Living daily with indolent systemic mastocytosis (SM) for the last 27 years has led to other conditions, and with them, many medications. I often wonder how many of the symptoms I deal with daily are because of all the meds, or if they are complications of my rare disease and other ailments.
Many doctors, many prescriptions
I have SM, type 2 diabetes, osteoporosis, high blood pressure, anxiety, depression, bad cholesterol, liver problems, I deal with pancreatitis and diverticulitis often, and I have had heart complications in the past. So, I have a lengthy list of medications that I take daily.
I genuinely believe that all the medications combined are causing problems with my everyday life. I cannot stand up fast or bend over, or I get vertigo. I am always nauseated, and food does not taste like it used to. I already had heat intolerance from the SM, but now it seems like my skin burns and breaks out in a rash in the sun as soon as I step outside, even with sunscreen.
I have several different doctors who have prescribed medications: my general practitioner, oncologist/hematologist, gastroenterologist, cardiologist, dermatologist, endocrinologist, rheumatologist and orthopedist. They have all prescribed medications for me.
Each doctor has a detailed list of the medications I take and I use the same pharmacy for all my medications except my ISM prescription and my injections for osteoporosis. But I wonder if sometimes medications slip past them and I have drug interactions. Or it might be just an intolerance to the medications themselves. Sometimes if I forget to take my nighttime meds I feel better the next day. For once, I am not dizzy.
I am hoping that once I get in to see my new oncologist/hemotaoligsit in June that we (or a member of his care team) can sit down and go over all my medications.
I want so desperately to feel better. I just do not have any energy. I do not sleep at night. I average about three hours a day for days on end, and then I crash out for 12 hours. Then it starts all over again.
Seeking the strength to get out of the house
The exhaustion has caused me to isolate myself. If I do go anywhere, I have to force myself to go. I will make plans and dread the day as it arrives. But most of the time if I am feeling well, I will have the best time. I read somewhere recently that isolation was becoming an epidemic. I am assuming this all started with the lockdown during COVID. That is where it started for me.
During COVID, I became adjusted to not leaving the house. I did pickup orders for groceries. I did not like masks and could not wear them, so it was easier to just stay home.
Now most of the time I get my groceries delivered to the house. But I do make myself go into the grocery store a couple of times a month. I also go see my grandchildren take part in gymnastics, pig showmanship, softball, school events and anything else they have going on.
I also still love to travel. Vacations with the grandchildren are the best! I want to go to Moab, Utah, and jump off the cliff on the rope swing so bad it hurts. I still need that adrenaline rush to feel alive. So that is on my bucket list!
I hope that others living like me continue to thrive even with all the medications we are on and symptoms we must deal with daily. If you are also isolating yourself because it is easier to just stay at home, I pray you find the willpower to get out of the house. We just cannot let our rare disease win. I get my strength from the Living God. He never fails me.
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