Rant..Disability review gone wrong..abt 5 hrs sleep in a week

[MostlyShell]

Hey all,

I really didn't know where else to turn, who would want to hear it, and that's assuming you guys would but I can hope.
Story starts that I have been on disabiity since 2004 for bipolar disorder. During that time since, I got smart, got off psych meds after neuropshychological exam showed extreme delay in my hands and cognitive thought processes.

1st neuro did MRI, found lesions, but not enough, but the one on frontal lobe he said explained the bipolar symptoms when they were around.  

Ultimately, now I have MS dx, along with Ehlers Danlos, and type 3 diabetes (diet controlled).  I have been in a massive depression, lost most of my support people cause I shut them out (I guess), lost 2 of my long term docs, and SSI is reviewing my case.

I have filled out papers twice for them and now they want more papers from me, and today I went in for mental interview. Guy was a real jerk. He kept forcefully telling me to speak up and give him eye contact. Well, I know that from therapy that part of frontal lobe damage is difficulty maintaining eye contact, distracts too much. Also, my voice is weak, I didn't feel well from the drive there. And told him. But, he kept interupting me and wouldn't let me explain any answer he asked me for. And not to mention, some, frankly I'm ashamed of. I shouldn't be but am. Do I cook dinner? Hardly any more, no energy at the end of the day. But he didn't give me time to explain that. I cried the entire time and he kept saying I seemed angry. Well, I told him that yeah I'm angry at myself, my disease.  should have said at him too. But, mind was so cluttered. Feeling that everythng is riding on what I say and all I can do is act like a baby and the meeaner he got the more upset I got.
When he finished writing feverishly, he asked if i had any questions, I said yeah, do you know a good therapist?  I didn't know what else to say.
Hours later, I knew what I should havve said but it's too late now.
Can't I have someone come in to those things with me to represent me since my brain is fried? he wouldn't alllow my husband, but what abuot someone else?
I have a pain appt. coming up and am freaked out. I just don't know.
Medicare kicked me off of Copaxone bbecause they wanted to see improvement in 6 months and neuro can't show evidence of that till a year at the MRI.  And I'm having bad, bad symptoms.
GRRRRRRR!!!
I'm so sorry to rant, but warned ahead of time...
I've  been laying here all night, hurting, crying, hurting some more, wishing to talk to someone who understood. So, that's why I'm here.
That's why we're all here, right?
Anyway, gonna get up and move around a little, legs are awful, can't sit still too  long, or up too long, but such is life...
Any advice..anything...would be so awesome....thanks to all of you who have been so supportive to me,

Michelle

[MostlyShell]

You and I share a very similar story. Except my psych hospital stay was in my early twenties. I had been to so many docs, been taken to the hospital by ambulance, dx'd with flu, or maybe "it's just stress".   I thought I was crazy. I remember watching a show about hypochondriacs (spelling?), and thought maybe that was wrong. Anyway, my career was slipping away from me, my finances out of control, etc. And was suicidal.
I stayed with mental health for about 4 years and wonder to this day, how many of them, if they had an MRI, if they could be medicated differently or if something else is wrong with them? Like us...except they are so stoned from the meds they give that they can't think properly!
And I'm with you on the earlier dx. If only....maybe my physical/mental wouldn't be so bad now. And maybe I could be a functioning member of society...but, I don't give up hope, maybe one day I'll find some thing that I can do...until then...at least I've got my children...my biggest fear is when they leave, and how useless I'll feel...
Thanks for sharing your story with me, makes me feel like I'm not the only one....
Hugs,
Shell

[Heather8]

I lucked out with my ss. I got mine right away with no problems at all.
I also want to let you know I was admitted to a psych hospital and put on some "mood enhancers" I knew I wasn't crazy . I kept telling my doctors that I don't feel right. Something is wrong. I was a teenager when the weird symptoms of MS sprung up. The doctors thought I was just trying to get attention or going through "rare" hormone changes.
I also got smart and went off everything... Years later in my twenty's it took losing my vision for doctors to look more into what I have been saying. I wish I could go back and say to those doctors... If you just would have taken the time to listen and communicate with my other doctors I may have been Diagnosed sooner and I might still have vision in my right eye I might not be as disabled had I had early care.

[amers789]

I am sorry I don't know anything about disability and I hope personally I never have to but I am so so sorry you had such a rotten experience. It is bad enough that you have to go through all that pain in the butt paperwork but then to have a totally non-sympathetic doctor is just horrible. I hope the next visit goes much better and I believe you have the right to have someone present, it just does not seem right for someone to deny you that opportunity. I pray you will get some sleep and relief from your pain. Prayers and hugs.
Amers

[meg321]

okay, I'm back, sorry i had to run, I was late for a lunch date...I am time challenged now...

Anyway, Im sorry the interview got you so upset.  I just got sick doing the first application, it took me a couple of days, then I was sick for a week.  And they kept sending more papers which my husband helped me with.  I think the Dr's evaluation and a shrink evaluation is normal.  

Fortunately, i had applied by accident originally and it just kept going.... someone told me it really wasn't worth it, so I was not too concerned.  That helped keep me calm or I probably
would have done the same as you did. But it all worked out okay and I got my disability.  And after all of that, my MS Dr. told me they would have done it for me....

I am rambling and have no idea what i am talking about or if this is really helping you at all..

hugs, meg

[zenhound]

Ugh, sorry you're having to go through all that.

For what it's worth, my union rep has told me that if I do ever get diagnosed with MS the Americans with Disabilities Act (ADA) has a clause in it that allows you to have representation at any time for any reason.  She could be wrong about that, but it's sort of their job to know these things.  She was saying it could be anything from a work meeting to a manager at a grocery store stopping you to question you about suspicion of shoplifting.  Maybe that rule is excepted for disability interviews, I don't know.  But something to look into.  

[meg321]

Hi shell, I am so sorry you had to go thru that.   I do the same thing when i get stressed, not only do you feel like  awful, stressed, nervous,out of control and it just gets worse....and if someone handed me a gun in the middle of it, i would probably shoot myself.

gotta run, but im not done

meg

[MostlyShell]

thanks for the replies, sorry it's been so long.  But good news, well, it's never good news to need SS help but they decided to leave me alone for now. I guess you are right SickMomma_PDX, cause they didn't even send me to the pain doc.
They made me really mad, but at least now I can concentrate on getting well.

Lots of love,
Shell

[SickMomma_PDX]

If it's any consolation, I've heard in other forums (fora?) that crying and being unable to keep up with the barrage from the person doing the psych exam is helpful in supporting a claim for disability, either SSI or SSDI. Because, really, if you could keep up with a barrage of questions, with good eye contact, etc., you might not need the disability payments. But I know that's small consolation right now.

I'm sorry you're going through this. I hope your review is over soon and renewed. I know they don't allow family members in those kinds of exams, but you might be able to have an advocate of some kind, perhaps from the local MS Society chapter or a lawyer type (although I know the latter generally costs $$$, which you probably can't afford if you're on SSI).

Hang in there!

[grannyhotwheels]

I do understand what it's like to lye in bed tossing and turning in pain.  Getting up doesn't help either. I've definetely been in that place.  In fact I've been in that deep dark hole trying so hard to climb my way out. The thing is I needed help getting out and didn't feel like anyone cared enough to help me.

I look back now and can see how wrong I was.  I was the one that pushed people away.  They where still there just waiting on me to reach out and take their hand.  I'm sure some of your supporters are waiting for your hand also, but you gotta reach out to them.

I'm not sure about my next comment here but if you want someone in the room with you can they really say no?  I don't know the law on that one but I have always insisted on someone being with me because of my memory issues, and they have never refused me.  I hope someone else will know the answer to that one and chime in.

I'm so glad you are reaching out to us and I pray that someone here can give you some good advise.  I will definetely give you my support and a shoulder whenever you need it.

I'll be praying,
Carol