Aa
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
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
So very glad to see you back.!!!! But, so sorry that you have had such a horrible year, and it must have been the challenge of your life, or one of them .....!!!
Things have been quite busy for me, as you probably know. Wow, can't believe it has been 5 years since I have been on this forum. You were one of the first people that I talked to you.
So, welcome back , and hoping you stick around this time.
(((HUGS)))
nice to see ya,
Candy
Things have been quite busy for me, as you probably know. Wow, can't believe it has been 5 years since I have been on this forum. You were one of the first people that I talked to you.
So, welcome back , and hoping you stick around this time.
(((HUGS)))
nice to see ya,
Candy
Glad to see you back you have been missed around here. Sorry to hear bout the ankle but glad you are on the mend.
I am on tysabri too just had #11 on thursday feel no different but least not worse.
Looking forward to seeing more posts from you
Take care
Kat
I am on tysabri too just had #11 on thursday feel no different but least not worse.
Looking forward to seeing more posts from you
Take care
Kat
Hooray!!! Quix is back!!
We have SO totally missed you. So sorry to hear of your long & painful journey, but so very happy things are on the upswing finally.
We'll anxiously await those pearls of wisdom, and meanwhile we'll be happy to settle for your funnies.
So please, please don't disappear again.
We have SO totally missed you. So sorry to hear of your long & painful journey, but so very happy things are on the upswing finally.
We'll anxiously await those pearls of wisdom, and meanwhile we'll be happy to settle for your funnies.
So please, please don't disappear again.
You made my day , to hear from you ... nix that you made my week...
And for those that don't know you your sense of humor is priceless
I'm still in that darn limbo land, however it was with your guidance that I move on to an MS Specialist and atleast the Dr says I do have Demyelination disease.. SO it really is in head after all these years..
Your friend,
John
And for those that don't know you your sense of humor is priceless
I'm still in that darn limbo land, however it was with your guidance that I move on to an MS Specialist and atleast the Dr says I do have Demyelination disease.. SO it really is in head after all these years..
Your friend,
John
Its great to see your back. I have missed you greatly!!!!!
Hot dignity dog! She's back!!!!!!!!
Hot dignity dog! She's back!!!!!!!!
Wow! I think it's really her! ((((((Qqqqqquuuuizzles)))))) you have been missed here, young lady! Thanking God you're back (for your sake and ours), not to suggest that the current purple flower crop hasn't been yeomanlike in your absence.
COMMUNITY LEADER
Hiddie ho Quix,
I have a grin from ear to ear.....err not that your woeful story of a spectacular fall is something to grin about, its just the way you tell your stories, that always brings on the grinning like an idiot thing. lol i've still got your story of racoon's stealing knickers off the line in my head :D
I'm glad your here once again, to impart your wisdom, insight and wicked sense of humour on us............you have been missed!
Hugs..........JJ
I have a grin from ear to ear.....err not that your woeful story of a spectacular fall is something to grin about, its just the way you tell your stories, that always brings on the grinning like an idiot thing. lol i've still got your story of racoon's stealing knickers off the line in my head :D
I'm glad your here once again, to impart your wisdom, insight and wicked sense of humour on us............you have been missed!
Hugs..........JJ
Welcome back.
You have been missed a lot by myself and the others here. It just hasn't been the same while you were gone. Not that others didn't step up and help people with their problems, or tell some funny things. It is just that you seem to bring a quality of insight in a delightful way that others just don't have.
Again Welcome back home!
Dennis
You have been missed a lot by myself and the others here. It just hasn't been the same while you were gone. Not that others didn't step up and help people with their problems, or tell some funny things. It is just that you seem to bring a quality of insight in a delightful way that others just don't have.
Again Welcome back home!
Dennis
I haven't checked in for a little bit - I guess today is my lucky day! Hopefully, Laura said, "Hi!" to you from all of us when she was out in the PNW. :-D
Sorry about your leg and your inpatient stay, but glad to see you back on the forum. I hope you stick around for a little while - you've been missed.
If you want a quick catch-up on me - I'm currently on LTD disability & waiting for SSDI approval. I stopped working the end of May. Now not only do I have a diagnosis of MS, I have systemic scleroderma, carcinoid syndrome, & some other medical issues going on with me. Down from about 120lbs to 85lbs now. I basically live at the doctor/hospital or my therapist's office. I've had almost 100 apppointments so far this year. And I just started taking Octreotide injections a month ago for the carcinoid cancer. I'm waiting for final approval to go to Univ of Iowa for the gallium 68 scan for further determination of the progression.
Welcome back! -Kelly
Sorry about your leg and your inpatient stay, but glad to see you back on the forum. I hope you stick around for a little while - you've been missed.
If you want a quick catch-up on me - I'm currently on LTD disability & waiting for SSDI approval. I stopped working the end of May. Now not only do I have a diagnosis of MS, I have systemic scleroderma, carcinoid syndrome, & some other medical issues going on with me. Down from about 120lbs to 85lbs now. I basically live at the doctor/hospital or my therapist's office. I've had almost 100 apppointments so far this year. And I just started taking Octreotide injections a month ago for the carcinoid cancer. I'm waiting for final approval to go to Univ of Iowa for the gallium 68 scan for further determination of the progression.
Welcome back! -Kelly
Dr. Quix Medicine Woman.
Well.......it's about time!
Soooooo glad you're back.
Well.......it's about time!
Soooooo glad you're back.
Wow! Just sitting down with my morning coffee and BAM! Look who's here!
Quix, I've been coming to this forum for three years, but only got around to signing-up/participating this past March. So, while we've never interacted directly, I'm as thrilled to see you here as the 'old-timers'.
However, I'm not so thrilled about your crash-course in letting the left leg know you remember it's there too! Like a bad parent, I also lavish attention on my right leg - noting it's every daily hissy-fit, catering to its every whim. Looks like I should show the left some love - I've no desire to hear anything remotely approximating pop, pop, pop, pop, and snap. (Now the rice crispies slogan just seems menacing!)
I am delighted 'plain old' citizen Quix is back in town. I find my own participation comes in waves, but I keep washing back up on this little shore. I hope you're able to relax and hang out with us on the beach for a while.
-Imm
P.S.
So glad you got that intensive support in hospital. But, don't do improving too soon; that Franken-walk could come in handy in about 8 weeks' time...
Quix, I've been coming to this forum for three years, but only got around to signing-up/participating this past March. So, while we've never interacted directly, I'm as thrilled to see you here as the 'old-timers'.
However, I'm not so thrilled about your crash-course in letting the left leg know you remember it's there too! Like a bad parent, I also lavish attention on my right leg - noting it's every daily hissy-fit, catering to its every whim. Looks like I should show the left some love - I've no desire to hear anything remotely approximating pop, pop, pop, pop, and snap. (Now the rice crispies slogan just seems menacing!)
I am delighted 'plain old' citizen Quix is back in town. I find my own participation comes in waves, but I keep washing back up on this little shore. I hope you're able to relax and hang out with us on the beach for a while.
-Imm
P.S.
So glad you got that intensive support in hospital. But, don't do improving too soon; that Franken-walk could come in handy in about 8 weeks' time...
I am so glad you posted and that you are back! I started up with stuff in January (also had trigeminal neuralgia January - March -- praying it is over for good -- and have right side issues, amongst other things). I have perused your health pages a lot from here in limbo, and have wanted to say THANK YOU and am so glad I can now! (yes, that was a loud voice).
I love your sense of humour ... even your post today -- I'm finding humour helps a lot in keeping fear at bay with all the wacky stuff going on. (Although it also makes neurologists suspicious :-P).
I'm very glad for Terry the trash guy, and how wise you were to trip on garbage day :-).
Welcome back!!
I love your sense of humour ... even your post today -- I'm finding humour helps a lot in keeping fear at bay with all the wacky stuff going on. (Although it also makes neurologists suspicious :-P).
I'm very glad for Terry the trash guy, and how wise you were to trip on garbage day :-).
Welcome back!!
I have missed your wonderful, self-deprecating humor. You make the most awful situations entertaining, but I'm sorry I had to be entertained at your expense in this way. You are so danged tough!
Welcome back to busy lady status!
Welcome back to busy lady status!
WOW what a pleasant surprise to find Quix on the forum!! Not one of the many, many old posts that pops up regularly with all your wisdom, BUT you self in "the now"!!! (sorry don´t know if my English is right).
Few weeks ago I was reading such a long a great post from you about MRI´s, leasions and symptoms. I was wondering if I should show it to my Neuro at some point.
I´m sorry about what happened to your leg, but glad you are getting better.
It is SO great to have you back!!
My best,
Dagun
Few weeks ago I was reading such a long a great post from you about MRI´s, leasions and symptoms. I was wondering if I should show it to my Neuro at some point.
I´m sorry about what happened to your leg, but glad you are getting better.
It is SO great to have you back!!
My best,
Dagun
So sorry to hear about your accident, but I m glad you are on the mend. I too am a newbie in your absence, and have never had the pleasure of interacting with you, but I am glad you are back and look forward to reading your new posts.
With warm regards,
Barb
With warm regards,
Barb
Oh, I am still a card-carrying member of O&O-A. Just pressed for time ... way too much to be healthy ... as of late.
God bless!
God bless!
Although you felt that lost your MS mojo (who wouldn't blame you?), I have to state that your MS mojo is historical. That mojo just so happens to be the best informative thoughts, easy to read dissertations and educational health tools EVERYONE has either read 10 times over, referred others to understand what may be going on with their own body. I can't thank you enough for the time, effort and careful deliberations that it has taken you to put it all together.
I may not know you well (although it feels as though I do), but YOU are certainly are admired for your wit, intelligence, expertise and most of all, compassion. I can't thank you enough for all you have done for everyone.
I'm so happy you have returned as so many here feel the same way.
I can't believe your event and how fortunate "Terry" the Trash Guy was around at the right time.
I'm happy to hear that after rehabilitation, you are stronger and that Quix will definitely help your self esteem!
You will notice I'm quite verbose myself. LOL.
Welcome back and glad you're here!
Lisa
I may not know you well (although it feels as though I do), but YOU are certainly are admired for your wit, intelligence, expertise and most of all, compassion. I can't thank you enough for all you have done for everyone.
I'm so happy you have returned as so many here feel the same way.
I can't believe your event and how fortunate "Terry" the Trash Guy was around at the right time.
I'm happy to hear that after rehabilitation, you are stronger and that Quix will definitely help your self esteem!
You will notice I'm quite verbose myself. LOL.
Welcome back and glad you're here!
Lisa
You were sorely missed. Welcome back. Your story makes me glad I only have MS and Cancer.
Alex
Alex
Quix... I am a newbie here.
I am happy I have a chance to say "thank you" for all your previous posts in these boards! I have always been in awe of such a wonderful person taking the time to write all those wonderful articles and replys to so many. You will be timeless on these boards. A legacy! :)
Thank you for all your knowledge!!
I am glad u are back ... Nice to meet you!
Cann
I am happy I have a chance to say "thank you" for all your previous posts in these boards! I have always been in awe of such a wonderful person taking the time to write all those wonderful articles and replys to so many. You will be timeless on these boards. A legacy! :)
Thank you for all your knowledge!!
I am glad u are back ... Nice to meet you!
Cann
Mama Q!!!!
WELCOME BACK!!!
He ll we been tapping your old MoJo for years now! And, it was so strong and solid it's still giving!!!!
Will you be staying along with PT for strength?
We'll take you at any rate you can give Quizzlestix, Doc Q, Mama Q Quixaterrifica! haha (ok, that's a new one).
oxoxoxoxoxo MISSED you much.
-Shell
WELCOME BACK!!!
He ll we been tapping your old MoJo for years now! And, it was so strong and solid it's still giving!!!!
Will you be staying along with PT for strength?
We'll take you at any rate you can give Quizzlestix, Doc Q, Mama Q Quixaterrifica! haha (ok, that's a new one).
oxoxoxoxoxo MISSED you much.
-Shell
Yeah, she's back.............we've missed you...................you bring smiles to our faces just being here!
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.
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.
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...
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