of Michigan a few months back in July. One of his tests included a specific Mast Cell stain from colonoscopy biopsies. It took 6 long weeks of waiting, but the biopsies confirmed and supported the Mast Cell Activation Syndrome that he suspected I have at the initial Doctor visit. He wanted to follow up with me in October so the time came to travel back to see him. 

While any kind of "me time" is nearly non-existent in a Mom's world (especially in a Mom's world when husband travels overnights weekly for work), one would naturally think I would love the almost 6 hour drive alone. However, I think of all the things I could do with that time besides being stuck in a car. On the flip side, I am so very thankful for a husband whose exceptionally supportive and helpful to me as I go through this health journey and, because of him, I am able to make these journeys to this Doctor and that is not a typical Mom's life experience. 

While "most" people's 'fast food' includes a paper bag with Wendy's, McDonald's, Arby's, Taco Bell, or Chick Fil A on it, my fast food just includes eating homemade food while driving fast 😉 (Gotta love those 70 and 75mph highways in Michigan!)  

     

My absolutely amazing, doting, caring, thoughtful, kind, loving husband prepared me a to-go dinner! All I had to do was reach over into my cooler and eat it. He packed a dinner salad with homemade vinaigrette and pot roast with rice. And while I have to be super careful with consuming vinegars, as long as my body isn't in a severe reactive day, I can tolerate it in very small quantities once in a great while. I felt so spoiled by this meal as the last time I traveled to this Doctor, I forgot all the food and snacks that I had packed for myself so I had nothing to eat. (Thank goodness for hotel fresh fruit and coffee to stock up for the drive home). But, 3 months later, and coffee is a "special occasion" luxury food item because of it's troubling side effects on my esophagus, reflux, and POTS. 

Briella's note to me as I left. I kept it on the passenger seat and looked over at it numerous times while I was driving. It made me smile every time and Gianna's beautiful rainbow picture was left at home, but she made me a going away note as well. I'm so fortunate. 💗💝

When I checked in, I was offered a snack. It had been almost 2 hours since I ate my fast food dinner 😉 in the car so I saw these chips and thought, "Gluten free, Non GMO verified...why not?" It wasn't even 5 minutes after I ate them that my face turned bright red. I had insomnia all night long. When I finally got out of bed the next morning, I felt like I had been beaten up. My face was sore, my eyes were swollen and throbbing, my stomach was bloated, and my feet and toes were painful to walk around on the floor. I felt awful and all because I ate a small bag of new chips! Yes, that's all it takes.  

My appointment wasn't until 10am and that allowed me a few hours to get myself moving so to feel a bit more human after the terrible chip reaction before arriving to see the Doctor, but the reaction left me with raised, red spots on my face. The Doctor was open minded, turned a listening ear, and offered solid advice. I told him that the current regimen was not doing "much" so he prescribed double dosing everything I am already doing and adding in a Mast Cell specific nasal spray for my chronic post nasal drip. He read my facial expressions and said, "You don't like what I'm saying." He was very right. I have been doing everything in my humanly power to avoid prescriptions for all of these years that these past 3 months, since seeing him in July, is the most prescription medicines I've consumed in my entire life. The mere idea of doubling my already comatose-inducing dosage was a bit overwhelming to hear. His suggestion was to take it all at night. Since I feel my worst when I wake up, the medicine could help combat the "mast cell dump" that happens overnight. 

He sat with me for a solid 40 minutes in that room talking, listening, and thinking. And while I waited for the nurse to write up my prescriptions, he even popped his head in the door a few minutes after leaving my room and asked, "Is there anything else you need or want to talk about? I know you drove a long way here." He's a kind man. And while he was right that I did drive a long way there and it felt a bit depressing that it was only to get prescribed more medicines, I was appreciative of it all. 

That's the conflicting place I find myself with all of this MCAS stuff is that it's a constant maintenance issue now. There's going to be peaks and valleys with my progress. It's a constant trial and error way of living with everything I consume or that touches my skin. 

Nevertheless, I am thankful that I have a diagnosis, a Doctor who finally confirmed it, and a medicine plan to hopefully help me have "better" days.