i had a breakdown
i broke
any pressure i shudder and crack
any day without ativan is not in my immediate future
there have been some dark days
-i just never thought i'd fall this far
my brain is tired
i cry alot
when is efuckingnough?
Monday, March 1, 2010
Thursday, February 11, 2010
coming up on 2 years since my transplant - i know how fortunate i am
and so thankful for winning this lottery ticket
with that being said
im a fucking wreck
i have the bk virus so i will lose this kidney sooner than later
this is my 3rd
the idea of it all over again - well it's a bit much for me right now
this disease was not supposed to win
i always felt i had an agreement with my body & my mind
we'd do this together no matter what
but unfortunately my mind has packed it's bags and heading for calmer waters
who can blame it?
and so thankful for winning this lottery ticket
with that being said
im a fucking wreck
i have the bk virus so i will lose this kidney sooner than later
this is my 3rd
the idea of it all over again - well it's a bit much for me right now
this disease was not supposed to win
i always felt i had an agreement with my body & my mind
we'd do this together no matter what
but unfortunately my mind has packed it's bags and heading for calmer waters
who can blame it?
Wednesday, February 27, 2008
patient etiquette
so i was a secretary for the past 8 years - i was good at my job - i knew what it meant to be on the other end of the phone.. and was very empethetic to those who really were sick -
but man there were a few patients who could send me to the moon just by the sound of their voice - their was inevitably the terrified, already maimed by society patient who would fall into the victim roll as though there were no other parts to play - these people aggravated me most - illness is an opportunity to pull yourself through extraordinary situations..
i always equated it to being a warrior - i had to figure out how to become a body of armor to overcome the physicalness of being sick, the experience of real horrific pain, and a ticket to ride the emotional roller coaster of success and defeat - you have to figure it out for yourself - you have to figure out a way to get thru it because the situation is not going to change
on a lighter note - a few suggestions as a patient when dealing with doctors offices:
please have a calendar in front of you when calling to make an appointment - please don't call only to tell me you have to go downstairs to look at your calendar - BE PREPARED!
please do not assume you are getting a call back with test results - especially in a busy office - be proactive - call and ask for an update
leave one message, do not keep calling back - allow 24 hours for a call back from the office unless of course it is an emergency
and be pleasant to the other person on the phone - they are doing the best they can - yelling, smarmy remarks, and flat out rudeness gets you know where
but man there were a few patients who could send me to the moon just by the sound of their voice - their was inevitably the terrified, already maimed by society patient who would fall into the victim roll as though there were no other parts to play - these people aggravated me most - illness is an opportunity to pull yourself through extraordinary situations..
i always equated it to being a warrior - i had to figure out how to become a body of armor to overcome the physicalness of being sick, the experience of real horrific pain, and a ticket to ride the emotional roller coaster of success and defeat - you have to figure it out for yourself - you have to figure out a way to get thru it because the situation is not going to change
on a lighter note - a few suggestions as a patient when dealing with doctors offices:
please have a calendar in front of you when calling to make an appointment - please don't call only to tell me you have to go downstairs to look at your calendar - BE PREPARED!
please do not assume you are getting a call back with test results - especially in a busy office - be proactive - call and ask for an update
leave one message, do not keep calling back - allow 24 hours for a call back from the office unless of course it is an emergency
and be pleasant to the other person on the phone - they are doing the best they can - yelling, smarmy remarks, and flat out rudeness gets you know where
Tuesday, February 26, 2008
medicare/social security
when you are diagnosed with a chronic illness there will be chunks of time you will not be able to work - because of this, the government does provide financial assistance - you just have to sign your life away and sell your mother to get it..
dealing with social security is one of the most trying aspects of being a patient - not only are you dealing with your illness - you have to deal with people who in my experience are rude, incompetent and misinformed - for example, when this all started i went to my local office to see what i could do to start receiving benefits - i was told i owe back pay from 1990 - even though i never received a letter regarding this - oh wait - yes, yes i was mailed notification of this but they had me living at an address i have never lived, in a completely different part of the state. i called just last week to find out i was dead - since i was "deceased"in their system - i mean you have to laugh at all this because it is so, so ridiculous - i can not imagine how the elderly or folks who speak english as a second language maneuver themselves in this web - there has to be a way to make this easier or at least more pleaseant
i would suggest - try to remain calm and thoughtful when speaking to them on the phone - if they do not like your tone - they can hang up on you with no repercussion - this has happened to me twice (nice huh?) - even though they say call is recorded - i found out later this is not always the case
you may think bringing a copy of your medical records would be helpful - wrong -you sign a medical release form and they request your recs - so they know all reports are legitimate
keep EVERYTHING they send you, DOCUMENT all phone calls, date of your call, name of the person you spoke to
customer service is pretty much the last thing on their list - when i go to the local office the girls at the window barely raise their head - let alone say hello - i know that job can not be easy - i am sure they get screamed at many times during the day from the melting pot of clientèle - but can they not treat me as i am trying to treat them? a little kindness, a smile, can go along way when you are dealing with a very frustrating situation
dealing with social security is one of the most trying aspects of being a patient - not only are you dealing with your illness - you have to deal with people who in my experience are rude, incompetent and misinformed - for example, when this all started i went to my local office to see what i could do to start receiving benefits - i was told i owe back pay from 1990 - even though i never received a letter regarding this - oh wait - yes, yes i was mailed notification of this but they had me living at an address i have never lived, in a completely different part of the state. i called just last week to find out i was dead - since i was "deceased"in their system - i mean you have to laugh at all this because it is so, so ridiculous - i can not imagine how the elderly or folks who speak english as a second language maneuver themselves in this web - there has to be a way to make this easier or at least more pleaseant
i would suggest - try to remain calm and thoughtful when speaking to them on the phone - if they do not like your tone - they can hang up on you with no repercussion - this has happened to me twice (nice huh?) - even though they say call is recorded - i found out later this is not always the case
you may think bringing a copy of your medical records would be helpful - wrong -you sign a medical release form and they request your recs - so they know all reports are legitimate
keep EVERYTHING they send you, DOCUMENT all phone calls, date of your call, name of the person you spoke to
customer service is pretty much the last thing on their list - when i go to the local office the girls at the window barely raise their head - let alone say hello - i know that job can not be easy - i am sure they get screamed at many times during the day from the melting pot of clientèle - but can they not treat me as i am trying to treat them? a little kindness, a smile, can go along way when you are dealing with a very frustrating situation
Monday, February 25, 2008
peritoneal dialysis mythbusters
so i had my PD catheter placed on october 12th 2007. i need to debunk a few of the myths my doctors told me about this form of treatment
first - when you have a catheter placed - you need to take at least two weeks off. the post pain of this procedure is pretty powerful - and as with most surgeries your body is in a tail spin as to what the fuck is going on...
it also took me a bit of time to accept there was a tube hanging from my belly - this was very hard for me and i don't know why - i have scars all over my body i don't mind at all - i almost show those off - they are my battle scars - but this this was a mountain i had a hard time climbing - i am definitely on the other side now
once you have healed from the cath being placed and you start the manual exchanges - you will need to take more time off - my experience was severe back pain from my body getting used to the extra weight from the 5 pounds of dialysate solution - i was pretty incapacitated for two weeks - then i just woke up and it was gone
be prepared for your apartment or home to become inundated with close to 50 boxes of supplies - along with an IV pole, scale, and blood pressure cuff - your home is transformed into a medic station - this is really alot to get used to
your appetite may feel suppressed since you are now carrying around a belly full of fluid - i found eating smaller meals thru out the day helped - oh and on a positive note i found on hemo i could never quench my thirst - not on PD - i am never thirsty!
if you are in a relationship - this is a lot on that person (to say the least) - and you need to think of them - because it will effect whoever is in the home during this time - communication is key - let everyone vent - this form of treatment is definitely a team effort
for the past 3 weeks i have been working on the cycler - which allows me to dialyize as i sleep - now just so you understand - i was born with renal disease - i am 36 now - i have had two transplants, numerous surgeries for fistula placement, a hip replacement - i mean you name it -
i 've had it - but never in my life have i been more crazed, depressed, angry, frustrated, and pretty much just fucking pissed off since i have started on this machine
i watched a video of using the cycler and there were a few things the video misrepresented - be prepared for your bedroom to turn into a hospital room - the machine is big and rests on a high stand - when shone in the video - it is just the machine on the floor making it look a lot less obtrusive than it really is
your bed needs to be at a height of 26 inches - you will be told between 21-26 - this is wrong - 26 inches is the actual required height
with all of that said - i have to tell you i have seen the light at the end of the tunnel - i have had days i feel so so so good - it is the reason i am persevering thru all this bullshit - it is so i can get to the otherside -
i am writing this because doctors are already on that side - they have no idea what it is like - but they do have your very best interest at heart - so go ahead and jump - but be vocal, be strong - i know once i have accomplished PD dialyses there will be no mountain i can not climb.
first - when you have a catheter placed - you need to take at least two weeks off. the post pain of this procedure is pretty powerful - and as with most surgeries your body is in a tail spin as to what the fuck is going on...
it also took me a bit of time to accept there was a tube hanging from my belly - this was very hard for me and i don't know why - i have scars all over my body i don't mind at all - i almost show those off - they are my battle scars - but this this was a mountain i had a hard time climbing - i am definitely on the other side now
once you have healed from the cath being placed and you start the manual exchanges - you will need to take more time off - my experience was severe back pain from my body getting used to the extra weight from the 5 pounds of dialysate solution - i was pretty incapacitated for two weeks - then i just woke up and it was gone
be prepared for your apartment or home to become inundated with close to 50 boxes of supplies - along with an IV pole, scale, and blood pressure cuff - your home is transformed into a medic station - this is really alot to get used to
your appetite may feel suppressed since you are now carrying around a belly full of fluid - i found eating smaller meals thru out the day helped - oh and on a positive note i found on hemo i could never quench my thirst - not on PD - i am never thirsty!
if you are in a relationship - this is a lot on that person (to say the least) - and you need to think of them - because it will effect whoever is in the home during this time - communication is key - let everyone vent - this form of treatment is definitely a team effort
for the past 3 weeks i have been working on the cycler - which allows me to dialyize as i sleep - now just so you understand - i was born with renal disease - i am 36 now - i have had two transplants, numerous surgeries for fistula placement, a hip replacement - i mean you name it -
i 've had it - but never in my life have i been more crazed, depressed, angry, frustrated, and pretty much just fucking pissed off since i have started on this machine
i watched a video of using the cycler and there were a few things the video misrepresented - be prepared for your bedroom to turn into a hospital room - the machine is big and rests on a high stand - when shone in the video - it is just the machine on the floor making it look a lot less obtrusive than it really is
your bed needs to be at a height of 26 inches - you will be told between 21-26 - this is wrong - 26 inches is the actual required height
with all of that said - i have to tell you i have seen the light at the end of the tunnel - i have had days i feel so so so good - it is the reason i am persevering thru all this bullshit - it is so i can get to the otherside -
i am writing this because doctors are already on that side - they have no idea what it is like - but they do have your very best interest at heart - so go ahead and jump - but be vocal, be strong - i know once i have accomplished PD dialyses there will be no mountain i can not climb.
Thursday, November 1, 2007
Introduction
hi
my name is jen. i am dialysis patient. what does that mean? it means my kidneys do not work - so there is a machine that does the work for me.
i have been a kidney patient my whole life. i am 35 now - i have had 2 kidney transplants, a hip replaced, numerous surgeries for dialysis accesses and a few other surgeries due to side effects from my medications.
my intent with this blog is to educate folks who find themselves in the same situation as me - or possibly health professionals looking to know what it is like to be a patient.
recently i had a catheter placed in my abdomen so i can start peritoneal dialysis or home dialysis. i am still in the training stage so i have not yet dialyzed thru the catheter but i a m looking forward to this form of treatment.
it means i will not have to go to a dialysis center 3 times a week for 3 hours for my treatment,i will have more flexibility in my diet and fluid intake and overall feel better since it is a much slower dialysis process.
i was out of the patient loop for about 10 years because i had had a transplant - the kidney rejected this past April. That was tough.
however, i have always believed that everything happens for a reason - and the reason is i need to educate people - let folks know the different types of dialysis, the importance of having your voice and question health professionals, be proactive in your care and most importantly stay strong - just because i am a dialysis patient does not mean my life is over - if anything being on dialysis makes me want to accomplish more in my life.
that all for right now - i am off to dialysis!
my name is jen. i am dialysis patient. what does that mean? it means my kidneys do not work - so there is a machine that does the work for me.
i have been a kidney patient my whole life. i am 35 now - i have had 2 kidney transplants, a hip replaced, numerous surgeries for dialysis accesses and a few other surgeries due to side effects from my medications.
my intent with this blog is to educate folks who find themselves in the same situation as me - or possibly health professionals looking to know what it is like to be a patient.
recently i had a catheter placed in my abdomen so i can start peritoneal dialysis or home dialysis. i am still in the training stage so i have not yet dialyzed thru the catheter but i a m looking forward to this form of treatment.
it means i will not have to go to a dialysis center 3 times a week for 3 hours for my treatment,i will have more flexibility in my diet and fluid intake and overall feel better since it is a much slower dialysis process.
i was out of the patient loop for about 10 years because i had had a transplant - the kidney rejected this past April. That was tough.
however, i have always believed that everything happens for a reason - and the reason is i need to educate people - let folks know the different types of dialysis, the importance of having your voice and question health professionals, be proactive in your care and most importantly stay strong - just because i am a dialysis patient does not mean my life is over - if anything being on dialysis makes me want to accomplish more in my life.
that all for right now - i am off to dialysis!
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