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:
“COMMON TRIGGERS OF MAST CELL REACTIONS AND ANAPHYLAXIS
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
> 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.
- 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.
- 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.
- I packed my multitude of medications in my backpack with my ER Protocol signed by my physician. No issues going through security.
- I packed my “safe food” in my checked luggage.
- 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.