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!

 

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.

Operation Crazy Straw

I made the mistake of googling my procedure.

When you hear “stent,” what comes to mind?

Maybe a tiny coil, smaller than a thimble? Maybe a micro sized umbrella, like a cocktail decoration for a fairy garden?

Okay, so maybe I didn’t have a reasonable understanding of stents going into this, but I’m pretty sure my doctor didn’t elaborate on purpose.

Because Google revealed ureteral stents are over EIGHT INCHES LONG with curlicues at each end.

In other words, I was electing to have a crazy straw shoved all the way up my pee tube and into my kidney for FIVE DAYS.

I was equally worried about mast cell reactions to the surgery and stent. This was my first procedure since my mast cell disease diagnosis and I had no idea how I would react to some medications such as anesthesia.

However, I needed the procedure. My kidney stones were aggravating my mast cells. My kidney was constantly aching and the pain was spurring low grade fevers.

I shared all my fears with my surgeon. He listened to me, and agreed to follow the pre-op and emergency mast cell disease protocol. He tried to reassure me.

“I will leave a string, so if the stent become unbearable, you can always pull it out,” he said smiling. “Like a tampon!”

This is when I realized we would never quite be on the same page. I’m pretty sure ripping out my own eight-inch stent would be a ticket to the Anaphylaxis Express. I also questioned his familiarity with tampons. Again, I am not a medical professional, but there is a significant difference between a pee tube and a baby tunnel.

*****

My first sentence out of the operating room was, “Why did you wake me up? I was in Fiji.”

And then, “I need to pee.”

This is less curious when you realize I can only drink Fiji water.

The nurse assured me that I didn’t actually have to pee. They had drain my bladder with a catheter and I was feeling irritation from the procedure. After a quick assessment, I realized I felt quite good! My fever and kidney pain was gone! I proceeded to chat with everyone with the recovery room that was conscious. I have a suspicion that my mast cells loved the sedative.

My surgeon reported that he removed 5-10 stones, most of which were too big to pass! I basically had a quarry in my kidney!

Everyone told me the stent would be awful. They warned me that I would scream when I peed. So I emotionally prepared for death. Instead, I burst out of the bathroom, “I PEED! IT WAS FINE! I CAN DO THIS!”

The remainder of the day was awesome. For the first time in months, I had no pain. I bounced around my condo, confusing and concerning my caretaker. Thanks to prednisone, I bid her adieu at 10 pm and pulled all-night creative extravaganza. My poodle pulled a blanket over his head.

Unfortunately, the story doesn’t end here. After all, it’s a mast cell story. Part two… coming soon..

Coloring is hard, friendships are harder

“When can I come over?” she messaged me.

I panicked. Does she know I am boring, feeble, and can’t offer anything except Fiji water?

For months, I had been writing the saddest story of abandonment (starring ME) in my head. None of my friends had visited me since my diagnosis. Unable to leave my house, I wished for movie nights and home cooked meals. When wishing proved futile, I alluded to my chronic illness fantasies on Facebook to no avail.

What if we have nothing to talk about and she decides I’m a total loser? Do you know what’s worse than no friends? Rejection. I hope she forgets me entirely. 

“Wednesday?” she messaged me.

Either I would have to accept her offer or wither alone in my hypocrisy. I reminded myself that she used to work in home care, and therefore was professionally trained to deal with my awkwardness. “Okay,” I said.

She did not arrive alone. Behind her, she pulled a suitcase full of coloring books, pens, and markers. We spread them across the table and began coloring our respective pages. I don’t usually enjoy coloring, but I was thankful to have company and something to focus on other than my 43,295 allergies.

Over the next several months, she continued to visit and even gave me a poodle coloring book. I warmed up to these visits. Maybe a bit too much.

Damnit, I wrecked the best poodle in this book. I couldn’t have picked an uglier color. Now I’m going to burn the whole book. I growled with frustration and showed my friend.

“Well you don’t have to sell it!” she exclaimed. I was stunned by her frankness, and then I laughed. A true friend doesn’t sugar coat your ugly poodle.

I’m so grateful my belly button exploded

To clarify, I wasn’t so full of gratitude that it caused my belly button burst. Rather, my belly button exploded, and I am really glad it did.

Yes, it really exploded.

I was innocently typing on my laptop, when I felt an itch on my stomach. Assuming it was a mast cell induced rash, I lifted my shirt and pushed on my abdomen to survey my skin. Just as I noticed a strange bulge in my belly button, IT EXPLODED. “I’ve been shot!” I yelled, but my poodles did not flinch.

I wiped the blood off my forehead, and looked down again to find an inner innie oozing pus. I immediately recalled my recent umbilical hernia diagnosis, which no one explained to me. I thought, “Oh shit, my intestines are coming out my belly button! I’m going to die like they do on Game of Thrones!” One poodle yawned.

Finally, I calmed down and decided it was a small infection related to the belly piercing I had ten years ago. Likely, it wasn’t even mast cell related. How did an infection get under my skin that healed many years ago? I don’t know. I don’t really care. I have exploding body part fatigue.

The only thing that kept bothering me was my late grandpa’s warning, “You know what happens if you unscrew your belly button? Your butt falls off.” So, I decided maybe an antibiotic would be a good idea.

I try to avoid primary care like the plague. If I had the plague, I probably wouldn’t go to primary care. In my experience, primary care is a waste of time, because the doctors tend to ignore my concerns or send me to the ER. For years, I searched for a competent primary care doctor to manage my unique symptoms, but I scared all the smart ones. (The not so smart ones were just annoyed.)

But I went anyway, haunted by the image of my butt falling off. The doctor entered the room and I stated the facts “My belly button exploded. I’m concerned it may be infected and I may need antibiotics. Also, I have mast cell disease.”

She examined my belly and said, “Wow, it really did erupt. Do you have MCAS? I have a patient with MCAS. I’ve learned quite a bit.”

She listed her patient’s MCAS triggers, and I listed mine. I presented her with a list of MCAS friendly antibiotics and we picked one together. She also gave me a prescription for a topical antibiotic to try first in order to further avoid a MCAS reaction.

She let out a deep sigh and said, “I just feel so terrible for anyone dealing with MCAS. Can I keep this list?”

“Yes.” I squeaked like a high school boy asking a girl to prom, “Will you be my primary care doctor?”

They say you’ll find your perfect match when you least expect it. I never expected my belly button to explode, nor to be so grateful it happened. I never considered giving this doctor a second chance.

You see, I saw this same doctor two years ago. She listened and was smart, but she didn’t have the answers. She diagnosed me with fibromyalgia. I knew intuitively that something else was ravaging my body, but I couldn’t prove it, so I moved on to a new doctor. Two years ago, neither of us had heard of MCAS.

So today I’m feeling hopeful about my health, my diagnosis, and MCAS awareness. My belly button is healing and my mast cells are behaving. And now I have a primary doctor in case my butt falls off.

Third grade Valentine’s Day lessons

My best Valentine’s Day memories are not romantic. In fact, my fondest memory was the result of a lot of puke. In third grade, I woke up with the flu on Valentine’s Day. I tried to get ready for school anyway, determined to pass out the valentines I painstakingly crafted the night before, but I vomit-blasted the hallway with such ferocity that I quickly retreated back to bed. All day, I lay in bed, brokenhearted and feverish, with only an empty bucket to console me. (Okay, I’m pretty sure my mom was around too, but we remember what we feel, even if it is a little dramatic.) My valentine mailbox, a shoebox covered in construction paper, sat empty on my dresser.

That day I learned:

  • How to control vomit
  • Sometimes illness forces you to stay home, no matter what day it is
  • Valentine’s Day sucks when you’re all alone

Then, at 3:30, the doorbell rang. I heard my mom invite the visitor inside. A few seconds later, my bedroom door opened. My third grade teacher entered the room.

“AHHHHH, she in my house!” I thought, sitting in my pajamas, but feeling completely naked. “She is breaking the rules! How did she find me?”

“I brought you this,” she said, handing me a shoebox covered with red and pink hearts. “I hope you feel better soon.”

After she left and I recovered from the realization that teachers can leave school, I opened the box. Inside were 22 handcrafted valentines from my classmates, and one from my teacher.

I wish you a healthy Valentine’s Day, full of thoughtful surprises. And if that’s not possible, please don’t wait for your third grade teacher to show up at your door. Sometimes self-care is the best valentine of all.

Spoonies are all around us

I signed up for a blog conference without considering how I’d actually attend. My challenges began with registration. Was my lunch preference vegetarian, vegan, gluten free, or no special dietary needs? I totally would have sent a snotty gram to the event organizers about food allergy awareness, but my dietary needs are hard for even me to understand (low histamine, low FODMAP WITH gluten – don’t you dare deny me a donut). When your list of allergies includes most brands of water, seeking accommodations often seems unrealistic.

I showed up not knowing how I would survive the first session, let alone the whole day. Conferences are high energy networking opportunities. I don’t have much energy and I’m allergic to people. One person’s perfume can send me to the ER. So I snuck into the back of the auditorium and sat among the guys. Pro-tip: men tend to be less fragrant. Unless you mean body odor. But I’m not allergic to body odor because this disease is cruel and ironic.

By the second session, I was feeling a little more confident. I had decided my disheveled appearance was actually “on brand” for my blog. I started thinking, “Maybe I can do this people thing!” Then a guy sat down next to me and fear swept in. I thought, “Maybe I don’t want to do this people thing!”

Of course, he said hi. I replied with a convincing smile, because my Minnesota Nice upbringing overrides my social anxiety. “What do you blog about?” he asked.

You don’t want to know, beauty and fashion, and my dog were responses I considered. Up until this point, I had fooled everyone into thinking I’m was a functional human. But I figured I might as well be honest, since chances were high I’d be leaving this conference by ambulance anyway.

“I have a rare disease that causes me to be allergic to most things. So I write about chronic illness and disability. I am trying spread awareness and help others with mast cell disease,” I said.

“That’s cool. I have Crohn’s disease,” he replied.

“I’ve had two colonoscopies!” I blurted out. Yes, I said that. “I mean that was one of my misdiagnoses – ulcerative colitis, actually. I have a bunch of mast cells in my intestine. My doctor didn’t know what was going on, and I actually had to have butt surgery.”

Protip: Do not affectionately call your past procedure butt surgery, even if it is anatomically accurate. Especially around people you’ve just met. Even if they have Crohn’s disease.

But I was still convinced humor could save me. “They screwed up my first colonoscopy, so they gave me a two for one deal on the second,” I joked. He stared without the slightest detection of sarcasm. “I mean, not really. My deductible was met.”

In that moment, I realized I am still learning how to convey empathy. I desperately wanted to express my understanding. That I had undergone all of the procedures that inflammatory bowel disease patients endure. That I spent countless hours in the bathroom telling myself poop jokes to soothe the excruciating pain. That I felt a rare connection, and that I was grateful because I knew he understood a part of my experience too.

After my torrential overshare, he told me that Crohn’s had forced him to get a colostomy. I’d like to think my candidness encouraged him to share this. I wholeheartedly listened to him tell his story of recovery and remission. Someday, I hope to tell my story with as much grace.

With that bit of inspiration, I survived the whole conference, aside from resting at home over lunch. The day ended with a professional audit of my blog. Again, my confidence wavered. My blog was not the caliber of the other blogs. I didn’t want to embarrass myself or waste anyone’s time.

I began trivializing my blog as soon as I sat down with the auditor, which launched into another anxious soliloquy about my inexplicable disease. At least it was the end of the conference and I knew I could flee from the embarrassment. To my surprise, she said, “I think your blog is great. It is well designed and the content is engaging. My daughter has fought leukemia twice and I know how important the blogging community is for people suffering from medical issues.”

She completely understood my audience, commended my goals, and offered valuable advice. There were tears in my eyes. (Thank goodness did not share that I too see a hematologist and know all about bone marrow biopsies. Blood is way less funny than poop.) I left the conference without a better understanding of SEO, plugins, or analytics. Instead, I left full of inspiration and a sense of belonging. Spoonies are all around us, despite the challenges, quietly listening with stories of their own.

P.S. Are you still confused what spoonie means? Read “The Spoon Theory” by Christine Miserandino.

P.P.S. Thank you to Allie, Ann, and Ashley for supporting my blog. Wow, people with “A” names are super generous. (Just kidding, you non-A-named people who helped me in other ways this month even though I resisted it because I’m still learning to accept help and warm fuzzies.) If you too would like to overwhelm me with feelings of loving gratitude, or if you find sadistic amusement in my attempts to survive a world I’m allergic to, please consider supporting my blog.