A Wheelchair! a Wheelchair! My Kingdom for a Wheelchair!

With apologies to the Bard for the lack of iambic pentameter.

Well hubs was to tired to go into Boston on Saturday and then on Sunday I wasn't up for crowds so I was easily talked out of going to the expo.  Instead we settled for trying to go to two local stores.  So he packed me into the car and off we went.  Both were closed because, hey who would want to shop for a wheelchair on the weekend?

So today kid took me back to the place that got the highest ratings on the interwebs.  We walked in to an empty small lobby.  Three power chairs were on display on the left and two chairs and a coffee table on the right with lots of industry magazines in the rack.  I walked into the back area which had a bunch of doors to various offices, a demo or staging area and a receiving/assembly area.  I finally found an office minion and told her I wanted to buy a chair.  She looked really confused; that deer in the headlights confused.  Turns out the sales reps go to hospitals and nursing homes to sell to clients there.  They even travel to private homes. They aren't really set up for walk in customers.  There were no sales reps in the building so she took my name and number and told me that the rep for my town would call me back.  Something tells me that I'm considered small potatoes so I'm not really expecting a call back at all.  I would be shocked if I got one.

My mum is coming to visit next week so I'm going to put off chair shopping until the week after.  Unless I get a phone call.  I need to talk to someone because I don't know much about wheelchairs.  I would like one to fit me properly for a change since I can spend many hours in one if we are out for most of the day.  I do know of another place that seems more walk-in friendly so that might be my next stop but that will depend upon the sales rep.  To once again misquote the Bard, "We wait upon your grace."

40 Winks

I've posted before about sleep hacking: Free Range Sleeping
Here is the ebook I referenced: 40 Sleep Hacks: The Geek's Guide to Optimizing Sleep
And now I found this interesting article on how people slept prior to the invention of electricity.  Apparently they had a bifurcated sleep pattern with a period of several hours of waking in between.  So if you are curious read on: Your Ancestors Didn't Sleep Like You
Actually the blog in general is chock full of interesting stuff on sleep:  Slumber Wise

23 Years

http://www.gocomics.com/garfield/2013/09/20/#.Uj6gZNKsh8E

Today is my wedding anniversary.  I've been married for 23 years and known my husband for 29 years.  This is more than half of my lifetime.  Thus, I have been reflecting on our marriage for much of this week.

I came down with CFS/ME in 2010.  One of the HUGE pieces of baggage hubs brought into our relationship was his inability to deal with my getting ill.  He was a great partner until I came down with a cold.  One of our first fights after we got married was over his wanting to go out to a movie because I had a cold and was stuck in bed so I couldn't do anything with him.  I want to say insensitive but that implies cruel intent, it was more like completely clueless.  He literally saw nothing wrong with it.  I was used to being pampered when I was sick.  Talk about a huge disconnect.  He didn't even want to be in the same room with me because he didn't want to get sick himself.  It took a few years to come to a truce over this one.

In 2011, a year into my illness, our marriage was at its breaking point.  The stress of my illness was almost too much for it.  He was so angry about me being ill that a nasty mean streak came out.  I was actually making plans to leave and he desperately wanted to run away.  There was lots and lots of yelling and quite a few things got broken in the kitchen.  Occasionally he grabbed at me.  He never ever hit me but I was scared shitless.  So for my own sanity, my health and my safety, I was actively making plans to get out.

However, that summer he decided to man up and stay with me through the illness.  His attitude changed profoundly.  The mean streak didn't raise its ugly head as often.  Things calmed down.  The yelling stopped.  He found a new job which he loved and our finances stabilized.  Don't ever doubt what a strain finances can put on a marriage.

Over the last two years we have very very slowly been rebuilding our relationship.  It still isn't as good as prior to my getting ill but it is WAY better than it was two years ago.

Last night we went out and had a lovely dinner at a local seafood restaurant that we both like.  We had a nice chat about nothing in particular.  Then went for chocolate shakes on the way home.  Going for ice cream is a tradition that predates our marriage.  We capped off the evening with a science fiction movie that we both like.  Going to see movies is another.  All in all, a really pleasant evening.

I liked that the evening included some of our old traditions.  I liked the fact that we chatted.  When you don't get along with your partner, chatting is very difficult.  I use chatting as a gauge for how we are getting along.  The only thing that went slightly haywire is that instead of going out to see movies we now tend to watch them at home.  This means hubs sprawls out on the couch, gets nice and comfy and promptly falls asleep.  Tonight was no different.  I suppose I should be flattered.  It means he is relaxed and comfortable enough to fall asleep.  When he went to bed I tucked him in, kissed him on the cheek and told him I loved him.  What a difference from two years ago.

Things are shifting in the right direction.  The movement in our relationship seems glacial at times but overall there is progress.  Maybe in another year or so things will be great again.  I'm looking forward to it.

Cue Expo

In a bizarre turn of events, I ended up sitting in a sub shop reading the Boston Herald while waiting for a ride.  I haven't set foot in this shop for many many months maybe even last year.  I never EVER read the Boston Herald (a nasty little paper that is still in circulation due to its small size which makes reading it on the commuter rail easier and the fact that they have extensive sports coverage).  Anyway, I ran across an ad for the Abilities Expo in Boston this weekend.  It is free.  They have a huge exhibitors hall full of vendors selling wheelchairs.  I figure this would be a great opportunity to try a few out from different vendors.

I was so excited about it I kept talking to my son about going.  He has flatly refused to go with me and kept changing the subject because it bores him.  Husband has agreed to take me but is already complaining about parking and driving there.   I don't care.  I would love to take a look around.  I also want to see what other accesibility items are for sale.  Also one of the girls from Push Girls is going to be doing a wheelchair dance exhibition.  Woot!

This expo is traveling around the country.  Boston is the first stop.  Here is the link if you are interested.

http://www.abilitiesexpo.com/boston/index.html

Let's Roll

Both my kid and my husband complain about pushing me around in my wheelchair.  Honestly, I don't blame them.  It is a transport chair with small wheels that get stuck on every little bump and rut in the sidewalk.  And forget about thresholds!  Might as well be trying to roll me over an 8" curb.  We have to get a running start or risk getting horribly stuck in a doorway.  Also, I'm almost 270lbs so not a lightweight by any stretch of the imagination.  Since taking steroids my weight has slowly been creeping up so I'm not sure where I'm going to top out.  If I have something in my pocket or a bulky coat on, the arms grab my legs when I try to stand up and won't let go.  It is like those vids sent in to America's Funniest Videos: chair gets stuck on fat person's ass when they stand up.  *insert rude noise here*  Since the wheels are so small it takes a lot of force to roll me anywhere.  They both struggle with the slightest incline and they are both really strong guys.  So I think it is time to return the loaner and buy me a real wheelchair with normal sized wheels.

So tonight I went shopping on the internet for wheelchairs.  I found they come in a huge variety of sizes and styles.  I also discovered that it is best to go to a shop to get fitted properly for one.  There are so many adjustments on them: seat height, wheel height, seat width, tilt angle, wheel tilt, weight limits, etc.  I found that chairs that support up to 350lbs start in the $1000 price range.  The chair that I really like is over $2000.  Snots!

Turns out I should have bought the darned thing when I had Blue Cross.  They would have paid for it in full.  Now that I have Medicare they will only pay for the most basic item I need to get around the house which would be my walker which I already own.  Double snots!!

Then I checked Craigslist.  There are quite a few wheelchairs listed but most of them are power chairs.  I want a manual chair.  The people selling the chairs don't know anything about them so there are no dimensions, weight limits or even make and model listed.  I have no idea if I would fit in the darned thing or if it could carry my weight safely.  So best to go with new I think.  If I were under 250lbs this wouldn't be a problems since all chairs seem to be rated up to that amount at a minimum.  Triple snots!!!

Why, oh why did I put this off???  Oh that is right.... I thought I wouldn't need one.  I thought I would be walking on my own at this point.  I was hoping to ditch the darned thing and not need one.

Also, hubs and kid strangely don't want to talk about this.  They change the topic if I bring it up.  I think right now they use the crappy chair as an excuse to leave me in the car and if I get a nice chair that is easy to push then they have to deal with me and as my husband put it "your geriatric needs".  Not one of his finer moments.  Yup.  I'm still angry at him for that one.

Oh, and I want to get one before I go on our mini-vaca next month so wheeling me around will be easier.  I would be very happy if I never hear the phrase "you and your geriatric needs" ever again.  And I HATE being left in the car like the family dog!  Just be a nice girl and sit and wait here while the grownups run into the store and do grownup things.  *more rude noises*

This is the one I want.  I can get it in blue or purple.

The Cost of Healthcare in the US

Great vid on the stupidly high cost of healthcare in the US.

Posts and Comments

My computer has never been the same since hubs tried to use Torrent to illegally download movies.  Chrome got hijacked.  It took me two days but I managed to restore most of its functionality and get rid of all the Trojan programs but Blogger has never been the same since.  I still have problems logging in and commenting.  At least I can post again.

If I get onto another computer, I have no problem with Blogger itself.  It is definitely Chrome on this computer that is messed up and I can't get anyone from Google to help me with it.  Their help center redirects me to a user forum when I can't answer their standard multiple choice questions.  I HATE them!  A real company would help out their users!!

I'll probably migrate to Wordpress at some point.  Right now my brain is too addled to figure out new blogging software.  So I'm stuck with Blogger for now with all its quirks.

Exiting the Labyrinth

WOOT I can post again!!  I have had two very frustrating days of not being able to post in Blogger at all.  This is the first time I've managed to get in to the edit page without getting an error message.  It's a miracle!  But I digress..  I'll save my Blogger rant for another post.  I have more important things to write about today.

I'm catching glimpses of the exit of the Labyrinth of Records Collection.  I'm getting close.  I can smell it.

I got a call from my treating CFS doc's secretary and a letter is now in the mail to me.  I haven't received it yet so I have no idea of the content but it has been written.  I await its arrival with much anticipation.  I'm curious what he has to say.  I upset him greatly with my detailed symptom description.  He somehow didn't comprehend the extent of my daily living situation.  Even though I see him several times a year and he knows more about this illness than most of my providers he was still shocked at how disabled I really am and how little I can do.

I had a volley of emails with the world famous CFS doc's assistant and it turns out that due to the restrictions placed on his grant he has to follow the CDC's 2004 definition of CFS which includes the obesity exclusion even though it is dumb as shit (the exclusion/CDC not the doc or the grant).  So I don't get an edited version of his letter but I have to write a disclaimer to attach to his letter and I have to download an up to date version of the CDC's definition of CFS.  More work for me.  Yay.  NOT!

I received a bill from each of the two hospitals that haven't produced my records yet.  Yup, I have to pay for the copies before they will send them to me.  This is now five weeks past the initial contact.  I even looked up HIPAA regulations on this matter and the law states that they have to produce the records within a "reasonable" time period which is 2-3 weeks and no more than 30 days.  If the records are stored off site, then they can take up to 60 days but they have to notify you in writing that this is going to take a while.  With both hospitals, the bills were my first contact with them and those were well over the 30 day limit.  Now that I've paid them for the copies I still have no idea when my records will actually show up.

Like I said I can see the exit in the distance but I'm not quite there yet.  I'm collecting a fresh set of papers on my dining room table.  Just waiting for the stragglers before I can put together the final packet of info for the LTD Ins. Co.  Soon.  Really soon.

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)