Labyrinth of Records Collections

Warning:  VERY ANGRY RANT to follow but also some semi-useful info for LTD applications at the end of the post (in case you want to skip the rant part)

This past month I've been busy putting together my insurance case.  My LTD is up for its two year review and I have to prove that I can't work in ANY occupation.  The form the insurance company sent looks innocuous enough.  Four pages of questions for my primary doctor and five for me.  Questions like: what meds are you on; what are your symptoms; can you work; etc.  I was fooled by this form the first time.  I answered all the questions in the spaces provided in short succinct fashion.  And got summarily rejected.  I was told that I made everything up.  I had no proof that I was ill.  This was a week before Christmas.  I HATE them!

My appeal cost me over 10K in lawyers fees alone.  Never mind copying and mailing costs and the sheer amount of time I spent putting the case together.  This time I knew better.  I have to mount my case from the start.  Maybe, just maybe I can avoid the lawyer this time around.

Thus, I entered into the Labyrinth of Records Collections.  At the entrance to the maze I had two goals: 1) to obtain letters from each of my providers stating that I did indeed have CFS and that there was no way that I could work and 2) obtain my medical records from each provider and hospital that I had visited during the last three years.

Now I have to mention that I got the letter from LTD Insurance Co. during the first week of August, which, in this country at least, is prime vacation month.  If it wasn't the doctors themselves that were out of town, then their staff were enjoying the beach and cocktails somewhere nice that didn't involve panicked patients and insurance companies.

Add to this mess the fact that I have fairly severe CFS and can only work on this one maybe two hours a day on a good day.  AND, the fact that I ended up in the ER with yet another UTI in the middle of the month.  Put it this way: I was SHOCKED that I got the bulk of the work done and met their deadline of August 31st.

So there I stood at the entrance of the maze on a quest for letters and records from people that were on vacation so that I could put together a 386 page packet of information so that I could prove I couldn't work and keep my disability benefits so I could keep a roof over my head.  Yeah, that.  Eating and living in a house.  That.

First I put together packets for the doctors.  I included their affidavits from my original claim appeal and a short letter describing the information that I wanted in the letter and the list of the diagnosis from my original claim.  I gave four doctors two weeks to write said letters and I gave the form to my primary.  Let the race begin.  Not a single doctor made the deadline.  The first one to produce anything was my shrink who was a day late.  The second was my chiropractor who was two days late.  My primary was out of town so the simple form was three days late.  My world famous CFS doc's letter came after my deadline passed and I had already mailed the packet off to LTD Ins. Co.  And my treating CFS doc never produced a letter at all.  Thanks guys!  At least the ones that did respond all said I couldn't work at all.  Woot!  And they had the correct diagnoses on them.

The only problem is the world famous CFS doc included the old CDC exclusion for obesity.  (They used to claim that fat people couldn't get CFS.  *insert rude noise here*)  This exclusion was removed per CFSAC request at least a year ago because the insurance companies were using it to refuse coverage to fat people for CFS.   Well, DUH!  So now I have to write back to world famous CFS doc and thank him for his letter but could you please edit it and remove the old CDC exclusion and then I get to wait another several weeks for the rewrite.  In the meantime, I'll bug treating CFS doc for his letter.

Next: get my medical records.  HAH!  This game starts with looking up all the contact information on the facilities' websites.  Downloading forms.  Getting the correct addresses.  Writing cover letters.  And mailing packets out to ten different institutions requesting my records.  These were often also chased with faxing the forms multiple times and making phone calls to voicemail recorders where I never heard from anyone.  So many phone calls, faxes and letters later I only have my entire set of records from my primary doc.  And this is mostly because I accumulated this as I went to see him so only needed a few missing visits and tests and I'm buddies with the office manager.  I manage to get my set of records from my treating CFS doc's office only after I called my doc's secretary several times in a row after she kept trying to dump me into the voicemail system of the records department.  This is a department that I had sent two faxes to and left daily voicemail for a week with no return phone calls.  The girl felt so guilty that I had been trying to get my records for three weeks she didn't charge me for the copies.  Small win.  The only other records I got prior to the packet deadline were my SIBO test results.

Once Labor Day came and went, now records are starting to show up, orthopedics and dermatology.  Today I got a letter from the hospital where I went for my UTIs.  They didn't want to send me my records because they didn't have the appropriate information.  They included my original letter and a form for me to fill out.  Now this was a facility that I went to their website and followed their directions.  I wrote a letter that included why I wanted the records, who they were being sent to and the dates of service.  Guess what the form asked for?  Go on!  Guess!  Why I wanted the records, who they were being sent to and the dates of service!!!  Wholly f'ing s**t guys!!!  What the f is wrong with you!?!?!  I need my f'ing records!!!  TWO WEEKS AGO!!!!  Why the f didn't you put the f'ing form on the website for download like other hospitals!?!?!?!?  Why did you make me write a letter with the EXACT same info you want in the form!!!  Good God!  Thank goodness you don't have to put a satellite up in space.  You'd miss the damn rocket launch!  TWO WEEKS late and you are only now asking me to fill out a form.  Holy mother of God!

And don't get me started on the three other facilities that haven't bothered to send me my records at all....

It is only my HOUSE on the line here FOLKS!!  Only my ability to feed, clothe and keep my family warm that we are talking about!!  I want to curse at the top of my lungs!  I don't have enough curse words to express my exasperation with these idiots and nincompoops!

So I have my to-do list for Monday.  I have to request a new letter from my world famous CFS doctor because he hasn't bothered to keep up with the CDC definition of CFS.  I have to fill in my form for the hospital and write a cover letter suggesting that they put the F'ING FORM on their website as a pdf for download.  And then I get to make phone calls asking where the heck my missing files are.  What fun.

I'm almost at the center of the Labyrinth.  If I jump high enough I can see the path.  I have no idea if I'll make it out no matter how high and how hard I jump.  If people don't choose to cooperate, then maybe I'll just have to sic a lawyer on their asses.  If it does come to that, I have NO sympathy for them.  I'm not asking for much and my ability to feed and house my family is at stake.  They are supposed to at least supply my records to me: it is a legal thing.  The letters they can give me the runaround on.  I'm hoping that I hear something soon from LTD Ins. Co. before I spend too much time chasing the malingerers down.

And by the way LTD Ins. Co., I hope you choke on the 386 pages I sent you (with more to come).  That is revenge for denying me coverage the first time around.  Asshats!

Now that I've sort of got my rant out of my system here is the list of documents that I included in the packet to prove that I can't work:

• List of providers with contact info
• List of meds and supplements currently taking
• List of meds tried but had to quit due to side effects or ineffectiveness
• List of symptoms (I make these every time I see a doc so I had a stack of them covering 3yrs)
• Daily journal of symptoms and activities (this is also submissible to SSA for disability) I only had a couple of weeks of this.  I'm really bad at keeping a daily journal because I forget about it constantly.
• Detailed list of daily activities (good, bad and severe days + average number of each type of days per week)
• Detailed list of capabilities including: lifting, bending, reaching, memory, cognition, walking, sitting, lying down, carrying a conversation in person and on the phone, writing, reading, fall risk, puzzle solving, following directions, etc  Any skill that you need to perform work.  Again I split this up into good, bad and severe days.
• Detailed job description (no one has a clue what I do from my job title)
• List of last five jobs (to show what type of jobs I've held: all technical in my case)
• Detailed list of all training received to perform job (in my case this includes education, safety training, Toastmasters, specialized software, engineering classes, basically everything I could think of)
• Detailed list of why I can't work (this is a melding of capabilities list and job description list)
• Letters from docs with diagnosis, statement of work capability and variability of illness
• Clinical notes (medical records of every visit and test I've had done since the last packet I sent them: don't leave ANYTHING out or they think you are hiding something.  I know this from experience)