One Woman Learning to Live Her Best Life

NickTag Archives

World MS Day

For those who may not know, my sister is living with Multiple Sclerosis (MS). Without getting too technical, MS is a neurological disorder which affects the ability for the nerves in the brain to communicate with the spinal cord and optic nerves. It is caused by one’s own immune system attacks the myelin in the brain. Once the myelin is damaged, it can no longer carry the electrical signals from the brain down to the spinal cord and optic nerves.

My sister was diagnosed about 10 years ago after a visit to her eye doctor where she complained that she was having a lot of “floaters” in her vision. He referred her to an MS specialist at Vanderbilt University Medical Center who ran tests and confirmed that she had MS. In addition to the vision issues, my sister also has balance & coordination issues, dizziness, weakness in her limbs, and chronic pain & fatigue as a result of the MS. Given she was recently widowed and is trying to raise two children, you can well imagine how those symptoms could affect one’s life.

In the past, it has also been extremely difficult for her to get medical insurance due to the extremely high cost of treatment medications. I’m hopeful that will get easier now that health care reform has passed which includes the pre-existing condition clause.

In addition to being very expensive, some of the medications are also very hard on the body. (The medication a patient receives varies based upon which variation of MS with which the patient has been diagnosed – relapsing or progressive.) My sister takes interferon injections which were successfully keeping her symptoms at bay in the early years after her diagnosis. Unfortunately, interferon is VERY hard on the liver of patients taking it. She eventually began having elevated liver panels and was forced to make the decision of continuing her current dosage and possibly facing a liver transplant in the future, or reducing her dosage which could mean more symptoms, but potentially saving her liver. She opted for the latter and has subsequently had to deal with being more symptomatic.

Why am I bringing all this up now you may be asking? Well, that’s because today, May 26, is World MS Day. More than two million people across the world, and more than 400,000 in the United States, are living with MS. Join with 100 MS organizations around the globe for the 2nd Annual World MS Day to raise awareness about multiple sclerosis. If you can, please wear orange today either in an article of clothing, an orange ribbon, an awareness bracelet, etc. to show your support for MS awareness.

If you also want to help in a more tangible way, my friend Nick will be riding 150 miles in the West Michigan Bike MS Ride in a couple of weeks. By donating some money toward his fundraising efforts, you will not only be showing your support for World MS Day, but will also be helping raise money to find a cure. Nick has been doing this event for several years, and I’m so very appreciative of that fact since this disease has touched my life personally. Here’s a photo of Nick and his two training/ride partners taken during the 2007 Bike MS Tour:

I’ll close with my Tuesday food journal.

Breakfast:

Iced coffee made with 1 cup nonfat milk – 2
Banana – 2

Lunch:

Chipotle Adobo Chicken – 6
Green salad – 0
2 tsp. olive oil w/balsamic vinegar dressing – 2
Skinny Cow ice cream cup – 3

Snack:

Grape tomatoes – 0

Dinner:

Garlic Herb Chicken Sausage – 6.5
Green beans – 0
TJ’s Quinoa Duo w/Vegetable Melange – 4
VitaTop – 1

Snack:

Nonfat milk – 3.5
Z-bar – 2

Total Points: 32
Exercise: None, still battling back issues
WPA Balance: 35
AP Balance: 0
Liquids: 80 oz

Until next time …

World MS Day

For those who may not know, my sister is living with Multiple Sclerosis (MS). Without getting too technical, MS is a neurological disorder which affects the ability for the nerves in the brain to communicate with the spinal cord and optic nerves. It is caused by one’s own immune system attacks the myelin in the brain. Once the myelin is damaged, it can no longer carry the electrical signals from the brain down to the spinal cord and optic nerves.

My sister was diagnosed about 10 years ago after a visit to her eye doctor where she complained that she was having a lot of “floaters” in her vision. He referred her to an MS specialist at Vanderbilt University Medical Center who ran tests and confirmed that she had MS. In addition to the vision issues, my sister also has balance & coordination issues, dizziness, weakness in her limbs, and chronic pain & fatigue as a result of the MS. Given she was recently widowed and is trying to raise two children, you can well imagine how those symptoms could affect one’s life.

In the past, it has also been extremely difficult for her to get medical insurance due to the extremely high cost of treatment medications. I’m hopeful that will get easier now that health care reform has passed which includes the pre-existing condition clause.

In addition to being very expensive, some of the medications are also very hard on the body. (The medication a patient receives varies based upon which variation of MS with which the patient has been diagnosed – relapsing or progressive.) My sister takes interferon injections which were successfully keeping her symptoms at bay in the early years after her diagnosis. Unfortunately, interferon is VERY hard on the liver of patients taking it. She eventually began having elevated liver panels and was forced to make the decision of continuing her current dosage and possibly facing a liver transplant in the future, or reducing her dosage which could mean more symptoms, but potentially saving her liver. She opted for the latter and has subsequently had to deal with being more symptomatic.

Why am I bringing all this up now you may be asking? Well, that’s because today, May 26, is World MS Day. More than two million people across the world, and more than 400,000 in the United States, are living with MS. Join with 100 MS organizations around the globe for the 2nd Annual World MS Day to raise awareness about multiple sclerosis. If you can, please wear orange today either in an article of clothing, an orange ribbon, an awareness bracelet, etc. to show your support for MS awareness.

If you also want to help in a more tangible way, my friend Nick will be riding 150 miles in the West Michigan Bike MS Ride in a couple of weeks. By donating some money toward his fundraising efforts, you will not only be showing your support for World MS Day, but will also be helping raise money to find a cure. Nick has been doing this event for several years, and I’m so very appreciative of that fact since this disease has touched my life personally. Here’s a photo of Nick and his two training/ride partners taken during the 2007 Bike MS Tour:

Thanks, Nick! Until next time …

Updating on the Run

Sorry for not posting in a while. I left last Thursday afternoon and was out of town for nearly a week visiting my friend Tracy up in eastern Washington. Even though she was feeling a bit under the weather, we still had a great visit.

On Friday, we headed over to Pasco for the day. I had an appointment with her brother Kevin to get another tattoo. I had him do a piece in memory of my beloved grandmother. She grew beautiful irises and loved hummingbirds, so that was the inspiration for the design. Lastly, I had him add in “Gran” in a nice script since that’s what I always called her. Here’s a pic of the finish product taken immediately after he finished it:


The colors are a bit softer now that it’s healed for a little over a week. I’ll take another photo to post once the healing process is completed. I know you can’t really tell from the pic, but it’s on the side of my right thigh about halfway up. As a size reference, it’s probably about 6″ across at the widest part.

On Saturday we just kind of hung around at Tracy’s house. I got in quite a bit of good stitching time on Moonlit Garden. It’s the Loose Feathers #22 design from Blackbird Designs. Here’s my latest WIP photo of this design:


Design: Moonlit Garden (Loose Feathers #22)
Designer: Blackbird Designs
Fabric: 30-count Broomstick Brown from R&R Reproductions
Fibers: Weeks Dye Works
Progress as of June 23, 2009

On Sunday, we headed over to Seattle. Her dad was riding in the 100-mile Livestrong Challenge, so we went over to be his cheerleaders. Even though he had to ride through some rain and a bit of hail at one point, he still finished the full 100-mile ride and raised nearly $1000, too! WTG Jim!! Here’s a photo I snapped of him right after he finished the ride:

Monday was my last full day in Washington. We just kind of took is easy most of the day. We did head over to Moses Lake mid-afternoon to take in a movie. We went to see “The Proposal” and had a great time. It was a really fun chick-flick to see together. Of course, it didn’t hurt that it starred hunky Ryan Reynolds either. Oh yeah, Sandra Bullock was in it, too. P The main cast was rounded out with Craig T. Nelson, Mary Steenburgen, and Betty White (who was hilarious!). In an ironic twist of art imitating life, Reynolds is actually a Canadian married to an American (Scarlett Johansson).

After the movie, we headed back over to Tracy’s place and spent the rest of the day just hanging out and watching TV. We both did a bit of stitching, too. Tracy spent some time working on Psalm 145 from Little House Needleworks. Instead of working on Moonlit Garden again, I did a bit of guest stitcher work on her Sistine Chapel project. I’m still amazed she decided to undertake this project, but I must admit that it was kind of cool to put some stitches in it. ) Here’s a photo of me working on it with the full 2.5 yards of linen sitting in my lap. =O Following that is a photo showing what I stitched on the piece.

 

That’s pretty much it for the photos from my trip that I’m going to post to my blog. If you want to see more, you can find them here.

I’m also nearly a week late posting my monthly photo for the Totally Useless SAL. The new moon fell on June 22, but I was still out of town at the time. I actually haven’t had much time for stitching since I got home, so even though it’s nearly a week late, it’s still pretty accurate.

In this photo, I temporarily set my ort bucket on my canvas WIP of Plum Blossom Kimono by Margaret Bendig. This is a class that I’m taking through my LNS, and I’m behind on my stitching right now due to my vacations. Canvas projects just don’t travel as compactly as cross stitching projects. ) You might also notice the quarter on the canvas. It’s not actually sitting on the canvas. It’s a needle park that was given to me by my friend Cindi. It’s a California state quarter mounted to a rare earth magnet. She gave one to my BSF Darla, too. You can see a better photo of it here.

Now that I’ve rambled on so much, I thought I should finally explain why I used “Updating on the Run” as the subject for this post. Even though I was on vacation last week, I’m heading out again tonight. I have an all-day class with Ellen Chester at the LNS today, but then I’ll be catching the red-eye to Detroit tonight to spend some time with my friend Nick. I’ll be there for nine days, and I’m not sure how much time I’ll have for updating my blog while I’m gone. If you want to know what’s going on with me, the best option would be to follow my Twitter feed (info in the side bar on the right).

Well, that’s it for now. I desperately need to get into bed since I have such a long day tomorrow. I still need to finish packing, too. Eek! =|

Until next time …

Related Posts Plugin for WordPress, Blogger...