Falling back into the "I don't want to do this" spiral

[tiredandthirsty]

so hopefully some of you know i am having insurance issues.  and to add insulta to injury, i just found out yesterday my potassium for this month jumped to 6.1 from 4.1 last month.  every other number seems to be in range.  but this sudden massive jump in potassium is something totally new.  i have managed to keep it under control decently well.  within range.  but a 2 point jump in one month!  i can't recall what new i have eaten in the past month that could have caused this massive spike.

can't seem to be catching a break at all.  one after another after another after another.  if it's not health related, it is money related.  insurance related.  is there no mercy for people like us?  to be honest, i am falling into the spiral of "i don't want to this anymore".  i literally HATE going to dialysis.  i HATE getting stuck.  i HATE everything about it.  i dread getting out of the car and walking into the clinic.  i sit in my car for 5-10 minutes once i get there seriously contemplating going back home everyday.  literally everyday.  i rarely use the word hate but in this case i do HATE everything.  in all honesty, i just want to go away peacefully.  sometimes i secretly wish they would tell me i have some sort of terminal illness where i would have so many days to live.  i think right now i would be elated if i get such news because i would at least know my time is coming to an end and i will soon be released from this torturous prison of a body.   . 

i am told repeatedly to have faith.  but it seems He has forgotten people like us.  it seems He enjoys rubbing salt into the wounds and watch us wriggle in pain. 

[Rerun]

They take labs once a month... so if you see a high number... it has already changed.  It is not like we get immediate results.  By the time I get my labs back, it was a week ago and 3 dialysis sessions later.  Yeah, so pull back on the dairy, and fruits and maybe chocolate.  It will be fine by next month.  Also, if you are on a 3k you may need to be on a 2K to pull a little more Potassium out.  I would love to be on a 1K but they don't do that anymore.

God does love us.  And in the end we get to go live with Him.  Nothing on Earth can be as bad as Hell for ever.  That is the promise I hang on to.  For the perfect healing... it is coming.

Hang in there.  Try and take one day at a time.  I have those times too.

[Fatkidney]

I'm so sorry you're feeling this way. You certainly have every reason to.  Your situation sucks!!!  I've been in a dark place like where you are right now and it seems like it will never get better, but it will.  Please hang in there.  I'll be praying for you.  God does love us.

[tiredandthirsty]

They take labs once a month... so if you see a high number... it has already changed.  It is not like we get immediate results.  By the time I get my labs back, it was a week ago and 3 dialysis sessions later.  Yeah, so pull back on the dairy, and fruits and maybe chocolate.  It will be fine by next month.  Also, if you are on a 3k you may need to be on a 2K to pull a little more Potassium out.  I would love to be on a 1K but they don't do that anymore.

God does love us.  And in the end we get to go live with Him.  Nothing on Earth can be as bad as Hell for ever.  That is the promise I hang on to.  For the perfect healing... it is coming.

Hang in there.  Try and take one day at a time.  I have those times too.

hi rerun.  thanks for the response. 

i am not really sure what this means "Also, if you are on a 3k you may need to be on a 2K to pull a little more Potassium out.  I would love to be on a 1K but they don't do that anymore."  bit too technical for me. 

also dairy is potassium heavy?  i only do one cup of coffee in the morning for dairy.  and i thought milk was high phosphorous.  didn't know about K+.

[tiredandthirsty]

I'm so sorry you're feeling this way. You certainly have every reason to.  Your situation sucks!!!  I've been in a dark place like where you are right now and it seems like it will never get better, but it will.  Please hang in there.  I'll be praying for you.  God does love us.

thank you fatkidney for your response.

i hope you never again have to see that dark place as well.  this is one place i would not any company. 

[Rerun]

They use 3 types of potassium baths during dialysis.  1K (K is the symbol for Potassium) takes a lot of Potassium (K) out of your blood during dialysis and they don't use it anymore.... they say it takes too much out and low potassium is just as dangerous as high potassium.  2k is the bath used on me.  It takes out more than the 3K bath.  So, if you potassium is still high next month have them look at changing your Potassium "bath".  Or at least ask what Potassium bath you are on.

Coffee with a little cream is not a potassium problem unless you have a little coffee with your cream plus they have nondairy creamers for coffee.  It would be the Milk you drink with cookies (Yummy that sounds so good)  or the cheese you have everyday (Yummy that sounds good too)  Dairy is a double whammy  high in potassium and Phosphorous. 

   

[MooseMom]

It all does sound really overwhelming, t&t.  I hope that venting here on IHD is of some help.

I'm sure God loves us, but I sometimes wonder just where His mercy is.  He baffles me, He really does.  Sometimes He scares me.  All the suffering seems so senseless and random.

[geoffcamp]

I've done pretty well until lately avoiding or hiding myself from the downward spiral. But after 10 plus years back on in center dialysis and about 15 years since I was diagnosed its hit me like a brick upside the head. I know exactly how you feel. It's awful and I wouldn't wish this on my worst enemy. I've sunk pretty deep in the last six months. In the last few weeks I've decided I either need to do something about it or die peacefully (hopefully). I'm a fighter, always have been I think that's why I've never really accepted being sick. I also think that is my problem. I never accepted or realized this was now going to be my life. So I sought out a psychologist and I've had 3 sessions. No result, not sure what I expected but I'm telling him things and how I feel and he does not seem to get it. I'm thinking I need to shake things up a bit. Get out do something anything. But when I do even wash my car for instance I'm tired, sore and bithcy. I've started 2 projects in my condo and its been a few months and neither is completely done. I was tired of being alone so I looked up some friends and went out and did some things with them. Still not satisfied. I wish I knew what to do, I wish there was a handbook for happiness with ESRD. I know only one other patient who seems to be dealing with long term ESRD and dialysis and I really don't know how he does it. Maybe he is doing same as me putting on an act that I'm OK I'm fine doing great. I've put that wall up for so long I have no idea what to do as its crumbling right in front of me now. I truly wish I had words of wisdom or knowledge to share to make things better. I don't but reading your post reminds me I'm not the only one in the world feeling this way. I'm not a religious guy so I have no answers there either I just am not a believer. I guess I'm hoping trying some new approaches will help. I took a fairly large consulting job and I can't concentrate and I'm constantly procrastinating. I'm pretty sure I'll get fired or just never finish what is really a good opportunity. Nothing seems to stimulate me any longer. I can't seem to want to do anything but sleep. My family has begun to see it in me and that feels like shit because they have done so much to help me deal with this. I hate to disappoint them but I feel like I have no idenity. I'm lost and my brain just doesn't seem to work like it used to. It's probably from lack of stimulation. I was laid off from a full time job in 2009 and since then I've really seemed to go downhill faster and faster. I know I'm not much help here but your not the only one! Unfortunately. Maybe we should kick around some ideas or things we can do to stop this slide. Have you sought out help?  Maybe you will find someone who can help. It's getting to be summer and I was thinking I need to just get out in the sun. I'm hoping to find a way to cope better. Get more done... Actually finish something. Do my work. I'm open to any suggestions. A lot of us have been here how did you get out?  Time?  It seems like I've seen enough despair and death for a million lifetimes but I'm still here and I'm certainly not trying. About the only thing I do the way I'm suppose to is go to my treatments. And I think I only do that out of routine. At this point I don't even believe a transplant would help. What would I do??  Geez I'm 43 with a 15 year fog behind me. UGH!!  I hate this crap too.........

[Angiepkd]

 Oh t &t, I really feel for you going through all of this.  I have been struggling lately, too.  Sometimes I feel like the only thing keeping me going is the routine of it all. Doctor's appointments, clinic visits, dialysis 5 days a week.  I did not expect to feel like this.  I have known this was coming for most of my life.  I watched my dad and brother on dialysis, and thought I could do it without issue.  It's not hard.  Why do I feel so down about it all?  I am not a quitter.  I have family and friends who love me and need me.  I agree with Geoff, maybe we just need to get outside in the sun for a while.  I am considering taking a vacation.  The insurance, bills, chores, doctor's appointments be damned.  I need to head South for a week on the beach.  I am thinking Charleston, SC.  I love it there and haven't been in a few years.  Please hang in there and know you are not alone!  Sometimes I have found it's darkest before the dawn (cliche, I know).  That is what keeps me going.  When I have felt like I couldn't take any more, something gets me through it.  I like to think it's my dad or someone else I loved, helping me from heaven.  I am in need of some of that divine intervention now.  I hope we all find something to hang onto through these dark times! 

[tiredandthirsty]

I've done pretty well until lately avoiding or hiding myself from the downward spiral. But after 10 plus years back on in center dialysis and about 15 years since I was diagnosed its hit me like a brick upside the head. I know exactly how you feel. It's awful and I wouldn't wish this on my worst enemy. I've sunk pretty deep in the last six months. In the last few weeks I've decided I either need to do something about it or die peacefully (hopefully). I'm a fighter, always have been I think that's why I've never really accepted being sick. I also think that is my problem. I never accepted or realized this was now going to be my life. So I sought out a psychologist and I've had 3 sessions. No result, not sure what I expected but I'm telling him things and how I feel and he does not seem to get it. I'm thinking I need to shake things up a bit. Get out do something anything. But when I do even wash my car for instance I'm tired, sore and bithcy. I've started 2 projects in my condo and its been a few months and neither is completely done. I was tired of being alone so I looked up some friends and went out and did some things with them. Still not satisfied. I wish I knew what to do, I wish there was a handbook for happiness with ESRD. I know only one other patient who seems to be dealing with long term ESRD and dialysis and I really don't know how he does it. Maybe he is doing same as me putting on an act that I'm OK I'm fine doing great. I've put that wall up for so long I have no idea what to do as its crumbling right in front of me now. I truly wish I had words of wisdom or knowledge to share to make things better. I don't but reading your post reminds me I'm not the only one in the world feeling this way. I'm not a religious guy so I have no answers there either I just am not a believer. I guess I'm hoping trying some new approaches will help. I took a fairly large consulting job and I can't concentrate and I'm constantly procrastinating. I'm pretty sure I'll get fired or just never finish what is really a good opportunity. Nothing seems to stimulate me any longer. I can't seem to want to do anything but sleep. My family has begun to see it in me and that feels like shit because they have done so much to help me deal with this. I hate to disappoint them but I feel like I have no idenity. I'm lost and my brain just doesn't seem to work like it used to. It's probably from lack of stimulation. I was laid off from a full time job in 2009 and since then I've really seemed to go downhill faster and faster. I know I'm not much help here but your not the only one! Unfortunately. Maybe we should kick around some ideas or things we can do to stop this slide. Have you sought out help?  Maybe you will find someone who can help. It's getting to be summer and I was thinking I need to just get out in the sun. I'm hoping to find a way to cope better. Get more done... Actually finish something. Do my work. I'm open to any suggestions. A lot of us have been here how did you get out?  Time?  It seems like I've seen enough despair and death for a million lifetimes but I'm still here and I'm certainly not trying. About the only thing I do the way I'm suppose to is go to my treatments. And I think I only do that out of routine. At this point I don't even believe a transplant would help. What would I do??  Geez I'm 43 with a 15 year fog behind me. UGH!!  I hate this crap too.........

hi geoffcamp.  thanks a lot for writing.

first off, my hats off to you for managing to go through this for 15 years.  i am getting over 50% of your current symptoms and i have been doing this for just over a year.  can't focus properly, procrastinating, sometimes just wanting to close my computer and chuck it out of the window, feeling of tiredness but still  having to keep going because things need to be done or else the manager will send a nastygram. Tuesday night i sent my last work related email at 10:57 PM.  that's when the day ended for me workwise. 

 i have completely gone into a shell and cut off contact with most of the people i used to talk to on a regular basis because i don't want to tell anyone what has been happening.  i don't want them checking up on me every so often as i don't want to be reminded i am broken over and over again.  I get enough reminders via lousy feeling, needles, my two massive hernias etc every day.  so one day i simply disappeared.  there are two or three people who actually make an effort to keep in touch with me.  so i have no one to talk to as well.  rather i am not the talking person either.  i usually don't bother anyone with my problems and keep things to myself.  this board is actually my only form of proper release, and this is the first board i have ever posted on since undergrad school. 

I was telling a few things to one of the nurses in the clinic the other day and she went and told the social worker and she came into my room and wanted to "discuss" things.  i said i have to get on a conference call and can't do it right now.  i didn't want to "discuss" things.  go away.  everytime i walk into the clinic, my face tells the story because my mood is completely dead.  i have been told "one can look at your face and tell how much you hate being here".  my face most of the times is very reflective of my internal mood.  and i guess my grave dislike of dialysis comes through when i enter.  so the nurse asked what was going on and i told her a few things out of disgust (for dialysis of course). and she went off and told the social worker. now i am scared she is going to send me off to a shrink. 

i don't think i can do this for 15 years.  this is not life.  this is just living. 

[tiredandthirsty]

They use 3 types of potassium baths during dialysis.  1K (K is the symbol for Potassium) takes a lot of Potassium (K) out of your blood during dialysis and they don't use it anymore.... they say it takes too much out and low potassium is just as dangerous as high potassium.  2k is the bath used on me.  It takes out more than the 3K bath.  So, if you potassium is still high next month have them look at changing your Potassium "bath".  Or at least ask what Potassium bath you are on.

Coffee with a little cream is not a potassium problem unless you have a little coffee with your cream plus they have nondairy creamers for coffee.  It would be the Milk you drink with cookies (Yummy that sounds so good)  or the cheese you have everyday (Yummy that sounds good too)  Dairy is a double whammy  high in potassium and Phosphorous. 

   

Hi Rerun.  thanks for the explanation.

Yes i do understand that now that you have elaborated a bit :-).  I already run on the 1K bath.  i actually drink one cup of coffee (whole milk, sugar, coffee and a little bit of water) in the morning.  after that i do not eat any cheese, no milk, no chocolate or cookies.  AT ALL.  i don't think i have had a proper chocolate in about a year or so.  i do eat dumdums once in a while.  the clinic sometimes gives them out if the phosphorous is good on the labs.  i like dumdums. 

they did the K test again yesterday so i will find out monday what it is.  i will provide an update on monday or tuesday on what the result is.

[tiredandthirsty]

Oh t &t, I really feel for you going through all of this.  I have been struggling lately, too.  Sometimes I feel like the only thing keeping me going is the routine of it all. Doctor's appointments, clinic visits, dialysis 5 days a week.  I did not expect to feel like this.  I have known this was coming for most of my life.  I watched my dad and brother on dialysis, and thought I could do it without issue.  It's not hard.  Why do I feel so down about it all?  I am not a quitter.  I have family and friends who love me and need me.  I agree with Geoff, maybe we just need to get outside in the sun for a while.  I am considering taking a vacation.  The insurance, bills, chores, doctor's appointments be damned.  I need to head South for a week on the beach.  I am thinking Charleston, SC.  I love it there and haven't been in a few years.  Please hang in there and know you are not alone!  Sometimes I have found it's darkest before the dawn (cliche, I know).  That is what keeps me going.  When I have felt like I couldn't take any more, something gets me through it.  I like to think it's my dad or someone else I loved, helping me from heaven.  I am in need of some of that divine intervention now.  I hope we all find something to hang onto through these dark times!

thank you angie. 

where i live, even the sun seems angry at me.  it has been raining/drizzling everyday and the sun hides in the clouds most of the time. 

I am actually IN the SOUTH!  Charleston is an awesome spot.  all my undergrad friends live/work there.  i used to go there once in a while.  but nothing in the past two years.  definitely a good choice for a nice vacation. 

[Angiepkd]

thank you angie. 

where i live, even the sun seems angry at me.  it has been raining/drizzling everyday and the sun hides in the clouds most of the time. 

I am actually IN the SOUTH!  Charleston is an awesome spot.  all my undergrad friends live/work there.  i used to go there once in a while.  but nothing in the past two years.  definitely a good choice for a nice vacation. 

I live in Ohio, and this has been the crappiest spring in years.  Rain, rain, rain, gloomy, cold, yuck!  58 degrees and rain again today.  I talked to my husband about a little vacation last night.  He spent several years working in Charleston and would love to go back.  Sometimes, just having an escape plan makes you feel better.  Hang in there!  Summer is going to get here, and then you can listen to me complain about the oppressive heat lol!  Not sure when I became a whiner, but this site has really brought out that side of me.  Guess the freedom of being able to vent without feeling bad about it is kind of freeing.










EDITED: Fixed quote tag error- kitkatz- Moderator