I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: devon on September 10, 2008, 09:18:49 AM
-
I know you all have dealt with this at some point so I'm looking for some input here...
Yesterday it hit me like a ton of bricks. I am spending three days of week, more time than a hobby, sitting on my ass for 4 hours while a machine does the work of a failed major organ. I'm not feeling "better". I'm just surviving. It seems so very senseless. If it wasn't for my kid needing me, I wouldn't do this and I would gladly accept my fate without the mechanical intervention.
Hell, I can't even form a good question about this because it's all so overwhelming. I'm not even sure what the questions are or might be! I feel like I'm swimming upsteam, not making any progress and getting more tired the more I swim!
I keep looking for the "silver lining" in my dark cloud but it seems to elude my best efforts.
So, perhaps y'all have some insight into this that I'm not seeing. What's the "secret" to your success? How do you deal with this? What's your silver lining? Where do you go in your thoughts to find the inspiration to keep swimming?
If I could cry I would.
-Devon
-
Oh devon :grouphug;. Everyone on this site has been where you are and with what you are feeling. I am the caregiver and it was so hard for me to watch Len go through everything he did for almost 8 years. I cried many times when he said he had enough of it. I told him how much I love him and need him everyday, I'm sure that's how your family feels. I took Len to talk to a professional counselor and it did seem to help. Many people that go through critical health issues need to be able to express their concerns to someone. Keep your family in mind when you start feeling down and I'll pray that you find the "silver lining" that your looking for. We are all here for you when you need to get stuff off your chest. :cuddle;
-
Remember, Devon, you're still a newbie to dialysis. It takes a little while to adjust. My first month not very pleasant either. Now it's almost like a social event three times a week. I know everyone and I take plenty of things to keep me busy. I feel good when I go in and just as good when I leave. You have to accept it as a part of your life and make the best of it. We're all here for you and we will help you tweak the process. It's really not that hard.
-
Ill tell you, if it wasn't for my daughter id do the same. I feel as though I am holding my wife back from a normal relationship, with a healthy guy, she deserves that. Right now, beside the fact I want to see my daughter succeed, is the hope for a transplant. That way at least I have a chance to be "normal"again, and be able to do some of the things I did before my kidneys failed. Once they get you figured out, you will start feeling better, it takes time. It took me about 3-4 months before I started to feel any different, even now, after over 2 1/2 years of dialysis, I have good days and bad, thank God the better are more than bad, but there are times still when I wonder if its really worth it. Those on home hemo seem to do lots better, I did try PD but it did not work for me, another let down. Home hemo is not available at my center, and to change doctors now, and go to a doctor that does believe in home hemo, its just too many hoops to jump through. As I said, my hope is for a transplant & a chance to live "normal" again. You are not alone with those feelings Devon, this life style is overwhelming at times, but someday it will get better, for both of us. Keep on keeping on, it will be worth it one of these days, give it time :thumbup;
-
Well, I don't have kids or a spouse to keep me going. What keeps me going is knowing I can quit anytime I want to. The fact that I'm in control (most of the time) helps me go on one more day.
The life I had with my transplant was so much better than this. The thought of that and now my social life is the dialysis clinic makes me sick. I refuse to make dialysis my life. This is not what I wanted out of life but I do it for now.
This site is the best place to go vent because you family and friends don't want to hear it.
The realization that you are on dialysis 3 times a week for 4 hours for the rest of your days is like a ton of bricks!! You learn to deal with it.
Now I feel that I spend about the same time someone normal spends in the bathroom peeing. I just get'er done at one shot.
-
Devon...I am so sorry you are having a down period..this too shall change..I don't know about getting better but how you look at it will change. I am using NxStage and feel so much better healthwise and emotionally..I feel more in control of my situation even though there are still days I would rather run away, however if I run away I would have to take my 75 pound buddy with me, and some bags. But knowing it is an option helps me. There are days I do cry at the drop of a hat, part of that is just me, part of that is this stupid disease. Please keep on coming here and ranting/raving as this also helps. Yes, I used to sew at least 4 hours a day so I had to shift my priorities/hobbies but seeing my kids and grandkids happy about my health makes it all worthwhile. I'm sending a hug your way.
Ann :grouphug;
-
Life is good as your signature says.
Sounds like you're in a depressed period, and who hasn't been in this business. Taking a pill for that is nothng to be ashamed of. But first:
Take a look at others around at dialysis and realize that there are others much worse off.
I took the attitude that it was a job, more than a hobby, a job. I may not like my job. I may even get sick on or because of the job. But none-the-less there it was and I had to do it. By doing it I claimed at least 4 days a week I could do with what I wanted.
If I took a trip I went for twice as long as others woujld so I coujld have the same number of days free. A one week trip became two weeks.
You are perceiving your life as half wasted when in fact its just the opposite. Half your life is being saved. Go use it.
-
Devon, I think depression is one of the biggest things to cope with in ESRD. Is is not possible to put on a happy face all the time. I know others have things worse than I do. I saw my SIL die last year. I am still alive. But, I think we have the right to mourn the loss of a major organ failing. I go through waves. Some weeks/months I am so optimistic and can conquere the world. I know things are going to get worse before they get better. If I think too far ahead, I get down. So, come here and talk to us. We don't have all the answers, but we will listen. I think it is normal to be overwhelmed by organ failure. No one knows until they are faced with it. But, you can do this. Just live today, then get up again tomorrow. We are here anytime you need a place to scream. You are among friends who understand. :grouphug;
-
I don't know if this will help, but if you have the option, I found my life got a whole lot better when I switched from hemo to PD. Not only did I seem to have more strength, but I travel constantly (going on a cruise to Hawaii in November and to Mexico next spring). Other than needing one wall somewhere in your apartment or house for your dialysate, it's a real boon. Check if out if you can. Although it's still dialysis, it's a much more free form of dialysis. In the meantime, I'm sending lots of warm fuzzies your way.
-
I changed my signature. Perhaps it's more accurate now.
I have always been an optmist and this is the first itme in my life that I can't seem to grasp onto that feeling and pull myself out.
I guess I am grieving. I look forward to being on the other side of that mood, moving to Acceptance.
Thanks all for the encouragement. Yes, I will persevere. One day at a time. This too shall ass. And all that.
-Devon
-
:cuddle; devon - hang in there
-
It's hard, really emotionally hard, when we get into these very understandable troughs. And if you're generally an optimistic person, as you say you are and as I am too, I think it's even harder but the truth is we all struggle ongoingly and some periods are OK, some are good and some just simply suck.
Devon I think that you may need to really give yourself permission to grieve this huge loss in your life, to moan and rant and complain about all the big and tiny things that are now changed. Once you are better dialyzed and your body (and mind) get more used to the whole thing you may start to feel optimistic again, at least some of the time. I found dialysis very tough at the beginning but did adapt once I knew better what to expect and also when it helped me feel better.
Come here any time you need to get things off your chest and you know that we'll always have big hugs for you. :big hug:
-
I felt the same exact way
now I am more upset b/c I could not manage to keep my teaching job and go to dialysis
I felt the same way until I thought about this
my sister-in-law fell down and broke her neck
she is 24/7 in bed and can barely move at all
I am on the machine 12 hours and then some b/c of the holding time
not much out of my life when you compare it to my sister-in-law
I can drive, swim, go to football games and do some normal things
so
I know this is a hard life
my step-mother said," it is a hell of a way to have to live"
the key word is live
if you get to down in the dumps talk to Flip
he has an encouraging outlook on life and D
it will become more familiar and you get used to it
you don't like it but you get used to it
Twirl
-
Devon,
I'm so sorry to hear that you are feeling this way. Youare not alone. We all have periods when everything seems hopeless or pointless. It will pass. It may take some time, and it may get worse before it gets better, but remember there are people here who will always reply to your messages, however down youare. I have posted on here when I've felt aggrieved or depressed or angry and there is always someone here with a soothing word, or encouragement, or information, or just the acceptance that we all feel utterly desolate at times.
Just writing your feelings down can make you feel better, I've said before that I don't care if no-one reads a particular posting of mine I just needed to write it down!
Keep posting, especially when you feel depressed, and there'll always be a comrade somewhere around the globe who'll empathise.
xx
carla
xx
-
it's a lot to handle, we've all been there.
-
Devon,
I can't say I know what your feeling but you had read many post when my son was alive (Dustin). There were days( many of them) where he wanted to give up, call it quits. I, as the persistent mom I was kept telling him to take one day at a time and reminded him of how much I loved him. I wish you lived closer I would come visit you. I wish I could take kidney disease from all of you. All of you helped me so much through Dustin's illness. All of you are so important not just to family but also to friends here online. When you have a bad day Devon please remember it was your replies to my posts along with a lot of others on here that helped me keep my sanity!
I will pray your days become better and you find that silver lining .
Lori/Indiana :flower;
-
There are days when it all gets to me. Then there are days when the miracle of being alive gets to me, too. Some days you just have to put your head down and pray you will get through it all.
Support and prayers are headed your way. :grouphug;
-
I'm not going to blow smoke up your ass Devon. I've dealt with crap for 2 yrs and it's as bad as day 1. I have relatives and friends "praying" for me, etc., but my faith is non-existent at this point. Let them do what makes them feel better.... What's got me through the shifting cycles of suicidal and homicidal thoughts is defiance to give in to my condition. I tend to be an ass**** most times and that's kept me going. I defy the conditions (i.e. "God") presented to me and challenge them to do me in. Having a degree in Biology helps me accept that this is all the process of Natural Selection, and I've been "selected" for extinction. If we had this disease 50 yrs ago, we'd all be dead by now. But in contrast, the advances of science of medicine are keeping us alive right now, so I'm going to take full advantage in this aspect of human knowledge. If I have faith in anything, it's in the further advancements of medicine, stem-cell research and cloning. Perhaps within our lifetimes diseases like the ones we're experiencing can be cured by growing our own genetically replaceable organs. Most likely it won't happen, but by studying and working with patients like us, doctors may achieve these results within the lifetimes of your children. All I can say is take it day by day and minute by minute, and stick around for the important things in your life, even if they're few. But these are just the opinions of one ass****.
-
Having to rely on a machine to keep you alive is about as depressing as it gets. Especially if you were an independent person in the first place.
Everybody that ends up on Dialysis feels this way at one point or another. It comes and goes. I won't lie, it took me two years to really accept my condition. I kept thinking I was going to get better. Once I realized that this was the life I was destined to live...that these were the parameters I must follow, giving up 3 nights a week until transplant, fluid and food restrictions, etc...Once I finally admitted to myself this is the way things are, and this is the way they are going to stay for the foreseeable future...I actually felt better.
It still comes and goes...but far less often than it used to.
I know this sounds kind of terrible...but all I have to do is look around the room on MWF to gain some perspective. No diabetes, still working full time, no real health problems other than the ESRD. There are people that are at the very end of there lives there, diabetes patients missing toes, feet, entire limbs. People my age (30) too sick to work. Either from the ESRD or other health problems. People so overweight that they can't get up out of the recliner on their own.
I consider myself relatively lucky.
Then there is the hope of transplant. Get on the list. Or maybe there will be better options in the near future. Some sort of research that leads to steroid-free transplant, or perhaps one day we'll have the ability to grow organs in labs using stem cells or our own DNA. Or even dialysis that takes less time. Or a small transplantable artificial kidney. Last month I was told that the problems I have with anti-bodies, the problems that have kept me from being transplantable the past 4 1/2 years, have been treated successfully in 16 of 20 patients that underwent a experimental procedure. I might be able to undergo that same procedure this spring.
You grab onto hope wherever you can find it. Then hold on.
Then there are other things. I feel like I contribute to my community as a teacher. I think about all the traveling I'll do post-transplant. Man I miss that. I think about the first 6 pack I'll down again on a summer night...not worrying about fluid limits or phosporus.
I think about how much more I'll appreciate life post-transplant. How I won't take it for granted. And how in a way, I already appreciate it more now than I ever did.
More than anything, I think about how if I can make it through this. I can make it through anything.
-
Wow ...Devon I'm so sorry your have a dark time. I'm not even on dialysis yet (though not far behind you) and I have dark times also. Between God, my family, friends, and Zoloft, I hold together. Hang on ... even if by the proverbial end of the rope. I'm a big believer that all of these hard experiences in life make us stronger and better than we were. At least in me they have - and there have been many trials in my life and in those I see. This just happens to be mine for now. I am a believer in God and I firmly believe he is aware of us and knows us one by one. I also believe when we weep, he weeps with us. I'll remember you in my prayers.
-
Thanks again y'all. You really came through for me. I really appreciate it.
I am "better" today. Last night's session was pretty uneventful and the doc came by so I had a chance to talk to him. The result is that I get to spend an additional fifteen minute in dialysis! I really have to laugh. But, the good news is that my fistula is getting stronger and they can increase the flow rate a bit which, gradually, will increase the effectiveness of the dialysis and, hopefully, I will feel some benefit. That might contribute to a better mood on my part.
Permission to grieve and feel sorry for myself. That is really important. That's a revelation I came to last night and a comment here from monrein supports that. I've not been very good at acceptance. I usually get angry and fight back like a banshee. It embarrasses my son but I usually get results. I don't accept things as they are if they don't suit me. In this case, acceptance seems to be the only option available.
But, on the other hand, I don't want to join the "living dead" that I see in the clinic chairs around me. No offense intended, of course, but if that is acceptance, I don't like it. There's no conversation, no animation, no life. It's like they go into suspended animation, comatose, for hours a day while their life is sucked into a machine, devoured, and the leftovers spit back into their veins. It's as if their life is being taken away, not given back. I don't want to spend a large chunk of my life staring blindly at a TV and not acknowledging the people around me. Last night a thin, elderly woman rolled past me to the solitude of her chair and said, "you have a beautiful smile". I was on the edge of tears as I burbled out, "thanks". We never spoke another word to each other. That's unacceptable!
I looked around last night (like you Robby712) and I felt a bit fortunate. I am able to drive there (like you Twirl) and get around. I am able to work my 40 hours a week. I have no wheelchair, no missing limbs, no thin, gaunt expression. I'm very fortunate. It's all relative I guess. Sometimes I have to desperately seek out something to grasp onto into hope and optimism because it's not coming as easily as it has in the past.
One other time in my life, I had to deal with significant tragedy. I suffered for 35 years before I discovered that this event was intended to prepare me for a very blessed event that took all the pain away. Without that tragedy, I would not have been able to deal with the other. I hope there's a good side to this experience with dialysis, that it will be the basis for another blessing in my life. I sure as heck can't wait 35 years this time though! So, please, Fates, hurry things along this time.
Thanks again y'all for your patience, compassion, and understanding. I'm glad to be a part of this group but sorry we have to be associated in this way. I'm sorry for what's brought us together but pleased we have each other. Yes, I will get through this but I'm sure I can't do this alone. For the first time in my life, I can't do it myself. I need others and I need you. That's hard for me to admit. Very hard. Maybe that's the lesson I have to learn: I can't do everything for myself and I need others, that life is not what we live but a network of people helping people, needing other people.... Jeez I sound like Barbara Streisand!
Love ya,
-Devon
-
I think life in general can make you feel overwhelmed, tired, and just treading water and well to add into the mix a failing kidney can just heighten all those feelings. You are going to have your ups and downs but keep positive!!! Focus on things that want to make you live! :boxing; you can do it just stay tough!!!
-
glad you're feeling a bit better. don't wait for others to talk to you, start talking to them. i bet they respond in a positive way. my center seemed unfriendly at first, but really isn't and patients talking together is power. hang in there and remember we are always here.
-
:rofl; Barbara Streisand
-
I talk to ALL the patients at my clinic. We are all nice people from very different walks of life but what we have in common is so much more than the differences in skin colour, religion, country of origin and first language. One of my good buddies is from Sri Lanka and does upholstery piece work for a living. What a courageous and lovely man and we have much fun teasing each other. We all greet one another when we come in and when we leave and we worry about each other too. Kind of like IHD.
So happy to hear you feel a little better Barbara, er uhm I mean Devon. :cuddle;
-
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---- ;musicalnote; people, people who need people, are the luckiest people in the world ;musicalnote; Glad you have some humor too! Sending you big hugs and hope that each day gets brighter :grouphug;
-
Devon, :cuddle;
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 :flower;
-
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.
-
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.
-
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
-
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!!!! :cuddle;
-
Glad you are doing better. :flower;
-
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!
-
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.
-
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 :rant; Thanks for listening to me as well!
Tammy
-
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
-
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~
-
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.
8)
-
I think you'll find yourself taking two steps forward and one step back but you will move forward.
-
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
-
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.
-
Devon, you posts are beautifully written. :grouphug;
-
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.
-
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. :Kit n Stik;
-
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~
-
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
-
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.
-
Your posts orange county and Devon should be read by all newbe's to dialysis...Boxman
-
:thx; 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. :thx; again for the reminder tho. ;)
-
I'm sitting in the dialysis center watching college football, surfing the net, and eating a snack. Life could be much worse.
-
Flip! I am laughing out loud, for real not just LOL. The image of you sitting there, grinning away is precious. Thanks.
what I'm going through is a process that each one of us must go through. Sometimes we don't all go through it in the same way or at the same speed but we eventually get to some level of acceptance, if we're successful.
As much as it might seem very easy to those who've been and forgotten it, we can't be hurried along with a "pull yourself up by your bootstraps" expression. It's not that easy. In fact, we ARE pulling ourselves up. That's obvious or we wouldn't be were we are. But the process of pulling in sometimes long and tedious. We aren't all blessed with the wherewithall to accomplish it in a day.
I am moving forward, I feel; slowly getting better everyday at handling things. There will be good days and bad days. It doesn't get easier, we just get better at it.
-Devon
-Devon
-
Devon, you are doing great! If we don't grieve or have anger, I don't think we have really accepted the situation. Others who join later will read your posts and know what they are feeling is all a part of the journey. Thank you for sharing your deepest feelings with us. It is a privelege to read your posts. :grouphug;
-
I'm sitting in the dialysis center watching college football, surfing the net, and eating a snack. Life could be much worse.
I've been off dialysis for about 3 years now. My schedule was read, then watch the news, then sleep and end up playing a hand help video game.
With internet access now available I'd add that if I go back. Knock on wood.
-
Saturday is usually a good day for dialysis. None of the administrators are there and everyone wants to get the hell in and out. It's very seldom that I get written up on a Saturday. Most of my antics go unnoticed.
-
flip...gett written up??? what in the world could you get written up for?? serious question here....
Devon...you are very right, we just get better at it.
I had a very bad, very emotional morning this morning and I think finally verbalized it to my son when we talked...this dialysis and everything that goes along with kidney failure is a """mental game"""....In a large part we are all guinie pigs and if it works we are great and if it doesn't then life sucks. I generally am a very positive person but this has gotten to me big time and is not wanting to let go. So, for a minute I will keep on hanging on and trying to "win" this game.
Ann
-
I tend to violate most of the rules but they usually ignore it. Today I was up with machine running, adjusting the machine without permission and kissing nurses for no apparent reason.
-
well, the nurses were probably happy :clap;
-
I was there when he kissed the nurse and he was p.o.ed.
-
OC..you are brave..I was going to go there but decided to just let it lay like roadkill.... :rofl; :rofl;
-
all the nurses in my unit are young and female
-
The first two years are hard.
After that, it becomes something you mind less than mowing the lawn.
Two things to take into account there: 1. Our lawn when I was growing up was an 1 1/2 acres. 2. I always have a book I look forward to reading during treatment.
M:>
-
I bring a back scratcher to dialysis for the purpose of hitting the tech if they hurt me while cannulating my fistula. Indeed, they are very careful.
-
Damnit flip I want in your unit!!!! :) All my nurses are much older. Friendly and totally wonderful and professional... but... yeah not kissing material.
I can relate this story though which i thought was hilarious. I have one nurse and she's a sweetheart. She's from Hong Kong originally but has lived here for years. Anyway I have a new laptop and I've been changing the backgrounds on it to various images... I knew she and I would be discussing something so I specially downloaded a picture from HK for her - because she's going back in a few months to visit. So I got this picture of a HK tram in the street which i thought was pretty cool - they are very distinctive and VERY Hong Kong. Well so we had our talk and then I showed her the picture and she was translating verious signs and stuff "oh that's the bank, and that's the jewelery shop..." etc and then she paused and started laughing with this funny expression on her face... and she said "and there, that ad on the side of the tram.. that's what you need!" and I said huh??? and she whispered to me "that's an ad for viagra!" !! I nearly fell off my chair at that one kind of mortified for her, but also laughing so hard....
Incidently I don't need that particular product :p
-
Devon,
Its good to see you are doing better today! :thumbup; :cuddle;
~Tammy~
-
so RM...is she single???? you need to watch for possibilities.....
Ann
-
There are a thousand different perspectives on being a patient, coping and life's purpose. A lot of them have already been eloquently expressed, what I have to add is - you are here to have a positive impact on the world. We as patients have a unique perspective on life and we understand what is truly important (although it is hard earned). I have made a similar statement to yours - if it weren't for my child I wouldn't even try; but there are people who depend on us and we can do some good by letting those not impacted by Chronic Disease know that life is grand and they should enjoy it! Why fight, kill and steal when you could help, love and give. We have a job to do :thumbup;
With love and support :grouphug;
CW
-
so RM...is she single???? you need to watch for possibilities.....
Ann
lol no. she's married and probably 25 years older than me. She's a sweet lady though. She's only small though and it's funny last year for new year's I took in a bottle of french champagne (I was given it by my idiot father who seemed to think giving a guy on fluid restrictions a big bottle of bubbly was a good idea *sigh*) so I decided to share the love - after everyone had finished dialysis of course and the unit was officially closed. So I had the bubbly, someone else bought some chicken and a few of us sat around and had a drink and feed for the new year. Well this particular nurse had just HALF A GLASS of the bubbly and I found out a few days later that an hour or so later when her hubby was driving them somewhere she passed out (!) from the bubbly!!! Now it's been a bit of an ongoing joke in the unit. Too funny :)
She's also very amusing because she keeps telling me to go to dating sites and this sort of thing. I think she secretly wants to matchmake LOL. That's another ongoing joke too we have.
I love my nurses they are all really great :)
-
RichardMel, I think your nurse is my long lost sister!!
Devon, how are you doing this week? You are a strong person and you can do this. :cuddle;
-
Incidently I don't need that particular product :p
I do!!!!
-
I am only now reading this thread and I think it is positively tremendous. I really want to commend all of you who have given your input here. It is not just for Devon. So many go through this and need to understand that it is all part of this challenge that life has dealt us. But we will make it.
I suppose I have been through all the stages. Tonight, with all the lights turned off, my grandson and I sat on the gallery (veranda/porch) with the moon like a huge silver plate over this amazing view that I have. It was a grandma/grandson moment as I told him of my mother and father, of his mother's relationship with them. He talked about when he gets married one day (he is 5!!!!!!) and the fact that I might not be there. But we both enjoyed the fact that I am here and I intend to be here for quite a while. So those 4 hours three days a week are just my help to be with my grand son.
-
oh bajanne, what a nice time for you.
-
What a great description of your time spent with your grandson. Special times indeed.
-
Bajanne,
Yes! Those are the moments that give life sense and purpose!
Thanks for sharing that.
-devon
-
Seeing the world thru a child's eyes can make the world look so good. Thanks, Bajanne, for sharing such a sweet moment.
-
just seeing and holding newborn & patting it's little, bitty butt, gives me peace & hope........... :bandance;