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For a long time I tried to feel better and get back to health by myself.  So when I was feeling bad, I tried to change things in my diet or to get help.  When I was in pain, I consulted many professionnals.  When I was worried for my health, I saw my family doctor.  Eventually I felt that it was not normal to feel everyday that something was going wrong with my body. I even began to wonder if I was a hypochondriac or just too anxious, so I was keeping secret or overlooking different symptoms to my doctor.

After a few years of complaints and questioning myself about what I was doing wrong to feel  that bad, I finally got to a point where something was really wrong.   I was feeling tired and weak because of severe iron deficiency anemia, I felt anxious for anything when it is not in my genetics, I was so unable to think and  nearly unable to work.  I was blaming myself  for not feeling well, for being inactive, gaining weight and for all the pain in my body.   Finally, I have been diagnosed... by accident! 

In 2010, my family doctor referred me to a gastro-enterologist to explore the anemia.  When I told him how I was feeling better on a gluten free diet, he questioned all my symptoms, suspected herpetiformis dermatitis (skin type gluten sensitivity) and referred me to a dermatologist.  I remember that day: I was in the dermatologist's waiting room, flushed like I was used to be for some unclear reasons at that time.  I also remember how I tried to explain the dermatologist my journey to this appointment when she said: "But, that flushing  is not normal... it looks like mastocytosis!"   

And the real story began.   I got back to my family doctor who took time to review all my complaints of the past years.  He took some time to look at what mastocytosis was and said: "Well, it really looks like a possibility... let's try the treatment".  Of course, the treatment was also conclusive for the diagnosis.  As months were going by, I had to meet a lot of specialists and done so many tests before I ended with a diagnosis of MCAD.  The dermatologist still call my condition "mastocytosis-TMEP" because of the clinical presentation and skin biopsy that it slightly elevated for mast cells but not conclusive.  I consider myself like a hybrid type of mast cell patient; with the skin involvement,  the symptoms also show a systemic presentation, with flushing, GI distress, neurological symptoms, bone-muscle-joints pain, anemia, etc , but no test showed a conclusive systemic mastocytosis.  A day without any symptom is unusual but so appreciated!  Many symptoms are calmed down by the treatment but not dissipated.  Now, I know that I need to take care of what is bringing my mast cells to party and do a mess in my body (I really like this visualisation!).

This journey through diagnosis and treatment has been difficult but so inspiring!  I am so grateful for my family doctor, who was able to seek information, to trust my feelings and to join all my complaints together,  with all he knew about me and finally  put that together and get the full picture.  I am so thankful for the good days now and for my new wisdom for taking care of myself and know my limits.  I am much more aware of how people may suffer in silence, may not be seen and welcomed in their distress.  This journey changed my way to see the world, to meet people, to appreciate things.  As a psychologist, I would say that I work in a different perspective than before, more grounded and more aware of subtilities.  As a mother, as a wife and as a friend, I am now a different person; knowing that we all have things to live, but we don't have to feel alone, scared or blamed.    

As a person and for myself, I am now so much more oriented towards what will makes me feel good. I am not perfect and I no longer blame myself for what I do wrong. I still believe we are responsible for our health and with that belief, I just want to take care more and better.  I don't want to lose weight anymore, I want to gain healthier pathways.  I don't want to feel shame anymore, I want to be proud of myself.  Instead of feeling sick and always thinking about it, I want to feel alive and vibrant.