Dating.
I'm doing more of it now and am finding it hard to figure out when to bring up the eating thing. I'm inclined to just put it out there, but I don't know if I should just see how "normal" I can make it before having to say something. I just don't want guys thinking I'm being "dainty" or that I don't enjoy a good bourbon. I do! I did. I might be able to again, on a good night, when I haven't eaten a lot that day, and I have my meds. Maybe. I hate planning all this out! I hate that when a guy asks me where I want to go, I have to consider it carefully. It's depressing.
Sunday, September 26, 2010
well....
It's been awhile, and that usually means that things are going well. They are, or were, until I started running out of my Cisapride pills. I'm supposed to get more this week, but I've had to cut the dosage in half to make them last this long. I just took my last one tonight and I can only hope that I can get more tomorrow. You really don't notice just how much they help until you don't have them.
I can feel the old feelings and symptoms of a few months ago coming back. It's funny how you forget these things, even think that "well, it wasn't that bad". But it was, is. The shortness of breath, the pain, the constant state of discomfort and feeling like you just want to unzip your belly, the fatigue, god, the fatigue. No vomiting. Hopefully I can put that off and get the pills soon. I barely ate today. Tomorrow I'm aiming for soft/liquid diet, just so I can get through the day and have enough energy to work on things after work.
And then you worry. Because I've had some odd symptoms recently (fairly extreme shortness of breath, twitching in the extremities), I wonder if they'll refill my pills (it's a clinical trial). I need those pills. It makes me want to cry that I need those pills and to be so dependent on them. I don't want to go back to the way it was. All this, with just the remote possibility of not getting them. It's a good thing I have this blog. I really don't want to whine/complain about this anymore out loud.
I can feel the old feelings and symptoms of a few months ago coming back. It's funny how you forget these things, even think that "well, it wasn't that bad". But it was, is. The shortness of breath, the pain, the constant state of discomfort and feeling like you just want to unzip your belly, the fatigue, god, the fatigue. No vomiting. Hopefully I can put that off and get the pills soon. I barely ate today. Tomorrow I'm aiming for soft/liquid diet, just so I can get through the day and have enough energy to work on things after work.
And then you worry. Because I've had some odd symptoms recently (fairly extreme shortness of breath, twitching in the extremities), I wonder if they'll refill my pills (it's a clinical trial). I need those pills. It makes me want to cry that I need those pills and to be so dependent on them. I don't want to go back to the way it was. All this, with just the remote possibility of not getting them. It's a good thing I have this blog. I really don't want to whine/complain about this anymore out loud.
Thursday, July 8, 2010
overload & maintenance
I think I just OD'd on vitamins.
I was taking 1 tbsp of the Tropical Oasis liquid multi-vitamin, but went through it all. No adverse effects from that. So, I thought I'd try a different, more potent one that I've seen recommended. It was Alive! Whole Food Energizer. It said to take 2 tbsp, preferably with food. Well, I did....it took 30 seconds for me to break out into a sweat, feel like I had knives in my stomach, and to sink to the floor. A minute later, I had diarrhea. Nice, I know, but true. I laid on the floor of the bathroom for some time after before I felt able to move. I still don't feel good. Sick to my stomach, headache. I don't know if it's interacting with the cisapride, or I just can't handle that dosage. I'll try a 1/2 tbsp maybe, mixed in something, tomorrow. Anyone out there have this reaction to that vitamin?
As far as the Cisapride goes though, it seems to be working. I've gained 2 lbs, and need to start working out again. ;} heheh. I know it's ridiculous, but the no drinking thing is bothersome. Not that I need alcohol, but...well, it's the red wine I miss. I enjoy a small glass maybe once a week, and now I can't even do that. Ah well. Food or wine, I suppose. I'm going to inquire about this at my Dr visit on Monday.
Another fun development though. I've been having some pretty grand back/hip pain the past two weeks. The chiropractor tells me it could be coming out in full force due to the recent weight loss. I've always had bad shoulders and a nagging pain in my lower right back that would occasionally show up, but this has been rather constant. Doc also said that sometimes all this body karma catches up with you at once. Yeah, you said it.
As far as the GP goes though, with the Cisapride, I've been much better. I would recommend it to anyone who has a strong heart and low blood pressure. It took awhile to get it, and I have to go back fairly regularly for EKGs and blood work, but it's worth that just to be able to eat solid food on a regular basis and eat (slightly) more than a fist-sized portion of food at a time.
I was taking 1 tbsp of the Tropical Oasis liquid multi-vitamin, but went through it all. No adverse effects from that. So, I thought I'd try a different, more potent one that I've seen recommended. It was Alive! Whole Food Energizer. It said to take 2 tbsp, preferably with food. Well, I did....it took 30 seconds for me to break out into a sweat, feel like I had knives in my stomach, and to sink to the floor. A minute later, I had diarrhea. Nice, I know, but true. I laid on the floor of the bathroom for some time after before I felt able to move. I still don't feel good. Sick to my stomach, headache. I don't know if it's interacting with the cisapride, or I just can't handle that dosage. I'll try a 1/2 tbsp maybe, mixed in something, tomorrow. Anyone out there have this reaction to that vitamin?
As far as the Cisapride goes though, it seems to be working. I've gained 2 lbs, and need to start working out again. ;} heheh. I know it's ridiculous, but the no drinking thing is bothersome. Not that I need alcohol, but...well, it's the red wine I miss. I enjoy a small glass maybe once a week, and now I can't even do that. Ah well. Food or wine, I suppose. I'm going to inquire about this at my Dr visit on Monday.
Another fun development though. I've been having some pretty grand back/hip pain the past two weeks. The chiropractor tells me it could be coming out in full force due to the recent weight loss. I've always had bad shoulders and a nagging pain in my lower right back that would occasionally show up, but this has been rather constant. Doc also said that sometimes all this body karma catches up with you at once. Yeah, you said it.
As far as the GP goes though, with the Cisapride, I've been much better. I would recommend it to anyone who has a strong heart and low blood pressure. It took awhile to get it, and I have to go back fairly regularly for EKGs and blood work, but it's worth that just to be able to eat solid food on a regular basis and eat (slightly) more than a fist-sized portion of food at a time.
Sunday, June 13, 2010
A quick update....more later
Yesterday, I only took 2 pills. I figured since I'm supposed to avoid red wine, I could have one hard liquor drink. It was mostly ginger ale. About midway through the show I was watching I started feeling that old feeling of painful bloating, wanting to unzip my stomach, and this time, just more pain. I thought maybe I hadn't eaten enough that day and the alcohol and cisapride weren't mixing well. Ah, and I also had one very small glass of white (blech) wine at the show. So, maybe it was the white wine that did it. At any rate, on the way home, we stopped and I got something small to eat (fries, heh). I took two ibuprofen when we got to my friend's house.
Let me just say that last night was the first time I've experienced a solid pain from this and I'm not sure if it was the pills, not enough pills, the wine. But it seemed to radiate through my torso....like when you're on your period and your entire body aches, this was magnified by....hmm, 10? It wasn't unbearable, just hurt. This morning, I still don't feel 100%.
So, yeah, no more alcohol at all. In case that was the problem. I don't think the endometriosis had anything to do with it. My back and shoulders still ache fairly badly. I'm hoping a day in the sun will revive my stupid body.
Let me just say that last night was the first time I've experienced a solid pain from this and I'm not sure if it was the pills, not enough pills, the wine. But it seemed to radiate through my torso....like when you're on your period and your entire body aches, this was magnified by....hmm, 10? It wasn't unbearable, just hurt. This morning, I still don't feel 100%.
So, yeah, no more alcohol at all. In case that was the problem. I don't think the endometriosis had anything to do with it. My back and shoulders still ache fairly badly. I'm hoping a day in the sun will revive my stupid body.
Thursday, June 10, 2010
Cisapride: Day 1
Despite the scary warnings and the hoops you have to jump through to get it, so far this has been promising. I'm supposed to take one 30 mins before meals and then again at bedtime, but knowing how sensitive I am to pills, I've only taken one so far today. I'll take another at bedtime.
Even with one (10mg), I did notice that my heart was beating faster and that caused me some concern. I think it was because I only had a piece of toast and some coffee, but I'm not used to eating normally. I'm not even used to eating a lot of solid food. It may take some adjusting, but I don't think I'm going on a regular diet. I sort of like the small meals more frequently thing. The problem is the frequently part. Today I just kept forgetting to either take the pills with me or plan ahead for taking them. There was a lot of gurgling and hunger pains, so at least the pills seem to be working. By dinner I was famished and didn't want to wait 30 mins to eat.
So, yeah, so far so good. Don't think I can manage 4 pills in a day, so tomorrow we'll shoot for 3. Two during the day and one before bed. EKG on Tuesday to make sure the 'ol ticker is doing ok.
There are a few other side effects, but they seem to be beneficial. Cleared up the constipation, but maybe a little too much. We'll see how well tomorrow goes.
Even with one (10mg), I did notice that my heart was beating faster and that caused me some concern. I think it was because I only had a piece of toast and some coffee, but I'm not used to eating normally. I'm not even used to eating a lot of solid food. It may take some adjusting, but I don't think I'm going on a regular diet. I sort of like the small meals more frequently thing. The problem is the frequently part. Today I just kept forgetting to either take the pills with me or plan ahead for taking them. There was a lot of gurgling and hunger pains, so at least the pills seem to be working. By dinner I was famished and didn't want to wait 30 mins to eat.
So, yeah, so far so good. Don't think I can manage 4 pills in a day, so tomorrow we'll shoot for 3. Two during the day and one before bed. EKG on Tuesday to make sure the 'ol ticker is doing ok.
There are a few other side effects, but they seem to be beneficial. Cleared up the constipation, but maybe a little too much. We'll see how well tomorrow goes.
Wednesday, May 19, 2010
the return: an update
Things were going pretty good there for a few weeks, so that was nice. Tonight marks a vivid return to very small meals and mostly pureed/liquids. Does anyone else out there have trouble with Ensure? It's not so much anything in it as the consistency I think. I can't seem to drink a whole one all at once since I just get full and bloated almost immediately. The vitamin issue persists.
And because I thought I was doing ok, I had a multi-vitamin pill. I had eaten (mashed potatoes, pureed peas. woo!) so I figured it wouldn't sit in an almost empty stomach. Within 5-10 mins I was sick. Drinking ginger ale and trying not to move so I can keep it down.
I had surgery last week for what was supposed to be an ovarian cyst removal and turned out to be widespread endometriosis. After the pain went away, and I got a little vacation from work, I was feeling really good, positive, motivated. I thought it was the break that did it, but now I'm thinking it was the fact that I hadn't felt nauseous or incapacitated for a couple weeks. But I remember this, I remember not being able to do what I want to do, the painful manifestations, and trying not to throw up. Yes, I remember this.
Also, it has come to my attention that Idiopathic GP will no longer be acknowledged by Medicare for FY2011. While this doesn't directly affect me, it is indicative to the lack of understanding and care about people who suffer from this. And let's face it, should I ever lose my job and my health insurance and have to be on Medicaid, I would be screwed, pre-existing condition issue notwithstanding. I do plan on writing to Ms. Sebelius (I campaigned for her way back when I was in high school and she was running for Insurance Commissioner AND I've worked for Medicare) and any other representative and urge anyone reading this to do the same. It's bad enough that this is relatively untreatable, but to take away the right to even attempt to make it better is ridiculous.
"a. Unacceptable Principal Diagnosis Edit: Addition of Code for Gastroparesis
It has been brought to our attention that code 536.3 (Gastroparesis) has a “code
first underlying disease” note. This note indicates that code 536.3 should not be used as a
principal diagnosis. Therefore, code 536.3 should have been included on the list of
unacceptable principal diagnoses in the MCE. We agree that code 536.3 should have been included on the list of unacceptable principal diagnoses in the MCE. Therefore, for FY 2011, we intend to add code 536.3 to that list."
Found here: http://www.kslaw.com/Library/publication/HH042610_Rule.pdf
Contact your reps: http://www.usa.gov/Contact/Elected.shtml
And because I thought I was doing ok, I had a multi-vitamin pill. I had eaten (mashed potatoes, pureed peas. woo!) so I figured it wouldn't sit in an almost empty stomach. Within 5-10 mins I was sick. Drinking ginger ale and trying not to move so I can keep it down.
I had surgery last week for what was supposed to be an ovarian cyst removal and turned out to be widespread endometriosis. After the pain went away, and I got a little vacation from work, I was feeling really good, positive, motivated. I thought it was the break that did it, but now I'm thinking it was the fact that I hadn't felt nauseous or incapacitated for a couple weeks. But I remember this, I remember not being able to do what I want to do, the painful manifestations, and trying not to throw up. Yes, I remember this.
Also, it has come to my attention that Idiopathic GP will no longer be acknowledged by Medicare for FY2011. While this doesn't directly affect me, it is indicative to the lack of understanding and care about people who suffer from this. And let's face it, should I ever lose my job and my health insurance and have to be on Medicaid, I would be screwed, pre-existing condition issue notwithstanding. I do plan on writing to Ms. Sebelius (I campaigned for her way back when I was in high school and she was running for Insurance Commissioner AND I've worked for Medicare) and any other representative and urge anyone reading this to do the same. It's bad enough that this is relatively untreatable, but to take away the right to even attempt to make it better is ridiculous.
"a. Unacceptable Principal Diagnosis Edit: Addition of Code for Gastroparesis
It has been brought to our attention that code 536.3 (Gastroparesis) has a “code
first underlying disease” note. This note indicates that code 536.3 should not be used as a
principal diagnosis. Therefore, code 536.3 should have been included on the list of
unacceptable principal diagnoses in the MCE. We agree that code 536.3 should have been included on the list of unacceptable principal diagnoses in the MCE. Therefore, for FY 2011, we intend to add code 536.3 to that list."
Found here: http://www.kslaw.com/Library/publication/HH042610_Rule.pdf
Contact your reps: http://www.usa.gov/Contact/Elected.shtml
Saturday, May 1, 2010
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