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July 2014

Me and Bill at the 2013 Walk
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!

I do not find it easy to post about this but I do owe it to everyone here.

During the past year I kept on doing what was still possible but knowing that with each time I was transferring to and from wheel chair to toilet, stairlift or bed, my maneuvers were extremely dangerous for me and I did risk the chance of taking a fall and could break something. I was very much aware that any mishap and losing the function of only one of my limbs would render me instantly totally dependent for everything.

I chose to block it out and continued on as I was until last Tuesday, when due to the ongoing and relentless muscle loss I was no longer able to get up from the toilet. I had to call my husband from my cell phone (he had gone out for a bit but was in the neighborhood and was home within 10 minutes.) With the help of a gait belt that I had bought some time ago he was able to hoist me back up and into my wheel chair.

From this moment on I could no longer depend on any of the maneuvers I had used for a long time, stubbornly, to do what I still wanted and could do, albeit dangerously. Now my weakened body finally will no longer cooperate and simply said it had had enough!

Needless to say I am devastated by this latest loss, but have to remember I have been fighting this uninvited and unwelcome guest who has stayed with me for the last 25 years, and I have been trying very hard not to let this guest rob me of my soul.

This crisis meant VNA services, establishing the need for a hospital bed, a lift device and a rolling shower commode chair. None of this can happen over night, and we are in limbo state as to how soon it may happen. It will also require our looking for a PCA (personal care attendant) to give Bill a break, who to make things worse, has had knee problems and on that fateful day had just had a cortisone shot.

To be prepared for that fateful day, I have had an Easy Pivot Lift from the MDA loan closet plus a commode that have graced our living room with their presence since last year, so in a way I was not totally unprepared for this day finally to catch up with me and my body. I am so very grateful to have been at least proactive in that respect, but my stubborn nature wanted to eke out more time and I eked out a little more than a year from our bathroom renovation last January to this year's March.

My present problem is the use of the lifter which is rather outdated- it came with a VHS tape for instruction- and cannot be adjusted to my body dimensions, leaving me with bruises on my chest and arms. However, I am grateful that I had it available in our home instantly. The other problem is our 2 story home which will require the need for us to have a second set of devices for both levels, since the roll in shower is upstairs. Having to use diapers full time now, there is no place downstairs to clean me up if I soil myself. Bill is my angel and rock but it hurts him and our children terribly to see me in this state. We do pray a lot and try to take one day at a time. I certainly would appreciate your support and prayers for me and my family. I AM devastated but do also count my blessings for everything in my life that has been available to me to help myself over these years of losses, grief and yes, acceptance of IBM, it is what it is, but I refuse to let it rob my soul.

Your sad and overwhelmed friend Dagmar

Later on April 28, Bill posted on my behalf:

Latest update on Dagmar

Hi, Just a Quick note to let you know Dagmar has been in the hospital since 4/8. IBM caught up with us on 3/25 and she could no longer transfer on her own. We tried it on our own for two weeks and ended up in the ER at South Shore Hospital. She was transferred to Radius Specialty Hospital 114 Whitwell St Quincy, MA 02169 and has been there for three weeks. Weak and grieving the loss but working to get home as soon as possible with assistance there. Not up to visitors or phone calls and no room for flowers, but enjoys the cards she has received. She says she actually feels the many prayers being offered up on her behalf. Dagmar via Bill(spouse)

view from Quincy Radius Rehab
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
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

In Memoriam

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

Gone but never forgotten.

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