What ticks me off about being a CRF patient

[jennyc]

Sorry i just really need to rant 

What upsets me about being a renal patient (again sorry normally very positive just have to rant a little):

Arguing with hubby about the house work not being done, not fitting into a decent pair of jeans, looking pregnant all the time. But those i can deal with and will mostly be gone soon (thankfully.... the nurses said my fistula is awesome, they can feel the thrill the whole way up my forearm to the elbow joint!!!! nearly ready to use!!!).

People thinking they have to pity me (hey i don't feel sorry for myself so why would i want them to...... MUM i hope you read this, love you though). People thinking i'm not strong enough to handle things when something goes wrong.... (again to my family) especially since i'm the strongest of all of them. My sister (who i love dearly) gets everything heaped on her by my parents, always has becuase she's the eldest, but of the two of us she is the weakest emotionally. They (i mean my mum) just keep piling her up with everything and she breaks quickly under the pressure (i mean badly breaksdown). Yet they know full well that i'm not as emotional (even now) and i tackle things more logically and i rarely breakdown, i mean everytime they've come to me with a problem (on the rare ocassion that they realise my sister is going through too much of her own) i've helped them solve it without any stressing. Yet the next time, the heap it on her again and she breaks, again. I think that is what has saved me in all this, i can detach very easily and things don't stress me. It took her (my sister) years to be able to cope with the fact that i have CRf, i had to sit her down and tell her "i'm not going to die, i'm not going to leave you yet" before she'd start actually getting close to me again. (but for some reason this all blows out the window when something is wrong with hubby or my son, i can cope with anything you put on me, but the only thing that scares me is losing them, i'm totally illogical when it comes to them)

What gets me on a daily basis is not actually feeling like a woman anymore, not being able to give hubby the one thing he wants most in the world (a giril). I get clucky but i just try to avoid babies so that it doesn't hurt so much but hubby is really clucky. It's even worse when my sister in law (who i've spoken to about it) shoves her baby girl in my face every chance she gets. I love the little sweety but it just hurts becuase she reminds me of what i wont have. And it would be OK if my sister in law was doing it out of some kind of blind ignorance, thinking she was helping me but she is a very vindictive person and does it only to hurt.

It also kills me wach time my son asks me for a sibling... he's too young to understand. At least with my best friend who has two children and is a single mum she kind of understands, she wants me around her children but she dones't force them on me. (I give them attention but she dones't walk up and thrust them in my arms unless i'm ready).

What kicks me even harder is being turned down to become a foster parent becuase of CRF  when we have a huge yard, great dog, great house with big safe fences. We live in a great street and we have soo much love to give (they refused to come out and say it but you could hear it in the tone of voice.... oh your sick how could you possibly handle a child). Yet the morons give children to bad foster parents (and back to bad natural parents) each day who torture, beat and kill the children in their care.

Sorry..... generally i'm so positive just that is my main issue with CRF, not being able to do what i used to and missing out on the really important things becuase people pity me or think i can't handle it. Being made into an invalid before i'm ready makes me feel infuriated becuase they are trying to box me and make me into an invalid.

Anyway thanks

Jenny

[Maker]

I know Jenny...I have days like that too   

Someone was complaining to me last night that she's afraid she's too old to have children, and I got kinda down because not only might I be too old, but I don't even have periods because of kidney disease!!  Not to mention that they would never recommend that someone on dialysis try to get pregnant, and not to mention that I don't even have a husband 

But today I had a nice chat with a friend and it helped me remember all that I have to be thankful & hopeful for.

Hope tomorrow's a better day for you...I'm thinking of you girl!

[cariad]

Wow, Jenny, that's a lot of heartache and aggravation. I applaud you for keeping it together so well. Family dynamics are by nature quirky and irrational, so while your situation may be unique, most all of us know what it is like for our relatives to push us to the brink of crazy.

The other stuff: what can I say? Another tragic loss for the foster children of Australia. It is wrong, everyone seems to understand instinctively that it is wrong, but it still seems to be the way of things all over the Western world. My grad school advisor has diabetes, and she wanted to adopt but found that state adoptions were closed off to her because of her condition. She said the way she was able to adopt was to put the word out to everyone she knew, and eventually two different mothers chose her to adopt children through private adoption. My point is, if fostering is important to you, keep looking into it and talking to people about it, you just never know.

I am really particular about how people react toward news of my transplant, so almost no one gets that right as far as I'm concerned. If I have had the 'invalid' response, I don't remember it. I have had the 'totally grossed out' response and the 'ooooooo, that's so fascinating because I have a morbid fixation with disease' response. I prefer the mellow response, but that one is rare. I think all you can do is to keep telling people that you can handle it, in fact, you want to handle it. It will sink in with some of them, and you'll hear "I keep forgetting that you're on dialysis." That's a good one.

Hang in there. 

[paris]

I am sorry.  I relate to the part about being the stong one and helping everyone else accept this.  You wrote a great rant!  Thanks for sharing your thoughts with us.  We are right there beside you   

[Hanify]

Seriously they turned you down cos of kidney failure?  Wow.  How stupid.  I'll have to ask a social worker friend if thats the case here too

[Lillupie]

I am so sorry you have to deal with this. I think what it comes right down to it people just do not know how to deal with someone who is on dialysis because our situation is so much more dynamic then the average disease out there.
 THat does suck that you cant adopt. Hey I forget, but are you on the transplant list?

Lisa
I think you can have a baby after getting a new kidney

[Brianna!]

Jenny, i'm sending a huge amount of hugs your way!       

I can relate to what you're feeling in SO many ways! I cannot stand pity, so that's why only a couple of my friends know about my kidney problems.

I'm usually a very positive person too, but sometimes you need to rant, and just cry a little bit.

If you want to email me, PM me, and i'll give you my email.

  again. <3

[jennyc]

Thankyou so much guys. I just got soooooooo argh this morning and yesterday. I think its the lead up to xmas. I think its mostly my mum, she really tries to treat me like i can't do anything, She tries to make me the invalid. Hubby is the exact opposite and expects me to be able to do everything (but i'd rather that, it keeps me fighting and he knows it). It's just we are hosting xmas this year and mum has tried to step in and do everything and told me not to bother myself. Bother with cooking, me!!!! I live to cook, i'm a Nigella in the kitchen. I only handed over the roast pork to my sister because i have to be the big one and admit that she does the absolute best crackling. Hopefully by xmas i'll be on hemo and running circles around the lot of them again!

Lisa, I wish i could have more but i can't. Had to have my tubes tied just after i went on PD cause of the risk of falling pregnant again. and considering pregnancy is what did this not willing to risk loosing everything. But Lori, i really hope after you've been on hemo for a while or had a transplant yours comes back, i have you in my  .

Thanks for listening, youv'e made me feel heaps better!

[sico]

You are a tough cookie jen. With all you've been through.

I do not understand why you two can't adopt. Having been on dialysis for the majority of your little mans life and working too. I'm sure you could do it. I wonder if they'd look at it diferently after you get a transplant?

I dont like the sister in law.

You're not any less of a woman because you cant have more babies.

[fc2821]

    Jen you a very determined person. Even though I am a man, I can relate to how you feel on many levels.
    First, my first wife had a heart condition which she was told would prevent her from having a baby. No adoption option either. This upset her till I lost her. She was always worried that she was dissaptiong. We were young and it felt like we lost a possible future. We were married for over 20 year before her heart gave out, and when you really love someone you get through these things together. I have grand kids, step daughter, and I love my present wife. But I not trade one minute with my first wife for anything. I don't know him but I suspect your husband feels the same.
     Having been "the care taker" and never till my accident needed help I understand howfeel about being the strong one. As someone who could have easily given up when I was told walking was not my future I wouldn't anyone turn me into an invalid. And, I believe you won't either. Keep going you are a very good person and those around you are enriched by you being in their lives.

[fc2821]

  And the errors in my previous post are free, no charge.  Just goes to show you shouldn't type with one hand at dialysis, espcially when your Bp is falling. 

[Rerun]

I don't mind when people feel sorry for me!  I like it!  It makes me feel better.  I would feel worse if they cut me no slack for being on life support everyother day for the rest of my LIFE!

                                  

[jennyc]

Sometimes i play the sympathy card with hubby, but only with him. He knows exactly what i'm doing and when i'm doing it. If i get a little depressed he lets me get away with it, otherwise he kicks me in the bum (not literally though. I already look like an abused wife with all the anemia bruises  ).

FC, thankyou and hey i'm a bad typist so spelling doesn't bother me!! I think not giving up is the main reason hubby can be hard at times. He doens't want me to give up. He and my son are my reason to fight. And you're right he wouldn't trade us for anything and i know he doens't hold it against me (not having any more kids) just sometimes i see that longing look in his eyes and i really wish i could give him a little girl.

Brad, adoption is hard and very costly. There are so few adoptions in australia now that you have to go overseas to adopt and then it's basically as bad as the organ trade. You have to pay in excess of 10k to Docs (nsw child welfare) and then the fees to the childs country which are 5-25k depending on the country and then you can only adopt from countries that have ratified the Hague convention for child protection (that's like 10 countries). You can't even adopt from the US cause they haven't signed. And Nepal (John's birth nationality.. he's Aussie now, naturalised) also hasn't signed so they are out. But it's more like buying a child than adopting one. Some of the countries even exclude you with health problems.

With the foster group (anglicare) they used our upcoming wedding as the official excuse (the hindi one that's already been done). There were two insinuations, it was either the health or they thought we wanted to foster for the money. Like as if we'd care about money when all we really want is a sibling for our son. The stupid thing is before our son (and until recently) we could barely afford our small family, now we are in a position to afford a larger family but have none to provide for. Such as waste really.

I don't like the sister in law either, she's actually johns sister in law. Some of the things she's done over the years.... i could start a whole post on 'bad things people have done to you' and i could fill it with just her bi***iness.

Anyway, i had a better day today. saw the surgeon and i have two veins coming off the fistula that i need to go back in and get tied off before my fistula will grow properly (they are vamperising my fistula). so they are doing an ultrasound in 2 weeks and then i'll see if i have to go back for day surgery to tie them off...... hopefully not, but i don't care as long as it gets fixed and starts to mature properly. Good new is though that the fistula can be felt the whole way up to my inner elbow so it will be good once these two troublesome veins are delt with

[Maker]

Wow, sorry you might have to have another surgery!  Sounds like eventually they will get you a good fistula though...keep us posted!!

[jennyc]

Fingers crossed, the surgery doesn't bother me itself. It the being awake part i'm not too thrillled about.....

[galvo]

Jenny, you are the most unlikely candidate for the title of"invalid' that I have ever come across! You are one strong and courageous chicky!

[jennyc]

Thanks Galvo, How's prep for your fistula coming?

[galvo]

Fisty is coming along nicely, thank you.

[jennyc]

That's awesome!