I deserve all the gifts

HOLIDAY PUBLIC SERVICE ANNOUNCEMENT:

Do not use my illness as an excuse to not give me a gift!

In the first year of my diagnosis, holidays were sad and lonely. On my birthday, I received only one card and no visitors. I couldn’t figure out why everyone would let me down on the hardest year of my life. “I don’t want to make you sick,” they said. “I don’t know what you’re not allergic to.”

I cried and accepted my fate. My disease was too complicated to understand. Gifts were just another casualty of my illness.

…until this year, when I created a new support system of compassionate and somewhat quirky friends (more on that later (you can do this too!))…

…and they gave me ALL THE GIFTS.

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The smorgasbord I received after surgery this year

This year, my friends lavished me with mast cell friendly gifts: Fiji water, Vanicream, books, homemade food, and even dog poop bags! I literally broke out in hives at their generosity (and that’s okay!). They cared enough to get to know me and the challenges I face each day. They taught me I am deserving not only of gifts, but loving friends.

Now I know we can’t all be as generous as my friends. But truly anyone can give and receive a gift. Some of my most cherished gifts are handmade cards telling me I’m a badass. A little thoughtfulness goes a long way and when in doubt, just ask! It’s really that simple.

In case you missed it last year, check out my gift guide for mast cell disease.

Happy gifting!

P.S. I’ve created a store for my blog! Check out these great mast cell gift ideas. All proceeds go towards my blogging costs – thank you for your support!

 

When mast cells commit the perfect crime

A new pain became the center of my universe last week. Well, it’s not really new, but I avoided telling you about it, hoping it would go away. I haven’t been able to sleep on my right side for weeks. I ignored it until last Monday when I threw up in my office and burst into tears in front of my boss.

That’s when I decided to go to the ER. I worried my gallbladder was about to rupture, but all of my labs and imaging were normal. At first I declined pain medication, but my pain became all consuming. Every time Twinkle Twinkle Little Star announced the birth of a baby on the hospital intercom, I could only think of pain. “Another ripped vagina,” I thought.

On Wednesday, I was injected was radioactive material to check the functioning of my gallbladder. For two hours, I lay strapped to the scanning bed as my right side stung and throbbed. The radiologist informed me the results were normal. I cried the whole way home, aching and hopeless.

As I pulled into my condo’s driveway, I noticed a woman walking a small, white dog. Its tail bobbed with each springy step. I wiped my tears and smiled for a brief moment, distracted by the dog’s contentment.

As I drove closer, I realized it was my dog. I forgot my neighbor had offered to walk my dog.

On Thursday, I met with a surgeon about removing my apparently healthy gallbladder. We both agreed my mast cells are likely to blame, but there is no evidence. My mast cells are committing another perfect crime. It’s possible gallbladder removal could relieve my pain, but there’s no way to know for sure. Meanwhile, I am losing my sanity (and weight).

I don’t know what I am going to do. Today, the pain is shooting up my back and into my jaw. The holiday season is compounding my hopelessness. Right now, my only consoling thought is imagining giving my gallbladder at my office’s white elephant gift exchange. Luckily for my coworkers, my gallbladder (if removed) will need to sent to pathology. Bah humbug.

The Hellness Assessment

Every November, I feel compelled to smash my computer and light the room on fire while completing my employer’s wellness assessment. The supposed purpose of the assessment is “to support your overall health and wellbeing”. In actuality, it raises my blood pressure and triggers hives and emotional instability. Nonetheless, I submit myself to its faceless insults in order to save $500 on my health insurance premium each year.

The assessment’s 50+ questions remind me that every aspect of my health sucks. As if I’ve forgotten. The “right answers” are obvious, but I am committed to living my authentic life and answer with unabashed honesty. Here’s an example:

Pain assessment

The assessment should have ended right there. They should have sent me a gift basket and left me alone.

But it continued:

  • Have you had a flu vaccine in the past year?
  • How much rigorous activity do you do in a week?
  • Do you eat high fiber foods?

I do not do any of these things, because they tend to send me to the ER. If the goal of this assessment is to lower my health costs, then I should be congratulated for not doing these things. Instead, the assessment ridicules me. “Eating healthy is like medicine – and you may want to try some of that medicine. Work more fruits, veggies, and whole grains into your diet to refuel your body and brain.” As if I shoved two colonoscopy tubes up my butt without trying eating healthy first? I bet these are the same people that think beans are a magical fruit.

At the end, the assessment tells me I am “going in the right direction” while simultaneously displaying a chart that shows I am “well below average”. Well, thank you for reminding me I’m merely surviving. My list of weaknesses includes nutrition, physical activity, pain and stress. Do you know what would lower my stress? Eliminating this damn assessment.

Finally, the assessment recommends a list of activities, or in my case, ways to die. At first, I was encouraged that this year’s assessment included a box to indicate a disability that limits physical activity. However, apparently it had no bearing on my results and the recommendations included biking to work every day.

There are two recommended activities that don’t threaten my physical health. However, one of them almost crushed my mental health: coaching from a certified nurse. Last year, I signed up for phone coaching with the hope of venting my frustration and holding someone accountable. On the first phone call, the nurse related what she learned about mast cell disease on Google. On the second phone call, she suggested more activities and I explained how each one would kill me. On the third phone call, she recommended I keep reading library books for pleasure and wished me luck. That was three hours of napping potential that I can never get back.

The other activity recommended by the wellness assessment, the one activity I am able and willing to do, is write an advance care directive. As if I wasn’t in a foul mood already.

Listen here, wellness assessment people:

I am enough despite your ableist assessment. Do not compare me to other people. Do not waste my time with your insulting questions and recommendations, while I fight bigger battles like ADA accommodations and access to medical care. I see more than a dozen doctors a year; it’s best to let the specialists make recommendations. I am a fabulous medical unicorn. I deserve infinite gold stars. And a gift basket.

In the Hall of the Mast Cell Queen

A narrow path of light gleams on the red marble tile, inviting me into the hall. I pass seven pairs of large, oak doors guarding both sides of the corridor. At the 15th door, I look over my shoulder. The hall is silent except for my steady breath. I unlock the door, enter the room, and wait for the click of the latch behind me.

The room is small and plain: white walls, dark carpet, and no windows. A desk consumes the majority of the space. They say I will be safe in here, but they don’t fully understand. I set to work anyway. Work is my reprieve these days. When I can focus, I can forget my loneliness, and my curse.

At first, I had hoped I just needed more sleep. When that didn’t help, I tried positive self-talk, but my heart pounded so furiously I could no longer hear my thoughts. Anxiety, the doctors suggested at first. However, the more I shared, the more uneasy the doctors became. They told me they could not help me. They did not believe me. I knew better than to tell them everything.

Shadows pass along the ½ inch gap between the red marble tile and the large, oak door. I am not alone in the building anymore. I wonder if I should seal the gap to protect myself. They don’t mean to harm me, I am told, but I know they will if let them get too close.

Before the curse, I walked the building freely at all hours, unaware of the dangers floating through the hall. Perhaps, if someone had warned me, I could have avoided it. Perhaps, someone did warn me, and I didn’t believe them.

Another shadow glides along the gap and stops. Three raps against the oak door jolt me out of my chair. There’s no way to know what is waiting for me on the other side, but I must answer. I slowly open the door a few inches and peer into the corridor. A familiar face, a safe one, smiles and asks, “How are you?”

As I push the door further open to invite my visitor in, a draft cuts into my room. At first it is sweet, like a rose, but then it burns as tunnels down my throat. I back away, but it wraps around me like a snake, crushing my chest. With every gasp for fresh air, the poison travels deeper into body.

The smiling face, unaware of the danger lurking behind them, notices my alarm. Clutching my throat, I declare my curse, “I smell living people.”

Happy Halloween!

More mast cell grievances from Minnesota

My kidney still hurts. Removing the stones relieved the severe pain, but my mast cells are still spiteful from the surgery. I asked my urologist if I could try a mast cell stabilizer that targets the urinary tract. My hypothesis is it would decrease my kidney and ureter inflammation and consequently, I would collect less stones. My urologist said he hasn’t read any research supporting my claims.

Of course not. I taught him almost everything he knows about MCAS. Furthermore, I AM THE RESEARCH. Literally, I am a MCAS research participant. Am I supposed to jeopardize my body while I wait years for research to be published?

He asked me if anyone was managing my MCAS, which is the Minnesota way of telling me to seek help elsewhere. No, no one wants to manage my MCAS since my specialist left the state.

And then my urologist told me to piss off.

Okay, he actually told me to complete a 24-hour urine analysis. Another repeat test, another waste of time.

My desperation compounded when I learned Selena Gomez got a kidney transplant. If Selena, a multi-platinum singer, can’t save her kidney, I fear mine is also doomed.

Additionally, Selena’s friend gave her the kidney. I don’t even know how to ask my friends to bring me dinner. So doomed.

Find a new doctor, one might suggest. Unfortunately, the MCAS situation in Minnesota has gotten worse. As you may recall, the university stopped treating MCAS patients after my specialist left. The university recommended three doctors in other networks. Since then, all three doctors have closed their doors to mast cell patients. That sounds horrendous until you hear Mayo Clinic also refuses to see new MCAS patients. Apparently, Mayo Clinic is currently considering if they will see legitimate MCAS patients. Whatever that means.

Yesterday, I received a $500 hospital bill and a letter from the university, which will no longer treat me, requesting a donation to support its medical research. It’s a miracle I did not spontaneously combust.

Hospitals make me sick

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.

*****

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.

My mast cells put me in the hospital

“I’m scared and alone and I need you to tell me everything will be okay,” I texted my best friend.

Thirty minutes ago, I was insisting to be admitted. After two rounds of mast cell induced ureteral obstruction, I refused to experience the worst pain of my life again. Pills weren’t enough; I needed continuous IV medications, I told the ER doctor. So they admitted me to the neurology floor.

But maybe this was a bad idea? I looked down at my IV and then the door. I can outrun them, right?

I had been admitted to the hospital once before. Similarly, it was midnight, I was alone, and my ureter was obstructed (that time by a 6mm kidney stone). In fact, I was in another state attending a work conference. My mom offered to fly down, but I declined. I found solace in the quiet room.

So why was I terrified of hospitalization this time?

Because this time I knew I had mast cell disease. This time, I knew my doctors would not know how to help me. This time, I needed to educate and convince my care team to listen to me. This time, I knew any treatment was a gamble.

The admission process made me feel like a criminal entering jail. The hallways were empty and the rooms were dark. The head nurse searched my belongings and confiscated my pill bottles. I pleaded to keep my medications, explaining I had to use specific manufacturers or else I risked another reaction. Why do they need to lock up my antihistamines? If they don’t trust me with my own medications, how will they trust me about treating my disease? I began to cry. The nurse promised to deliver my morning doses on time.

Next came the doctor, a neurologist. He asked me what pain medications I could tolerate. I replied oxycodone and fentanyl. He told me they don’t administer fentanyl on the 7th floor. He suggested morphine and I began to hyperventilate. Why am I on this floor if they can’t give me the medication I might need?! I told him morphine will kill me and fentanyl is the only medication for extreme pain that I am sure is safe. I had tried other pain medications that week and lost my vision for two days. In the ER, two doses of fentanyl only reduced my pain to level 8 on the pain scale.

The doctor agreed to continuous IV Benadryl and oxycodone (luckily my pain was more manageable at this point). The nurse left the room and my friend who brought me to the ER said goodbye. I looked out the window to regain my bearings, but my city was unrecognizable in the darkness, and began to lose my shit.

You should know, mast cell reactions also can induce a sense of doom. The doom fogs all logic and invites fear to fill every thought. This chorus of fears echoed in my head:

  • I am going to die.
  • They are going to deny me my medicine and I am going to suffer. And then I am going to die.
  • I am going survive, but my hospital bills will be unsurmountable and I will lose my home. I will be homeless. And then I will die.
  • I am never going to have children and I am going to die alone even if it takes me awhile to die.
  • I am never going to feel joy again.

The nurse returned and asked me if I needed anything.

“I’m scared,” I squeaked.

The nurse walked over to my bedside and I began babbling how scary mast cell disease can be. She said she had never heard of MCAS, so I explained my triggers and daily challenges. The nurse listened patiently for over fifteen minutes and I felt better.

As she left the room, she said, “I won’t put the bed alarm on.” Way to ruin a moment.

I didn’t sleep at all. Pain medicine and Benadryl give me insomnia. I took black and white selfies of my tear-stained face and wrote lines for a melodrama I creatively titled “Girl in the Hospital.”

My anxiety subsided as the sun rose. I hadn’t had a reaction. I didn’t need Fentanyl. I hadn’t ripped out my IV and ran. I survived my night in my hospital with mast cell disease.