Overwhelmed and no relief in sight

[paris]

Devon,   the doctors don't tell us their will be a grieving process.  It has helped me so much to allow myself to be mad about the situation and mourn my lose.   The tone of your post was so much better and I am glad you found some help here.  That is why the site exists---- people, people who need people, are the luckiest people in the world    Glad you have some humor too!  Sending you big hugs and hope that each day gets brighter 

[Lori1851]

Devon, 
Glad to hear you are feeling alil better. I am always here lurking on the internet. Message me anytime God gave me the gift to gab I haven't been where you are but went through it with Dustin for 12 yrs with his disease. I am not a Dr or Nurse or have anything fancy behind my name. I am simply a loving caring person and for 22 almost 23 yrs a loving and overprotective mom. Hit me up anytime!!!!

Lori/Indiana

[annabanana]

Devon, you are beautiful. To realize and admit that you can't do it alone is really big. I'm so happy that you are feeling better and so quickly, too.

I don't know how you feel, but I watched my husband give up.

I don't really know what to say, but when things get bad, I urge you to hold on to any optimism at all, even if it is slight.  I know your son will help you with that. And please don't ever ever ever think of yourself as a burden to your loved ones.

[Sunny]

Devon,
The emotions you are going through are natural. My heart goes out to you. Hang in there, you are stronger than you think.
When all else fails, remember your kid and that he needs you. That thought will get you to the next day, or the next week.
Things will work out.

[cris]

Hi Devon,
I can feel you. My Mom is 79 yrs. old but she still fights the disease. We are now a year when she started dialysis. There were lots of challenges, most of them bad, but empowering yourself with the knowledge of how to deal and hopefully combat this surely helps. Most especially coming to the IHD family. Our only weapon is the LOVE we have in the family, that keeps us strong and together in this battle.
my prayers are with you.
love,
cris

[TynyWonder]

Devon,

I soooo know what you are feeling and I have been on dialysis going on 2 years now.   I just went today for the first consult to see about getting on the transplant list and even all that feels overwhelming too me.  I even cried last night just thinking that I was even HAVING to go to a transplant consultation and I got really angry.  I too, wonder sometimes what's it all for so please do not think you are alone.   Like everyone else has said, keep coming back here and vent, vent, and vent some more!!!!    

[dkerr]

Glad you are doing better. 

[RichardMEL]

Devon,

As others have said - everything you are feeling and going with is normal. That doesn't make it easy and it doesn't make it good either, but rest assured you're not a bad person or feeling anything that shouldn't be expected. Has your doc/unit offered you any time with a social worker or counsellor to talk through your issues? That may help a little bit. Otherwise you have the IHD e-service! We listen and we relate

I'm glad you're feeling a little better and while having to do 4:15 now instead of 4 on the machine sucks (and yes, I would have laughed too!) the end result is that more dialysis WILL be better for you in the long run, and as you're still settling into it you will have ups and downs before everything is stabilised with your treatment, meds etc to get everything stable and then hopefully you will start to feel better from it.

As you said you can drive, work and do other things and try and make those the focus of your life now rather than the 13 or so hours a week you have to deal with the machine. That's what I do. I'm writing this from work (shhh don't tell my boss ) and I really apprieciate that I *can* focus on brainpower and energy on something other than staring at the UF time tick down.

You make a GREAT point about the "living dead" and people not talking etc. I try to talk to most at the unit and be animated, have a laugh etc... at least greet people. I think it's important. I know in my unit we are like a little community and you notice if people don't show up or whatever and worry. At least you got a compliment from one of the other patients... maybe you should talk to her next session?

It's very difficult having to deal with all this - specially initially... I'm sure you'll get through it and find the balance between dealing with the disease and treatments and actually living your life. I can't wait for you to change that signature back to life IS good... because it still can be.. even for us!

Hang in there mate!

[flip]

A dialysis center can be a very depressing place. You have a lot of patients in close proximity, many of whom are older and not ambulatory. It's almost like your first day of school. Soon you will get in the groove and get to know everyone. We're like a cult...blood in, blood out. Trust me, Devon, it ain't that bad once you get used to it.

[TynyWonder]

A dialysis center can be a very depressing place. You have a lot of patients in close proximity, many of whom are older and not ambulatory. It's almost like your first day of school. Soon you will get in the groove and get to know everyone. We're like a cult...blood in, blood out. Trust me, Devon, it ain't that bad once you get used to it.

But when does a person get "used to it"?  I know its all about acceptance and all that jazz but how does a person learn to accept that they have a lifetime sentence unless of course, they are fortunate enough to get a transplant.  I know I am not helping Devon much here but I am glad he brought up his thoughts because even tho I have been on dialysis going on 2 years now, I STILL wonder the very same freaking things!  Yeah, I drive too and some days can still do what I want but the bad days lately, have seem to outweigh the good days.  My fatigue is HORRIBLE!!!!  IT SUX!  IT JUST FREAKING SUX!!!!   OK    Thanks for listening to me as well!

Tammy

[devon]

Tammy, you have really zeroed into what I was feeling!  "SUX" is right.

Here's what I'm learning from all this...

Perhaps it's fitting that this should be in close proximity to Sept 11th because it's a similar situation on a very personal basis.  We've all experienced our own personal 9/11 with ESRD.  A major organ failure, followed by anger and grief.  But like those days immediately following the WTC attack, the world came together in a spontaneous moment of love and support in opposition to the attack.  Strangers came to the aide and support of strangers.

IHD is the place to find comfort, understanding, and support.  We're all in this together, allied against ESRD, a common enemy manifested as Dialysis. 

My world is what I make it.  Like dealt me a lemon (in the shape of a kidney!) and now it's my task to figure out how to make the best of this.  As I look around, it's a pretty dismal situation.  I am in the land of the "living dead" and have to make a choice of joining those around me who stare expressionless at the TV monitor for hours at a time while they exist in a comatose world for several days a week. Or, I can find the other side of that existence where life is precious and there is joy even in the midst of tragedy. 

I am consciously working to find the other side, the joy and wonder of the world after ESRD...

I'll share what I find. Perhaps that will help some?

-Devon

[TynyWonder]

Yes, please do share what you find and maybe in sharing with one another it could possibly alleviate some of this anger we both feel!  Not that you have done this Devon, but I also get tired of people saying, "oh you could be much worse, just look around".  *rolling my eyes* For one, like I don't know that already??   Second of all,  Why don't THAT person sit in our chair 3 times a week and THEN say, "you could be much worse"??!!!!!   I mean for real!!!!   Again, Devon, thanks for opening up your feelings because it is really already making me feel a little better, just for today anyway!       

~Tammy~

[Zach]

Or, I can find the other side of that existence where life is precious and there is joy even in the midst of tragedy. 

I am consciously working to find the other side, the joy and wonder of the world after ESRD...

I'm sure you'll find it.
 

[Rerun]

I think you'll find yourself taking two steps forward and one step back but you will move forward.

[devon]

Tammy,

Another thing I am learning is that it's okay to get angry about having ESRD.  I'm glad you're expressing that anger.  I am still working through my own and with the help of IHD and my friends, I am expressing it more and better.  Like you I am really pissed at my predicament.  Now I'm faced with doing something with that.  Being pissed isn't enough.

Oftentimes, like you, I find myself rolling my eyes in amazement at all the ignorance.  But in "looking around" I find I become more informed of my situation from a different and better perspective.  That is, I move from looking inward at how "I feel" about it, to how others are dealing with it.  In that small, but significant, change of perspective, I find some level of control over the overwhelming helplessness that fills me.  I am able to better understand the expression: "I thought I was unfortunate because I had no shoes until I saw the person with no feet."

This week's events have really opened up a whole side of me that I hadn't seen in many, many years.  I'm not sure what it is, what part of me it is, or where it comes from.  It's foreign so I don't understand it but it feels comfortable and safe.  It feels familiar like a stuffed animal from my childhood.  I tell myself I'm too old for that but then I need it so desperately.  It's a struggle inside me to accept it.

-Devon

[thegrammalady]

 I am able to better understand the expression: "I thought I was unfortunate because I had no shoes until I saw the person with no feet."

This week's events have really opened up a whole side of me that I hadn't seen in many, many years.  I'm not sure what it is, what part of me it is, or where it comes from.  It's foreign so I don't understand it but it feels comfortable and safe.  It feels familiar like a stuffed animal from my childhood.  I tell myself I'm too old for that but then I need it so desperately.  It's a struggle inside me to accept it.

-Devon

Devon,

it comes from the inner strength that we all tend to forget we have. the hand of God, if you will.  it is the beginning of acceptance. however acceptance doesn't mean you are going to sit back and do nothing.

i have a handicapped child (now 24) i'm extremely grateful for kevin. and when i started feeling depressed about having a child with serious disabilities i would remember (and say a prayer for) the mother i knew who's son's shortest seizure (ever) lasted 45 minutes. it only lasted 45 minutes because that was how long it took her to get him the emergency room to have the seizure chemically stopped. and i was grateful that was something i didn't have to deal with.  my mother used to tell me "you can find something good in everything" (among other things i hated listening to her say) but i've learned she's right.

keep moving forward.

[paris]

Devon, you posts are beautifully written.    

[Orange County Ca]

Part of my adjustment to dialysis was anger over the fact that everyone else in the world was getting on with their life and I wasn't.  No longer could I swim, hike, take trips at will etc. etc.

Of course I was wrong.  Very few people live problem free lives and i was not an exception.

I was feeling sorry for myself also.  Why me?  What did I do?  When will it get better?

I'm now with my second transplant and not surprisingly the Docs said "That's it for you".  So I live in dread of this one failing like the last one.  Then my heart valve needed replacing because of the large amount of calcium I had to take while on dialysis.  If it wasn't for that organ failure I'd be climbing small mountains like my Dad did at my age.  Just as I was recovering I tripped and permanently injured my upper arm bone.

So I go and visit my high school buddies grave who died in the early 70's.

As I said earlier:  Try the antidepressant drugs.  There is no purpose in moping around when you've done everything you can do about it.  It's not going to go away.  Better?  Maybe.  With a transplant it may get worse.  Complications followed by failure and right back on dialysis.

There is no magic bullet, no wonderful drug and no cure.  We are extremely lucky was got kidney failure.  The taxpayers of our nation have decided to subsidize our lives.  Keeping us alive when many of us add absolutely nothing to the economy.  Do they do that for heart patients?  Lung?  Stomach?  List em all.  The answer is no.

Read up on the history of dialysis if you want to know the reasons why.  If you had to have a organ fail be durn glad it was the kidneys.

So go get the help available and pull yourself up.  Live the life you've been dealt and make the best of it.  Stop expecting problems to go away.  They're not going to.  You've got to deal with them.

I assure you that if you will start appreciating the life you have instead of mourning the life thats gone you'll be happier.  There's a lot of living yet to be done.

[G-Ma]

Thanks Orange Co, I needed a talking to today/this week..found out today my new 3 weeks in use Fistula is narrowing, clotting, surgeon wants to do a Fistula gram next week Friday and I'm bummed.  I guess this could be why I have had so much trouble sticking myself this week too...oh well and this life moves on I guess.   

[TynyWonder]

Orange Ca & Devon,

What you both said was beautiful!!!!!  Like G-ma, I guess sometimes I need a good "talking too" and its friends like yall on IHD that can be the only ones that CAN say it because you all know what it feels like.  Unlike, someone else who has not been through what we have been through.  Thanks to both you, you both are beautiful!

~Tammy~

[Mimi]

Devon and Tammy. I hear where you are coming from and I identify with it.  One of the
things I do when I have the blues is count my blessings.  I can no longer drive, but I can walk,
I feel tired alot, but I can rest when I need to,  I have a comfortable bed to sleep on, some have to sleep on the street, I have plenty of good food to eat, some have to dig through the garbage cans for a few bites, I can take a hot shower when I want to, some have to go so long
without a bath that they can smell themselves, I have enough money to pay the bills and have a
little extra, many don't have a red dime to their name, I live in a free country and come and go as I please, some women cannot leave their homes without covering their face and having a man to escort them.  I have 2 wonderful  kids, and 4 unbelievable grandchildren.  I know I am loved and I love in return and I could go on and on but by the time I get this far I absolutely know I
have nothing to make me blue.  I believe in God and I know He will take care of me and all
the other things I need and want in this life.  So try counting your blessings and see if you don't feel better. You both are in my thoughts and prayers.

Love, Mimi

[RichardMEL]

Devon, I sense in you a keen intelect and you do write very well as others have said. You seem to have a keen awareness of your own situation and the ability to put that into thoughts and words. I think that is half the battle - to understand how and why you are feeling things.

It's funny I don't feel anger so much about my situation. It is what it is. I do however think it is good to get things off your chest and not bottle it in. Share it. Yell it at us (well ok type it loud ). Sometimes that is the best thing you can do - just to share how anxsious or angry or unhappy or hopeless you feel or whatever.

Hopefully we can all get through it.

[boxman55]

Your posts orange county and Devon should be read by all newbe's to dialysis...Boxman

[TynyWonder]

   Mimi!   I think what you just wrote is what I sometimes do and that is called a gratitude list and believe it or not even tho I am sometimes angry, I do express my gratitude to God and others of how very blessed and grateful I am.      again for the reminder tho.   

[flip]

I'm sitting in the dialysis center watching college football, surfing the net, and eating a snack. Life could be much worse.