"Ugh! What happened to your ankle?!
It looks awful!
I was staring at it when we stretched, and UGH!..."
Just FYI - What NOT to say to someone in your yoga class.
Looking forward to seeing my amazing yoga teacher, most of my classmates, and the UGH! Lady.
Makes me almost want to take a red Sharpie to it and really Frankenstein it up for her viewing pleasure.
Showing posts with label yoga. Show all posts
Showing posts with label yoga. Show all posts
Thursday, March 3, 2011
Thursday, October 28, 2010
I wish this for you, without the pain, without the tears.
I have discovered what it's like to have my "normal" create sadness within others, and I don't like it. Good Midwestern Irish/Germans do their right best to make other people feel comfortable, not make them cry.
My precious mamma sobbed this weekend. People I've never met at Mom's church teared up meeting me, and said that they are praying for me; I made my friends Aimee and Cathy tear up yesterday; and all of these tears just break my heart.
How does one adequately lie and tell others that everything will be okay - that things are good? I dread this upcoming surgery, as I have no idea how I will bolt it on through what promises to be exquisite discomfort. I simply can't bear to see more people sad about this.
Several people have asked about how one keeps a positive attitude when their body is literally falling apart before their eyes, and the answer is simple. The alternative sucks.
If the desire to curl up in a fetal ball in a dark room under a mountain of covers feeling sorry for myself ever takes over, I do it. Alone. Yes, that really happens, but who wants to be around that person? I sure as hell don't.
The sunny disposition is not an act, however. It's a newfound appreciation for the things in life I took for granted for 40 years. Don't become the person that makes others cry before you discover truly being present in your life to enjoy these simple things:
The color of the sky in the morning
Shapes that clouds make
The intricate veining of every individual leaf
The amazing softness of your pets
The warmth of a doggie belly
The sound of a bumblebee
Cultivating a garden
Basil and Ginger
Umami
The feel of a breeze
Moving a joint without pain
Yoga's Savasana
The breath of a sleeping loved one on your skin
The smells during cooking
8,000,000 other things
It's not focusing on the things I can no longer do that I loved, but discovering the joy in the things I've always had and never realized. I wish this for you, without the pain, without the tears.
My precious mamma sobbed this weekend. People I've never met at Mom's church teared up meeting me, and said that they are praying for me; I made my friends Aimee and Cathy tear up yesterday; and all of these tears just break my heart.
How does one adequately lie and tell others that everything will be okay - that things are good? I dread this upcoming surgery, as I have no idea how I will bolt it on through what promises to be exquisite discomfort. I simply can't bear to see more people sad about this.
Several people have asked about how one keeps a positive attitude when their body is literally falling apart before their eyes, and the answer is simple. The alternative sucks.
If the desire to curl up in a fetal ball in a dark room under a mountain of covers feeling sorry for myself ever takes over, I do it. Alone. Yes, that really happens, but who wants to be around that person? I sure as hell don't.
The sunny disposition is not an act, however. It's a newfound appreciation for the things in life I took for granted for 40 years. Don't become the person that makes others cry before you discover truly being present in your life to enjoy these simple things:
The color of the sky in the morning
Shapes that clouds make
The intricate veining of every individual leaf
The amazing softness of your pets
The warmth of a doggie belly
The sound of a bumblebee
Cultivating a garden
Basil and Ginger
Umami
The feel of a breeze
Moving a joint without pain
Yoga's Savasana
The breath of a sleeping loved one on your skin
The smells during cooking
8,000,000 other things
It's not focusing on the things I can no longer do that I loved, but discovering the joy in the things I've always had and never realized. I wish this for you, without the pain, without the tears.
Friday, October 15, 2010
Creating a Comprehensive EDS Resource
After my freakout the last two days, I have come to realize that the best thing and only thing that I can do to battle this disease is to create a resource for others struggling with EDS. The numbers of us are so few, and the support resources available are minimal.
Even the national foundation site for EDS, http://www.ednf.com, is sorely lacking in any type of true help, other than descriptive information. If you think you or someone you love may have EDS, this site is great. Once diagnosed, the information dwindles - even the 'calendar of events' is blank for months on end.
Support groups are relatively abundant in Europe and Australia, but access to their sites is geo-restrictive. Chronic pain online groups are available, but also require a selection of maladies that do not include EDS, and state that basically, only those suffering from fibromyalgia, POTS, Lyme disease, and the like are invited to participate. Ironically, these maladies are the very same misdiagnoses EDS people are categorized as having.
Parents of EDS kids are accused of awful things, such as Munchausen by Proxy and child abuse, as their little loved ones come to school with frequent massive bruising, dislocations and broken bones.
Thus, it will now be my goal to focus not solely on my complications, but on providing tangible assistance and resources for people with all forms of Ehlers-Danlos. In the past, I have been a leader in my industry, and I now want to focus those skills on becoming a leader in the fight against my genetic disorder.
I encourage you to actively use the comments section for your own content, suggestions and resources you have used or encountered in your lives. I welcome both Western and Eastern medicine techniques and practices, suggestions for gentle healing yoga, meditation and spiritual assistance, regardless of religion.
For starters, here are some suggestions I have to kick off this new direction of Taping Myself Together:
Common Ground Meditation Center - courtesy of Sarah Faiks
http://www.commongroundmeditation.org
Common Ground is a meditation center located in Minneapolis, MN.
Dr. Kirmani - Geneticist at Mayo Clinic, Rochester, MN - my geneticist and EDS specialist
http://www.mayoclinic.org/ehlers-danlos-syndrome/ for more info
Ehlers-Danlos National Foundation - Types of EDS explained
http://www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=88888969
Margaret Foote - a Virginia blogger with EDS, with whom I soon hope to connect
http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendID=60068651&blogID=258675651&MyToken=e2fa65ba-51b0-4154-81a7-0100b901e9ac
Everspring Health Cooperative - Dr. Blaska - my acupuncturist
http://www.everspringhealth.com
http://www.everspringliving.com
That's a start. I have a new outlook, and a new purpose to put what I learn about this incurable meanie to work for others.
Even the national foundation site for EDS, http://www.ednf.com, is sorely lacking in any type of true help, other than descriptive information. If you think you or someone you love may have EDS, this site is great. Once diagnosed, the information dwindles - even the 'calendar of events' is blank for months on end.
Support groups are relatively abundant in Europe and Australia, but access to their sites is geo-restrictive. Chronic pain online groups are available, but also require a selection of maladies that do not include EDS, and state that basically, only those suffering from fibromyalgia, POTS, Lyme disease, and the like are invited to participate. Ironically, these maladies are the very same misdiagnoses EDS people are categorized as having.
Parents of EDS kids are accused of awful things, such as Munchausen by Proxy and child abuse, as their little loved ones come to school with frequent massive bruising, dislocations and broken bones.
Thus, it will now be my goal to focus not solely on my complications, but on providing tangible assistance and resources for people with all forms of Ehlers-Danlos. In the past, I have been a leader in my industry, and I now want to focus those skills on becoming a leader in the fight against my genetic disorder.
I encourage you to actively use the comments section for your own content, suggestions and resources you have used or encountered in your lives. I welcome both Western and Eastern medicine techniques and practices, suggestions for gentle healing yoga, meditation and spiritual assistance, regardless of religion.
For starters, here are some suggestions I have to kick off this new direction of Taping Myself Together:
Common Ground Meditation Center - courtesy of Sarah Faiks
http://www.commongroundmeditation.org
Common Ground is a meditation center located in Minneapolis, MN.
Dr. Kirmani - Geneticist at Mayo Clinic, Rochester, MN - my geneticist and EDS specialist
http://www.mayoclinic.org/ehlers-danlos-syndrome/ for more info
Ehlers-Danlos National Foundation - Types of EDS explained
http://www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=88888969
Margaret Foote - a Virginia blogger with EDS, with whom I soon hope to connect
http://blogs.myspace.com/index.cfm?fuseaction=blog.view&friendID=60068651&blogID=258675651&MyToken=e2fa65ba-51b0-4154-81a7-0100b901e9ac
Everspring Health Cooperative - Dr. Blaska - my acupuncturist
http://www.everspringhealth.com
http://www.everspringliving.com
That's a start. I have a new outlook, and a new purpose to put what I learn about this incurable meanie to work for others.
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