Hell's Bells and Mast Cells

My absurd life with mast cell activation syndrome

Menu

Skip to content
  • What is MCAS?
  • About me

Funny favorites

A few of my more humorous stories:

How to tell someone they smell

Oversharing

I walk circles around the hospital

The soup that helps me survive winter

The Christmas cards are stacked against me

Texts from the hospital

Candy WAS dandy

What goes up must come down

I did a thing

I’m so grateful my belly button exploded

Me vs. my dog after anesthesia

Going to the bathroom with a service dog

The more you know

  • About me
  • What is MCAS?
  • Fragrance-free accessibility
  • Funny favorites

Follow me for more laughs

  • Twitter
  • Facebook
  • Instagram

Follow me via email

Enter your email address to follow this blog and receive notifications of new posts by email.

Support my work on Patreon!

Top Posts

  • How to use FMLA leave for chronic illness
  • I’m allergic to my own hormones
  • The soup that helps me survive winter
  • 3 tips for MCAS warriors
  • Mac and cheese and other drugs: why ingredients matter
  • 4 facts you should know about MCAS
  • How to tell someone they smell

Topics

  • All the feels
  • Diagnosis
  • Disability
  • Don't do this
  • Gut and butt
  • Hope
  • Humor
  • Kidney
  • PMDD
  • Prednisone
  • Rare
  • Solitary confinement
  • Unhelpful medical advice
  • Validation
  • Writing

Past posts

Instagram

I would have lost my job years ago without the Family and Medical Leave Act. #chronicillness #MCAS #mastcelldisease #EDS #POTS #migraine #chronicfatigue #mecfs #fibromyalgia #PMDD #chronicpain #crohns #interstitialcystitis On Tuesday, I learned via Facebook that my ranitidine pills had been voluntarily recalled. When I called my pharmacy, I learned that my pharmacy had pulled all ranitidine at all locations. I learned Zantac, the brand name of ranitidine, had also been voluntarily recalled too. I panicked. Ranitidine is an antihistamine that allows me to digest my food by blocking H2 receptors. While the FDA is still recommending patients continue taking ranitidine, manufacturers are voluntarily recalling it for “ potential N-Nitrosodimethylamine (NDMA) amounts above levels established by the FDA.” This sounds scary until you realize NDMA is commonly found in foods such as bacon, fish, and cheese. Unfortunately, yet unsurprisingly, manufacturers are not considering the consequences of these voluntary recalls on mast cell disease patients. For me, the damage of histamine outweighs the potential cancer risk equivalent to bacon. Mast cell patients can have life-threatening reactions from trying to switch medications and many patients’ symptoms are not controlled on alternative H2 antihistamines like Pepcid. Luckily, my primary care doctor promptly wrote a prescription for compounded ranitidine and my employer’s insurance covered the prescription. Even the pharmacist was surprised at my coverage. I suppose this why I fight so desperately to keep my job, despite the relentless pain. That being said, I will now be paying $25/month more because of voluntary recalls and I’m already drowning in medical bills. I worry that my pharmacy will stop compounding ranitidine in the near future. I am told CVS and Sam’s Club are still filling ranitidine prescriptions; however, their pills contain dye. #mastcelldisease #MCAS #mastocytosis #mastcellactivationsyndrome #chronicillness #allergies #anaphylaxis #ibs #ibd #crohns #servicedog #poodle @zantacotc @sanofi @us_fda Raise your hand if you're an excipient connoisseur! 💊💊💊 Many mast cell disease patients react to the inactive ingredients in medications. These ingredients (also called excipients) can include fillers, dyes, binders, and preservatives – not the actual medicine itself. I used to think brand name and generic drugs were the same, yet I had awful experiences when my pharmacy changed my prescription. While the active ingredients are the same, the inactive ingredients can vary greatly. Now I only use dye free medications, and have memorized a list of manufacturers my body tolerates. The same applies to supplements! 💊💊💊 #mastcelldisease #MCAS #mastocytosis #chronicillness #spooniehumor #migraine #RDS #POTS #PMDD #fibromyalgia #mcs Another batch of MCAS BADASS shirts is printing soon! Link in bio. #MCAS #mastcellactivationsyndrome