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Author Topic: I should be happy.. but. why can't I be?  (Read 3511 times)
Punkybruister84
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« on: September 19, 2014, 03:10:54 PM »

 It's been a very long road. My ailments don't end at kidney disease. I am bipolar. I have Retinopathy of prematurity ( blind in right eye) and my vision in my left is fairly poor anymore ( I can't drive anymore) i have had anxiety issues as long as I can remember. I've never really fit in anywhere. My work history sucks. I have never been able to hold a job. My entire life has been a struggle. But. The good news is I finally have a donor and a transplant date. Dec 2nd 2014 at university of Pennsylvania Hospital.  I've been waiting for almost 6 years. I feel like I'm all over the place with my emotions.  I am feeling scared and sad right now. I don't have a big support system. I am trying to get out of the relationship I'm in now. The guy I'm with is more needy than anything else. I have been the one supporting us for the past year ( I'm moving back to my moms next month without him so thank god) the guy works but only part time. He thinks he's being supportive. But he's not. I can't even count on him emotionally. At one point
 I told him. I was scared. He said " you don't think I was scared when I was in iraq?"  He was in the army but got out 7 years ago. He self medicated with weed. And is given medicine for ptsd but refuses to take it. I've had a few surgeries this past year. Anytime I looked to him for emotional support. I got him complaining about how work sucks and he didn't want to be there... or how his back is stiff etc. He uses ptsd as his excuse for everything. He actually yelled at me 2 weeks ago because I asked him to take me to the ER I couldn't feel my fingers feet or face. My fingers locked by the time I got there. But he yelled at me because what if I went for no reason.. I said I can't move my hands there is a reason. Something is wrong. He then apologized after seeing that my hands crippled and locked. And blamed his aggressiveness on PTSD. He has put more energy in trying to get disability from the VA than looking for a better job. I'm not saying that there is nothing wrong with him. But he makes himself out to be a lot sicker than he actually is.

I am frustrated at this point. I'm 30 years old. I've spent my entire life sick with something and all I want is to meet someone nice and caring who isn't so fing needy. Someone who is stable. I want to have kids someday too. But I seem to be a loser magnet. I started writing a memoir.  I actually got so emotional writing it I gave myself jaw pain lol.   I feel like I'm drowning and I should feel happy.. shouldn't I?


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Punkybruister84
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« Reply #1 on: September 19, 2014, 03:30:01 PM »

I forgot I also have pcos and hypothyroidsm. . Which I've been newly diagnosed with. So given my health and my financial situation.  I don't even know of kids are even possible in my lifetime. Even if I find someone who isn't a jerk. Lol  I have thought about starting my own business. Just don't know what.. and right now. I'm too depressed to do anything. * sigh*
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jeannea
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« Reply #2 on: September 19, 2014, 06:53:58 PM »

I don't know Punky. Even with a transplant having kids is tricky. It can be done but it's tricky. I was diagnosed at 22. I knew early on that I wasn't going to have kids. I like to sleep in too much. I have nieces and they're wonderful. I think this is right for me. You can't depend on kids to make you happy. Either way, kids or not, it is not worth it to stay with someone who is wrong for you. You are not finding any happiness in your relationship and that matters. I have a lot of depression. I do have a great therapist and some Zoloft. You should consider a therapist. Many charge on a sliding scale if you don't have much money.

Give yourself some time. Wait to see how you feel overall after transplant. Then if you want to you can make a fresh start. You'll have some adjustments to your life after transplant. Different meds, diet, blood tests, etc. It will take some of your energy to learn everything. I hope your transplant goes well.
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Punkybruister84
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« Reply #3 on: September 19, 2014, 07:16:39 PM »

Thank you :). Yeah I have a psychiatrist.  I'm on a few different meds. I like her she's nice.  She doesn't see my bipolar as debilitating.  I've been on disability for bipolar  since 2008. The psychiatrist I was seeing at the time wrote a letter to social security about my mental state.. I am just frustrated because I feel like people think I'm retarded and because of that mindset I'm left in the dark about a lot of things. The one job I had I really liked I worked at barns and noble. I was hired and on orientation I was the only person out of 20 people who wasn't assigned anywhere ( you were given a post it note in a folder that said either bookseller or batista ( sp) i looked in my folder and my post it note said nothing. I went up to the manager who hired me and asked where do I go? My folder said neither here nor there? She said well. I dunno. I guess bookseller.  Shortly after the store opened ( it was a new store)  i had trouble with scheduling.  I was going to school and working and the manager kept scheduling me for times I had to be in school. I eventually gave my 2 week notice. Unfortunately my last week there I had bronchitis and ended up in the hospital. I came back on my last day with a Dr's note and my discharge papers and the manager working that day. Took my papers I overheard him say to another co worker " i guess we can accept this".

Point is i feel like even though I  was initially excited about the job. I wasn't treated fairly from day 1. I had in the past tried to work a seasonal position for the store but they wouldn't even give me the time of day. I even asked while there how I was doing and they'd say fine.
Most of the jobs I've had I have been terminated from. But never really given a valid reason as to why.

Thank you for your reply though. I'm gonna try and hang in. I want things to get better.. I just want a somewhat normal life..
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Deanne
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« Reply #4 on: September 19, 2014, 11:06:17 PM »

I admire your strength. Any one of your issues would be difficult to handle and would make many people want to give up. That isn't you, though. You're fighting through them all at once. Even through all of your medical problems, you're able to recognize that your boyfriend isn't able to give you support. You aren't blaming yourself for his issues like it seems many women do. You'd be crazy if your emotions weren't all over the map right now. Excitement and fear over the pending transplant, mixed with hope that it'll bring a better future, mourning the loss of a relationship, moving, even more medical diagnoses. That's a lot to take!

Is your mom supportive? It seems like anyone would be more supportive than a BF who'd rather complain than take you to the hospital. Can you take one thing at a time? Try not to worry about a new relationship, starting a business, or having children for now. Get moved back to your mom's house, get settled and try to relax until well after your transplant is over and you're medically stable again. Your future is out there. Try to be patient.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
Punkybruister84
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« Reply #5 on: September 19, 2014, 11:51:19 PM »

My mom is amazing. Yes, she is supportive. She has her own flaws though.  Growing up, she would tip toe around anything I wanted to do. I  liked art and music and she always told me I wouldn't make much money in either. Or in school grade. She'd constantly tell me " those people aren't your friends" and I knew this. But I was going with what was available. Most of those kids that came from decent homes , their parents had them in after school stuff. I didn't do much after school stuff. And what I did do was sports related. Not much art was introduced till I was in school. And no real artsy stuff outside of school where I could meet like minded people . She is supportive through this. But at the same time. When I talk about after transplant how I want to start my life and move on my own across the country. She's quick to shoot me down. Saying I have no support in any other area except here or PA. She  says things like you can just live with me .where ever I live. Or.you can try your pi en business but when it fails you at least have social security disability to fall back on.  I'm trying to be optimistic. And she's  being a little to much of a realist.  But yeah. Emotionally my mom is my only support. My transplant date is for dec 2nd . My brother is going to be the donor. I really appreciate it. But at the same time I feel bad. I feel bad because he's going through with it. But he's not excited or happy to help me. He's pretty much selfish. My mom and dad raised us to be there for your family. I take that seriously. My brother invested his time and energy in another older brother ( my dad had 4 other kids from a previous marriage) those " siblings" from the previous marriage  turned out to only be interested in dad's money. And what they would get from it when dad died. When dad died and the will said my mom got everything they stopped talking to us. The 4 people I knew of as my siblings growing up didn't give a rats ass about family they just wanted their dad's money.. so yeah. My brother put all his energy in that relationship that fell apart once dad died. Now he's not close to anyone. For the most part my brother has always been selfish. He will usually only do something for you if he gets something out if it. Which is sad. So he's doing the transplant
 But in all honesty he doesn't really want to. But I don't have anyone else. I have my mom for emotional support. My brother the reluctant donor. And a younger sister who needs to mature more before she can be involved. But she's a little more understanding than my brother about what I'm going through.  . I a lot of times feel like I am my own support. Like I'm my own cheerleader. It's hard. As far as 1 at a time. I'm trying to.. it's hard. But doable.
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noahvale
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« Reply #6 on: September 20, 2014, 03:16:46 AM »

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« Last Edit: September 19, 2015, 08:21:49 AM by noahvale » Logged
SooMK
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« Reply #7 on: September 20, 2014, 06:24:16 AM »

Hi Punky, It seems to me you have a long enough list that I'm not sure why you'd think you should be happy but having a goal of getting there seems great. The other suggestions to find someone neutral to talk to is what I would suggest too. People on the outside can sometimes provide us with that "duh" moment that we need. If it's a group environment we can end up helping someone else at the same time which may provide that feeling that we all like to have but can get lost when we have such major struggles in life. Writing about your life can help add clarity now and be a great reference later--you can see how far you've come.Congrats on the transplant date. I hope to hear how you're doing as time goes on.
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SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
Punkybruister84
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« Reply #8 on: September 20, 2014, 07:57:37 AM »

Thanks guys :). I'll look into that organization.  I am 20 mins from Philadelphia but I'm sure they can direct me to something .
Thanks again.
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jeannea
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« Reply #9 on: September 20, 2014, 01:12:00 PM »

I think in Phila the transplant support groups meet at Einstein. Although it's been a little while since I looked. I despise driving the Schuylkill Expressway.

The problem with family is they know how to push all your buttons. If your brother is donating, maybe he's got a little bit of unselfish somewhere.

For now just try to stay as healthy as you can until your transplant.
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