• Chronic Illness

    Rare Disease Day

    How many Rare Diseases do you know? 1 in 20 people will live with a rare disease at some point in their life. I actually have 2 rare diseases: Ehlers Danlos Syndrome and Mast Cell Disease. Most rare diseases have no cure and many go undiagnosed. Rare Disease Day brings awareness to the public, researchers, and policy-makers. 100’s of groups all around the world are participating in Rare Disease Day this year. There are many events and fundraisers being held. My Rare Experience: Having Ehlers Danlos Syndrome means that you are born with this disorder. Although no one before me has been diagnosed, there are signs of it in my…

  • Chronic Illness

    Just Another Awful Appointment

    Today I survived my CT scan. It was one of the worst experiences I’ve ever had, and I think it was quite traumatizing. When I returned home, the doctor called to tell me that my arteries weren’t blocked. So, why do I feel like crying? The day began at 4 am, even though there was very little sleep all night. My last chance to eat “breakfast” and take some of my pills was 4. No food was allowed after 5am and we began our drive at 6. Since we arrived one hour early, I went ahead and signed in at the reception desk. When they called me to the back…

  • Chronic Illness

    Matters of My Heart

    As my list of chronic illnesses has gotten longer and longer, there are times when the worry and stress is overwhelming. The shock of having Coronary Artery Disease is still new. As my pill box has grown, I hesitate to list all my diseases and conditions. My real hope and goal is to live in contentment, despite an unforeseen future. While I’m waiting to see if I’ll need a stent in my heart, each palpitation and episode of breathlessness makes me a nervous wreck. So, the next few days is being spent resting. Thankfully, my family is very understanding. My husband has just taken over and is offering love and…

  • Chronic Illness

    Each Beat of my Heart

    When you have medical tests, one of the hardest things to do is wait for the results. After my Nuclear Stress Test on Tuesday, I was very concerned about the results. But, the phone call came quickly on Wednesday morning. I wasn’t called by the nurse, but by the cardiologist herself. She didn’t offer me any quick assurances, but gradually began explaining why my test results showed an abnormality. She explained how I had Left Bundle Branch Block, or LBBB. This cardiac condition means that the activation of the left ventricle of the heart is delayed, which causes the left ventricle to contract later than the right ventricle. According to…

  • Chronic Illness

    No Pain, No Answers

    The day was a dreaded one. It started off with a bang! I woke early to get ready for my appointment. I had an aura in the shower. The crescent-shaped lights were flashing in the front of my vision. In the past, they only flashed (brighter) and moved from one side of my vision to the other. I couldn’t stop thinking about how fearful I was concerning my Nuclear Stress Test. After eating my “light breakfast” and drinking a little orange juice, we headed on our trip to the Cardiology Clinic. I felt so sick on the 1 1/2 hour trip. I wasn’t allowed to have coffee or soda. I…

  • Chronic Illness

    Cold

    With my White Blood Count being low, it was inevitable that I caught the cold that my husband was suffering from. The last four days have been miserable, and you know what I mean. The stuffy nose, coughing, and head pounding of the common cold are awful. Adding the fatigue of all my chronic illnesses to a rotten cold has been overwhelming. I’ve been sleeping 12 hours every night. Waking up I realize that the fatigue hasn’t improved. All I can do is to wait it out. It will be over in about a week, I hope. Drinking lots of liquids, while I stay wrapped in blankets and watching Amazon…