Sarah in Paradise

feeds@yuku.com (razzle5150) — Sat, 19 Dec 2009 01:37:26 GMT

Her daughter passes away

http://www.asap.org/forum/viewtopic.php?f=2&t=10799

Special Bonus to Help Column of Hope

feeds@yuku.com (babkane) — Wed, 16 Dec 2009 07:52:49 GMT

Column of Hope is a member of iGive.com. Please read the e-mail below and follow the instructions to help Column of Hope raise $5000 is 24 hours. Please feel free to e-mail this post.

Thank you!

Barbara

From:...

BBCA Special on Pedigree Dogs mentions SM

feeds@yuku.com (Betsy58) — Thu, 10 Dec 2009 06:06:11 GMT

I just saw on the Today Show this morning, a segment about a BBCA documentary about problems with breeding pedigree dogs. They were talking about the King Charles Spaniel, and the practice of breeding for a small skull, there by causing SM in some dogs. It was so sad to see these poor creatures suffering so needlessly for vanity's sake.

So, if anyone wants to know how we suffer, I guess we can tell them that we are like the King Charles Spaniel now.

Betsy

Great news!!

feeds@yuku.com (tiredmama) — Tue, 08 Dec 2009 22:14:36 GMT

I finally am doing better from physical therapy. I am off of my cane and have started land therapy and will soon be finished with aqua therapy. Also, I got the go ahead from my doctor to go back to work. I began by hunting through all the job sites and putting up a new resume for administrative assistant, when I discovered a new way to do this. I will be opening my own virtual assistant business in January. I can contract to do executive assistant jobs from home:) This will allow me to make...

Shop & Travel to Benefit Column of Hope!

feeds@yuku.com (babkane) — Sat, 05 Dec 2009 07:41:44 GMT

When you click on the iGive.com button below, you can download the toolbar (you can shop on the site without downloading the toolbar) for even easier on-line shopping to benefit Column of Hope. The toolbar includes the iGive search engine which also benefits Column of Hope each time it is used.

Happy Thanksgiving!

feeds@yuku.com (Lisa Stringer) — Tue, 24 Nov 2009 13:10:30 GMT

I just wanted to wish everyone a Happy Thanksgiving! I know when we don't feel well it is hard to be thankful but remember it is the little things that truly matter like friends, family and the wonderful people CM and SM have let us get to know.

Have wonderful day on Thursday and if you are traveling may you have a safe journey.

Got my denial in the mail today.

feeds@yuku.com (tiredmama) — Mon, 16 Nov 2009 08:56:32 GMT

Got denied my SSDI today. Totally bummed out. Today I went to therapy and my leg gave out about half way through. I am sitting in my chair now with a leg that won't function and totally confused about what I should do. I know that with as weak as I get with only minimal exertion there is no way I could ever hold a job, but I am not sure I have the strength and energy it will take to appeal their decision...

I really need some advice here....

feeds@yuku.com (tiredmama) — Wed, 11 Nov 2009 11:50:40 GMT

I have been for my EMG and the neurologist says it is normal. I have been to an orthopaedic surgeon and a spine specialist and been told the problem was either my syrinx ( by the orthopaedic dr. ) or neurological ( by the spine specialist at Cleveland). Now they are referring me to another spine specialist to manage my back pain. Now this still does not answer why my left leg will not work right. I have felt from the first that the doctors were not giving any credence to the syrinx because...

Starting phyical therapy next week

feeds@yuku.com (tiredmama) — Wed, 28 Oct 2009 21:43:03 GMT

Hooray... I finally bit the bullet and checked out the physical therapy at one of my local hospital and was in for a couple of pleasant surprises. First, when she asked me what I had been diagnosed with and said syringomyelia, she knows what it is. That's very promising:) Then when I asked about the co-pays she told me they bill the insurance first, then the following month they bill me, and I can make payments on it, instead of paying the whole bill every month:) At least this is going...

???s about Tethered cord and does temp probs go with SM?

feeds@yuku.com (rorow78) — Sun, 25 Oct 2009 11:00:15 GMT

Is inability to regulate body temperature a normal symptom from SM? When I'm cold, it's so hard to warm up, when I get overheated, it's very very difficult to cool down. I remember reading a long time ago that this can be a part of SM, but does anyone else have this? I'm thinking this could be a hormonal thing maybe.

ALSO, anyone here who has tethered cord deal with a lot of low back pain? What were your personal symptoms of this? I'm curious about this syndrome...

Tonight's Seventh Annual "Working Toward a Day Without Pain" Gala

feeds@yuku.com (babkane) — Sat, 17 Oct 2009 08:01:16 GMT

I am so sorry I haven't been able to participate on this message board for quite awhile. It looks like I have a lot of catching up to do! I continue to recover from major spine surgery, and struggle through each day with my recovery and mitochondrial disease. I'll explain that one soon, but for now I will tell you that it is a serious energy and strength sapping disorder.

At the same time this has been going on, I have been very busy working with volunteers to plan the...

Chiari crusader dies so sad

feeds@yuku.com (razzle5150) — Wed, 14 Oct 2009 11:31:25 GMT

http://www.legacy.com/obituaries/deseretnews/obituary.aspx?n=kelly-morrill&pid=134320970

After giving up for quite some time...I'm ready to look for more answers

feeds@yuku.com (rorow78) — Wed, 14 Oct 2009 07:45:17 GMT

Good morning!
I haven't been here for a very long time. I actually got to the point quite some time ago where I felt like if I spent anymore time on the CM/SM sites and groups, it would just keep me going in the downward spiral I was already going in. So, I quit visiting them, and quit looking for answers. Just worked with my PCP/internist to keep my symptoms treated and lived my life.

I have two little boys 8 and 5 who are very high...

First visit to neurologist

feeds@yuku.com (tiredmama) — Tue, 06 Oct 2009 14:29:09 GMT

OK... I will start off by saying how disappointed, disgusted, and completely fed up I am. The neurologist the neurosurgeon sent me to feels that the symptoms I am having can't be coming from my syrinx, but fully admits that enormous syrinx can have no effects while small ones can have alot of symptoms. I have been completely up front in that my symptoms come and go, with the only constant being pain. I passed my initial neurological exam, but he did see more muscle weakness while...

went to rheumatologist

feeds@yuku.com (tiredmama) — Thu, 10 Sep 2009 14:41:39 GMT

No ehlers danlos. good news at long last. lol. he did prescribe lyrica. hoping that will work. i liked him alot, but i don't have to go back and see him again. so that is one less doctor i will have to see. that definitely makes me happy.

It's that time again! Day Without Pain Biograhies

feeds@yuku.com (LKanePunyon) — Sun, 30 Aug 2009 15:59:37 GMT

Good Evening!

As you know, the 2009 Working Toward a Day without Pain is coming upon us quickly (10/17/09)! That means it is time to update the biography PowerPoint and framed biographies. The framed biographies sit on the dinner and item tables and the power point will be on a loop through dinner. We have found that these biographies really added a personal touch and helped show the guests the faces of the people they are helping.

If you would like to...

How is everyone?

feeds@yuku.com (Lisa Stringer) — Mon, 24 Aug 2009 12:13:10 GMT

Hi,
I hope everyone is enjoying the end of their summer. I just wanted to see if we can get updates on what people are up to.

We know Barbara is hard at work recovering from surgery and is back behing the wheel.

We know the addition for Owen is done so I am sure they are all exhausted.

Mel how are you and the kids?

Jerry any new movies?

Kathi how are you an Neil?

Eliza are you getting ready to go back to school??

...

And the results are in... well the MRI results

feeds@yuku.com (tiredmama) — Wed, 19 Aug 2009 18:09:43 GMT

I was very sneaky and got my MRI results.... it is my body after all. No reason to wait until the end of September to find out if something is wrong with my brain. Anyway... NO CHIARI!!! That's great news. They did find 2 developmental venous anomalies. One is about 12mm in the front of the cerebellum and draining to the rear. At least it's draining, I think. lol. From what I have read they can hemorrage, that would be quite bad I would think, and can cause seizures. Don't...

Eight Month Surgerversary

feeds@yuku.com (babkane) — Fri, 07 Aug 2009 11:13:33 GMT

My eight month surgerversary was on Saturday. It is amazing how fast the months are flying.

I reached several new milestones over the last couple of weeks:

1. I drove to and from a medical appointment 30 minutes away. Most of the drive was on Transit Rd.

2. Are you ready for this one? I tied my own sneakers!! I have been avoiding shoes with ties...

Went to neurosurgeon

feeds@yuku.com (tiredmama) — Tue, 04 Aug 2009 21:57:53 GMT

Went to the neurosurgeon on Friday and I have to redo the MRIs of my back and also have one done of my brain. He thinks I may have a lesion on my brain due to facial numbness. He said all facial nerves are in the brain. He tested my reflexes and they are almost nonexistant on the left side. Left arm barely moved, left leg barely moved, shoe flew off right foot when he tested the right side. At least there was one moment of humor lol. I have to see a rheumatologist because he thinks I may have...

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