Reeve Foundation Paralysis Community

Dan,

 

I think I have discovered a new form of therapy.  After my week of trying to manage an unmanageable health care system, I thought I needed something. 

 

We have a broken hospital bed currently being held up by a car jack awaiting repair…who knows how long that will take.  We have a denied medication for the third year in a row that requires an appeal on our part which I know will be successful because it has for the last 2 years.  It’s just the hassle of doing it over and over again.  And finally we have a doctor’s office that had some sort of screw up and didn’t mange to have the proper blood tests ordered on the 10 tubes of blood my husband had drawn 3 weeks ago, and we are just now finding out.  Yet another set of typical weekly issues which drive me nuts.  Everyday I think that there is something very wrong with our health care system, but I just can’t envision how it can be fixed.  Maybe if a member of congress actually came to my house and slept on a bed being held up by a car jack maybe then they could pull themselves out of the quagmire that prevents them from getting anything done. 

 

So this week I found a new kind of therapy.  It’s called jigsaw puzzle therapy.  My son received a puzzle as a gift this week, so we dumped it out on the dining room table and got to work.  I have found it to be quite a relaxing activity.  There is this calming feeling of turning chaos into order.  There is a spirit of working together and actually accomplishing something and a sort of exhilaration when finding that elusive piece that completes your assigned area.  The boys and I have spent several late night hours just chatting and puzzling.  I know it seems simple, but it feels therapeutic.  When there is no chance to order your life or the health care system you find yourself in, then I highly recommend a jigsaw puzzle.  Unfortunately since my husband has no hand function that leaves him still banging his head against the brick wall.  I’m on head banging hiatus this week because the puzzle is still not complete.  

 

This puzzle is only 500 pieces so maybe if things get worse we can graduate to 1000 pieces.  But this one has a secret glow in the dark picture yet to be revealed.  Oh boy I can hardly wait.  See our progress so far. 

---

Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

*giggle*

*laugh*

*snort*

 

A car jack.  I'm sorry, but that's just plain funny!!!  That is, when its not me. :)

I like puzzles too .... now I know why!

In case you wanted a visual, here it is.  Apparently according to my husband this is a step above a car jack...who knew.  You use this after you have jacked up the car to provide more stabalization.  Just what I need, more stabalization.  I wanted to post a picture of the massive bruise I got on my arm from trying to place this contraption under the bed, but I thought maybe that was too melodramatic. 

 

The guy came out today and gathered the necessary information to see if they can get approval to fix the bed.  Wonder how long this will take?  My God, I hate this crap.  Ooops...better get back to the puzzle.

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Too bad you can't attach a photo of the bed to the request.  And a photo of your bruise!!

OK the latest is that we can’t get approval for the repair.  The bed was purchased by his private insurance which is now secondary to Medicare.  According to the DME supplier, Medicare won’t pay for repairs unless they purchased the equipment.

 

On an intellectual level this doesn't seem possible.  So if you get anything when you are 63 or 64 and then go on Medicare at 65 you are just SOL?  Most people with catastrophic injuries are on some other type of insurance (if you’re lucky) for at least 2.5 years until you become Medicare eligible.  I just don’t think this can be correct, but the truth is I don’t have the fight in me anymore.  My husband has made 20+ phone calls on this and has given up.  I have made several myself only to find unbearable frustration.

 

I’m about ready to sleep under the effen bed and hope it crushes me some night.  I can see the headlines now…Wife of quad crushed by broken hospital bed, Medicare still denies the claim for repair. 

 

I don’t think any puzzle can get me over this.  The system totally sucks but sometimes you don’t even have the energy to fight it.

---

Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Dear Trish,

I really believe that your situation would drive the Buddha into apoplexy! Actually, he would probably say something like: "when it's time to feel rage, feel rage. And when it's time to feel despair..." there was a TV anchor many years ago who developed breast cancer and she wrote one of the first illness narratives. The title of the book was "first you cry." I thought the title says everything. This is not a time to wrestle with wolves or turn lemons into lemonade or do anything you think you are supposed to do. Just find yourself in your body and be your own companion for a while, as long as you need.

Right before I started writing this, I dropped something important on the floor and it was no one home to pick it up. Then I realized I had been working too long without a break in an office that was too warm. Ignoring all of that, I began drafting this reaction and all of a sudden DragonDictate started to behave as though it never knew me and forgot how to type. I try to plow through this anyway and then I realized -- I needed care. I need to just a little bit of rest. In my case tilt my chair back, have some lemonade and go into the kitchen and have a piece of fruit. In my clan, the mantra was always "eat a little something, you'll feel better! Turns out they might have been right. I hate when that happens.

Seriously, I hope at this very moment you can care for you as much as I care for you. It doesn't have to last for weeks or even for the rest of the day, but find your breath, find your body and reclaim your life from your emotions.

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com

And one other thing. The beauty of puzzles or any other little obsessive activity is that they help you get out of your mind and focus your thinking. I can hear you saying that you are already out of your mind, but if only that were the case! What causes your suffering (besides those idiots you were dealing with) is the fact that you are living in your mind. And any respite from your mind is a good thing. That's why people do bad things like addictions and other self-destructive behaviors, just to get out of there troubled minds.

Puzzles are better. Then the good news is some people tell me they are addictive also.

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com

Bed update:  Here is the choice as best I can discern:  We pay out of pocket for the repair even though my husband has Medicare and secondary insurance through his previous employer, or we order a new bed that will likely be covered 100%.  What do you do?  We don’t really want a new bed, but that seems to be the only option to have it covered and have future repairs covered.  I’ll never understand this system.  I really am out of my mind on this one.

 

We are currently trying to get my husband’s doctor to FAX in an Rx for a new bed so when can start that process.  In the meantime, the bed is still held up by the pseudo jack.  I’m thinking about adding a few spare tires, maybe a couple of cinder blocks, and a junk yard dog to the room just for additional ambiance.  

---

Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

This makes me CRAZY.  Hubby has a perfectly good, $30,000 power chair that can be chin controlled or sip and puff, and can even have a vent tray put on it, sitting in our garage.  The fit of that one just didn't work and it gave him sores no matter what cushion as it didn't have tilt in space.  Fast forward, he has a new chair and we have been trying to donate the old chair.  Its in perfect shape, it just didn't work for him.  We know at least 2 people in DIRE need of a chair and they are in exactly the same situation.  We could GIVE them the chair for FREE but their insurance won't pay for any adapataions needed (less than $2000) or any future repairs since .... say it with me  ... "they didn't buy it".  They will buy a new chair for both of these people, but the portion they'd have to pay for a new chair is $5,000 + so they can't afford that.  Yet the insurance company could pay $2,000 to adapt this chair and not have to spend $40,000 on a new chair. 

 

I HATE THIS!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

Meanwhile, we have a "clunker" sitting in the garage that could be used.  We've tried to donate it to various charities and they have all said the same thing "thanks but no thanks" because the recipient's insurance would not cover parts or repairs in the future.  How stupid is that.  :(

I have been there several times -- where things that can be fixed don't get fixed and get replaced instead. The bigger problem is that you say you are out of your mind, but I don't believe you.  That's because if you really were out of your mind, you would be able to watch this adventure, including your mind, with great delight.  When most of us suffer, it's because we are in our minds not out of them. One of life's little paradoxes like broken beds and new beds.
I kind of like the visual of cinder blocks, junkyard dogs, quadriplegic husband and crazed wife -- would make a great movie -- 1 of those seriocomidies

---

Dan Gottlieb Ph.D.
www.DrDanGottlieb.com

Oh Dan, you might be wrong on this one  I really feel out of my mind; like I’m drowning and every time I’m about to surface for air I get pushed back down.

 

Good news….yes we can get a new bed covered 100%.  Bad news, they won’t touch the old bed…against company policy.  You could have guessed that one was coming.  So my husband leaves me this voice mail today and says “we can get a new bed, but WE have to move the other one out of my room and get rid of it.”  The WE in the sentence means “you, dear wife.”  I have no flipping idea how I am going to move his old broken bed out of that room and get rid of it.  I’m not even sure that I can physically do it.  But god knows I will have to try because that’s the way this messed up system works.  Who knows, by the time I work on hauling it out of the room I may actually need it myself.  Problem solved.

 

On top of all of that the boys stared school today, and I need to be in 3 places at once some evenings.  We’ve got driver’s ed drop off, caring for husband, and freshman parent’s orientation and that’s just tonight.  I actually made tonight’s dinner last night at midnight; my new trick to try to squeeze a few more hours out of the day.  Why wait until midnight you ask?  Well because evening nurse didn’t show up last night so my plan got pushed out later than I had planned.

 

And finally last Friday I was rear-ended.  My worst fear, another accident.  My niece and both of my kids were in the car.  I have exactly 3776 miles on my new car that now has a wrecked back end.  Yipee just another activity on my plate; get my car repaired.

 

I remember this Shakespearean quote from my high school literature class.  Life is a tale told by an idiot -- full of sound and fury, signifying nothing.  Me and Macbeth, we get it.  Do I sound pissed at life?  I think I am.  Some things, like a new hospital bed, shouldn’t be this hard.  At this point I’m just trying to survive the week.  Yep, I know my attitude sucks (you don’t have to mention it), but who cares anymore.

 

BBS:  Just so you don’t feel alone, I have a 6 year old sip-n-puff chair in my dining room.  We had to get a new one because we ordered this one in Colorado and couldn’t get any DME vendor in Indianapolis to service it.  $500 repair vs. $32,000 new chair.  You guessed it…new chair wins!

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Trish

"Life isn't about waiting for the storm to pass...it's learning to dance in the rain."

Have you considered donating the chair to Wheels for the World? Following is the URL for Joni and Friends:

http://www.joniandfriends.org/wftw_chaircorp.php

One of my physical therapists went with this organization to distribute chairs in Africa a couple of years ago.