Drunk on whine......

OK. I'm over it. Of course, I'm still waiting for Webster to bring me some Brie to go along with my whine! (Did you see the comment I left on your blog Webster?? LOL). As no Brie was available, I simply "whined" myself silly. Until 6:30 last night anyway. That's when hubby took me out to dinner for an early anniversary celebration. (Our first anniversary is the 5th). Hard to continue to whine with a hubby like mine taking me out for wine (not whine) and a fabulous meal. He keeps me sane. Still doesn't mean I like MS. Still doesn't mean I am remotely interested in being friends with my MS either. I still think MS sucks. I just have it back into perspective. Of course, often that perspective sucks too! I just wish the MS would leave me alone and go away. Permanently would be my preference, but I'll take temporary. I'd like to go one week and be able to lose my temper without worrying if being pissed off will cause an exacerbation. I'd like to spend the day outside in the sun, gardening, without worrying that the heat will cause an exacerbation. I'd like to be able to be able to WALK around the zoo all day and not worry about falling on my butt or have my husband worry that I'm over doing. O.K.....so maybe I'm NOT done whining yet.

MY day to whine......

This is exactly how I feel right now. Like I have too many balls in the air and I'm catching the ball with my toes. BARELY. Of course, my toes are MS toes and I'm not nearly that svelte. So I tend to drop the balls I'm trying to juggle! Most of the pressure I feel is self imposed out of frustration. I want to do more than I am and just don't have the stamina. The heart is willing but the body isn't. As a result I either do too much (just when I have the hang of imposing self limits for energy conservation) or get too frustrated, or more commonly, both. I still want to be all things to everyone knowing full well I can't. Heck, I couldn't before. (Seriously, who can)? However, I was able to get away with pushing myself harder. When I get feeling sorry for myself I try to focus on the fact that there ARE folks out there that have it worse. I'm not losing my home. I have a wonderful support group. I know things can be worse. BUT. Today, the hell with everyone else. (It's my blog. If I want to cuss I will). I'm tired of being clumsy, tired of BEING tired, tired of hurting (a whole different issue), tired of not hearing (another issue), tired of the chair, tired of being hungry (another issue). Add all those together with not being able to communicate well, stir, and voila. You have me. Pissy. Not a pretty sight. So, today I am embracing my frustration and allowing myself to BE pissy. I've earned it and I'm going to revel in it. I'm not going to watch the news to hear about anyone else's problem's. I don't want to hear anyone else whine about how tough they have it. Today is MY day to whine. Of course, I'm self actualized enough not to allow myself to allow others to bear the brunt of my royal pissiness (Is that a word? If not, it is now), and for that Mark is thankful! So let's see what else can I whine about? Nada. I do believe I have it covered.

Laquinimod Clinical Trial

The following information was forwarded to me from Kim at the Bakersfield MS Chapter:



Dear Friend of the Rocky Mountain MS Center,

We know that patients with multiple sclerosis (MS) want more options. So do we. Please help us get the word out about an investigational oral drug, laquinimod.

If you know someone who has confirmed relapsing-remitting MS (RRMS), is between the ages of 18 and 55, has never been treated with interferon medications (Avonex®, Betaseron® or Rebif®) and may have had at least one relapse in the last 12 months (or two relapses in the last 24 months), this Bravo study may be a good fit.

To see if there is a study site in your area, please visit https://www.TevaClinicalTrials.com/RockyMountainMSCenter.aspx. If there is a site in your area, please note the reference code RMMSC when contacting it. Trial coordinators are standing by to help determine eligibility.

Sincerely,

Karen Wenzel
Executive Director





Rocky Mountain Multiple Sclerosis Center
701 East Hampden Avenue, Suite 420
Englewood, Colorado 80113-2760

Spring has sprung!

Yeah...spring is here. I LOVE spring. The air is cool and the evenings still require a light jacket. Flowers are starting to bloom and my rose bushes have sprouted new leaves. My star gazing lilly's are poking from the ground and my day lilly's are up and have spread. (YEAH). Almost time to pick up some perennials and point to where I want them planted! LOL Because we live in the mountains of California where it snows (as it is as I type), I can't put anything in the ground until mid April. So it gives me plenty of time to decide what to plant. It also gives me a bit of time to decide on what cooling vest to buy. Yes, I am going to wear one this year during the summer when I'm out and about. I'm going to do everything I can to make sure I don't experience the exacerbation's like I did last summer. I know there are no guarantees, but at least it won't hurt and I don't want to have to stay indoors all summer. So, my research begins. I'll share what I discover.

MS and Dieting

There are lot's of things folks do to manage their weight and their health over all. Some of them are just plain nuts (like swallowing earthworms in the 1800's) not to mention dangerous (prolonged water fasts). Some exercise to extreme, some try alternative diets that are clearly not healthy (neither is extreme exercise). Some of us start the doctor recommended "Cut the calories and exercise" lifestyle change.The key is never to start an exercise program without consulting with your doctor. It's even more vital when you have MS or another health issues to deal with. For me, the number one exercise recommended is swimming. Unfortunately, I don't have a pool or live in a community that one is easily accessible. (I live pretty rural and the nearest "big city" is an hour away)and walking isn't an option right now. So, I have to come up with another alternative. Any suggestions???

A letter to my sister.......

My sister and I exchanged a few text messages yesterday. She will be 40 in June and has started the panic that most of us felt when we turned forty and realized we were middle aged. Wondering, "When did that happen, where did my youth go" and re-evaluating where we are in our lives. The 40's are great, and they ARE. Being middle aged isn't something to fear. It's something to embrace. First of all, your still HERE. Then there is the wisdom about life that you've acquired and don't even realize. I find I have a much lower "malarkey" (dad's word from when we were kids remember? When he would try NOT to cuss in front of us. It was used often when WE tried to pull a fast one. Mom/Dad would say we were full of malarkey),level than I did when I was younger. I suppose that's because when we're young we often don't recognize when someone is trying to pull a fast one until it's to late. Now, I can spot a BSer a mile away and I have zero tolerance for any BS. That came with hard earned experience. I also know when to keep my mouth shut. Even if it means biting my tongue until it bleeds. Wisdom is knowing that you can always say a word, but you can never take it back. Wisdom is also knowing that there are some hurts that "I'm sorry" can't heal. Wisdom is also knowing that the best legacy we leave, is our children and you have done a wonderful job raising your son. The hard way, as a single parent since he was a toddler. Look at him now, almost grown. In just a few short years he'll be done with high school and ready to fly on his own. Wisdom is knowing it's not the house, the car or any material thing that we have that is important. It's family. Wisdom is knowing that sometimes the best comfort you can give is simply sitting quietly and listening. Not only with your ears, but with your heart. You are far wiser than you give yourself credit for. Your ready for the next chapter in you life called "Middle Age" and remember you will always have me around to kick your butt when you screw it up! LOL