Liquids: Not great. 5 cups maybe. Have to do better tomorrow.
Diet: Nutella on bread, cheddar rice cakes, chicken, mac and cheese, misc halloween candy
Florinef: taken
Cons: migraine, nausea this morning
Pros: being able to go out for a longer time than usual
Wednesday, November 3, 2010
Tuesday, November 2, 2010
day 2
Liquids: about 6 cups. Not bad.
Diet: half onion bagel with cream cheese, steak, pretzels, half hamburger, potato pancakes, leftover halloween candy
Florinef: taken
How I feel...
Pros: This morning, I felt AWESOME. Much better than I have in over a year. I went out to vote, and walked in the cold and didn't have any palpitations! I speed walked, and didn't get short of breath or have my arrhythmia. I washed my hair without my arms going numb!
Cons: Towards the middle of the day, I started to have bad indigestion again- I hope that goes away. I also got very run down, and after eating dinner had a very upset stomach and a headache all night. They say most side effects wear off after a week, so I'm hoping.
Diet: half onion bagel with cream cheese, steak, pretzels, half hamburger, potato pancakes, leftover halloween candy
Florinef: taken
How I feel...
Pros: This morning, I felt AWESOME. Much better than I have in over a year. I went out to vote, and walked in the cold and didn't have any palpitations! I speed walked, and didn't get short of breath or have my arrhythmia. I washed my hair without my arms going numb!
Cons: Towards the middle of the day, I started to have bad indigestion again- I hope that goes away. I also got very run down, and after eating dinner had a very upset stomach and a headache all night. They say most side effects wear off after a week, so I'm hoping.
day 1
Diet:
Liquids: 7-8 cups. About half a gallon, almost 2 Liters which is what I'm supposed to be drinking so that's good.
Food: Pancakes, potato with sour cream/cheese/bacon bits, steak (made even more delicious because I won it in a bet), popcorn, various snacks.
Florinef: taken- first day!
Negative Side Effects:
- I could tell when my body absorbed it- it gave me a weird rush, almost like having a CT scan done (if you've never had one, I can't explain it)- almost like getting a saline drip where you can feel it run through your body in a cold wave.
- sharp pain in my shoulder, I don't know if this was from an injury, or not as aches and pain are a side effect
- headache...mostly in one spot, made me a little nervous but I didn't want to overwhelm my body by taking motrin too
- indigestion, pretty bad actually
- chills
Positive Side Effects:
- no intense heart pounding when I stand up
- increased appetite? (maybe, it's hard to tell- I have a couple of hungry days now and then, so it might not have anything to do with this)
- no intense vomiting feeling immediately following eating
Overall Opinion: Pending. I like not having my heart pound constantly, but I am verrrry achey and the indigestion is pretty rough so we'll see.
Liquids: 7-8 cups. About half a gallon, almost 2 Liters which is what I'm supposed to be drinking so that's good.
Food: Pancakes, potato with sour cream/cheese/bacon bits, steak (made even more delicious because I won it in a bet), popcorn, various snacks.
Florinef: taken- first day!
Negative Side Effects:
- I could tell when my body absorbed it- it gave me a weird rush, almost like having a CT scan done (if you've never had one, I can't explain it)- almost like getting a saline drip where you can feel it run through your body in a cold wave.
- sharp pain in my shoulder, I don't know if this was from an injury, or not as aches and pain are a side effect
- headache...mostly in one spot, made me a little nervous but I didn't want to overwhelm my body by taking motrin too
- indigestion, pretty bad actually
- chills
Positive Side Effects:
- no intense heart pounding when I stand up
- increased appetite? (maybe, it's hard to tell- I have a couple of hungry days now and then, so it might not have anything to do with this)
- no intense vomiting feeling immediately following eating
Overall Opinion: Pending. I like not having my heart pound constantly, but I am verrrry achey and the indigestion is pretty rough so we'll see.
Monday, November 1, 2010
change of pace
I had an idea today to use this as more-or-less a journal (which is basically is) to record how I do on a day-to-day basis with the drug trial(s) I'm starting. I have to be on Florinef for a month, and then go back to the doctor- by that time, I probably won't remember what things were really like over the course of the month- so why not write it down? Worth a shot at least lol
Thursday, October 28, 2010
another crossroads
I went to the doctors on Friday and am going to start a drug regimen. We'll see.
I'm undecided whether to document this, or just delete this blog all together.
I'm undecided whether to document this, or just delete this blog all together.
Sunday, September 12, 2010
disappointed
*sigh* So, I found this really great dietitian who seemed like an awesome guy. He filled me with hope because he said he was going to contact other people who knew more about my condition as well as doing research on his own. I've tried to get a hold of him for a couple of weeks now...nothing.
His original suggestion was to graze...which is weird and I'm having a hard time doing it. But, even when I do manage to graze all day, I don't feel any better. It doesn't regulate my blood pressure any better, and I'm getting very depressed with it. Apparently no one wants to help me deal with this drug-free (although, I honestly am coming around to the fact that it truly can't be 100% drug free. Even when I consistently follow the diet I'm supposed to, it's still hard to get up without almost passing out. I have to take a break getting up stairs because my heart pounds- it's just...way too far passed that point.)
So, I just don't know.
At the moment, it's not all bad. Considering all of the stress I'm under I've still managed to gain 1lb. which isn't much, but normally I stop eating and lose weight. So, to gain is phenomenal. I'm up to 95lbs. Up 8lbs in a year. that's not bad
His original suggestion was to graze...which is weird and I'm having a hard time doing it. But, even when I do manage to graze all day, I don't feel any better. It doesn't regulate my blood pressure any better, and I'm getting very depressed with it. Apparently no one wants to help me deal with this drug-free (although, I honestly am coming around to the fact that it truly can't be 100% drug free. Even when I consistently follow the diet I'm supposed to, it's still hard to get up without almost passing out. I have to take a break getting up stairs because my heart pounds- it's just...way too far passed that point.)
So, I just don't know.
At the moment, it's not all bad. Considering all of the stress I'm under I've still managed to gain 1lb. which isn't much, but normally I stop eating and lose weight. So, to gain is phenomenal. I'm up to 95lbs. Up 8lbs in a year. that's not bad
Tuesday, August 24, 2010
small update
there's been a lot going on, and i'm not ready to update yet. but i thought i'd do a small one in case anyone was interested.
i met with a new dietitian, he seems like a very nice and knowledgeable man. i'm working on a new tip that he gave me: to graze all day and stop eating meals. i didn't think it would be difficult but it is- very. you don't realize how well you've been trained to eat meals until they're trying to make you stop eating them. he's going to try and find some specialists who have worked with other POTS patients, to see if there's any other kind of help they can give me.
i met with a new dietitian, he seems like a very nice and knowledgeable man. i'm working on a new tip that he gave me: to graze all day and stop eating meals. i didn't think it would be difficult but it is- very. you don't realize how well you've been trained to eat meals until they're trying to make you stop eating them. he's going to try and find some specialists who have worked with other POTS patients, to see if there's any other kind of help they can give me.
Subscribe to:
Posts (Atom)