Help? Sensitive subject...

[jellybean]

Ok, so I'm not quite sure the appropriate forum to post this question in, so apologies up front if I'm in the wrong spot...I'm a nOOb I know not better.(this is the TL half of the jellybean team btw)

   
I spend almost 24/7 with this woman, I know her better than darn near anyone. Why is it nobody is willing to take my word for it? Hmmm, I have carted before my horse. My sweetie has a VIOLENT temper. While this is not the end of the world, it does need to be seen too for her good (and most assuredly mine). She wants help, which is awesomeness, but her doctors and family are putting all the blame on dialysis/kidney failure/stroke...whatever else you wanna rattle off thats the excuse . However, and I should know, this was a problem BEFORE any of said issues occurred, and when I bring this up I am told it was because of the steroids, and she doesn't have any "emotional" problems, only physical. Sigh. I'm sure all of you know physical illness has NO effect on your psychological health

Cutting a long, Oprah worthy story, short, the pooh has hit the fan cuz she went TOO far, and now...well now what the heck do I do? She is honestly out there trying to find the help, I'm as supportive as I can be, and her doctors and family are really hemming everything up. I can't find a therapist in this Podunk town who is capable of handling ALL the issues. I'm not dumb enough to think that the illness(es) isn't making a bad thing progress to worse, and just DANGIT!! WHY CAN'T I GET A LITTLE HELP FROM THESE PROFESSIONALS??!!  I do all I can, but crud even I have a limit I can't deal with the fallout of her tantrums, her illness and now the daggum law and ITS requirements. I have fifty useless pamphlets and a hundred numbers of people to call, and frankly they are all worthless. I get the same answer "its her problem" and "just leave her". Helpful....reallllly helpful. This isn't a hopeless situation, its just a problem she and I are not equipped to deal with, surely there is someone who is equipped? All I need is a point in the right direction and someone who won't go "awwww poor sick girl, a new kidney will fix it."or,and this is my, favorite "she seems so sweet, it can't be that bad". Am I surrounded by morons?? Or is it me thats lost my everlovin mind?? What kinda life is she gunna have AFTER the next "new" kidney?? All the emotional and psychlogical trauma they go through doesn't magically get fixed by a transplant, or hello?? Why counseling AFTER the transplant?? This is a genuinely loving and WONDERFUL woman who knows there is a problem and has every desire to fix it for herself as well as me. She's my little super hero and so I'm hangin' in with her 'till the end.

Help me out here guys!! What avenue am I missing?? I really do feel like I'm losing my mind, and there isn't to terrible much left to lose so this is a worrisome condition for me

Apologies to anyone who found this overly personal....but hey, when your fighting for life you gotta travel every avenue right??

Thanks for your time in any event!!
TL

[Romona]

Wow, I don't know what to say. I think you are doing a great job in supporting the woman that means so much to you. This is all terribly frustrating. You are so right that a new "kidney" is not a magical cure. Sure it helps physically. There are new issues that may come up afterwards. Living with chronic disease is devastating to all involved. Take Care of yourself too. Sometimes caregivers are so overlooked. i hope you can find someone that will listen and help both of you soon. 

[goofynina]

Hello to the other half of the jellybean team   I admire you for all you are doing for her and for sticking by her.  I know i put my hubby and my family through hell when i was on hemo, aint gonna lie, it sucks beyond words can ever explain thats for damn sure.    Is she on any meds for depression?  I am sure if you explain to her nephrologist her moods they will prescribe her something (if she is taking something already it doesnt seem to be working)  It is sad how the medical professionals take for granted how one really is by their appearance.  I know i never had any outbursts in front of them so they really didnt know the extent of it (ok, maybe i did once or twice)    but dammit, we need to be heard once in a while!!!   You sound like an awesome, caring person and i just hope for jellybeans sake you do stay with her    Sometimes you need to speak a little louder to get them to really listen to you.   Good luck to you and Jellybean.   Is there any way she can do PD?  The diet or the fluid isnt as restricted BUT she will still be very limited on the Cheese (phosphorus).       I know going to PD has made a huge difference in my life and i know i am a better person now that i am on PD.      I hope to hear more from you T.L.  Hang in there buddy, it will get better. 

[Sluff]

She is so lucky to have your Love. Hang in there.   

[Roxy]

Along with medications, sometimes talking to a psychologist or psychiatrist is helpful for some. However, often times you have to go through quite a few until you can find one thats a good "fit" for you. I think it's important to find someone that a person can generally feel comfortable with and trust their abilities. You are right that she needs help before a transplant because it's a long roller coaster road so the sooner the help for anybody that needs it, the better. Hang in there and I hope things get better for you both. 

[kitkatz]

Just realize there is no break from kidney disease for her.  Never a break. It is something she has to deal with every day of her life. It sucks.  It sucks to be so young and have it all come apart.  I am sure she has anger at life and at the disease built up with in her.  She is going to have to find a way to deal with her emotions.  Whether it is through counseling, hypnosis with a good therapist, or scream therapy.  I think if you are coping with a disease it affects everything psychological, mental as well as physical. Often friends and family grow apart from the sick person becasue they do not know how to deal with the person or the problem, thus they become isolated when they need support the most.

Hell, I do not know how to answer your question.  I have similar problems with anger and frustration at my body.  So I would say just be there and love her for who she is.  Sometimes that is all there is.

[jellybean]

She went to anger management (last year) and it did doodly squat. I have talked to her doctors and they don't seem to see it as a problem, the neph told me to get her to a psychiatrist. She has a hundred OTHER medical problems so finding a medication that A. Works and B. Won't damage or exacerbate something else takes time and is a trial and error process that psychiatrist (the ones around here anyway) don't want to mess with. I have actually had THREE psychiatrist flat out refuse to see her, wtf?  Her parents never saw the need for her to seek help because its all "normal" feelings and she is fine...morons. I'd like to point out here that her mother is going to school to BECOME a psychologist. She was born with renal dysplasia, tetrology of fallot...and a host of other problems, having open heart surgery before she was a year old. Medical problems are this chicks life and she HAS to learn to live with it, or else she is gunna die from it.

Kit, I am NEVER gunna grow apart from her. Even if we change the relationship, I'm here 'till the last day I have, no matter what she does or who she's with (I bring this up because she is gunna read this and worry I'm leaving). The anger and frustration with her body is definitely wreaking havoc on her life. She just wants to be normal, is tired of explaining to people what the thing on her arm is and why the hell does so MUCH have to be "wrong" with her? I've seen her get jealous of people who ONLY have ESRD. When her kidney failed she took it personally, as far as she is concerned her best friend ditched her. She also has taken the blame for its failure as there were some medication "issues" (which is BS, her nephrologist got lazy and didn't explain himself or what needed to be done).

What sucks most is, if we had the money to travel the hour north to Orlando I'd have a better chance of finding help. POVERTY SUCKS!!

[lola]

Jellybean, Hang in there I too am the caregiver and it sucks at times but I would never change who I fell in love with. At times we are the "easy" target since we are ALWAYS there. I am lucky Otto has never raised his voice at me but when he's not feeling well or having med problems he gets REALLY quite and says things under his breath but after a little  he remembers he better not be a A@$ since I give the Epo shot . It's sad her family is not helping you get her the help she needs, she's got alot going on and needs as much support as possible BUT so do you and that is something as caregivers we forget about is ourselves. After 18 years Otto still has days he worries I'll leave but NEVER EVER he's my rock and he doesn't even see that. 

[EMMA]

Hello there...

This is a difficult situation, to say the least.  We all know that when we are afraid or angry the first person we take it out on is the one we know will stick around and take it!!!!  Usually a spouse or parent.  She is angry about the dialysis and she is taking out on you...she sees you as healthy, with now need to attach to anything to stay alive...you are her whipping post.  That being said, i know that when my urea levels are high I go a little crazy.  My doctor told me this is extremely common.

Please sit her down and tell her you know she is angry...does she exercise, eat right...if you do this I think she may feel more in control of the situation and her anger/fear may subside a bit...

take care, Emma

[Romona]

I can understand why people turn to alternative medicine. When you can't get answers it is so aggravating. And not having money sucks too! You're doing a GREAT JOB!

[poohkari]

I can honestly say "i know exactly how you feel!"

Just like our better halves have their ups and downs, we do too. Thankfully, Wade and I are on opposite rollercoasters, or else we'd be in for it big time! Just be patient, realistic, and positive. I know it doesnt sound like much, and if you go to my previous posts here I b*!$ch an awful lot ... so I almost feel hypocritical telling you that. But, hey, everyone tells me that and it works!

[orphicdragon]

(formerly jellybean...and OP of this thread)
At this point EVERYTHING helps. I try very hard not to bitch, cuz hell I got two nifty kidneys and don't have to deal with dialysis techs (and trust me I hate some of them more than is healthy  O.o) or fistula issues. She started her intervention class today and hopefully that will make things MUCH better around here

[jellybean]

I hope that everything works. I hope she does stick with me through all of this. we have something standing in our way but that can be fixed. everything she does for me i'm so greatfull for. even though she doesn't realize it. she's what keeps me alive. My support system, my heart and my world. I'm glad that i'm not the only one with issues on dialysis.