Becoming Visible

I was sitting laughing with my family at the end of the Memorial Day weekend when I began to feel nauseous- usually my first symptom that a big reaction will be coming. Initially I ignored this because I was doing nothing but  sitting in a chair so I assumed it would go away. Five minutes later it was getting worse and my internal voice was saying -“get your meds.”  I was frozen as I felt my reactive self take over. It’s hard to explain, but when a big reaction takes hold it’s like I’m somewhere deep in myself watching - I can’t speak and it’s hard to get myself to think straight. It soon became clear that my reaction was progressing. I was getting dizzy, my heart was racing and my stomach began cramping. Within a few more minutes it was hard to swallow -my throat felt full - almost like there was a big marshmallow stuck in it.

I took my medications and I found my pulse-oximeter to monitor my heart rate and oxygen saturation. This gives me clues if my injectable meds are going to be needed.  It takes 20 mins for the meds I had taken to kick in which  often feels like an eternity when you are mid-reaction. As I laid in my bed -I rode the waves of my reaction - symptoms improve and worsen until eventually a few hours later they settled and I could speak again. Of course I missed my son’s bedtime and I know he went to sleep worried about his Mom. By the end of the evening- I felt defeated - my mast cells had won.

This is the life of mast cell disease patients. We do nothing and fall apart. We are used to it- we are used to feeling our bodies lose control and of having days end different then we planned.  No one would ever know this about me. You can’t see it when you look at me nor can you imagine this happens often. No one could tell at work the next day that I was still recovering from my own body attacking itself.  That’s often the problem with rare diseases - they are hidden - and because they are invisible very few recognize or understand  them -including doctors. 

My Mom died this week 4 years ago- it was the hardest week of my life- I replay the events in my head over and over always looking for a different ending- a misstep that could have explained or prevented the outcomes and heartache that even today still remains.  They say you will not die from this.

 Ultimately I know two things failed my Mom- needed medical research  had not caught up to understand her delicate layers of issues.  And perhaps even more frustrating is that not one of the doctors who treated her, in two ER’s and two ICU’s, had heard of mast cell disease or her other co-morbidities. This means that even if there was research and knowledge they didn’t know what to do. Of course our physicians spoke to them by phone and even my Mom and I tried to teach them but that’s not enough or acceptable when someone is fighting for their life.

The shock from my Mom’s death is still with me to this day. Yes she had reactions often, a limited diet, she couldn’t be out in many places but this is the life of many mast cell patients. It is my life most days.  But she like us all, found joy in her daily life - her family -friends and her creativity. Until her final swift decline she was not suffering horribly and not one of us including her expected this outcome. They say you will not die from this.

Except for when you do. Research had not caught up enough to save my Mom from the complications that came from her rare diseases.  Saying you will not die from this make her diseases and life even more invisible and sends a message to everyone that this not a serious disease that urgently needs answers. Because it is.

For the past three years I have been involved with rare disease non-profits for mast cell disease and other co-morbidities.  I have had the opportunity to work closely with the practitioners who are leaders in research and I have been honored to serve as a patient voice to inspire their work. 

But people keep dying-both young and old and I felt like I had to scream louder. This blog is one way to share my story -so the world can understand what mast cell disease is like- what a reaction feels like- what restrictions I live with so people realize why research is so critical. I am not sharing because I want sympathy but because I want a future for myself, for my son and for the thousands of others like me.

I know for sure if my Mom were still alive she too would be screaming and it is in her honor of that I fight my battle each day- knowing that not once in her entire life - even in her very last breath did she give up.  Just like I will never stop fighting until people stop dying simply because we do not know

I hope you will help me- please consider sharing this blog -within your own community - the more who know- the better this will be understood and you may even change the life of someone who is still lost and looking for help.

While I am still accepting I can't bring my Mom back I truly hope I can save someone else's. They say you will not die from this but I know that you can.