Rogue Rose

This song passionately calls to me, 
as people from around the world dealing with 

Klippel-Feil Syndrome and associated conditions 
find solace in coming together, on equal ground, many times after a lifetime of feeling alone. 

May our paths be enriched as we continue to gather. 

The lyrics are rich in spirit and heart, as are you. - Sharon Rose 

"Shoulder to Shoulder Around the Fire"   By Rogue Valley 

Well I haven't been sleeping all that well
My mind is a constant carousel where the horses run wild
Until the boardwalk ends
Each one has a rider and I think I know them

These faces familiar, with eyes so deep
Like craters or novels or instinct
I tell them my troubles; all of my cold conflicts
There are no answers sometimes, there is no fix

So we stand shoulder to shoulder we stand side by side
We stand shoulder to shoulder around the fire
We stand shoulder to shoulder we stand side by side
There is no burden to shoulder alone this time

Well my mind keeps on racing; it's a speeding car
Through wastelands and gardens wide and far
And the cities all crumble brick by brick
While I'm stuck on the top floor watching it give

We stand shoulder to shoulder we stand side by side
We stand shoulder to shoulder around the fire
We stand shoulder to shoulder we stand side by side
There is no burden to shoulder alone this time

© 2011 Chris Koza & Rogue Valley

Revised Rose

This blog is going to be about revisions in my life, due to rare congenital conditions that have changed my path and brought me down avenues I never knew existed. I will be frank. I will expose things because I believe we must open the doors regarding what happens to an adult facing this situation.   In future posts I will share more about Klippel-Feil Syndrome and the associated conditions I face, with the hope that it will bring forth positive change. 

Yesterday I went to physical therapy for my first post op assessment. Mind you, I have been to PT many times before. This time, I went to a guy who does IMS therapy. I looked him up in advance because this is one of the few therapies I have not yet tried, and a few with KFS (Klippel-Feil Syndrome) have said it has been beneficial for their muscles/bodies. I am glad that I will be doing therapy with this therapist, Matt. I explained how I had a career that I love, and can barely make it through 10 hours a week now.

  Eventually I will point out the window, to the building across the street and tell him I did the interior design and selected several exterior elements, that he sees daily, 

and change his view of that building forever.

He asked me to explain KFS, and Ehlers-Danlos Syndrome.  I did.  He then said to me "Ok, so this operation was to prevent further issues, and hopefully help you with your function of hands, neck, back, but you are still living with these diseases and it is ongoing."  Ok, he just got 5 stars!

I can't tell you how that rings true, and to hear it, will help me moving forward post-op. You see, people tend to think surgery will "fix" you. Yes, in some respects, but when you have ongoing conditions, you aren't "fixed". The issues remain. The main issue for me, at my skull, is inoperable. This is not something, as much as I hope and believe in my heart, that will just go away.  Accepting that, understanding it, and moving onward, is important, not just for me, but for everyone around me.

Matt also said, that if I have any questions, concerns, or issues relating to what we work on, to call him, any day. He said my scar has developed as a Keloid (thanks Ehlers-Danlos Syndrome) and he can fix that with some tape and pressure, etc. Before he left, he said I have had enough people turn me away, and not understand, and not help me, for far too long.   That statement was huge, and true. 

I will see him twice a week, he worked on my first rib a lot on both sides, and felt my muscles and bones to get an idea of what is going on. 

Then I went to get my taxes done. This has kept me up at night. To be open and honest,  I had to take a chunk of my 401K out, to pay for medical and living expenses this past year. Gulp. I knew had to pay a huge amount in taxes this year on that amount, now, when I filed my taxes. I was ready, but kissing that money goodbye, was just another petal falling to the floor. My money that I worked hard for, my retirement money-gone. But my tax lady really worked with me, we calculated all my Dr expenses, dental expenses, and travel, gas, food, hotels, and it came out better than expected.  She really is on my side and each year she has just pushed along with me. She said when my disability is accepted, we can go after an addendum to get some of the money back, because it was removed due to medical hardship. We have honest conversations about tough things in our lives. I actually like getting my taxes done because of her. Thanks Lenore. 

Then I came home and was just so wiped out.  My dear friend Cathy, stopped by for a quick hug and a gift exchange. Thank you Cathy I so enjoy you.
I was done. My head just pounds constantly, all the time. I wish I could explain what the chronic symptoms do to you. This was a big day, two chores. Yikes!
I can't go to stores, or do something fun or social, or go to an event without it. Chronic pain is relentless in it's chase. I often get up and go into another room, just hoping it will stay in the first room! There is no off switch, no matter how I search for it.

However, as a song says "Everything that drowns me, makes me wanna fly".
Because I want to change it, turn it around, improve, shine on, and make it better. Please.

My First Adventure

I am not a blogger. I don't know the 'rules' but I'm a 'think outside the box' type anyway.   

So, today was my first day. I mean, I drove! Shocker. I had 3 stops. Here goes. 

First I had to get an x-ray at the hospital of my spine/neck to see how the fusion is doing. I have been there so often I could run the joint.  Every time I am there, a machine breaks. Namely the one I need.  Today was no different. Got my x-ray, which was a plus because last time that machine broke.  Asked the tech if I could take a quick photo of the image, even though I will get a CD of it. Nope!   This boggles my mind. It is my body, I am paying for it, but no.  Sat outside the room waiting for the CD of the images.  Well, the server went down. So I can't get it until tomorrow, which means another trip, another stop, blah.  Asked then if I could take a photo. Nope! 

Then I went grocery shopping. This was big. I was out in public doing something normal! It has been 6 weeks.   I did ok, but although I have never had children, Lamaze came in handy.  I only freaked out a few times. First when I could not find the vinegar. Then when I got to the pork tenderloin and the entire section was empty.  Nothing in back either. Now I don't need the vinegar.. was going to make pulled pork in the crock pot.  Simple things, when you are in pain, steal your already empty reserves.   When I got to the check out I knew it was too much, too soon for my body. I could not look down without my vision escaping me.  

The woman in front of me was using a food stamp card. It was not going through. In my hand I had my own brand new food stamp, link card. I have never used one - first timer. The checker and customer looked at my items while they waited for help, and I showed the lady in front of me my card, and said with a smile, "I'm next".  Ice breaker for us all.  She looked at me, glanced up and down and said " Are you buying for someone too?"  I said "Yes, myself".   She quickly said how she was a home care helper. Then a manager came, the issue resolved and she was on her way.  When I paid, it was fine, but two managers were there, as the checker was new, and nervous. I explained how I am new at this card thing too, so we were a perfect match. Plus it was not busy so I was not self conscious. I did not realize that paper towels and things like that, non edibles, are not covered. I asked how to tell what is covered on my receipt, and the manager showed me.

I noticed the second manager a while back during this. She had a gash across her neck.  I walked pushing my cart, doing my Lamaze, throat was closing in on me due to muscle spasms, exhausted, I called out to her.  She turned and saw my scar. I said, I noticed you have had surgery on your neck. So, we talked for quite a while, even though I could have used some water and a chair badly.  Guardian angels in our midst are not to be overlooked. 

Then I drove to the pharmacy. Picked up 4 refills.  On my final stretch of road back to my house, I thought about how such a usual trip was so big for me now. How I have had to toss aside some misconceptions and not judge others based on what I may guess by looking at them. This has been going on for a few years now, but this was just another layer, another moment of realization. Another petal. This lesson, although I would never choose this way of learning it, is huge. So huge that I wish more people were actually able to experience it first hand. How much more humble and kind we would each be, if we were stripped of what we think gives us a certain status, mark, or grade. 

When I got home, I unloaded groceries little by little and put the bags inside the fence in the yard. I knew I was overdoing it, but had to get things in the house.  I took one load to the house and opened the door to release the wild hounds (two spoiled beagles) that live with me.  In the minute it took me to get those groceries on the counter and back outside, Mags had opened the potato chips and run around the yard with the bag, creating a confetti chip affect. So, the chips are half gone, and if yours has dirt on it, consider it natural. She was now romping happily with a bag of dog treats, while Lyla ate potato chips.  She truly is for sale. Today's price is a nickel.  

So, that's it. My first adventure. I am exhausted. Just seeing my car outside of the garage is a big deal. Many muscles are shaking, throat is so tight, pain pain pain, and I am going to rest. Tomorrow I go to see my neurosurgeon for a check up and will start physical therapy from there.  

   More soon! Sending out the best to you. 
   Sharon Rose