About Me!

Hello! I’m Nicole. I’m here blogging in an effort to share, connect and learn about Mast Cell Activation Syndrome (MCAS) and all of it’s messy symptoms and manifestations.  It is a topic that I would prefer to ignore because it certainty isn’t all that fun, exciting, adventurous or even interesting however here I am.   My story is that my mast cells become “twitchy” and start behaving badly by releasing a cocktail of chemicals that throw me into an allergic, joint swollen state.  I also have a connective tissue disorder that plays along very nicely with my mast cell disorder.  You could say they are good buddies. When one wakes up, the other is soon to follow.  This means swollen knees, wrists, chest cartilage and bladder (interstitial cystitis).  It all began around age 18 when I developed an allergy to shellfish. Um! Weird! I had always eaten shellfish. Oh well, I thought, people have allergies.  My brother was a severe asthmatic with a peanut allergy so I thought I understood the whole food allergy thing.  At 20, I had my first child six weeks early. The doctor told me is a fluke and would probably never happen again.  Three years later, we lost my brother to anaphylaxis after accidentally ingesting something that contained peanut butter.  I guess I didn't really understand the whole allergy thing after all as I was shocked, wrecked and in disbelief.  I had never known of anyone passing from anaphylaxis.  He was my only sibling.  Life changed!  At 25, I became pregnant for my second child.  At about ten weeks, things started to spiral downhill fast.  I became extremely allergic to everything, lived on Benedryl and had idiopathic anaphylactic reactions through most of the pregnancy. Oh, and my son attempted to come ten weeks early.  So much for the fluke the doctors spoke about.  Early-term pregnancy is a manifestation of MCAS.  I was told my allergies would improve after the pregnancy. They did not improve but became worse.  This was in 1998.  I went to several doctors and the appointments usually ended with them shrugging their shoulders and telling me they didn’t have a clue as to why I was swollen, itchy, without good breathe and near a fainting state often.  Of course they were all fascinated with me as I was a medical mystery.  I would prefer to be fascinating for other reasons, not because I'm ill!  I finally found a wonderful allergist and he diagnosed me with idiopathic anaphylaxis.  I was put on a treatment program but continued to struggle with bad flare ups three or four times a year.  In 2011, I was flat out sick, off work for three months and seriously thought I was going to die so I trekked out to the Mayo Clinic and received a diagnosis of Mast Cell Activation Syndrome. Finally! A diagnosis to start researching and learning about.  The road to recovery began!  However, don't be fooled, I have setbacks and continue to struggle but it's more manageable now.  I hope this becomes a place where others like me can learn about this life-changing disorder so that we can all live as healthy as possible, find some peace and joy in what’s real in life and help support our MCAS friends.  I prefer to consider this disorder a challenge not an illness regardless of how debilitating it can be at times.  Through maintenance, attitude and support, I’m able to live a fairly normal life that includes work, recreational activities, exercise and travel. I cannot do all these things all the time which is frustrating but I’ll take what I can get.  I hope you’ll find this site a useful place to gain information, share experiences, and help others learn while finding some peace in your challenge.