So I am filling out what should be my LAST daily activities questionaire. And I am stuck. Like most people, I do not perform the same activities daily. And like most people with MS, each day could be very different. I have days when I sleep all day because I am exhausted, I have days where I am superwoman, and I have days that I push myself to the brink of insanity just to make it thru to bedtime.

How do I describe this on this little form that only gives me 3 little lines to answer?

It is just so frustrating that I have tried to train my brain to not think of the things I cannot do and to focus on what I CAN do, and now I have to point out to these schmucks all of the things I cannot do. This sucks.

Grrrrrrrrrrrrrrr! In a mood.

There is solace found in the fact this will be my LAST one of these and my LAST audit report and we have court in less than a month.

I will be so happy when this is over. OH, and the state has called a witness from the rehab center (that I have never been to) to refute all of my testimony about this disease and how it effects ME. I love that a stranger can tell you how something is effecting the inside of my body.

I would attach an extra sheet or two. Put in the box they gave you "see attached" and then describe a good day. get up, wash face, brush teeth, wake kids...then on the other page describe an average day. no energy to wash face, just brushed teeth and put hair in a pony rather than style it. yelled at kids to get up. Cereal for breakfast instead of something hot...Then make a bad day page. Stayed in bed, DD made me a cup of coffee, got herself cereal. she was dressed in a halloween costume, but she dressed herself and headed to the bus stop...On that little box they give you originally explain that there are 3 pages and explain that you dont have "average" or consistant days. With MS you never know each day what you are going to wake up to.

Im so happy you have an interview!

Dej, that is a most excellent idea. I believe I will do a wlkthrough of my week or maybe even a month to explain how this disease works. Talk about MS awareness! I think I will also collect letters from family and friends to state how they have seen my life change and my abilities change due to this disease, example, how they all know they cannot make plans with me in advance because i have no garantee that i will have the energy on that given day. Or how we all know I spend the week after the infusion fighting infections.

I put in thing "that on ON A GOOD DAY I did this but on a bad day.........." I left out not one bathroom trip, urine or bowel in detail (Constipation or "fudgies" And UTIs. It must have worked. I got rejected first time as I out best case scenerio. I pointed this out on second try.

They sent another form to re-evaluate me recently, I wrote I appreciated their interest in me, could they help me, I still had MS and it was getting worse. Their reply was they didn't need to see me really (of course, I'm older (Hm, hm). In 8 years that's the only time they've contacted me. I make copies of everything, they've lost my file once already. The trick is to be an unattractive potential pain I think without making them angry.

DH thinks I'm good at being a pain. (He's always telling me I'm one)(he's good at being a pain too but doesn't have MS. Co-workers and bosses and clients and lawyers tell him he's a pain all the time - his job requires it.).

[Hi leggsalot, I have been off line for awhile. Sorry to hear you are having trouble. I had one of those forms too. There is no room to write out all the information, so I used a seperate paper and stapled it to the question sheet. It is indeed all a pain. My benefits were changed without notice and with no reason. It took a lawyer to figure it out. Hope you are OK and that there is an end to your paperwork. Sometimes I don't even think they read the stuff. Ginnie

I don't remember if I had to do a good day/bad day thing. But, I got approved on my 1st appeal so the paperwork may be different.

Anyhow, on my appeal paper I wrote down everything! Like textures of clothes irritating me so much I had to just take them off - shoes are out of the question as are panty hose for work - how much I fell - needed help getting in to the shower and brushing my hair - need for naps - in ability to read well and comprehend what I read - etc., etc. When I reviewed what I wrote, I saw words that were missing, or wrong words (like their instead of there), and things like that. I left it as it was as that showed where I was cognitively at that time.

Put everything down that effects your daily living. If you can't lift a gallon of milk, write it down. If you can't climb stairs, write it down. If you can't make it more than an hour without using the bathroom, laying down, changing positions, etc., write that down.

Oh, and yeah, use a separate piece of paper. Just be sure to write the number of the question or rewrite the question so they know what you are responding to.

As for the State pulling in a witness, you may have to meet with that person prior and/or they will be at your deposition if you give one. And honestly, given your medical history, I don't see how the witness could refute your case. Talk to your lawyer about this as this is too important to just let it go.

Wishing you the best of luck!!!

Make sure you include that out of 7 days you normally have ONE good day, 4 ok days and 2 bad days. this way they can see that a bad day isnt so rare, and a good day isnt common place.

Im so proud of you!

I decided to give them my 4 different kinds of days and the avg number of these days I have each month. Spoke to lawyer today they sent MORE paperwork over. I am trying to et it dont tonight though no garantee. They are not worried about the guy from state. Good luck trying to say my back isn't broken ir say that I don't have 37 holes in my brain and spine. I have enough medical records to keep them busy reading for a year.

Plus, I am taking my mom wth me, I am having her testify to what she has witnessed as far as the way my body and mental states have been effected. The man is also writing a letter, and my PCP will be giving a sworn statement on my behalf next week.

So far so good, just really stressed right now and trying to complete this paperwork is kicking my butt. Thanks for the support you guys.

Sheesh, I'm glad I'm 65, they can't deny me that..

Spent all day writing and typing and dealing with lawyers and idiot doctors and....... I am exhausted and realized it took me all day to say what could have been summed up in two words..."it sucks", but no that would have been waaaaaaaay too easy!