I got my life back. Now what?

[Metalangel28]

After a 6 year wait. I got a call 6 am april 20 2016. I had just switched my 6 year wait time 2 months prior from UPENN ( go elsewhere penn sucks) to Our lady of Lourdes in Camden Nj.
I'll be honest. Recovery was rough. I never had a transplant before and nothing really prepairs you because everyones experience is different. My biggest issue right now is trying to get normalcy. But i guess because i am on myfortic daily diarrhea  till 1pm is my new normal. The transplant team refuses to change anything. And i get that. But here is where things are kind of hard. I am engaged i am on disability and have been since 2008 for bipolar. I was considered disabled prior to the age of 21. When i was 25 my dad died so i got survivor benefits.  Before dialysis and everything i was actually going to school to be a social worker. But after dialysis and the transplant and working with many different social workers. I don't want to go back to school for social work.  But i want to go back to school to do something. I don't want to spend my life on disability. When i get married. I lose everything. The disability my insurance everything. As far as school goes. I am not good at math but i want to do something in the medical industry because i like medicine and i wouldn't mind the insurance a job with a hospital offers. I want to go to school to be a DMS. Diagnostic medical sonographer. And i think if i work hard enough i can do it. But i am nervous. My fiance only want to stay in nj 1 more year. DMS  if you get in is a 2 year program. If i can get in i am hoping i can convince him to stay till i finish. I just feel kinda stuck. Between wanting to go back to school and hoping i can do it. To wanting to get married but needing to make up the disability income i'd lose and then some with no real formal education and not much work exp. Then theres if his job insurance  would cover  my transplant meds. Copays after coverage. Since i would  need to definitely make more than my disability.  I'm  just frustraited and bummed out. 

[smartcookie]

Hi, Metalangel!  How is your bipolar disorder?  Under control?  If so, I think school is an awesome option.  Why not try an online school?  That way if you do move you won't lose your credits and can continue at the same university.  I can't speak to getting married since I don't know specifics, but I would advise you not to take on too much.  School is a big responsibility and so is work.  If you could find a part time position that allows you some free hours to do school work, say like a secretarial position, it could definitely work.  Only you know your body and bipolar and how much you can take on at one time.  With this transplant, you will hopefully have time to complete a lot of your goals.  Give yourself time and be kind to yourself.  I know I tend to take on the world's problems as my own and have chronic pain issues from my back, so I work 32 hours to give myself a break midweek.  We all need to be kind to ourselves and give ourselves time to enjoy life.  Part of the freedom a transplant gives you is being able to live without a machine taking up most of your time again.  Embrace that and try not to make life all about work and school.  Congrats on your transplant and I hope the diarrhea is resolved soon!   

[Simon Dog]

Why do you lose disability if you get married?   I dont think Social Security disability has this provision -o are you on some private plan?

Nothing wrong with shacking up, but you lose the future Social Security spousal benefits.

[Charlie B53]

SURVIVOR Benefits terminate with Marriage.

DO NOT get Married, Yet.   Plain and simple.  Just NOT yet.

Ask questions of Social Security.  I suspect your Survivor Benefits are greater than your Disability Benefits were.  Which may be why you were changed to Survivor, from Disability.

You need to ask SS if a Marriage would you still be eligible for Disability Benefits. If this answers is NO, then simply stay Engaged until you complete your Schooling.

It is not as if you HAVE TO get Married.  You can wait.

All good things take time.

Be Patient.

Let us know how you are doing.


Take Care,

Charlie B53

[Simon Dog]

If you do not get married but set up a life together, see an attorney to get things like health care proxies, wills, durable power of attorney, etc.

[Metalangel28]

Hi guys.
Yes the bipolar is under control for the first time in over 10 years. I know i lose the survivors benefits. But would i lose mine too? If my fiance makes more than i think 41k i think i lose everything. I dunno i gotta ask.  But online school.. hmm thats an option i didn't think about. Thanks.

[smartcookie]

https://faq.ssa.gov/link/portal/34011/34019/article/3781/if-i-get-married-will-it-affect-my-benefits  According to this, it depends on the type of benefit you are receiving.  If you are receiving Social Security disability, you should be fine. Hope everything works out for you!   

[Simon Dog]

My wife earned Masters and Doctorate on line (different schools), though she had to make a trip or two to the main campus as part of the programs.   She was smart about it and used schools that are regionally accredited (it's counter-intuitive, but national accreditation is lower on the food chain than regional); non-profit; and that have full time day programs as well.    The two benefits of this are:

1. Her degrees are indistinguishable from those earned by attendance on campus

2. No one looks at the name of the Universities and questions the legitimacy of the degree (try that with a Phoenix degree)

[iolaire]

I'm glad that you are trying to work with your disability and get an education.  From what I've experienced having an education means a lot for future income and future comfort.  Assuming you can maintain grades you should be able to transfer your credits to a school near where you move to.

[Simon Dog]

I'm glad that you are trying to work with your disability and get an education.  From what I've experienced having an education means a lot for future income and future comfort.  Assuming you can maintain grades you should be able to transfer your credits to a school near where you move to.

Check that carefully, especially with for-profit or online schools.   There are also frequently limits on the number of credits transferable, as well as an expiration date.

[Metalangel28]

I have something like 48 credits. I think what i am going to do is enroll when i move take the pre req maths and sciences that will eat up the year i am still in nj. Then when i move apply to get into the DMS program. Or something within the medical industry.

[iolaire]

Do you work with Vocational Rehabilitation Services?  I wonder if some councilor there might be able to help you through your disability benefit questions - of course that would be most relevant in NJ it might change as you move states.
http://careerconnections.nj.gov/careerconnections/plan/foryou/disable/vocational_rehabilitation_services.shtml

I had lupus in high school and worked with the Alaska Vocational Rehabilitation Services, they helped pay for some college with the goal of insuring I was in a good employment situation should my lupus flare back up and require a more flexible working environment.  20 years later I moved onto dialysis I appreciated that forward looking assistance since my office job of 15+ years was fairly flexible.  (It didn't hurt that Alaska had a strong budget at the time, I doubt they would be as helpful today.)

[Metalangel28]

Update:  I started going to school to get a servsafe certification. I have a passion for cooking, always have. I did try to get a job through DVR  but they don't return phone calls. I feel the bipolar is fairly stable. I wish i knew about risperdone 15 years ago, maybe i would have completed school. I know when i was on dialysis, i had a hard time working. But i no longer have that restriction. I am considering going to school for nutrition. I know i originally said sonography and while it still interests me, culinary and nutrition tend to go hand in hand. All i know is, i am itching to do something, something i like, that pays well enough to get a house, support a child ( shoupd we have 1) and an decent insurance that would help some of the expense in covering the 16 different meds i am on. But that plays into insurance. Hence i was thinking with dietary i could work in a hospital setting, or maybe theres a need for food service worker of a nurtitionist in a government setting. I'll figure it out.

[iolaire]

Thanks for the update.  Your plan sounds like a good plan, even if you choose to move to another field after some study, its should a positive experience to get the schooling started back up.

[Metalangel28]

Still in nj, we renewed our lease for 7 months. Jim hasn't gotten any calls on a new job yet and my servsafe course finishes in may. But once i get out of nj i plan on enrolling in college. I am thinking of doing online, because honestly, i've been sick ALOT this year. I mean i was born at 26 weeks so, i have a weak immune system to begin with, but on top of immune suppresents oh man. I was sick every month since Nov. I missed Alot of classes with this night school program because of it. My mom thinks i should wear a medical mask out. I hate doing it though, people stare and gove me dirty looks. But i use hand sanitizer often.

[iolaire]

But once i get out of nj i plan on enrolling in college. I am thinking of doing online, because honestly, i've been sick ALOT this year.

I'm a bit skeptical about online classes because it minimizes the social interactions, but it does protect you from other students.  I was homeschooled until seventh grade and find it easy to learn on my own - but I see the social aspect (and potential competitiveness as you build relationships) as fairly motivating versus sitting at home on my own.

My mom thinks i should wear a medical mask out. I hate doing it though, people stare and give me dirty looks.

I've not used a mask since my transplant and the someone on the transplant team was actually fairly disdainful of the effectiveness of masks on say public transportation.  They play up the washing hands way  more.

45% effective here:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3306645/

A better read:
https://www.nursingtimes.net/clinical-archive/infection-control/the-effectiveness-of-surgical-face-masks-what-the-literature-shows/205272.article

[SooMK]

Like iolaire says, do some research about the mask thing. I took public transportation pretty soon after my transplant and was dreading wearing a mask. I did some research and what I read was that they really don't help much. But the hand washing thing is a habit to embrace. I use the icky gel when that's my only option but otherwise soap and water is the way to go. Wishing you the best of luck in all your challenges. I hope the worst is behind you.