Today, I lose my mast cell care team. My MCAS specialist is moving across the country. This is upsetting, but not unexpected. I knew I was extremely lucky to have easy access to (arguably) the world’s best MCAS doctor. I was grateful for every minute of care I received. He truly saved my life.
This is what I did not expect:
- The university did not notify me, cancel my appointments, refill my prescriptions, or recommend new doctors until eight days ago – after I contacted them. They knew my doctor was leaving in May.
- I found out on Facebook that my physician assistant, who has treated me for two years and has a valuable understanding of MCAS, is no longer allowed to see me, because…
- The university will no longer treat MCAS.
I also did not expect:
- Fellow MCAS patients to call Minnesota MCAS patients “whiners” for sharing their concerns about losing their care.
- Fellow MCAS patients to accuse me of “doctor bashing” for expressing my outrage at the university’s mismanagement.
Amidst this turmoil, my kidney pain continued to gnaw at my body. I called the university, almost in tears, asking where I was supposed to get help. They recommended two allergists. I asked if they were kidding. I told them I’ll likely end up in the ER. So they offered me a final appointment with my MCAS doctor the following day.
My doctor and I discussed my pain, my kidney stones, and the possibility of kidney disease. I was stunned. On one hand, MCAS may be destroying my organs, and on the other, the university doesn’t believe my disease is serious enough to provide continuity of care. My doctor recommended I follow up with a urologist about surgery.
And then we said goodbye. I tried to maintain my professional composure while expressing my utter gratitude. I told him I am excited for him to advance MCAS education and research. His final notes in my chart read, “I thanked her for the privilege of having been involved in her care, and she thanked me for the care I’ve provided.”
For now, I am putting the turmoil aside. My kidney demands my full attention. I’m preparing for a painful surgery, gathering documents and praying the doctors will adhere to the mast cell protocol.
“What’s the disease called?” my new urologist asked.
“Mast cell activation syndrome,” I said slowly, as he wrote it down.
Lately, I’ve found comfort and inspiration in doodles. These are my favorites on Twitter:
After finishing a delightful Sarah’s Scribbles book, I decided doodling would become my new hobby. Doodling will give me joy and purpose! I will spread laughter and cheer!
So I watched a few YouTube videos on Adobe Illustrator. I can totally do this!
I realized I could make an amazing infographic to help explain The Histamine Bucket metaphor for mast cell disease. I’ll doodle an infographic that is so informative that everyone in the world will understand MCAS!
I opened my laptop and got to work. I love new projects!
A hour passed. THIS PROGRAM DOESN’T MAKE ANY SENSE!
I don’t think I’ll be educating the world about MCAS by doodles any time soon. That squiggle in the upper left is just spite.
But I didn’t give up. Because failing at doodling is embarrassing.
I figured out how to use the shape tool, but only the shape tool. I am a brilliant shape wizard!
That’s actually a fairly cute poodle. Unless you have a phobia of poodle and spider crossbreeds.
My quest for a new hobby continues.
My grandma was the first chronically ill person I ever met. She suffered from emphysema and was confined to a couch and bed for the last 7 years of her life. I slept over at her house often. She was desperate for company, and I, less than nine years old, was desperate for attention. We were best friends.
At night, we’d share a full-sized bed and recite the Lord’s Prayer together. “Amen,” she would say as she pulled the covers over my head.
And then she’d fart. Purposefully. You can guess where I got my sense of humor.
Although grandma’s body was failing, her mind was sharp. She spent her days watching “Murder, She Wrote”, playing handheld electronic poker, and completing crossword puzzles.
I can’t imagine seven years of confinement WITHOUT INTERNET. (It was a big deal when she got a cordless phone.) I wish I could ask her how she kept her sanity. Did she really like crosswords or did she just need to keep her mind busy?
Yesterday, I created a crossword puzzle. I don’t even like crosswords. Of course, I’m also terrible at them. However, I needed something to do, something to distract me from feeling sorry for myself for missing out on summer.
Sometimes, we just need to keep busy. So here’s a crossword puzzle for you to enjoy:
Hell’s Bells and Mast Cells Crossword Challenge
…unless you don’t have mast cell disease. Then you won’t enjoy it, because it’s full of ridiculous MCAS terms that no average person should know.
If you complete the crossword, please let me know in the comments below!