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.