Plans are coming along at MsontheRoad.com. Which means I've been remiss about blogging here. Check it out and let me know your thoughts!
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@TheGirlwithMS
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Caroline Craven - Certified Life Coach, MS Advocate, Motivational Speaker, Writer & Patient Expert living with Multiple Sclerosis.
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This Girl is on Fire!
No, wait, it's just my MS.
Seems I overdid a bit yesterday. 95F. Cleaned and fed ponies. Road. Went to check out trailers in Norco for MSontheRoad.com, went swimming, worked on road trip, ate dinner, sat outside and enjoyed gorgeous, quiet evening while sipping wine and smoking cigarettes. No, cigs are not good for MS. But sometimes you just have to do it. Talk about toxicity!
And yes, I'm paying the price today. I took two isotonic and thinking of two more. I'm out of Shentrition and waiting for the delivery. I took a double dose of Calm and several glasses of water. Time for some homemade chamomile sun tea!
#TakeThatMS
Stop and Smell the Roses
Some of the best advice for folks with MS. Stop and smell the roses!
When we are moving so fast that we are not living in the present, then expect your MS to act up. Each day we can be in the moment is one more day we can say "Take That MS"!
Helmet Cams are Here!
Tomorrow is trial run on horseback with Brand New GoPro Hero 3 camera!
Kathy tried hers today. Anxious to see what we capture. Editing will need to be done for sure....
MS on the Road
Having some morning coffee on this dreary drizzly day....
Check out MSontheRoad.com. We are getting into the planning stages of our mega trip across the country. Two girls. Two horses. 48 states. And lots of MS awareness! #TakeThatMS
MS, hormones and being MS Aware!
There's a new mark in my calendar, "MS Aware", which occurs every twenty eight days. It's the seven day period leading up to my menses. My symptoms are worse and my potential to relapse is at its highest during this time but I never quite knew why. By being MS Aware, I am more cognitive about how I treat my body and to plan ahead.
Time for some research....
At last! Here is an interesting article:
"MS at That Time of the Month"
Q: Is it more common to suffer increased MS symptoms during menstruation?
A:
In a study published in 2002, 42 percent of patients had exacerbations starting in the premenstrual time period, and the number of premenstrual relapses was significantly higher than during other times of the month. In this group, there was no relationship between the severity of premenstrual syndrome and the possibility of an MS relapse, and being on an oral contraceptive did not seem to protect against relapse before one’s period. These results suggest that the premenstrual time period may trigger exacerbations in some women with MS.
In addition, some women note that many of their ongoing symptoms — like bladder problems, fatigue and spasticity — seem to worsen during their menstrual periods. This effect, however, is reversible and improves once the period is over. A number of strategies are available to help avoid and treat MS symptoms during your period. Consult with your doctor for specific suggestions.
Learn more in the Everyday Health Multiple Sclerosis Center.
Last Updated: 03/19/2007 | Last Reviewed: 03/19/2007
Dr. Ellen Lathi is the director of the Multiple Sclerosis Center at St. Elizabeth's Medical Center in Boston.
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Well, ok, that's interesting. What else can we find?
Not a lot of major studies being done on this but found a small study where 70% of the women surveyed said they had increased Ms symptoms during the time prior to their menses. More info posted here at NMSS
And here is a Great resource! Check out this from Multiple Sclerosis Society in the UK.
Body heat rises and more with menstrual period, having effects on women's MS....
Leave it to the Brits to pull it together nicely.
But, the bottom line is that we just need to be MS Aware during that time and act accordingly. Stay cool, rest, reduce stress, reduce toxins, be kind, rewind...
Check out tips at http://Facebook.com/TheGirlWithMS.
and Join us on Twitter @TheGirlWithMS
How do you handle your MS during PMS?
Mamaki Tea from Hawaii
Wow, just tried my first cup of Mamaki Tea from Hawaii!
Found the following at http://hilocoffeemill.com/hawaiianmamakitea.aspx
"Premium 100% Hawaiian Herbal Mamaki Tea leaves are hand plucked from the tips of the mamaki plant. The leaves come in a large variety of sizes. The highest quality of leaves are plucked from the top of the branch consisting of the three closest leaves to the new shoots. The Mamaki produces edible white berries that grow along the branches. Mamaki is food for the larvae of our rare native Kamehameha Pulelehua Butterfly. Here's a beautiful story about their relationship:
Based on historical information this ancient Hawaiian Mamaki has evolved on the islands before the Hawaiians arrived on the beaches of Hawaii. Mamaki is native to no other place in the world.
Mamaki is best known for its refreshing herbal tea and it's medicinal uses. Native Hawaiian Mamaki tea was traditionally used to treat general debilities, lower high blood pressure, lower cholesterol, and cleanse the toxins from your blood system as well as to relieve generalized weakness. Mamaki was also used to help people with stomach problems, colon problems, liver troubles, bladder problems and troubles with bowels. It has also been said to help maintain diabetes for some people. Mamaki is naturally cholesteral and caffiene free. The Mamaki tea is mentioned in the Hawaii Diet created by Dr. Shintani. You can eat the leaves raw or cooked for it is a nutritious dark green leafy vegetable. The bark was used to make Kapa (cloth). The fruit of the berry was used as a laxative as well as to treat small children and nursing mothers for thrush. The Mamaki tea and berries were traditionally used to relax tense muscles prior to giving birth.
The natural soothing taste is enjoyed both hot or as a refreshing iced sun tea."
Boy was that tea good! Off to have another cup while researching this important food as medicine!
Montel Williams gets it more than I realized
Last week I participated in Montel Williams Google+ hangout. It was amazing! I've actually never heard him speak even after thirteen years with this disease. And boy was I impressed. Obviously to be as successful as he is and dealing with MS he knows some of the right stuff. And it's not all medical! Montel discussed the importance of living a healthy lifestyle. That every day is a new day with new symptoms and new chances to survive.
This couldn't be more true! I get tired of folks saying, "Oh, you look great, are you in remission?" Noooo. I'm not. But I'm managing every single aspect of my life to keep my disease at bay. This means eating foods that may not taste that great but they are good for you. It means waking up every day and asking your body, "OK, so what are we doing today?" It's about learning to trust your body even though it has failed you time and time again.
How does one trust a body that isn't trust worthy?
This is my biggest challenge recently. Learning to let ego and expectations go. Learning to let go let God. Everyone has a different resource for trust and faith. Mine is God. Whatever yours is, it will behoove you to let go and let life flow like the river it is.
Often I think of a white water river when my MS acts up. There's no point in fighting it. Like the water rushing through the rapids and rocks around. Sometimes you just have to sit down, hold on and shut up. That's what I often do with MS...and it seems to work!
So, #TakethatMS. And here's to a rocking Sunday!
BTW, do not try this at home. Rafting a class IV rapid on the Kern river in a Kmart special without helmets is just plain ignorant. But we were young and professional river guides...
Busy busy with social media
Twitter has become a great family for my MS. Anytime of day or night there is someone who seems to feel your pain. Greatly appreciate the world wide MS survivors whom I've met. Join the conversation @theGirlwithMS. In addition been busy with Facebook at http://Facebook.com/GirlwithMS. Especially those days when the Ms seems intolerable and we need to stay in bed. Don't underestimate the power do social media for our health and well being.
And most fun is that I've been working on MS on the Road, a cross country journey for a couple of friends and horses. 48 states tracking the perfect MS weather and building awareness for #MultipleSclerosis.
Lots to consider. Right now I'm just getting over my second cold in two weeks. Maybe MS is in remission?
Much more to come... off to watch the final four...
Can't sleep! Time to visualize...
Ugh! Had a fulfilling day, good healthy dinner, some wine, fell asleep and boom was awake at 1am. That was nearly 3 hours ago.
I read, caught up on social media, emails and more. Had a couple glasses of water. Legs are a twitching tho and I hate this feeling. Ended up taking half a klonopin but not sure that was best solution. Probably could use some Calm supplement but its in the other room and I don't want to wake up the house. Note to self, "keep Calm in bathroom".
Lemons are another good resource for leg cramps and fitful sleeps. Note to self, "keep lemon juice by bed at night".
So what to do? Visualize!
Visualize and feel the rhythm to rock me back to sleep. Horses of course!
Eyes closed, horse beneath me, I visualize the gait. The rhythm. The movement. I feel the horse and breathe from her the positive energy of life.
Four beats. Hip relaxed. The movement of walking without the effort. It's a blessing, this riding a horse with MS. A true blessing.
Because I ride I will overcome MS. Because I take care of myself I will overcome MS. Because I breathe I will overcome MS. Because I wrote this I will now sleep and overcome MS...
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