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Awareness Campaign 1

In preparation for our upcoming Awareness Day, we asked patients to describe what it's like living with Mast Cell Disease.  These are their heartfelt descriptions of living with this complicated, unpredictable disease.  

 Living with Masto article


Dear Diary,

Today has been a really hard day. I had another attack last night.  Thankfully we were able to get it under control with just one injection of epi.  So far we have kept it under control with rescue meds, but as usual, I feel terrible today.  I am so grateful to be alive, but I am so sick of feeling unwell.

I feel stuck in this body that cannot keep up with my mind.  I want to get out of bed, go outside, eat something that will stay down for more than a few seconds.  But this body keeps me stuck, unable to walk, eat, drink, live my life.  I have medication and machines surrounding me to keep me stable.  I am grateful for home blood pressure machines and heart rate monitors so I can avoid the hospital for now, but I am so afraid that any minute I will have a rebound attack and my plans will have to change.  My plans always have to change.

Of course, I had to miss work again today.  I feel like I am always letting my coworkers down.  They seem to understand, but it’s hard to not have any control over this.  I want to be able to go to work, contribute and allow my team to depend on me.  Sometimes I worry that because I look normal on the outside, they might not understand how sick I feel...but then I remember they have seen it.  They have seen the attacks, the constant vomiting, dizziness, fatigue, anaphylaxis, the general weakness that comes often. They even seem to understand that what they see is not the worse of it.

My friends also appear to understand, for now.  I am always having to cancel plans with them. One day I am fine and the next my life is filled with epi pens and rescue meds.  Things can change so quickly for me, sometimes within minutes, and I cannot always give them much notice.  If I am really sick and it comes on fast, I don’t get to tell them until hours after I have missed our plans.  It must seem to them like I don’t care.  I wonder how many times I am going to cancel on them or not show up before they stop trying to make plans with me.  I hope they never give up on me.

The reactions have been increasing lately, my doctor says the disease must be progressing.  I have to go for more tests to see how fast. More blood tests, another bone marrow biopsy, another endoscopy...the tests are never ending.  The medication is never ending.  In addition to all of my current medication she wants to try something new, Xolair.  It scares me, everything with this illness scares me. 

I try to remind myself there are people who have it worse.  It’s true, but this is my reality.  I don't know how fast this illness is going to progress, I don't know what it will look like as it does, I don't know how Mastocytosis is going to alter the many plans I have for my life.  My reality is terrifying.

I pray that one day soon there will be a new medication to control this illness, so I don't have to go through this forever.  I can't even imagine a life where my symptoms can be controlled with just one pill, once a day, instead of a handful every few hours that just kind of work.  Of course, I also pray for a cure but that seems far off.  Right now, I would settle for something that would give me back my quality of life at least some of the time.  Something that allows me to feel well enough so I can enjoy my life.  I would even settle for a little bit more awareness and understanding.

Anyway Diary, I need to go take my next round of medication, check my blood pressure and get back to sleep.  Thanks for letting me get that out.  I feel a little bit less alone now, almost like someone was listening.