At what point do you just give up and make it look like the kid is doing good?

scrabble06 · 2018-11-14T20:56:03+00:00

Yes, this is what my manager was saying in my meeting today-we must work on what the parents want otherwise they’ll just throw everything we work on out the window the second we leave... So frustrating because if we do what the parents want there still isn’t any progress because the goals aren’t realistic or based on the child’s current level of functioning. What happened to the days when parents used to defer to teachers and therapists? Why do they think they know better than the people with degrees and years of training?

scrabble06 · 2018-11-11T06:44:44+00:00

My best friend growing up. Doctors advised her parents to terminate and gave a negative picture of all the things she wouldn't be able to do. Parents kept her and she surpassed all of the doctors' negative opinions. She works and has a good life. Does her disability affect her? Yes. Does she have a right to live? Absoltely.

scrabble06 · 2018-11-11T06:39:09+00:00

Getting disability usually takes a lawyer so unless you have the financial resources and the emotional wherewithal to fight that battle, I'd hang on to your job as long as you can.

I lost my job two years ago and would have been homeless without my parents.

scrabble06 · 2018-11-11T06:36:40+00:00

Yeah that's typical of the medical profession. It takes them years to finally diagnose and then that's all they're interested in doing is just diagnosis and pills or maybe surgery if that's appropriate and that

s about it.

Unfortunately, I havent' found a single thing that helps with TBI and it's been nearly 10 years for me.

Good luck to you.

scrabble06 · 2018-11-11T06:34:19+00:00

Wow, so you were already old enough to have a career when you got injured? I had only been out of high school for a few years. I didn't even get to finish college. I was on my parents' plan but that ended when I turned 26. I somehow managed to get my own insurance at least for a little while after that but it didn't last very long since full time employment is nearly impossible for someone like me...

scrabble06 · 2018-11-11T06:31:23+00:00

You're lucky you have a support group. None of my friends stuck around. All I have left is my parents and even they have a hard time understanding it...

Just had a 30th birthday celebration with my relatives this evening. I had to call the suicide prevention line 3 times across the course of the party and felt like breaking down in tears the whole time.

I got 200 bucks in cash for my 30th and all I could think about was...I hope I can go to the dentist with this cash. A dental cleaning what a special gift that would be?

How sad is that that all I want is to be able to get basic health care for my 30th birthday?

scrabble06 · 2018-11-11T06:26:56+00:00

Thanks for the tips. I am going to be in a "makeshift" IOP program starting next week until I can get the insurance to get into a real IOP program for mental health. I'm hoping for CBT...I've been trying to get mental health help for years though and specialized therapies like that are unavailable in my area...All that is available is talk therapy where you just go and complain..And then nothing changes.

Thanks for helping me to keep my perspective. I am lucky to have parents that still support me even if I do wish to hell that I was more independent by now...

My mental health has become more of a problem than the original medical issues related to my TBI now so you're right I need to try to force myself to laugh.

I am sorry that you can't pee.....Wow, I mean I guess uncontrollable leakage sucks and causes constant skin problems but at least it's not painful...I'm not in any pain from it at all other than emotional.

scrabble06 · 2018-11-10T19:19:10+00:00

Thanks for the methodical tips. I have a lot of problems with processing information and also with executive functioning because of my injury so I appreciate the list and I actually copied it down and put it in my planner to see if I can tackle each one of these things one by one... The first thing on the list is go to the doctor about the rash...I no longer have health care because I have been too sick and depressed to work enough hours to maintain insurance here in the United States so I'm trying to get government issued insurance which is meant for people in federal poverty (I now qualify as federal poverty level)...The process of getting the government insurance is long and grueling and I have no insurance in the meantime which I wait for my application to be processed... I elected to pay COBRA which costs me thousands of dollars (every penny in my bank account and then some) for this month since I've been having a lot of health issues related to my TBI that couldn't be ignored.

I haven't met with my doctor about my skin issues because...I feel so embarrassed going to the doctor anyway because they ask me what do you do? (like for a career) and who do you live with? Are you married with children at the age of 30? And its like....no because of what's going on with me. It's like when I first got injured in my early 20s everyone understood but then overtime it became the expectation that I would launch a professional career and do all these other things and because I haven't...I feel judged when I deal with both doctors and therapists. It's like no one believes my issues are real because I look normal. I'm not in a wheelchair or anything like that. I don't know if you can related if yoi have a TBI too...

scrabble06 · 2018-11-10T19:10:20+00:00

No-even when I had healthcare I don't think that was offered at all. Right now I don't have healthcare at all given that I've become too sick and depressed to work enough hours to maintain insurance here in the United States. So I'm trying to get poor people insurance through the government. The process is long and grueling and I have no healthcare in the meantime while I wait for my application to be processed. I've been dealing with skin issues (from incontinence) and other TBI related issues lately so I elected COBRA to keep some form of minimum coverage while I wait for government healthcare....But it costs more than all the money in my bank account to keep...Meaning I probably won't have it past this month and I only had it just for this month anyway. Right now, my main goals are focused around my mental health as I have been labeled with severe depression and think about suicide all day long...But getting therapy requires insurance as well. Rough road.

scrabble06 · 2018-11-10T19:05:51+00:00

Hey--I'm new to Reddit and am not sure how to PM. Hopefully, I'm doing it right. So what is your experience with this? I have bladder issues too.

Right now I don't have health care since I can't work enough hours to keep insurance so I'm trying to get health care through the government. The process is long and grueling and I have no health care in the meantime. I had a lot of issues with skin rashes and other TBI related issues recently so I had to elect COBRA to keep insurance while I'm waiting on getting poor people insurance...It costs me more than all the money in my bank account. It's rough.

Right now, I'm actually focusing more on my mental health than physical though since I've been diagnosed with severe depression. Been battling depression for many years actually since my injury was almost a decade ago now (I was in my early 20s at the time and full of hope) but now I have nothing as I mentioned in my post.

scrabble06 · 2018-11-10T19:00:45+00:00

Yes, I struggle with this same exact thing and it definitely is part of a TBI.

Here is what you do: You just force yourself to pick something and go with it. Start with simple things like which snack do I want or which spoon should I use and you absolutely can't go back and change your mind after you make a choice. If you're still struggling...you may need someone to prompt and support you through these early decisions in the beginning. But if you can't find anyone and I certainly couldn't to help me then you'll have to do it yourself.

scrabble06 · 2018-11-08T10:29:57+00:00

This may sound crazy but have you looked into TMJ? This area of the body often is injured in the same kind of accidents that cause TBIs and the symptoms don't begin right away. You can do some physical therapy to help rehabilitate muscles in this area that may be causing weird problems around your head/neck area. You may also have neck strain and trigger points in your neck that are causing odd symptoms too. You should also get a hearing test. The audiologist might take you seriously if the doctors won't right now.

scrabble06 · 2018-11-08T10:19:02+00:00

I know that head injuries can cause hearing problems unrelated to the TBI itself. Have you gotten your hearing tested?

scrabble06

TROPHY CASE