Tag Archives: NMO

Prizes! I have PRIZES!!!!

No, really.  Texas and I are riding in the Bike MS 150 in May of this year.  Well, Texas is,  I haven’t raised enough moolah yet.  So this is where I need your help.  Please donate.

Right here is where you can find my page.  I need to raise $300 to ride.  I need to raise this by April 7th so I can pick up our rider packets close to our house instead of an hour and a half away. (Yes, I want to avoid a 3 hour round trip. Call me crazy)

To try and bribe all y’all to donate, I’m going to give something away. For every $10 that is donated, you get an entry in a drawing.  The winner will have a choice between a Fire Stick, an Amazon Dot, or a Stitched By JessaLu regular wedge or box bag (you pick, I’ll pay). If I get to $500, I’ll pick two winners.

Since a bunch of you came through for Texas too, I’ll also enter anyone who donated to him.

So here is the breakdown:

  • Donate $10 = get an entry
  • Share the link on FB, Twitter and IG with #MakeSquishRide = get an entry
  • Share on your blog and let me know = get an entry


I know you all have come through in the past for helping raise money to find a cure, not only for MS, but for NMO. I am always grateful for your generosity.

Happy Tuesday y’all!

 

Can ya spare a dollar?

My husband is riding the Sam’s Club Round-Up Bike MS 150 May 2nd.  He’s only riding one day, but he is doing the Century Ride. ( which isn’t really 100 miles, it’s 106.2. I keep saying it is the last 6 miles that will kill him)  

If you didn’t know, NMO was once thought to be a variant of MS and many patients were originally misdiagnosed with MS. Even after finding out we were different, the MS Society still holds a place for our orphan disease and provides services and support for NMO patients and their families (along with a few other orphan demylenating diseases). 

As if him doing this isn’t proof enough that he loves me, I forced him to he had his toes painted MS orange today. Do a good thing and click here to donate. It is even tax deductible! He’s only about $450 away from his goal of raising $1000.

  

Hello April

I’m still not certain what happened to March, but I think it went something like this:

  • I went to L.A.
  • Saw a live UFC event
  • Had my Rituxan
  • Became more medically interesting
  • Celebrated Texas turning 35
  • Knit a bit on a sweater

I want to add more length, but I’m kind of tired of it.  However, I think I have a Julia, a pair of socks, and may have bought Romi’s 2015 Mystery Shawl. (I’m blaming Margene for this one) At least I know I’ll like it, since I love almost all of her designs.

Now I just have to pick my two colors. It is going to be Beaverslide, but I haven’t been able to narrow it down further than this:

Although, I am leaning towards the green and white or the purple and white.  What are you doing this weekend?

Happy Easter y’all!

10 Years and all I got was this blog.

Who knew I’d be doing this 10 years later. I decided to take a look back at the past ten Octobers.

9 years ago, I had just gotten my job at Edwards and was moving to the desert.

8 years ago, I made the floppy.

7 years ago, there was some type of crazy weave along and 2 pairs of socks from Socktoberfest.

6 years ago this month, I made the decision to move to Texas. My head also went all splody around that time*.

5 years ago, I pretty much spent the whole month blogging about my trip to WI that took place the previous month, trying to avoid the reality of the official NMO diagnosis

4 years ago, I was traveling back and forth to Pennsylvania trying to help family.**

3 years ago, I took fundraising for NMO to the knitters.

2 years ago, there was another round of fundraising, a completed pair of socks and DUCKS!

1 year ago, yet again, more fundraising and no knitting at all.

I think I better get on making this October a little more interesting than the past three. They seem kind of boring compared to those first few.

I’m not doing a fundraiser this year because the things in my head decided to act up last month. If you still feel like donating, here are some options.

Happy Wednesday y’all!

*Hmmm. Anyone else wonder if there is a connection? Really there isn’t since we can now trace the NMO back to 2003, but it doesn’t hurt to josh with Texas about that.

**Yeah. Well, that was a waste of a month. Just saying.

Just keep swimming

Texas. Hot! And I am not talking about my husband*. I’ve had to order a cooling vest and cut out my 11 a.m. class for a week or two until it gets here. The East gym is half windows. Throw in 3 hours of twenty, hot, sweaty students and it is a recipe for UGH! There is this thing called Uthoff’s where, when you get overheated, the damaged nerves (think of an exposed wire) start confusing the signals they’re transmitting. Not so much fun.

I usually end up passed out on the couch around 2 p.m. every day. Knitting stitches falling off the needles, cat on my head, the dulcet tones of bad television playing in the background. I talk about jiu jitsu and wanting to win, but the reason this all started was getting in shape. I always have that thought, at the back of my mind, that something could go horribly wonky with the NMO. I want to be as strong and prepared as I can possibly be.

Either that or I need to spend less time looking at the NMO support group stuff. Horrific stories! Probably not the best nighttime reading. Just saying.

I’m off to make my special beans for a team get together. What are you doing today?

*Although, if he would change his FB picture to a current one, some people might think so. That current one is him at his heaviest. He was working on the train at the time, it was about a year after the NMO diagnosis and he emotionally ate his way through that first year. He is about 80 lbs lighter now. He thinks seeing his fat picture will motivate him to lose more.

I still got spunk!

For those of you playing along elsewhere, y’all can just skim away.

In October of 2006, I was living my dream, enjoying sunny California, working as a contractor for the Air Force and working on finishing up my degree.  Until the day I snapped the end of my ulna off.  The first doctor that I saw said the best he could do was fuse my elbow at a 90 degree angle, but there was this guy doing amazing things at USC and it wouldn’t hurt to go see what he had to say. Dr. Itamura was able to work magic and give me back most of my range of motion. I have screws and plates in there, no cartilage, and rearranged nerves and other bits, but I could use my arm. It took 6 months of physical therapy before I could drive, let alone return to work. I was told that I could expect to need an elbow replacement in about 10 years or so.

Two years later, I was living in Texas and recovering from the second surgery on my arm. I started noticing some problems seeing things at night.  Soon after, one morning I woke up not being able to see anything with my right eye. The doctors moved fast and ran what seemed like a thousand tests.  I was treated with steroids and did regain my vision. The neurologist said that he thought I had MS and we  started treatment.

In August of 2009, blindness struck again.  I went through two rounds of IV steroids with no improvement. My neurologist at the time said he didn’t think I had MS and he didn’t know what else to do. He referred me to UTSW in Dallas to see a doctor that had just come from Johns Hopkins.  This is where I heard about Neuromyelitis Optica for the first time. I heard that statistics said that within five years, I would be blind, paralyzed, or dead. I heard that there was hope if we found the right drugs to stop the attacks, that it could have a better outcome than a diagnosis of MS. I learned that I had lesions in my spine, brain stem and optic nerves.

I still didn’t have my vision back, but Dr. Greenberg’s nurse, Maureen Mealy, advocated to have me give plasmapheresis a try even though I was outside the treatment parameters. I spent 10 days in the hospital having my plasma (and all the bad stuff that was attacking me) taken out and I was able to regain most of my eyesight again. I’ve had a couple episodes since then and I was lucky to be treated quickly and appropriately. For treatment, I now have Rituxan infusions twice a year to kill the B cells that attack the myelin covering of my nerves.

I had the one – two punch of the arm and then a diagnosis with a rare disease and I had resigned myself to a certain perception of what my life was going to be like. Years of drugs like steroids, immune suppressants, and Lyrica, and me giving up left me overweight. I checked out and didn’t even realize it.

Two months ago, after joining a gym, being bored out of my mind, and feeling ready to give up again, my husband brought up the idea of taking some type of martial arts class.  We signed up with Travis Lutter MMA and I thought I’ll just play along and see what happens. I found out that I liked Jiu Jitsu. My coach, Bobby Alexander works with my limitations and helps modify things when needed. He and my teammates challenge and encourage me to get past what I think I can’t do, even if they don’t realize they’re doing it.

I had thought that I was being positive and doing well coping with everything. Until I started training in Jiu Jitsu, I didn’t realize how much I had just given up. I didn’t realize how much I thought I couldn’t do because of my arm or this disease. I didn’t realize how I had limited my life.  And I didn’t realize how much I still had inside of me.  

I recently competed in a Jiu Jitsu tournament and I was so happy just to be there and go out on the mat, let alone win a match. In two months, I have lost 25 pounds and come off of insulin. I feel better, I have more confidence, I am finding myself, I am reinventing myself.  I still have my spunk and competitive spirit and this is just the beginning of my journey.

Random Tuesday Ramblings

I have finally caught up on my feed reader thing today. It may have involved skimming and deleting, but I’m at a zero count, so it works for me.

I have no idea what to do with the living room at the apartment. My furniture will not fit ( I’m going to torch the love seat anyway) and I’m really not finding anything that suits my fancy.

There are surprisingly little “apartment sounds”, but I’m still finding it hard to sleep well. I may have to purchase a topper for the mattress. It has a pillow top, but it is still quite firm. It suits Texas, but not me.

I’m spending the night again at the apartment, but I really do have to go back to the farm and pack up more schtuff.  You’d be amazed at the amount of crap I’m throwing out. If I haven’t touched it in the two years we’ve been at the farm, it’s out of here.

Except for the yarn. Because, well, that would just be silly.  I did contemplate a de-stash sale. For about a minute. I think there will be far more opportunities for meeting people and hanging out with the knitting. Being challenged by others instead of just letting things languish. I’ve already been invited to a weekly spin thing at a friend of a friend’s house.

I think moving may be good for the soul. Not the crazy making of actually having to pack and move, but the decluttering is rather freeing.  Looking at that odd Hawaiian shirt salt and pepper shaker set and wondering if it is really going to follow me again. (It is not) Picking up the inkle loom and deciding that, yes, it is something I want to work on since I’ll have more time.

Of course, it doesn’t help that patient day made me all moody and introspective on top of the moving crazy.  I don’t know if the Rituxan will work or if I’ll wake up blind or paralyzed (or hell, hit by a car crossing the street) and damn it! There are things I want to do and enjoy and see and discover while I still can. Sometimes I forget and get bogged down in the detritus of every day life.

Happy Tuesday y’all! L’Chaim!

Thoughts from an airplane

Mmmm. Warm, salty nuts. I think I’ll have to start warming mine at home. I think they taste better.

I was wondering before flight how many free drinks were enough? I didn’t even have to wonder, those bitches kept my wine glass full. The.whole.way.

I think my seat mate is some type of MMA dude. He smells good too. Seriously good.

How about some more swag? Those Guthy Jackson people are awesome. Info on how to win and how to donate is a couple posts below.

Yes, Christine Ha stopped by to speak to us. You do know she has NMO and that caused her blindness, right?

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Just wanted to throw this out there before I hop on the plane and pass out.

Happy Thursday y’all