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.
Thursday, October 28, 2010
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.
Thursday, October 14, 2010
Morning Glories and Ankles
It's a crisp October morning; the morning glories that sprawl across the fence have stopped their ritual of closing at night. Even flowers tire of the things they are genetically coded to do.
My appointment this morning is to discuss the breakdown of my right ankle. I read the doctor's report of his plans for this latest repair. Another surgery, another temporary fix.
What I thought would be a simple scope plucking of a single bone spur is really a full open, replete with a bone debriding of where the bones meet the ankle joint, somehow fixing the the two tendons that have split and are continuing their travels up my leg, and fishing out the multiple little spurs that have broken off and are causing the mess.
With EDS, we don't always heal properly, and this concern is why DoogieDoc wanted to wait - to talk to other docs that have done multiple previous surgeries on me to see what he was getting himself into.
To add to the fun, my precious little Beagle Bassett Bella is having surgery today as well, to remove mysterious lumps that are popping up on her little torso. I forgot about that - how could I forget that? Today is not a banner day.
My full-on breakdown and release of emotion yesterday didn't do the trick, and I worry that my outward PollyAnna attitude about all of this is starting to fade. I worry that my fix-it-all husband will become increasingly frustrated with a wife he can't fix. I am very concerned that my Mom will worry herself into another heart attack, as this will not be the end of the EDS battle.
My knees have both already lost their menisci and my shoulders crunch with the slightest movement. My left ankle tendons are tearing up my leg too - I can feel that, but like a child hiding a visit to the cookie jar, I am hiding that fact from others, and worse, myself.
I am so scared, and like EDS, there is no cure for that.
My appointment this morning is to discuss the breakdown of my right ankle. I read the doctor's report of his plans for this latest repair. Another surgery, another temporary fix.
What I thought would be a simple scope plucking of a single bone spur is really a full open, replete with a bone debriding of where the bones meet the ankle joint, somehow fixing the the two tendons that have split and are continuing their travels up my leg, and fishing out the multiple little spurs that have broken off and are causing the mess.
With EDS, we don't always heal properly, and this concern is why DoogieDoc wanted to wait - to talk to other docs that have done multiple previous surgeries on me to see what he was getting himself into.
To add to the fun, my precious little Beagle Bassett Bella is having surgery today as well, to remove mysterious lumps that are popping up on her little torso. I forgot about that - how could I forget that? Today is not a banner day.
My full-on breakdown and release of emotion yesterday didn't do the trick, and I worry that my outward PollyAnna attitude about all of this is starting to fade. I worry that my fix-it-all husband will become increasingly frustrated with a wife he can't fix. I am very concerned that my Mom will worry herself into another heart attack, as this will not be the end of the EDS battle.
My knees have both already lost their menisci and my shoulders crunch with the slightest movement. My left ankle tendons are tearing up my leg too - I can feel that, but like a child hiding a visit to the cookie jar, I am hiding that fact from others, and worse, myself.
I am so scared, and like EDS, there is no cure for that.
Sunday, October 10, 2010
Put down the computer and be kind IRL
Today is a beautiful day. It's warm in October, the birds are chattering, squirrels are preparing for winter and pups are happy in the yard.
On these days, it's easy to forget that there are people struggling for all of the things we can take for granted. Just a few simple suggestions on how you can make someone's day:
- Handwrite a card to your grandparents, it will mean the world.
- Pay for someone's coffee.
- Smile at a stranger.
- Offer to carry an elderly person's groceries to their car.
- Tell your kids how proud you are of them.*
- Fill your bird feeders.
- Share your abundant garden.
- Kiss your significant other for just a bit longer than normal.
- Call your mother.
- Take a bouquet of garden flowers to a nursing home, and ask them to give them anonymously to a lonely resident.
- Thank a military serviceperson.
- Rake leaves for someone else.
It is the simple and inexpensive acts of kindness that the world needs. Not more words, expensive gifts of jewelry, huge showy displays or unfulfilled thoughts or promises to help someone 'later' or 'sometime.'
Get off the computer and head into real life - be a blessing to others. Your simple act of kindness may just change their day.
If you care to join me, I'm off to have coffee with a man showing his support for World Homelessness Day by just observing people go about their Sunday at Starbucks in Highland. He was a former high-powered marketing executive who has spent many nights sleeping in his car, going hungry and feeling hopeless and lonely through experiencing homelessness firsthand. Health issues compounded his experience. I plan to do as many things on my list today that my body will allow. The rest will have to wait until tomorrow.
***
*One of the saddest things I have ever witnessed was a former boss of mine, who had never been told by his father that he was proud of him until he was in his 30's. He came in my office with tears streaming down his face, he was so happy. No child should ever have to wait thirty years for simple words of love.
On these days, it's easy to forget that there are people struggling for all of the things we can take for granted. Just a few simple suggestions on how you can make someone's day:
- Handwrite a card to your grandparents, it will mean the world.
- Pay for someone's coffee.
- Smile at a stranger.
- Offer to carry an elderly person's groceries to their car.
- Tell your kids how proud you are of them.*
- Fill your bird feeders.
- Share your abundant garden.
- Kiss your significant other for just a bit longer than normal.
- Call your mother.
- Take a bouquet of garden flowers to a nursing home, and ask them to give them anonymously to a lonely resident.
- Thank a military serviceperson.
- Rake leaves for someone else.
It is the simple and inexpensive acts of kindness that the world needs. Not more words, expensive gifts of jewelry, huge showy displays or unfulfilled thoughts or promises to help someone 'later' or 'sometime.'
Get off the computer and head into real life - be a blessing to others. Your simple act of kindness may just change their day.
If you care to join me, I'm off to have coffee with a man showing his support for World Homelessness Day by just observing people go about their Sunday at Starbucks in Highland. He was a former high-powered marketing executive who has spent many nights sleeping in his car, going hungry and feeling hopeless and lonely through experiencing homelessness firsthand. Health issues compounded his experience. I plan to do as many things on my list today that my body will allow. The rest will have to wait until tomorrow.
***
*One of the saddest things I have ever witnessed was a former boss of mine, who had never been told by his father that he was proud of him until he was in his 30's. He came in my office with tears streaming down his face, he was so happy. No child should ever have to wait thirty years for simple words of love.
Monday, October 4, 2010
Throwing John in My Nest
WARNING: This post makes references to social media. If you are not a Twitter person, please continue reading for content. If you are a fellow Tweep, consider checking these folks / events out. We are a pretty welcoming lot. Just don't try to sell us stuff.
***
I love that social media has introduced me to many amazing and talented people, with skill sets I may never have otherwise encountered in my daily life.
One of these people is @JBlaska. After a fantastic conversation at #stptweetup with the delightful @grandciel about health, healing, and how we are just reaching the tip of the iceberg in our knowledge, we asked one another about acupuncture. Neither of us had tried it, nor knew much about it. We vowed to keep our Twitter-eyes open.
I no more returned to my seat, and John introduced himself. We did the usual pleasantries, and I discovered lo and behold that John had traveled the world to study with the best of the best Tibetan and Chinese practitioners of Eastern medicine.
My luck with Western medicine was proving to be more of a medicate-and-wait-for-the-next-thing-to-tear-apart, then see if they can be braced, injected or operated upon. Four surgeries - more, actually, if you count the five c-spine epidurals - one pending with this wicked ankle, more cortisone shots than I can count in my hands and elbows, a brace collection that would rival that of a linebacker, and a medication list that literally has me on a first-name basis with the pharmos over at CVS... Western was doing me no real proactive favors.
The next day, John emailed me a casual "thanks for chatting"-type note with a basic reminder of who he was. Nice. Email or written, thank you notes get my attention.
Now, I'm not a big believer in that The Secret chickie. She's a tad too kooky-dook for my taste, but I digress... Meeting John was serendipitous. Maybe even coincidence.
"God feeds all sparrows, but he doesn't throw seed in the nest." He threw John in my nest, and I needed that extra push to make the call and check it out.
I have said it before, but in case it got missed: the goal of this blog is to spare even one person the frustration and pain that this rare disorder has brought into my life. If someone five years from now sees themselves and says - "Hey! That's me!" and can get diagnosed earlier, more quickly and without being told it's all in their head, it's worth it.
Transparency on the table, this is not an overt or covert ad for John and his business. However, three weekly visits later and there seems to be a reduced constant "haze" or aura of pain 24 hours a day. Migraine sufferers know what I am talking about. Anyone who has ever bonked their funny bone knows, too. This EDS pain is like that, and never goes away. It's neurological pain, baby, that sh*t sticks with you, until you medicate so heavily that it's a drug haze. Either way, it's zombietown.
Whether it is the acupuncture (totally painless, by the way), the heat light, the pure relaxation, or the comfort John provides in his utterlyfantasticallywonderouslyamazing knowledge of the human body, it HAS helped. Plus, the cozy and peaceful office is a 180 from the cold, sterile brightness of a traditional doctors' lair.
Maybe it's that, or a combination of things. Don't know, don't care. The percocet bottle will hopefully remain in it's little hutch today. It ain't magic, folks. Just because a method of healing was discovered thousands of years ago by people who look and live differently than we do, doesn't negate the validity.
Well, I am hopping off my soapbox and heading to the kitchen to *stand* (yay!) and make some bread and some dinner. When standing long enough to cut some veggies totals you out for the day, being able to cook and move on is a gift.
Secret? Whateves. I think it's John.
***
Not paid, not requested, not even approved. Here is my biased recommendation if you are in pain: www.everspringhealth.com or follow @evrspringliving or @ JBlaska on Twitter.
***
I love that social media has introduced me to many amazing and talented people, with skill sets I may never have otherwise encountered in my daily life.
One of these people is @JBlaska. After a fantastic conversation at #stptweetup with the delightful @grandciel about health, healing, and how we are just reaching the tip of the iceberg in our knowledge, we asked one another about acupuncture. Neither of us had tried it, nor knew much about it. We vowed to keep our Twitter-eyes open.
I no more returned to my seat, and John introduced himself. We did the usual pleasantries, and I discovered lo and behold that John had traveled the world to study with the best of the best Tibetan and Chinese practitioners of Eastern medicine.
My luck with Western medicine was proving to be more of a medicate-and-wait-for-the-next-thing-to-tear-apart, then see if they can be braced, injected or operated upon. Four surgeries - more, actually, if you count the five c-spine epidurals - one pending with this wicked ankle, more cortisone shots than I can count in my hands and elbows, a brace collection that would rival that of a linebacker, and a medication list that literally has me on a first-name basis with the pharmos over at CVS... Western was doing me no real proactive favors.
The next day, John emailed me a casual "thanks for chatting"-type note with a basic reminder of who he was. Nice. Email or written, thank you notes get my attention.
Now, I'm not a big believer in that The Secret chickie. She's a tad too kooky-dook for my taste, but I digress... Meeting John was serendipitous. Maybe even coincidence.
"God feeds all sparrows, but he doesn't throw seed in the nest." He threw John in my nest, and I needed that extra push to make the call and check it out.
I have said it before, but in case it got missed: the goal of this blog is to spare even one person the frustration and pain that this rare disorder has brought into my life. If someone five years from now sees themselves and says - "Hey! That's me!" and can get diagnosed earlier, more quickly and without being told it's all in their head, it's worth it.
Transparency on the table, this is not an overt or covert ad for John and his business. However, three weekly visits later and there seems to be a reduced constant "haze" or aura of pain 24 hours a day. Migraine sufferers know what I am talking about. Anyone who has ever bonked their funny bone knows, too. This EDS pain is like that, and never goes away. It's neurological pain, baby, that sh*t sticks with you, until you medicate so heavily that it's a drug haze. Either way, it's zombietown.
Whether it is the acupuncture (totally painless, by the way), the heat light, the pure relaxation, or the comfort John provides in his utterlyfantasticallywonderouslyamazing knowledge of the human body, it HAS helped. Plus, the cozy and peaceful office is a 180 from the cold, sterile brightness of a traditional doctors' lair.
Maybe it's that, or a combination of things. Don't know, don't care. The percocet bottle will hopefully remain in it's little hutch today. It ain't magic, folks. Just because a method of healing was discovered thousands of years ago by people who look and live differently than we do, doesn't negate the validity.
Well, I am hopping off my soapbox and heading to the kitchen to *stand* (yay!) and make some bread and some dinner. When standing long enough to cut some veggies totals you out for the day, being able to cook and move on is a gift.
Secret? Whateves. I think it's John.
***
Not paid, not requested, not even approved. Here is my biased recommendation if you are in pain: www.everspringhealth.com or follow @evrspringliving or @ JBlaska on Twitter.
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