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"

Ask Dr. Ellen Lathi

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.

----

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...

 

 

Bath tub yoga after a fun filled Night!

Ah, Valentine's Day is upon us. Last night we had 12 for dinner and it was lovely. Old friends and all couples except me. But that was A OK! Laughter and good times were had by all.
 

But man can I feel it today! There must be several fault lines going off in my legs with tremors reaching a good 6.7 on the Richter scale. I've had several glasses of water and some Passion flower tea to calm the nerves. But alas, bigger measures are needed.

Time for bath tub yoga! Yes, that's how this girl with MS gets her day moving. After a quiet morning of prayer and meditation then reading of a novel (The Great Leader by one of my favorites, Jim Harrison), my day slowly progresses into electronics including twitter, blogger, emails, Facebook and more. And then....Bath Tub yoga time. It's amazing how much stretching one can do in the tub when muscles are soft and pliable.

I start by standing outside the tub as the water starts to flow. The sound is pleasing and inspiring to me. I turn on some music. I pray and open my heart and soul to the earth and sky to feed and nourish me. And then begins the Qigong breathing and swirling exercises. Slowly as my body awakes, I flow into some deeper stretching then slip into the tub.

Squatting on my heels I slowly stretch my legs forward releasing the quadriceps with care. Stretching tall and backwards, gently, the quads are massaged, a bit like taffy being pulled back and forth, letting go of tensions and anxiety held within the body. Releasing from this pose I scuttle to my bum.

Crossing my legs "indian style" I fold forward into a modified pigeon, switching legs so as to stretch the hips on both sides. Then with feet out in from of me I fold forward grabbing my big toes. Then breathing in I reach forward with my neck and back looking upward toward the heavens while sending energy to my hamstrings against the tub floor. On the exhale I fold over, relaxing my legs and feeling the compassion between the moment of flexion prior to the settling in of my bones within its flesh.

Breathing. Aware of every nerve. Of every muscle. Where does my body need the help?

I might take a twist. One leg extended in front. The other folded up with knee to chest, simply twist to left or right, sitting tall and looking up or back. Every move in the tub is done with deliberation and intent. Be slow and aware. Do not push your limits. This is the time to connect with your inner resources for the day and see where you stand, literally.

Outside the tub I continue my practice. A bear hug, more pigeon, wherever my body seems to need it. Or my mind for that matter.

Shoulders are a good on inside and outside the tub. You choose. I'm just the inspiration.

In fact, I'm off right now to do some bath tub yoga and get my day on!

 

 

Passion Flower Tea for Sleep...will it work?

Has anyone tried Passion flower tea for help with nerves and sleeping disruption? I'm looking forward to feeling the results!

Found on LocalHarvest.org - "Passion Flower Tea Benefits have been recognized for over 200 years by Native American Indian tribes as being effective in sedating and calming the nerves. Traditional medicine practitioners also widely acknowledge the painkilling and blood pressure lowering properties of this herb."

Off to brew...

 

Chinese Medicine Experiment on Tremors Days 1-7

Day 1:

I've worked with several doctors specializing in Chinese Medicine and have had good experiences. So, why not try it again?

The benign essential tremors in my neck became exacerbated and I need help. Help beyond a pill.

Interestingly I look back and see what I changed last summer. I had stopped taking my Shentrition. I came a bit low on funds and held back. First time in six years. At least six years. Well, the Shentrition is back in. But I need a booster to get me going.

Today I start a seven day tea regime after receiving both Chinese massage and acupuncture. Tea is not the correct word. Herbs maybe is what they used. "Drink your herbs. You look much too old for your age." Thanks, cause I was actually feeling really good.

After a pulse exam where the doctor reads ones pulse for several minutes, I'm told I have severe arthritis in my body and its rejecting the cold weather. I need warmth. But more importantly my kidney yin is in trouble. And the negative energies were pulling my thinking mind down, suffocating it while destroying my life.

Ok then, What do I do? Thus the week of herbs. And not any herbs but pretty pricey ones. Each day is $17. Dump the herbs in a mason jar, pour a cup hot water on it. Drink half of it thirty minutes after breakfast and half of it thirty minutes after dinner. I may have poured a bit more water. It smells a bit potent.

As I taste the mixture it becomes familiar. Ive had similar tastes during an herbal detox program. Not horrible. And if it does the job then super dandy!

It will be interesting to feel the effects.

This morning I took the herbs after a pleasant walk with a dear friend, some good healthy eats, bath tub yoga and some inspirational time. Feeling the love right now.

Will keep you posted.

Day 2:

Well that was interesting! Not sure what is remnants of flu and what is from herbs but talk about a body flush. Feeling great this morning. Still having tremors but could feel a subtle calm and cooling effect in my body after herbs. Feel like I actually need more. This may be an expensive habit but if I could build my blood tonic and kidneys, Ill be ready to kick some MS booty!

It tastes like fermented tree bark. But I'm craving its goodness. Off to make some for this morning. Had my Shentrition already. Plus some fruit and water. Having a lovely and productive morning but glad I'm. Not too far from the toilet!

Days 4-6

Feeling pretty darn amazing! Grouping these days as they have all been pretty similar. aware of very nice settling sensation in my lower back. And a calm sense Throughout. I feel content and sensitive to toxins again. A couple of beers and I was done! Ready for water and herb tea. I like this feeling!

Day 7

The tremors are still here but i have felt a change since the Herbs. They are spendy but I wish to continue them another week or more. The anti inflammation qualities are pleasantly addicting.

In addition to the Chinese herbs I'm taking "Calm" magnesium/calcium supplement, Standard Processes' Catalyn and a vitamin B/C complex. And today I started the Standard Processes' kidney detoxification and support, "Renafood".

Looking forward to feeling more positive effects with these supplements.

Catch you on the flip side...