This is gonna be short. I thought I'd be posting a long one today, because I was expecting more to happen, but it didn't. So, here we go.
Yesterday I had therapy. Spent most of my session talking about my past and showing off old pictures of my family. It was nice. It was a happy and sad nostalgic session at the same time... I like remembering things but then again it really sucks because I can't go back to that. I miss how close my family used to be.
Anyway. After that John decided he wanted a McFlurry, so we went to McDonald's. Do you see what's coming? Yeah. Of course I had to have a happy meal and John just can't say no. I ended up eating a few fries and the apple slices. Big. Mistake. I went to bed at like 7, woke up a couple times to go to the bathroom, and then I suddenly had to vomit at around 9 this morning. Let me tell you, it is NOT FUN throwing up apples that haven't been digested. This was even worse than the pickle incident. Very painful.
But I felt better after it was all over.
You would think I'd learn a lesson from this, but oh, no.
We'll get back to that in a minute. I had my appointment with the clinical pharmacist today to talk about my TPN. This is where it gets short. I don't think much was established besides my concerns and what I wanted from her. She basically asked me about my current meds and whatnot, and didn't really suggest anything. I'm going to try melatonin again for my sleeping issues. She gave me prescription tylenol because she saw that I had midol PM. So we'll see how that goes. I think I'd prefer to continue taking my midol though because the PM helps me sleep. Whatever. Anyway, my TPN wasn't discussed much. Which kind of pissed me off because we kept bringing it up. It seems like no one has any idea what to do when it comes to TPN.
And I may be wrong for this, but I felt like I was being judged in there. I'm probably over thinking it, like I do with everything else. But I mean, I was in there with a giant bag of different medications, some being OTC pain relievers, and she kept looking at me as if I was an addict.
I'm just having a really tough day and I don't feel like being fucked with.
Now back to learning a lesson. I don't think I'll ever learn. I just made John two bacon/egg/cheese sandwiches for his dinner, cut one in half and ate half. I'm not bloated, not nauseous. But I just KNOW, tomorrow morning is going to absolutely suck for me.
Cheers.
Showing posts with label gastroparesis. Show all posts
Showing posts with label gastroparesis. Show all posts
Wednesday, March 20, 2013
Wednesday, March 6, 2013
A Post of Importance... Kind of.
Today was a pretty big day for me. I didn't have too many appointments, but the one I did have was definitely an important one. I'd been waiting for this one for a while, thanks to the military and their stupid scheduling system, I have to make my appointments months in advance, so it's always a waiting game. Anyway, said appointment wasn't until 1510, so let's just back up a bit.
I woke up at 1030, still sleepy, of course. I was expecting the ThriveRx ladies to come by soon, so I couldn't go back to bed after I unhooked. They got here at around 1130 or so, and we discussed my history and my condition, my TPN options, etc. We also talked about Thrive and what they do, and I'm very interested in switching from Amerita to ThriveRx. They were extremely helpful and nice and I still can't believe they came from Denver for free to see me. They suggested something to add to my TPN that could possibly help me with my weight, but of course I forgot what they said, so I'll have to add that in later. *facepalm*
*UPDATE!*
The thing they wanted to look into is called Carnitine.
(Carnitine plays a critical role in energy production. It transports long-chain fatty acids into the mitochondria so they can be oxidized ("burned") to produce energy. It also transports the toxic compounds generated out of this cellular organelle to prevent their accumulation. Given these key functions, carnitine is concentrated in tissues like skeletal and cardiac muscle that utilize fatty acids as a dietary fuel. The body makes sufficient carnitine to meet the needs of most people. For genetic or medical reasons, some individuals (such as preterm infants), cannot make enough, so for them carnitine is a conditionally essential nutrient)
They left at like 1300, and then I had to get ready to go to Evans for our appointments. John had one at 1400, so I had to go with him. I waited for his doc with him until around 1445, then headed to my GI appointment by myself. I never have to wait too long for my GI appointments, so it wasn't too bad. And John was able to come to my appointment with me for the first time in forever for GI, so that was nice.
My GI doctor is Dr. Peter McNally, and he's pretty well-known across the country. I'm very lucky to have such a thorough and intelligent GI doc. We talked about how my symptoms were doing and whether the Xifaxan he prescribed me last month worked at all (it didn't), and we decided to try Flagyl this time to see how I do on that. He suggested I look into getting what's called a "bedge" which is a foam pillow-like thing that's wedge-shaped; it's supposed to help with GERD and acid reflux by keeping you elevated. We discussed my appointment with Hirano I had in New York, and he seemed pretty disappointed at how that went (same here, doc) but accepted the prognosis. When I asked him about having a G-tube placed, and explained that I knew the risks but I felt like it would help me, he told me he can see how I would benefit from it, but because of all the surgeries I have had, he wouldn't want to go that route unless I went in for surgery again. So basically, a G-tube will not be placed unless I absolutely have to be cut open again. Which is totally understandable, and that answer is much better than what Dr. Jung told me. At least McNally explained WHY. He also said that option would definitely be something to look into if it comes to surgery again.
After that appointment we went to see my case manager, Johelen, to tell her about ThriveRx and see what she could do about helping us switch, and to see if we could get Tricare to cover a "bedge"... Hopefully it works out with Thrive, because they seem much more knowledgeable about everything and much more efficient as far as supplies and TPN goes, so I would really REALLY rather have them as my infusion company. As for the "bedge" I don't know if Tricare will cover that, but it's worth a shot. May as well ask, right?
So that was today. Friday I have my iron infusion, so I'll have to hook up my TPN a few hours early the night before. Have to be at the cancer center at 0830 and I'll be there for about 5 hours for the infusion. Yay. Thank goodness I don't have anything tomorrow. I just want to take a day to sleep.
I woke up at 1030, still sleepy, of course. I was expecting the ThriveRx ladies to come by soon, so I couldn't go back to bed after I unhooked. They got here at around 1130 or so, and we discussed my history and my condition, my TPN options, etc. We also talked about Thrive and what they do, and I'm very interested in switching from Amerita to ThriveRx. They were extremely helpful and nice and I still can't believe they came from Denver for free to see me. They suggested something to add to my TPN that could possibly help me with my weight, but of course I forgot what they said, so I'll have to add that in later. *facepalm*
*UPDATE!*
The thing they wanted to look into is called Carnitine.
(Carnitine plays a critical role in energy production. It transports long-chain fatty acids into the mitochondria so they can be oxidized ("burned") to produce energy. It also transports the toxic compounds generated out of this cellular organelle to prevent their accumulation. Given these key functions, carnitine is concentrated in tissues like skeletal and cardiac muscle that utilize fatty acids as a dietary fuel. The body makes sufficient carnitine to meet the needs of most people. For genetic or medical reasons, some individuals (such as preterm infants), cannot make enough, so for them carnitine is a conditionally essential nutrient)
They left at like 1300, and then I had to get ready to go to Evans for our appointments. John had one at 1400, so I had to go with him. I waited for his doc with him until around 1445, then headed to my GI appointment by myself. I never have to wait too long for my GI appointments, so it wasn't too bad. And John was able to come to my appointment with me for the first time in forever for GI, so that was nice.
My GI doctor is Dr. Peter McNally, and he's pretty well-known across the country. I'm very lucky to have such a thorough and intelligent GI doc. We talked about how my symptoms were doing and whether the Xifaxan he prescribed me last month worked at all (it didn't), and we decided to try Flagyl this time to see how I do on that. He suggested I look into getting what's called a "bedge" which is a foam pillow-like thing that's wedge-shaped; it's supposed to help with GERD and acid reflux by keeping you elevated. We discussed my appointment with Hirano I had in New York, and he seemed pretty disappointed at how that went (same here, doc) but accepted the prognosis. When I asked him about having a G-tube placed, and explained that I knew the risks but I felt like it would help me, he told me he can see how I would benefit from it, but because of all the surgeries I have had, he wouldn't want to go that route unless I went in for surgery again. So basically, a G-tube will not be placed unless I absolutely have to be cut open again. Which is totally understandable, and that answer is much better than what Dr. Jung told me. At least McNally explained WHY. He also said that option would definitely be something to look into if it comes to surgery again.
After that appointment we went to see my case manager, Johelen, to tell her about ThriveRx and see what she could do about helping us switch, and to see if we could get Tricare to cover a "bedge"... Hopefully it works out with Thrive, because they seem much more knowledgeable about everything and much more efficient as far as supplies and TPN goes, so I would really REALLY rather have them as my infusion company. As for the "bedge" I don't know if Tricare will cover that, but it's worth a shot. May as well ask, right?
So that was today. Friday I have my iron infusion, so I'll have to hook up my TPN a few hours early the night before. Have to be at the cancer center at 0830 and I'll be there for about 5 hours for the infusion. Yay. Thank goodness I don't have anything tomorrow. I just want to take a day to sleep.
Monday, March 4, 2013
What even.
Well! Today was eventful. Not necessarily in a good way.
Last night I tried eating some bread. Not a great idea on my part. I was nauseous the entire rest of the night and this morning. I tried to sleep after I unhooked my TPN until noonish, but ended up just tossing and turning and checking my accounts. We left for my hematology appointment at around 12:30, I'm bloated, nauseous, and in pain.
About half-way to my appointment, on the interstate, it all starts to come back up. I ask John quickly if he has a bag, he says no, asks me if he needs to pull over. He does, and as soon as I can without hurling myself out of a moving vehicle, I swing the door open and purge. The wind was blowing towards me, and it was getting where it shouldn't, so I stepped out and finished outside. Let me tell you, throwing up while Colorado winds are blowing SUCKS, and the cold air only made my pains even worse. And to make things EVEN worse, while I was barfing on the side of the interstate, I was also shitting myself. Isn't that just awesome?! Right?! As if throwing up without having anything to blow my nose with afterwards wasn't embarrassing enough, my bowels just had to decide to stop working. Luckily it wasn't that much, but still enough to run down my leg and force me to sit awkwardly the rest of the way to my appointment.
So we get to the cancer center, my nose is needing to be blown, there's acid and bile burning my nostrils and mouth, my pants are stained, and my stomach and back are sore from barfing in the wind. I hand John my ID so he can check me in, and I go straight to the bathroom to try to clean up. Eventually we go back to that room with all the chairs where I had my dressing changed last week, and the same nurse I had then came over and introduced us to some intern who was learning how to change dressings... I don't really like these kinds of situations. But she did a fairly good job, I guess. The needle part hurt a bit; I'm getting pretty tired of that already. Other than that my site is fine.
After we fixed a misunderstanding with my appointments there, which I'm not even gonna go into, we left. The drive home was quiet. When we pulled into the driveway, my home health nurse was there waiting, so my plan to take a long, hot, bath turned into a quick, warm one. I threw my clothes in the laundry (which I still haven't started... need to do that) and hopped in the tub. When I was done, we spent about 2 hours discussing my home care plan and doing paper work, updating the nurse on everything. My nurse will be Tina, who I had the last time we had the home care, and we're very happy about that. She's absolutely incredible.
I think the only good thing about today was the Gentiva visit. I'm looking forward to seeing Tina again.
While Sue (the nurse who saw me today) was here, it decided to snow like crazy.
Well. That's that. What a day. Tomorrow I have therapy, then Wednesday I meet the ThriveRx ladies and see my GI doctor. I think I'll be watching a lot of Disney movies tonight.
Last night I tried eating some bread. Not a great idea on my part. I was nauseous the entire rest of the night and this morning. I tried to sleep after I unhooked my TPN until noonish, but ended up just tossing and turning and checking my accounts. We left for my hematology appointment at around 12:30, I'm bloated, nauseous, and in pain.
About half-way to my appointment, on the interstate, it all starts to come back up. I ask John quickly if he has a bag, he says no, asks me if he needs to pull over. He does, and as soon as I can without hurling myself out of a moving vehicle, I swing the door open and purge. The wind was blowing towards me, and it was getting where it shouldn't, so I stepped out and finished outside. Let me tell you, throwing up while Colorado winds are blowing SUCKS, and the cold air only made my pains even worse. And to make things EVEN worse, while I was barfing on the side of the interstate, I was also shitting myself. Isn't that just awesome?! Right?! As if throwing up without having anything to blow my nose with afterwards wasn't embarrassing enough, my bowels just had to decide to stop working. Luckily it wasn't that much, but still enough to run down my leg and force me to sit awkwardly the rest of the way to my appointment.
So we get to the cancer center, my nose is needing to be blown, there's acid and bile burning my nostrils and mouth, my pants are stained, and my stomach and back are sore from barfing in the wind. I hand John my ID so he can check me in, and I go straight to the bathroom to try to clean up. Eventually we go back to that room with all the chairs where I had my dressing changed last week, and the same nurse I had then came over and introduced us to some intern who was learning how to change dressings... I don't really like these kinds of situations. But she did a fairly good job, I guess. The needle part hurt a bit; I'm getting pretty tired of that already. Other than that my site is fine.
After we fixed a misunderstanding with my appointments there, which I'm not even gonna go into, we left. The drive home was quiet. When we pulled into the driveway, my home health nurse was there waiting, so my plan to take a long, hot, bath turned into a quick, warm one. I threw my clothes in the laundry (which I still haven't started... need to do that) and hopped in the tub. When I was done, we spent about 2 hours discussing my home care plan and doing paper work, updating the nurse on everything. My nurse will be Tina, who I had the last time we had the home care, and we're very happy about that. She's absolutely incredible.
I think the only good thing about today was the Gentiva visit. I'm looking forward to seeing Tina again.
While Sue (the nurse who saw me today) was here, it decided to snow like crazy.
I hate snow. Sure, it looks pretty, but it's cold and it sucks.
After she left I took a five hour nap, which was much MUCH needed, and ended up waking up at around 8pm. An hour after I'm supposed to hook up, but whatever.
And you know what? I just now realized I forgot to administer my lantus. Awesome. I should probably do that before my blood sugar explodes.
Well. That's that. What a day. Tomorrow I have therapy, then Wednesday I meet the ThriveRx ladies and see my GI doctor. I think I'll be watching a lot of Disney movies tonight.
Sunday, March 3, 2013
A post.
Like every other week, I'm not looking forward to this one. Honestly I'm just tired of it all. I'm tired of going to my appointments only to come home depressed, exhausted, and disappointed in how it went. I'd much rather live my life and just continue to take what I get. I mean, hell, it seems like they're not even trying for me anymore.
I have a few this week. Tomorrow is hematology and Gentiva (the home health company) is supposed to call us. Tuesday is therapy. And Wednesday two ladies from ThriveRx will be visiting me to check out my TPN and see what can be done about my weight, and I have my GI appointment, in which I'll bring up the g-tube again. I'm doubting that he'll condone it. Somewhere in all this, my case manager will be in contact, either regarding my wheelchair or an appointment with my PCM.
Lately my abdominal pain has been unbearable. It's not the pain I feel when I perforate, thank god, but it's more like an annoying cramping/nauseating pain... The best way I can describe it is really bad menstrual cramps. I've been taking midol PM every night for the past three nights to help me sleep. I need to ask for pain meds and/or sleeping meds. I don't even care about being knocked out anymore, I just need to get away from all this discomfort. I can't live in my bath water (oh if only...).
My diarrhea has gotten worse, too. Go figure.
Right now my stomach is gurgling and my legs are weak, like I need food, but I can't eat. I just hooked up my TPN, so that feeling should subside in about an hour. Water doesn't fill me up anymore, and I keep having immense cravings for food. I try to avoid cooking for John now because it either makes me nauseous or it makes me upset and hungrier.
None of this is fair.
I saw a post on facebook a bit ago, that said, "God gives us only what we can handle. Apparently God thinks I'm a bad-ass." That's how I feel. It's like he's playing with me, poking at me like I'm a fucking voodoo doll. Just sitting back and seeing how much I can take. Well, God, I don't feel like I can take much more of this.
Tuesday, February 19, 2013
Today just sucked completely.
Jeez, what a pain in the ass. I don't know whether I should feel angry, upset, frustrated, sad... I pretty much feel all of these things. I just want to crawl in a hole and stay there.
To begin, I'll start with my dressing change. It actually went pretty smoothly, considering my past experiences. The only thing was that when he was taking out the needle and putting a new one in, it hurt like hell! I don't understand why; I didn't even feel it last week. The site looked good, no sign of infection, so I'm not worried. But it sucked. And because of where my port is, he has to awkwardly cover it with tegaderm like 3 times to fully cover it, and then the stuff ends up in between my boobs, all across my breast, and inside my armpit. Not very fun. Especially when you're semi-allergic to the tegaderm and the dressing irritates your skin. Itches in all the wrong places.
So then came my PCM appointment. I was dreading this because I knew I'd come out upset and disappointed in anything he'd have to say. Remember my list of things I was going to talk to him about? Yeah, well. That didn't really happen in detail. My appointment was at 2, and we left there at like 2:40... I don't feel like this doctor actually cares about me, honestly. My last PCM dropped my case because she couldn't handle it, was too emotionally attached. And now this one doesn't even spend a lot of time with me. I'm living with a chronic illness that has no cure, and he's up here in his little chair, typing away notes and talking 99 to nothin', when all I really need right now is someone to tell me everything's okay. Whatever.
So basically, he told me he doesn't recommend a g-tube, because of my surgeries I've had, but to ask my GI doctor because "he'll know more about this kind of thing" ...okay. Then when I told him I was concerned about my weight and tweaking my TPN, he just told me that my case manager will get with the pharmacist or something. That doesn't seem like something she would do. HE'S my fucking doctor, why isn't HE discussing these things with the pharmacist?! Everything else involved New York and Hirano, and even still we didn't get very far there.
We didn't schedule another appointment. I don't know what I'm going to do.
I'm upset because I thought maybe I found something that could help me (g-tube), only to have my suggestion essentially shot down. I know my GI doc will do the same, and now that I actually realize how much of a risk I am, I feel like the only thing I can do is wait to die.
I'm so sick of it all. I don't even want to go to any appointments anymore.
To begin, I'll start with my dressing change. It actually went pretty smoothly, considering my past experiences. The only thing was that when he was taking out the needle and putting a new one in, it hurt like hell! I don't understand why; I didn't even feel it last week. The site looked good, no sign of infection, so I'm not worried. But it sucked. And because of where my port is, he has to awkwardly cover it with tegaderm like 3 times to fully cover it, and then the stuff ends up in between my boobs, all across my breast, and inside my armpit. Not very fun. Especially when you're semi-allergic to the tegaderm and the dressing irritates your skin. Itches in all the wrong places.
So then came my PCM appointment. I was dreading this because I knew I'd come out upset and disappointed in anything he'd have to say. Remember my list of things I was going to talk to him about? Yeah, well. That didn't really happen in detail. My appointment was at 2, and we left there at like 2:40... I don't feel like this doctor actually cares about me, honestly. My last PCM dropped my case because she couldn't handle it, was too emotionally attached. And now this one doesn't even spend a lot of time with me. I'm living with a chronic illness that has no cure, and he's up here in his little chair, typing away notes and talking 99 to nothin', when all I really need right now is someone to tell me everything's okay. Whatever.
So basically, he told me he doesn't recommend a g-tube, because of my surgeries I've had, but to ask my GI doctor because "he'll know more about this kind of thing" ...okay. Then when I told him I was concerned about my weight and tweaking my TPN, he just told me that my case manager will get with the pharmacist or something. That doesn't seem like something she would do. HE'S my fucking doctor, why isn't HE discussing these things with the pharmacist?! Everything else involved New York and Hirano, and even still we didn't get very far there.
We didn't schedule another appointment. I don't know what I'm going to do.
I'm upset because I thought maybe I found something that could help me (g-tube), only to have my suggestion essentially shot down. I know my GI doc will do the same, and now that I actually realize how much of a risk I am, I feel like the only thing I can do is wait to die.
I'm so sick of it all. I don't even want to go to any appointments anymore.
Thursday, February 14, 2013
Happy Valentine's Day! ♥
Love is in the air and the sun is shining and birds are singing and I feel GREAT!
...aaand I am totally lying through my teeth.
Nah, it's been an okay day I guess. John gave me my Valentine's gifts like a week ago, though because he simply couldn't wait. haha. He got me a card, in which he wrote a sweet note in), a box of chocolates (which I can't eat, but he saw me eyeing the box at the store), and some iTunes credit. He knows me oh so well.
...aaand I am totally lying through my teeth.
Nah, it's been an okay day I guess. John gave me my Valentine's gifts like a week ago, though because he simply couldn't wait. haha. He got me a card, in which he wrote a sweet note in), a box of chocolates (which I can't eat, but he saw me eyeing the box at the store), and some iTunes credit. He knows me oh so well.
The card says, "I love you so much baby, your my everything.
Id do anything for you and I hope you continue to stay strong. Im always here for you.
Ill love you forever, never less always more.
I Love You XOXO"
I love him so much, grammatical errors an' all. haha.
So today we went to Musashi's for lunch. I had been craving it for a few months now. I got what I always get, the #8 (filet mignon) with fried rice and a Shirley Temple. John got two orders of fried rice and two orders of shrimp. We were the first ones seated because we got there as soon as they opened, and then everyone else started coming in, so I'm glad we were there early.
As always, the food was amazing. I couldn't finish even half of it, though; the rest is sitting in the fridge. Ever since we left the place my tummy's been rumbling and I've been pretty uncomfortable. And when we got home I went straight to the couch to lay down. All day I've been having to run to the bathroom every few minutes, and tossing and turning with my heating pad on high...
But I'll be damned if I let this get me down today. I went to Musashi's Japanese Restaurant with the love of my life for lunch, and all this gross uncomfortableness was SO worth it. So suck on that.
Subscribe to:
Posts (Atom)