To put it simply, having a Rare Mast Cell Disease sucks big time.
For those of you who aren’t on my Facebook you may have wondered why I haven’t blogged for a while. Since going to Toronto for my book signing of Finding Heart Horse at the Hay House I Can Do It Conference, I have been hospitalized twice. Two weeks apart, I headed to the ER in anaphylaxis and unable to breathe. Along with that I had been light-headed, teary, in terrible bone pain, nauseous with vomiting and diarrhea (at the same time unfortunately). Add into the mix a sensation of bugs crawling up the back of my neck into my scalp, flushing, chills, so fatigued I could hardly drag my body outside to take my dog out. The list goes on and on. You think you can manage it, ignore the symptoms or blame them on something else, such as I was doing, thinking it was my low iron. Mast Cells play havoc in every organ and system including the brain, tricking you into rationalizing the pain, the fatigue, the dizziness, the tears. Eventually, the inevitable happens.
It’s difficult for people to understand because when you see me, except in a major flare I look healthy. The outside is deceiving. Inside, my organs are paying a huge price for late discovery and diagnosis due to lack of medical information. I’m adopted. That’s a whole blog in itself, about the need for medical information for adoptees.
In Canada, 1 in 12 people live with a diagnosed rare disorder. There are approximately 7,000 types of rare disorders documented in Canada. This translates to nearly 3 million Canadians diagnosed with a rare disorder, one of which is Mastocytosis. These numbers do not include countless Canadians suffering without a diagnosis. To put this in some perspective, our organization is aware of approximately 300 people of all ages in Canada diagnosed with a form of mastocytosis.
Mastocytosis is a rare disorder (or disease). Medical research articles alternate between classifying it as a “disorder” or a “disease”, depending on the researchers’ focus on the various forms or types of mastocytosis. We refer to it as both alternately in an effort to be inclusive for all patients, regardless of type, form, variant or subvariant named within the mastocytosis definitions.
Mastocytosis and Mast Cell Activation syndrome affect all systems, organs and tissues of the body. In particular, skin, liver, spleen, lymph nodes, bones and bone marrow, lungs, gastrointestinal system, eyes and blood are the most documented as adversely impacted by these diseases. Research exists but much more needs to be done to further identify and understand the less studied effects of mast cell disorders on the heart, brain and female reproductive system.
The signs (eg.skin spots, unusual lab test results, etc.) appear due to an over-abundance of mast cells either limited to the skin or internally, or both. The symptoms occur when mast cells are triggered to degranulate. Mast cell degranulation is a normal response of the immune system trying to protect the body. However, these disorders trigger mast cell activation (ie. degranulation) with or without apparent or valid trigger. Things such as foods and drinks, extreme temperatures in water or air, emotional and physical stress – these are only a few examples – can trigger mast cell degranulation for these patients. If the patient has both an over-abundance of mast cells, in addition to having excessively active mast cells (ie. degranulating when they should not), then the symptoms and illness become more severe, prolonged and life threatening.
http://www.mastocytosis.ca The above description was copied from the Canadian Mastocytosis site. It has a wealth of information for patients and family members.
http://www.tmsforacure.org/welcome.php A great site that provides up to date research, support, information for both patients and families.
I don’t want to focus on creating a blog just about my illness but it is part of who/what I am and depending on how stable my mast cells are, it dictates a good part of what I am able to do..even blogging. I want people to be aware of those around them that may suffer from various invisible illnesses. There are many, and if you ask your friends, I have no doubt you will find several with the more common ones such as Fibromyalgia or CFIDS. Understanding “The Spoon Theory”is helpful to those you may have in your life that are ill.
There are also many support groups online and on Facebook and I have to say for both mastocytosis and adoption these groups have been my lifeline. I’ve heard it said that online friends aren’t real…I’m here to tell you they are as real and important as your friend across the street. After years of communication and coffee by Skype, they are a support system of compassion and knowledge and understanding that is so important when one is isolated and ill or struggling with coming to grips with issues only faced by one that is walking the same walk.
I’m going to include some pictures and then move on to another blog post. I just wanted you to know, I’ve been thinking about you even while
Living on The Edge.
I have pages of pictures but you get the idea. It’s helpful for those of us with rare diseases to chronicle symptoms by photo to help the physicians who aren’t familiar with something unusual. I also keep a journal with foods eaten and symptoms along with meds taken.
When I go into the hospital, it’s always after using at least 2 epi-pens myself. The Advanced Life Support medics arrive, as I have a tendency to crash quickly with low O2 sats. They start the IV’s, usually administer more epinephrine and ventolin along with O2 and benadryl IV. This last admission, was 12hrs. I was headed for the ICU and intubation, fortunately at the last-minute…. after 10+ 2mg epi-nebules, multiple ventolin treatments and the TMS Protocol, which is IV Benadryl, Solumedrol, Ranitadine, administered twice, my symptoms began to subside. My O2 sats were running low at 70-80 and when 90 on room air I was allowed to go home. Recovery time is usually a week or so from one of these episodes.
Life is Living on the Edge.
Each day is a gift whether you have an illness or not.
Make the most out of your 24hrs.