Getting Out of the House

Twelve days ago, I went on a very exciting trip. I’m getting out of the house! More about that in after I tell you why it’s so thrilling to me.

For the past two years, I have been mostly housebound. I have not been able to drive and only go out when my husband, Brian, or one of my adult kids take me somewhere. But even that is always a gamble, because if I am exposed to an odor or perfume, it may cause my throat to close. The Mastocytosis Society has an informative pamphlet for patients to hand out to family, friends or health care professionals not familiar with mast cell disorders.

The following comes directly from the Emergency Care for Patients With Mast Cell Disorders pamphlet:


Triggers are unique to each patient. If a patient tells you that a certain drug, substance or environmental factor is a mast cell trigger for them, believe the patient even if it does not seem plausible. Triggers can include, but are not limited to:

> Unknown trigger- Idiopathic anaphylaxis

> Hymenoptera venom and other venoms such as ant, snake, jellyfish and insect

> Medications including, but not limited to morphine and derivatives, IV Vancomycin, aspirin, NSAIDS; can be tolerated in some patients. Proceed with caution.

> Anesthesia drugs (succinylcholine, D-tubocurarine, gallamine, decamethonium) and radiocontrast dyes

> Food or beverage, including alcohol

> Emotional stress, anxiety and fatigue

> Physical stress, e.g., heat, cold, change in temperature

> Friction of skin lesions or vibration

> Exercise

> Latex, odors/perfumes”

Besides the issue with triggers, I have been struggling with cardiac problems, most likely from my Dysautonomia. I am blessed to have some of the best specialists at Brigham and Women’s in Boston. Even though I live near Albany, NY, I don’t mind the trek to Boston (I should say my husband doesn’t mind taking me) to see what I believe are some of the country’s best. My heart rate has been in the 30’s and 40’s and my blood pressure in the 80’s and low 90’s. Not when I’m reactive, but all the time. Standing for any length of time is tough and walking is tougher yet.

So here comes my trip… The Mastocytosis Society was holding it’s conference in Orlando, Florida. I am one of 3 RNs that volunteer our time helping patients by answering questions online, by phone and coordinating care. One of us was too sick to go (not me!), so I was asked to help. How could I say no?

Typically, Brian travels with me but he had his work conference in another part of the country. So I put a plan in place to be successful. I can’t say I wasn’t a little apprehensive, but I was determined.

  1. Anytime I had to be around other non-mast cell people, I would wear my N-95 mask. I dislike wearing it, but it is protective. Mast cell peeps know not to wear any fragrances at all.
  2. I utilized the wheelchair service at the airport because I knew I could not stand for any length of time. I had to let go of the “gee, you don’t look sick” concern.
  3. I packed my multitude of medications in my backpack with my ER Protocol signed by my physician. No issues going through security.
  4. I packed my “safe food” in my checked luggage.
  5. I premeditated an hour before flight and meditated right before we boarded.

During the conference, that was packed full of amazing information from physicians and other professionals, I had to remember to rest. The days were long and I am not used to going non-stop for 14 hours. I did fit in meditation throughout.

It was a fabulous experience, meeting other mast cell warriors, sharing knowledge and just getting out of the house! Never give up and think this is all it will ever be.


Priorities for Healing

I have not posted in quite a while. The past few months have been challenging, but before I share some of the craziness, this is how I chose to focus on my priorities for healing. It is so easy to let your own health take a backseat when there is chaos around you… especially if you are a natural caretaker like me.

A close family member had an anaphylactic episode for the first time. She has the same diagnoses as me, but our trauma center was not familiar with it and did not believe her. She ended up in ICU and I had to be there every day to manage her care with the assistance of our mast cell specialist.

Then, I had an episode of anaphylaxis… that scary throat closing kind. My typical had been more cardiac with low blood pressure and low heart rate previously.

Next came several weeks of crazy low heart rates in the 30’s and 40’s, causing me to be short of breath, lightheaded and unable to stand for more than a few minutes.

Then my husband, Brian, had a freak accident. He fell on some unmarked liquid on the floor of a hospital he was visiting for work. He fractured his lower leg in two places, requiring a long leg cast, no weight bearing and minimal activity to prevent surgery.

Lastly, I celebrated my 60th birthday. I had told Brian two years earlier, as I lay in ICU after an anaphylactic episode, that if I was still alive at 60, I wanted a birthday party. This is significant because I had had so many back to back anaphylactic episodes that my physicians were unable to control, that I was not sure I’d still be here. Plus, I am an introvert and dislike parties. I had never had a birthday party. Brian’s leg mishap occurred right before my party, so my kids and I had to do all of the work. My kids each live 30 minutes and 40 minutes away, so I tried to take the bulk of the responsibility.

Here is what I have learned…
1. I cannot care for everyone else and leave myself to last. Hard lesson for me, the forever nurse.
2. I focused on the things that support my health, both physical and emotional. I cooked food to nourish me, meditated more each day, journaled my feelings and gratitude and let go of non-essentials (like my blog and cleaning).
3. I did more of the things that bring me joy. I fed and watched my birds, pet my loving pet, Buddy, colored in my many adult coloring books and spent time with my kids. They are not really kids at 29 and 35 but they will always be my kids.
4. No guilt allowed, over anything. I did the best I could do, with a heart rate that was so low, I wondered how it was sending enough blood to all of my organs.
5. Because I have such difficulty sleeping, I did not focus on the number of hours I slept (or did not sleep). I went to bed each night with the intention to let my body rest, to meditate and listen to soft music with my earbuds. No stress.
So… my family member survived the anaphylaxis despite the hospital. I survived my anaphylaxis well too. My heart rate is still way too low and my cardiologist is discussing pacemaker with my other specialists. Brian is doing much better. He is now in a short leg cast after 6 weeks in that uncomfortable long leg one. He still has a long way to go, but he’s more independent now, so I can have a bit more time for me. And my birthday party was wonderful! I saw family members that I had not seen in almost a year and couple of close friends who are near and dear to me.

Life is good. Remember to make YOU a priority for healing.IMG_4127


Meditation and Symptoms

If I had to pick just one thing that has helped the symptoms from all three of my disorders the most, I’d choose meditation. I can see some rolling their eyes, getting ready to click away or getting uncomfortable about this suggestion. But… let me assure you that I was just as skeptical when it was first introduced to me.

About 35 years ago, my husband at the time left me for another woman when my daughter was 6 months old. I thought I would crack up. I sought out the help of a local counselor who first help peel me off the ceiling and in later sessions, began teaching me biofeedback. Meditation was one of the first things I learned. I was in so much emotional pain that I would have stood on my head if he said it would help. As my very wise daughter always says, “We move at the speed of our pain.”

Meditation manages my Ehlers-Danlos pain fairly well most days because I cannot take any pain meds except Tylenol, yet my joints dislocate daily. It helps me handle many of the mast cell reaction symptoms. When my heart speeds up when I stand due to the Dysautonomia, I can slow it right down with meditation. But most importantly, on days when I have symptoms of all three disorders slamming me full-force, meditation allows me to feel calm even with all that chaos. I rarely get riled up and my husband will attest to my calmness through the most crazy events. I mostly feel an inner peace that is tranquil and beautiful.

Even if you have tried meditation in the past unsuccessfully, I encourage you to try again. One of the biggest problems new meditators come up against is trying to meditate for too long. I’m going to share my thoughts for adding meditation as your symptoms relief:

  1. Start with 1 minute a day. When you have comfortably managed one minute, add another minute. Don’t rush it; this is not a race. When you get to 5 minutes a day, rejoice! There is no magic time. I like to meditate for at least 15 minutes, but after all these years, I can get so into it that 40 minutes may go by. Remember, I have been doing it for years.
  2. There is no one type that is better than another. I have practiced many different kinds over the years. I presently practice mindful meditation, simply sitting in silence and focus on your breath and being aware of thoughts coming and going. Many prefer guided meditations in the beginning. I always recommend BellaRuth Naparstek. She is amazing! You can trial different types of meditation until you find one that feels right for you.
  3. This is a picture from Mindful magazine that clearly explains posture. The most important thing is to be comfortable, but not lie down and fall asleep. how to sit/Mindful Magazine
  4. Initially, it is helpful if you can make a space to meditate. It can be a simple as one pillow on the floor, or a chair in the corner of a room. Having a designated place at first helps your mind to switch into meditation mode as soon as you sit there. Here’s a pic of my meditation corner in my home office.meditation corner
  5. The most important advice is to make it a habit. Just like you brush your teeth every day, fit meditation into your schedule in a place that’s doable. The way adding a new habit works best is to tack it on to an existing one. For instance, if you have time in the morning and shower in the morning too, meditate right after your shower… or right before.

I will share other types of meditations in future posts. Until then, 1 minute is all you need to start. Oh, and the one thing I want to assure you, the goal is NOT to have an empty mind. It’s to quiet down enough to observe. Peace and calm to you…Jan meditating