Thursday, July 5, 2012

"why are we zebras?"







   why do they call us zebras, we EDSers??  because first year med students are taught that if they "hear hoofbeats, look for horses, not zebras".
   this means to look for the obvious causes first. this is also the reason why many people with rare conditions are often misdiagnosed or undiagnosed, do not receive the proper treatment, and are often made worse by the treatments they do receive. it is too late for me. i just got diagnosed this year, although i've been a mess for 49 years. i was born symptomatic and injured horribly in gym classes, yet it was a classic case of "blame the victim".  because the doctors couldn't find what was wrong, i was a hypochondriac.
   by the time my daughter came along, my grandma and i had figured out that it was at least something that "ran in the family". now my daughter is 24. i tried to protect her from injury, but not knowing what was wrong was horrible.  i saw her in such pain as a toddler, and suffering with scoliosis by the time she was six. 
   now she has a daughter too. my little miracle had one of her own! while this makes me incredibly happy, it also worries me sick. i hope my daughter grows to accept her "zebrahood" and protects her mobility as much as she can. i pray that my granddaughter doesn't have EDS. she's 3 1/2 and super-bendy, but little kids usually are. she hasn't shown any symptoms, which delights me, as her mom was crying with "growing pains" by her age.





              this happy little girl should never have to worry about a zebra being anything but a toy.






   i want her to be able to travel and see the world, the way i did, only without pain or hardship. this is an experience from my travels.



                                                  not exactly what i would call "accessible".





       from the song, 'carey', by joni mitchell, my life's goal: "maybe i'll go to amsterdam, or maybe i'll go to rome, and rent me a grand piano and put some flowers 'round my room".




                                    made it here first, in 1979, and sang in the Concert Gebouw

                                   






                           eventually i also made it here, in 2003, when i sang in a mass at St Peter's










                    i want my daughter and granddaughter to be able to live out their dreams, too.









cadencejubilate sent you a video: "Joni Mitchell - Carey (with full intro)"

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love the intro with the story behind this song. "maybe i'll go to amsterdam or maybe i'll go to rome"
Joni Mitchell - Carey (with full intro)
full concert : http://www.youtube.com/view_play_list?p=C14FDDCAB2DA03FB
song 9 (cut's 9 &10) from (Kept By) Her Own Devices
a live concert sometime in 1972
great sound !
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901 Cherry Ave, San Bruno, CA 94066

Tuesday, July 3, 2012

"kinds of desire"




 
    one of my dear friends, bd, is an adjunct professor of art and spirituality. she's currently preparing for a class on "artistic expressions of religious experience", and soliciting contributions from her friends. her latest request is for artworks that express "the religious experience of desire". i sent her the video of the mozart  "ave verum corpus".





    it always feels like reaching for heaven when i sing it. thinking in particular of a tour in quebec, singing it with my friends on the top of "mount royal", at St Joseph's Oratory. above is a photo of the outside. here is the "chapel" where we sang. we were in the organ/choir loft in the back. we knew the piece and each other so well that it came to life in a way that i hope dear wolfie would appreciate. 












   above the chapel and the cathedral is the little chapel of brother andre (may be St Andre now). people came to him for healing. they left their crutches and canes behind in faith. i was 3 weeks out of a full reconstruction of my right knee, hiding the giant brace under my gown, and walking with a cane. my friends teased me about leaving it there.         * some people asked why there were only children's crutches there- dumb tourists. people were much smaller then.













 

    the question, of course, set this philosopher off on the kinds of desire we experience. on the face of it, i desire to break my shackles and get out of this room! my corporeal "tree", sadly, is an illusion, like this one. though my will is strong, i am fleshed out with ephemera. i have to release "desire" like a balloon every day, the one made of futile regrets and wants.                      lucky me, there are many things in my life that have nothing to do with that kind, with traveling and touring and "going".    like being.







                                                                                                             

   my desires are for what i already have, which is a very old prescription for happiness. laughing with my daughter will never be out of my reach.  
                                                                                    



 








    hearing her sing more beautifully than i could do will never grow old, nor will knowing how many talents she has, musical and otherwise. some i have passed along to her, as well as zebrahood, for which i can take equally no pride or blame. in every moment, i know she is on the planet, and that fulfills a desire that i thought was hopeless, to have any children of my own. 










 this is her best talent, mothering her daughter, Cadence. also, obviously, a miracle on this earth. not only is she here, that would be ample happiness for anyone, but she was blessed in her cradle too. bright and a beauty and a fierce drummer, she is ready to carry on the family mission of world domination through music.








 she loves snails...




 this is how i prefer to see my tree.











                                         "the moon has become a dancer at this festival of love"
                                                                         Rumi



cadencejubilate sent you a video: "Ave Verum Corpus K618 - Wolfgang Amadeus Mozart"

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the religious experience of "desire"
La Scuola Corale G. Puccini di Sassuolo accompagnata dall'Orchestra Filarmonica Emiliana, diretti dal Maestro Francesco Saguatti
Registrato nel concerto del 4 novembre 2006 nella chiesa di San Giorgio - Sassuolo (Mo)
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901 Cherry Ave, San Bruno, CA 94066

Monday, July 2, 2012

"every day is a new beginning"


Every day is a new beginning.

The secret of life isn't what happens to you, but what you do with what happens to you.

Help other people to cope with their problems and your own will be easier to cope with.

Never use the word impossible seriously again. Toss it into the verbal wastebasket.

Self-trust is the first secret of success. So believe in and trust yourself.

Stand up to your obstacles and do something about them. You will find that they haven't half the strength you think they have.

Joy increases as you give it, and diminishes as you try to keep it for yourself. In giving it, you will accumulate a deposit of joy greater than you ever believed possible.

How you think about a problem is more important than the problem itself - so always think positively.

''Keep your hands open, and all the sands of the desert
can pass through them. Close them,
and all you can feel is a bit of grit.''

Taisen Deshimaru





 Cadence at the beach with open hands.



"dumb paws"

   i am WORKING on staying positive and productive today, and on this day it is hard work. i have "severe peripheral neuropathy secondary to EDS" in all 4 limbs. i often refer to my hands as "dumb paws", because they don't follow directions nowadays. in fact, they've been deteriorating for at least 15 years, so it was gradual the way they stopped obeying orders. i love to write, but that's hard enough right now with half-a-left-hand. i can't do much, but i now appreciate what i HAVE been able to do with them. i love to create, and i am dead in the water due to the latest round of injuries. *  in my mind i am back at the zebra bar, trying to come to terms with today. lonely, sad, and feeling very helpless. i do not do "helpless" well at all.


       this brace is permanent. the reconstruction surgery eventually failed, due to a re-injury a year ago which has me trapped on our second floor, and this is a dumb paw. it has been since i broke & mangled it in 7th grade gym class, doing something that no zebra should be asked to do. that was my introduction to RSD.  meh, it's better than it was then, but not by much. i was doing "okay" with this. i've been meditating for 35 years, and as i'm allergic to all opiate pain meds, it's a good thing. i manage how i handle the pain of living at a level of 9, presently. i'd like to get down to about a 5. i could not only function but groove, then. i'm not looking for miracles any longer.




   this is my left "paw". a torn flexor tendon and pinched blood vessel in the dislocation of my wrist: caused by picking flowers about 3-4 weeks ago, outside in my powerchair, in our own yard.


   barely showing is the brace that i am wearing. i very fortunately avoided surgery on this one, just 2 weeks ago! incomplete rupture of the tendon. just baby it and let it heal. oh, yeah, that'll happen.









   this is my latest, my right "paw".  i thought i had a dislocated pointer finger that wouldn't go back right, so i went to the ER last sunday. caption: " # 327: you know you have EDS when: you wake up with a dislocated finger for no apparent reason. i want ring splints!! more attractive and comfortable than tape!!" (or what tape does to zebra skin).

    at least i can still hitch hike, but that's about it! (i have my towel and my guide). i had two broken fingers and a broken wrist!! NO idea how i did it!! i have had to scramble just to figure out how i would get to the bathroom. my powerchair is downstairs; the stairs i usually fall down when i'm trying to go from up here to down there, mostly for doctors' appointments. i've been trapped upstairs for a whole year. used my awesome Pilot walker to get around up here, but i fall ALL the time. now i'm scooting around backwards in my rolling walker with the seat, scraping my one "good" ankle as i learn to maneuver it, and trying not to tip out onto my face as i have no balance. rigging a lap belt is next!

                                                                                                                       
 



 

 "THE JOURNEY BETWEEN WHO YOU ONCE WERE, AND WHO YOU ARE NOW BECOMING, IS WHERE THE DANCE OF LIFE REALLY TAKES PLACE." 





 



Sunday, July 1, 2012

"that way, gogo!"

posted a video for my RSD girls. i'll sing it for you soon, i promise.                                                               
   that "dislocated finger" that was bothering me turned out to be two broken fingers and a broken wrist. thanks, neuropathy, i didn't know! now my left wrist is in a brace and my right hand is swathed to the fingertips in a cast. fortunately we have an air conditioner in the bedroom, so i'm not melting. i am now safely getting around upstairs by scooting backwards in my rollator (rolling walker).
   this time last year, i was just beginning to walk with it again, after arduous ankle reconstruction and a series of injections in my sacroiliac joints. photo is from last year on 3 july, when i pushed my granddaughter Cadence on it all day. "that way, gogo!" whatever it takes, baby! we had so much fun. i couldn't move for days, of course. who cares?? if indeed that was my last day walking, then i went out with a bang.
   i've been in the powerchair for 5 years, but i'm lucky that i ever walked at all. thus i am "gogo", Cadence being 3 1/2 and only knowing me in the chair. she climbed right up in my lap and said "go! go!".
    i love being "gogo" to this little muffin!
this is how we roll!

cadencejubilate sent you a video: "Celtic Woman - Isle of Inisfree"

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Purchase Info and Tour Dates: http://www.celticwoman.com/

Celtic Woman 2005

Song: Isle of Inisfree
Singers: Ă“rla Fallon
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901 Cherry Ave, San Bruno, CA 94066

Tuesday, June 26, 2012

house of cards

   i can't decide if this is a good day or a bad day. awoke with a dislocated finger on my "good at the moment" hand, which kind of ruined my day. storms going over are not helping me feel any better. i feel very lonely and isolated today. just wanting to move to a housing type situation, right now, which only happens to me when i am really depressed and frustrated. i love my house and my family, but i can't be a part of anything or just enjoy being with them. i am stuck upstairs in my house, with no help right now. trying to do laundry so i have something to wear to a wake on thursday. it's everything i can do to get the clothes moved to the dryer.
   i'm so frustrated that i can't even fold clothes or clean out my closet, etc. i was supposed to have my first Radio Frequency Ablation of my left sacroiliac nerves today, so i cleared my schedule. it got postponed for two weeks, which puts off the right side another two weeks. now i have this clear time, which i very rarely have, and i'm not using it to recover. lots of letdown today, i was so looking forward to getting it over with and being on the way to relief. now i will lose the whole month of july to the two procedures.
   another "zebra" friend of mine gave me a link to affordable ring splints for my fingers. i am supposed to go to a PT or Physiatrist and get custom bracing, but i don't know when that will happen. one more thing that got postponed because of the RFA change. i really should learn to play dominoes, while my life crashes around me like them! i will probably order one or two splints out of my next disability check, while i wait to get to the "experts". i'll hold my breath for the reimbursement, along with the ankle brace i had to buy. i need what i need, when i need it. i have my finger taped up, and DREAD taking the tape off, because half of my fragile EDS skin will come with it. can't keep taping, so i'll have to choose the worst finger joints and get them done myself, then wait for the rest to be covered by insurance, i hope.
   every day that my eyes open is a good day. however, john and i are just so frustrated with things getting rescheduled all the time. people have no idea just how carefully this medical house of cards is stacked. one thing changes, and the whole things falls down with a "whoosh". now i'm lying on the floor surrounded by the cards that were so difficult to stack, wondering how i will get them and myself up again.

Sunday, June 17, 2012

knock me down again, gravity!

keep knocking me down, gravity. i will rise again, every time! it's father's day, and i miss my "Daddy". always. fell again this morning, hit the hand that's already in a brace from last week. refuse to spend two nice sunday afternoons in a row at the ER. we had a nice brunch that john and the Chap cooked together, with lots of bacon :)  they're outside playing now. i'm inside, not daring to move much, nor able to. hit the back of my head on the TP holder- owie. i never thought i'd say this, but i miss my walker! being back on one crutch is being right back where i was, falling multiple times a day. good thing that Bumbles bounce, but i'm making my guardian angel work triple overtime lately. still, how can i keep from singing?

Friday, May 4, 2012

welcome back, my zebras and friends


   hi friends. i'm back, after a long break. someone stole my medicine sister blog and has been posting on it as me, i apologize. i will be shutting it down and concentrating on this one. i spent a long winter wrestling with health challenges, and health CARE challenges, and i know i'm not alone in that!
   may is EDS awareness month, and i thought it was the best way to jump back in. why the zebra? well, in medical school, doctors are taught "if you hear hoofbeats, look for horses, not zebras". we ARE the zebras. i'll be posting some info this month, but as usual the focus will be on me, me, me ;)  and my musical weirdnesses.