Rachael M, here. I love Rachel's idea for alphabet posts! Starting off with A today.
Appetite.
When I first started PD, I did manual exchanges at home every day. Four times a day. I almost always had about 1500 to 2000 ml of solution in my gut at any given time. Rarely did I want to eat.
I started manipulating my fills a bit when I figured it out. Having a full bag on board was making me feel like I had just eaten Thanksgiving dinner. All day long. So, for my afternoon exchange, I would cut it down to 1000 ml of solution and I got my appetite back.
Now that I am using the cycler, I get pretty intense exchanges overnight and can go light during the day. I usually have about 750 ml in me during the day. And my appetite is good.
Maybe TOO good.
But it's the holiday season. So, yeah, I'm eating some bad, bad goodies.
Ah well. I'm happy to be hungry!
Having a low fill volume during the day has allowed me to have a fairly normal eating schedule again. Walking around all day with a completely full belly can be quite uncomfortable. One more reason I'm happy about the cycler. Not only does it take care of the dialysis at night, but I can adjust what I'm carrying during the day.
So, that's A. I think I know what B will be. Gotta follow Rachel's lead and talk about Baxter.
Until next time!
2014-12-19
2014-11-11
Baxter
I love Baxter, I really do. Their customer support people are wonderful, I have an amazing delivery guy, and really - they are the company that keeps me alive. :)
My issue with Baxter is this: THE SIZE OF THE FREAKING DIALYSIS MACHINE! Honestly, there is so much amazing technology out there - why do our PD machines weigh 40 pounds?!?! Are you kidding me? How am I supposed to travel with this beast? Oh, and let's not forget the fact that dialysis patients aren't really allowed to lift more than 10-15 pounds - and I have to lug this monster around??
I HATE that travelling is so difficult. I am going to Calgary for 3 nights (4 days) in December and I've made all the arrangements to have my stuff shipped to the hotel where I'm staying (yay, thanks Baxter!), but oh do I HATE having to carry that damn machine.
So, Baxter, I hope you see this post. I hope you understand REALLY UNDERSTAND how awful dialysis already is. Having a non-portable machine does not help! So, please, GET TO WORK on something that is small and compact and fits neatly into a backpack. And weighs, like, 3-5 pounds. Because I'd really like to go to Europe next year and I'm still anti-transplant, I'll be lugging that beast with me - which does not make me happy.
PS - if you have a ton of money, send it to Baxter and tell them to get working on a teeny tiny machine for PD patients. Please and thanks.
Sooooo the "B" post was a bit of a rant. I'm not sure what "C" is going to be yet. "D" has been pretty easy to find topics for, so you might get multiple D posts instead. :)
RachelT
My issue with Baxter is this: THE SIZE OF THE FREAKING DIALYSIS MACHINE! Honestly, there is so much amazing technology out there - why do our PD machines weigh 40 pounds?!?! Are you kidding me? How am I supposed to travel with this beast? Oh, and let's not forget the fact that dialysis patients aren't really allowed to lift more than 10-15 pounds - and I have to lug this monster around??
I HATE that travelling is so difficult. I am going to Calgary for 3 nights (4 days) in December and I've made all the arrangements to have my stuff shipped to the hotel where I'm staying (yay, thanks Baxter!), but oh do I HATE having to carry that damn machine.
So, Baxter, I hope you see this post. I hope you understand REALLY UNDERSTAND how awful dialysis already is. Having a non-portable machine does not help! So, please, GET TO WORK on something that is small and compact and fits neatly into a backpack. And weighs, like, 3-5 pounds. Because I'd really like to go to Europe next year and I'm still anti-transplant, I'll be lugging that beast with me - which does not make me happy.
PS - if you have a ton of money, send it to Baxter and tell them to get working on a teeny tiny machine for PD patients. Please and thanks.
Sooooo the "B" post was a bit of a rant. I'm not sure what "C" is going to be yet. "D" has been pretty easy to find topics for, so you might get multiple D posts instead. :)
RachelT
2014-10-14
When we read we begin with ABC...
Rachel here - so "writer's block" (I probably mean laziness for myself!!) has lasted almost a year. Yikes! Sorry about that folks. I talked to Rachael at the end of the summer about a blogging idea I had to give us some ideas, but I haven't taken the time to put it into action for myself.
Writing consistently simply involves writing consistently, right? :) That's what I'm aiming at for myself. I want to be consistent about blogging and try and improve my style and voice and all that fun writing stuff. The idea of writing is always so much grander than the practice - or discipline! - of writing.
The plan for giving ourselves writing ideas is to blog through the alphabet. If I write about "A," Rachael might also write about "A," but she may also carry on to "B." Pretty simple, but I think it'll work for us.
My first topic is going to be about ANGER.
Anger is OK. Anger is natural. Throughout your dialysis process - whatever stage you're at - you're likely going to feel downright pissed off. Go with that. Let the anger happen and work your way through it. How you work through it is completely up to you. You might need to vent to a family member, or you may need to see a counsellor. You might want to keep your anger to yourself and let it out in a journal, or punch it out onto a pillow. You might walk daily and listen to some hard driving beats. Find your outlet and then for goodness' sake, use it! If one thing doesn't seem to work for you, try something else. There is no right way, no wrong way to handle your anger. OK. wait, lemme rephrase that. Don't beat anyone up. Don't hurt anyone. If you say words in anger, apologize. Your disease does not give you a free pass to be an asshole, so 'fess up, apologize, and learn from whatever happened.
I haven't had any extreme cases of anger through my dialysis experience, but every once in awhile, I feel mildly pissed off. Like the other night I was sitting in bed playing Farmville before bed and I kept thinking over and over "I really don't want this to be my life anymore." And the feeling was distinctly pissy. None of us want this life for ourselves. If I wouldn't have ended up on dialysis, I would have simply worked long enough to save enough money to buy myself a plane ticket out of Canada and gone to Singapore, or even back to Japan. However, this life happened and until I am ready for a transplant, this is the life I'm living. So there's very little I can do about the anger other than remember that I do have outlets and that I can choose my own attitude about the whole thing. So can you. You can choose to let your anger fester and consume you, or you can treat your mental health with the same respect as your physical health.
-RT
Writing consistently simply involves writing consistently, right? :) That's what I'm aiming at for myself. I want to be consistent about blogging and try and improve my style and voice and all that fun writing stuff. The idea of writing is always so much grander than the practice - or discipline! - of writing.
The plan for giving ourselves writing ideas is to blog through the alphabet. If I write about "A," Rachael might also write about "A," but she may also carry on to "B." Pretty simple, but I think it'll work for us.
My first topic is going to be about ANGER.
Anger is OK. Anger is natural. Throughout your dialysis process - whatever stage you're at - you're likely going to feel downright pissed off. Go with that. Let the anger happen and work your way through it. How you work through it is completely up to you. You might need to vent to a family member, or you may need to see a counsellor. You might want to keep your anger to yourself and let it out in a journal, or punch it out onto a pillow. You might walk daily and listen to some hard driving beats. Find your outlet and then for goodness' sake, use it! If one thing doesn't seem to work for you, try something else. There is no right way, no wrong way to handle your anger. OK. wait, lemme rephrase that. Don't beat anyone up. Don't hurt anyone. If you say words in anger, apologize. Your disease does not give you a free pass to be an asshole, so 'fess up, apologize, and learn from whatever happened.
I haven't had any extreme cases of anger through my dialysis experience, but every once in awhile, I feel mildly pissed off. Like the other night I was sitting in bed playing Farmville before bed and I kept thinking over and over "I really don't want this to be my life anymore." And the feeling was distinctly pissy. None of us want this life for ourselves. If I wouldn't have ended up on dialysis, I would have simply worked long enough to save enough money to buy myself a plane ticket out of Canada and gone to Singapore, or even back to Japan. However, this life happened and until I am ready for a transplant, this is the life I'm living. So there's very little I can do about the anger other than remember that I do have outlets and that I can choose my own attitude about the whole thing. So can you. You can choose to let your anger fester and consume you, or you can treat your mental health with the same respect as your physical health.
-RT
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