Monday, November 1, 2010

Never been a fan of surprises...

Dateline: All Hallow's Eve 3:21am

I am awakened by a pain akin to a knife in my Achilles. This is new, this is unexpected.
One week to the date before my scheduled reconstruction, a new tendon shears.
...and baby makes three.

It's now 5:19 November 1st
I am breathless as I write this, and even the dos percos aren't doing much but making me grouchy and demanding.
I want my surgeon, and I want him now.
The nurses are, at least in theory, trying to find me a spot in an already overbooked lineup of weekend yard injuries.

The urge to vomit is overwhelming, but my body is so tense it won't allow the disgust.
My TENS unit (transdermal electric nerve stimulator) is amped up, but not doing any good.
I can't feel the icepacks.
Not an encouraging sign.

It's like waiting for a call from your first real love, and they aren't calling.
The lump in my throat is choking, and I have to keep reminding myself to breathe.
My phone is my lifeline. Silent and impotent.
The perco bottle is empty.

Please, God, help me.
Please, God, help.

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
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,, 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
Common Ground is a meditation center located in Minneapolis, MN.

Dr. Kirmani - Geneticist at Mayo Clinic, Rochester, MN - my geneticist and EDS specialist for more info

Ehlers-Danlos National Foundation - Types of EDS explained

Margaret Foote - a Virginia blogger with EDS, with whom I soon hope to connect

Everspring Health Cooperative - Dr. Blaska - my acupuncturist

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.

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.

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: or follow @evrspringliving or @ JBlaska on Twitter.

Thursday, September 30, 2010

Merciful Urban Youth, Candy Corn and Percocet

I cried in public for the first time today. Didn't mean to, didn't want to. The tears just came.
Even the gang-bangers gathered in the parking let me pass quietly.
People leave you alone when they think you are a crazy person.

A long time ago - seemingly another lifetime - I had 50 fewer pounds, nearly 20 fewer years, a short skirt, high heels and flowing strawberry curls... Anywho, I was passing the Nankin after a few late night refreshments and some urban youth thought they might like to have my briefcase.

I looked the biggest of the young men squarely in the eye and told him it was haunted. It was odd how quickly they scurried away after I hurled my beautiful case to the sidewalk about ten feet ahead of me started yelling "HEY! YOU BIT ME!" interspersed with random Norwegian swear words. Something about how we had talked about proper behavior in public, more Norwegian, etc... Kicking the poor thing against the wall a dozen or so times added to the effect. (Luckily, those were the days before laptops.) When I turned away they were chatting amongst themselves about the " _____ crazy white lady." I picked up my case and muttered loudly in Norwegian all the way to the ramp.

This time, the drama was nil, and consisted merely of staring straight ahead with tears streaming down my face. Not outright sobbing, just a simple overflow of mind-shattering pain. One of the young men actually looked like he felt sorry for me, and nodded a sign of respect. I half-smiled and he let me pass, purse, cane and tears intact.

I hobbled slowly into CVS. Candy corn and percocet, the dinner of champions. As you can probably tell by my super coherent writing (not), the percs are doing their job, and this batch of candy corn is the best I have ever had.

We adapt to whatever our 'normal' is at the time. Plus, I'm guessing the 'normal' CVS at Snelling & University ... well, I doubt they even noticed.

Wednesday, September 29, 2010

Billy, don't be a hero...

You know when you wake up with with a ridiculous song in your head, it's just going to be one of those days.

After writing incoherently into the wee hours of the morning about a military conflict issue, 'Billy Don't Be a Hero' was the annoying song my brain's jukebox of random tunes selected. I haven't heard that song in years...

Clearly, what we struggle with in our conscious mind hangs around for a while in the subconscious, dinging around trying to make sense of it all.

Wonder what the song will be tomorrow, as a new MRI showed that one of the arthritis-induced bone spurs on my ankle snapped off at some point in the last week and hunkered down between the bones in my ankle. Little bugger (maybe the size of a pea) apparently is like Heed - spherical, but quick pointy in parts.

The pointy parts are amassing a nice glob of fluid around them and shredding the neighboring tendons. Nice. Doogie Doc said, "Hell yeah, if I were a tendon I'd be pissed too." I liked him immediately.

So add to my collection of braces a fancy ski-boot-clippy number, all stylish in black and grey.

Now we play the waiting game for six weeks to see if it floats its way on outta there. Hubs is taking the tendon route and is livid that we're not going in immediately and digging it out.

I have a mixed bag of feelings about that, and about the future. Trying to keep up appearances that I am okay with all of this change is becoming more difficult with each new surgery. At least I'd get a chance to wear that cozy Bair Hugger again.

Just as I finish typing, a shiny silver hair drifted onto my screen. That kinda says it all.

Monday, September 27, 2010

Oops! I couldda had a C8!

Dang head stem. If someone told me that my head's not screwed on straight - they'd be right.

My neck decided to go ahead and age 30 years ahead of the rest of my body.

The doc said it's like trying to balance a bowling ball on a -35 degree angled post. Superb analogy, eh?

Here I sit, ol' bowling ball permanently fused forward like I'm waiting for something. Godot?

The problem comes in that the vertebra that is most affected is the C8. Don't worry, I had no idea what that meant either... Just don't ask me to hold your baby or Fabergé egg collection. Definitely not a good option. That little bony bit at the base of my bowling ball pole holds the nerves that control the hands.

Yup, I'm a dropper. Just randomly, the signals coming through the 8 decide to detour to goodness knows where, and my hands just release. Thank God Dexa over at Kowalski's in White Bear Lake just happens to be the Queen of Cool. She barely batted an eye when I dropped my basket containing white-hot Minestrone, a full pint of blueberries and some schmancy expensive homemade Graham crackers into the shiny-new cheese case display she was showing me.

Aside from spilling nearly every glass at the table when we dine out, I can no longer tell which finger is which when putting on gloves. Guess I'll have to make the move to mittens this year... I'm considering getting ones with the string. I always wanted those as a kid - right around the same time I was famous for my Angus Young impression.

Wednesday, September 22, 2010

The Blue Streak

My new ride arrived today. The irony of the name is not lost on me, nor I'm sure the other rolling souls who travel on The Blue Streak.

One swears up a... Which I did during a practice ride when my thumb and the frame of the simple machine met the solid oak doorframe to our kitchen. The color is, of course, a completely obtrusive bright blue. Chosen, perhaps to be as obvious as possible to others while one streaked down some previously unforeseen hill or HC ramp.

The arrival of the wheelchair has not caused as much internal strife as I imagined. Perhaps because I think it will be only an occasional tool used when absolutely necessary. Even as my new bulging disk and ankle burn sharply through the cocktail of pain meds, denial is still only a river in Egypt.

My mom has taken the news of the chair purchase much harder than I have. Her stubborn German determination keeps her walking on ankles, knees and hips long dry from loss of supportive tissues. She views walking as a gift and boldly refuses use a cane, even though each step causes her to grimace. It is the same determination that my grandfather had as an octagenarian whose heart was only working at 10-15% efficiency in the days before he passed. He insisted he felt fine.

I remember my denial of his impending death during my last visit with him in the hospital, where I even joked that the oxygen mask contraption he was wearing made him look like a frat boy with a bra on his head. We laughed long about that. That is the last living memory I have of my precious Grandpa.

Perhaps denial is a family trait that I have inherited, through a long line of strong German farmers. So you fall and nearly rip your nose off (uncle) - 'tis but a flesh wound - tape it on with duct tape and get back to work. So you have Stage IV breast cancer that will ultimately call you home within the month (aunt) but you still attend the party. Certainly one never talks about the affliction! This is where I peel away from the norm.

With medicine's luck and God's great mercy, the Blue Streak and I will travel many roads together.

We are headed this weekend to the Ren Faire, which ought to be a real trick with the coming rains. The greatest gift that I will have on that trip is my little girlfriend, Analise. A woman far beyond her nine years, she isn't mortified by my limitations. At Game Fair, she held my hand by holding my cane. We hobbled proudly, her hand over mine.

Maybe there is some lesson to be learned in her unconditional kindness and caring. At the sage age of nine, she sees in people what the rest of us have forgotten. Behind every cane, walker and wheelchair there is a person that somebody loves, and isn't ashamed to hold their hand in public.

Saturday, September 18, 2010

The View from Butt-Level

I have a whole new appreciation for a child's viewpoint. You can't see what's ahead of you, someone is leading (or pushing) you wherever you go, and the view really isn't all that great. The world becomes a sea of backsides.

My right ankle recently decided to join the EDS party, and so we are now looking for wheelchairs. It's really the only way we can envision being able to do the things we used to do that require more walking than a trip to the grocery store.

As I watch my bony, crooked fingers type, I know that I won't be able to roll myself more than a few feet, and I will be dependent on a pusher. I worry what other things will evaporate from my repertoire of independence, and am starting to realize the implications of this disability thing.

An email from my awesome doc at Mayo confirmed that I should begin the process of applying for permanent disability license plates. It's hard seeing your future in the cold glow of the computer screen.

So I think I have my new ride picked out. It's a snappy little blue number.

Tuesday, September 14, 2010

This is who I really am.

I am coming out today, and coming into the transparency I preach about in life and in social media.

I have what we in the pain community call "invisible pain." We look normal - whatever that is - we act normal and we paste on smiles and a happy countenance when we are out and about. Then we go home and load on icepacks or heating pads, get out the support braces, and come into our "real" selves and sometimes just cry.

There are tears that flow and we don't even know that we're crying, although most of the time they are tears of loss for the things we used to be able to do, for the things we won't ever be able to do, and for our families that know the reality and cope with this on a daily basis.

In my case, I was recently diagnosed with Ehlers-Danlos Syndrome. Yeah, don't worry if you've never heard of it, it is a rare collagen disorder that hits people with differing degrees of disability. What it means is that, as my Rheumatologist so gently (not) explained it, is that if our bodies are bricks and mortar, my mortar is crumbling.

My spine is collapsing, and all but two of the lovely cushy disks I had in the past are either bulging, collapsed or in the process of collapsing. The disorder causes my fingers and hips to randomly dislocate for lack of tendon strength, and my right hand is pulling apart - literally. The tissue that held it together for 40 years has dissolved, either through a bajillion corto shots or simply the disorder, and many days, I just tape it together.

Sports tape, braces and canes have become my best buddies.

I have been wholly and undeservedly blessed with the most amazing Mom and husband who understand the tears, the loss and the frustration... and share in it, as there is nothing that medicine can do to stop the decay. The disorder is not curable, only managable through a host of pain meds, shots and potentially fusing of particularly fussy bones.

My graduate degree was chosen out of crazycoolness, and out of knowing that I need to find a career that doesn't depend on my ability to walk or move around much. My mind is fully intact, but my body sometimes doesn't cooperate and move as the brain directs. Thank God for computers and wireless.

Telling this to whomever choses to read it has been a decision I've had great struggles with. Many of my Twin Cities social media buddies have seen the braces and canes, and only a select few know what's really going on. Joel E. Carlson, bless his heart, was the first person I told. His confidentiality has been priceless.

Coming out of the chronic and incurable closet is difficult. It means that my many pairs of comfy golf shoes may only see a ride in the cart, that my clubs may become useless as striking the ball and swinging my arms has resulted in past spontaneous dislocations. It means that we had to get a wheelchair for the State Fair, and while my niece loved the ride and thought it was fun, the looks of pity and wondering why a 40-year old who looks "normal" would be in a wheelchair were cutting.

When you see me out and about, please just understand the cane and the hand braces. It's okay. I'm okay and the same person you've met, just now the person who is more honest with you.

I have decided to launch my business wholeheartedly this Fall, as the realization that sitting at a typical work desk, or having a job that requires more than basic walking may be too much for this new body of mine. Being able to help people and run a business mostly wireless is the best career gift, and one I look forward to taking advantage of wholeheartedly.

Thank you for taking time to read this, and yes, I am the same person. Just the same person with a fancy selection of canes instead of golf shoes.