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.

down, but not out!

hello, all my dears. i apologise for being missing in action lately. i had a fall last monday, in the doctor's office of all places, and i've been in a body-wide flare of burning pain ever since.
i'm doing a bit better now, and looking forward to visits at the weekend! one from my brother and sister-in-law, who moved to NC a few years ago. that will be sweet! i haven't seen them in a while. they will become gradparents too, in december, of a little girl who will be called ashley. i have a little T-shirt for the baby which says "my heart belongs to grandma and grandpa". i'm so happy for them, because it's SO much fun!
the other will be from a certain short person i know who likes to ride in my lap ;) she will be disguised as a pirate, so i will prepare for us to be boarded and pillaged!
i have a small stuffed hello kitty in a devil halloween costume, which is perfectly "spooky" for her. i asked my daughter a very silly question, which was "what kind of candy should i get, in preparation to be pillaged?". i could hear her laughter over the computer, i swear, when i read the reply "she will eat any candy she can get!". she loves granddad's chocolate biscuits, too, so some of those might fall into her bag of treats. she'll turn three in a few weeks, so any sweets she gets, she likes :)
i've been on a beethoven's ninth kick, i'm not quite sure why. even now, it's running on a loop in my head. i do love it so, that  i don't mind. plus it saves electricity from running the stereo! i am making progress in my study. slowly. turning it into the proper SteamPunkZenRoom that it deserves to be. it will be my library, music room, my conservatory, my storage, display, and workroom, my laboratory, and my getaway all in one place.
i am working on my laptop, so that i can post music and videos. soon i hope, it will be brought back to life! in the meantime, from "gangs of new york",  
"i leave you in the grace and favour of the Lord!"
ruthellen

FW: the questions are answered. RSD.

sorry to forward the post to my medicine sister blog. i can't cut and paste on my phone, so this is the only way i can post all this again to you, friends of the forgotten diva. thank you so much. i'm listening to a lot of old Bridgewater State University Alumni Chamber Choir and Jubilate Chorale right now, because i'm on them, to remind myself of what i CAN do.

---

From: medicinesister@live.com
To: medicinesister.gogo@blogger.com
Subject: the questions are answered. RSD.
Date: Tue, 11 Oct 2011 14:53:44 -0400

green blessings, my friends. i've been doing lots of research this weekend, with the special help of an RSD advisory group on facebook. i am discovering the pieces of the puzzle that have been missing for a long time. i am now sure that i have had RSD in my right knee, affecting me body-wide, since reconstruction surgery in 2001. i may have had it since 1995 or before!! i've had so many undiagnosed and misdiagnosed things over the years, that this doesn't even surprise me.
now that i know what i'm dealing with, i can establish a safe, comfortable, and enjoyable life around it. it has been the not knowing that has been so demoralizing all along. all the unexplained symptoms, which, since the doctors couldn't diagnose them, were pushed back onto me as psychological at best and imaginary at worst. dammit, i'm not in a powerchair because i'm anxious!! i had a neurologist at beth israel tell me that i was, though.
so the questions are answered, i have more acronyms to add to my medic alert page, and i'm not being thought of as crazy by my new neurologist, specialist in RSD at MGH (mass general hospital). i can play boggle with all my acronyms ;) what can i spell? that'll be fun.
so, herbally speaking, i am researching specific herbal remedies, but i'm not sure i can do better than my usual repertoire of pain-relieving herbs and essential oils. i just won't be hesitant any longer to use them when i need them!! i will share my favorite combinations for body pain and for my migraines in my next post. i promise i will put on my "concentrating cap" and post all the promised recipes, including the cold and flu tea (sage tea).  
love and light to you all!
ruthellen

how can i keep from singing?

i sent the video of the rutter, because it's autumn and it suited my mood, which has been very down. i have just been diagnosed with RSD, aka CRPS, in my left foot. it is a painful, progressive neurological condition. this means i will never walk again, so my powerchair is my new BFF. it was just confirmed yesterday, and i've been having a hard time with it, obviously. i live in a great deal of pain, but this is a new level of hell. i have been trying to keep a balance of mourning and gratitude. i spent last night with dear old ludwig van and his 9th. it is always cathartic for me. i had to let myself feel the bitterness and anger, then let it be carried away on the "ode to joy"!  so i have gotten back to "normal" today, my normal which is to be Pollyanna. thus the other video, "how can i keep from singing?" that's who i really am. i can sing sitting down. i can have love and life and joy in a wheelchair. i am lucky to have all the modern mobility aides and treatments, as well as access to the finest doctors in boston. i hope to be back singing with Jubilate Chorale in january, if i can arrange transportation. that is the plus side of not being able to have the surgery to repair the torn achilles tendon. i won't have to miss another spring semester for surgery and grueling rehab, as i did 2 years ago! rejoice with me, i have love for life, and music keeping me from going over the cliff.

cadencejubilate sent you a video: "Angel Voices - How Can I Keep from Singing"

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cadencejubilate has shared a video with you on YouTube: Angel Voices - How Can I Keep from Singing From the program "Titchmarsh on Song" (1992), the St. Philip's Choir (better known as Libera) sings this tune popularized by Enya. Daren Geraghty is joined shortly by Glen Tillen and Oliver Putland and then the rest of the choir.
© 2011 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

cadencejubilate sent you a video: "Angel Voices - How Can I Keep from Singing"

	help center | e-mail options | report spam
cadencejubilate has shared a video with you on YouTube: Angel Voices - How Can I Keep from Singing From the program "Titchmarsh on Song" (1992), the St. Philip's Choir (better known as Libera) sings this tune popularized by Enya. Daren Geraghty is joined shortly by Glen Tillen and Oliver Putland and then the rest of the choir.
© 2011 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

cadencejubilate sent you a video: "Rutter - Blow thou winter wind - The Cambridge Singers"

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cadencejubilate has shared a video with you on YouTube: Rutter - Blow thou winter wind - The Cambridge Singers .
© 2011 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066