Tuesday

GUEST BLOG: Jade learns about managing MS and more!

From our guest, Jade:

When I heard about Genzyme’s “Lights, Camera, Take Action On MS” campaign, I was immediately interested. As the friend of a caregiver for someone with multiple sclerosis, I found myself growing nervous whenever my friend would mention the disease. I assumed that because I didn’t know much about the disease that I had little to offer. Frankly, I was afraid of asking questions about it. My attempts to stick to safer topics had only left a divider between my friend and I. Without hesitation, I signed up for the Houston event, hoping to get an idea of what to say or what to do when supporting a caregiver for someone with MS.

The Girl with MS and author, Jade, meeting up in Houston!

Before the event, my nervous nature kicked in and I was almost too afraid to go into the conference. I was terrified that everyone would ostracize me. I don’t have MS and I couldn’t help but assume that it meant I didn’t belong. However, the minute the presentations started, something resonated in me. I don’t have MS, and I can’t begin to imagine what that would be like. I do suffer from chronic migraines, another neurological disease. I’ve never stopped to compare the two because I always assumed that migraines were nothing compared to other neurological diseases.


When I get a migraine, everything is a struggle. I get so sick that the blood vessels burst in my face. My speech is slurred and my eyes roll back in my head. I’m unable to make eye contact with those speaking to me and often am unresponsive when spoken to. Eventually, I lose coordination, many times fainting, which has resulted in hitting my head more times than I can count.


It wasn’t until the interactive kiosks that I realized how much I understood the disease. It was the seminar on Managing Stress that really hit home. Lifestyle expert Caroline Craven spoke of different ways to maintain a calmer, healthier lifestyle. Like those with MS, I’ve had to keep a plan B in case a migraine popped up. Stress, changes in weather, a simple fight with someone could invoke a migraine. Learning to accept help was another life lesson that I’d been forced to learn. While I’m proud of myself, it’s nice to know that the instance I start pressing on the bone above my eye my husband will grab medicine and water for me. More than anything, when Caroline talked about humans being the same as our smartphones, and needing to power down when our batteries are running low really struck a chord. I know firsthand how planning too much or trying to do more than I’m capable not only wears me down, but causes relentless migraines.


I had spent so much time worrying over what the right thing to do would be that I had never thought of the childhood lesson, “treat others how you’d like to be treated.” I had shied away from offering to help because I was afraid of infringing on self-sufficiency when in reality, all I was offering was a sample of human compassion. I had let myself feed into a stigma of the disease, too afraid to show my altruistic nature.

I found comfort in the MS panel. When MS Ambassador Leslie Cunningham talked about co-workers not understanding side effects of MS (such as being tired despite getting a full nights sleep,) I understood. After all, I’ve taken neurologist notes to previous jobs only to have them regard my illness as “little headaches.”

She mentioned her friends helping her with the injections of medication. Because I’m often unable to keep anything down, the doctor prescribed forced air injections. I know the terror Leslie must have felt, although I was fortunate enough to take my injections sporadically. The medication was forced so rapidly through a glass pinhole that it left welts and bruises on the injection sight. Even mentioning the shots caused me to hyperventilate. Like Leslie, I was unable to give myself the injections and often relied on my husband to administer the medication.


Actress Madeleine Stowe talked about how different the disease and it’s treatment was during her father’s struggle with the illness. Without modern technology, her family suffered in silence. Very little was known on the disease. Even with today’s technology, so little is known about the causes of my migraines. I’ve tried eliminating certain foods from my diet, following a strict sleep schedule, looking for ways to eliminate stress (such as meditation or exercise) and even taking daily medications to prevent them. In reality, my migraines were as sporadic regardless of any type of regimen.


I had gone into the Norris Conference Center expecting a cut and dry answer; say this but not that. Do’s and don’t’s. Instead, I realized that I had the answers all along. There is no simple answer. Each person with MS, just like any other illness, is unique. Even if the offers aren’t taken up, the fact that I offered would mean more than remaining silent. As for learning what to say, I realized it isn’t about what I ask. It’s more about accepting the answer. There doesn’t need to be a reason that someone with MS feels tired. They don’t have to look sick. I traveled halfway around the country in search of a better understanding on multiple sclerosis and instead received a life lesson on human nature. Patients with MS and their caregivers don’t need someone to be there with all the right answers. They just need someone to be there.

Caroline with Madeleine Stowe

Learn more at http://TakeActionMS.com

 

Saturday

Seeking Quiet to Restore Battery

(An earlier post. seems a good time to share again.)

When the body and mind are fatigued to the point of exhaustion, we seek solutions for our Multiple Sclerosis. Some are quick fixes, such as caffeine, sugar, alcohol, prescriptions such as provigil. But what we often need is solid down time. Time for our battery to restore and rejuvinate.

It amazes me, the power of shutting down one's sensors in order to feel stronger with MS. Sensory overload is tiring. It saps the energy from our batteries at a rapid rate. Sensory triggers such as light, sound, movement from people, crowds, events, television, can all effect our MS symptoms by putting our nerves on high alert. And our nerves are already on high alert.

Twenty four hours can make all the difference, even a twenty minute "time out" can help. But these breaks are not easy to find. With family, work, community, household demands, how do we fit in healing time for us?

I had a sad experience this weekend. And one I could have fixed, maybe. My dad and I had a couple of nights at home and mom was gone. We wanted to watch Dallas Buyers Club. Problem is he won't use a hearing aid and watches TV at volume 75. I am sensitive to noise. In addition our television room is not the best set up so you either have to sit pretty close to the tv to see it or far away which is hard on the MS vision. And by the end of the evening my senses are already tired so television is not a good option for me. It was tough. Decisions like that seem small but they're not. MS symptoms effect our lives everyday. I could have worn earplugs and sat in the room with him but I was already having an issue with my MS and didn't want to push it. Bottom lime, no Dallas a Buyers Club and no movie time with dad. We made up for it by spending time in the garden together. Where it was peaceful and quiet.

As the weekend continued So did my aversion to all things noisy. While dad was catching up on his tennis, something I usually enjoy, I found myself seeking the quiet of the garden where the air floated between blue skies and the colors of spring.

How do we find time to heal? We find the opportunity and make choices. Sometimes they are not easy choices but they are important choices. I knew I had an opportunity for quiet time last night. My last chance before my next MSontheRoad adventure which starts tomorrow. And I took it!

After brewing a pot of herbal pomegranate tea with some local lemon and honey, I stretched out on the sofa and fell into a book, Divergent, by Veronica Roth. Pure entertainment. Mindless yet curious, the perfect distraction.

The house, quiet. Through the windows the birds chirp and chatter about the garden. Encased by glass and redwood, I peer over the pages scanning the tops of a deodar and a palm tree through the filtered pink light-shades of the angels trumpet tree.

Angel's Trumpet

For hours I rest. Reading, sipping tea. Closing my eyes as needed. All day until my eyes chose to stay closed which was only about 9pm. After some water and an evening melatonin I slipped into a beautiful, restorative sleep. Waking at about 3-4am to relieve my bladder, sleep was easily found again. A much needed night of rest was had.

When I woke a couple of choices presented. Attend church, (which I often do but missed the last few weeks) or stay in the quiet zone (take advantage of this rare opportunity). I chose quiet zone. I can watch the sermon online which are helpful. But the quiet zone is a rarity. It's important that my battery be fully charged before tommorow. And honestly, it feels pretty darn good!

The day ahead is planned between a mix of quiet and productive time. A few more tasks to attend to before leaving town. Family will be returning so will the responsibilities: dinner, dishes, conversation. The goal will be to use the least amount of battery power while finishing things up. And to take as many "time outs" as possible

Time to do this!

Time to Rest. Relax. Restore.

 

Sunday

Taking action on MS!

How are you taking action on your MS?

Helping others learn what I've learned these last 14 years is my action and I'm loving it. Here I am in Houston helping folks with with MS learn tips and tricks to manage stress and help their quality of life.

After the workshops we received our photo opportunity with Ms Madeleine Stowe, spokesperson for once a day Aubagio for relapsing remitting MS. She does not have MS but her father did. Her stories and experiences growing up are invaluable for us to better living with MS.

Here we are listening to the speaker panel. Invaluable!

I'm on the 15th floor. Funny thing about Houston is the freeway overpasses are the tallest things in use city. Except this hotel, the Fourpints by Sheraton at CityCentre, Houston.

A bit quiet for a Saturday evening. Talk about owning a place. But that's OK. I was at another lovely hotel but it was way too loud for this girl with MS. I moved here and have been absolutely content. Resting, resting and resting.

Saturday evening was beautiful. My view for the evening and again, time to rest and restore the battery.

I'm getting ready to go fishing. Was scheduled to fish with one guide but he got called out of town. I'm waiting for Mark Marmon of Metroanglers.com. Heading out for some carp fishing! Probably not a great day for it but sun is shining and sounds better than a museum or shopping mall. How much shopping can one person do? But fishing...I can do that all the time. Here's Marks website. Heading out in a couple of hours.

And here's to taking action on MS! Helping others and saying "Take That MS"!

 

 

Wednesday

Making Friends with My MS

I spend enough energy being angry at my MS. And what's the point? It just tires me out and uses what little energy I have. I am always looking for those times when I exert too much of my precious energy and see how I can do things differently to preserve this special commodity. To me this is the very tool that helps me manage my MS.

When I received my cool little bracelet from CJFreely yesterday as part of Nancy Davis' RacetoEraceMS program, well, I thought, this is just like a friendship bracelet. And bam, it hit me, time to truly make friends with my MS!

While I'm Not a hand model by any means, I love looking down at this little reminder that I can be friends with my MS. But how?

How do I do this? How do I make friends with a disease that ravishes my body on a daily basis and tries as it it may to dictate my life? This is a tough one.

First off, I'm making a list of things I'm grateful and thankful for:

  1. Learning to ask for help
  2. Learning to slow down and smell the roses
  3. Leaving the corporate world for the creative world
  4. Getting to know my parents as peers and friends by living with them
  5. Learning to ask for help. I could mention this one many times!
  6. Learning to live off a very, very small income.
  7. Learning to be poor with money, rich with life.
  8. Learning who my true friends are and will be.
  9. Learning what my limitations are and realizing they aren't that bad
  10. Meeting lots of cool new people and friends around the world with MS
  11. Knowing that my blog and info has helped at least one person deal better with this disease.
  12. Learning again what is important in life. Waking. Breathing. Living.
  13. Friends and family, couldn't do this without them.
  14. Limitations and boundaries. Learning how to make those more definite.
  15. Turning from a power player to a finesse player.
  16. Learning to listen to my body and respond accordingly

I know there's more but this is a good start this Thursday morning.

I think its good to also acknowledge what I don't like about MS in order to get the full picture. This will help me decide where I can improve in managing my MS.

  1. Unreliable. MS randomness makes it difficult to stick to plans.
  2. Each day is different. Pain, balance, cognitive, tremors, incontinence, vision, fatigue
  3. Inability to drive beyond local streets
  4. Panic attacks for no reason.
  5. Fatigue fatigue fatigue.
  6. Tired eyes, inability to read at times.
  7. Dry heaving, spasms makes it difficult to eat or have appetite.
  8. Muscle spasms at night make it difficult to sleep. Restless leg syndrome bums.
  9. Tremors tremors tremors. Hands and neck
  10. Clumsiness. Dropping things right and left.
  11. Loosing balance. Breaking toes.
  12. Folks not understanding the illness
  13. Randomness of it all
  14. Emotional rollercoaster
Things I've learned to say to myself:

#itisWhatitis

#takeThatMS

#NoTwotheSame

Things that help me befriend my illness:

  1. MS community on Twitter @thegirlwithms
  2. Family
  3. Friends
  4. Writing and the arts. The cathartic process.
  5. Becoming better friends with myself. This is a tough one. I'm not easy on myself and learning compassion for my illness and health is key.
  6. Finding a great neurologist to travel with on this journey. I still need one of these!
  7. Being open and honest about the disease. Building awareness and letting folks know that there are ways to manage MS beyond traditional western medicine.
  8. Research! There is so much new information about MS on social media and in books.
  9. Become my own health advocate. No one is going to do it for me!
  10. My Christian community at church.
  11. Learning that it's OK to take naps and be a couch potato at times. (This is a tough one for me!)

Bottom line, in spite of MS:

I'm living a different life then expected yet a beautiful life with many opportunities and options.

Keep all doors open with this disease. You may have always defined yourself as a "strong corporate, get things done type VP" and then bam, the rug is ripped out from under you.

Time to redefine ourselves. That's what I did. Imagined and visualized all the things I loved in life since childhood. Which of things can I do? What have I always wanted to do and what is still possible?

Fortunately I hade a very full life prior to MS: successful career, horse trainer, river guide, adventure athlete, runner, mt biker, ww kayaker, rock climber and even jumped out of planes.

But that surely doesn't mean I'm done living!

I'm finding out what I can do and what I can't. I think this is a continual thought process with this disease. And while some days I can do some things there are days I can't even get out of bed.

Take advantage of every second and every minute! Even if we are bed ridden, cane assisted, or walking three miles, every part of your life can change with MS.

Get ready to go with the flow and let's do this!

Time to become friends with our MS!

 

 

 

Sunday

Take action MS in Orlando!

Dark from night and lack of street lights the big black SUV waits to pick up its target. Me. Girlwithms. Going out in style and heading to Orlando for an amazing http://takeactionms.com event with fellow life experts and the amazing Madeleine Stowe, spokesperson for Aubagio, an MS once a day oral treatment. Madeleine doesn't have MS but her father did. She shares her experiences living with a parent with MS.

LAX is always a fishbowl within which to watch folks. And that's what I did for over an hour before my flight. Mindless, flying. If you've got a driver and watch and no stressors.

A group of 80 employees from a tech company descended on lax. And they did not look Like techies at all! High, high heels, and all dressed up in black or nude. Spray tans, straight or curled hair, everything looking coifed and perfect. Their voices were a bit like cackling hens but they were having fun. 20 year olds in career mode. I remember those days. So long ago it seems from those corporate days to this life of illness and making every day count.

Sitting at Hilton, having a beer. Tomorrow is our event and I'm on from 9:30 to 2. Then fly fishing Sunday. There's so much to do here and I feel pretty stupid leaving after a day but alas, work to be done at home and more.

So, what's with the MS? It's been mellowing lately, due to stress management and more. Honestly my nutritional intake has been crap. I have nothing to credit my recent success except for stress management. It's been the true key to my recent good feelings.

Well, time to manage some stress!

Off to meditate and to breathe deep. Breathe deep my friend, breathe deep.

Check us out at http://takeactionms.com

Let's do this!

And here we are! At the Hilton Orlando helping hundreds of folks with MS learn tips and tricks to managing stress with MS. This information would have been extremely helpful when I was diagnosed 13 years ago. These events are quite the uplift and inspiration for me, meeting so many folks who understand what I am going through. The dynamics of which are still beating strong the day after.

Connecting with folks who have MS is inspiring. Learning ways to manage MS is inspiring. As Madeleine Stowe says during her presentation, so much has changed over the years. The medicine. The knowledge. It's a different world.

And one day, we will find a cure!

 

Thursday

Join me for an MS morning chat and some free flow movement!

Good Morning World!

MS morning chat and free flow sessions. - Join me! A casual chat about MS and what's going on and a couple of days of watching this girl with MS get moving. The videos got cut off a couple of times. That happens with me. But it's a start and gets us moving in the morning which is what these old MS bodies need.

Please note, I am not an instructor. My free flow yoga type routines are ways for me to wake up my body and get the blood flowing. Sometimes I just chat and swing my arms. Sometimes I fall into a nice yoga flow. Each day different, just like The effects of multiple sclerosis.

Here we go...

Sometimes the inspiration of seeing what I've done over the years, what I couldn't do, What I can do now, it all helps! Everyday is different. Take advantage of the good days!

Honestly I'm pretty wiped put today. I volunteered at the casting club yesterday to spread mulch for the wildflowers. Then helped the folks with a dinner party. Wanted to go to music in the park but family trumped friends yesterday. Next week I plan on going. It's such a fun event and one I can do!

Today it's about getting back to work after the weekend. Using my essential oils to cleanse and purify my living space and me!

Let's do this!

 

Multiple Sclerosis in the News

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