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Marriage
Diary Of A Gilenya Pioneer: Fingers Crossed
04 months ago
Several months have passed since I began taking Gilenya on May 5. Today I’m focusing on the drug’s possible side effects and how I have personally been affected. The good news is that I seem to be mostly fine so far. In spite of this year’s gloomy start with 2 separate attacks within it’s first few months, I have had no attacks since beginning this treatment. In hindsight I really do feel that Rebif, and probably interferons in general, are truly just not right for my body.
With my Gilenya followup appointment looming in a couple of weeks, I’ll soon find out if Gilenya suits me in the long run. As you can see, I do have my fingers crossed!
UPDATED : The MS Hug / Girdle Pain / Girdle Pain Sensation / Squeeze ‘o’ Death
48 months ago
Grey's Diagram Of The Body's Intercostal Muscles.
Lately my absence has been due to serious trouble with something frequently called the MS Hug or sometimes Girdle Pain or sometimes Girdle Band Sensation. There are a couple of theories on what causes this. One theory is that it is just muscle spasms like all the other muscles spasms experienced by people like me. And by “muscle spasms” I mean awful unbearable crippling pain (although not always). The more popular theory is that the spasms are caused by lesions on the spinal cord – I’ve never had an MRI on my spinal cord so I can’t tell you if that could be a factor here. It can be an exacerbation or a psuedoexacerbation. In my case I’m not sure. But I’m going to try to give you all the information I can about this abomination. Please remember, I work at a telecommunications company and have no medical background.
Diary Of A Gilenya Pioneer (UPDATED)
611 months ago
Gilenya (Fingolimod)
As it turns out, similarly to my father’s results with Avonex, Rebif has caused my liver enzymes to shoot up to about 3X the upper limit of normal in the span of slightly less than 2 years. My options?
1) Tysabri : the risk of PML is too severe for me to brave this drug – reputed to be a risk of death or severe disability as high as 1 in 200 for some individuals and 1 in 2000 for others
2) Copaxone : statistically slightly less effective than interferons – works great for my father but I truly don’t want to do a daily injection except as a last resort
3) Gilenya : aka Fingolimod – when this was first approved by the FDA I wrote a blog post to summarize all the information I could find – it is the only oral disease modifying drug for multiple sclerosis – DING! DING! DING!
I have chosen to switch to Gilenya.
More Secrets to a Successful Marriage
01 year ago
Money Makes the World Go 'Round!
It’s hard to believe that ten years ago today I married my best friend. Not to get all sappy, but I think it’s worked out pretty well! In fact I found some statistics on Wikipedia (if you can trust it!) that say we’re over the hump. I attribute our marital success (hey let’s be honest, it’s not always bliss) to a lot of things I’ve talked about at length before.
As we move along another year I have come to believe one of the most important components to any marriage is always going to be financial. Rounding our 10 year mark has coincided perfectly with the two of us meeting many of our financial goals. It wasn’t easy, but it’s incredibly satisfying. Making decisions and working diligently together to make things happen has brought us even closer. This has given us peace of mind and has made us excited about our next goals.
The Secrets to a Successful Marriage
42 years ago
by Will
in Animals, Asthma, Cats, Health, Marriage, Multiple Sclerosis, NuVox, Telecommunications, Travel, Will & Sara, Work
Will & Sara at McPherson Park in Greenville, SC
As of today Sara and I have been married for 9 years! It’s been a long road and I can’t believe all of the things we’ve seen, said, and done. Some days I feel like we’ve always been together and others it feels like no time at all. One thing is for sure, I am the luckiest guy in the world.
On January, 19th 2001 we piled into Sara’s white 1991 Mitsubishi Montero with Ben Chabot and his then fiance Caitlin and drove to the Little Wedding Chapel in Easley, SC. I remember our family and friends packing into the woefully small chapel and laughing with us through the next 30 minutes of comedy gold.
Highlights:
- Meeting the minister minutes before the ceremony in his bright yellow plaid suit and matching bowtie; (un)fortunately(?) he wore a robe for the ceremony
- Sara’s mother thinking that her father had already, “given away the bride,” but not heard it as he is somewhat deaf and whispering very loudly while crouching and tugging on him to sit down
- Sara and I being forced to stand and bend uncomfortably over the kneeling bench we asked be removed several times. That’ll show them! We’ll stand and bend over you uncomfortably!
- The operatic rendition of the lords prayer with trademarked country twang played on a cassette deck that had the entire chapel in peals of laughter by the end
- My botching of my vows, “with this ring I be wed…,” WTF was I thinking?
- Being trapped with my Grandmother Byrd during the reception who I believe was still convinced that I was either gay or had impregnated Sara and was forced to marry her; I still cannot understand how these conflicting ideas can occupy the same place in anyone’s head…
- Sara being trapped during the reception with a mutual friend who had been gone all summer and was desperately in love with her
- Sara’s Dad is the spitting image of Norm Abrams. I’m not kidding. My Grandfather Wayne is quite the furniture builder and artist and was convinced we had no small celebrity on our hands and felt compelled to introduce himself and discuss his love of the New Yankee Workshop. Both men are slightly hard of hearing so the conversation went something like this:
Grandfather Wayne: “I’m Hugh, Will’s grandfather.”
Sara’s Dad: “No, I’m Sara’s dad, Jerry.”
Grandfather Wayne: “No, I’m Hugh, Will’s grandfather.”
Sara’s Dad: “No, I’m Sara’s dad, Jerry.”x20 or so until Sara walked up and straightened them out…
- Being pelted by birdseed so hard it left marks and Sara shaking birdseed out of her over styled hair for about a week after
- Leaving the wedding with Ben and his fiance to head home for champagne
- Champagne had been left in the freezer by someone and exploded into champagne slushy
- Going to Nick’s Tavern to drink with some friends when your freezer is full of champagne slushy
- Getting almost too drunk to consummate your marriage and finally managing it way too late above the heads of your best friend and his fiance who for some reason were spending the night
Multiple Sclerosis : Year One
102 years ago
MRI images from the side make you look like a monster!
My first year of MS diagnosis wrapped up about a month ago and I’ve been reflecting on all the randomness and misinformation about the disease. As a lot of things in my life begin to come together (I’m growing up finally!) I find myself mourning the diagnosis more now than I did initially. Here comes the first downer post of 2010!
No one knows what causes MS and there is no cure. The idea of the cure is threefold: 1 – prevention of the disease, 2 – prevention of further progression of the disease, and 3 – reversal of disability caused by the disease. Theories are that those genetically prone to it may have it set off by exposure to a virus (probably the Epstein-Barr virus), that is is solely due to a vitamin D deficiency, and that a vascular disorder causes a backup of blood that leads to iron deposits in the brain. At any rate, the effect is that the immune system attacks the central nervous system, destroying myelin and the nerves that it protects. About 3/4 of all those diagnosed with MS are women.