Kara Lynn .NET Blog

They stand in front
They, up above
Looking down
At only my mouth
I am pinned
Wings long withered
Flattened under gravity’s glass
Head jerking toward what I need
Foot in the air
Stretched and pointing with toes
Follow my eyes!
Please!
Head jerking!
Toes pointing!
Eyes screaming!
And they only stare at my mouth

I don’t know what you want
They say
Calm down
They say
Just tell me what you want
They say
I can’t help you
They say
Until you tell me
What you want
And they stare at my mouth
See nothing else
Head jerking!
Toes pointing!
Eyes screaming!
Gestures
My language
Hear with your eyes and your mind!
Language is so much more
Than words!

Still they stare at my mouth
Waiting

-kara 8/27/10

I am so very far from perfect.
It is the mistakes that make up my life.
It is a spider’s web, rather than a solid path.
Aiden is the sunlight on me.

I needed to get out of here that day
when the tempest boiled,
but escape is no longer possible
in this state of body.
This body keeps me.

I endured my head exploding.
The thunder echoed, the rains rushed out.
I screamed as I spun, wringing dead my hope.
I threw my legs, one by one,
toward the nearest shelter,
safe and distant unconsciousness.

-kara

Silk Nog with rum and a sprinkling of nutmeg. Now I can say “let him decorate, let him decorate, let him decorate.” Yes, Lew is trimming the tree that I had always trimmed. I know just how I want it… but that’s just a memory now. Oh dear… the beads look thrown, not swagged… why did I look? Turn around… sip more Nog. Dull the sense, the awareness, the reality of my locked-in energy… my torturous inability. Some more Nog for me, please.

I can not stand all the twisting, side-stepping, dangerous reaching anymore. I want a dumpster and a crew of sturdy men with muscle to take all this shit out of here! I want a barrier-free life. I want I home I can move through.

Looked out the window this morning. I have my path.

I asked Lew to use my snow blower to clear a path for me from side kitchen door to street. My only way out… no stairs. Still waiting. Hope he will pull himself away from his iPhone games long enough to clear a path tonight. I’m so very tired of asking. I bought the snow blower, complete with electric start, to make his life easier. Not easy enough, it seems. Nothing I do will ever be good enough.

Snow, snow, snow, and now more leaks. It’s raining in my kitchen. I don’t even want to look in Aiden’s closet… The door is stuck anyway. Just as well. The ice on the walls and floor would only make me cry. I always took care of these kinds of things. Now I am forced to remain passive while my home is destroyed.

There seems to be no way to fix this. I have been drawing floor plans for about two years now. I’ve come up with some creative solutions that even architects have complimented.

Unfortunately, my house is in dire need of other repair as well. The siding job was a shambles to begin with. There is water under it and in the walls. The previous owner did a lot of shoddy cover-up work, and walked away with a lot of money. Shame on her for hiding the truth about this house.

There is zero overhang on the roof. The windows are rotted and ancient. I have watched water run down the walls, inside, during heavy rain. The water on the walls in Aiden’s closet turns to ice in winter.

I believe siding was installed over rotted out wood in various locations around the house, and this is where the mice and toads continue to get in.

I’ve decided to just live with the flooding in the basement.

So, on top of needing an addition to put a garage, driveway, bedroom, and bathroom on the main level, I need to add roof overhang, remove all siding and rotten plywood, install new plywood as needed, install all new siding and insulation, repair flashing, install all new windows.

My budget is the entire home equity line of credit that I have been approved for, $97,000. The architects and builders I’ve  met with tell me I can’t even get the addition alone for that. It sounds like all I can get is the repairs.

So where will that leave me? I will have a really big monthly loan payment on top of mortgage and everything else, and I still will be a prisoner in  this “home” I’ve come to hate almost as much as ALS.

-kara

Even when I spell everything out, people still get it wrong. Nobody listens. I type instead of talk, because my written words are crystal clear, but I might as well speak with paralyzed mouth, because nobody listens.

Begin forwarded message:

From: Kara
Date: June 8, 2008 5:35:41 PM EDT
To: Clinical Services
Subject: Fwd: need new bipap mask

In my emails below, you will see that I asked for this:
Respironics ComfortLite 2, with direct seals and simple cushion. small/medium

but what was sent was this:
Respironics ComfortLite 2, with NASAL PILLOW and simple cushion. MEDIUM/LARGE

I only opened shipping box, not inner package. I photographed myself trying the sizing template (see attached photos). What will it take to get the correct size and the DIRECT SEALS & SIMPLE CUSHION? How should I proceed with returning the incorrect item? Would you like to pick it up, or send a UPS label?

If it helps, I believe the item number for what I want is: 1025112

————-
- Kara

Begin forwarded message:

From: Kara
Date: May 23, 2008 8:51:56 AM EDT
To: Clinical Services
Subject: Re: need new bipap mask

no, Tuesday is not good. next week is not good at all really. maybe i should just order online, unless you can mail it to me with small/medium size direct seal and simple cushion.

On May 23, 2008, at 8:26 AM, Clinical Services wrote:
Sorry it will be between 12:30-2:30pm. Let me know if that’s ok

Clinical Services

On May 23, 2008, at 8:22 AM, Clinical Services wrote:
Good Morning Kara There Is A Little Problem The Therapist That Was Going To See You Today Call Out Sick. So We Will Have To See You On Tuesday Please Let Me Know If From 9-11 Is Good With You. And Sorry For The Inconvenient.

Clinical Services

—–Original Message—–
From: Kara
Sent: Thursday, May 22, 2008 2:33 PM
To: Clinical Services
Subject: Re: need new bipap mask

no, sorry. was earlier, but not now.

On May 22, 2008, at 1:44 PM, Clinical Services wrote:
Are you available today if necessary

Clinical Services

—–Original Message—–
From: Kara
Sent: Thursday, May 22, 2008 1:05 PM
To: Clinical Services
Subject: Re: need new bipap mask

is tomorrow, between 10am and 1pm doable?

On May 22, 2008, at 12:53 PM, Clinical Services wrote:
Ok I got email we do have the mask but there are different size so we will have to send a therapist to fit you with the Wright size.

Clinical Services

—–Original Message—–
From: Kara
Sent: Thursday, May 22, 2008 12:44 PM
To: Clinical Services
Subject: need new bipap mask

Hi. Here’s what I would like (as long as my insurance will cover it) please. Please advise if not covered.

Respironics ComfortLite 2, with direct seals and simple cushion. small/medium should fit, but if there are several sizing choices, maybe I do need the RT to come to do a fit. I’m available tomorrow 10am-1pm.

http://www.cpapxchange.com/cpap-masks-bipap-masks
/comfort-lite2-cpap-mask-respironics.html

Thanks.

-Kara
————————–
it’s time to make some NOISE about ALS!
-Amyotrophic Lateral Sclerosis… it’s not just Lou Gehrig’s disease!