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 mngie. Show all posts
Showing posts with label mngie. Show all posts
Wednesday, March 20, 2013
Wednesday, March 13, 2013
It's a slow week.
Not much is happening for me this week. John got all four of his wisdom teeth taken out yesterday so he's got the rest of the week off, and I just don't have any appointments. I would have had therapy yesterday but John cancelled it because he would be too doped up to take me. ha. Anyway, hey, I'm not complaining. It's nice to be able to do whatever without having to think about all my medical bullshit.
A few things I'm keeping tabs on, though. I'm in the process of switching infusion companies, from Amerita to ThriveRx. We have no problems with Amerita, they're great, but ThriveRx just seems much better. I'm also still looking into having my TPN adjusted... I have an appointment on the 20th to see a dietitian/pharmacist/whatever to discuss that. My wheelchair has been approved, waiting to hear about that. That bedge pillow thing? Not approved. I didn't think it would be, considering it's a piece of foam that costs $300... I mean I could easily get something much cheaper at Wal-Mart if I really needed it.
This week was the start of my home care, and we were able to keep the nurse I had last time. She's absolutely incredible. Very professional, nice, funny, down to earth. And she always knows what the fuck she's doing. My dressing change hurt a little, and we're gonna try to get some lidocaine spray. While she was here we talked about what she's missed since she was last here (like November 2012), including my diagnosis, New York, my symptoms, my stupid doctors, etc. She checked my vitals, changed my dressing and needle, checked my supplies. It's so great to have her back.
Kinda sad that I missed therapy this week. I was looking forward to showing Pamela a scrapbook I've been keeping. It has a bunch of old family pictures, my parents, me, my aunt and cousins, sisters. I miss how close my family used to be. And I really miss my Aunt Lynn. It's a shame, how she has to live... but... that's another story, let's not go there.
I've been making bracelets and keychains for people, sending them out. That and watching Doctor Who keeps me busy/entertained. We get paid tomorrow, so I've been planning my bill-paying session, and making a grocery list. Since I don't eat anymore our grocery bill has been cut in half, pretty much. It's the only nice thing about not eating.
I think this Flagyl is working, but I've been running to the bathroom every few minutes it seems. That makes trying to relax or going places very difficult. No matter where I go the very first thing I look for is a bathroom, and I make sure I'm close to it. Isn't that an awesome way of living? Constantly thinking about the bathroom and trying to concentrate on not shitting yourself.
And that, my friends, is where I shall end this post.
A few things I'm keeping tabs on, though. I'm in the process of switching infusion companies, from Amerita to ThriveRx. We have no problems with Amerita, they're great, but ThriveRx just seems much better. I'm also still looking into having my TPN adjusted... I have an appointment on the 20th to see a dietitian/pharmacist/whatever to discuss that. My wheelchair has been approved, waiting to hear about that. That bedge pillow thing? Not approved. I didn't think it would be, considering it's a piece of foam that costs $300... I mean I could easily get something much cheaper at Wal-Mart if I really needed it.
This week was the start of my home care, and we were able to keep the nurse I had last time. She's absolutely incredible. Very professional, nice, funny, down to earth. And she always knows what the fuck she's doing. My dressing change hurt a little, and we're gonna try to get some lidocaine spray. While she was here we talked about what she's missed since she was last here (like November 2012), including my diagnosis, New York, my symptoms, my stupid doctors, etc. She checked my vitals, changed my dressing and needle, checked my supplies. It's so great to have her back.
Kinda sad that I missed therapy this week. I was looking forward to showing Pamela a scrapbook I've been keeping. It has a bunch of old family pictures, my parents, me, my aunt and cousins, sisters. I miss how close my family used to be. And I really miss my Aunt Lynn. It's a shame, how she has to live... but... that's another story, let's not go there.
I've been making bracelets and keychains for people, sending them out. That and watching Doctor Who keeps me busy/entertained. We get paid tomorrow, so I've been planning my bill-paying session, and making a grocery list. Since I don't eat anymore our grocery bill has been cut in half, pretty much. It's the only nice thing about not eating.
I think this Flagyl is working, but I've been running to the bathroom every few minutes it seems. That makes trying to relax or going places very difficult. No matter where I go the very first thing I look for is a bathroom, and I make sure I'm close to it. Isn't that an awesome way of living? Constantly thinking about the bathroom and trying to concentrate on not shitting yourself.
And that, my friends, is where I shall end this post.
Sunday, March 10, 2013
Starting to hate weekends, too.
This weekend started off absolutely terrible. Friday we spent five hours at the cancer center, I had my iron infusion. It was alright, I mean I really like there. The staff is great, like I mentioned before, and I even got compliments on my MNGIE bracelet and the hat I was wearing. So that was nice. It was just a grueling five hours. I had my iPad, but their WiFi was kind of slow and the fluids and iron they gave me were making me tired. I was already tired because I had to get up at 7:30 that morning, so...
Anyway, John got sick while we were there, poor thing. He rarely gets sick. We believe it was food poisoning. He has this terrible habit of leaving pizza he ordered out on the stove overnight, and eating the rest the next day. I try to tell him to put it away, because leftover anything at room temperature overnight is dangerous, but he's a guy, so he doesn't listen. He's barely eaten anything since Friday.
After we got home, I pretty much slept the rest of the day. Took a few baths. Saturday morning was the worst; I threw up at around 4:30, and then woke up again at like 8 with an intense pain in my hips. I was freaking out, I could barely walk. I had never felt this pain before. John had stayed up late the night before, so he was totally out and probably couldn't hear me crying. I decided if a hot bath wouldn't help, I'd wake him up to take me to the ER. It helped a bit, but as soon as I laid back down the pain slowly came back. I eventually fell asleep through it, woke up at like 2pm, and it was gone. Just gone. I still don't know what happened.
Saturday afternoon and evening got better. I felt okay because I had thrown up, so no nausea or anything. I watched Doctor Who all day and all night, until around 2 or 3am. I made a couple bracelets, too. We were going to clean the house yesterday but that didn't happen. I did manage to do a load of laundry, though. Maybe we'll get something done today. I dunno.
I still need to set all the clocks forward...
I started my Flagyl Friday. I don't know if I can tell a difference yet... I think it's helping?
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.
Tuesday, March 5, 2013
Oddly enough today was a pretty okay day. Isn't it terrible that having a good day is odd for me? Really, though. I'm always expecting bad days.
Anyway, therapy went well. We discussed my childhood, and some of John's. It was a nice break from talking about how my disease is making me feel. That topic can get pretty depressing.
This morning was slow. Every day I find myself more and more exhausted and always wanting to not wake up. Like I'm too comfortable to stop sleeping. It seems like I don't get enough sleep at night; my TPN causes me to have to pee every few hours (it used to be much more frequent), so I'm always getting up to go and having to fall back to sleep. Sometimes it's easy and sometimes I end up staring at the ceiling for a while.
I just really really enjoy sleeping now. A lot more than I used to. I constantly feel like I could easily fall asleep right there, no matter where I am. I never want to go anywhere anymore.
I think most of that is because of my energy level, but it's also because I can escape my pain when I sleep. Like I can just slip off to dreamland and forget about everything going on. That sounds kind of morbid, I know. But hey, it's not like there's anything else I can do. The pain is always there. Another option would be to off myself, and we all know that ain't about to happen. Sometimes I wish it was that easy, though, to be honest.
It's 7:43pm right now. I think I may try to go to sleep early tonight. I was going to work on more bracelets, but I don't really feel like it right now. Tomorrow we figure out what to do about my TPN, and I see my GI doctor a few hours later. Not looking forward to it.
Anyway, therapy went well. We discussed my childhood, and some of John's. It was a nice break from talking about how my disease is making me feel. That topic can get pretty depressing.
This morning was slow. Every day I find myself more and more exhausted and always wanting to not wake up. Like I'm too comfortable to stop sleeping. It seems like I don't get enough sleep at night; my TPN causes me to have to pee every few hours (it used to be much more frequent), so I'm always getting up to go and having to fall back to sleep. Sometimes it's easy and sometimes I end up staring at the ceiling for a while.
I just really really enjoy sleeping now. A lot more than I used to. I constantly feel like I could easily fall asleep right there, no matter where I am. I never want to go anywhere anymore.
I think most of that is because of my energy level, but it's also because I can escape my pain when I sleep. Like I can just slip off to dreamland and forget about everything going on. That sounds kind of morbid, I know. But hey, it's not like there's anything else I can do. The pain is always there. Another option would be to off myself, and we all know that ain't about to happen. Sometimes I wish it was that easy, though, to be honest.
It's 7:43pm right now. I think I may try to go to sleep early tonight. I was going to work on more bracelets, but I don't really feel like it right now. Tomorrow we figure out what to do about my TPN, and I see my GI doctor a few hours later. Not looking forward to it.
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.
Thursday, February 28, 2013
Happy Rare Disease Day!
Er... Should it be Merry Rare Disease Day? I dunno.
So this week has definitely had it's ups and downs. Mostly downs. A few highlights:
So this week has definitely had it's ups and downs. Mostly downs. A few highlights:
- Dressing change went terrible. Details below.
- Choked on my own vomit; almost died. Very scary.
- Shared my beads and bracelets with my therapist, that was fun.
- Cooked a HUGE pot of spaghetti and had a breakdown.
All the while dealing with abdominal pain from hell. Not fun.
Mondays are my dressing change days. I go to the hospital, check in at the clinic, and wait for Leo to change my dressing and needle. This was the second time he wasn't there. Okay, so I'll come back on Tuesday, no big deal... A little irritated. Tuesday comes, we call and see if he's back. Nope. Now I'm pissed off. "He should be back tomorrow." Wednesday comes. No Leo. By now I'm blowing up Facebook, surely annoying all my friends, ranting and raving about being pissed and hating Evans and blah blah blah. I need my dressing changed pronto. One of my biggest worries is getting an infection and having to have my line pulled and replaced. I know it'll probably happen eventually, but I've only had this damn thing for a month. So John's head is spinning trying to find someone to change my port. He was waiting on a call back from the cancer center. The Evans ER can't do it, only god knows why. No one at my PCM's clinic can do it. I can't go to Memorial because of insurance reasons. Absolutely ridiculous. Finally, the cancer center calls back and says they can get me in. So we drive the 10 miles to their facility and voila! I get my damn dressing change three days late.
My experience there was incredible. We were only there for maybe 15 minutes, where going to the clinic at Evans would have taken an hour or two (YEAH). The staff was very nice. And even though I had to sit in a room full of elderly sick people who were receiving fluids and chemo and whatnot (reminded me of that movie, 50/50... anyone see that? Love it.), I felt very comfortable being there. The chairs were comfy, too. The nurse who came to change my dressing said my port looked beautiful, no sign of infection, aside from my skin being irritated from the dressing. She asked me like three times how we were on supplies, and gave us more dressings just in case. She changed my dressing in less than 5 minutes, and was even as gentle and sterile as she was supposed to be. My only problem, though, is the dressing she put on isn't really sticking very well, and even though she said it was safe to take a shower, I'm not gonna risk that. I just taped the sides down.
After that was done, we went back to Evans to see my case manager, Johelen. She's an amazing case manager, I can't believe how much she has gotten done for us. Anyway, we had to see her because she needed me to sign a paper for the ECHO program. I took my Palliative Care pamphlets with me to show her, she looked them over, and wrote down the info. I explained what it was and how it would help me, and she mentioned that Tricare may not pay for this if I am also receiving home care (ECHO program). The reason they want me in that is to get me a way to have my dressings changed when the clinic closes. However, I would be totally okay with going to the cancer center for my changes. So if I like the palliative care, I can just forget about ECHO. Did all that make sense? haha. In short, palliative care and cancer center, or ECHO program.
Another thing we talked about was getting me a wheelchair. I can barely walk two yards without having pain somewhere, whether it be back pains, leg pains, abdominal pains, etc. I get winded very easily and have to sit down almost immediately whenever we stop somewhere. Because I can't eat, I don't have the energy during the day that food could provide. Since I can still walk, I would get one of those fold-up wheelchairs to just take places. It's taken me a while to accept the fact that I need one, but I guess the time has come.
We finally got home at around 5, and I gave myself my insulin and started dinner for the guys. I made double the amount of spaghetti I usually make. It was okay, it just really sucked that I wasn't able to eat any. I had an icee in the fridge that John had got for me on the way home, seems like that's all I can handle nowadays, even though they go right through me. I went to take it out so I could go sit down and enjoy it, but I guess my hand slipped and I dropped the cup. Icee went everywhere, all over the kitchen floor and my right foot. John, bless him so, immediately got up and started grabbing napkins, helping me clean it all up. I started to cry, of course; had to sit down and just let the tears flow. The last time something like this happened, I had dropped the roll of paper towels in the sink while the water was running, and it just set me off. After John finished what he was cleaning, he came over and hugged me, asked me what was wrong. Honestly when these things happen, I can never come up with an answer right away. But then I realized that it's the same thing that's been wrong for a few weeks now. I can't do anything anymore. I don't have the energy. I want to clean so badly. I want to sweep and mop the floors, and use PineSol so I can smell the lemony awesomeness. I want to wipe down things with the Lysol wipes and reorganize my area. I want to vacuum the carpet and clean the tables. I feel like people see me as a lazy bum, not even trying to get up and out, but people don't understand. I AM trying. I try very hard. I can't help that I run out of spoons so fast*. One time, before I knew about all this MNGIE crap, and my energy was already starting to go away, one of my "friends" got in my face and called me lazy and boring because I never felt like hanging out. She said, "You're always moping around, doing nothing but sitting at your house online or something. You never DO anything."
I wasn't sure what to say because I didn't know why I didn't feel like doing anything. It's not that I never want to, I do. I would love to be able to go out and have fun like I used to. Go places, goof off, go window shopping, walk around outside, site-seeing. I'd also love to be able to have a damn job, and earn my own money. But the thing is, I can't. I just can't do those things anymore. People don't get that I can't just replenish my energy. It's not like taking your pokemon to Nurse Joy.
Well, I kind of went off topic there for a bit, didn't I? Oh well.
Next week I have a hematology appointment Monday, therapy on Tuesday, and a GI appointment on Wednesday. I'll be bringing up the g-tube situation then.
*For more info on the Spoon Theory, clicky clicky.
Monday, February 25, 2013
Wow.
Isn't it absolutely amazing how we change over the years? I just spent about an hour and a half reading a journal I had written in from December 2008 to like... September 2010. I can't believe how dramatic I was during high school. Always worried about John cheating on me, complaining about not being happy at home. There was nothing wrong with my home life at all. I was just a selfish teenager. There were so many entries where I'd go from hating my life to happy as ever. It's kind of funny, looking back. But then I realize how nowadays everything's so different. For example, the MNGIE is here. That definitely changed my perspective on things.
Anyway, I just can't believe how much stress I let myself go under. I still do it, too, I over think everything and I always have to know things that maybe I'd be better off not knowing. My situation is difficult because I am able to admit these things, my flaws and whatnot, but I don't know how to go about fixing them or coping.
I was going to wait until tomorrow to blog, but I figured I'd get these things down tonight.
Today was terrible. We went to get my dressing changed today and Leo (the nurse who changes my dressing each week) wasn't in, so we have to try again tomorrow. We're going to start calling before we go because even a simple trip to the clinic exhausts me now.
I had a little breakdown when we got home because I was pissed that nothing was going right. My PCM sucks, and it seems like he isn't doing his damn job. Then there was a bunch of confusion with my GI appointment that's next week, and it was almost cancelled. Which would have been absolutely TERRIBLE because it takes them forever to get me in for an appointment, and rescheduling this would be hell. Not to mention I need to discuss a g-tube option with McNally. So I need this appointment.
I ended up getting frustrated, John ended up slamming the door when he left for work, and I ended up screaming bloody murder and crying myself to sleep. The two-hour nap made things a little better.
I've been making friendship bracelets. So far I've made 3; one for Kaitlyn and Kathy, and one for myself. I'm pretty proud of how they've been coming out. I figured out how to create my own patterns, so that's awesome.
I have therapy on Tuesdays now.
Looking forward to taking my bracelets and my beads to share with Pamela.
Anyway, I just can't believe how much stress I let myself go under. I still do it, too, I over think everything and I always have to know things that maybe I'd be better off not knowing. My situation is difficult because I am able to admit these things, my flaws and whatnot, but I don't know how to go about fixing them or coping.
I was going to wait until tomorrow to blog, but I figured I'd get these things down tonight.
Today was terrible. We went to get my dressing changed today and Leo (the nurse who changes my dressing each week) wasn't in, so we have to try again tomorrow. We're going to start calling before we go because even a simple trip to the clinic exhausts me now.
I had a little breakdown when we got home because I was pissed that nothing was going right. My PCM sucks, and it seems like he isn't doing his damn job. Then there was a bunch of confusion with my GI appointment that's next week, and it was almost cancelled. Which would have been absolutely TERRIBLE because it takes them forever to get me in for an appointment, and rescheduling this would be hell. Not to mention I need to discuss a g-tube option with McNally. So I need this appointment.
I ended up getting frustrated, John ended up slamming the door when he left for work, and I ended up screaming bloody murder and crying myself to sleep. The two-hour nap made things a little better.
I've been making friendship bracelets. So far I've made 3; one for Kaitlyn and Kathy, and one for myself. I'm pretty proud of how they've been coming out. I figured out how to create my own patterns, so that's awesome.
I have therapy on Tuesdays now.
Looking forward to taking my bracelets and my beads to share with Pamela.
Saturday, February 23, 2013
Looking for life.
Wednesday, at my therapy session, my therapist suggested we look into Palliative Care, which is medical care provided by physicians, nurses and social workers that specializes in the relief of the pain, symptoms and stress of serious illness. My disease has gotten to the point where I feel like I could benefit from this. No one wants to think about it, but my life's been cut short. I'm going to die sooner rather than later. And I don't want to go uncomfortably. I feel like my doctors are giving up on me, telling me Oh, your MNGIE is progressing, there's nothing we can do, so here's some more therapy and maybe some pills that may or may not work for you. Okay.
I don't have anymore options other than randomly dealing with the symptoms I have. And so far, no one will listen to me about my nausea and vomiting (hopefully my GI doctor will be willing to try what I want), and those are the things that have been getting worse and worse by the day. I can no longer eat. Anything. Period. Zilch, nada, no food whatsoever. I can barely handle a peppermint anymore when I'm nauseous. My weight is continuing to drop. I can't comfortably take a bath because I have to keep my port out of the water, and my bones rubbing against the tub floor is painful. My muscles ache more and more every day. I am not happy or comfortable no matter where I am.
I wish my PCM cared enough to read this blog. Then maybe he'd fucking listen to me.
Anyway, I'm going to look more into this palliative care thing. Hopefully it could provide me with some relief somehow.
I don't have anymore options other than randomly dealing with the symptoms I have. And so far, no one will listen to me about my nausea and vomiting (hopefully my GI doctor will be willing to try what I want), and those are the things that have been getting worse and worse by the day. I can no longer eat. Anything. Period. Zilch, nada, no food whatsoever. I can barely handle a peppermint anymore when I'm nauseous. My weight is continuing to drop. I can't comfortably take a bath because I have to keep my port out of the water, and my bones rubbing against the tub floor is painful. My muscles ache more and more every day. I am not happy or comfortable no matter where I am.
I wish my PCM cared enough to read this blog. Then maybe he'd fucking listen to me.
Anyway, I'm going to look more into this palliative care thing. Hopefully it could provide me with some relief somehow.
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.
Wednesday, February 13, 2013
Sometimes.
Sometimes you have to be a total bitch to get what you want or need. Especially with doctors. I have a problem: I'm not assertive enough to get what I need. Doctor appointments make me nervous, and as much as I want something, whenever I bring it up to a doctor, and he turns it down, I go with the flow and just let him do whatever he wants. This is not the way to be when you're dying of a chronic illness. So I need to step up and fight for what I want regarding my treatment.
I have therapy in a couple hours... Last week was okay, there was no crying. This week I'm not sure how much talking there will be, because I haven't really had anything happen. I did have a small breakdown yesterday, though... I don't know what happened but I just started crying and couldn't stop. I needed someone to listen to me scream out my anger, but all I have are my cats, and when I screamed in my pillow they just ran away. haha... John wasn't home, so screaming and yelling was easy. I hope I didn't freak the neighbors out. Anyway, it made me feel better, and it tired me out enough to take a good nap.
I couldn't get to sleep last night though until around 2am. I was busy playing with my iPad/iPhone apps and researching diverticulitis in the small intestine. I found a research study article done on 3 patients, all over 65 years old, all women, who had diverticulitis in their small intestine. (Yes, I said over 65. So I don't understand why the fuck I have to deal with this. I'm only 20 years old. And the diverticulitis started when I was 16. It's not fair!!) In the study, two of the patients had small bowel resections (where they remove part of the small bowel), and were given antibiotics post-op. They were fine afterward. The third patient was like me, with diverticula all throughout, and they didn't want to risk anything so she didn't have any resections. They just gave her antibiotics and hoped for the best. She got better some I guess. But according to the article SBD (small bowel diverticulitis) is very rare, usually isn't diagnosed until post-operation, and there isn't any known treatments for it.
So, as far as I'm concerned, I'm pretty much screwed.
As for the MNGIE disease, I already know and have accepted that it'll only get worse with progression. Dialysis may help slow things down, and that seems to be the only option that isn't too risky for me. For the gastroparesis, I'm going to see what Dr. Jung thinks about me getting a G-Tube. I don't know how that will go, though.
I guess my spirits haven't been too great lately, but I'm still trying. I've been reading Bible verses like crazy. They do help sometimes, until I run across one that pisses me off or something. My high school chorus teacher sent me a book to read called Everyday Grace by Marianne Williamson. I've started it, it seems pretty good. I'm excited to finish it. It was really nice and thoughtful of Boehm to send it to me. She wrote me a nice note with it, too.
I think now I'm just more frustrated and angry than depressed about all this. Or maybe not. My feelings are always changing, I don't know...
Tonight we're going to a friend's house for dinner. I'm excited because we haven't hung out in a good while because of all the crap going on. She's cooking burritos for John that he loves so much. I'll be sipping on soup. I don't like burritos anyway so it won't bother me. I have been craving Musashi's food SO BAD recently, though, and if I don't eat it soon I might kill someone. ha.
I'm rambling now.
hm.
I have therapy in a couple hours... Last week was okay, there was no crying. This week I'm not sure how much talking there will be, because I haven't really had anything happen. I did have a small breakdown yesterday, though... I don't know what happened but I just started crying and couldn't stop. I needed someone to listen to me scream out my anger, but all I have are my cats, and when I screamed in my pillow they just ran away. haha... John wasn't home, so screaming and yelling was easy. I hope I didn't freak the neighbors out. Anyway, it made me feel better, and it tired me out enough to take a good nap.
I couldn't get to sleep last night though until around 2am. I was busy playing with my iPad/iPhone apps and researching diverticulitis in the small intestine. I found a research study article done on 3 patients, all over 65 years old, all women, who had diverticulitis in their small intestine. (Yes, I said over 65. So I don't understand why the fuck I have to deal with this. I'm only 20 years old. And the diverticulitis started when I was 16. It's not fair!!) In the study, two of the patients had small bowel resections (where they remove part of the small bowel), and were given antibiotics post-op. They were fine afterward. The third patient was like me, with diverticula all throughout, and they didn't want to risk anything so she didn't have any resections. They just gave her antibiotics and hoped for the best. She got better some I guess. But according to the article SBD (small bowel diverticulitis) is very rare, usually isn't diagnosed until post-operation, and there isn't any known treatments for it.
So, as far as I'm concerned, I'm pretty much screwed.
As for the MNGIE disease, I already know and have accepted that it'll only get worse with progression. Dialysis may help slow things down, and that seems to be the only option that isn't too risky for me. For the gastroparesis, I'm going to see what Dr. Jung thinks about me getting a G-Tube. I don't know how that will go, though.
I guess my spirits haven't been too great lately, but I'm still trying. I've been reading Bible verses like crazy. They do help sometimes, until I run across one that pisses me off or something. My high school chorus teacher sent me a book to read called Everyday Grace by Marianne Williamson. I've started it, it seems pretty good. I'm excited to finish it. It was really nice and thoughtful of Boehm to send it to me. She wrote me a nice note with it, too.
I think now I'm just more frustrated and angry than depressed about all this. Or maybe not. My feelings are always changing, I don't know...
Tonight we're going to a friend's house for dinner. I'm excited because we haven't hung out in a good while because of all the crap going on. She's cooking burritos for John that he loves so much. I'll be sipping on soup. I don't like burritos anyway so it won't bother me. I have been craving Musashi's food SO BAD recently, though, and if I don't eat it soon I might kill someone. ha.
I'm rambling now.
hm.
Thursday, February 7, 2013
An angry and frustrated TMI post.
I am one pissed off little woman right now. There seems to be so much going wrong nowadays and it just doesn't help that I'm losing control of my bowels. I swear, it's probably the worst and most embarrassing part of my situation, even worse than the pain and discomfort I feel on a daily basis.
This morning I woke up, unhooked, went back to sleep. I felt terrible, I was bloated because I ate last night, so I knew either I was going to throw up or I would eventually have to run to the bathroom. So I was waiting to see what would happen, I guess. Needless to say, my bowels woke me up from the nice sleep I was in, and I ended up having to wash my undies and yoga pants. Clean up on isle couch. Actually, I didn't make a mess on the couch, thank god. But it was enough to have to change clothes.
How embarrassing all this is. John came to check on me and asked if I needed anything, and got me a change of clothes. I'm so happy I have him, and I'm so glad he's never made fun of me for shitting myself. It's not fun. And I feel like a damn old lady who needs diapers. It's bad enough I have to depend on panty liners and pads all the time now.
Anyway, I've been constantly running to the bathroom all day, and it's usually an every day thing. It's terrible. I'm almost always thinking about it and worrying about going in public. Especially when I have a lot of appointments in one day. Have you ever seen someone have to actually hold their ass in order to keep from losing control? Yeah, that's me. I'm the girl who shits all the time. Go ahead and laugh it up, Karma's a bitch.
So this is one of the reasons I'm going to talk to my doctor about getting a Gtube put in. I'm hoping having it will allow me to drain my stomach and eliminate the chances of having so many accidents all the time. I'm so glad I haven't lost control of my bladder yet. I would hate to have to cath myself, or cath period... I've had so many UTIs from the catheters in the hospital. That would suck. And they're so uncomfortable.
Back to my shitty day (pun intended). I had two appointments today, one audiology, and one for my SSI/Disability interview. The audiology one went well, as always. Dr. Illif is awesome. I won't see him again for another 6 months. The SSI one, however, sucked immensely. It didn't take long for us to be called, to the waiting part was fine. But during the appointment, we learned that I'm not eligible for either SSI nor SSDI. Why? Because of my work history not being extensive enough and because of John's base income.
What the flying fuck.
It's not fair!! They don't even consider my medical problems until I'm already accepted. That's complete bullshit. And here's a kicker! John would be eligible for an extra $900 a month because he can't work his normal job. So he'd get disability, but I can't get jack shit because I'm married to him. Seriously. I'm over here dying of an illness that has no cure, and he can get $900 because he can't lift a box.
I'm not complaining about him being able to get that extra money. By all means, please let us get it. But it doesn't seem right that they only consider income and past work experience to be eligible for anything. Especially since the income they consider isn't even the income we actually receive. No, he doesn't even see that $6000 a month. We only get about $1500 a month, and all of that goes to groceries and bills. We haven't been able to put any money in savings. What the fuck are we gonna do when he gets out?!
I'm just so mad right now. Stressed out, worried. And that does absolutely nothing for my illness. It only makes things worse. So why can't something, just one thing, go right for once?
This morning I woke up, unhooked, went back to sleep. I felt terrible, I was bloated because I ate last night, so I knew either I was going to throw up or I would eventually have to run to the bathroom. So I was waiting to see what would happen, I guess. Needless to say, my bowels woke me up from the nice sleep I was in, and I ended up having to wash my undies and yoga pants. Clean up on isle couch. Actually, I didn't make a mess on the couch, thank god. But it was enough to have to change clothes.
How embarrassing all this is. John came to check on me and asked if I needed anything, and got me a change of clothes. I'm so happy I have him, and I'm so glad he's never made fun of me for shitting myself. It's not fun. And I feel like a damn old lady who needs diapers. It's bad enough I have to depend on panty liners and pads all the time now.
Anyway, I've been constantly running to the bathroom all day, and it's usually an every day thing. It's terrible. I'm almost always thinking about it and worrying about going in public. Especially when I have a lot of appointments in one day. Have you ever seen someone have to actually hold their ass in order to keep from losing control? Yeah, that's me. I'm the girl who shits all the time. Go ahead and laugh it up, Karma's a bitch.
So this is one of the reasons I'm going to talk to my doctor about getting a Gtube put in. I'm hoping having it will allow me to drain my stomach and eliminate the chances of having so many accidents all the time. I'm so glad I haven't lost control of my bladder yet. I would hate to have to cath myself, or cath period... I've had so many UTIs from the catheters in the hospital. That would suck. And they're so uncomfortable.
Back to my shitty day (pun intended). I had two appointments today, one audiology, and one for my SSI/Disability interview. The audiology one went well, as always. Dr. Illif is awesome. I won't see him again for another 6 months. The SSI one, however, sucked immensely. It didn't take long for us to be called, to the waiting part was fine. But during the appointment, we learned that I'm not eligible for either SSI nor SSDI. Why? Because of my work history not being extensive enough and because of John's base income.
What the flying fuck.
It's not fair!! They don't even consider my medical problems until I'm already accepted. That's complete bullshit. And here's a kicker! John would be eligible for an extra $900 a month because he can't work his normal job. So he'd get disability, but I can't get jack shit because I'm married to him. Seriously. I'm over here dying of an illness that has no cure, and he can get $900 because he can't lift a box.
I'm not complaining about him being able to get that extra money. By all means, please let us get it. But it doesn't seem right that they only consider income and past work experience to be eligible for anything. Especially since the income they consider isn't even the income we actually receive. No, he doesn't even see that $6000 a month. We only get about $1500 a month, and all of that goes to groceries and bills. We haven't been able to put any money in savings. What the fuck are we gonna do when he gets out?!
I'm just so mad right now. Stressed out, worried. And that does absolutely nothing for my illness. It only makes things worse. So why can't something, just one thing, go right for once?
Monday, February 4, 2013
Shouldn't have eaten that pizza.
I hate not being able to enjoy food. I mean, I can enjoy it, I guess. But the aftermath completely sucks. Sometimes even during the eating process, it sucks. My stomach gets all crampy and bubbly, and sometimes (TMI ALERT) I lose control of my bowels. This is actually a problem I have to deal with all day, every day, and it is probably the most embarrassing part of dealing with MNGIE. I can say with confidence that every last bit of modesty that I once had has completely jumped out the window. I warned you, and so did the blog before you entered it.
Anyway. Aside from my uncontrollable angry bowels, I also bloat. And the bloating isn't like menstrual bloating. Not just a little bit of pressure every once in a while, oh no. It's more like a sudden 7-month pregnancy bloating. It literally looks like I'm carrying a child. I used to be self-conscious about this, but ever since all the hospital stays, like I said, modesty is gone. I don't even wear bras anymore. No shame, it's the best thing I've ever decided for myself.
I just finished writing a letter to my friend, Bre. She was my first and only friend I made at Berry, when I attended. We instantly clicked, it was amazing. I got a card from her in the mail today and she has requested we be pen pals and start writing letters more. I love this idea. I wish more people would start writing to me. Letters mean so much and reading them, especially when they're long, helps to take my mind off things.
I also wish I were a cat. I mean look at him, he looks so comfy and cozy.
Anyway. Aside from my uncontrollable angry bowels, I also bloat. And the bloating isn't like menstrual bloating. Not just a little bit of pressure every once in a while, oh no. It's more like a sudden 7-month pregnancy bloating. It literally looks like I'm carrying a child. I used to be self-conscious about this, but ever since all the hospital stays, like I said, modesty is gone. I don't even wear bras anymore. No shame, it's the best thing I've ever decided for myself.
I just finished writing a letter to my friend, Bre. She was my first and only friend I made at Berry, when I attended. We instantly clicked, it was amazing. I got a card from her in the mail today and she has requested we be pen pals and start writing letters more. I love this idea. I wish more people would start writing to me. Letters mean so much and reading them, especially when they're long, helps to take my mind off things.
I also wish I were a cat. I mean look at him, he looks so comfy and cozy.
 |
| He's even snoring. |
| This was a totally random blog post. I just feel a need to get my thoughts out tonight. |
The Big Apple
New York, New York!
Okay, so it took me a while to decide to try this again, after I started a post two days ago about this trip, finished it this morning, only to lose it completely. So it probably won't include every detail of my trip like I had planned. Needless to say I am still very upset about it.
I guess I'll start with a little list of highlights that happened:
| My power port needle set off the security thing in the Colorado Springs airport, and I was patted down by the TSA. That was interesting. Our flight to Dallas got upgraded to first class, I guess because I was in a wheelchair and they wanted me to be comfortable. Nice people. Thanks, American Airlines.  |
| Landing in New York, we flew over the Statue of Liberty and she looked about an inch tall. Very cool to see such a major landmark! |
It took us about 3 hours to find our hotel, and by the time we did, I was miserable and cold and I already wanted to go home. I don't know why they gave us a rental car in New York City. |
| This was the view from our hotel. |
 |
| Not even five minutes in the cab, and we wreck. An hour and a half later. We get out and find a new cab. |
| We finally arrive at the medical center, sign in, and then wait another hour for Dr. Hirano. I'm already exhausted and John has to be stressed out as hell. The appointment pretty much goes like this: We discuss my history, my symptoms, what MNGIE is, etc. Hirano tells us about the trial and then tells me that I wouldn't be eligible due to my diverticulitis. He says there are other options, such as a bone marrow transplant elsewhere, or dialysis, or platelet treatment, and some other things I guess. But by now I'm only half listening and going in and out of attention because he said that all of these could be fatal for me due to my diverticulitis. Tests are done, I'm told my ptosis is evident and I have minor muscle weakness. More testing is done and we don't get back to the hotel until around 4:30.  |
| The view from a bridge at the medical center. |
Next morning, we get up at 7, pack, and call down for our rental car. We miss our flight because the idiot valet brought us the wrong car and we had to wait for him to bring the right one. On our way to the rental car place, we drove through Times Square and down Broadway, so I got to see all the big billboards and Times Square up close. That was neat. Some pictures:
So. I guess the trip overall sucked, really. The entire time I felt horrible, John and I were both stressed and overwhelmed at the city. And my appointment only made me more upset about my situation. I don't ever want to go back. Maybe if I were actually healthy, and had time and money to spend, New York City would be a fun place. But I'm not, so I have absolutely no interest in making a return visit.
My thoughts on the whole thing? I'm sad. I'm angry at my diverticulitis for keeping me from treatment. The fact that anything could kill me just sucks completely, and it's not fair. I have no one to blame, and that makes me even angrier. I want to blame God, but I don't even feel like he's beside me anymore. I don't think I've ever felt him beside me. I'm afraid of what's to come, but I know that I need to stop living in fear and just accept it all. It's hard to take in, though, and putting so much effort into trying to be calm and collected is the most exhausting thing I've ever done.
I guess it's back to my weekly appointments and nighty nausea.
Wednesday, January 30, 2013
Nerves.
I got my dressing changed for the first time today. It wasn't a big deal, actually. I was expecting a lot more pain, but the dressing doesn't even itch too bad. So that was a huge relief.
Tomorrow morning we leave for New York, and I haven't even started packing yet. Not that I need to pack a lot, mostly paper work and medical supplies. We'll only be there for two and a half days, so I don't need a lot of clothes. I don't know if I'm more excited or nervous about the trip. I've never been to a city bigger than Atlanta before, and lord knows I have this god awful country bumpkin accent, haha. But I've heard that New Yorkers are actually very friendly to tourists, and I hope that's true. Coloradans have been pretty friendly, but these people are more like a rural friendly, especially in the springs. I don't know how to explain that.
Anyway. I think I'm more nervous about meeting Dr. Hirano. Yeah, that's definitely it. Excited about seeing New York, nervous about the reason I'm going there... Oh, bother.
Posted with BlogsyMonday, January 28, 2013
My Story
Six years ago I wouldn't have imagined being diagnosed with a mitochondrial disease. Up until 2007 I had a normal life. I rarely got colds, or infections. I was full of life and energy. And then the symptoms started.
I started having intense abdominal pain in the middle of night and begged my parents to take me to the ER. After many x-rays and bowel studies, they told me I had an ovarian cyst that had ruptured... Wrong. Then they told me I had PID, pelvic inflammatory disease, which caught me off guard completely. Also wrong. No one had any idea what was going on. A year later, the pain came back, and I ended up having a small bowel resection and was told I had diverticulitis. They told me I would have to change my diet and try not to perforate the diverticuli again. Like I could really control it.
Since then, I have had 3 small bowel resections, and I've had 4 or 5 hospital stays. I've lost count. My most recent surgery was in September 2012, where they told me I probably wouldn't survive another bowel resection. That's always nice to hear, isn't it?
Let me rewind a bit, and get to the mito part of all this. In June/July 2012, my husband and I took a road trip to Georgia to see our family and friends for a few weeks. During that time, over night, I suddenly lost my hearing. I thought maybe I had an ear infection or I had water in my ears from our camping weekend, and maybe it would go away. I tried flushing my eardrums, I tried blowing it out, nothing worked. So we went to the ER and got a referral to an ENT there. Eventually I saw the doctor, and he did a hearing test and gave me the results to take back to Colorado.
Once we got back, I made an appointment with an ENT here, and more tests were done. The doctor ordered an MRI, and I saw a neurologist as well, because he determined that my hearing loss was central. A couple weeks passed, and I then got a letter from the neurologist in the mail suggesting that I may have Mitochrondrial Neurogastrointestinal Encephalopathy disease, or MNGIE disease.
After looking this condition up, I realized that I may have found the cause of all my problems. All of my symptoms were there. Hearing loss, extreme weight loss, dysmotility, dysphasia, neuropathy, ptosis, gastroparesis, malnutriton... I couldn't imagine it being anything else, and I was so happy to finally have an answer after 5 years.
Weeks went by, and we made arrangements to have testing done for the disease. I went to Children's Hospital in Denver to have the testing done, and to discuss the MNGIE. The samples were sent to Baylor University and to Columbia University, which is where Dr. Michio Hirano, a MNGIE specialist, works.
You can go ahead and guess that my tests came back positive.
I started having intense abdominal pain in the middle of night and begged my parents to take me to the ER. After many x-rays and bowel studies, they told me I had an ovarian cyst that had ruptured... Wrong. Then they told me I had PID, pelvic inflammatory disease, which caught me off guard completely. Also wrong. No one had any idea what was going on. A year later, the pain came back, and I ended up having a small bowel resection and was told I had diverticulitis. They told me I would have to change my diet and try not to perforate the diverticuli again. Like I could really control it.
Since then, I have had 3 small bowel resections, and I've had 4 or 5 hospital stays. I've lost count. My most recent surgery was in September 2012, where they told me I probably wouldn't survive another bowel resection. That's always nice to hear, isn't it?
Let me rewind a bit, and get to the mito part of all this. In June/July 2012, my husband and I took a road trip to Georgia to see our family and friends for a few weeks. During that time, over night, I suddenly lost my hearing. I thought maybe I had an ear infection or I had water in my ears from our camping weekend, and maybe it would go away. I tried flushing my eardrums, I tried blowing it out, nothing worked. So we went to the ER and got a referral to an ENT there. Eventually I saw the doctor, and he did a hearing test and gave me the results to take back to Colorado.
Once we got back, I made an appointment with an ENT here, and more tests were done. The doctor ordered an MRI, and I saw a neurologist as well, because he determined that my hearing loss was central. A couple weeks passed, and I then got a letter from the neurologist in the mail suggesting that I may have Mitochrondrial Neurogastrointestinal Encephalopathy disease, or MNGIE disease.
After looking this condition up, I realized that I may have found the cause of all my problems. All of my symptoms were there. Hearing loss, extreme weight loss, dysmotility, dysphasia, neuropathy, ptosis, gastroparesis, malnutriton... I couldn't imagine it being anything else, and I was so happy to finally have an answer after 5 years.
Weeks went by, and we made arrangements to have testing done for the disease. I went to Children's Hospital in Denver to have the testing done, and to discuss the MNGIE. The samples were sent to Baylor University and to Columbia University, which is where Dr. Michio Hirano, a MNGIE specialist, works.
You can go ahead and guess that my tests came back positive.
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