Laura's Disability Journal
Laura's Disability Journal
After seeing my Rheumatologist on Tuesday, I bravely hobbled with cane
to the Human Resources Dept. yesterday. The woman in charge was very
sweet - I'm fortunate there, because I have scanned her and her mother.
She likes me. :)
I got a whole packet of papers to fill out, and the news that I will
have to get copies of *all* of my medical records pertaining to SLE. I
called my Rheumatologist's PA, and he weighed my chart..... 2.25
POUNDS!!! Turns out I have to pay by the page to get copies. Oh joy. ;)
Everyone keeps saying I will get turned down the first time. Meanwhile,
I'm on FMLA for 6 more weeks, then 2 mos. with NO pay (plus I'll have to
Cobra), and *then* I'll be eligible for my corporation's long term
I haven't even started on the Government's part yet.... Right now,
there's a fire in my fireplace, my bird Bubba is snoozing on my
shoulder, and there's about 3-5 inches of snow outside! In Tennessee,
this is very rare, and, for the first time in 23 years.... I'm not on
My first silver lining. I sure hope I remember it when the paper trail
gets too thick for human consumption....... &lT;BG&gT;
That's all for now, but I reckon there will be plenty more to come.
Today is not so good. I miss my friends at work, and I feel like I've
jumped off a huge cliff with no net or water beneath to break my fall. I
realized today that I will never be a be able to do MRI again.... after
Family is being very supportive, but I can already tell this will be up
and down on the emotional scale.
I'm a little freaked out, but still glad I made the decision. This
weekend is my &quoT;read the paperwork&quoT; weekend.
I still have to have knee surgery next week, and no one (family/doctors)
wants me to file until that is completed.
Not sure what's coming here, but I know I'll get through it, 'cause I
*have* to! :)
Well, today was mighty interesting - I actually got some things done
around the house, and even did some mending! All done very slowly, but
these are things I could not do before since my energy had to be saved
And *then* after this lovely day... I burst into tears because I knew I
could never go back to work again. &lT;shakes head&gT;
I had to call my Mama. &lT;BG&gT; She says I'm teary like this every
it's close to my Remicade infusion, which is tomorrow. I'm on 10mg/kg
right now, 20 of meth, and 10 of pred. I sure hope the lack of work
stress enables me to cut back on these.
My infusion nurse is going to go over the paperwork with me tomorrow -
she really knows her way around disability, and I'm hoping she can give
me some pointers. :)
Well, chemo day was just delightful. Thank God I have a wonderful
infusion nurse. My veins are so bad now that I am scheduled for a
port-a-cath next Thursday.
I saw the Orthopedist today and found out I have to have both knees
scoped. One at a time 'cause I can't use crutches due to crummy
I called Vanderbilt and asked for a copy of my chart today. My chart
weighs over 2 pounds. &lT;BG&gT; Melissa, who likes me, was very sweet
and I was very apologetic.
And so it truly begins.
It's actually the wee hours of Saturday morning, but all this "stuff" happened on Friday.
Today I spent almost 6 hours on the phone trying to dig my way through chains of command.
Thank goodness I have a cell phone - even switching phones and hands was not enough, my fingers were so cramped I couldn't type this until tonight.
Every single doctor and hospital has been called. Every single one of them &lT;them being the actual people I needed, not the 3-5 people I had to go through first> promises me that I will have my charts copied by next week. I'm trying very, *very* hard to believe them. It's odd how different places charge so differently for this service. My biggest chart is at Vanderbilt University Medical Center. Getting those copies won't cost me a penny, although I do have to come down and pick them up myself from Melissa the Marvelous. My other Rheum's nurse - Whom shall heretofore be known as Elaine the Amazing, will have my complete chart copied and ready for me to pick up next Wednesday, when I go for my port pre-op. She also charged nothing. Dr. Bailey said that all his notes on me are in my Skyline chart, but he's not positive, so Mighty Marcella is going is going to copy that chart for me, and I will pick
that up the week I have my Right knee scoped. I can't get the records from poor Dr McLaughlin, 'cause he hasn't done anything exciting enough to write down. He's the guy who scopes my right knee week after next. He wasn't going to xray or do an MRI on me, since my clinical symptoms were telling enough to validate arthroscopy. Then, he changed his mind, due to the upcoming disability battle. So he did one set of weight bearing knees in his office and wrote me a scrip for bilateral MRI knees. My bilateral weight bearing knee x-ray showed early mild bone deformity.
Of course I got registered in the computer, then caught one of the MRI techs going to lunch and made her scan both my knees. She said " This would be a lot more fun if you had offered to cook me dinner one night, but you're a terrible cook, so I guess I must actually like you." &lT;BG> I looked at the scan, both knees are moderately trashed, probably weakened synovium, either way, Right knee arthroscope here I come! Don't whine lefty - you'll get your turn. &lT;g>
And then comes the Skyline chart &lT;ominous drum roll>. They want *15* dollars for the first five pages, then .75 for each page after up to 100, which gets you the great bargain of .50 per page. Luckily, my chart at Skyline is only around 125 pages.
My ultimate goal is to have every paper ready and waiting for McLaughlin's input by the end of next week. My brother had a neat idea that y'all probably already know. He's a Federal Agent, so he spends more time than he would like working up case reports. He puts the papers in order, goes to Kinko's and has them bound at a very
reasonable rate. I plan to have one bound megachart for my Co. long term disability, one for the government, and one for me. My brother says "Bury them with paper." I sure hope he's right! Otherwise I'm gonna read Naughty Bedtime stories to my future nieces and nephews - they'll all be stories about *him* of course. LOL!
I'm feeling really good right now, since I've got 10mg/kg of Remicade up and cranking, but I was totally exhausted by 3pm today, and I had used up all my polite phone manners.
Then my Mama, middle sissy, baby sissy, baby bro, sainted sis-in-law, SSIL's Mama, Patti, who is so wonderful I always introduce her as my mother-in-law, and best friends 1 through 4 all called in a row and wanted to know all about it. Thank goodness I finally stopped the madness by begging my Dad &lT;he was on the extension> to *please* make them stop!!! He's good at that. :)
Then I had a good cry just because I wanted to. :) :) :)
I'm beginning to believe that wading through the perilous waters of disability is a *lot* like PMS..... I went into full Menopause when I was 30 &lT;a Lupus thing>, and I did *not* miss PMS one whit! I'm glad I have a nice calm Psychologist to help me cope. :-)
Thank you to those of you who have sent support emails, I really appreciate it, and it certainly brightens my day. Plus, I'm open to any and all questions and suggestions, tips, voodoo rituals..... &lT;G>
Turns out getting copies of my charts is more difficult that I was told. :P
Today I have to go downtown for preop (I'm having a port put in tomorrow).
While I'm downtown, I have to pick up my chart from Elaine the Amazing, but it turns out that, for Vanderbilt, I have to go in person and sign a piece of paper and *then* they'll begin to copy my chart. (shakes head)
Hopefully VUMC won't take *too* long -they're my most important chart.
Next week I collect my Skyline chart (the one I have to pay for), and, 2 days after that I have knee surgery.
I was hoping I could get all the paperwork together before the knee surgery (just an arthroscope), but it looks like I'll be doing some extra hobbling. (G)
I found out today that, even though my FMLA runs out in about 3 weeks, I can then take General Medical Leave. This means that, even though I'll have to pay for my medical benefits, I won't have to Cobra! Since I only get 18 months of Cobra, I'm pretty excited about this. General Medical leave can float me for 6 months, which gives me a really good chunk of added time to convince the Feds to put me on Medicare, or whatever permutation of that I'll have to use.
I'm a little tired of talking on the phone, but it's all worth it. My favorite Rheum said "Just go at it like a Pit bull". That's my strategy so far. :)
I've come up with a new term for the pursuit of Disability. 'The Dwaiting Game'. LOL!
For every piece of paper I fill out, look up, collect from different places and hand carry to other places....
I swear 10 more sheets appear.
So now I wait. I wait till next week to get my Skyline chart and letters from the Orthopedist stating that both knees are damaged and will have to be repaired one at a time. (with op charts to follow)
And, while I'm waiting, let me just say..... PORTACATHS HURT! Sorry for yelling, but it's a different kind of pain than I'm used to and it really caught me by surprise. I shrugged off the vascular surgeon's offer of pain medicine, and ended up whining to my gp for some about 2 hours after I got home and the local wore off. (g) Luckily my Mama was still at my house and able to go to the pharmacy for me since I'd had too many good drugs (supposedly) to drive to the pharmacy myself. They gave me Lortab, and it did help. I'm a real wuss about pain meds - I'm always afraid that, if I get used to one, and I really *need* that one later, I'll be so tolerant it won't help.
Normally I stick to large amounts of Tylenol, but this needed more.
No crying today, though - I found some needlepoint in my sewing chest that I haven't worked on since my fingers started to curl. Now, if I stitch slowly, I can needlepoint again thanks to Remicade. :) :) :) :)
And (drum roll) ........ Today I get to have a shower!!!!! laura does the happy dance. :) :) :)
The charts are not all here and compiled yet, folks, so if you have *any* .02 you'd like to add, please give me a nickel's worth. :)
And the Dwaiting Game continues. Today I found out why my portacath
hurts like the dickens. It was bandaged improperly. In order for the
surgeon to fix the bandage he had to *rip* a big piece of skin off. I'm
now on antibiotics, my knee surgeries are on hold, and some really
unlucky nurse probably got chewed a new one by the surgeon.
And have I seen a SINGLE chart?!?!?!? Well, yes, from Elaine the
Amazing. :) But otherwise, nada.
Looks liked I'll be hobbling to Skyline for my "gourmet" chart (the one
that costs big bucks) tomorrow. OTOH, there is a chance of snow and I
do have enough food.... Snow day????? I'm looking forward to it. (BG)
The orthopedist is just going to have to write a letter saying I need
the surgery and will be having it soon, otherwise, he won't make it into
the monster chart.
I called Vanderbilt, but they have to mail my chart to me. Logic girl
asks: "Why did I have to come down in person to sign for its release if
I can't come down in person and pick it up?"
Logic girl learns there *is* no logic in a big hospital. (shakes head)
I thought I would be worried about downtime, but guess what? There *is*
a life out there!! Slow needlepoint, teaching the bird to talk (he can
now say "Watcha doin?") and I have friends coming to visit right and
left. Men take out trash and replace lightbulbs, women help me
organize. My DVDs are now alphabetical and we're all having a lot of
fun. When my cheeks get the red spots, everyone leaves. :)
But I want my *charts*!!!!!! Now!!!!!!
My Vanderbilt chart came!!!! I'm jumping.... ok..... hobbling really
fast - for joy!
Now all I have to do is pick up my expensive chart at Skyline, and I
should be able to apply.
I talked to Human Resources today and she says I have till Feb. 27 on
FMLA. After that I have to go on General Medical leave, which is still
OK. My job *says* that, if I'm out of work for five months, and have
the medical documentation to prove it, I will receive Tristar
disability. I will have to Cobra, but not till after the General
medical leave, which is 6 mos.
This sounds not quite right to me, so I suspect that I will have to
Cobra the second Tristar kicks in. That's still OK by me.
All in all, a happy day!
Well surprise - the Vanderbilt charts costs as well. We're
talking about 300$ here. Unfortunately for them, they enclosed the bill
with the chart, so they will just have to get in line.
Still -progress is being made! :)
My monitor is fading. Depending on the fates, I may be able to keep the
journal current, or I may be off-line a few weeks.
Well, as things can happen in our world...... things have happened.
Turns out I have some rare *interesting* lupus
thing that requires major abdominal surgery next week. Thank God I'm
too old to wear bikinis any more.
I almost have the whole chart, and my brother is going to help me get it
bound next week, since I'll only have 4 working days till surgery, I
really want to hit the ground gimping and get this paperwork cooking.
Before I became a math major at Vanderbilt, my major was Medieval
Literature..... I had an entire semester of Shakespeare, he was so
boring to me that I barely made an A.
I leave this email with a butchered version of The Bard.
And though thou fight with greatest skill,
Thy enemy of old,
Shall wrack thy body with grievous pain,
And once again,
Thy tired and broken body shall rise up,
And fight the fight again.
Yesterday I had my pre-op done at Skyline, and was able to get my chart copied while waiting for all the pre-op tests.
It only cost around $80 bucks, so that's doable.
Plus, my Mama went with me and we caught up on *all* my bills while we were waiting.
Today I typed up my Durable Power of Attorney, my Medical Power of Attorney, My Living Will, and my Will.
So, all in all, it's been a very productive day.
Starting Thursday, the 20th, I'll be out of pocket "and in ICU" for a while, but I'll be back asap.
This will be the last update for a while, as I go in for surgery
The bad news - I hate being on clear liquids for a week, *and* I had to
drink that gallon of "go go" juice. (triple ick!!!)
The good news - hopefully, this operation will clear up some major probs
I've been having, and, while Mama and I slowly wound our way through the
pre-op routine Monday, we managed to get the Skyline Chart!!! It only
cost 81 bucks, not nearly as bad as I thought it would be. We also had
enough time to get all my bills paid ahead in case I'm in the hospital
for several weeks. I don't *expect* to be there that long, but, because
of my dear friend SLE, things don't always go as expected.
Now Mama has all the disability paperwork, my brother's going to help
her get it bound while I'm in surgery, and, while I'm recuperating
upstairs, middle sissy will hand deliver to Carol at Human Resources.
Things are going very well, although I might actually kill for a bite of
steak right now. :)
See you again when they set me free!