More Thank You's

Thanks to Betty and Ron, Brent and Pari Ann, Maryann, Stuart, Danielle, Cindy, Barb, Randy, Todd, Yvonne, Crystal, Dustin, Lora, Kim, Dana, Frank, Vic and all of my friends for all of the support you have lent me, in so many ways. I knew if I started this it would be a challenge to remember to thank everyone, but I am very grateful to all (whether I remember or not).

This Video Says It All-Can You Relate?

I saw a powerful video earlier today, made by someone living with MS, which describes in pictures and words what MS is like. I encourage you to watch this. If you are living with MS, you surely can relate to it. If you don't have MS this is what we are trying to describe to you- in almost EXACTLY the same words I have used so often. This is what I was grousing about in my post the other day when I joked about "Shut your piehole". The only thing I would add to this, if I were to make one, is about the flu-like symptoms caused by the injections I am on. Can you imagine having the flu for over a year? My temps are up and down 4-5 degrees daily.

Thank you!

I hate doing thank you's, only because I am sure to leave someone out. But here goes: Thanks Rob, Tracey, Rosemarie, Rob, Ralph, Dad, Clint, Mom, Lisa, Ann, Kirk, Maryann, Jim, Michael, Danielle, Pam, Kristy, Marylou, Uncle Mike, Uncle Carl, Aunt Teresa, all my friends, online and offline for all the kindness and support. It is truly appreciated! I am anxious to get the next chapter underway.

Learning to Live Again: One Year after MS

June 6, 2010 marked one year since I was diagnosed, and July 1, 2010 was the one-year anniversary of my being on Betaseron injections. What a whirlwind year it was, not only for myself, but for my family and friends as well.

If I was going to write a book about it (and I just might), it would be titled "How to Survive MS Without Losing Your Mind". That one would be for those living with MS. The one I would write for friends and family of MS'ers would be titled "You Have No F-ing Clue What You Are Talking About, So Shut Your Piehole". I say that in jest, I would not do such a thing. (I might think it, but never do it). I only say that because of the incredibly insensitive, uninformed just plain ignorant things people have said to me over the past year, most of which many MS'ers can totally relate to and which the blissfully unaware should thank God they are so clueless.

I love all of my family and friends, so don't worry- it's not YOU I'm referring to, it's those other people. :) Really, I'm truly just kidding. I do still have my sense of humor.

I have had to literally re-train my brain to do things (like think and remember). I have had to go through physical therapy. I am going through occupational therapy and in the process of starting vocational rehabilitation. I have had to fight with a completely broken medical-insdustrial complex to get my meds ($30,000 + annually just for the injections), I have had to endure multiple episodes related to the MS. I may not exactly be winning (though I just might be), but I dang sure ain't losing!

This year has been about learning to live again, so I present the Foo Fighters, Times Like These.

Angel Food Ministries Offers Online Ordering with Local Pick-up, Everyone Qualifies

My sister shared this with me. I haven't ordered from them yet, but it looks very tempting. $29 for the Signature box, delivered to a local pantry for pick-up. I really was more tempted to try one of the specials, which vary from month to month (as does the food). I like that they offer online ordering, and everyone qualifies- no forms to fill out, no income guidelines. Just shop and order. Check them out by clicking on the title of this post.

Breathe (Acoustic Version) by Anna Nalick

I like this one also.

CCSVI: Pipe Dream or Time to Clean the Pipes?

A lot has been written lately about what has become known as the "Liberation" treatment for MS patients. Ostensibly to correct a condition known as CCSVI (cerebrospinal venous insufficiency, the liberation treatment involves vascular surgery to either insert a stent or else use a balloon to open veins in the neck and brain (and sometimes chest) that are malformed or blocked. The thinking of the doctor who pioneered this treatment, Dr. Pablo Zamboni, is that some of the veins in the areas mentioned are not allowing the blood to properly drain away from the brain and spinal cord. His theory is that this results in the accumulation of waste, and particularly iron, in the central nervous system. This accumulation then leads to the demylenation that is MS.

This theory is controversial in the both the MS and medical communities. Dr. Zamboni did not have a control group in his study, so it technically is of little scientific value. But he did have some intriguing findings nonetheless, and doctors around the world are on the case.

Phase 1 trials have now been completed in the US, and phase II is underway. You can find out more about this, known widely now as the "Bufalo Studies" in the latest edition of Neurology Now or by clicking the title of this post to read more online.

The liberation treatment is not available in the US or Canada at this time, though both countries are actively researching it. Many of my MS friends have either already had this done by going overseas, or are planning to and raising funds for the CCSVI treatment. I will be waiting and watching. I pray for all. I understand how desperate the situation is for so many.

What Color is MY Parachute?

I had my long-awaited appointment with Vocational Rehabilitation this week. I am thrilled that they have accepted my case. We reviewed the results of my intake testing, and set another appointment several weeks out. I am supposed to look at a couple of websites they gave me to look at schooling/training options. I am very excited!