My outrageous wishlist somewhat relating to mast cell disease

Because “dreams are the touchstones of our character,” here is my outrageous wishlist (I had to limit myself, obviously):

  • A canine SWAT team to clear a room for airborne allergens and snarl at anyone wearing perfume
  • Smart boards to cover my bathroom walls, because I’m a genius in the shower and bored on the pooper
  • A climate controlled wardrobe that keeps my body at the same temperature all the day
  • A private performance from the Spice Girls (absolutely nothing to do with MCAS)

What’s on your outrageous wishlist?

 

So this is how the Grinch felt

Every year, I receive a free Christmas tree from my realtor. I have always been allergic to evergreens, so I place them on my patio and wrap them in lights. To me, the trees twinkle more beautifully under a fresh layer of snow.


This year, between an allergy to the cold, an allergy to the tree, and tendency to dislocate my joints, I accepted I would need help. I am always reluctant to ask for help, and rarely do, but I thought the tree might lift my spirits and distract me from pain as I rest on the couch every night. So I asked four of my closest friends and family for help. Four people should be enough to deliver and set up a Christmas tree, right?

This is what I got.


A giant pipe cleaner.

You see, one of my “helpers” threw the tree on my patio, but did not set it up. So the tree lay bound and freezing on my patio. For a week. Until the next “helper” set it in the stand, shrugged their shoulders, and left.

Heart pounding with anger, I stared at the tree. “Put it in your condo to thaw,” the “helpers” said. I can’t. Another insult to injury. I’m allergic. That’s the point. Never mind, the bag of lights sitting untouched by the door. I forced myself to sleep to stop the angry ruminations.

I woke up at 5 am, enjoying 3 treeless minutes, before I open patio blinds to let the dogs out. There lay the tree, impossibly more pitiful than before.


Adrenaline surged as the last year of disappointments spun in my head – holidays spent alone, nights without dinner, and weeks without calls or texts. For months, I had ignored the pain of inadequate support, but here was a visual reminder, demanding to be seen, indisputably pathetic.

Maybe this time was different, because my adrenals are finally recovering after a year of prednisone. Maybe I’ve moved on from the first stage of grief to anger. What I know for sure is I had enough adrenaline to shove the tree over a four-foot patio wall and drag it half a block. (Of course, I put on protective gloves first.)

My intention was to throw it in a dumpster, treestand and all, never to be seen again, but my rage ran out quicker than I expected. So I dropped the tree and scurried away in the darkness of the early morning. I spent the rest of the day nursing a dislocated disc in my back.

For several days, I cautiously spied on the abandoned tree, fearful someone would connect my interest with ownership. I was certain someone would adopt it, but no one did. I began to feel guilty. The tree was just a victim of heartless humans. What if I was the tree?

And then it snowed. Five inches that would inevitably last until spring. The tree was dead and buried. Or so I thought.

Three days later, driving home and caroling along with the radio, I screamed and stomped on the brakes.


It was back. From the dead. My zombie Christmas tree.

It snowed other five inches, cementing the treestand in snow for the coming months. Oh Christmas tree, oh Christmas tree…

Gift guide for mast cell disease

Like many people with chronic illness, my life is shaped by fatigue, pain, and mobility issues. However, mast cell “allergies” or triggers present unique challenges with life threatening consequences. As a result, most people are downright scared to give me a gift.

Well, technically everyone. On my birthday this year. I’m not still bitter.

So here is my gift guide for people with mast cell disease. Because I think we deserve gifts!

Practical gifts

  • Delivery services

Such as an Amazon Prime membership or Instacart membership. Leaving the house is difficult for people with mast cell disease. Delivery services allow us to avoid a myriad of triggers, while getting what we need.

  • Air filter

The most expensive item on my wishlist is an Austin Air Filter. I have one in my enclosed office at work, creating a safe space  for me to breathe.

  • Vogmask

I always carry a Vogmask in my purse to filter out chemicals, smoke, and pollen. It’s a little embarrassing to wear in public, but Vogmask has a variety of fun designs. It’s great to have more than one to match your outfit!

Self-care gifts

  • Epsom salt

Epsom salt baths are not only relaxing, but they can soothe muscles and reduce swelling. Most people with mast cell disease can tolerate pure Epsom salt (no added ingredients), although we need to be careful with water temperature (not too hot).

  • Vanicream

Winter is coming and every year it destroys my sensitive skin. Vanicream was developed at the Mayo Clinic, and is my personal favorite moisturizer.

  • Books, music, and movies

These gifts help us pass the time, escape our realities, and sometimes find inspiration. E-book readers are good for people who are sensitive to book smells or have trouble holding books.

Gifts of love and support

  • Cards with handwritten notes

Sometimes it’s easier to write the touchy feely stuff than say it aloud. I cherish cards much more having been through tough experiences with mast cell disease.

  • Homemade gifts

Particularly those we can admire from our couch or bed, where we spend most of our time. Consider incorporating our favorite colors, or quotes.

  • A framed photo or art piece

Remind us what we are fighting for! Beauty, inspiration, nostalgia.

Bonus gifts

  • Toys for pets

Most spoonies I know have pets that are incredible companions. We find joy in making our pets happy.

The no-no list:

  • Anything that smells
  • Anything containing health advice
  • Plants
  • Food
  • Clothes, beauty products, or jewelry
  • Gift cards to stores we cannot enter due to allergies or mobility issues. If you’re going to give a gift to an online store, please consider the shipping fee.

There are exceptions if you’re willing to also give your time and energy. For example:

  • Buy a few clothing items for the recipient to choose from and offer to return/exchange what doesn’t work. Soft, loose clothing is best.
  • Restock their favorite products. Take the time to find out exactly what they enjoy most.
  • Fulfill a specific request.

Whatever you do, don’t make us feel guilty if your gift makes us sick. Sometimes our triggers change and we are surprised as you are. Thoughtfulness, flexibility, and communication goes a long way with mast cell disease.

Please note, this is a general guide. Not everyone with mast cell disease will benefit from all of these gifts. Our triggers vary by individual.

So I am curious to know–what is on your wish list?

P.S. I am not sponsored buy any of the brands listed. Or anyone really. I certainly would like to be, if it doesn’t require selling my soul.