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147426 tn?1317265632

Hi, Folks!

Yes, I am still alive and kicking (sometimes on purpose, but, more often, involuntarily).  I am so ready to get back onto the forum, but feel like I have lost my MS mojo - like perhaps everything has changed in the last year.  I took a sabbatical from here from sheer burnout.  I was tired of considering MS every minute of every day.

The last year has been uneventful.  Really quite nice.  I have played around making fiber jewelry, knitting and goofing off.  I still have the nasty fatigue, weak right side, incontinence (I'll be commenting on Laura's Botox soon), trigeminal neuralgia, and spasticity, but the Tysabri seems to be keeping it all in check.  I asked for some physical therapy last spring to help my increasing weakness.  That, apparently was my mistake.

On May 30 while getting into my car to go to PT I tripped - I wasn't paying attention.  I crumpled onto my left leg and went down.  For those of you (most I assume) who don't know me, I have managed to keep all problems neatly in my right leg, thus having a stronger left leg to depend on.  I heard pop pop pop pop and then a snap.  Didn't really feeI anything except a sinking feeling in my stomach as I sank.   I  lay there in the garage, on my back, cursing the gods and counting the spider webs in the rafters.  Our garage in down a deep slope, and I was near the side the car.  Not a soul around.  I could inch toward the door doing a little caterpillar walk between my shoulders and bum, but it was slow and I was in a little shock.  My mom was home, but is deaf as a post and my sister (as usual during emergencies was on vacation).  So, despite my cursing at them, the gods had deemed this to be recycling day.  I heard a truck lumber up my hill so I waved my arms as high and erratically as I could hoping to catch the driver's eye.

Bingo!  Terry, the Trash Guy, was wonderful.  He called 911, got my mom, found my phone and purse, told me some jokes and we had a little party waiting for EMS to arrive.  Extricating me from the wedge between the car and the side of the garage was tricky, but we managed with me executing some positions that can't be shown in polite society.  The ER confirmed that I had indeed fractured the left ankle just above the malleolus (ankle bone)  They tried to put me on crutches to send me home.  Yeah, right!  The pain in my ankle invoked the spasticity in my right leg into high performance.  I stood there, crutches in front with my right leg married to the spot it was on.  Swing it forward?  Not a chance in h*ll.  A statue could not have been more immobile.  I had a dozen people in the ER urging me on as I propelled myself not at all.  "Try!", they cheered.  My right leg just laughed and dug in deeper.

Alas, they would have to admit me, as I was now as mobile as a beached jellyfish.  I had it surgically plated the next morning.  Then we all discovered that my right leg would not allow me to stand and transfer.  So, they told me I was off to a skilled nursing facility.  My self-esteem was nowhere to be found.  In the end, they found a spot in the hospital's highly regarded inpatient rehab facility.  I was trundled off there, and spent three weeks in boot camp.  Three hours of high intensity PT and OT daily.

This was a blessing in disguise.  I had let myself become horribly deconditioned and the workouts were great.  What wasn't great, however was the skin eruption I had to the antiseptic they had painted my left lower leg with during surgery (chlorhexidine, Hibiclens).  Over the first week my skin bumped up, blistered, thickened and blackened under the spint and ACE wraps.  When the itching was unbearable I made them remove the splint and we all gazed in horror on the sight of a leg that looked like it had gangrene (NOT an exaggeration).  Doctors would come in to see it and involuntarily step backwards.  The rash was so deep that I now have cutaneous nerve damage and scarring.  I am still peeling from it.  Maybe I'll load some pictures of it for those of you who like looking at gruesome things.

So, after three weeks, I was released from the hospital a much stronger person.  My legs are coming along nicely, though I still have a Frankensteinian quality to my walk, I am upright and without need of assistance. The fractured ankle is still extremely painful and we are working to prevent a chronic pain complex from developing.  I am lifting free weights and now that I am bicep curling 3 pounds I feel ready for Venice Beach.  That's a whole different story.

So, even though I don't feel I remember much about the science of MS, I am back.  I'll be catching up on the last year's info, but I wanted to step in and say "hi".  I have missed you all and look forward to meeting those of you who have joined more recently.  Maybe, eventually, I will be able to remark sagely and let pearls of wisdom drop from my lips, but for now - it's just plain old Quix.

Still President and Founder of the Support Society for those who talk too much ON-AND-ON ANON.
Quix
45 Responses
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293157 tn?1285873439
Hi hon... so nice to see you back online.  I've not been on as much as I have been looking and checking online.  It really has made my day to see you back here and looking forward to seeing you on here.  Take it easy and talk soon

hugs
wobbly
Helpful - 0
147426 tn?1317265632
It's so good to see you guys, too and know that you're still here.

Quix
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1140169 tn?1370185076
WELCOME BACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Mike
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333672 tn?1273792789
Hi Quix,

It's wonderful to see you back on the forum. I've missed your presence and your insightful and compassionate posts (and from all the posts above I can see I'm not alone). I'm sorry to hear about your ankle and ensuing ordeal, but glad for the silver lining of helpful PT.

sho
Helpful - 0
Avatar universal
Hi, Quix:

I am new around here. Was Dx on 5/13/13. Like many I did a lot of research when initially Dx so I could learn all about this disease. In doing so I came across much of your wisdom and words of encouragement to so many and for that I am grateful. It is fantastic to see you back.

Best,
Eric
Helpful - 0
Avatar universal
Hi Quix, I don't really post much but lurk every few weeks.

Sorry to read about your left leg.  Surgery, and an infection / reaction on top of what you already deal with? :(

Must be something about left legs...

In July I injured my left leg from a fall trying to get into my car during a huge rainstorm (chipped fibula bone, bruised bone, but no break) and it ended up getting infected, and turned into cellulitis!  Which then turned into multiple ronds of antibiotics and multiple doctor follow ups to ensure it was getting better. but I avoided getting admitted.

My ankle is still swelling a bit, and has a weird bruised / bump to it, and itches slightly but I'm doing well :)

(Myeloma is still quiet and in remission, though my blood counts will move around a bit just to remind me it is still there...)

Helpful - 0
739070 tn?1338603402
WELCOME HOME!!! We've missed you ,but as others have said your legacy lives on. Cant wait for more Quix tlaes.

So sorry to hear about your ankle but am glad you are ready for Venice Beach!!

Gotta run. Time to leave for Tysabri, dose 25 and still JC negative!! :-)

Welcome back Mama Quix!!

Snoopy dance and ice cream coming your way!!!

Ren
Helpful - 0
1760800 tn?1406753451
Welcome back!!

I believe your departure coincided with my dx but I have read many of your posts and your knowledge has helped me greatly -  

So sorry to hear about your ankle but so glad to hear that you were found quickly and are on the mend!

Tracy
Helpful - 0
Avatar universal
OMG!!!  You're backkkkkkkk!!!!!  And as usual you tell the best stories I've ever heard, though it all did sound quite painful!!!  I am very happy the Trash Guy rescued you!

I've thought of you often and when I lurk I always check to see if you've been on here.

Please take care of yourself, I'm very happy you're back, I've missed your wonderful sense of humor and your big heart!!!

I'll have to start lurking more often...haha

Hugs,
doni
Helpful - 0
1437229 tn?1296070020
Hello Quix.

I had to look twice to make certain the date on your post was current.  We have had several of your older posts pop up with some of our new members asking questions.

You can surely feel the love and concern for you, and our thrill at your return.  I agree with Laura that you must not let us fatigue you.  Please take time for yourself.  Welcome back.

Most sincerely,
Beth
Helpful - 0
5887915 tn?1383378780
I'm sorry to hear of your ordeal but glad you are doing better now. I'm very new around here but I have been reading so many of your helpful health pages for about a year now. I especially liked the thread about what Neuro's often say which had me laughing so bad I was in tears. I use the MRI translation as a guide also.

You have given your medical knowledge to others by making things understandable but also with great humour & compassion. Thank you for this great gift.

I am in limboland which is not made easy by my already existing medical conditions & that I've been on Rituximab for five & a half years. I have been guided by a lot you have written previously & can only say WELCOME BACK & thank you for all the help you have given me without your knowing.

Take Care.........karryon.

Helpful - 0
3079363 tn?1363273715
Quix, I'm so glad you're back! I've been coming here for about a year and a half. I have devoured the health pages while in limbo land! Thank you so much for all of your input on this site. It has really helped me to understand what was happening with my body. Unfortunately, I was diagnosed last September so I guess I'm officially part of "the club".

I am so thankful that you are still kicking! No pun intended. I often wondered about you and prayed that you were alright. Your sense of humor has often brightened my day. Welcome back!

Blessings,
Colin
Helpful - 0
572651 tn?1530999357
And you all thought I couldn't keep a secret ----

I have been wanting to scream from the rafters that we had a special appearance coming and been waiting for the time to be just right, so here it come ....  

Guess what, everybody -  Quix says she misses us and is going to come back home to where she belongs!!  

Phew! I feel better now that I can share that with all of you!!! :-)

Love you, Quix  -it made my night to see you finally found your way home.It's about time but this time around we have to have you promise you will take it easy and not let us wear you down.

~Laura

PS I told you  EVERYONE would be excited to see you back...you've been missed even by people who didn't know they were missing you.
Helpful - 0
4943237 tn?1428991095
Absolutely wonderful to make your acquaintance Quix.

I'm another limbolander and/or a person with an obscure thing that most people have never heard of (including most doctors) - gluten ataxia.  

By the way, I think your health pages are priceless!!  :-)

Cheers

Poppy
Helpful - 0
147426 tn?1317265632
Good to meet you again and thanks for the kind words.

Moki - No, THAT is the most mindless and cruel diagnosis ever given.  (Sorry, Johnnybear)  "You have an undiagnosable neurologic illness so we need never look at you again.  We need not even try to consider your problem and we will remove all hope from you so that you look no further (and possibly prove me wrong)."  Unless that guy know all there is to know and has consulted some of the best minds available he is a horse's patoot!   It makes me so angry I can't even remain sitting here!

Q
Helpful - 0
281565 tn?1295982683
Wow Mama Bear, it's so wonderful to see you on here!!!! I don't post much these days but do pop by to see how everyone is doing and so glad that I did today!!!! To say you have been missed is truly an understatement!!!!

Sounds like you had a rough but interesting year but knowing you, you will have handled it with the toughness and humor that is in you.

I'm declared undiagnosable with the specialist saying he's sure it's in my central nervous system but thinks I have something knew, lucky me. lol He figures it will be years or never for me to find out what it is and no one else will now take me on so that's where I am.

Anyhoo, as another member of O&OA, I'll cut this short but leave saying how happy I am that you are back!!!!!

Moki
Helpful - 0
1734735 tn?1413778071
Is there a doctor in the house? By golly there is...again, finally. A huge welcome back dear Quixy.

We all think we're experts around here but sadly we're all just full of $hit! You have been sorely missed for your insight and expertise.

Yeah, MS is funny disease until you fall over and break your good ankle. Yikes, I'm sorry to hear that but glad you're on the mend.  

So in the words of Austin Powers I think you're shagedelic baby! You're switched on! You're smashing!

Blessings
Alex
Helpful - 0
147426 tn?1317265632
Oh, my.....I am overwhelmed by your graciousness and enthusiasm.  I would like to respond to each of you individually, but know I won't have the energy at the desk.  Please know that you've buoyed my flagging mood.

A little info to answer a couple of questions.  I'm still on Tysabri (about 24 months now) and still JC virus negative.  A new 6 month check is still pending and I pray it remains absent.

I am definitely continuing PT for increasing strength.  As for my balance, I clearly need a new gyroscope.  I see walls, door jams and furniture as my moment to moment tools for course correction - like a participant in a great cosmic pin-ball game.  Can I call "TILT"!!?  Every time I have blown out an ankle it has been from getting into a semi-squat and not having the strength to support it.  Kudos for Kwarendorf's journal age on Exercise accountability!

HVAC - Oh, no!  The cancer is unfair and you should demand a "Do over".

Dagun - your English is wonderful.

Johnnybear - I feel an addition to Lies My Neuro Told Me coming on.  There is NO such thing as non-specific Demyelinating Disease!!!!  OMG!!  Has this guy never even looked at the Criteria for Diagnosing MS???  Did his squishy little gray thing finally make it to the treeline!  Think about it.  If you have the signs and symptoms of demyelination - however atypical - and you have ruled out all better causes, THEN the diagnosis IS MS!  There is no such fake, cubbyhole diagnosis for use by the neuro who lacks both a brain and a pair of balls.  Who thought up such a mindless, witless, gutless excuse for sitting permanently on the Fence.   Hmmm, have you seen a Tiddly Winks trophy in his office??

I love lobster......

Thanks again to all of you!  I hope I can interact personally with each of you in the coming days.

Quix

Helpful - 0
Avatar universal
Hi Quix, I am another newbie here and have definitely read several posts and pages from you.

I am glad that you have had a well-deserved break and your humour matches mine so bless you for keeping it alive in your posts.

I can't believe your leg! Oh my, thanks to Terry the Trash Guy! Thank goodness he noticed your flailing and waving.

I look forward to getting to know you better.

Corrie
Helpful - 0
1831849 tn?1383228392
The highlight of my Labor Day weekend! This is no mean feat, given that i have been stuffing lobster into my gob for the las two days!

Your departure preceded my arrival so we have never met. I'm happy to make the accquaintence of the Legendary Quix! Although after reading your tale I think we should call you Job!

We are happy for you to return in whatever capacity you choose :-)

Kyle
Helpful - 0
5538989 tn?1514398453
Hi Quix-

I am also a newbie and saw your information when googling and lurking. Thank  you for taking the time to help more people than you can ever realize.

I choose not to dwell upon MS too much and refrain from unnecessary research as I don't want MS to becoming my life, simply be a part of it. I completely understand your need to take a break and just wanted to simply say THANK YOU.

Best Wishes you've been missed by many and an asset to all!

Best Regards,
Lizzie
Helpful - 0
338416 tn?1420045702
I meant to say that you're seriously injured yourself twice with a sideways move. (What is that, laterally?) When I go over it's sideways in the exact same kind of narrow space. I always reach out and grab any wall available, but sometimes there's no wall. How do MS folks avoid that kind of situation? No room for a cane, can't get a chair in there...
Helpful - 0
338416 tn?1420045702
I'm so glad to see you here! Alive but not kicking - perhaps flailing weakly. I have been absent from the site for nearly a year, and just today decided to see what this phone would do.

It sounds like you needed a vacation from MS, or at least talking about it. I'm just horrified by the good leg breaking, the allergy to Hibaclens (who has an allergy to Hibaclens?) and the already existing problems making your recovery worse. PT folks seem to think that whatever physical problem you're having can be fixed with determination and exercise. Seems to come with the job.

PT has been good and bad for me. I got some last year for my weak right leg and balance issues. it helped me regain some confidence with my balance. It's been bad in that I now think I have balance. I've fallen over more since I had PT - at least twice where I just toppled like a tree.

The best advice was to raise my right toes. I have to consciously think to do this, but it does work. Sometimes. This last week it's back to folding by surprise. I'm doing great otherwise and have actually reduced or stopped some medications.
Helpful - 0
Avatar universal
Yeah, she's back.............we've missed you...................you bring smiles to our faces just being here!
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