one small step, one giant leap

[Guest tearose]

I've been processing it all since my hearing on Tuesday...after one hour what seemed like an assortment of unending questions...the judge does declare I am and have been disabled since I presented with my first symptoms. However, since I attempted to work for just a bit more than what is usual for a "failed work attempt" my lawyer has 30 days to explain why the judge should allow the insurance to be approved. Basically, I won't know for another six weeks what the judge will decide. How can it be that I will be punished because I tried to work??? I am numb and frustrated.

I said to my husband that I have NEVER been so emotionally "spent" as I feel right now. I had to lay out all my worst problems and weakness and progressive problems before this judge and bear my vulnerable soul and daily life's trials...only to be "validated" and yet not get the financial support I desperately need....I pray the final decision will be to grant the coverage.

I feel that because I got all the challenges out and spoken...they lay before me like fragments of broken glass....I need now to pick up these pieces and re-invent, re-construct my life.

It may be one small step for some, but today I took a giant leap. I found a "chronic illness" psychologist not too far away and made the phone call... I made an appointment for next week. I have such a hard time thinking of turning this over to a "professional" to see if they can see something I can't. Why is this so very hard for me? tearose

[purplefocus]

Tearose,

I am so sorry you are having to go thru this hard time. If the people that had to make the disability decision could spend a day in our shoes they would have no doubt of approving you. It is just the system is so hard on everyone so I guess they can weed out the fakes. Stay positive. Surely your lawyer can make the judge see that you need this. I too was punished for "working". I thought I was doing the right thing because I didn't want to go on disability but what we did in the past we can't go back and do anything about it. I feel like if I was approved anyone can be. I wish you the best. Our mental health sometimes takes a beating. I know mine does because from the outside most of the time I look fine when really I am not in the least bit. Most people just don't understand. I wished I could find a book of encouragement for people with chronic illness so on my bad days that I can only lie in bed I could read it. Don't give up hope.

Paige

[corina]

Tearose,

I'm very very sorry for you. This makes me mad and feel sad. In my opinion the judge should COMPLIMENT you for trying to work while you actually couldn't do it. I hope you can work this out with your psychologist. Don't feel sad about needing a psychologist, in having all this POTS-problems in the last more than three years I see my haptonomist every once in a while. She helps me out with my mental problems and helps me find the right road again. POTS isn't just physical (as we all know). Wish you all the best tearose and hope you get your disability (I realize this 6 weeks will be awfull long for you),

Corina

[DancingLight]

tearose,

i commend you for fiding a psychologist to talk to you and taking that step. for me, that support has been invaluable!

i don't know why the disability process makes us feel so frustrated, angry, etc...but i found it, like you, to be one of the most demoralizing experiences of my life. the whole system is created and run in a way that really makes you constantly feel like you have to justify yourself and explain yourself.

i also found it so exhausting. i also had horrible experiences the whole way...when i met with the judge, i received my answer later and was not approved...and the things he wrote in the report made me cry and cry and yell and yell. basically...he said i was LYING about being sick, and b/c i could knit or do a little hobbies on the side, i could work full-time...including in a job such as a hostess! can you imagine working as a hostess for 8 hours with this illness? it wore me out in high school and college before i was sick!

sorry, didn't mean to go off like that. but it is a process that does make you feel very vulnerable. i mean, these people have access to every single piece of your medical record. you are exposed to strangers. at least that is how i feel. these things that we hold sacred and private, become "public"...i also feel that way with the medical profession and some doctors...it's like here's my body and it isn't sacred any more! eeeek!

so, i just wanted you to know that you are not alone in feeling such intense emotions. the good news is that you WERE believed by the judge to begin with. and you have a lawyer. it is out of your hands for a while until you hear for sure...and that sense of power loss and loss of control are also very hard to deal with! the waiting is so hard.

these are the times, if you are religious or spiritual...i try to give what i am feeling to god b/c i don't have control and have done the best that i can to create the desired outcome (in this case your disability approval)...

i don't know, the whole process IS demoralizing and devaluing. i am not sugar-coating anything today am i???? and you are metukah! what am i thinking?

well, i really just wanted you to know that i know in the end it WILL work out and get approved...but the process IS hard and NO fun! so, i am sending you hugs.

let us know when you hear!

emily

[Guest Julia59]

I'm sorry you are having such a rough time with your disability. It's hard enough to make that decision, and then to have to re-hash everything over and over again. I just get plain tired of discussing my situation-----it make me feel so exposed.

The discussion forum is the only place I feel I can vent about stuff like this. My SSDI was just filed recently and it was a very difficult decision. I guess all this stuff going on with my neck-chiari problems pushed me over the edge. The chiari in itself is not so much a problem as is the stenosis/and instability of my upper neck. I couldn't imagine going back to work even part time with all this mess righ now.

I was told that going back to work on a trial basis should be done AFTER the SSDI is approved. They give you a trial period in which they allow you to work---and if it doesn't work out you don't lose any benefits. That is one of the first questions I asked.

Like Emily said---things will work out for you. I think this is just a short set back. It sounds like the judge is on your side---and believes you are disabled enough to not work right now. Hang in there............

Julie :0)

[ethansmom]

It really doesn't seem fair that you would try so hard to work, and be punished for that. What do they expect us to do? You have more than earned this...but don't give up- obviously you are still plugging away to get it finished. Perserverance can be a wonderful thing.

I think it's great that you've contacted a chronic illness counselor- I imagine and hope that this will be helpful to you as well. Hang in there!

[geneva]

Tearose, I got mad just reading your post. As said before, if the judge could just walk in your shoes for ONE day or even just be in your home one day he would know that neither you nor anyone else would ever want to live like this. I think it is good to let your anger out. Sometimes we try to hard to be agreeable and in this case you have every reason to be upset.

I think if you find a good person skilled in working with chronic illness it is a blessing. Our families try so hard but they can't be all we need. I wish I had someone like this as part of my support team but unfortunately I live an hour away from the city. Congratulations to you for using your anger and frustration to make something positive come from today.

[corina]

When I was not approved for disability the first time, they told me I could work as a POSTMAN. In the netherlands that means you get on your bike with all the post and packages and walk for 8 hours a day delivering the mail, for 40 hours a week. I just couldn't believe it, I couldn't even walk for more than 10 meters! In the netherlands you get disability from a specialized insurance company. When I told them I would go to court and take all my doctors with me (because they all agreed I REALLY couldn't work anymore and they even wanted to go to court with me) I got approved. It was a victory with a smile and a lot of tears, 'cause like all of us, I really would like to go out and work. So try and keep your head up, dry the tears and go for it, you deserve it.

Corina

[Guest tearose]

Thank you for your support! I hope you can follow this next step...Things came to a real peak and I'm glad I reached out. I know a new period of hard work and growth is before me. I decided now, not to see the psychologist but to continue to work on putting myself back together in my own way, in my own time. Remember I said I couldn't figure why it is so hard to see the psychologist...last night it came to me that they are called "doctors" and part of my serious difficulty is in dealing with doctors! Those who I went to ask for help when I was so weak, ill and vulnerable...doctors who said "maybe you need to use a treadmill" or "maybe you could try working less hours"....because I pushed then (because they insisted I wasn't ill) I may not get the disability insurance benefits I need today! I equate my disability insurance difficulty to trying to appease those horrible doctors. I can't now turn back and go to "one of them" for support!!! Maybe it is an over reaction, but right now I feel like I need to protect my "soft spots" which are all exposed. Working it out this way feels like the right way...in this moment...ugh! Have I worn you out? Thanks for listening, tearose

[corina]

Tearose,

if this is what's making you feel strong, then go for it! Good luck on your decision,

take it one step at a time,

Corina

[Guest Mary from OH]

Tearose,

I feel your pain, on so many levels. I hesitate to admit this... especially here. But I worked for BDD (the Bureau of Disability Determination). I did not work there a long time. I am a trained Psychologist and not a very good bureaucrat!! It was too much stress for me and I disagreed with too much. Plus, my supervisor and I did NOT get along and she made life **** for me!! She had a HS education and resented my advanced degrees and took it out on me personally. She was able to advance in the system because she had been there her whole life. Someone in her shoes now, would never be hired. On one level, I understood the need for BDD to be very strict and clear about guidelines for illnesses and diseases; however the problem was that not every illness or person's total picture was covered. I would find that I would have cases where a person was totally incapaciated IMO and I could not "help" them IMO because they could not MEET or EQUAL quidelines. That is the key. You have to MEET or EQUAL quidelines. And the additional problem that most of us have is that we have our age going against us. Most of us are fairly young. Therefore would have what's called (if I remember my terminology) a vocational allowance/denial, because we would be considered to be able to do sedantary work automatically because of our young age. It's a vicious circle. I used to get SO angry. There are very specific tests they need in order to qualify you. Many times the easiest way to qualify someone who doesn't MEET a typical medical diagnosis like ours is to gather all the other evidence and then they end up qualifying under meeting a psych diagnosis such as an anxiety disorder or depressive disorder. It seems stupid to me and I think they need to expand some of their disorders.... but I don't think it will happen anytime in the near future.

My best advice is to always send in copies of ALL tests you've had WHEN you apply!!! That way they have less letters to send to drs for tests, etc. This is what slows the process down.

Tearose - I applaud you for seeking out professional help!! EVERYONE needs someone unbiased to DUMP on!!!!!

If for some reason you don't win with this judge, APPEAL!!! Don't give up!!! I promise I will support you and help you in any way I can!!!! I hope my rambling has helped and made some sense....

{{{{{{{{Tearose}}}}}}}}}}