HI Bob and Mel,
Thanks for the encouragment. I truly feel like I've been hit by a mack truck! I'm just totally wiped out and ache all over. I had the infusion on Wed. afternoon so I'm hoping these symptoms go away soon. Two and a half days of this is about all I can handle!

Just to be sure, I'd check with the infusion people (nurses, docs, staff, etc- maybe even talk to any other patients who are there for the same type infusions) to be sure. It may be you are having a more negative reaction s/e than is customary. Double-check. Redundancy never hurts.

Hi Roxie,

I applied for SSI in November 27, 2006 and was approved in Feb of 2007. This disease is on the list which you can get on the Social Security web site. I did my application on -line and brought all my paperwork to the local office. I didn't have to wait 2 years nor did I have to have any other testing done by the SSI office. I did however have all of my doctors visits and test result copied so that I had all the information on hand when I applied. I'm not sure why you wouldn't also just apply for FMLA leave at the school. This also allows for up to 13 weeks of time off or you may use days or partial days as needed. You can check with you HR director at the school. Good luck and I do agree no one understands this disease so its very hard to make them understand just how painful it it.

Hi Kemmy,
Do you have other issues beside Neuropathy? is it Neuropathy related to Diabetes? I don't have Diabetes. My Neuropathy is Chroinc Axonal Neuropathy. I have copies of all my tests thus far. I hope I don't have a long wait and fight for ssi.
I have used 6 weeks of my FMLA. When school starts on the 20th then my pay starts over for the year and then my pay will be 0.......and I won't have money to pay for my insurance premium. So I have to go back to work so I can pay for my insurance. (like so many discussed in the Sicko movie)
My husband and I have a meeting on Monday with my Principal to see if I can work part time for a while.....as my dr. recommended.

what all you say to the principal - more importantly.....Did your doctor give you a letter or note stating that you MUST work on a limited schedule?
Do NOT just give that letter to the principal - be sure you have more than one copy for your own files and uses....
If you can at least work part time with some flexible hours while this all being sorted out that would be good.
As for giving them a copy of medical explanations on your condition[s] Do not do that - any and all elaboration of your medical condition should be from your doc[s] to the HR reps for your school system. Let THEM do the looking!
Copying off explanations and giving them to family and friends is one thing...as they have to know and understand you are living with a CHRONIC condition. Employers will 'let you go' quick as a bunny if they REALLY understood - get my drift?
Hopefully you are near a large metro area that has attorneys who specialize in dealing with this all...one who can outline your options and any time restraints/constraints there could be in terms of the laws...
There is a LOT of paper, medical reports, diagnoses etc that go with this all.
Some docs charge for copies, others do not [I've found I can get copies of my records-I ask for them at least every year - and then fill in the blanks of the other doc records as needed - it's much cheaper that way] Some medical offices can charge $5. a page for the 'labor' and 'handling' to get you your copies...
I just think that talking to a lawyer about your options, well, it could be cheaper in the long run to know what info you need to get, and what it all could cost...I sure wish I could be of more help tho!

HI J,
Yes my dr. wrote a letter for me saying he wants me to work part time for now. I'll be sure to have copies of it and not give out my original. We won't be telling him any info we don't have to give. I'll let the district notify my dr. if they want more info.
We talked to an atty the other day on the phone and he gave us a lot of good pointers and tips. I'm not looking forward to the meeting on Monday......my Principal can be an *****.

That you are doing both!
As for the principal being a particular type of animal? Well You have to admit it comes with their job? Good that your husband's going with you tho....
I never go to any doc appointment or other legal things [a friend has had some problems] w/o a steno pad and 3 working pens! That I write down all that's being covererd, well, no wool is being pulled!
With some folks, that gains respect, with others fear - depends on how they plan to 'play games' or get things done. Me? I find that it's always good to have a back-up set of ears+brains in important situations....this will be one. Just be your nice, factual assertive self. Never lie, nor volunteer facts. BUT always be truthful so you dont get caught up at a later date.
Now don't fret, rest, and keep your feet dry? Or, better yet, send some of that wet up here? No water rationing/restrictions yet.....
Take care - j

While I am not familiar with your employment history and financial situation, I seriously doubt that you would qualify for SSI. You, perhaps, might qualify for SSD. These two get mixed up all the time.

If you switch to half-time employment, that is likely to bring in too much income for you to qualify for SSD. What most folks don't realize is that the determination is made based not on what work you do, but on how much income. For most people, they have to either not be working at all or only very little in order to qualify.

I really wanted to let you know so that you do not get your hopes up, especially if based on the wrong things. Of course you do know your situation better than I . . . also, if you want to PM me, I can give you more info.

I performed evaluations for SSD/SSI for many years. I have a lot of knowledge, inside info, contacts, etc, etc. I also successfully negotiated my own SSD case, without having to appear before an ALJ (Administrative Law Judge).

rafi

Roxie, you have brought up a very interesting quandary that many of us face. The legalities are very important and you do have to be careful, but there is also another side fo the story, and that is the emotional suffering many of us endure in this type of situation. Before I became ill and was a practicing physical therapist, I noticed problems that many of my patients had: often their supervisors, or their child's teacher or principal, or anyone in authority -- instead of reacting with compassion to their situation, would react with downright meaness, a reaction that never failed to shock me. Often these were people that were considered "good people", church people, well thought of in the community. But when asked to make concessions for someone with a disability -- even a child -- would be unbelievably cruel. Then when I became ill, I experienced it myself. I had always been an excellent employee and had gotten outstanding annual reviews, but when I asked for a transfer to a position that required me to be on my feet less my supervisor (who was post-polio and received special consideration herself!) reacted visciously. I had to get a lawyer to accomplish this simple transfer. I have seen a principal of a school fight to keep a beautiful, smart, charming little girl out of his school just because she was on crutches (before there were laws about this). I have just never figured out where this comes from. I have heard explanations that these people are afraid, or feel threatened by anyone who isn't totally healthy, or whatever, but I can't see why that would make people be so awful. So, in addition to the pain and disability, we must sometimes endure unexpected cruelty. It was so demoralizing to me. Even my neurologist, who knew I was experiencing pain so severe that I was suicidal, told me that I would never get SSD because "even people in wheelchairs can work", and that I was better off than that. I was so depressed for so long that I never even tried to get SSD, and am past the time limit now. All of this is just to say that I hope you protect yourself emotionally as well as legally. Be prepared that your principal may not be supportive, and don't let it cause you emotional pain. There is just something perverse in some people. When we are down, it hurts to be kicked.

Dakota: You said: " I have seen a principal of a school fight to keep a beautiful, smart, charming little girl out of his school just because she was on crutches"

Oh, I've seen many people react to people with disabilities in that way. I never understood their reactions or why they felt that way, UNTIL, my friend who is 64 years old, once told me "I can't watch Christopher Reeve on tv, I won't do that to myself". Well, after I picked myself off of the floor, I asked her "why on earth can't you watch a wonderful man who has gone on with his life, his wonderful family, who helps people with spinal disorders, why can't you watch him on tv, what does it have anything to do with you"???

She was quiet and said "I am too sensitive, it gets to me, I don't want stuff to get to me". Then she told me she can't watch any of the stuff on the Disovery Heath channel (where they have dwarfs, giants, people who are disfigured, etc. etc.) because she just can't stand it. She needs perfection around her.

This is the same woman who knows exactly where everything is in her drawers, the socks face a certain way, (she's extremely OCD). As a matter of fact, I found out yesterday that in all her 64 years on this earth, she has never let the shower water go on her face. She cannot wash her hair in the shower. She'll have a panic attack because she thinks she's drowning. She's been washing her hair in the kitchen sink all her life.

So I gather that people like this can't stand things out of their comfort zone. They limit themselves to only see perfection, have things in straight lines, are very stubborn in their approach to life. I can't tell this woman anything. She knows everything. Now sometimes she's right, but not every time.

People like that lack a kind of empathy. They live in their own bubble of their comfort and to say that "I can't watch Christoper Reeve on TV". is the same as saying "I can't watch anybody with a disability, it upsets me".

My answer to her was: "you have to grow up". She's 64 tomorrow. Don't think she's about to change in her thinking.

If we are brought up to think a certain way, well it's very hard to change.

And it absolutely hate principals who can't see other people's viewpoints. Isn't this how we grow and learn in life??? I'm still growing and I'm still learning, and I hope to do so until I leave this planet.

I've learned, that when someone says something hurtful, inappropriate or downright mean to me, well I just look them in the face and say "now why on earth would you say such a thing to me". It works every time. They just stand there with their stupid mouths open. They really don't think before they speak. And I've never been one to idly stand by when someone says an inappropriate thing to another human. I just gently chide that person and say "how would you feel if that were said to you?"

We have to stand up for one another.

Melody