Sticking my neck out

I've been hearing from people about my post below. I know it's bad that people who know nothing about spinal cords are asking what's going to be gone because surely it can't be left like that, right? Well folks I wish I had an answer. We know it's dangerous. Vertebrae shouldn't develop a sharp point, and that point shouldn't shove into the esophagus. We know now it's why I'm always a bit hoarse and have to clear my throat a lot, and why my voice breaks when I talk. As if being in a car isn't fearful enough, now we add this. A fender bender to most people is little more than an annoyance, when they come right down to it; to me it can easily be fatal because of the Ehlers-Danlos. Now did someone, the Devil, I don't know, add just one more thing to threaten life, seeing if I can be pushed right on over the edge? I'm getting darn close. No one wants to go fix anything because I'm such a liability. I'm a very scary person, you know. I ruin surgical statistics with the bat of an eye!

Anyway, I'm having a small procedure in a couple weeks, on the 28th. Thankfully it's at 10 a.m. so I won't have a tremendous time to go without eating or drinking, as I can't have either in the 4 hours prior. Ugh. Nerves alread. I am grateful to Jackie as she's coming along. It's 3:30 a.m., time to get my 1-2 hours.

Some birthday gift. Yep, it's being done on my birthday. But hey if it turns out great, I don't care WHAT day it's done on!

Shelby's class

I had class today with Shelby. It wasn't easy, being 7 days out of surgery. Thank goodness for wheels! My head and arm are exhausted but thankfully Shelby was a great lil girl today. By the end of the hour she not only mastered today's commands but also the ones from last week that we missed. She is one sharp cookie!

Miss Shelby in her new vest:

Lil Miss Working Dog

Shelby did great today on paratransit, lying down on the wheelchair lift and holding on for dear life as it moved. On the return lift when the HandiDogs instructor supervised us getting on board, the driver told her they usually take assistance dogs on board first then the owner/chair user. The instructor laughed and told him he would "never get this dog away from her owner." LOL That's my Shelby girl! Class went much better than last week as well, I am happy to report.

I realized that my National Brain Tumor Foundation's Angel Adventure Day is one week after my return from next week's surgery in Baltimore. With everything going on between prepwork to put the house on the market, DH's surgery, my sudden surgery, my mom visiting, and Shelby's training, I haven't been able to put nearly as much into it as I was able to last year. I feel badly about it.

Pardon me asking but if you are able, would you be able to spare even $5? Neurological research is so critically important. It is a terribly underfunded area when it comes to grants and sponsorships, and brain disease is devastating. Even if someone recovers, so-called recovery is typically partial. We are left with permanent life-altering and often debilitating side effects. While we struggle throughout every single day, our families are left to cope and pick up the pieces. Nothing is ever the same.

That is why we need your help. If everyone found $5 to give, which is of course tax-deductible since it is a 501(c)(3), it would make an astounding difference.

While new discoveries funded by your help may be too late for some of us, it gives us hope and courage to get through the days simply to know our children may take advantage of wonderful scientific and medical advances.

There is a link on the right side of the page. If you follow, you will find the donation page--and my family's deep gratitude.

DH's minor outpatient surgery today for a sort-of hernia went fine. He's been going back and forth between watching television and snoozing. All is well.

We have our flights and hotel but not the rental car yet. A generous friend is trying to work it out for us to use her accrued points for the car; hopefully we will know tomorrow if it will work out. It is so kind of her!

There is so much to do I'm a bit flustered which I guess is why I'm sitting here instead of getting things done. Thursday is just a particularly exhausting day because of Shelby's class. I'll work on a couple little things tonight (I hope).

Post-Op Update, awareness items vs the economy

Later this week I'll be 2 months post-op from the artery surgery.

In terms of surgical healing, it's going pretty well. The incision is closed and looking good. The left side of my neck, jaw, shoulder, that entire region just aches all the time. It's not anything that is concerning and I'm sure will continue to improve, given adequate time with the Ehlers-Danlos.

My pain issues, artery region aside, have not changed. I am taking more measures immediately after I get off work at 10 a.m. to try to prevent the pain from becoming completely over the edge by evening since it always worsens as the day goes by.

I am due to have an MRI next month to check on the growth that's pushing in my cerebellum and shoving it back down my spine. It can't be done any earlier since I'm not far enough out of surgery to get a real accurate look.

For the last two months or so, I have really noticed the impact the economy is having on my Chiari/SM awareness items sales. My CURE CHIARI awareness embossed wristbands sales are definitely low. The website sales (Chiari, Chiari 0 (zero) Herniation, and Syringomyelia awareness items) are low as well BUT things are still moving, just at a snail's pace. I know things will pick up at some point but I feel badly for not being able to donate as much to the American Syringomyelia Alliance Project and Wishes & Rainbows. It will get better though!

DS's Babette blanket is coming along well. Today I began work on Panel 9 so if I round up any amount of self-discipline, the rest of the squares should be completed in about two weeks. The contest is going well too; as of now I'm in the top 10 (out of 307) for vote ranking, though not quite as high in the page view rating. I just keep thinking of all the preemie and newborn caps I could make for little NICU babies with a prize gift card from the yarn manufacturer! Thank you to everyone who has voted so far! The contest goes until February 25 or so.

I'm attaching some pictures I've taken the last few days, just thought I'd share.