If you ask anyone with dysautonomia how they feel about medication, you'll probably get feelings that stretch on the edges of both sides of a pendulum. On the one side is the dependence on medications to help us to function, without it many would be bed ridden. Medications that keep us from fainting, barfing, insomnia and fatigue. We can't help but be thankful for the benefits they offer. On the other side of the pendulum, is the side effects of those medications, the inability for those medications to take away all the symptoms and the emotional roller coaster of trying one medication after another to find something that helps us to feel somewhere close to normal. And then when they don't work picking yourself up off the floor, dusting yourself off, put a smile back on your face, only to go through the process over and over again searching for the cure.
Pre-POTS Michele would be totally surprised by the fact that I would ever be dependent on medication to survive. As a young adult I often would refuse to take aspirin when I had a head ache, and even would chuckle at my close friend's family who sold Shakley (a vitamin and supplement business). I remember my friends dad who would explain the benefits of each vitamin in his overflowing fist of vitamins he took daily. In my head I would giggle at the purpose of taking alfalfa, I mean I'm not a cow for goodness sake! Why would a young healthy adult need to take vitamins for anyway? The fact that I survived young adulthood is a complete shock. My daily diet consisted of a carnation breakfast shake in the morning, a happy meal (cheeseburger, french fries and a coke) for lunch, and a brownie and coke for dinner. Who needs vitamin supplements with a diet like that.
Now old Michele is still resistant to being on medication, but the realistic Michele knows that I need them to function. Having a disease that so little is known about, makes it tricky for doctors to prescribe medications to treat it. Many of us feel like Guinea pigs, testing one medication after another, only to watch our bodies baulk from those that don't work. For me, when I hear about something new that the doctor wants to try I've become optimistically cynical. I dread putting my body through the possibility of negative side effects, but optimistic about the possibilities that this could be the one that works.
I was recently given the news from my general practitioner that she reviewed my case with a doctor from the Mayo clinic, he gave her some recommendations for my treatment for POTS. The recommendation was for a new supplement that would help with the treatment of the vascular issues of my POTS symptoms. She chuckled as she explained that this supplement was commonly used in patients with erectile dysfunction. To sound professional she immediately went into explaining how the supplement worked on my vascular sytem and gave me a dose recommendation. When we hung up the phone I had to laugh, it seems that many of my medications I take have multi-purposes. I take an SSRI which is mostly used as an antidepressant for vascular issues and now this new supplement for erectile dysfunction which is also being used for vascular issues. I did my homework on the supplement, and the information from WebMd seemed to put a positive light to the supplement, so I decided it was worth a try. The good news is, it's been a week and a half on the new supplement, my body has not rejected it with it's common symptoms of nausea, vomiting or digestive tract issues. Though I am experiencing a strong desire to listen to old school '80's music and a craving for milk duds. On the positive side I'm experiencing less if no fatigue, and I seem to have more energy at the end of the day.I will consider this a victory if I continue to feel the same after three weeks. It makes me wonder how many other drugs are out there that are used for something else that they may find could help my condition. Maybe that anti-fungal pill might actually work on my nausea, who knows.
Always inspired,
Michele
Tuesday, August 24, 2010
Monday, August 16, 2010
Michael Jackson, Howard Hughes and Me!
What could I possibly have in common with Michael Jackson or Howard Hughes? It's definitely not the money or fame. I can't dance (though my inner diva sometimes believes I can) or design aircraft. The commonalities may seem illusive, but they're actually reclusive. All three of us have different reasons for choosing to be separated from society, each of us has made a conscious choice to be alone.
I should be disturbed by the fact that I don't have a problem with spending most of my time alone. It was only a few months ago that I wrote the blog "Friendship and Chronic Illness", where I seemed upset with my new lifestyle, where being alone was not a preference, but a byproduct of being chronically ill. Now being alone is as comfortable as a good book and my temperpedic bed.
The way I see it, being home is safe and easy. It's the one place I can control. If I need to put my feet up I can. If I'm hot I can turn on the air conditioning. If I'm hungry I can eat. It's quiet in my house and my kids enjoy the peace as well. It's a stress free environment. If I feel faint or nauseated, there's no one around to feel embarrassed about my condition. At home I can just deal with it with no explanations.
Going out has become work, and my constant brain fog has caused me to forget things like water to keep me hydrated on my trips out. I know I could make a check-off list, but to be honest I've kind of stopped caring. I'm like that diabetic teen who eats that candy just because they're tired of diabetes hanging over their head. I often feel trapped by the outside world. Yesterday I was sitting in church, the noise, getting up and down and the excitement level pushed my symptoms to veer its ugly head my way. But that's nothing compared to the feeling of sitting in a pew while my heart rate dips to 30 then followed by an annoying adrenaline rush that sends my heart rate soaring to 160. I can't leave or I might faint, all I want to do is lay down and wait for my heart to calm down. Now I know my dear friends would be fine with me laying down on the pew next to them, but most of the church is aware of my condition and I really, really don't want to bring attention to myself. At home I can lay down like a dead fish out of water and no one knows I'm floundering!
Reading a book, watching TV or sitting at my computer would have never been on the top of my free time list before POTS, but I've learned to settle for this almost reclusive lifestyle. I do have a few exceptions that seem to fit in my comfort zone. I have an amazing pair of friends who come to my house once a week for sharing and prayer, and a once a month card making night. I will continue to push myself to go to church, God calls for us to commune with one another and I know I can't do this alone. Now if I become a horder and my home unlivable and you don't see me for weeks, please do an intervention.
Always inspired,
Michele the hermit
I should be disturbed by the fact that I don't have a problem with spending most of my time alone. It was only a few months ago that I wrote the blog "Friendship and Chronic Illness", where I seemed upset with my new lifestyle, where being alone was not a preference, but a byproduct of being chronically ill. Now being alone is as comfortable as a good book and my temperpedic bed.
The way I see it, being home is safe and easy. It's the one place I can control. If I need to put my feet up I can. If I'm hot I can turn on the air conditioning. If I'm hungry I can eat. It's quiet in my house and my kids enjoy the peace as well. It's a stress free environment. If I feel faint or nauseated, there's no one around to feel embarrassed about my condition. At home I can just deal with it with no explanations.
Going out has become work, and my constant brain fog has caused me to forget things like water to keep me hydrated on my trips out. I know I could make a check-off list, but to be honest I've kind of stopped caring. I'm like that diabetic teen who eats that candy just because they're tired of diabetes hanging over their head. I often feel trapped by the outside world. Yesterday I was sitting in church, the noise, getting up and down and the excitement level pushed my symptoms to veer its ugly head my way. But that's nothing compared to the feeling of sitting in a pew while my heart rate dips to 30 then followed by an annoying adrenaline rush that sends my heart rate soaring to 160. I can't leave or I might faint, all I want to do is lay down and wait for my heart to calm down. Now I know my dear friends would be fine with me laying down on the pew next to them, but most of the church is aware of my condition and I really, really don't want to bring attention to myself. At home I can lay down like a dead fish out of water and no one knows I'm floundering!
Reading a book, watching TV or sitting at my computer would have never been on the top of my free time list before POTS, but I've learned to settle for this almost reclusive lifestyle. I do have a few exceptions that seem to fit in my comfort zone. I have an amazing pair of friends who come to my house once a week for sharing and prayer, and a once a month card making night. I will continue to push myself to go to church, God calls for us to commune with one another and I know I can't do this alone. Now if I become a horder and my home unlivable and you don't see me for weeks, please do an intervention.
Always inspired,
Michele the hermit
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