Drained of everything...

[PrimeTimer]

Perhaps this is more about freedom and having limited energy versus unlimited energy. I have Fibromyalgia and have days/weeks where I can't always do everything I want/need to do and instead, have to pace myself. Just when I made some adjustments, I turned around and have had to make even more adjustments. Meanwhile, my husband has Stage 5 ESRD and altho he's still able to work fulltime, he's had to pace himself too. There are days when we just cannot do things like we use to and it is very very frustrating and even depressing. In a way, we feel like it's a loss of freedom. We don't like feeling limited to being able to do only certain things in a day. I don't like having to pick and choose what to do from day to day either. I was always the type that would do a million things in a day and felt good about it but not anymore. My body just will not let me and I've had to learn to accept that. I've had to learn that I can make plans but when the day comes, I might not feel up to it and have to cancel my plans. And because of ESRD, my husband has had to learn the same. We both get fed up with having to pace ourselves or to find ourselves exhausted. It can be downright maddening. But that's what we do. We trade off doing one thing for another and try not to make ourselves feel bad if we have to let some things slide for a while. Sooner or later a day comes when we're able to do a little more. It's all about reserving our energy for immediate needs. It's very hard to accept this as our new lifestyle but it's better than not being able to do anything at all. We still have our independence and able to prioritize and make our own decisions. We still have that freedom and that still feels good to us.   

[beckums70]

The powers that be definitely do not make it easy on those of us with serious health problems (disabilities) to continue working.  I think the stress of all the red-tape and loop holes we have to navigate in order to make a living and have a decent quality of life are part of what ends up getting me exhausted sometimes.  I know y'all understand what it's like to get mountains of mail from Medicare and Social Security, and last week I got this huge packet from SSDI where they want paystubs from the entire past YEAR.  I don't even get pay stubs, so I've had to ask my supervisor to obtain those for me, and who knows how long that will take.  So now I'm worried my benefit will get interrupted or delayed, even though SSDI was aware that I was working and has my tax return for last year (the only full year I've worked since starting dialysis). 

Putting my car in the shop tomorrow and I'm extremely worried about how much that repair bill is going to be.  I have a little bit of money in savings, but if this costs anywhere near what I think it will, my savings will be wiped out.  I have a friend who has offered a loan and I might take him up on it, rather than wiping out my savings.  That way I can pay for the repair out of my regular income and not touch the savings, in case there is a delay in my social security benefit as a result of this insane review. 

On a good note, things at my job are going well and my hard work over the last year and a half is starting to really pay off.  I feel good about that, although it won't result in more pay or anything else substantial.  It does give me satisfaction and I find my work rewarding, and that's something.

I am thinking about what you all are saying about giving my family some limits on my time and energy, as well as others in my life.  It's funny that my job is to create fun recreational experiences for other people, yet I never get a chance to create fun recreational experiences for myself or my son.  That's really kind of sucky.  I want to be able to enjoy my life, not just my job.

I think a lot of people don't understand how having a chronic illness impacts your freedom to live life as you wish.  I find that I compare myself to other people my age, and feel completely astounded that a mom can work all day, pick up her kid, cook a meal, help with homework, make the kid bathe and get ready for bed, clean up the dinner dishes, do laundry and THEN stay up until 11:00 watching TV.  I used to do all those things, but now I'm lucky to get to the getting my kid home, part.  We often eat what I call "easy" meals, or eat out because I just don't have the energy to cook, clean, and then do all the other "evening stuff" every day.  Tonight I have to go back to work at 8:00 to set up the building for a concert tomorrow morning.  I really dread that, but it can't be done any other time.  I have at least learned to enlist the help of my clients, and my son in law is also going to help.  Otherwise, I'd never be able to get it all done today.

Thanks for your encouragement and understanding.  Those are things I don't find often in my world

[Fabkiwi06]

I found this story/site on this site when I first joined and I bookmarked it. It has been really helpful in trying to explain to well meaning family and friends who don't really understand how chronic illnesses effect us.

It's called the "Spoon Theory". http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Some days you have plenty of spoons. Some days you don't. Sometimes you can wash and reuse them... and sometimes you didn't do the dishes the night before so you're starting a little short.

[beckums70]

I have read that before.  It does make a lot of sense in a way.

[Simon Dog]

In broadly simplistic terms, there are 2 kinds of people in this world: givers and takers.

Hmm..... I seem to remember makers vs. takers in discussing Trump v. Clinton 

[kickingandscreaming]

   Hmm..... I seem to remember makers vs. takers in discussing Trump v. Clinton

That was YOUR language.  Here, we are talking about relationships not money.

[SutureSelf]

DaVita nurses and social worker do not seem to "get it" at all.  I think I am one of the youngest patients they have and possibly the only patient with a young child and a job.  They seem to not understand that when I have a doctor appointment at 2:30 I'm rushing like hell to get there because I don't get off work until after 1:00 and work/live about 40 minutes from the clinic, and that's on a good day without a ton of traffic.  Then they keep scheduling my labs for the first Wednesday of the month, which happens to also be the day I have a monthly staff meeting at our main office which is about 20 miles from where I work every day, and about 10 miles from the clinic.  So I rush to the clinic to get blood drawn, which takes a long time some days because I'm not an easy stick, and then I have to hurry to my meeting after that.  And they wonder why my BP is sky high every time I come in!  On top of that, I have one nurse who bruises me terribly every time she draws blood, leaving me having to answer a lot of questions from my seniors co-workers. 

They don't get that I can't do a 24 hour urine specimen on Monday because I'm at work most of the day or that I can't run home to let the Baxter guy in when he shows up 3 hours before the scheduled time, while I'm still at work, although I've told Baxter repeatedly I cannot accept deliveries before 1:30--and that's pushing it.  A few times, they've shown up early and unpacked my stuff on the front porch, so me and my small son have to bring all those heavy boxes in and put them away ourselves.  It's really ridiculous.

It must be fairly uncommon for peole to continue working while on dialysis?  Or at least it seems that way where I am because I am treated like some kind of strange specimen that they just can't understand.

There is no reason why your monthly blood draw can't be changed to Tuesdays or Thursdays. Do T/T/S clinic patients come back in on Wed. to get their monthlys done?  Of course not.  An accommodation can be made for you.  Same with the 24 hour urine speciman. Talk with your FA about working with you on appts.  And if not, talk with your nephrologist.  Remind him/her that one of the main advantages of home treatment - it's (supposedly) more convenient for maintaining a work schedule.

As far as your problem with Baxter...Can you not ask a neighbor to help bring your supplies in the house on those days they deliver when you're not at home?  Have you gone up the food chain at Baxter about when you need supplies delivered and why? 

An agency that could help you with these problems is the ESRD Network for your state.  ESRD Networks are semi-governmental agencies contracted by CMS with one of their mandates being to oversee dialysis care provided by the clinics.  It includes both incenter and home treatment.

http://esrdnetworks.org/membership/esrd-networks

Hope you find these suggestions helpful. - SutureSelf

[kickingandscreaming]

There is no reason why your clinic should be able to read your mind-- to know that you have other pressures--unless you educate them.  You are one of many patients that they manage, all of whom have some demands on them.  Here again, you are expecting others to know when you have a need (special or not) and to unilaterally be looking out for you. Not gonna happen that way. You have to advocate for your own needs.

[Simon Dog]

   Hmm..... I seem to remember makers vs. takers in discussing Trump v. Clinton

That was YOUR language.  Here, we are talking about relationships not money.

Same concept, different variables    And, I do not take credit for inventing the term "makers v. takers".

[Simon Dog]

It's called the "Spoon Theory". http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

In my circles, "losing ones spoon" has been an expression for doing something clumsy or stupid.  It came from Cool Hand Luke w/Paul Newman.

[beckums70]

There is no reason why your clinic should be able to read your mind-- to know that you have other pressures--unless you educate them.  You are one of many patients that they manage, all of whom have some demands on them.  Here again, you are expecting others to know when you have a need (special or not) and to unilaterally be looking out for you. Not gonna happen that way. You have to advocate for your own needs.

Trust me, they know as much about my life as I know and I do advocate for myself.  If I didn't I couldn't have made it to this point.  The fact that they KNOW these things doesn't make them more CONSIDERATE of them. 

My clinic only does labs on Wednesdays.  I work on Wednesday, and I have repeatedly reminded them that I have an afternoon meeting on the first Wednesday of every month.  They still try to make my appointment on the first Wednesday.  If I'm running behind for an appointment because I'm coming from work (I think I mentioned it's a long drive to the clinic from work) they start texting me rude texts about how I'm holding them up before I"m even late getting there.  Last time i started getting texts 15 minutes before my appointment time and I was about 10 minutes out.  I am not late for every appointment. Perhaps if I were, I would understand their texting and calling me early, but since I'm not, I think it is rude.

I don't know when I've indicated that I expect other people to read my mind?  I find your comments rude and unnecessary.

[beckums70]

DaVita nurses and social worker do not seem to "get it" at all.  I think I am one of the youngest patients they have and possibly the only patient with a young child and a job.  They seem to not understand that when I have a doctor appointment at 2:30 I'm rushing like hell to get there because I don't get off work until after 1:00 and work/live about 40 minutes from the clinic, and that's on a good day without a ton of traffic.  Then they keep scheduling my labs for the first Wednesday of the month, which happens to also be the day I have a monthly staff meeting at our main office which is about 20 miles from where I work every day, and about 10 miles from the clinic.  So I rush to the clinic to get blood drawn, which takes a long time some days because I'm not an easy stick, and then I have to hurry to my meeting after that.  And they wonder why my BP is sky high every time I come in!  On top of that, I have one nurse who bruises me terribly every time she draws blood, leaving me having to answer a lot of questions from my seniors co-workers. 

They don't get that I can't do a 24 hour urine specimen on Monday because I'm at work most of the day or that I can't run home to let the Baxter guy in when he shows up 3 hours before the scheduled time, while I'm still at work, although I've told Baxter repeatedly I cannot accept deliveries before 1:30--and that's pushing it.  A few times, they've shown up early and unpacked my stuff on the front porch, so me and my small son have to bring all those heavy boxes in and put them away ourselves.  It's really ridiculous.

It must be fairly uncommon for peole to continue working while on dialysis?  Or at least it seems that way where I am because I am treated like some kind of strange specimen that they just can't understand.

There is no reason why your monthly blood draw can't be changed to Tuesdays or Thursdays. Do T/T/S clinic patients come back in on Wed. to get their monthlys done?  Of course not.  An accommodation can be made for you.  Same with the 24 hour urine speciman. Talk with your FA about working with you on appts.  And if not, talk with your nephrologist.  Remind him/her that one of the main advantages of home treatment - it's (supposedly) more convenient for maintaining a work schedule.

As far as your problem with Baxter...Can you not ask a neighbor to help bring your supplies in the house on those days they deliver when you're not at home?  Have you gone up the food chain at Baxter about when you need supplies delivered and why? 

An agency that could help you with these problems is the ESRD Network for your state.  ESRD Networks are semi-governmental agencies contracted by CMS with one of their mandates being to oversee dialysis care provided by the clinics.  It includes both incenter and home treatment.

http://esrdnetworks.org/membership/esrd-networks

Hope you find these suggestions helpful. - SutureSelf

I live in the country and my only two neighbors are elderly ladies (both in their 80's) so I probably shouldn't ask them to carry in my heavy boxes.



Yes, I have talked to everyone I could possibly speak to at Baxter.  They each give me conflicting information, as do the drivers who make the deliveries and the person at the warehouse who sets up the delivery times.  One hand seems to not know what the other hand is doing.  It is so frustrating.  i have talked to my clinic as well, and they have even called Baxter on my behalf and have made complaints about my having to carry in my own supplies.  One rep that I spoke to at Baxter was so rude to me that I asked him to put me on the line with someone else who would listen to me.  He kept talking over me and was incredibly rude and I was not being rude or inappropriate with him at all. I realize you don't get far with people (even when you're angry) if you don't speak in a pleasant and friendly tone....I suppose this is just something I have to accept, since it doesn't seem like something I can change.







EDITED: Fixed quote tag error- kitkatz,Admin

[PrimeTimer]

When my husband was doing home-hemo, I had to write a letter to Fresenius about having his supplies carried inside for us. I made a copy for ourselves and gave the original to his nurse and asked that it be given or forwarded to whoever was in-charge. That worked. Perhaps a separate letter would also help you to have your lab days rescheduled to fit your work schedule. Seems to me that it would only benefit them to help their "home" patients be successful and that is what I would say in the letter. Let them know what it takes for you to be successful with your home treatments. Also, don't know if she can help you but I notice over on the Davita Forum website that people can chat or email a rep with DaVita....you might go over there to check her out, look for "KelseyATDaVita" in one of their discussion forums. Or maybe Baxter has a website that offers a rep to talk to online??? Seems you are sooo close yet sooo far.....we (my husband and I) know the feeling. You seem to be doing everything you possibly can for yourself, let DaVita and/or Baxter know of the hurdles you want to get over. I'll be sending good thoughts your way! You're almost there!

[Charlie B53]

Beckums, I don't mean to be putting your down.  It is difficult enough keeping up with a child, job, and Dialysis.  Especially when it sounds like people are not listening and making better attempt to help schedule around your commitments.

You need to learn how to use the system to make waves in higher places.   Like most every other job in the world, we are all peons and have to answer to someone higher up.  The trick is to make effective complaint at a high enough level that by the time it trickles down to the one that should be helping you it has become a tidal wave.

Phone calls don't always work.  Depending on who you get to it can be simply a message that gets trashed.  Letters most often get results.  The sad part about a letter is it is slow.  You are still rushed until the results occur.

[Simon Dog]

When I was on PD the Fresenius home care RN would book me for the blood draw at any day of the week I wanted, as long as she was going to be in the clinic.    I never even knew which days were "blood draw days.".