There is so much to cover with this title which is why my new book is in production! But in the meantime take a look at these comments and tips. Most of them are linked to articles that I have written as a Patient Expert, Health Journalist and Life Coach.
Become an MS Warrior
1. Take a deep breath. It will all be OK. You are in for a change, but the levels vary for everyone. Just know that things will get better and life will continue. MS hits everyone different. It will be important to be very compassionate toward yourself and your life as this disease unfolds.
1. Find a good neurologist – an MS specialist.
2. Understand you are going through a change.
3. Emotional balance may seem to slip away – seek help.
MRF's are choices we have control over. Things we can start or quit depending upon our needs. While none of these in particular cause MS, there is substantial proof that the following actions are beneficial for MS patients:
2. Start a hand-written journal. Handwriting is great therapy.
3. Build your support team. Write down who is on your “Team”: friends, family, doctors, pharmacist, nutritionist, massage therapist, yogi, God, whomever works for you. This list will grow and evolve during your MS.
In just two weeks, Gala ticket in hand, it became game on for this girl with MS. Complete with orange carpet, the 24th Annual Race to Erase Gala is an event not to be missed. From Hollywood movie stars to MS Celebrities, the Beverly Hilton was packed with folks wanting to make a difference. And make a difference they did!
The actual money raised for Nancy Davis' Center without Walls MS Research is not yet known, but one car went for $290,000 at the silent auction. Wowza!
My escorts were amazing. As the MS took hold of my legs and made me weeble and wobble, out of the blue came an arm and a voice, "Here, walk with me." Whew! I thought for sure I'd topple over at any moment. And who was this voice? None other than MS advocate Paul Pelland, aka @longhaulpaul. Well this was convenient. Two MS advocates walking the orange carpet. Woot woot! Yes, we are in La La Land.
And then walks down David Osmond, who I got to meet on the phone during an interview a few months ago. But we had not met in person. Finally! And well worth the wait. David who lives with MS does so much to help build awareness.
When Chicago is playing for a private party at the Beverly Hilton a good time can be expected. Add the bonus of Quincy Jones, David Foster and Siedah Garrett. It was the tops!
Not only does this Race to Erase MS raise awareness for MS but it raises a significant amount of funds for MS research. On Saturday, the day after the Gala, there is an MS Forum which has become one of my favorite events. Ever.
The MS community is family. The hope and inspiration found at the MS Forum is contagious and is greatly appreciated by this MS patient.
A lot of great information was shared by the MS Forum.
The panel included medical specialists: Peter Calabresi, M.D., Adam Kaplin, M.D., Ph.D, David Hafler, M.D., Daniel Pelletier, M.D., Nancy L. Sicotte, M.D., Emmanuelle L. Waubant, M.D., Ph.D., Howard Weiner, M.D., Vijayshree Yadav, M.D.
Those living with MS on the panel included Nancy Davis, David Osmond and Arnetta Hollis.
Claudia Hurry Hill, living with MS for over 32 years, was the moderator. More on the forum to come. ____
The Gala was quite amazing. And prepping for it was even more entertaining. After arriving at the Beverly Hilton we ventured over to Neiman Marcus for their amazing popover, consommé and glass of rose before moving on to the Chanel counter to replace some make up. Natasha from Chanel worked her magic and provided my face with a much needed professional touch as well as replenished some product for later use.
In prepping for the Gala, much fun came from the dress shopping and the hunt for accessories. Just the right look was of importance. Orange is the color of MS but it's not necessarily the best color for me. Also, when one is searching the internet for gowns and evening wear, there are a lot of choices. Especially when one starts looking at designer and/or vintage gowns. But where was that one dress that would work the best?
Several friends and family in the industry suggested looking at Rent the Runway. After a simple search, several orange gowns were found. And while my body is usually quite easy to fit, the thought of not being able to try it on was a concern. So a dress that fit easy and was soft and fluid would be perfect. And a dress in a softer shade of orange would be even better. It did not take long for RTR to produce the perfect dress. Easy to wear, and comfortable! Thank you RTR and Solani dresses for this optimum look.
Once the dress was chosen, time for the accessories. OK, if the budget matched the choices, I could have spent $1000's of dollars getting ready for this gala. Tinsel town was on my mind. But instead went for a slight bohemian feel, allowing for fun, costume jewelry.
A friend and I hit the stores. She's also my stylist and I highly recommend her. Contact me and I'll connect you two. We hit almost every TJ Maxx, Ross, Zara and H&M within a ten mile radius and found everything we needed and wanted. We even found back-up options and a back up dress incase they are needed. Whew. This is coming together quickly and easily.
The Gala was extraordinaire! Of course staying at the Beverly Hilton is a treat in itself. Love this place.
After a lovely day, and an even lovelier evening of food, drink and good cheer, this Girl with MS is inspired and energized.
I can not thank Nancy Davis enough for all she does to help everyone with MS. The research provided by her fundraising is invaluable to our wellbeing.
I Love this time of year - Easter, spring, renewal, hope. I find it a lovely way to say #takeTHATms! In order to do that best this year, opted for bunny ears and a trip to Descanso Gardens to see spring in full color.
The bunny ears are keeping me focused during this busy time. Seems like there is so much going on! Life is at it's fullest and the days are getting longer. Being silly helps me to stay positive.
I've been needing a new ID bracelet showing that I have MS. Saw these bracelets from MyID the other day and was like, man, I've got to get me one of those!
They're really cool looking, and look basically indestructible. I'm excited to get mine in the mail. But it was difficult to decide which color and design to get. Many cool options.
I spoke with MyID and they are giving one winner a bracelet of their choice as a way to say #takeTHATms.
Enter here for a random drawing to win a free MyID medical bracelet.
There are two basic designs, the MyID Hive and the MyID Sport. And then there are additions you can make, customization. Color, sliders, information. Sliders are these little metal ID tabs that slide onto the bracelet. Especially important if you suffer from more than one illness, which many of us do.
There is one thing certain with my Multiple Sclerosis (MS) and that is to help as many people as possible learn to live better despite their illness. This includes helping the medical industry find answers. Helping others provides a purpose in life and allows me to say #takeTHATms!
One company looking for answers is DxTerity, which is developing genomic tests to help people with MS better manage immune-mediated diseases. They are currently recruiting people with multiple sclerosis for a unique research study called EMPOWERStudyMS.
EMPOWERStudyMS is collecting blood samples from MS patients across the U.S. to help identify biomarkers and other gene expressions among patients; what is termed genomic testing.
If you’ve been diagnosed with MS you can join this groundbreaking research to help researchers develop an at-home blood test to monitor MS disease activity.
Click here to learn how you can participate. I did.
Participating in the study is easy and can be done from the convenience of your own home. You won’t have to visit a clinic at all! Answer a few health surveys online and collect a few drops of blood with a simple, fingerstick collection kit. Drop the kit in the mail and you’re done.
Caroline Craven @thegirlwithMS opens her kit and explores the contents for her EmpowerStudyMS kit.
Compared to all of those daily injections I used to take for my MS, the finger prick was a cakewalk.
I pricked my finger, collected blood and sent off my sample. Easy peasy for the most part.
My problem was that my blood did not cooperate as best it could. The instructions were clear but fear my cognitive fog kicked in a bit and caused some problems. My fingers did not warm up properly and the blood barely trickled out to be collected. The second lancet was good to have but I should have waited till my hands were warmer. I am not sure enough blood got collected but we will find out. The folks at EMPOWERStudyMS were very nice and are sending me another kit so we can confirm a better collection.
I greatly appreciated the human connection for all of my questions and answers. This is a research study, and we are “just a number” but you would never know that by the kind of service being provided. Feeling quite special to be a part of this important event!
During the intro video I got the blue lancet mixed up with the blue collector container. But got it straightened out when it came to it.
One of my mantras this year is to be part of the solution, not the problem. I am now part of the solution. You can be too!