The Struggle is Real… An Update to MCAS

Yes, the struggle is real and doesn’t appear to be going away anytime soon. I am talking about the middle age weight, yet the middle apple shape. More medicine, excessive sedentary, ongoing pain, and binge eating to satisfy the never ending hunger feeling.

I never struggled with weight when I was younger. I even lost the weight after the fourth child within a few months. My metabolism allowed me to out eat anyone at the table. I could eat sweets and bread all day long without worrying about packing on the pounds. But things changed in 2010. My body went wonky, literally!

I lost control of everything. Another -ology added to the list of specialists. Since 2010, I have counseled with rheumatology, orthopedics, pulmonology, immunology, endocrinology, oncology, cardiology, neurology, allergist, gastroenterology, ear-nose-throat, counselor, and others. I counted 18 different medications that I take daily. These do not include the “take as needed” such as the EpiPen, Zofran, Klonopin, Levisen, Rescue Inhaler, Nebulizer. You get the picture.

You ask why am I disclosing personal information for the world to read. This is part of the autoimmune disease Mast Cell Activation Syndrome that no one seems to understand or better yet recognize in some cases.

Mast Cell Activation Syndrome has become more accepted among the medical field in recent years. However, some medical professionals do not acknowledge or have the understanding on how to manage this newly identified term. How do I know this? Experience through medical emergencies and hearing one doctor state this fact.

The doctor went on to ensure what I am experiencing is real and not in my head. I am not crazy nor am I making up these symptoms. It is not anxiety as some ER doctors or medical personnel claim.

It is hard for people to see what is going on inside of my body when the flares hit. The mast cells go berserk. My stomach turns causing nausea and vomiting, the face flushes and begins to itch, oh the head pounds while the sinuses congest and make it difficult to breath. My throat feels as if it is closing and the tongue is swelling. I gasp for air as I cough and my voice becomes hoarse unable to speak in a normal tone. [My voice is naturally soft and makes a struggling sound the longer I talk.] Tremors and joint pain set in causing discomfort. Sometimes the outcome actually produces anaphylaxis, but other times the stinging and tingling gives a false sensation. My family has become hypersensitive to my changes. They recognize the symptoms before I do, which I am very grateful for their persistence to get the ball rolling in following our emergency protocol that allows the episode to be handled without medical personnel.

What causes this reaction? Who knows? It can be from a scent, pollen, food, stress, exercise, walking, etc. This list can continue without any absolute findings.

What is my strategy to avoid a reaction? I am home most days. The great outdoors are viewed from the sunroom and windows. When the pollen count is down or smoke is not filling the air, I sit on my front porch with my friend the “Mask.” My friend goes with me everywhere even in the house. I wear it while cleaning, cooking, baking, opening mail (boxes), sewing, cutting fabric, crocheting–anytime to keep the dust, scents, irritants away.

Do I miss visiting with people, attending church, shopping without fear, working outside the home? Yes, I miss the good ol’ days. Due to the ongoing struggles, I medically retired in December 2019. It was a hard adjustment. But I felt I was not giving my 100% to the students, peers and school. My family was suffering. Weekends were spent in bed. The bed called me by 7 o’clock every evening for restless nights. Doctors and hospitals bills were outstanding in amounts. Something had to give- it was work or it was me. So after having experiencing an embarrassing episode in a public setting, I sought assistance and was granted medical retirement.

I do not know of anyone else that is experiencing MCAS. I have researched, read blogs and watched YouTube for gaining understanding and how to cope with my new lifestyle.

But as I reflect while typing, I think it could be worse. I have managed and continue to strive to be a good wife, mother, daughter, grandmother, sister, aunt, and friend. I may not be my best on some days, but I am here and with my family.

I have a purpose- God’s purpose for writing this post. It will be published without editing/revising. The title has been on my heart for many days to write my thoughts. There are others who suffer with conditions worse than mine but continue to give each day their best. They are my heroes, my role models.

May you find comfort in today’s post knowing that you can overcome any struggles you are facing as I have in accepting and writing this post.

Many blessings friends- Jan