Can't keep it all in anymore.

[alewis328]

Hello all. I have spent the majority of the last few days reading this forum. Taken me awhile to work up the energy and courage to write my intro. I'm the type to avoid talking about things because it may cause my very well held together wall of "I'm fine" to crumble to dust. Can't allow that to happen!
First off, my name is Ashley. I am 26 years old and am caregiver to my boyfriend, love of my life, and best friend. Lucky me, they are all the same wonderful man D (as I'll call him on here) is truly the most amazing part of my life. The fact that he is currently laying beside me in a hospital bed for the second day in a row (third trip in 2 weeks), makes me want to; cry, scream, break things, curl up in hole, etc.
Oh just great - my battery is now dying on the iPod I am using to write this. Time to go home and let the dog out anyway. Please forgive my very brief and uninformative first post. I shall return, fully charged!
I am going to just stick with the basics on this 3rd attempt. But have no fear. I could ramble on and on about this because I rarely talk to anyone about it.
D is T1 diabetic. Almost a year ago to the day, we found out his kidneys were functioning at 5%. This was a complete shock. He was in no pain and was still urinating. Tunnel cath was placed and In center hemodialysis done for 6 months.  Switched to PD. It failed. Which leads us to this past month. Non stop vomiting and nausea, major fatigue, can not sleep at all, etc. Even after switching back to hemo about 2 weeks ago. D is currently admitted to the hospital. This is day 2 of this stay. We have been here 2 other times also in the last couple of weeks   He is supposedly having his case presented to the panel for a kidney & pancreas transplant. We have completed every requirement.  I won't even get into that right now!
D and I have been together almost 4 years. The first 1 1/2 years were like a fairytale. We were so ridiculously happy. Since then, everything has gone to hell in a handbasket. I am not a whiner or a complainer.  My favorite saying lately is "Put on your big girl panties and JUST DEAL WITH IT" , but I am getting to the point where I need someone or something before I lose it. I have no family. D's family does not help at all. I do have some good friends but they don't really understand and mostly I feel as if I am just bringing them down when I try to talk about it.
I am so happy I found this forum. I love to learn about everything that is affecting our lives. Knowlede is power right? And I so look forward to having a chance to ask questions or just rant and rave to people who actually know what it is like. 
This doesn't even come close to describing our situation or even us but I'm going to post before it disappears and I have to flip out

[MooseMom]

Knowing that you will come back and give us a bit more info on your bf and y'all's situation, I will say one thing now...here on this forum, you don't have to hide behind that "I'm fine" wall.   We see through those sorts of tricks.   I hope you will find that our community will be one of your bricks with which you can construct that wall for the sake of other people who you think might need it. 

Come back as soon as you can and give us more news, and maybe we can be of more specific help.  I'm glad you found this forum.

[willowtreewren]

Welcome, Ashley!

Yes, this is a good place to be able to share.

 

Aleta

[monrein]

  Ashley...I look forward to knowing you more through the forum and I hope you'll find the support and information  here that will be useful to you both.

I started dialysis myself the first time when I was 26.   

[Bajanne]

Welcome to our community, Ashley!  I am glad that you had a read and decided it was worthwhile joining us.  And it definitely is.  Here you have information, support and encouragement.  Here you are free to rant, rage, rave or just vent freely!  You are now part of the IHD family 
Looking forward to your coming back fully charged and letting us know how things are with you and with your boyfriend.




Bajanne, Moderator

[Ang]

 

[alewis328]

I am ready to scream! Or maybe just rant and rave silently to myself so I do not wake D up. I have seriously wrote out my big ol long introduction twice now. First time it said there was an error and POOF! all gone. I was working on the second draft when D woke up. Put it to the side for awhile and finally came back to it. I just finished it and went to post, all glad that I was done with it and can start meeting people. I hit Save and it tells me I timed out, try again. It is all gone! AHHHH!

[MooseMom]

Yeah, and computers are supposed to make our lives so much easier...

OK, here's the deal...no one in your family and none of your friends are going to "understand", so don't bother trying to get them to.  It's not their fault.  It's just that it is very difficult to understand what someone is going through if you have not shared their particular experience.  But that does not mean that they do not care or that they do not want to help.  Well, actually, it IS true that you will find out which people in your lives really DO care and which do not, and it sounds like your bf's family don't care that much.  Think about it...if you found out your friend had cancer or your neighbor was being abused, you'd feel bad for them, but you wouldn't "understand".  That doesn't make you cruel or stupid.

So, when you need to scream or yell or vent or ask questions, this is where you come.  This is exactly what this forum is for.  We all need to let off steam and give voice to the anger and fear we feel, and this is a safe place in which to do that.

Come back and post more about the two of you when you feel like you can.  We are patient; we will wait for when you are ready.

[Jean]

Thanks for joining us. You will find all the info you need to help you in this journey. the thing about this kidney disease is, you think you can handle it with no help, and then, breaking a fingernail or something that would not ordinarily bother yopu becomes a major trauma. You are not in this alone. We are here for you, so feel free to post, rant or rave. We are all in the same boat.

[billybags]

first of all alewis328  welcome to the site. I am glad that you have joined our family. Reading your post I feel sad that another young person has joined the rocky road of dialysis. No one knows why certain people have to go down this road, its shit.  I hope with all my heart that your boyfriend gets a transplant. Please come here and vent when ever you want, ask questions whether you think they are silly or what. It is a scary road to begin with, it will make you angry, it will make you cry. We are here for you and you will get through this, it will get easier. Try to be positive for your boyfriend, he needs you to be there for him. You will find that your friends do not understand, so try explaining to them. Look forward to your posts.   

[kporter85db]

  Ashley. You will find that you are among friends here. Vent all you need to and ask questions when confused or curious. Here, you wont be judged.

[alewis328]

Thank u all for ur kind words. Brought tears to my eyes. Although these days it isn't that hard to do! Today finds us on day three of hospital stay 3 this month. I just got back from lettin the dog out and he was sleeping hard. So I let the nurse know I'm here, left him a note, and am sitting outside in the sunshine. It could not be any more beautiful outside. Kind of bittersweet though because if things had gone according to plan, I would currently be on my way home from a float trip. The only activity this summer where I had every intention of going and acting like a carefree 26 yr old. Haha. I do believe I will just give up on that for awhile.
I've decided that I hate the term "girlfriend".  It just doesnt encompass our relationship. This man is my life and has been for 4 years. We have every intention of getting married but this illness has made that impossible. They will pull every ounce of financial and medical help we get. Not that its much. But still, not an option. I always joke and say by the time we get married I'll have to match the tennis balls on my walker to my dress.
Tomorrow is Monday and that means back to work for me. I work in HR as payroll and benefits coordinator and this is a payroll week. Not being there is not an option. Plus I have already missed so many days. The company I work for is simply amazing though and so is my boss. I would be so screwed anywhere else.

[Razman]

  Its great that you joined and I know that you have found the best place to ask questons and talk to others that will understand.   And there is no need to say "I'm fine"   We understand what you must be going through (we've been there) .   I hope that you will visit often.   

[lmunchkin]

Welcome Ashley to IHD.  Iam one caregiver out of many on here, and we totally understand your fears at this time!  Just relax and take it moment by moment and it will get better with time!  It is not an easy road, but the bumps will get better as you go further in this travel!  Be strong for your loved one. Right now, marriage is not on the agenda for you both right now, as he needs to do dialysis and get to "feeling" better. 

It's not going to happen overnight but your being there for him is what he needs to help him through!  I too, work for an employer that will bend backwards for me. I too am so blessed to be surrounded with a church family, friends and especially IHD.  Notice, I did not mention family members!  I dont think its because they don't care, cause I know they do, but I just think they have stuff going on in their lives too! If they don't care, its on them, I still Love them nonetheless!

There is a Caregiver section on this site.  Go there and read.  Im sure you will relate!

Again Welcome, and keep us informed, ok?  Hang in there Ashley!  You are his Angel and His Rock!

lmunchkin     

P.S. Arm yourself with knowledge of this disease!  The more you know the more you can advocate for him!!!!

[Poppylicious]

  Ashley!

Kind of bittersweet though because if things had gone according to plan ...

I rarely plan anything anymore, and when I do I'm very much aware that those plans can be crushed by something kidney-related.  But I always was a pessimist (this way I don't get to be disappointed when my plans are spoilt but am amazingly happy when everything goes the way it should!)

My Blokey (husband) is on haemoD so I've probably been through all the emotions and frustrations and fears that you have.  Come back often and use us as your support system.  We're a brilliant bunch of people.

 

[Rerun]

Welcome Ashley, sorry you are having problems posting.  Please keep trying.  We are glad to have you and D join.

Rerun, Moderator       

[alewis328]

Thanks for everything guys! Rumor has it we may go home tomorrow. And he looks so much better today. I love this forum. I consider myself lucky to have you all in my corner 

[RichardMEL]

Welcome Ashley!!!

I so read in your posts what an awesome and amazing young lady you are and how much you love your "boyfriend" (only because I am sure you hate the term "boyfriend" for what you have!!! - how about life partner or soul mate?). Anyway I think it's beautiful the passion and love you write with. Despite everything you're both battling through, and these shared challenges I am sure are only bringing you both closer.

Can totally understand the disadvantage to getting married, but clearly you don't need a piece of paper to complete your bond so wouldn't worry about that

I'm glad you're here. This is a difficult time for you, but this is a place you can vent and come and find other caregivers and people who have some idea of the sorts of things you're going through.

Finally goot on you for going and sitting in the sunshine. Remember it's just as important for YOU to remember that YOU need to nourish your soul, have a mental and emotional recharge/break from time to time and that if you're totally under the weather you're no good to anyone - specially not your beloved.

Hang in there!

RichardMEL, Moderator

[lola]

Ashley 1st 2nd you sound so much like me. Otto and I got together at 18 had a blast till found out he needed a kidney at 21, got 1st kidney life was grand got married had 3 kids. Otto had 1st kidney almost 15 years then  kidney went bye-bye. Dialysis started scared the hell out of us, switched to home-hemo got 2nd kidney and 6 days later DR made BIG mistake and kidney 2 went bye-bye, now 3 years later still on Dialysis (in-center). It all sucks but because of this site they have kept me sane.(ok not really but nobody can do that job. LOL) If you need to just vent we are here for ya

[Cordelia]

Welcome, here!          

BTW, I LOVE your one liner, "Put on your big girl panties and JUST DEAL WITH IT"!           

Hang in there     

[drgirlfriend]

 

I'm glad you found this forum! It has been a lifesaver for me and I'm sure it will be for you, too. I completely get the "I'm fine" bit. I will disappear from my friends for days just so I don't feel like a burden or a downer. It's a very bad habit and I'm working on it. Please don't let the "I'm fine" rule your life. It doesn't work. Vent on us here. We get it.

[jbeany]

 

Welcome to IHD!  You are certainly right about the lack of help if you get married!  Doesn't mean you can't have a wedding ceremony, though...just don't make it legal with the state.  You can even legally change your name to his if you want!   

jbeany, Moderator

[lmunchkin]

I liked the joke of "matching tennis balls on walker to her Dress", ha, that is funny!

lmunch   

[CebuShan]

         Ashley!
I am a D patient and I understand the "I'm fine". Can't tell you how many times someone asks "How are you?" and it's easier to just say "Fine" then going into details and watching their eyes glaze over!
Please come back often, you have not only a support group here, but a Family! Not by blood but the best kind: Family because we want to be!   

[alewis328]

Hello all. I have been away from the site for a few days. Not by choice. We ended up back in the hospital on Friday at about 1am and didn't get home until late that afternoon due to fluid overload. I then tackled this house with a vengeance!  It is still not where I would like it to be but I can at least stand to be here now.
I am unfortunately dealing with the fluid overload problem again.  As I type this, I keep hoping for more replies to the question about it that I posted in the general dialysis topic. I am just praying we canmake it through until 6:45 tomorrow morning. He goes in for D then and they will be challenging his dry weight. I also have about a million other questions for the techs there, so I will be taking him tomorrow. Thankfully, it is a holiday and I am already off work. I missed work yet again on Friday Sometimes I feel that this stress will one day get the best of me. Good thing I am so darn hard headed & determined!
Take care all. Your posts often bring a rare smile to my face these days.