Woke up this morning surprisingly awake. Not energized but ready to get up and get ready for class. I started out the day feeling pretty good. I was only slightly nauseated and I was in the beginning stages of a sore throat. My day quickly started to decline as I sat in class and my nausea started to overwhelm me. I made it through one class (which was big as it has been a few days since I have been to class), chapel, and then decided to skip my music history class as I felt like I was going to pass out at any moment. I went straight to my dorm, got in bed, and turned on my electric heater mattress pad (thanks Grandma). I slept for about 4 hours. I felt so much better after that amazing nap =]
Tomorrow me and some of my new friends are heading downtown for some photo shoot fun! I am super excited and can't wait to try out my new camera but I do have some concerns. What if I get sick while we're out tomorrow? What am I supposed to say? What am I ever supposed to say? I know talking about POTS is inevitable but I always dread that conversation. What to say, what not to say...what will they actually understand? I hate being the depressing one of the group but I'm sure if the subject doesn't come up tomorrow it will soon enough. When that day comes all I can do is smile and explain that I'm faulty =]
Friday, February 18, 2011
Wednesday, February 16, 2011
...my nightmare just came true.
Today was another potsy day. I have tried to keep my thoughts from going straight to the idea that I'm having another 'relap' of sorts but it still finds it way. As a music major I have to practice singing for at least 7 hours a week which gets quite difficult when I am in nauseated/passing out mode. Maybe God is beginning to show me I need to pick a new career. None of my friends here really understand POTS yet and I'm almost dreading those conversations. How many more times will I have to explain my unexplainable illness?
I don't mind talking about it, it's just that my inability to know how much information is too much information coupled with my ability to talk about this life changing illness like I'm explaining the Pythagorean theorem equals one uncomfortable conversation. Usually I get the whole "Oh my word, that's horrible" and me being who I am along with being able to distance myself from POTS while talking about it usually answers back "It's not that bad". I don't want people to pity me and I hate being the depressing one in the group, no one likes to be the one to bring an entire conversation to a stand still and complete silence, but I do want them to know how it really affects me. Granted my POTS is not as bad as some and I do have good days but the fact is that the majority of my days are not great and POTS really isn't fun at all.
I've tried so hard to be okay with having POTS and in theory I am. I oddly like the fact that I have a relatively rare illness, or rather I like being different but when people give you the 'that-girl-must-be-terminally-ill' look POTS gets real old real fast. I don't remember what it was like to be normal. What it was like before POTS. And I'm finally beginning to realize that even if this illness decides to go into remission it can come back at anytime without warning. So maybe going back to the time when I expected to have POTS for life is really the safer option than hoping to live without it. I had finally begun to believe that maybe I would only have a few years left of this insanity but the fact of the matter is I have Postural Orthostatic Tachycardia Syndrome and I need to forget about getting better and continue to learn how to cope...
Who knew that evil doctor's words that drove both me and my father to tears would be said by me almost 5 years later. Learn to cope, learn to cope, learn to cope...my nightmare just came true.
I don't mind talking about it, it's just that my inability to know how much information is too much information coupled with my ability to talk about this life changing illness like I'm explaining the Pythagorean theorem equals one uncomfortable conversation. Usually I get the whole "Oh my word, that's horrible" and me being who I am along with being able to distance myself from POTS while talking about it usually answers back "It's not that bad". I don't want people to pity me and I hate being the depressing one in the group, no one likes to be the one to bring an entire conversation to a stand still and complete silence, but I do want them to know how it really affects me. Granted my POTS is not as bad as some and I do have good days but the fact is that the majority of my days are not great and POTS really isn't fun at all.
I've tried so hard to be okay with having POTS and in theory I am. I oddly like the fact that I have a relatively rare illness, or rather I like being different but when people give you the 'that-girl-must-be-terminally-ill' look POTS gets real old real fast. I don't remember what it was like to be normal. What it was like before POTS. And I'm finally beginning to realize that even if this illness decides to go into remission it can come back at anytime without warning. So maybe going back to the time when I expected to have POTS for life is really the safer option than hoping to live without it. I had finally begun to believe that maybe I would only have a few years left of this insanity but the fact of the matter is I have Postural Orthostatic Tachycardia Syndrome and I need to forget about getting better and continue to learn how to cope...
Who knew that evil doctor's words that drove both me and my father to tears would be said by me almost 5 years later. Learn to cope, learn to cope, learn to cope...my nightmare just came true.
Tuesday, February 15, 2011
Bump in the road...
School has been going really well so far. I'm starting to struggle to stay focused on my school work but I love being in the classroom once again. My POTS has been doing pretty good overall. I've had some relatively bad days but for the most parts it has come and gone in waves through out the day.
I just recently discovered while trying to refill a perscription for Zofran that my new insurance company has decided to stop covering this amazing drug. To say I was upset would have been an understatment. This single drug quite literally got me through school this past year and it scares me to think that I might be headed down that oh too familiar path to unmanagable nausea. Dispite the dilligent work of my mother and doctor's office the insurance company has not budged from their desision to uproot my life.
I am currently in contact with both my POTS doctor and my primary care physician to work on possibly finding a different drug that can manage my nausea but it's not looking to good at this point. I have been taking ginger root capsules which have been known to treat nausea. It's hard to tell at this point whether or not they are actually working but I hope and pray they will relieve me from my nausea. Although this has been quite stressful and frusterating I have resolved to leave the results up to God and let Him figure out this mess modern insurance has created. I know there must be a reason for this inconvienece and I am anxious for God to let me in on the secret.
I just recently discovered while trying to refill a perscription for Zofran that my new insurance company has decided to stop covering this amazing drug. To say I was upset would have been an understatment. This single drug quite literally got me through school this past year and it scares me to think that I might be headed down that oh too familiar path to unmanagable nausea. Dispite the dilligent work of my mother and doctor's office the insurance company has not budged from their desision to uproot my life.
I am currently in contact with both my POTS doctor and my primary care physician to work on possibly finding a different drug that can manage my nausea but it's not looking to good at this point. I have been taking ginger root capsules which have been known to treat nausea. It's hard to tell at this point whether or not they are actually working but I hope and pray they will relieve me from my nausea. Although this has been quite stressful and frusterating I have resolved to leave the results up to God and let Him figure out this mess modern insurance has created. I know there must be a reason for this inconvienece and I am anxious for God to let me in on the secret.
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