Hurry Up & Wait

A few weeks ago I had to go to the pain doctor, and got some painful news (that's what they are for you know). I brought Sean the two year old I babysit. He was so excited when he realized we were going bye bye; grabbing his coat and shoes before Cuddles could change her mind. We even got to talk about the fact that we were ready....most of the way there.
Then we sat in the bare boring waiting room for a half hour. Sean didn't get it. He kept pulling at my hand insisting that I had made a mistake.
How could these four white walls, and line of straight back chairs be the infamous bye bye which he had hoped to include "ride the yellow car" at the playground, or seeing Ronald McDonald......
What a sham!
Finally the doctor came out and brought me back to burst my bubble in private. He basically was just straight with me; the pain I have I can expect lifelong. He basically said that there are things to make me more comfortable (like a fusion or traction, meds, alternative therapies......) but not to expect it to completely go away.
He did commend my determination to not take narcotics, and gave me a few more options. One thing he stressed as important for those with chronic pain stemming from neuro is to keep the muscles flexible, and loose. One way he encouraged me to do this is through Yoga.
He also gave me a script for a TENS Unit, which the rehab will teach me how to use. For those not familiar with TENS it send electrical impulses to the nerve to intercept the pain message. It works great for some people.....and God willing, I hope to be one of them.
I had to leave church in the middle of the message today so I could stand up because my back was cramping up. I thought previously that my pain and odd nerve sensations appeared worse after being in a car......but today I realized jeans are the more likely culprit.
Note to self: need more sweats
Anyhow, I have to admit I was bummed by some of the things my doc said, but in other ways he flipped on the green light to my life. Instead of giving me more things to wait for he said "this is your life", and now I must decide where it goes from here.
Like Sean, I have been in this big hurry to wait. Waiting for a cure, a therapy, the right surgery... and then my life could re-begin. You'd think I'd know when the wait was over, like there would be a big sign, like when the doctor entered the waiting room.
I expected this wait to end in a huge miraculous recovery. I know there is no cure, but for some reason I duped myself into believing "the next surgery will do it". The doc explained the next surgery might help.......but even so I would still have pain.
And then I sat back and took stock on how far I have come. I have had quite a few surgeries this year which have made a huge difference, just not the "no more symptoms" one I had expected.
So now it is time to move forward with what God has used this wait time to prepare me for.

I am starting slow with what God has already given me, because I do want to go on God's direction and not Queli's (my sense of direction has been shown to stink stating it mildly, and His is, well, flawless)
God has started so many things while I lay in wait, spoiling me with treasures I didn't know I would love before Chiari. And I haven't a clue what He has in plan, but honestly I don't need to know.
First things first, is to continue my volunteer work, and (drum roll please) I'm gonna complete my novel. Ya you heard it here first.
So starting this week I start going to leave the house two days a week, to concentrate on my book, and query letters.
Pray for me!
I'm all outta wait =)

Just Did It

So it's almost Wed and I forgot to update you all on the MSWalk.
I did it!
And I have been sleeping a WHOLE LOT since! =) (those with Chiari understand I am sure)

I got in the wheelchair three times, however, I did walk somewhere between 1/2 and 2/3 of the walk, which was a lot more than I thought I would when I woke up to rain.
My body ached even before I left the house, and I began to wonder if it was a good idea. I'm so glad that I didn't back out, because it was an awesome time.

I enjoyed the walk in the rain. That is something I haven't done in a while, but found peaceful. Not to mention it kept us cool (last year it was hot during the walk)

The only part was that last hill.

Ok so people that were there might be thinking "What hill?"

Believe me, there's a hill.

The very last stretch is on this slight incline...a slight incline that almost did me and my fresh scarred bac in. I was praying all the way up that I could walk it, and not collapse in front of the young cheersquad waving us in.

And what is that about anyhow, having middle school dance group at the end to remind all of us 30 somethings and above just how much energy has left our souls in the last 20 years as we clutch our chests, and try to act as if we are breathing normal as we hit the finish line full of bouncy, full of life, enthusiastic teens.

So anyhow, the event has passed in this neck of the woods, and I read somewhere that MS Society is about halfway to their goal of raising 1.5 million this year, which is awesome.

We really need to do something like this to raise $$ for Chiari research...

Take care of you,
Q

MSWalk

Ok, after much thought and prayer, I am still going to walk this Sunday.

No, I am not on some "nothing can stop me" mission; just following through with something I feel strongly about.



However, I am not going to walk anymore than my body says I can. Hopefully I will get through the entire walk, but even if I can't make it to West Patrick from the Middle School parking lot, I will at least be there to support someone close to me who IS walking, and is fighting a battle must more personal to her than it is to me.



If you would like to make a donation, go to the National MS Society website. You can donate directly or through one of the teams/individuals participating in the event. All the money goes to the same place, and will go towards research which will hopefully lead to a cure.

Cat N Mouse

I recieved these in an email and had to share it with you all. Hope it brightens your day, like it did mine.

Peace,

Q

Stitch by stitch

My alarm clock was set for eight, but my back had enough by 6am. After it's continuous nagging, I finally dragged myself out of bed at 7, wishing I was still taking those pain meds.
I stopped taking them this week, only to be reminded once again that narcotics don't rid you of pain, they just make you sleep through a bulk of it. And unfortunately, I couldn't stand a minute more of being unable to remain conscious for more than 10 minutes at a time.
So here I sit, unmedicated.
Actually the pain isn't that bad. They cut all the way to my spine a little over a week ago, and the resulting pain does not match a chiari or fibro flare. Isn't that interesting?!
I'm actually big on not taking pills, which has made this trip in life so much more interesting than if I had not been a drug counselor and seen one too many clients who once had a surgery, or injury and 10 years later were still trying to get off the prescribed meds.
I know I drive my docs crazy.
However, with a history of anorexia, I am not taking my chances on becoming a pill addict. And I am a believer in the addiction theories associated with eating disorders. Therefore I won't buy into the idea that some doctors have that it is safe to take these addictive pills if you really need them.
No one saw the harm in those first 10 or 20 pounds dropping either.

Anyhow, most Chiarians come in on heavy doses of pain meds, so only the best post-surgical meds are given for our surgeries, because many people with my condition have a high tolerance for meds. Unfortuantely, and fortunately I do not. So they knocked me on my butt.

Now that I am "waking up", I am realizing the MSWalk is just around the corner. I need to decide if I am still walking, and if so, I really need to figure out which doc I should get consent from. Hmmmm.
I have already heard from some, that I should throw in the towel for this year since I did just have surgery. However, last year I walked with Chiari, fibro, and undiagnosed tethered cord, and a horrible decompression that hadn't been fixed yet or cleaned from remnants of meningitis........
So I am thinking a little slice on the back isn't exactly an excluding factor from walking.
But we'll see. I get the stitches out today, so I will ask the primary care doc what she thinks. I am guessing she will refer the question to the surgeons, but who knows until you ask.
Anywho.... if anyone would like to make a donation for MS, my site is a click awayClick here to donate.
If you would rather donate through someone who is definately walking, I will post one of my friend's sites at a later date (once I know what it is myself)

And if you would like to walk there is still time to register for the April 6th walk in Frederick.....or in the area closest to you. Click here to register!

Take care of you,
Queli

I know I have been a bit of a hermit, but it is hard to return phone calls and email when you are sleeping all the time. But I did want you all to know that I do listen to my voicemail, read the emails, and actually do pick up the phone when I am awake!!!

So far from what I can determine, the surgery has been successful.
The goal was to relief symptoms below the neck......and although I can't report on spine pain (because the incision it quite painful itself), but I am hoping to throw out the infamous "butt peas" I have in the freezer that were used to try to calm the constant pain I have had in my tail bone for the last several years.
I can say that I have seen many dramatic changes, including not having to race to the restroom every 5 seconds, and the fact that I have normal feeling in my feet again.
It's pretty weird, since pain an numbness had become the "norm". I keep wiggling my feet and toes, shocked by the normal sensations of stretching my toes and such. It's so cool. Don't be shocked if you catch me playing with my feet at times, I am like a child that has just discovered she's got toes.
As for my body, it is tired and healing. I am just lying around letting God do His work from the inside out. A little tired of the sleep this all requires, but of course it is only temporary. Due to the heavy medications, I have in turn been provided some very vivid dreams to entertain me during this sleep-feast. Perhaps one or two will turn into a novel. =)
I can't say when I will have more periods of consciousness, but this is what I do know: I get the stitches out at the end of the week, and then start physical therapy in April. Right now I am not allowed to lift more than 3 pounds of strain at all.....and my back makes sure that I follow these orders precisely!!!
Which does break my heart when the little tiger I usually watch visits, and I have to have his mom pick him up so I can give and recieve hugs and kisses. He, btw, quickly made acquaintances with my walker, and began imitating me. He actually did a better job using it than me! lol
Anyhow, the zzz's are calling again. Thanks for your continued prays, and support.

Home Again

Hi all,
I have a lot to post but not a lot of time until pain pills take away my consciousness....
So I will just say, I am home, and doing well.
Thanks for all of your prayers and support!
Q