I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: gothiclovemonkey on December 18, 2010, 07:12:32 PM
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???
I feel like I am so alone. I mean, I have family, but, they dont understand, and they really arent there emotionally at all, and physically... well yes I see them a few days a week, sometimes more, but I feel as though I am going through this so alone. They dont understand anything about Dialysis, and dont seem to want to know about it... I do think my dad tries, the old country boy he is, tough, cant show emotion you know the type, he will pick me up from dialysis, ask how much they took off, ill say 3 (or whatever) and thats the extent of it... My brother sometimes spouts out things about the fact I shouldnt drink the Diet Coke, or eat those nuts..
I feel like my friends have abondon me since I got sick, not that they were that great of friends anyway, the only came around when they wanted something, seemed they wanted more when I could work and afford to give the money, now that they owe me and I need it back, they have disappeared... And the ones I felt were true friends, they too dont come around, and Idk why. Its not like im contageous, and NORMALLY i dont let this stuff get me down. Im normally fairly upbeat, and I hide how i am feeling.
Why do I feel so alone??? Some days I just dont want to waste the time and money its taking to keep me going, if i didnt have the amazing little boy that I do, I would not do this anymore....
I suppose I am just being dumb... or selfish and ungreatful I am sure there are people completely alone in this world and I should be thankful I have what I do have... I just wish this alone and empty feeling would go away!
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It sucks to feel alone. I am not the patient, but my family does not understand, sometimes I don't bother to share new updates because they just don't get it. I am sorry GLM but we are here for you! Sending you lots of HUGS and LOVE - hang in there. :cuddle; :cuddle; :cuddle;
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I dont want you to feel alone :'( Its an awful feeling and I'm sorry your feeling that way.. I am glad you have your precious son, but even in that it must be hard worrying about how he does with it all. I am glad that my family doesnt REALLY have to feel what is like to go through this, but i do wish they understood that it's not easy turning down fun stuff they offer. I told them yesterday that we are going to sell our house, and move far away so i dont have to explain the whys of why we're not available as we once were. It's hard stuff and like i said, it's not that you want them to 'feel' it, but please have a heart and open ears to your feelings... I pray for some comfort tonight.. :cuddle;
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On a brighter side, I used to sit in that chair lonesome lots of times. I did spend some time making small talk at the center, but mainly for sanity sake. I pushed everyone away except the friends I made here at I.H.D. You know, I felt as though I was holding my Wife and Daughter back in their life. The main thing I learned from the chair, was, and is still today, to talk to God as I know he understands how I feel. So long as I have him, even though times get tough, I know he is sitting me still to talk to me. Take the time to pray, it really does help. OK, I'm going to step down from the podium, I hope you find your healing in trusting that things do and will get better, I'm praying for you.
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I think most chronically ill people feel alone. It can be a very isolating experience. I don't know why, but kidney disease doesn't seem to have a lot of visibility. Our local hospital sends out a monthly newsletter, and on the last page is always a list of local support groups. There are groups for cancer, alcoholism, bereavement, mental illness, cardiovascular disease, but NOTHING for renal patients which is very odd seeing as there is a dialysis clinic on the campus of the hospital!! I even called the department that handles the info for all of these support groups and asked if there were any renal support groups, and she couldn't find one. So, that alone feeling seems to be magnified in renal patients.
I have felt like you feel, and I've sat myself down and asked what I expected/wanted from my family. Did I want their sympathy, advice, what? I realized that I didn't want much, didn't expect much...just the occasional phone call from an aunt or two who will ask me how things are going. I have a cousin who was on D two years before getting a transplant, so there is some knowledge about renal disease in my extended family. But other than that, I stopped caring what other people thought or felt about my disease because they don't care...they don't have to care, and I don't care if they don't care. Once I stopped caring about whether or not they cared or understood, it lifted a great weight off my shoulders.
Is there one single person in your real life to whom you can explain what you explained here tonight? Is there a friend that you could have come around and lay it all out on the table? Sometimes all it takes is making a connection with just one person. Do you have anyone like that?
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I found this thread because I saw Moosemom's answer, and went to the thread from there, and worked my way backwards up the thread, wondering who was lonely. I thought, is it one of the cheery ones? and it was. Damn, Gothic, I don't want it to be you. But everyone gets down sometimes don't they, why wouldn't you, you have a lot to carry. If it's worth anything, people here know what you mean, and you help people here too, and I am always glad to see your posts. Get some rest, take some time out, things usually improve after sleep and rest. Here, have a flower.
:flower;
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I know how you feel. My brothers and sister has no clue of what I am going through. After mom died last November
my sis told me I can stay put in mom's house. After she talked to my greedy brother and his greedy girlfriend I was told they are going to sell the house and kick me to the street knowing I am dieing they just don't care the want the money. Just can't wrap my mind around that. But a good note received a letter from a friend of mine on FaceBook who felt for me and my condition and wants to be a pen pal and a friend I can lean on. She wants to come here with her fam and hang out with me I thought that was cool. My girlfriend has been by my side through this whole thing she loves me regardless of my condition.
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With the exception of this site and my friends on IHD, I do feel alone in this struggle. Before transplant most definitely, and after transplant somewhat. People forget and stop asking how you are. I know that if I didn't post the occasional Facebook update I wouldn't get the "So happy for you" and the "How's the kidney" statements/questions as much.
This site was an answered prayer that I never even sent up. Come here often and get your support here. Your friends and family will catch up.
:grouphug;
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Thank you all so much. I love this site, its one of the only things I really have.
I usually try to be upbeat, ive kind of always battled with mental problems, so I have my moments. I think its strange how in one hand I can feel so truly blessed and pretty wonderful, considering what we all deal with in life, but at the same time I continually feel either numb or sad, it just lurks behind it all. I dont see how I can be soo positive and sooo depressed at the same time. I really do feel blessed, and lucky! (Sometimes I wonder if i dont have some sort of multiple personality! lol)
I think the hardest part is not having the offline people in my life that call themselves friends and my family, even aknowledging that I am unwell. Family make plans on dialysis days... that really bothers me alot, maybe i shouldnt let it bother me. Or getting mad at me for having a messy home...which I dont like having a mess, but I can barely walk most days.
I dont have many friends, because I am such a recluse. Most of my "friends" only contact me when they want something. Ive never really had the type of friend I can open up to. I do have one friend who seems to really care, it is somewhat new friendship, an old co-worker, shes an amazing gal, and we go for lunch and stuff, which is lovely. And I met an amazing man, who is so much like me (unfortunately he lives 2 hrs away! I met him online lol) He helps me alot, when I am down. So that helps. And of couse all of you IHD folks! So I know I ma not completely alone. :)
Needlephobic I am sorry your brother is being selfish, hopefully he wont do that. And I am sorry to hear of ur loss, I lost my mother in 98.
I agree there should be support groups, that would probably help. I know this site has helped, knowing alot of you are going through similar experiences... Sometimes I get a bit jealous though, of those of you who dont feel like crap all the time :P I am glad you dont feel badly all the time, but still wish that I too could feel good because of dialysis.
Just the other day I was telling my brother, I dont feel well, his reply was, you are always sick (in a very snide tone) I wonder why I even bother to try to tell anyone how I feel. And when he is complaining about things, I always listen and try to be understanding, but here lately its been hard, mostly because its things I personally think he could change, I try to get him to see the silver linings, but its impossible... I feel like a B**** because I have limited compassion these days for people who continually complain about aspects of their lives they could totally change. I cant change my kidney failure, and you rarely hear me complain...
and while im on the subject, why do people ask you How you are feeling? If you tell them Oh im fine, thanks, they dont believe you, but if you say Eh ive been better, or I feel like crap, they dont want to actually hear it.... seems kind of stupid to me.
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Hey! I just looked at your profile that says you are in a "random cornfield in Illinois". I'm in Illinois, too...maybe we could meet up! If you'd like, you can PM me and tell me where you are, and maybe we could meet halfway. Illinois is a LONG state, but I've done the drive from Chicago all the way down several times, and it's pretty easy peasy. It might be fun. We could have a renally friendly girl's lunch or something. My kid is all grown up and lives abroad, so I am relatively untethered. I'm not on D yet, so I can travel fairly easily. Anyway, think about it. Your call.
You sound normal. At least, you sound like me, and I think I'm pretty normal. Yes, I do. In our instant communication society, we can at any time see the suffering all over the world, so we are very aware of the ravages of homelessness, epidemics, earthquakes, financial disaster and all sorts of horrors. So if we have enough to eat and a place to live in a society where people are not trying to kill each other just because of the color of our skin or our religion, we feel lucky (or SHOULD) and blessed. But when we look at the nitty gritty of our lives, no one who is blessed and lucky feels that way if they have something as "devastating" (I put that in quotes because in medical literature, that adjective is often used) or "horrible" (quoting my neph) as CKD/ESRD. So feeling both blessed and cursed is normal in my world.
Your family has not shown either understanding or compassion, so it's time to drop them in this regard. Sometimes you have to not only build support networks but also build defenses, and I suspect you will need to build one to protect your soul from your family. It's not true that blood is thicker than water. I have a half-brother who wants a large portion of what my mother left me when she died because he reasons that it was our dad who made that money, so he's entitled to it. He is getting ready to retire, has a wife and home and has a son who is 30 and is gainfully employed. I probably won't live to retirement, and MY son is disabled for life, yet my half-brother wants hundreds of thousands of dollars from my mother's estate so that he can buy his wife a new house. I do not waste my time feeling hurt. He's never mentioned donating a kidney or ANYthing re my health; I could be hurt if I wanted to be, but I can't be bothered.
When people ask me how I'm doing, usually followed by comments on how well I look (code for "you're not THAT sick"), I tell them that I just bought a new makeup and it must be working wonders, and I straightforwardly tell them exactly how I am feeling and that I am still awaiting a transplant and isn't it amazing what doctors can do these days and it is amazing that they can remove donor kidneys laproscopically and it is amazing what a transplant can do to transform a life and it must be an amazing feeling to be able to literally save someone's life and it's just all so incredibly amazing, and how are YOU doing? :rofl;
I know this sounds harsh, but I have found this to be very helpful...remind yourself that your family's reactions (or lack thereof) is really more of a reflection upon them and not you. Here we are at IHD...people behind computer screens, people who have never met you, yet we can show more interest and compassion than your own family. What does that tell you about your family? For them to schedule things on your dialysis days is unforgiveable. That says way more about them than it does about you. I'm really sorry they are that way. Of course it bothers you; it's very hurtful. But screw 'em. Sometimes it just comes down to that simple philosophy.
Are you getting optimal dialysis? I don't know what modality you've chosen...do you do daily D or is it the thrice weekly incenter mode? Do you think that part of the problem is that your health isn't as good as it could be? Is your dialysis "optimal" or just "adequate".
One last thing...while perhaps it is a good thing to "always look on the bright side of life", don't beat yourself up if you have bad days or if you are not the shiniest person in the world. You have a lot on your plate, and you just can't add the burden of behavioural expectation. It is impossible to be happy and upbeat all the damn time, and to expect yourself to do that is just setting yourself up for failure. You don't need that.
Have I fixed you yet? :rofl; I apologize...I do go on, I know. I just hate to see anyone suffer emotionally when they already have so much more to deal with. I hope you will feel better soon out in your random Illinois cornfield. If I can help you in any way, I am more than happy to drive to meet up with you. Or, you can come see me if you need a change of scenery! We've got spare bedrooms and you can come camp out here for a weekend! Bring your son! We'll show you a good time. You don't have to be upbeat around me. I get it. :cuddle;
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you are toooooo amazing Moosemom... :2thumbsup;
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I agree she is amazing!
Normal? me? LOL no... im far from it...
Id love to meet up with you!
Family sucks, people suck, i know this lol my family has always been kind of down on me... so im used to it, but it still hurts..
My dr is less than desirable, so i have no clue if im getting good dialysis, but i think i feel worse than i did before i began.
Alot of people say you dont look sick, u look like u feel well today.. I am thinking, well, yes, compared to usual at least i dont feel like death has his hand in me. but i never really feel that great.
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Hi gothiclovemonkey, oh I sooo feel for you. Great reply from Moosemom. I hope you do meet up.
I thought I would share this with you and hope it might give you some comfort. I really believe the saying is true.
After you have finished reading it, you will know the reason it was sent to you.
Here goes:
People come into your life for a REASON, a SEASON or a LIFETIME.
When you know which one it is, you will know what to do for that person..
When someone is in your life for a REASON, it is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, To aid you physically, emotionally or spiritually. They may seem like a godsend and they are. They are there for the reason you need them to be. Then, without any wrongdoing on your part or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away. Sometimes they act up and force you to take a stand. What we must realize is that our need has been met, our desire fulfilled, their work is done. The prayer you sent up has been answered and now it is time to move on.
Some people come into your life for a SEASON, because your turn has come to share, grow or learn. They bring you an experience of peace or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it, it is real. But only for a season.
LIFETIME relationships teach you lifetime lessons, things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person and put what you have learned to use in all other relationships and areas of your life. It is said that love is blind but friendship is clairvoyant. Thank you for being a part of my life, whether you were a reason, a season or a lifetime.
I really hope this gives some small degree of comfort.
Good luck and cherish your true friends!
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GLM-
I've also gotten left in the dust by my "friends". It's sad and very heartbreaking that these people that I've shared so much with have left me lonely. I only have family and my lifetime best friend from teen age years and thats only by computer. I can't get the phyisical affirmation I crave from that. I thank God for this site and for the way I'm able to see that I really not alone, and there are others that feel the same way I do. I just keep "tunning "in and get my "hugs" from here.
Sending them to you and all for the support and T.L.C.
:cuddle; :thx;
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Dear GLM. You are NEVER alone! You have us all the time... and with us spread out all over the world we cover all timezones pretty much 24/7. You feel down and want to vent.. come here... !!!! You feel like the world owes you something more.. come here (I have hugs to spare!). You feel like nobody understands the *)#*@)@#* you struggle through day to day... come here... many of us have experiences that can mirror yours in part. At the very least those of us who have done dialysis get it.
I've been there.. the whole "you look so healthy" (and yet, after transplant it's still YOU LOOK SO HEALTHY! - I must have really looked like shit before!! :rofl;). Family who try to understand but just don't get it (I had my brother come in after the transplant and acost a doc with stupid questions and assumptions and she shot him down in flames.. I had to laugh). Or even my father, who is a dentist by training and because he did anatomy 101 like 40 years ago thinks he understands the whole thing. nuh huh.
As for friends... I guess I have been blessed in that since my transplant they have really come out of the woodwork - the ones who MATTER. The ones who DO care. Not the ones who want something or just want to use you. I have been amazed by the numbers of people making real efforts on my behalf, visiting, constantly sending texts to see how I am etc. But when I think back it was also before my wonderful gift that even little things would happen - a co-worker would enquire, in a polite way, and not at all forced or fake, or someone else would ask how that horrible dialysis was going. It IS very hard for "outsiders" to understand because luckily they don't have to deal with all that - and I for one am happy that they are so lucky!!! Even explaining fluid restrictions seems to go in one ear and out the other ("So OK you can't have a beer but you can have lots of water right?" ummmmmmm..... :rofl;)
Just remember the people who ARE there are the ones that matter in your life. The hangers on and the ones who borrow stuff. They're not friends.
We're friends. We're the "insiders" and we're always here!
:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Its over 5 years since i had a hug ... :'(
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Thank you all for your kind words :)
:cuddle; Kickstart! and :grouphug; :grouphug; :grouphug; for everyone!
I am very thankful for IHD, you people are amazing and wonderful, and im happy to have you in my life. I know I am not completely alone, because I have you.
thats a lovely story, and I agree, Ive always thought that myself. I feel that people do come into our lives for a reason, a season and a lifetime.
RM "So OK you can't have a beer but you can have lots of water right?" I get this one ALL time time!! its insane how little people know about kidney failure!!!
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GLM, I'm sorry you feel so alone. Andy is the only person I have; my family doesn't even know I've started dialysis and I don't know if I'll make any point of telling them. The friends we had before were 'one-way' friends already anyway, so we didn't actually lose any, but it still sucks.
:cuddle; to you.
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It's not just you. All of my friends disappeared in the months and years after I was diagnosed espically after I contracted an infection after my last fistula was placed. All the sudden I felt like I had the plague, no one but my family wanted to be around me. There are a few people I talk to online but the only people I have any real contact with are the family I live with. I asked my cousin if he would be tested and he has not spoken to me since. Even my own brother refuses to be tested.
I'm on home hemo now, but even when I was in-center no one talked to each other. It seems like everyone is so engrosd in their own world that nobody has time for each other. I was relieved to find this group because it gives me a place to talk to people who understand what I'm going through.
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Its over 5 years since i had a hug ... :'(
:grouphug;
Need to be able to make these icons BIGGER.
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Thanks Goth they are selfish and greedy. They don't care how I feel from day to day and it sucks. All them times in the hospital no visits excet for sister. Hey KickStart if I was there I would give you a big ol hug everybody needs a hug
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Nobody has hugged me for at least two years...how sad :'( You would think I was contagious or something. Maybe they are afraid they'd break me??? I feel deprived. Even the monkeys' in the psych. studies had a wire monkey with padding to hug! All I have is a stuffed teddy bear named Flossy Nurse ( my Florence Nightengale Teddy Bear) to give me my hugs other than that, it's this site!
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We should have a meet up, and having "hugging hour" for those who would like a huggie....
hehehe just go around hugging random people hehe :grouphug; :grouphug;
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Awww ...
I love huggles and am therefore sending humongous
*HUGGLES*
to everybody who needs one (but mostly monkeyGoth, Kickie and Casper).
;D
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Hey Kickstart, Move over a little Closer, I've got something for You. :cuddle;
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mizar i find i have little patience with healthy people and their "problems". everyday i ask not to be that way but for the most part people know i am not the one to complain to if u have a cold...just to deep in my battle right now. i had a friend the other day go on and on about how depressed she was over losing a 3 month loser boyfriend....i had to hang up on her.
hang in there!
xo,
R
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Hugging hour?! Wait I'm booking my flight.....
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:grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :grouphug; :grouphug; :grouphug; :grouphug;
xoxoxox
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Lots of hugs for the people who are on their own. :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; I said hugs not gropes.
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Yes, I'm pretty much alone.
I live alone. No one lives in my home but me and the dust mites.
I was an only child, no brothers or sisters.
My mom passed away in 1993.
My dad and aunt don't live near me. I had moved to MA to pursue my career. I was always a loner chap, following my nose. I had a number of friends, but one by one they either moved away--or pursued other personal interests--or, in a few cases, passed away.
For those who give us lonely folks hugs, you have my appreciation and my thanks.
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Golly, I don't want to spoil the sad party, but I'm happy with a wonderfully supportive family. I reckon life is great.
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Hey GLF,
I just read through a lot of the responses to your post and I got a little choked up. I am currently having the same feelings and its just soooo not like me. My family has been very supportive, but as supportive as they try to be they still dont really understand. I dont think anyone who hasnt been through this can really understand. Im single and I really envy people who have a significant other to lean on and help them through this. Ive lost my confidence and I feel like Im never going to meet someone who wants to be in a relationship with a sick person. My friends were great at first, even giving me rides to dialysis when i wasnt feeling good, checking on me everyday, really being there. And now most of them have dwindled away. The ones that care all live super far away, so I miss out on the physicality. I feel like Ive lost everything, especially my independence. But I hang in there and I hang in there, like we all do. I am new to this site and just so thankful for it! Its the first time since I started dialysis that I feel like people are really listening to me. Stay strong Gothic!! Youve got friends here!!!
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We should have a meet up, and having "hugging hour" for those who would like a huggie....
hehehe just go around hugging random people hehe :grouphug; :grouphug;
GROUP HUGSS... that could be intresting ;D :grouphug;
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:cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :cuddle; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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vivalaslele-- i too am single, and feel that no one would want a sick girl, also since ive lost a ton of weight, my body disgusts me, so now i have added more too that lol ill be single forevers! lol
A good point :
I was tlaking to my bro, and mentioned feeling lonely, he says, HOW? i said well because no one is going thru this but me. AND HE GOT MAD!!!!!! He said I take u to dialysis, i see you almost daily, how can u say i dont go thru what u go thru..........................
LOL How do I even respond to that/?? So I simply said, yes, my dear brothe u go thru alot with me, i appriciate that, you are right. (When inside i felt like saying screw you, you have NO clue... your the one who constantly tells me u would love to switch lives with me, and that u would drink all u want, and suffer the cramps and stuff...ya.....)
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My first Christmas without my family, just me and my son...
it is kind of weird but also kindof nice too i have a lower stress level than normal! lol I am usually such a basket case, but it feels like any other day only will lights and presents!
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Sending cyber hugs to all of you. :grouphug; :grouphug; :grouphug; :grouphug; :grouphug; :grouphug;
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Its Christmas day and I am am alone and fighting to keep upbeat. I am trying to the bad thoughts out of mind by keeping myself busy making a Christmas dinner and doing my using chores outside. Several of my sisters have called and talked briefly about whats going on today. After the phone calls I sometimes feel a little down on what I am missing. The sounds of presents opening, the oohs and ahhhs of what they got and the nieces and nephews playing with their toys(sometimes I'm there playing with them :laugh:). I'll make it through today and be OK and feel blessed for another year of living.
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ive neve been alone on xmas before....
the bad thoughts im ahving arent making it easier, and not feeling well to boot. its been odd.
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Im sending much love to those of you spending this holiday "han solo" (hahaha star wars, get it!!?? :rofl;). Just remeber that the rest of us are thinking about you and wishing you well. XOXOXOXOXO
ps GLM- maybe we should start a kidney patient dating site, like match.com except for people with kidney probs!! lol we might be millionaires!!!
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***
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We tried a kidney dating site, but there was not enough participation at the time.
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Gothic, sometimes the best thing to happen to you. When my dad moved out last year, the atmosphere in the house changed. We think my dad is bipolar (his sister is, and I'm told that his mother was, so, odds are good) and we always had to walk on eggshells around him. The smallest thing could set him off, and I'm very non confrontational, so I'd run and hide. I don't have to do that anymore. Also, when he does start, I feel empowered to know that I can now tell him that if he's going to act like that, he can go home. *LOL*
I'm lucky to have my mom. Even though she doesn't understand everything, she does try. I know that when I start getting into transonic results and stuff like that, she kinda glazes over, but at least she's pretending that she's listening. *L* I know she understand some, but she understands PD much better than she does HD. She was who looked after me when I was on dialysis as a child. She did all the work with the machines, hooking and unhooking me, giving medications, taking samples. I wasn't allowed to do any of it. The HD, however, is a whole new world to her, and she doesn't like being at the unit when I'm on. When we're in NY, she goes for a walk. She went for a walk when we were in Ottawa this summer, and neither of us had been there before. I get it, and I don't hold it against her. Everyone has a breaking point, and I think hers was the realization that for her daughter to live, she'd need to be stuck with huge ass needles 3 times a week for an unknown period of time. I know she loves me, and she's the only one in my family who's willing to be tested to give me a kidney, even though she knows she's a incompatible blood type. She's going to make an appointment in the new year with the neph to see what we need to do to get on the paired donor exchange registry.
As awesome as I think my mom is, she's not a really touchy feely kind of person, and I am. It's something I don't mind getting from my dad. *L* I get most of my hugs concentrated in a 5 day period, when I visit my friend Kelly in New Jersey. Like me, she's rather touchy feely, and doesn't get nearly as many hugs as she should. Sometimes I think that it sucks that the person I talk to the most is about 1000 miles and across the border to my south. I'm glad I have her, though. We came into each other's lives when we needed each other. I can only wish that everyone could have a friend like her.
I know I"m lucky to have the few people that I do, and if they'd go for it, I'd gladly share
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Check out: http://prescription4love.com/
ps GLM- maybe we should start a kidney patient dating site, like match.com except for people with kidney probs!! lol we might be millionaires!!!
OMFG!!! Im checking this out right now!!
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Some years ago it was tried - renalromance it was called. Kind of was a bit of a flop, sadly.
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Yeah i remember that , to be honest i think the problem was kidney patients dont want to date kidney patients ! Although we have a 'bang tidy' chappie just started dialysis with us a few weeks ago ... :rofl; :guitar:
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I agree. I must be honest as well. As a kidney patient, I do not want to date another kidney patient. Why, I don't want someone to remind me of myself. It's bad enough that I'm on dialysis. Both of us don't need to be. Just the way I feel. ??? :(
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Question: Would you date a transplant patient? They still have kidney disease, even if they aren't on dialysis at the moment.
I'm in two minds on the subject of dating a kidney person. On the one hand you know all the struggles they will have to go through and the various things that can happen (both good and bad) and vice-versa. That's a positive in my book because at least you'd both get some understanding when the disease gets in the way(eg: tiredness). However by the same token it is negative when you have to deal with your own stuff and then there's another person also trying to deal - that COULD get overwhealming at times - specially if both partners were going through rough patches at the time.
I am reminded of a recent new member who met her partner right after they BOTH got kidney transplants and now are both on dialysis. I believe they're now married. Clearly it can work for some - and I think that's wonderful.
I think if the right person came along for me that would be more important than worrying about the kidney disease aspect.. I mean I *know* that CKD is not the end of the world...... and you CAN have a life with it.
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Richard I think its awesome that you are so positive. I agree with you about dating someone with cdk. On one hand you know your partner will totally understand what youre going through, but at the same time it might get dificult if you are both going through a rough time at the same time. I guess im feeling a little hopeless about dating in general or ever meeting someone that will be able to handle my medical issues. At this point i guess it doesnt matter because im not even feeling good enough about myself to really let another person into my world. Anyway, I appreciate your positivity!! Its awesome and gives me some hope!!
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I think a dating site for kidney dialysis patients would be great! I'm always feeling like I'm alone and who would want to date some one like me? I would! I'm a great person who is going through a period of time that is especially hard. I would like to talk/date some one that can relate and sympathise but also some one that can say "SNAP OUT OF IT!". There is always hope and the future can hold unknown possibilities!!! I have my quirks and challenge anyone that claim they do not.
All we want out of this world is love and peace (within and out), and we should be able to find it. If not by dating, but by at least making good friends and confidants.
Could we try it again?????
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Richard I think its awesome that you are so positive. I agree with you about dating someone with cdk. On one hand you know your partner will totally understand what youre going through, but at the same time it might get dificult if you are both going through a rough time at the same time. I guess im feeling a little hopeless about dating in general or ever meeting someone that will be able to handle my medical issues. At this point i guess it doesnt matter because im not even feeling good enough about myself to really let another person into my world. Anyway, I appreciate your positivity!! Its awesome and gives me some hope!!
*blush* thank you! Flattery will get you everywhere... wait, are you chatting me up?!! :rofl; :yahoo;
I TOTALLY relate to your comment about being worried about meeting someone that could handle the medical issues as well as not being able to feel good enough about yourself to let another person in. I've experienced both of those.. and also the feeling that it would be unfair to even go looking for someone and drag them into that whole world of worrying and stuff... and then on top not being a very good "date" due to complications of dialysis/CKD (like being too tired to go out or whatever or restrictions getting in the way, or even problems of a more intimate nature)... In this respect a fellow kidney patient hopefully WOULD understand those issues.
However I also learned a few things over my time both pre- and on dialysis - some women said to me that they wanted to take the chance to get to know me and be involved.. that I shouldn't make that decision to "protect" them from me - that it should be up to them to decide if they want to go there or not - which makes some kind of sense - but then how much more hurt is there if they turn around and say "well actually no this is just too much for me"??? A few others said they didn't care.. it was me they wanted to date and not my disease (wait this makes it sound like I've been with a heap of women.. :rofl;).
I think you've really hit a key issue on the head - if you're so wrapped up in your own struggles and not liking who *you* are because of the issues from dialysis - ranging from the physical like fistulas and being tired all the time and not feeling very attractive to emotional then yeah, dating's not going to be a great idea.
A dear friend to me said to me just the other night that one of the things she really likes about me is that I have a generally positive attitude and a quiet confidence (?) in my voice and manner and that that, to some, is very endearing. I'm not saying everyone can find someone if they just get positive... but I can definitely see what she's saying that potential partners will see those kinds of things as appealing rather than someone who's so wrapped up in their own stuff.
Just a few thoughts for what little it's worth.
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Great post. Thank you. :2thumbsup;
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Beautiful post. You brought tears to my eyes. How lucky you were to know such love and admiration and have that insight.
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:grouphug;
Great Post Noah. Thank you for being so open and sharing. I've finally come to the resolution that Love is Love. It comes in all shapes and forms, and we have to get it and cherish it where and when we can. I did my dialysis/transplant journey all alone by choice, probably because I was scared to have to trust and rely on someone when I was at my neediest. I am still quite proud that when I was discharged from the hospital after my transplant, I walked out of the hospital carrying my bags, walked a couple of blocks to Broadway and hailed a cab to go home.
I always tell people that the physical aspect of this disease is NOTHING like the emotional aspect - for me, it is the emotional aspect that is crippling, I can always take tylenol for pain, but what can we take for emptiness? I think that I am right behind you on the advocacy front. I laughed to myself when you said that you had worked for the Network - I was wondering how you were so informed when I read your posts! ;) I just pulled the plug on a lobbying trip to go to Disney World. (I have never been to Disney, so there is that).
As far as dating other people with kidney disease, well, that has been a conversation. My thoughts are that if you are lucky enough to find someone that you want to be with, it is what it is. My first serious relationship ended because I would not have children (I have PKD) and because my life expectancy was low, and he was not emotionally prepared to deal with losing me. It is now 20 years later, and he and I are just now talking about who we were then versus who we are now. I am lucky that I not only have closure from that heartbreak, I also now have perspective.
We are in TOTAL agreement on the NKF - which right now is a serious conflict of interest for me since I am working as a COC, part of professional advocacy is playing well with others (even when you don't respect them), and well, that is not a strength on my resume. Noah, I feel your pain!
Ok, I will stop rambling now, and just finish with a heartfelt THANK YOU for sharing, and I look forward to reading more of your posts.
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Question? Would you date a guy with a kidney transplant?
Knowing myself, I probably would date him as long as his transplant don't fail. Now if I fall madly in love with him, I probably wouldn't care if he had to go back on dialysis because when I love someone and I also love their flaws and take on their problems as well.
To make a long story short, also I feel like I will always meet guys, but they will not take me seriously because of my illness. It has happened to me for the last 6 relationships in 4 years. Everything is good and he is really feeling me (likes me a lot) than as soon as I disclose my illness (dialysis) his attitude starts to change and two months later he is gone. It really hurts a lot but I get over it. I'm a very attracted woman and will always meet someone. However, I'm really not sure if I will get marry. I think about it all the time and use to cry when it happens to others I know but I'm learning just to date and enjoy life and whatever happens just happens. 8)
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Question? Would you date a guy with a kidney transplant?
Well, I'm married, but if I had fallen in love with someone with a kidney transplant in my younger years, I can certainly say I would have dated a guy with a transplant or on dialysis or with cancer or similar. My cousin has terminal cancer and his girlfriend is standing by him - in fact, they became engaged after he was diagnosed. I am the type to fall pretty hard in love with someone, so I know that I would not even have considered health a factor. I also never worried about finding someone with a transplant - I thought my appearance would be more of an inhibiting factor than health history since I was brought up to think of myself as gargantuanly fat. It never occurred to me that i would be seen as less desirable because of my health, but then it took decades for it to occur to me that my transplant could (and probably would) fail.
I asked my husband if he would have dated someone on dialysis and he said yes, absolutely. I think he's proved himself to be true to his word. :)
I just want to give everyone in this discussion a big hug. I hate seeing all of these lovely people who have helped me so much ever doubt their worth as a partner or in any other facet of life. And I definitely hate that anyone here feels alone.... :( :grouphug;
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I think I would date anyone that was compatiple with me, no matter what they had.
I personally think I am not the lovable type.... but who knows maybe one day?
I think we should try the renal dating site...
I agree about you Richard, you are very positive, and confident, funny, and handsome too! So it probably wont be too hard for u to find love now that u got ur Danny.
Alot of folks here are, I really love you all very much, I know thats a strong word, but its true. I love ya'll, crazy, insiteful, wonderful people, that make my life so much better and I thank you all :)
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just my :twocents; on love, dating, and kidney disease. .
When you are touched by chronic illness it changes your perspective on life. Many of us have put on a brave face and fought back and their are many people out their that are looking for people who are willing to face all the odds. It is easy to love someone when things are great, but it is hard to love someone when things get tough. Many people get married and the "for better or worse" actually means "well if worse comes around I'm bailing the hell out." People who are chronic ill genuinely appreciate the good days and are willing to push through the bad days....this is what makes us so lovable. I grow weary of people saying, "Well they are sick and could die, blah, blah, blah, " I continue to believe that NO ONE is promised a tomorrow and if you live long enough you will eventually be "sick" too! So if you are looking for some perfect mate out there who will never be ill, better take a number because we are human. All of us are fighting some sort of battle whether it is mental, physical, or spiritual.
xo,
R
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This is one of the best threads I have ever read. I think we can all relate to many of the comments. I am so proud to be part of this group. It is amazing how much you can love people you have never met. All the comments are great. I cried at lots of them, laughed at a few. :cuddle;
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Noah- Thank you so much for sharing that, youre amazing. I would like to be more involved in the "kidney world" maybe through some of the organizations you mentioned. Im only 6 months into dialysis so im still a newbie and still in a bit of shock over all of it and just trying to deal and learn the dialysis ropes, but maybe getting more involved would help. Any suggestions on where to go or what to do would be appreciated. You mentioned a couple of times in your post about vanity kicking in. That is one of my major issues right now. I just got a PD cath about two months ago, thats in addition to the hemo cath ive had for about 6 months. ive got tubes hanging out all ove the place!! I am having probs dealing with the way my body looks while im dwelling with all that fluid. I used to be so thin and hot and now I hate my body! Not to mention my confidence is totally shot. I think its just gonna take some time for me to get used to this new me. I am being referred for transplant in March and I know my bod is going to change even more after that so I think I should get prepared...
Richard- Again, thank you for your positivity and words of wisdom on this website. They are so very much appreciated! And maybe I was chatting you up just a little!! :lol;
GLM- I would love to be able to do a kidney patient dating site. I checked out a couple of other sites catering to people with medical probs, but they werent really set up all that well. I know if there are several of us on here dealing with dating issues then there have to be more out there right?? Maybe we could talk someone into adding a dating section right here on IHD. That would be convenient now wouldnt it?!! : )
Love Y'all!!!
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You're not really alone. Even though the people here are strangers (just by way of the fact athat we've never physically met) and are not physically present, there are many of us (maybe even all of us) on here who really do care about you and how you're feeling. Try to keep it in your mind that at any given time there are so many of us here that wish you well and care about what happens to you.
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Wow, I have found this discussion so enormously helpful - I guess the holiday period is one where the loneliness and alienation inherent to This Thing really take over - superficially its difficult to enjoy festivity and abundance when the thought of that next dialysis weigh-in session looms!
But more seriously, reading through the comments, it is obvious that so many of us feel alienated and alone simply because of what the complexity of our lives entails. I guess that it is impossible for anyone outside to really grasp, and perhaps they would rather not. It seems that people Out There fear their own physicality/mortality whatever, and are not at all keen to engage with such issues. My family are far away, in another part of the country, and I too am somewhat alone, although, to be honest, I have created quite a lot of boundaries, because at some point trying to explain a situation to friends who would rather not hear about it in too much detail, but are pretending to want to understand, is tiring (hope this makes sense?!) for all parties.
As to dating other renal failure patients, I have a great fear of the renal thing taking over my identity, so I guess for me personally, I am not sure that it would be a healthy thing, although the thought of being close to someone who knows exactly what the nature of my life and my anxieties is, is incredible.....
In conclusion, dear GLM, my heart goes out to you, and to all of those others who echoed your sentiments; I sometimes visualise this community engaged in a giant collective embrace, as so much of the longings of our hearts seem to be shared. Please know, my thoughts are with you; I share much of your experience, and perhaps, this too shall pass?
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It doesn't matter how close you are to your family, they don't get it - nor do they want to. It is so much easier just to try and go on with life as best you can without including too many in that aspect of your life. I rarely complain or mention my health at all to anyone but it really does annoy me when I get tired - particularly at the end of the week and I say I can't go out on a Friday night and my family turn around and say something like "You are not the only one who is tired, I am exhausted as well but I am making the effort." They make absolutely no allowances at all. As far as they are concerned I am lucky to have time every other day to sit back and relax while I am on my machine. Unfortunately you have to learn to deal with the loneliness but instead of falling all over them now when they have ailments, I show an equal lack of sympathy and understanding. As first I found it difficult to be that way but now I find I can do it with ease. And you know what I love the most...more than anything else is when they use me as an excuse. "I can't do that because I have to help Cindy with her dialysis." "I am going to tell so and so that I can't help her today because I am going to be over helping you with your dialysis." "I can't go to work today because I have to stay home with Cindy because she is sick." Meanwhile they wouldn't even know the first thing about how to help me with my dialysis and those phone calls are being made while I am running out the door to go to work myself. It drives me NUTS!! I never use my dialysis as an excuse for anything but for some reason they think they have the right to do it. That makes me feel lonely. I would rather be on my own than having family and friends use me as an excuse. They are getting recognition from their peers for being devoted caregivers when it couldn't be further from the truth. The sad truth is that we are all pretty much on our own and unfortunately we have to make the most of it.
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There is a big difference between sympathy and empathy. Mist people I meet are sympathetic to the point of nausea. I am still alive and kicking and sometimes just want them to understand more. But that it is near on impossible. Unless you are a carer or a patient, there is no way to know all the ramifications of dialysis. This disease is about 99% mental: the boredom. the constant routine, the constant illness ... I have a great group of Friends who try valiantly try to understand but just don't get it. I suppose I don't understand chemo either.
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I think it is important to remember that just because your friends/family don't "get it" doesn't mean they don't care. They don't have crystal balls that tell them exactly what it is like to battle a chronic illness. You can't expect them to understand something they've never experienced. If you have a friend who is going through chemo and YOU've never been through chemo, you can still be supportive by just listening to their fears and performing small tasks for them like helping with housework or some such thing. It doesn't take a genius to recognize a friend's suffering.
We experience most aspects of life completely on our own. We can share experiences and support each other through hard times, but we can't claim to experience those hard times in the same way. Ultimately, no one else can give us courage or resilience. Ultimately, we have to find these things within ourselves. If we encounter people who try to take those attributes away from us and erode our souls, we have to prevent them from worming into our psyche. We can't permit anyone to undermine us in any way. It's not easy, but our self-protection is worth fighting for, and if it means casualties, so be it.
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It never fails - just when I think I've heard everything, someone on this site recounts an experience that has me muttering 'huh!' to myself for hours at a time. There is a segment on The Colbert Report (fab political comedy program) called "The Craziest F*@#ing Thing I've Ever Seen". Lucinda, your story fits into that category for me. I cannot imagine my illness being used as an excuse for OTHER PEOPLE to book off from their responsibilities. Wow. I'm sorry you have to be surrounded by such nonsense.
I am fine with how my family and friends treat me over this. I don't want it to ever become a central topic, and for the most part it isn't, though people do tend to ask me 'how are you doing?' with a certain tone that seems to wink you know what I'm asking. I could just be imagining it, though, and once I enthusiastically tell them "Great. So great!" we move on to the usual chatter.
I think part of the problem is that everyone wants to be supported in different ways. I do not like sharing this aspect of my life with my parents and feel awkward when they ask, but most people would probably appreciate the interest. I appreciate any concern my husband shows, but some people might feel smothered. (OK, probably not with Gwyn. He's pretty mellow, but I can see how some spouses could way overdo the attention.)
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I haven't been on IHD for the past 1-1/2 week because I've talking for hours on the phone with a fellow patient at D. Before we started talking for long stretched of time we would make small talk at the D's waiting room while waiting to be called in, usually only 10-15 minutes. One day almost 2 weeks ago she mention that she was on facebook and she told me to visit the page, I went on fb and located her page and left a message with my phone number and the next day she gave me a call. We talked continuously for 3 hours that evening about everything and anything from what is going on our lives to the PCTs at D. Ever since then we are constantly on the talking whether she is doing her house work or when I go outside to deal with my pets(I use bluetooth so I can be free to do what I need to). It makes my work more enjoyable while talking to her. The longest I've been on the phone with her was 10 hours.
I thought ever since I came to this town that I was never going to find anyone to be friends with but now I have a friend that I feel very comfortable iwth. I told her that once it starts to get warmer that we'll have to get out more often to go on walks at the park or along the beautiful creekwalk here in town. She has already ask me to come for dinner one day but i will have to catch up on many projects thats needs my attention since I've put them off for over a week. I am going tell her this weekend for sure.
She came here 2 years ago and she was feeling lonely before talking to me. We both have our health issues, disagreements and personal problems to deal with but overtime I think we can overcome them. Do I think this relationship will survive, I don;t know because it is still way to early to tell but I know one thing and that is I made contact with my first friend here in town. Right now I fell like the luckiest man in town.
:yahoo; :yahoo; :yahoo; :yahoo;
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:2thumbsup; :yahoo; :2thumbsup; :yahoo; :clap;
That is awesome for you!!! Now get her to join IHD!!! :) Really it's lovely to have someone you have a connection with - even if it's born of shared dialysis stuff. At least you both can understand some of the issues you both face. I'm glad you're so comfortable with eachother - that's one of the most important things to me in a friendship or relationship.
I hope it continues for a long time.. whatever happens!! :beer1; :bow; :2thumbsup;
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Thank you Richard for the compliment, coming from a 'ladies man' I appreciate your encouragement. :2thumbsup; :2thumbsup;
BTW I did tell her about IHD and she looked around but she spent a lot of time in the recipe section, when I visit her this weekend I hope she is making something out of there 8)
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:2thumbsup; That "Chick Magnet" shirt worked for ya LOL!
I am happy you met a friend - good luck!
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:rofl; :rofl; :rofl;
I gotta thank Sluff for the present.
Thanks Sluff