I have a love-hate relationship with hospitals. While I depend on hospitals to survive my mast cell reactions, they can also inhibit my recovery or even be dangerous. In many ways, the hospital is less safe than my home. Here are a few reasons why:

Hospitals can’t feed me

The list of foods I can’t eat is longer than the list of foods I can eat. For example, I can’t eat garlic or corn syrup, which eliminates most menu items. At home, I have to cook fresh and organic to avoid reactions. In order to eat in the hospital, I must rely on friends to bring me specific brands of food that I trust.

 Hospitals can’t even offer me a beverage

I can’t drink tap water nor most bottle water. At home, I only drink Fiji water and lactose free milk. During my most recent hospitalization, I needed to drink water to make sure my ureter was working. I didn’t have any Fiji water with me, so I tried drinking the tap water, willing my body to accept it. Unfortunately, that’s not how mast cell disease works and my throat swelled half shut.

Hospitals don’t have the medicines I need

Two years ago, I had a life-threatening mast cell reaction. An ambulance quickly transported me to closest emergency room and I was given IV medications as I clung onto consciousness. Hours later, the ER doctor asked if I would like to be admitted to the hospital. I wanted to be admitted, having almost died, but I had to decline because they didn’t have my medications. These days, I try to carry most of my medications, a full tote bag’s worth, on me at all times, but surprise reactions happen.

Hospitals are full of mast cell triggers

Inevitably, during my hospital stays, my IV triggers a rash and someone wears perfume into my room. Sometimes the triggers are surprising. Recently, a well-intentioned nurse offered me heat pack for my back. I hesitated at first, but it felt wonderful when I placed it on top of my inflamed kidney. Within two minutes, my skin erupted with hives and my blood pressure dropped. The nurse didn’t offer me anything new after that.

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Surviving the hospital with mast cell disease is a feat. Once my life-threatening reactions are under control, I leave the hospital as quickly as I arrived (usually exclaiming, “Get me the hell outta here!”). I am always grateful to return to the safety of my home.

For the last two weeks, while waiting for kidney surgery, I’ve been stuck in a lose-lose situation. I’m allergic to pain and I’m allergic to my pain pills.

When I say “I’m allergic to pain,” almost no one takes me seriously. After all, isn’t everybody averse to pain? I have to explain to my nurses that pain can trigger my mast cells to release loads of chemicals and cause severe, sometimes life-threatening, reactions. When severe pain strikes, my whole body swells and burns. In other words, adequate pain management is essential to avoid MCAS complications.

So pain pills seem like an easy answer, right? Wrong. Mast cells generally hate pain medication. I am one of the lucky few that can tolerate NSAIDs and some opioids. However, this week I wasn’t so lucky.

An ER doctor prescribed me a new narcotic to manage the kidney stone pain. I was both grateful and reluctant. I am always scared to take a new medication, but the only path to relief is trial and error. My reluctance was validated 24 hours after taking the first dose with a severe, two-day MCAS reaction.

My reactions to medications are distinct from other MCAS reactions. In addition to typical symptoms, a migraine with aura renders me bed bound for 1-2 days as the medication leaves my body. I take the maximize amount of Benadryl in order to keep food, fluids, and medication down.

So basically, I traded my pain for vertigo and vision loss. I think I prefer pain after realizing how heavily I rely on screens for comfort. Social media is a great source of support, but in this instance, it was also my enemy. I also tried blogging, but only managed a few desperate sentences before I vomited and proclaimed my life was over. The future seems bleak in an MCAS flare.

Despite knowledge and planning, I often feel like I can’t win at all with MCAS. Sometimes this disease is overwhelmingly unfair. But this too will pass, right? Like a 7mm, laser-blasted kidney stone, right?

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.

• 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.

• 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.