havin ms IS a full time job!
 

Today, it's monday. I get a call from disability people wanting to know why I have not sent back the 30 page packet outlining my life yet, oh you mean the one that I got in the mail on FRIDAY?? Maybe because I just received it and I am kind of dealing with this broken back thing and hopped up on pain killers 24/7 because medicaid is still dragging their feet about approving the brace my doctor ordered back on the 12th?

Oh yeah, i need to call them and see where we stand on that. Before I can do that, I get a call from the MRI place to remind me of my appts on the 24 and 25th. They claim to not have the orders from the neuro...the ones that were faxed in on the 12th when they made their appointments to go with the ortho appt already scheduled on the 24th. So yay! I get to call the neuro again!

My ortho follow up to see how my back is healing and determine if I need surgery is on the 1st. My next Ty infusion is on the 9th. The MRIs for the neuro is to see if the TY is doing more harm than good, so I guess I need to get in there before the 9th... but they want to wait until after the follow up with ortho on the 1st.

But wait, she doesn't have another appointment to see me available until april 5th. In the mean time, the combo of pain killers, lesions, and broken back have left me completly dependent on that self cath thing, which of course has caused a uti... so i have to call the urologist to get in there so I can get an antibiotic....

And some time between now and when I go to bed tonight while in a drugged stupor, I need to fill out this 30 page packet explaining how I spend my days.

Can i just send them a copy of my cell phone bill with all of the doctors offices highlighted?

let's not forget I also have MS, so between phone calls I get to try to deal with all of the MS related issues, while trying to raise a 5 yr old, take care of the house, cook dinner, take care of the animals....

GRRRRRRRRRRRRRRRRRRRRR! I wish I could go back to work just so I could get an 8 hour break in the day!

Being disabled is not for the weak!!!!!

Kicker's right......Waaaaaaaaaaaaaaaaaaa, it all SUCKS!!! :Slip: :Bawling: :Sinking: :hissyfit: :deadhorsebeat:

so am i supposed to fill this daily activity and abilities book out for before or after I broke my back? Because that one limits everything.... and is my main disability for now.... but i originally applied for the MS issues.... ugh it's so confusing!

You said it all in that one line. :hug::hug:

Have some one do a video of what you are doing, or not able to do, and send it in in place of the big 30 page paper work and have one of them fill it out!

I agree.......it's the WORST job I've ever had!! I hate this disease!!!:(

I would gladly give you my job if I could afford to retire right now (and if I was old enough). :D

I now realize I have two full time jobs -- teaching and MS.

Leggs,
Wow you do have a lot on your plate right now. I don't know how you don't feel overwhelmed. When my to-do list is that long and complicated I get overwhelmed. I hate that feeling, so I try to prioritize, if at all possible.

I feel for you, having a young child, MS, your back problems, UTI, etc., and tons of paper work.:hug:

I'd rather scrub the bathroom floor, with a toothbrush, than do paper work. :D At least my mind is resting.

I hope you feel better soon and get rid of the UTI fast. After that I just wish you all the best.

I don't know what else to say, you leave me almost speechless with all you have to do that is so important.
{{{{HUGS}}}}

Leggs,

I just realized that my reply might have sounded unsympathetic. I am so sorry. That was not my intention at all. I guess I just focused on the sentence where you said you would rather work so you could get an 8 hour break each day.:o

You have been going through so much and you also have a 5 year old. I am completely exhausted after just spending one week with my four year old niece. It takes me a month to recover.

Hang in there! I hope your application for disability is approved soon.:hug: