A woman in the dark looking up into a shaft of light

What Life is Like With Mast Cell Activation Syndrome

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I remember the day I had my first anaphylactic reaction. In fact, I remember nearly every reaction I’ve had. They’re painful to remember, but nearly impossible to forget.

I was going to study at my tutor’s office, so I grabbed some Starbucks and an Advil for my pain and sat down to get to work. I remember my arm being itchy, I scratched and scratched and before I knew it that tiny itchy spot was a hive, and that hive turned into multiple hives. Things happened fast, and before I knew it, my lips were swollen and there was a tingle in my throat. I thought that was as bad as it would get.

A few months later came my reaction to morphine, in a desperate attempt to calm my pain the emergency room nurse gave me some through my IV. Within minutes my chest was hurting more than I could explain, it became hard to breathe, my heart was racing and pounding in my chest and I felt my chest tighten with every beat. I remember doctors rushing into my room, the first round of epinephrine was failing and a second quickly following. An oxygen mask was held over my face, and I will never forget the look on my mother’s face as she watched in horror.

I remember thinking to myself that there couldn’t possibly be another reaction, that it couldn’t possibly get worse than this. Little did I know, things could and would get worse…This was only the beginning. These episodes became more frequent and left us clueless as to the trigger, so I was referred to an immunologist who led us onto the path of a vicious disease known as mast cell activation syndrome (MCAS).

Mast cells are essentially the cells responsible for causing allergic reactions. They release histamine and other mediators that are related to inflammation and reaction. In my body, for whatever reason, these cells are triggered by the most minimal and uncommon of triggers. We discovered that not only was I triggered by food and medications, but by extreme temperatures and temperature changes, emotions like stress or anxiety, scents (food related or perfume/cologne related), right down to my clothes and detergent.

My body is in a constant state of reaction. I suffer from allergy related symptoms every day. But when my tolerance is running low, I experience a more severe reaction known as anaphylaxis, and that tends to be when my throat swells and I have difficulty breathing. To put this into perspective, during a good month I can have one to two anaphylactic reactions requiring the emergency room, but when my disease flares I can find myself reacting multiple times weekly. Since I’ve been diagnosed, I’ve used over 50 EpiPens, hundreds of doses of Benadryl, and had close to 200 allergic reactions.

Despite dealing with this condition for upwards of six years, there are things that still frighten me, and I can’t forget them. Things like the feeling of your throat closing in on you as it swells, your body itching and burning, the energy I use trying to gasp for between the wheezes, the anticipation of the burn of an EpiPen, but craving the relief that spreads across your chest almost instantly.

Then there is the fear that comes with wondering, “What if it doesn’t work this time?” The fear that consumes me every time I step out of my safe bubble that is “home,” every time that I put food to my lips, every time someone enters my house, or I enter theirs. The panic I feel when I walk into a cloud of cigarette smoke, when I start to shiver from the cold or sweat from the heat. The gamble I take when I take a medication that was safe the day before but may not be safe today because that is the gift of MCAS. Those intense emotions and experiences never escape my mind, they invade my dreams and consume my memories.

Sometimes I swear I can feel my throat swelling…Or that my face is flushing. Believe it or not, sometimes I have nightmares of having a breathing tube put down my throat and can swear I feel it there. A drastic measure I’ve had to, unfortunately, endure more times that I can count.

In this unexpected whirlwind of losing things I love because of a disease that I can’t control, I’m reminded of the infinite number of blessings I’m surrounded by. I’ve learned to appreciate the mere existence of all that I love and to have that passion be enough to get me by. It took a while (and I still have my days) to admire from afar, and not hurt and grieve that I couldn’t be a part of it, but that day still came.

Really, I am so unbelievably grateful to have that bit of sunshine on the days where I’m reacting to my own hormones. MCAS is a deceitful, selfish, consuming disease. It pops up at the most inconvenient times, it will puzzle me and my doctors, it will require a lot of Benadryl, but its taught me to appreciate the calm and beauty that remains despite all that this disease has tried to take from me. That in itself is enough to get me throughout each and every day, no matter what it may bring.

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Thinkstock Image By: stephconnell

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How I Honor My Son on Rare Disease Day

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My son is 19 months old and has mast cell activation syndrome (MCAS), a rare condition that affects every aspect of his life. The past 19 months have been a journey as we learned to navigate this challenging condition while keeping him as healthy and safe as possible. My son can have severe reactions to practically anything, including most foods, heat, cold, scents, perfumes, cleaning agents, medicines, stress, pain, fatigue, and several environmental triggers. He takes four medicines several times a day (all compounded free of dyes, preservatives, and flavors), and he has other rescue medicines for acute flares.

MCAS caused him to have a diagnosis of failure to thrive during his first year of life, as he was unable to tolerate breast milk or any formula, including every hypoallergenic elemental formula on the market. I pumped around the clock, eating only three foods to avoid triggers, only to find that he was not absorbing nutrients and his gut was rejecting my milk. It was not until we started him on a modular formula, gave him an effective cocktail of meds, and made significant lifestyle changes did we start to see some weight gain. He is now close to the 17th percentile for weight (up from < 1st percentile a year ago), and we are so proud of him for his resilience. No matter how much he has been through, he is still the sweetest, happiest, incredible little boy. He has the most amazing attitude and character.

I often hear from friends and family that he looks so good. It’s true – he really does. He has an army of incredible doctors, pharmacists, family, and friends working so hard to help him looking and feeling as good as he does. But with MCAS, there are bad times too. Sometimes they are subtle, and sometimes they are invisible, but they are always just a moment away. Rare diseases give you a double punch of a complex medical condition and a condition that no one understands or people don’t believe because they cannot see it.

A family of three dressed as the Incredibles.

Knowing what you know now about my son, you may see him differently, and that is OK. He is different, and also beautiful and remarkable and unique and special. Seeing him for who he is and what he has, and acknowledging and respecting the reality of his condition is what keeps him safe.

Spread awareness, spread love and spread kindness. Rare disease Day is February 28, but let us celebrate the successes and acknowledge the challenges of living with a rare disease every day this month and throughout the year.

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What a Trip Looks Like When You Are on the Spectrum and 'Allergic to Life'

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Recently, my partner and I had to go to a doctor’s appointment. The doctor in question is a neurologist who specializes in adult autism and who is usually booked up three months in advance. We were actually very lucky to get the appointment at all — but there was a catch: The appointment was in a city that required three days’ travel from my comfortable safety nest/home in the mountains.

A trip all the way to the coast with no provided lodging, as this was technically an “outpatient” visit.

Those of you familiar with my writing already know this, but I am:

a) an adult with Asperger’s syndrome
b) someone who is literally “allergic to life” — I have mast cell activation disorder.

And I have to leave my home and safe space for three days?!

Once my partner finally managed to pry my fingers off the bed rail — and after putting on some violin music and making me a nice, hot cider to calm me down — we sat down to do some serious planning.

I’ll spare you all the logical arguments required to convince me this was a good idea, or the rewards I was offered (I got to see a real-life submarine. From the inside! And a steam train!) and will stick instead to the various practical aspects of this Tolkien-esque — in my view — epic journey.

How do you pack to deal with a hotel room, a strange city and a diet restricted to 15 organic foods? With a great deal of creativity and difficulty, actually.

First, we had to find a workable hotel. We actually wanted one without central heating and air — as the air in those buildings usually circulates through all the rooms, carrying perfume and cigarette smoke as well as the fumes of cleaning products. We also wanted a hotel where there was a balcony or openable window available to allow in a constant supply of fresh air. This often means seeking an older hotel that still reviews well online.

This is actually fairly easy to do — I’ve found some good search terms for this are “family-owned” or “developed property.”

First, we called the chosen hotel and paid for four days. That’s one more than we would be staying for. We then offered the desk clerk an extra $20 to air the room out completely for the whole first day, explaining we’d arrive on the second day.

We asked the management to make sure it really was non-smoking, to keep all the maids out of it, to not clean it after it was aired, and to, in general, keep it human-free until we arrived.

Then we explained about my medical needs and autism so the staff would not panic when a masked, gloved man came into the waiting area.
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That, the bribe and a whole lot of explaining took care of the social aspects.

Next came the packing process.

A really important part of this process includes packing a small window fan and an air purifier to help remove residual scents from the room, or to help deal with accidentally introduced chemical elements, like the smell of cigars or cologne in the hallway.

After that, we get to the more personal packing.

Now everyone is different, but I thought it might be interesting if I shared our final packing list with you:

1. Three days’ worth of clothing, including protective items and awareness T-shirts.

2. My sleeping bag, as I’d almost certainly be allergic to the hotel beds (detergents, air fresheners, bleach, etc.).

3. An inflatable mattress — in case the sleeping bag was not enough protection, or the bed was too hard.

4. A pump for the mattress.

5. My stuffed kitty cat — my “safety totem.”

6. A triathlete’s transfer mat — because I cannot touch carpets and it’s hard to change clothes while standing on your own shoes. (A yoga mat works, too, but the transfer mat is smaller and easier to pack.)

7. A swimsuit. We were near the ocean and I love to swim.

8. An eyeglasses case.

9. Spare eyeglasses in a separate case.

10. Medication — hydrocortisone, six EpiPens (for worse case scenario usage).

11. My med alert bracelet.

12. A plastic bag for my swimsuit and towel — we use a zippered packing bag from an old comforter.

13. A hot plate — I can’t eat in any restaurant and food availability varies by city in this state. So we had to cook daily and get special permission to do so.

14. A frying pan.

15. Coconut oil.

16. Three days’ worth of food.

17. Two cases of distilled water — 64 bottles. I have to cook and wash with this as well as drink it.

18. All my medical paperwork.

19. Three days’ worth of reading material.

20. Q-tips, tweezers, nail clippers, my hairbrush, my special hypoallergenic toothbrush — my dopp kit.

21. A very complete first aid kit.

22. Swim shoes.

23. A laundry bag to keep dirty clothes from touching clean clothes and avoid cross-contamination.

24. Wallet.

25. Watch.

26. Cellphone.

27. Emergency contacts list.

28. Stress ball — small, goes in my pocket, I squeeze it when I feel a need to stim.

29. Surgical masks — 12.

30. Surgical gloves — 12 pairs.

And that was our latest list. We did end up needing three other items, which I will note here:

  • paper plates
  • a large, glass drink/soup mug
  • paper towels

But we were fortunately able to buy those at a shop near the hospital complex.

And I survived the trip. So this sort of thing, while difficult, is doable.

I hope that gives you an idea of what life can be like for people like me with invisible illnesses — and remember, I’m an adult. There can be other challenges for children and their hard-working caregivers.

Thanks for reading, and for caring!

Image via Thinkstock.

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The One Thing That Helped Me When I Didn’t Have a Name for My Illness

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I am 4 years old. I am swimming in the ocean at a family reunion, and everything is beautiful and blue. I have just learned to swim and I feel triumphant — until a rip tide comes in and holds me to the sand with intense force. I am too small to reach to the sky above me. I am already underweight by then, and there simply isn’t enough of me to fight the tide. I am rescued by a kind, distant relative who happens to notice me. It is the first time I recognize my own mortality. I am terrified.

I am 5 years old, playing in the woods by my house. I am wild and free, and covered in dirt. I am completely in awe, and I don’t ever want to leave. The next week, I will be hospitalized because I am dangerously sick. I will be measured and poked and prodded. A big woman will make me pee in a cup. I will cry once, but then I will accept that apparently, this is what I do now.

I am 12 years old. My sixth grade class is doing trail restoration. I revel in the sunshine and the sweat and the break from classrooms. The anxiety disorder that often dominates my days at that age doesn’t take hold that day, and everything seems balanced in my world.

The next day, I develop a rash that turns into such a severe case of poison oak, I am put on intense steroids and miss the next week of school. I do not enjoy the break from the classroom that time.

My parents sigh. They always knew my body was sensitive.

I am taken to the doctor where I demand to know if I will still be allowed to go hiking. The doctor begrudgingly says yes, but I have to stick to wide trails. Wide trails are full of people and noise. I sob at home in my little blue room, because I need deep wilderness as much as I need those medications.

 I am 14 years old. I have a Facebook account for the first time. I utilize it mostly to complain that I am stuck home in bed. At the time, we think this is just because I have a weak immune system and keep catching the flu. We are wrong.

I am 16. I apply for an internship at the Marin Headlands, a wilderness area near my home, where I would teach children about science and green spaces and national parks. I am accepted. I love my job  and I am proud of it. One day as I guide a group of children through a game about the water system, I trip and my ankle gives out. I cannot get up again and have to be half-carried to a car that delivers me home.  I attend physical therapy for months. We add “weak ligaments” to my growing laundry list of problems.

I start displaying other, stranger symptoms; no one knows why. My body erupts in red flushes and I shake violently, even with the heat on. I am not angry or sad anymore, just numb with fear and fever. They talk about Lyme disease and cancer in hushed voices. It is neither. I wish for a diagnosis as hard as I wish for my first kiss. I get the second, not the first.

I am 17. It is my senior year of high school. This year is going to go right for me, I have decided. I have willed the end to the endless blood tests and confused doctors. I will get better, by sheer determination alone — if the doctors cannot help me,  I will help myself. I don’t, yet. I pray fervently. I miss about half my senior year. Kids at school think I’m cutting class. I read the books from my bed and dream of the forest.

I am 18. I have been diagnosed with mast cell activation disorder. No one has heard of it, and I do not fully understand it. But at least it is a diagnosis, and with it comes medication.  It is a beginning. I am starting college, and my university runs an outdoor immersion program I am excited about. My disease flares, and I cannot go backpacking. But I go on an overnight canoe trip instead, and I realize all over again how powerful a hold the natural world has on me. I watch seals play and see a bald eagle. I feel reborn in the Northwest.

I am 20. This time I am leading the outdoor immersion program, and for the first time I will lead a backpacking trip in the wilderness. I am scared and excited. I plan every detail. The day before we are set to leave, I have a flare of symptoms and my blood pressure shoots to 140/90. I am sent home in an inky night, holding back my sadness until I have time to let it wash across me.

At home, I lay in my bed, weeping, aching for the trees, for my co-lead, for the experience of sharing the wilderness with others.

I sleep in my housemate’s bed because I do not want to be alone.

I am still 20, and I am fighting.  

It is two weeks later. I am better, for now. Inevitably, the bad days will come back, but right now, it is the middle of September, and summer is still lingering. My friend asks if I want to go backpacking with him, maybe take the trail I missed. I pack my clothes and bowl and sunscreen, and I escape.

I realize for the hundredth time, no matter how many days I spend in my bed, I will keep rising.

I will get up again, and I will hit the trails, hit the water, climb the trees and lounge on the sand. I will build a lifetime of memories of dirt and rain and sleeping under the stars. I will thank my body for the good days, and turn my face to the sun.

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When My Child Is Developing at a Different Pace, I Remember This

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I’m a physical therapist. I value the scientific method. When working with my patients, I use objective measures and assessment tools to determine level of progress and the effect of my treatments. When a patient does not perform well on an assessment tool, I do not want them taking it personally — it is just one measure of function and does not define them as a person.

Given this background, why is it that I take it so personally when my 11.5-month-old does not meet milestones, or ends up in the gray and black zones of assessment tools? Why does it feel like a punch in the gut every time I hear about all the words someone else’s child says, when my almost-toddler, who used to have “ma” and “ba” sounds, only utters “ga” and “da” and often is silent? Why do I worry so much when my son, who has been crawling since he was 7 months old, loses control of his arms and face-plants into the floor? Why do I still cry when I cannot fill out assessments about his self-feeding because he still cannot tolerate any solid foods?

I worry because I know regardless of how tough this first year of parenting has been and all of the therapies he already had, there is still so much more work to be done. Even though it took months of heartache, labs, tests, therapies, doctors appointments and sleepless nights to get his diagnosis of mast cell activation syndrome (MCAS), there’s still a strong likelihood something else is at play. I worry because I feel like there’s reason to worry. I worry because I have given all of myself to him this past year, and I worry I will burn out and not be able to give as much as he needs and deserves in the coming years.

I love my son for who he is and value his personality, his sweet and playful nature and his strong independent spirit. But it has also been a tough first year, and I am well aware the tough times may not be over yet.

I am constantly reminding myself that in loving and accepting him, I must love and accept his pace.

He will do things on his own time.

He will need more therapies, more treatments, more assessments and more assistance than some other kids, but I have to trust that he will get there, that he will say “mama,” and I’m sure one day I will not be able to get him to stop talking.

And while I am on this ride with him, working endlessly to give him the tools he needs to be a social child and eventually a successful adult, I challenge myself to stop worrying and instead celebrate.

My son will be 1 year old next week. He has accomplished so much, and has become such an incredible person already. He crawls everywhere. When his arms give out and he falls and hurts his face on the ground, he does not let that stop him. He just keeps on crawling! He is determined.

He takes his medicines four times a day with minimal fight, even though they are unflavored and taste terrible. He is so brave.

He loves his books. He feels pictures, turns pages, and refuses to take his bottle (no matter how hungry he is) until we read one more book (or two or three!). He is thirsty for knowledge.

He loves to play. This child will play and play and play, regardless of how bad his stomach is hurting, how much his rash itches and how much he just threw up five minutes ago. He will continue on playing, often without a pause. He is endlessly strong.

I choose to celebrate my son as we near his 1st birthday and every day. I choose to suspend my worry and to allow myself to simply enjoy my son for who he is. He deserves it, and I deserve it.

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The Reality of Becoming a 'Rare Disease Parent'

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This is my reality.

I’m coping with the fact that my child has a medically rare, chronic diagnosis: Mast Cell Activation syndrome (MCAS). I haven’t fully accepted it yet, but I’m getting there. I recently read a blog post about being a mother of a “special needs” child. I cried when I read it because I never thought of my child as “special needs,” but when I read the article, I realized it applied to me perfectly. I am a mother of a child with special needs. No quotation marks needed. My child does not “look sick.” I am often told: 1) how good he looks; 2) how he looks like he’s gaining weight; 3) how happy he seems.

My response?

1) Yes, he does look good. It takes a ton of effort to keep him looking this good. The majority of his symptoms are internal anyway, so even at his worst, he would probably still look pretty healthy.

2) Tell that to the scale. He’s not gaining weight right now, and your comments minimize my reality and the intense fear, sadness, helplessness and frustration I feel every time we go to the doctor’s office for a weight check and see his lack of weight gain.

3) He is happy

We are so lucky our child is generally happy, playful, relaxed, inquisitive, patient and engaged. But his disposition is often like that even when we know he’s uncomfortable, which hurts us. And when he’s really screaming and crying, we know the pain must be pretty bad. That hurts more.

This is my reality.

I’m coming to terms with the fact that my 10-month-old son is allergic to everything and anything — meaning he could react to triggers (food, environmental, etc.) with vomiting, rashes, abdominal pain, sleeplessness, restlessness and hyperactivity. And once he reacts to something, it can take weeks to start seeing improvements again. I’m nervous during play dates, and I’m terrified to take him to parks and public places. If I take him outside, I spend the entire time worrying about every possible trigger, so we just go back inside because it’s a lot less stressful. Any time I have someone over, I’m half-listening to their stories and half watching them like a hawk. (Yes, you just washed your hands. Thank you. But then you ate those pretzels. So yes, you need to wash your hands again before you touch my son or his toys. Yes, I’m serious. This is my son’s life. This is my life. Wash your hands again.)

This is my reality.

I often find myself comparing my child to other children with chronic health conditions. I look to other children and sometimes think “at least my child doesn’t have ‘XYZ.’” This mindset minimizes my own child’s condition, and dumps me back onto the denial train. It also makes me feel guilty for having sad feelings regarding my child or my situation. How can I feel bad about this when another parent is dealing with that? Not healthy, I know. I’m trying to find acceptance by looking to families with healthy children, and acknowledging my current experience is quite different. I’m pretty sure typical families do not take their child for weekly weight checks or scrutinize over every dirty diaper. I’m sure that it never crossed their minds that their child may have an allergic reaction to heat, and therefore maybe they should not go to the park that day. Very little of what we’re going through with our child is considered “normal.” I’m allowed to mourn the loss of my hopes and expectations for my experience as a first time mom. I’m allowed to compare. It’s all part of my process.

This is my reality.

Other parents are proud of their children for talking, walking and clapping. We are proud of those things too, when they occur, but we’re also really proud of how well he takes his medicine. My child, who is 10 months old, is just now starting to take his disgusting, compounded medicines without crying or spitting them out. Every time he takes his meds (which is four times a day), we throw a party, praising him profusely. “We are so proud of you! Way to go! What a big boy! What a trooper! Yay baby!” And this really pisses me off. He shouldn’t have to take his medicine like a big boy. He is a baby! And that compounded, no-dye, no-flavoring, no-preservative medicine tastes terrible. He has every right in the world to protest, scream, and spit. But he just takes it peacefully now. I’m proud of him, and simultaneously, it breaks my heart that this has become his new normal.

This is my reality.

My child was diagnosed with Failure to Thrive (FTT) at 4 months old. We calculate everything that goes into his mouth, to the 10th of an ounce. We feel anxious when he does not want to eat some days, and we celebrate each ounce he does eat. We take him to see a GI specialist every three to four weeks, and we take him to the GI’s office weekly for weight checks. We used to weigh him at home every night before bath time, but then stopped when we realized it was not helping anything, and it was not changing anything.

This is my reality.

I have the sweetest child, who is also my greatest educator. He teaches me patience like I never knew it was possible, and to be comfortable with uncertainty. We rarely feel confident in knowing what triggered a reaction. Sometimes it’s near impossible to tell whether he’s teething/fighting a virus/[insert normal baby thing here] or having a reaction to something. While I’m not at the point of being comfortable with these uncertainties yet, I’m learning to accept them, and I’m more familiar with them now. He teaches me to be strong, and to speak out. I have always been one who is eager to please, who does not rock the boat. By advocating for my son, I have found my voice and my strength to speak up, ask for services, demand answers and expect nothing less than the best for my child. My child is worth it. I am truly lucky to be his mommy, and I hope my struggles during this time will help eliminate or ease the struggles he will face as he gets older. My child came from me. He is a part of me. He is my reality.

This is my reality.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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