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Me and Bill last September at the 2013 Walk
This update comes rather belated this year, but as you will read below, quite a bit has happened and needs to be reported about my ongoing journey with IBM. This past year has proven to be a balancing act for me; it is as if I have been balancing my way along a very narrow mountain ridge with steep drop offs on both sides.
Every time I was making a transfer, whether from bed to wheel chair, to and from toilet, to stairlift, or any other place I needed to move; I was always concentrating on and using my compensating techniques that I had developed over the years. Each and every time, I knew I was playing a rather dangerous game with my safety and often sent a quick prayer above asking for protection from the falls I feared. Yet, I wanted to hang on to the last pieces of my independence and chose to block out all the signals that my body was giving me that these transfers were getting ever more dangerous with each passing week. This game came at a tremendous cost of energy and nerves for me, but I still stuck with it for yet another full year.
What happened in the last week of March 2014 is best explained with a copy of my posting on the TMA IBM discussion board from April 2nd:
Huge changes from one day to the next!
Later on April 28, Bill posted on my behalf:
Latest update on Dagmar
On the days I was able to get into my chair
and out of the room, I appreciated this view.
Life has been very different since my return home, as I posted on May 6th:
Well, I am finally home again from a 25 day stint at a specialty/rehab hospital. Now VNA services will determine what can be done to help me with my new status of needing a hospital bed and being totally dependent for all transfers, having to use diapers plus a commode.
I am grieving the loss of my limited independence from before, and it will take me a while to adjust to this new state of IBM for me. I am grateful for all the encouragement and prayers on my behalf and am extremely thankful for the help from my husband and sons. In spite of everything, I am blessed to have their unconditional support in this difficult time.
I am so very grateful for the outpouring of caring, compassion and encouraging support you have given me on the TMA IBM discussion board, I treasure all my friends there, even if we have never met in person. The same also applies to all the posts on the FB IBM group page when Bill posted about me there.
Now, I find that I have become a more loving and empathic person and will share my feelings of love and gratitude as often as possible. I try to make the most of each day, and my long standing motto: Carpe Diem still applies. I am aiming not to lose my identity to my diagnosis of Inclusion Body Myositis, but try to focus on the things I can still do and not on the things that are no longer possible.
Entrance to the 2013 Dagmar's Walk in the Park for Myositis
I am proud to say that the Slaven family is planning on having another fundraising walk on September 13, 2014 which hopefully I will be able to attend. Last year's walk turned out to be a super successful event, due to my family's and friends' tremendous support. And also my friend Suzie's fantastic fundraising effort, who also had the loving and very generous support from her family and friends. Together we raised close to $13K, which will definitely help future research in finding cures for myositis. To everyone who helped, walked, and/or contributed I send my heartfelt gratitude, I am humbled by your generosity.
You can click here for the link to last year's (2013) fundraiser video. These walks have always been a great source of encouragement for me, and my longstanding motto Carpe Diem still applies, even now!
I am closing this update with one of my favorite quotes by Maya Angelou:
If you are not facing down demons, you are not really alive.
Dagmar Slaven, July 2014
I am sad to report that in the last twelve months we lost a few more friends, may they rest in peace:
Janet Reed, NH
Roly Clulow, South Africa
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