Why I made an encouragement board instead of a vision board

Every January, I make a vision board. To be honest, I enjoy the craft portion of the project most. A vision board is basically a pretentious collage that makes me sound like I have my shit together. It’s supposed to convey your dreams and leverage the law of attraction to make them happen. Yet, I never put a hospital on my vision board, but I can’t seem to stay out of one.

This year I am forgoing the traditional vision board for three reasons:

1. I am overly ambitious; my body is not

Before vision boards, I wrote resolutions. For example, here are my New Year’s resolutions from when I was 15 years old:

  • No chocolate except for special occasions
  • Find a volunteer job
  • Fix my many social problems or just shut up when necessary
  • Save $150 a month
  • Journal 3 times a week
  • Keep my face clear
  • Do all the other stuff I can’t think of right now

Well, that pretty much covers it. I was not a cool 15-year-old and I did not get more reasonable about my goals with age. I still eat chocolate every day and my face is usually dotted with hives. Let’s not even discuss the social problems. For the record, I did get the volunteer job… AT A HOSPITAL. These days I’m lucky if I can even keep my paying job. Vision boards and resolutions alike are loaded with guilt and regret.

2. The universe misinterprets my visions

In case you missed it, read last year’s warning about vision boards.

3. My friend refused to participate in our vision board tradition this year

Technically, we’ve only made them together once, but since my mast cells forbid all of my other traditions, it’s officially our thing. Maybe she refused this year because last year she was a little too scissor-happy with the yoga magazines and now feels guilty. Or maybe it’s because when we craft, I try to work “modge podge” and “she shed” into the conversation every 10 minutes, because I think it’s hilarious. She reminds me it’s actually called “mod podge” and I become more persistent. MODGE PODGE.

*****

This year, I decided I am making an encouragement board instead. Yes, that does sound even more nauseating than a vision board. Yes, a unvision board would be way more fun to make. (A unvision board is a collage of things you wish you could unsee. Yes, I totally made that up.) But after another year of pursuing the same dreams, getting knocked down and beat up, and feeling totally out of control, I need an encouragement board.

This past year, my friends and readers have kept me going. When I was in the hospital, your encouragement gave me strength to keep fighting and hope that I would recover. Oftentimes, I didn’t feel like writing, but the messages of support reminded me my writing helps people laugh and feel less alone. I dug up these messages time and time again when I felt low. Finally, it occurred to me to print these messages and make a collage.

Here’s what else my encouragement board entails:

  • A 11”x14” foam board
  • Scrapbook paper for the background
  • Inspirational quotes
  • Magazine clippings
  • MODGE PODGE (use doubled sided tape if you react)

Chances are you don’t have a blog and dozens of comments feeding your ego. However, I bet if you shared your dreams on social media, you’d also receive encouragement. Maybe from people you didn’t expect. And you can always print this out:

I BELIEVE IN YOU! YOU ARE AWESOME! – Hell’s Bells and Mast Cells

Why I only write when I feel like it

“Write every day” is common advice pounded into aspiring writers’ heads. If not every day, writers are encouraged to schedule writing time and stick to weekly routines. The purpose is to train your creative brain to produce a steady stream of writing regardless of inspiration.

I love routines. My perfect morning starts with making my bed, a chai latte, and breakfast for my poodles followed by twenty minutes of reading and a leisurely shower. I love how routines minimize decision making and ensure I focus on my priorities.

However, a routine is a luxury not everyone can sustain. My body is unreliable. My health changes from hour to hour without warning. It does not abide by any clock or calendar, no matter how hard I try to bribe it. As a disabled and chronically ill person, I have given up on routines.

When I first got sick, I thought if I followed a strict routine, I would feel better. I created a conservative schedule of medications, healthy meals, exercise, and sleep. I tried to follow it every day and every day I failed. My routine was destroyed by bouts of dizziness, midday vomiting, and nighttime muscle spasms. Instead of feeling better, I felt worse as I clung to my schedule and ignored my body’s demands.

Five minutes of writing a day may seem like an easy commitment (I have tried it!), but some days I can barely walk or shower. Some days I must choose between eating and resting. Some days brain fog robs me of my words. On a bad day, I don’t need the added disappointment and guilt of a writing routine I can’t maintain.

I am not less of a writer, because I can’t write every day. In fact, my experience with chronic illness and disability enriches my writing. Furthermore, I love writing and doing what I love, at my own pace, is healing. In the end, writing when I feel like it helps me feel like writing much more often.

4 tips for writers with chronic illness (and everyone else)

1.  Set realistic, meaningful goals
I have less energy than most people, so I must choose my goals carefully. A near death experience incited my desire to launch blog. I cannot blog every day or every week, but I strive to post every two weeks. I remind myself that the quality of my posts matters more to me than the quantity. I also decided not to monetize my blog in order to save my energy for writing.

2. Write when you feel good, wherever that may be
Inspiration is extremely elusive when you feel like crap most of the time, so I make every effort to capture it. I’ve trained myself to jot every idea into my phone no matter what I’m doing. I dictated half of this blog post into my phone while sitting in traffic. Notes and outlines help me write when I feel good, but I’m not inspired. I always bring these with me to my medical appointments, where I spend a lot of time waiting.

3. Enjoy less taxing, creative activities when you don’t feel good
I’ve learned how to enjoy myself when my brain feels like mush. Podcasts, books, movies, and coloring are low-energy activities that can be great distractions, while stimulating creativity. You totally have my permission to binge on Netflix. I also recommend networking with other writers on social media. Networking can be as simple as liking someone’s posts and sending goofy memes. The chronic illness and disabled writing communities are awesome.

4. Be kind to yourself
Your body is not the enemy. When I’m unable to meet my goals due to my health, I acknowledge that I’ve been busy trying to stay alive. There is no writing pace that guarantees success, but you do need be alive in order to write. Fighting your own body and criticizing your limitations is not productive. Self-care will make you a better writer.

I did a thing

Do you ever get a strong urge to go somewhere or do something totally out of the ordinary? There’s no apparent explanation for it, but you MUST do the thing.

As soon as the snow melted, I NEEDED to go canoeing. I NEEDED to leave the city and paddle down a river lined with tall, green trees.

Maybe it was an instinctual calling after months of hibernation and mountains of snow? Or maybe it was my body craving a physical challenge as it slowly regained strength? Maybe it was just an excuse to put my dogs in their adorable life vests?

This urge contradicted every precaution I’ve taken every day for the past three years. I imagined how many ways canoeing could go wrong:

  • The sun could trigger anaphylaxis and I would need an emergency airlift. The helicopter pilot would find me by following the trail of vomit floating down the river.
  • My arms could dislocate or lose all muscle strength. I would lose control of canoe and end up floating into the Mississippi River. Maybe the Gulf of Mexico.
  • A bee or a swarm of mosquitos could attack me and trigger anaphylaxis. Another river of vomit; another airlift.
  • I might fall in, have trouble breathing, and depend on my two toy poodles to swim me to shore. Except they are toy poodles, so obviously we’d end up in the Gulf of Mexico.
  • Everything could go well, but I might lose all energy right before I needed to drive back to the city. I have no idea how much that Uber would cost.

I did not feel confident.

The urge continued to nag, “You really need to update your Facebook photos. Think of how cute your poodles will look!”

So, I texted a friend, “Do you want to go canoeing?”

I waited for her to tell me it’s a horrible idea.

“Sure,” she said, because I have supportive friends that let me test my horrible ideas.

So, I picked a 4-foot-deep river and a cloudy day.

Perched on the bow, I felt a bit more confident, like an explorer, brandishing my paddle. I only dropped it once. The river, aside from a few mild rapids, gently guided us down stream. Basically, we floated the whole two hours. Our only real job was not to make any sudden movements and tip the boat.

My only source of anxiety during the trip was when one of my poodles tried to fight a bald eagle. Quixote, who is 9 pounds and cowers at geese, had no reservations about barking and lunging at a bald eagle swooping increasingly closer to our boat. I imagine the eagle was ultimately dissuaded by his blaze orange life vest, completely validating the hour I spent digging the vest out of storage.

When we reached the landing, I leaped out of the boat and dragged it onto the shore declaring my victory. I was alive. I did the thing. My friend congratulated me on an uneventful voyage, but only I could truly appreciate what I had achieved. I knew my accomplishment could be attributed to luck (the weather was absolutely perfect) as much as determination (months of painful rehabilitation). But most importantly, it was about conquering fear.

And my Facebook photos got so many likes.

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Summer essentials for MCAS and EDS warriors

Minnesotans have a deep appreciation of summer. It is the reward for surviving blizzards and subzero mornings. As soon as the trees begin to bloom, we magnetize to our celebrated lakes for barbeques, swimming, and boating.

Too bad my mast cells hate summer.

Specifically, my mast cells hate the sun, the heat, and humidity. Fifteen minutes in the sun can trigger six hours of fever and vomiting. My mast cells hate the winter too, but that was easier to accept. The only fun aspect of living like a vampire is being able to say you live like a vampire. And to be honest, that hasn’t made me many friends.

This summer, overall my health is more stable, but my joints are not. It seems now that I’m less inflammed, my hypermobility is more noticeable. Like many MCAS patients, I also struggle with Ehlers-Danlos Syndrome (EDS). My mast cells are tolerating a more active lifestyle, but now my joints, especially my ribs, are slipping all over.

This year, I am determined to enjoy my summer anyway, even if that means getting up before sunrise. I’ve even assembled a survival kit of sorts. Here are the top five essentials I rely on to enjoy summer despite MCAS and EDS:

A cute hat

Emphasis on cute, because you should love your hat enough to wear it at all times. I have a huge head, so I’m a fan of straw, bucket hats, but UV protection hats are best. I am also a big fan of having multiple cute hats.

A fanny pack

Fanny packs are back! This is great for two reasons. First, they are perfect for carrying Epi Pens. I no longer fear a severe reaction when I walk my dogs, but I know one pissed off bee could put me in instant danger. Second, fanny packs easier to carry than most bags, meaning less joint problems . I’ve been eyeing this Lululemon bag.

Birkenstock insoles

Everyone has heard of Birkenstocks, but people rarely know about Birkenstock’s insoles. I actually find the insoles more comfortable. They provide both arch and metatarsal support and slide easily into any shoes. I can’t imagine my walks around lakes without them!

Zero gravity chair

When I asked other EDS warriors about patio furniture, the response was unanimous. I got mine from Target and it’s amazing. When my friend tried it, I worried she’d never leave. Perfect for outdoor reading, recovering, or wasting time on Facebook.

Signature (non-alcoholic) cocktail

Okay, it’s not really a cocktail at all, but this summer I’m observing happy hour. Every afternoon, when I slurpy my icy, mast cell stabilizing drink, I feel more summery. Your drink can be whatever you want. Here’s what’s in mine:

  • ½ cup frozen blueberries
  • ¼ cup raspberries
  • ¼ cup pomegranate juice (mast cell stabilizer)
  • ¼ cup lactose free Organic Valley 2% milk (easy to substitute)

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Wishing you an enjoyable summer! What’s your favorite summer essential?

I’m allergic to my own hormones

“Are you in pain today?” the nurse asks looking up from the computer screen.

“A four,” I say, anticipating her request to “rate the pain on a scale of 1-10”.

She reads the next question, “Do you feel safe at home?

“Well, I live alone with my poodles, so yes… except when one of them farts and I think I’m going to die of asphyxiation.” I laugh at my own joke. The nurse does not. Had she heard that one before?

The nurse continues, “When was the last day of your first period?”

“2013,” I grin. This time I’m not joking.

“Are you on some kind of treatment?” the nurse asks.

I consider telling her I have a five-year-old fetus growing inside of me, but I’m too tired to explain what humor is. The truth is hard enough to believe anyway. “Yes. I’m allergic to my periods.”

She takes my blood pressure and then flees the room.

*****

Five years ago, I didn’t believe anyone could be allergic to their own hormones. How can you be allergic to yourself? Doesn’t an allergic reaction entail hives and sneezing? I did, however, understand that hormone fluctuations could ruin a woman’s life. With the help of the internet, I realized I was experiencing premenstrual dysphoric disorder (PMDD).

PMDD was my most severe mast cell activation symptom from age 15 (when I got my first period) to age 27 (when I started taking continuous hormone pills). In fact, aside from my reactions to hormones, I felt healthy. Like MCAS, at that time, PMDD was relatively unheard of and provoked a lot of skepticism. No lab test can diagnose PMDD. Women with PMDD have the same levels of hormones as women without PMDD.

I wish I had a heartwarmingly funny way of describing PMDD to you, but the truth is it is living hell. Imagine a panic attack that lasts several days every month. Imagine being overwhelmed by impending doom, even though nothing has happened. Thoughts of hopelessness and paranoia cloud your mind, as your body becomes heavy and exhausted from crying. Your mind suggests death as a better option, while you try to pretend you’re okay for your job and your relationships.

For twelve years, I sought relief from this torture. I tried antidepressants, therapy, and supplements. Finally, a compassionate midwife worked with me to find a hormone pill that my body tolerated continuously. I learned no hormone fluctuations equaled no PMDD. The curse was over.

When I met my mast cell specialist several years later, he asked me to list my medical history. I told him that I was on continuous hormones for PMDD.

“Premenstrual dysphoric disorder,” I explained. He nodded, knowingly. His familiarity was curious, so I added, “I attempted suicide a couple times.”

He nodded again, completely unfazed. Had he heard me correctly?

Soon after, I learned that hormones can trigger mast cell reactions and many women with MCAS use medication to suppress hormone fluctuations. I learned doom is a hallmark sign of a severe allergic reaction. These days, when I’m anxious, I try Benadryl and it often helps.

Is mast cell activation the cause of all PMDD? I do not know, but I am suspicious. Am I insinuating women with PMDD also have MCAS? No, although it’s possible. Mast cell activation is not the same as MCAS. However, I wish I had known about MCAS sooner and gotten tested. Perhaps, I may have been able to stop the progression of my disease.

*****

As a final note, I’d like to share my biggest pet peeve of all time: women calling all birth control pills “the pill.”

When women tell me “the pill” made their PMDD worse, I want to ask, “Which fucking pill?”

The truth is some kinds of birth control pills absolutely make PMDD worse, while others, if taken continuously, can suppress PMDD completely.

Here are my tips for finding the right hormone medication to suppress PMDD:

  • Monophasic, not multiphasic
  • Avoid ultra-low dose
  • Continuous use (no inactive pills), not regular use
  • Take it at the exact same time every day
  • Be patient as your body adjusts to the new medication
  • Try another one if the first doesn’t work

As always, talk to your doctor about any concerns.

Beware of vision boards

In January 2015, I was full of ambition. I had just finished a master’s degree, my city council campaign, and a cruise to the Bahamas. I was ready to carpe diem the shit out of the new year.

On TV, I heard a bestselling author tell Oprah how she attributed her success to a vision board. I wanted to publish a book. I wanted to meet Oprah. I wanted to use modge podge.

I riffled through magazines and scrapbook paper, selecting the quotes and colors that would best represent my future self. As I cut out my favorite images, I imagined the vacations I would take, and the memories I would make.

What else did I wanted to accomplish? What else should I accomplish?

I recalled my recent book club meeting. The average age of the group is 70, but they kindly adopted me. These ladies are everything but old. Over brunch, they shared their recent adventures: political activism, concerts in the park, and tours through other countries. I listened silently, counting the years until my retirement. The truth is I never could keep up with these ladies.

I don’t remember which books we talked about that day, but I’ll never forget when the hostess mentioned she did yoga every morning before her walk around the lake. And every morning, her routine included a headstand.

Now I’ve tried to learn how to do a headstand in yoga class, but I was thwarted by my fears of falling and farting. In the security of my own home, my dogs dodged my flailing limbs. The blood rushing to my head felt less cool without the company of hipsters. But now that I knew that a 70-something could do it, so should I.

I carefully cut out the silhouette of a woman standing perfectly on her head and added it to my vision board.

***

Unfortunately, my body had other plans that year. Three weeks later, my legs weakened and I fell down the stairs. I quit yoga, suspecting I had over done it, but as months passed, even walking became a challenge. I spent most of the year fighting to hold on to what I had, instead on building upon it. I tucked away my vision board, hoping to regain control of my life.

***

This January, I stumbled across my vision board once again. I picked up it hesitantly, not wanting to stir feelings of disappointment or grief. As I studied the images, I realized I had unintentionally accomplished most of my vision for that year. For example, I read a surprising number of books as a result being stuck on the couch. When I had been given a burst of prednisone, I drove wide-eyed across the entire state to visit parks with my dogs. It was a terrible year, but there were moments of resilience.

However, in the middle of the board, I sensed the woman in the headstand laughing at me.

Oh my god. I was that woman, I realized. My world turned upside down that year. I had learned to stand on my head. How the hell was I supposed to know vision boards could be interpreted as metaphors?

I modge podged a prophecy.

***

So this year, I made another vision board. Much. More. Carefully.

I probably should have glued pictures of money and the Nobel Peace Prize to the board, but I try to be reasonable with the universe.

This year’s vision board features images of self-care, a quote from Mr. Rogers, and zero crazy yoga poses. There is one image that may be misinterpreted for me turning into a marshmallow, but prednisone has already accomplished that.

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My 2015 vision board

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My 2018 vision board

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!