No, this isn't a vacation. I don't wish to be living like this. I want nothing more than to have my life back, to have my body stop betraying me, to be able to be a normal 26 year old again. This isn't fun for me. I have a disease that is incurable, unpredictable, and disabling. No its not something that you can see, but that doesn't mean that it isn't there. I have good days and bad days. But the fact is, I have barely left my room, much less the house in the past few months. When I do get out, more often than not, I need to go home before I want because I feel so bad. I don't like hearing friends telling me about all the fun things they're doing out in the world while all I can do is sit in bed sipping ginger ale to help my stomach and watching reruns of Bones on Hulu because there isn't anything else I can do. Its not a vacation when you are put through countless medical tests in an attempt to make you better, most of which being uncomfortable and unpleasant. Its not a vacation when on a good day your pain is at a 3, you only feel like you're going to pass out a few times, and you manage to stand for a whole grocery or restaurant trip before collapsing in bed to recover. I feel like the time in my life is flying by, while I'm stuck in place. I have been missing out on things and falling behind for two years. I want to catch up. I want to be working, I loved my job. I want to be in school, I really was doing well and enjoying my classes. I want to go out with my friends. I want to be me again. I want this to all stop. So no, this is not a vacation.
Monday, September 26, 2011
Frustrations
Today when I explained to an acquaintance why I wasn't working or going to school, he said something that threw me for a loop. He said "oh, so you're basically on an extended vacation?" I didn't know what to say...
Saturday, September 10, 2011
Hurricanes, and earthquakes, and NOLA! Oh My!
So I know its been a while since I posted anything. I went on a vacation, came back, got the house ready for out of town visitors (who never made it), got the house ready for a hurricane (that did make it), catching up with friends, and have very little to report other than that.
I went to New Orleans to visit my family. It was a great, very relaxing visit. Lots of floating in my Nannan's pool and sitting around a table and chatting. One not so surprising benefit of the trip is that all the salty NOLA food raised my BP enough that I didn't need my mitodrine! Unfortunately, since coming back, I have had to go back on it though. The drive to and from NOLA wasn't as bad as I had thought it would be. My sister and I split the driving, with her taking the bulk of it. We spread the 26 hour trip into 3 days, with plenty of stops. I made sure that I drank a TON of water and gatorade pouches, ate salty food, and kept my protein up, and it was fine. To those of you with POTS who were like me and afraid to take a road trip, I would suggest you try it, just be prepared. You know your body, you know what it needs, but staying close to home all the time out of fear is no way to live.
On the trip, I discovered that my sunscreen allergy was indeed real, as may be allergies to berries and bananas. I saw an allergist who is doing tests to see. He said that new and worsened allergies are a normal part of dysautonomia since the autonomic nervous system controls it all somehow. Oh good, one more thing to add to the list of malfunctioning parts. :op
After NOLA, we got home to a messy (post trip packing) house that needed to be cleaned for a visit from two relatives. It took us 3 days to make the house clean enough to be acceptable, and then Hurricane Irene decided to hit us. We stocked up on the typical items (batteries, food, water in tupperware containers, flashlights, and prescriptions), and prepared to hunker down through the storm. Needless to say, the relatives who were set to visit didn't make it here, they stayed where they were. In the storm, we lost a tree, and had yard flooding, but were very lucky that nothing worse happened. At one point, the storm was so bad that my mom had us go pack bags for a shelter if we needed to leave. At another point, there was a tornado warning for our area, so we all sat in the basement stairwell with our dog for 45 minutes. It was scary, but nothing horrible.
After the hurricane, I spent some time just me, alone, in my room. I didn't feel well, didn't want to go out, be social, or anything else. Probably depression had something to do with it. It is very easy to get discouraged with POTS, your body dictates your life and limits the things you can do with it. I get very frustrated by the new limitations my body has set for me. While I am doing much better than I was last summer, I still can't lift heavy objects, do any kind of cardio, or stand for too long. But my Mom got me out of bed a few times, luring me with dinners at my favorite restaurants or visits to craft stores. My friend Camo got me to go to a small faire with him and his two daughters, it was a great time! I did have a little bit of trouble keeping up, and at one point, I felt faint, but I took a pill, drank some more water, and the feeling went away. After the faire, we went to a little vegan chinese buffet that surprised me. It was really good! I'm still new to the whole vegan food thing, so the idea of eating a meatball with no meat, or sweet and sour tofu still throws me off a bit. But I have found that more often than not, I enjoy the meat alternatives if they're not overcooked. I am also noticing that with the vegetarian diet, by bp stays higher and I feel slightly healthier. While I had a great time out, a full day with two very excited kids in 80 degree heat was about all I could do. My bed was oh so welcoming when I got home, I slept for 14 hours straight! The day before yesterday I went to another friend's house for a craft night. I had to cut out fabric for my sister, and she was drawing for her upcoming art show. I was over there for a while, and once 9pm rolled around, I was starting to get tired, I should have left then, but I waited until after she and I made dessert (my chocolate crescent rolls from my food blog). By the time I left, it was 10pm. I didn't realize the road home was under construction at night, and so I ended up being put on a detour that led me all around the city in a roundabout way, and didn't have a clue where I was. I finally made it home around 11, and really shouldn't have still been on the road, lesson learned, leave when I start getting tired.
For 7 weeks now, I've had a sinus infection that won't go away. I've been on 6 weeks of antibiotics, 3 weeks of prednisone, and countless sinus pills. My allergist and GP seem to think it may be a fungal infection, I hope not, that would mean surgery. I have gotten the all clear to go back to work, but not until I get the sinus condition out of the way, so I'm really hoping its going to go away. I have a CT in 2 weeks when I'm done with this round of antibiotics, so we'll see. Crossing my fingers that I can go back to work in October! Wish me luck!
On the trip, I discovered that my sunscreen allergy was indeed real, as may be allergies to berries and bananas. I saw an allergist who is doing tests to see. He said that new and worsened allergies are a normal part of dysautonomia since the autonomic nervous system controls it all somehow. Oh good, one more thing to add to the list of malfunctioning parts. :op
After NOLA, we got home to a messy (post trip packing) house that needed to be cleaned for a visit from two relatives. It took us 3 days to make the house clean enough to be acceptable, and then Hurricane Irene decided to hit us. We stocked up on the typical items (batteries, food, water in tupperware containers, flashlights, and prescriptions), and prepared to hunker down through the storm. Needless to say, the relatives who were set to visit didn't make it here, they stayed where they were. In the storm, we lost a tree, and had yard flooding, but were very lucky that nothing worse happened. At one point, the storm was so bad that my mom had us go pack bags for a shelter if we needed to leave. At another point, there was a tornado warning for our area, so we all sat in the basement stairwell with our dog for 45 minutes. It was scary, but nothing horrible.
After the hurricane, I spent some time just me, alone, in my room. I didn't feel well, didn't want to go out, be social, or anything else. Probably depression had something to do with it. It is very easy to get discouraged with POTS, your body dictates your life and limits the things you can do with it. I get very frustrated by the new limitations my body has set for me. While I am doing much better than I was last summer, I still can't lift heavy objects, do any kind of cardio, or stand for too long. But my Mom got me out of bed a few times, luring me with dinners at my favorite restaurants or visits to craft stores. My friend Camo got me to go to a small faire with him and his two daughters, it was a great time! I did have a little bit of trouble keeping up, and at one point, I felt faint, but I took a pill, drank some more water, and the feeling went away. After the faire, we went to a little vegan chinese buffet that surprised me. It was really good! I'm still new to the whole vegan food thing, so the idea of eating a meatball with no meat, or sweet and sour tofu still throws me off a bit. But I have found that more often than not, I enjoy the meat alternatives if they're not overcooked. I am also noticing that with the vegetarian diet, by bp stays higher and I feel slightly healthier. While I had a great time out, a full day with two very excited kids in 80 degree heat was about all I could do. My bed was oh so welcoming when I got home, I slept for 14 hours straight! The day before yesterday I went to another friend's house for a craft night. I had to cut out fabric for my sister, and she was drawing for her upcoming art show. I was over there for a while, and once 9pm rolled around, I was starting to get tired, I should have left then, but I waited until after she and I made dessert (my chocolate crescent rolls from my food blog). By the time I left, it was 10pm. I didn't realize the road home was under construction at night, and so I ended up being put on a detour that led me all around the city in a roundabout way, and didn't have a clue where I was. I finally made it home around 11, and really shouldn't have still been on the road, lesson learned, leave when I start getting tired.For 7 weeks now, I've had a sinus infection that won't go away. I've been on 6 weeks of antibiotics, 3 weeks of prednisone, and countless sinus pills. My allergist and GP seem to think it may be a fungal infection, I hope not, that would mean surgery. I have gotten the all clear to go back to work, but not until I get the sinus condition out of the way, so I'm really hoping its going to go away. I have a CT in 2 weeks when I'm done with this round of antibiotics, so we'll see. Crossing my fingers that I can go back to work in October! Wish me luck!
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