"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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cadencejubilate has shared a video with you on YouTube: Celtic Woman - Isle of Inisfree Purchase Info and Tour Dates: http://www.celticwoman.com/ Celtic Woman 2005 Song: Isle of Inisfree Singers: Órla Fallon
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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.

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?

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