Okay, I have to admit: this is a post I never thought I would write. I always try to keep everything upbeat and positive as much as possible. Not that this post won’t be uplifting to some but for me it just brings back memories that can sting. But lately a lot of people have asked me about a rare disease I have – Mastocytosis – because it is featured in my first novel “The Keys to Love”.
In “The Keys to Love”, the main character, Maddy Sumner, has this illness and it is one of the many reasons she leaves her home for a month to live in the Florida Keys where she hopes to find some clarity on what she wants to do with the next chapter of her life. Many readers have asked me about the illness so I thought I would go in depth a bit more about my diagnosis and how it has affected me.
I started having what we now know as symptoms of Mast Cell Disease when I was a teenager. I was bothered by things such as muscle aches, migraine headaches, joint pain, acid reflux, irritable bowel syndrome, unexplained rashes and foods that didn’t agree with me, making me very sick. My bouts of “feeling like I can’t breath” were blamed on anxiety and stress. Looking back, I can see where I handled these problems well, going on with life as normal as possible as a teenager and young adult, not letting how I felt stop me. But the fear of “what is happening to me” and “am I going crazy” seemed to fill my head constantly. What made this even more odd, which is a blessing and a curse, was that I didn’t look ill.
Over the years I was given 12 different diagnoses, ending up with 10 different doctors. Even with all this going on in my life, I got married and at age 24 gave birth to a beautiful baby girl. But 6 weeks after her birth, she was diagnosed with 5 different birth defects (we would learn of more later) so I suddenly not only was a person with invisible illnesses but now a caregiver to a child that was differently abled. My daughter has done quite well over the years (endured 32 surgeries and 45 medical procedures), now married and out on her own, something her doctors couldn’t reassure us of when they delivered the news of her health issues when she was an infant. But again, we kept things positive, treating her like any other child and she thrived.
And even though I was still dealing with my myriad of illnesses, I thrived too. At one point I even worked 3 jobs, not because I had to but because I wanted to. In hindsight, that might not have been the best idea – can we say stress? But at the time, it gave me an outlet from being at doctors’ offices and hospitals all the time, seeking treatment for either my daughter or myself.
In 2012 I learned that a friend of my daughter was very sick from a rare illness. Since I love to crochet, I made her a comfort blanket. The day we went to give it to her was life changing. We sat and talked and when she learned of all the illnesses I had, she suggested that I see her doctor because it sounded similar to what she was experiencing. I thanked her but really didn’t think it could be anything near what she was going through. But I looked up “Mastocytosis” on the internet that evening and had tears in my eyes. Could this possibly be the answer to my many symptoms that now included an irregular heartbeat, sudden bouts of low blood pressure, low blood sugar, extreme dry skin, loss of circulation at times to my hand and feet, sudden hives at any time even when I would take a shower, more food intolerances that had my diet limited to about 10 foods, thyroid nodules and more? I had chalked it up to stress once again. In 2002, I developed uterine cancer and had treatment. And during this same time, my husband left, and we went through a divorce. Another double whammy so stress had to be the answer!
But I took that bold step and made an appointment with the specialist. It took 6 months to see him, but during my first appointment, after spending 3 hours with me, he looked me in the eye and said: “We have to do some testing but you are a classic case of Mast Cell Activation Disorder, possibly Mastocytosis.” I was given the information of the medicines I would need and more. And all the many tests, including a bone marrow biopsy, came back positive for the disease. At the age of 50 years old, I found out that I wasn’t going crazy and that those 12 diagnoses were reduced to 5 diagnoses with Mastocytosis being the main illness. It wasn’t a coincidence my doctor, one of the top researchers and doctors for this disease, happened to live in my city at the same teaching hospital where I had spent the last 30 years with my daughter for her health issues and my cancer treatment. It was a “God” thing.
I have to admit that at first I gave in to the illness. I had a 4 month pity party, something I didn’t even do after having cancer! My entire life people, even some very close to me, had treated like I was a hypochondriac. Now I was able to say: “See I told you so. I am sick! So there!” But when my daughter got married, I started thinking about everything we both had had been through: illnesses, surgeries, body braces, months in hospitals, PICC lines, feeding tubes, cancer treatment, a divorce. If I could go through those things, I wasn’t going to let this disease become who I am. I made a decision right then that it was just along for the ride.
Now it’s one thing to make a bold statement like that. It’s another to follow through. At first I didn’t know what to do except educate myself and go back to some old routines that help me through dark times of the past. In 2014, I reached out to a group I belong to on Facebook for some coaching advice about life. Little did I know that I would be handed some tough questions that had me pondering what I really wanted to do. Then in 2015, I met my now best friend, Donna Gauntlett, again through another Facebook group. We became accountability partners, each of us writing our very first books! Embracing my creativity for writing and art has become a BIG asset on this constant journey of dealing with Mastocytosis. But I will have to save that story for another post.
It took a long time for me to receive my diagnosis as it does for most adults. The easiest way to describe Mastocytosis is that it is similar to having a severe allergy to a particular item/s, say peanuts. You eat it and you could end up with life-threatening complications real fast! With Mastocytosis, though I test negative for allergies, my Mast Cells act as though I’m allergic to everything. I can trigger to ANYTHING: sunlight, heat, cold, vibration, water, chemicals, fragrances, medicines, artificial ingredients, dyes, inert additives, any foods, etc. It is still considered a rare illness/disease with more than 60 symptoms. That is why it is difficult to diagnose unless you have some clear cut medical tests.
I have to give a lot of credit to my parents for teaching me positivity while I was a child. Also, the value to keep pushing through no matter what. It has given me that “I can do this” attitude even though I’m the first to admit I have my down times too. My husband, Jeff, who I have now been married to for almost 14 years has been a rock, going through the ups and downs of this disease with me. It doesn’t bother him that I take my safe foods (about 7 foods right now) to restaurants when we go out to eat or that when we travel (especially for book tours), it seems we take the entire house with us since I have to bring my own linens and be able to cook my own food. He doesn’t think it strange when I have to walk around with a breathing mask at times, especially if we are in a crowd. I’m the one that still gets a little self conscious about wearing that mask and I feel like I put others out by having to do some quirky things to stay as safe as possible. I’ve been gently kidded by my family that I need to live in a bubble but I did that those first 4 months and I don’t want to go there again.
So that is my life with Mastocytosis. Sometimes it’s easy, other times it’s not. But we all have those hurdles in life that we have to deal with – the good and the not so good. As long as we do our best to see the bright side as much as possible, life is a lot happier. For me, my symptoms don’t seem as bad if I do things with self care and self love in mind. That is hard for this “Type A” gal sometimes but I keep at it.
Press on with your dreams even if you have obstacles to overcome. Everyone has their own – just don’t let them stop you. You are so worth having your dreams come true. They may not be on the timeline you want or even turn out exactly as you planned but they will be yours. There is a lot of happiness and self confidence that comes with pursuing your goals even in the face of tough times.