Tuesday, August 7, 2012

Dear Medical Community Phone People- Please See Diagnosis: 850.9

Anyone who has been through the process of an accident or medical issue, knows the annoyance of having to deal with insurance companies, lawyers, doctors offices, etc.  The multiple phone calls, run around, etc.  Yeah yeah, they do that to everyone, don't take it personal, etc.

As much as I can admit that this is the case, it doesn't make it any less annoying getting the run around.  As hard as this can be for anyone to deal with, its significantly problematic for those of us with a brain injury. 

When I have to make such a phone call, the anxiety alarm bells are already going off.  Call me rigid, (and yes more so since my head injury), but when I finally have insurance, I expect that I should no longer have to deal with the hassles of begging to get something paid for.  So the fact that I have to make a phone call to begin with, aggitates me.  Then I start to worry about the what ifs... What if this won't be covered?  How will I pay for it?  What if I have to make 10 phone calls after this one to get the answer I need?   What if I get put on hold, eat up my phone minutes and have overages?  (This has happened 4 times, with expensive results). 

Not only is it anxiety producing, but there is a good chance, one phone call of runaround, and my cognitive brain is zapped for the day.  Insurance companies, lawyers, they all talk in circles, with jargon and big words.  And me, I'm anxious and barely able to hang on to the main concepts. 

I wish when having to make these calls I could start with:  "Hi.  My name is Mindy.  These are my diagnoses:  850.9;  310.9; 339.22;  780.4; 723.1;  300.0 & 311.0.   Therefore I would appreciate it, if you would speak to me like a human being, whose thinking may be slightly compromised and if you don't have the information I need, please make a compassionate effort to help me find it.  You help would be greatly appreciated."

Seriously, phone conversations are hard enough for me.  It requires a lot of sustained attention, auditory processing, thinking, being able to respond appropriately and hopefully at a time in the day when I still have some energy left to complete all of these tasks without someone knowing otherwise, such as my speech starting to slur, my leaving long pauses in conversation (it's not that I'm ignoring you or don't think what you have to say is important enough for a response, its that my brain can't process as fast as yours, and if I'm already low in energy resources, I physically can't, so I don't really have a lot to say).   

I'm willing to zap my energy sources for family and friends and attempt a phone conversation..... but it seems really unfair that I am forced to do so, with things that should already be taken care of, such as insurance billing or stupid questions from lawyers, insurance, etc.

 It's such a waste of such a precious resources... stop wasting my spoons... yes, I am Mindy... 850.9.

Sunday, August 5, 2012

The Lord is kind & merciful

As hard as it gets sometimes, I can't thank the Lord enough for the rocks he's placed in my life. 

Yesterday, my best friend took me for a massage and lunch, for her birthday.  And yet, this is how it's always worked.  Truly more than a best friend, it's the kind of relationship where we can get caught up in life and the minute something comes up, we can pick up the phone and are already on the same page again.  Knowing how hard things have been for me, she took this opporunity to take me out and pamper me and just have a normal lunch with a friend.  Exactly what someone like me needs once in a while.  She found something that I could handle, picked me up and gave me a few hours where my brain wasn't my main focus.  Such a wonderful afternoon.  I guess that's what 22 years of friendship can do :)

And then there's my other rock.  My main rock.  My forever argyle anchor.  I am so incredible blessed.  Yesterday, while I was with Jenn he was working in our garden.  I then came home and napped the day away.  Today, he took me to breakfast at Brueggers (again, somewhere I can handle, quiet, low lighting, but got me out of the house).  He got us through the grocery store in 15 minutes, despite needing a full order. (The grocery store is my own personal hell, so loud, noisy, bright, overstimulating.)  Yet he made me feel like I had a productive morning by going along on this short trip.  Another round of napping, to wake up and have help around the house.  (Much needed, as I got sick after just dusting our bedroom.)  Another nap and dinner was waiting for me.

He's the rock God placed in my life to get me through all this.  I honestly don't know where I would be at this point, without him. 

Thank you Lord.

Friday, August 3, 2012

If Only I Had More Spoons...

For this post to make sense, please refer to :  The Spoon Theory

Much like the writer of The Spoon Theory, those of us in post concussion land experience life daily as spoon counters.  Unlike those of you neurotypical people who have an endless supply of spoons, and therefore energy, we live in a world where our spoons are limited.

Many things effect the number of spoons I have each day. 
  • The amount of sleep I got the night before
  • The quality of sleep I had the night before
  • The amount of coffee I've had, (it's a delicate balance before i jitter)
  • Whether I've taken my adderall (for those playing along, I am prescribed amphetamines to try to make me more alert)
  • My body temperature, (easily influenced by humidity)
  • Stress, because why would I have any reason to be stressed?
  • Cognitive strain-- conversations, mental tasks like attempting to balance a check book
  • Emotional Strain--  can be rational or irrational
  • When I ate last
  • Sensory Overload-  loud noises, repetitive noises, bright lights, fluorescent lights, etc.

I could go on and on.  Today started with a smaller amount of spoons than usual, due to the cognitive strain of having to do school work for the past 3 weeks to finish incompletes from the semester of my accident.   I went to bed later than usual, (goodbye to more spoons). 

I had my usual, yogurt, coffee, vitamin B complex and adderall for breakfast.  I know that I now have 4 hours or so to accomplish something on the easy side. I decide to take Maggie for a brief walk.  After I take a break inside to cool off. 

As it was still cool out, I spend some time in the garden weeding.  However, this means a dirty butt, because I can't bend forward from the waist or on my hands and knees without getting dizzy.  With multiple water breaks, I am able to finish the task.  This makes me feel a little bit better about life, as I can visually see the progress I've made while weeding. 

I shower to get all the dirt off from weeding, but this in itself costs some spoons.  Showers and their steam always cost me some spoons.  I decide to do a quick dry of my hair, as I hate having wet hair, but a full hair styling will cost too many spoons.

I then get to spend time, and pretty much the rest of the day's spoons applying for 4 jobs, based on the criteria for unemployment.  The kicker?  I'm too disabled to do anything, but until a hearing for disability occurs, I have to use unemployment to keep things going.  I'd be willing to try something if it was in my abilities, but as it turns out, there aren't many people hiring for a person to file papers, in a dark room, for a couple of hours a day, without having to interact with people and have the ability to take naps on the job. 

Having to apply for those 4 jobs uses up almost all of my spoons:  I have to read through job descriptioins a couple of times, to consider if there is even a chance I could do the job.  It requires reading the paper and transfering information onto envelopes and the worksheet I have to fill out.  I have to print out my resume and then put together the envelope to send to the company.  This time of year, I get easily depressed as many of the ads have to do with teaching positions, that I can't apply for, because I'm too disabled.   Then, comes the guilt of knowing that no matter how hard I want to, I'm not really capable of anything gainful or meaningful employment.

I'm sure there are people out there who don't mind abusing the system, getting money for disability, when they are capable of work.  However, I hate that people make that assumption about all people who are disabled.  Believe me, most of us HATE not being able to provide for ourselves.  It's a huge hit to your self-esteem, and for me, a stealer of many spoons.

That's it.  That's my whole day.  Almost all of my spoons.  I use the final ones to write this post.  I'll spend the rest of the evening staring off into space and napping until bed time. 

There is so much more I need to get done, but there are never enough spoons.  It's a horrible way to live your life.

Thursday, August 2, 2012

This Lovely Life

I just finished reading the book, This Lovely Life:  A Memoir of Premature Motherhood.  Written by Vicki Forman, it is her memoir of giving birth to twins at 24 weeks.  She loses her daughter Ellie after 3 short days.  However, the book mainly focuses her caretaker of her son Evan.  Writing, (the book & the journaling that she includes in parts of her book), seemed therapeutic for her, so I thought I'd give this another go.  Click Here for : This Lovely Life by Vicki Forman

Reading This Lovely Life was one of the things that I had to do in order to complete my incomplete classes from the semester of my accident.  As a hardfast rule, you apparently must complete all incompletes within a year of the courses.  Fortunately, I was given an extra two months, as I was unware of this requirement. 

So the past two months all of my time has gone almost exclusively to completing school work, or sleeping.  The school work, a daily reminder of how much life has changed since March of 2011. Everything takes so much more effort and time than it used to.  For example, I could push out a powerpoint for a 10 minute presentation for class, in the 45 mins I had after work at Pitt before class started.  Earlier this month, I spent 20 hours, over the span 5 days, with many breaks in between.  Typically I could write a 5 page paper, in an hour or two, just letting the thoughts flow out and some quick proofreading.  Now, a ridiculous amount of of prewriting (outlines, rough drafts, etc) and mutliple attempts later I have a paper that is complete, but feels like it was written by a different person, not me.  The amount of time put into this, countless hours over many days with lots of symptoms: migraines, neck spasms, major eye pain and sensitivity, ringing in my ears (which had disappeared for a few months);  brain fog, slurred speech, etc.

It hurts to know that I am still so limited in regards to the things I found so easy before.  Humbling, I guess?  That doesn't make it any easier to take.

In her memoir, Vicki Forman talks about "Rocks, Wanna-Be-There's, and Gingerbread Men" in regards to her social acquaintances after the twins are born so premature.  

  • Rocks are the people who stay and support you, no matter what.  No matter how hard or crazy the situation gets, these are the people who stay by your side and do whatever they can to make things easier for your.
  • Wanna-Be-There's are exactly that.  They want to be there for you, but aren't sure how.  They make goodhearted, yet totally clueless attempts to interact with you once or twice, and then they disappear.
  • Gingerbread Men:  remember the story?  These people observe the trainwreck that has become your life and run, run, run as fast as they can. 

This time of year is really hard for me.  Back to school used to mean: getting a classroom ready with other friends; being involved with band camps; and, feeling the excitement and fresh new beginning that only a new school year can bring. 

Most of the people from these parts of my life:  work, colorguard, band etc, were immediate wanna-be-theres that soon ran off as gingerbread men.  I mean, I get it, they are busy with their own lives.  But when I see their posts on facebook about all that August used to mean to me, it really and truly makes me want to cry.   I never in a million years would have thought I'd be in the same position again, a year later. 

17 months and still suffering... I just want my life back :(