On January 3rd 2011, I went in for my 8th MRI since my diagnosis in 2005. This was also my first MRI since going off drugs in May 2010. All of my previous MRI results leading up to this one have either shown progression (new lesions in my brain and spinal chord) or inflammation on the original lesions.

Lesions or "plaque" found in the brain and/or spinal chord in MS patients represent damage to the myelin sheath. This damage is what slows or delays message transmission causing a large variety of symptoms. My most severe symptoms to date have been numbness/burning/tingles/weakness in my left leg, loss of bladder control, fatigue and loss of vision in my left eye (most recent). The only symptoms I am experiencing and have been for the past year is some vision loss in my left eye and minor numbness/burning sensation in my left leg. The fascinating thing about this disease is that no two MS patients are ever the same.  

I am very happy to announce to you today that after 9 months drug free and 6 yrs since my diagnosis, my MRI showed no inflammation in my current lesions and no newly formed lesions. This is my best result so far and I'm sure you can guess my answer when my neurologist asked if I wanted to go onto Rebif, an interferon injection with a risk of liver damage.  :) 

What an MRI result looks like:

I believe that until disease rates decrease and there are known causes and cures to the currently prevalent diseases (like MS), it is hard to believe that a known toxin, fluoride, is safe in small doses. Fluoridating our water is extremely high risk to our health.

Currently our city spends over $750,000 per year adding fluoride to municipal tap water. Hmmmm...

Help make a positive change before this Monday to influence our city council to take a vote to stop fluoridated tap water in Calgary.

Learn more:

Our new mayor, Naheed Nenshi has asked Calgarians to speak up to prove that the majority of us do not want Fluoride in the water...

 As many of you may have heard, I have been working hard on a new and exciting project over the last few months. In November 2010, a group of close friends and I incorporated the Branch Out Neurological Foundation with the goal of raising funds in an effort to help diagnose, treat and cure neurological disorders. 

On June 25^th 2011, we will be holding the first annual Branch Out Bike Tour, a one day 100km ride held in Panorama, BC. Please check out the attached Bike Tour invite (below) if you are interested in participating, volunteering or donating to what is sure to be a highlight of your summer!

branch out email invitation.pdf (727 kB) 

***For more information please visit: www.branchoutfoundation.com***

Crystal Phillips

President

Branch Out Foundation

*Money raised through Crystal Patches will continue supporting MS patients to get liberated AND towards the Branch Out Foundation."

Last Sat, Dec. 18th, I skated my first personal best time of the season with a 40.71sec 500m.

Other than the same vision issues, I feel healthier and faster than ever :).  That time was yet another motivating factor to stay drug free and continue my healthy eating and thinking regime.

Happy Healthy Holidays!

A Few Nutrition Tips for the Holidays:

-Take some full spectrum digestive enzymes before and after large meals and/or drink a glass of water with pure lemon juice 1/2 hour before large meals to help optimize digestion and avoid a Santa belly.

-Drink cinnamon flavoured tea to help reduce sugar cravings (Celestial Selections- "Bengal Spice" is my favourite)

-Have fruits and veggies as convenient to eat (pre-cut with healthy dips) as the caramel popcorn, candy canes and Christmas baking.

Hey Everyone! I would like to start by saying that I apologize for the problems with my website. For some reason, crystalpatches.com only works on firefox but crystalpatches.webnode.com works on the others. I am currently working on getting this fixed but am told it might take up to 60 days!

Secondly, I would like to thank all of you who bought Crystal Patches for Christmas presents! Here are a couple of my moms latest creations:    

I have been writing less these days as my competitive season in speed skating has started, making me extra busy. I just returned from Quebec City for the 1st of 4 Canadian trials. Despite the unpredictable and ever changing weather, we managed to complete the competition. I had a rough start with my first 500m, 1500m and 1000m but things seemed to come around on the last day and I pulled off a great 500m and 1000m, finishing 8th and 5th.

As for my MS, I am still drug free (over 7months!) and did not have any symptoms during the whole competition. I am, however, feeling quite a bit of numbness, burning sensations, twitching and nerve pain down my left leg post competition. This is normal for me after exertion and with a little extra rest, chiro and massage, I will be back training and feeling good in a day or two.

For those of you have never watched me or anyone speed skate before, here is a video of my 2nd 1000m where I finished 5th with a time of 1.23.95 in some pretty challenging weather as you will see....

*I am the skater on the outside lane in the blue and white skin suit.

My next competition will be in Calgary at the Olympic Oval (indoors) from Jan. 6th-9th.

Cheers!

Crystal

Ok, enough about me ;) The following is a blog entry that my dear friend and big mountain skiier, Izzy Lynch, wrote on her website (https://www.izzylynch.com/) about her and her boyfriends incredibly inspiring story.  Grab the tissue box for your happy tears... 

7 Months

If seven months ago someone told me by next ski season I would be leaving the place I had set down roots and called home for the past two years, driving to Vancouver eleven times in six months or walking away from a job that I loved I would have probably wondered why. If they said I would be helping the boy that I had just climbed across the Columbia River with -on underside of a train bridge – get in and out of bed, open his drinks and buckle up his seatbelt I would have been really confused. If I was told I would experience some of the most real and life changing moments along the way, I would have never have guessed they would go like this…

columbia river at night

April 11th 2010 is the day that marks the beginning of this journey I never imagined for myself. It was the last day of the ski season in Revelstoke. Spring was here, snow was slushy and familiar faces gathered on the mid mountain patio in the late afternoon to drink beer and reminisce about the season past. I sat surrounded by my friends, ski boots undone, celebrating the sunshine. I distinctly remember the 6 foot 3 bear hug I got from one sparkly-eyed person in particular that afternoon…. Jeff showed up—as usual with a huge smile on his face dressed in his favorite three-piece denim suit and a giant belt buckle.

As far as I can remember the first half of April 11th was one of the best I days I had all season. The skiing was nothing to brag about but there was a buzz in the air and friends were a plenty. Late afternoon, the lifts were about to close and a crew of us went back up for a last few runs. The group was fast and we flew down the frontside groomers to make it in time for just one more. I raced myself down, slid into the corral at the chair and spun around expecting to see smiling faces right on my tails.

Revy spring ski

My last lucid memory of that day was a panicked scream from another friend to get the ski patrol because Jeff was hurt. No more than a hundred feet from the bottom of the run, he had gone huge off one of the rollers we had all hit countless times before. A split second decision to take the familiar air just a little bit bigger that resulted in a caught edge and the most gut wrenching words I imagine I will ever hear from a friend.

“I can’t feel my feet.”

I remember waiting in the hospital with a collective of concerned friends for hours and hours to get an update on Jeff. I had convinced myself that it was just a bad concussion and that sooner than everyone thought we’d be by his bedside giving him props and reliving the wild afternoon we had just had. Suddenly rumors of air lift to Vancouver, and spinal surgery whispered through the crowd. “Only six hours before his chances decrease significantly” we were told. Chances? Chances of what? I refused to let my mind wander to places that it wanted to go and instead went home, packed my bags, set my alarm and went to sleep.

The next morning I was in a car with two other friends driving to Vancouver. We arrived and reality slapped us in the face. One dislocated, two broken vertebrae, a damaged spinal chord.

…..

It had been three days since I watched Jeff get hauled off of the side of the run and I was overcome with concern and had a million things to tell him. I wanted him to know we were all there and how commanding the love and support that had generated over the past few days was. My heart nearly jumped out of my chest when I was finally able to walk through those heavy ICU doors.. My first sight of Jeff was scary. He lay, tubes in and out of everywhere, swollen hands, and surrounded by burn victims and trauma. Flustered, I stood beside him and blabbed and squeezed his hand unconsciously, blinking back tears and trying as hard as I could to project all the positive energy I could muster. Regardless of his apparent discomfort and my inability to make any sense, he blinked and nodded and smiled behind the tubes in his face in response to whatever I said. I left exhausted from the intensity of those few moments…knowing I had just witnessed the fragility of our charmed lives… and suddenly things were going to be very different.

The big picture. Post surgery Jeff wasn’t moving, or breathing or swallowing on his own.

Looking closely. He was on a ventilator. He had pneumonia. He needed to cough, but couldn’t, so nurses were pounding on his chest in intervals to relieve his lungs of fluid. He couldn’t talk, but through blinks and nods and with the help of an alphabet board held in front of his eyes, he communicated his needs.

Now back up. News traveled fast and at a moments notice the waiting room at Vancouver General turned into a reunion of friends, friends of friends and family. People sat, and talked, caught up and reminisced, passing around books and rocks and pictures and stories. The hope and love and compassion in this room was powerful.

Back in Revelstoke people came together in incredible ways. Golf tournaments and fundraisers were being organized, resources pooled, care packages put together, t shirts sold. I started a new job forest fire fighting on an initial attack crew in Revy on May 3rd, a position I had been anticipating all winter. I applied mostly because I was inspired by stories of hard work, great experience and friendships from my friends who fought fire. Jeff had helped me prepare for my interview and gave me an idea of what to expect on the job. At first workdays were hard because I could not shake the thought of him motionless in the hospital while I was outside moving and talking and eating and working. I spent long hours on the fireline with nothing to do but replay the events of the past few weeks feeling very helpless and far far away.

worktime

Then, I met Jeff’s crew, and snapped back into myself. The crew, a twenty-person mash up of some of the most genuine life loving and selfless people I have ever met, had just been transferred to Revelstoke and timing could not have been more perfect. Before I knew it we were cramming every possible activity that we could into each day we weren’t on fires, climbing, bbqs,volleyball games, soccer, longboarding, cliff jumping, gardening, and dance offs. Jeff was missed and talked about regularly and it seemed like living for each moment and celebrating the sunny days was the most productive thing we could do while our friend was so far away.

hit the streets. a few of the Monashee crew

super hero, super old skool, super awesome.

jump!

happy!

Meanwhile in the hospital, Jeff was having a hard time swallowing. By a hard time I mean he couldn’t so every drop of water and saliva that entered his mouth had to be suctioned out by a device at his bedside. He was fed through a tube in his nose, and alternating suction and a wet swab in his mouth were simple things that kept him sane.
Jeffs family was together, every single day. Someone was constantly by his side when he needed water or suction. Day in and out they never dwelled on the struggles but instead lived for the little things like chewing bubble gum, listening to music, reading cards, looking at photos, telling stories and togetherness. Fire season was off to a slow start so on the weekends that I could make it back I went to hang out with Jeff and his family. Together with whoever else was visiting we did all that we could to celebrate simple pleasures and momentary relief. In the spinal ward I witnessed visitors who would enter Jeff’s room, devastated by the news of the accident but leave every single time with a smile on their face. I don’t know how he did it, but his ability to live in the moment and appreciate every person who dropped in was comforting to friends when they needed it most.

Jeff’s sister Linds was amazing and spent nine long weeks by Jeff’s side and relaying the events of every day to the rest of the world on facebook. Week after week, hope for news of any progress kept masses of people checking in religiously. On week nine I’m sure the six hundred members of the Feelin’ the love support group breathed a collective sigh of relief when we read Jeff had swallowed for the first time.

Conquering the swallow test marked a huge shift in Jeff’s recovery. He transferred out of the hospital and into GF Strong Rehabilitation Centre. Suddenly he was responsible for using the resources at GF to get back to life. He charged forward in every way he could and in a story Jeff just wrote he chalked up his experience at GF as “mind crippling, toothbending, muscle numbing, heartwrenching, hard work”. That and more. It is incredible thinking back to the first few weeks he was there, fifty pounds lighter and a bag of bones. A few times we sat blissfully celebrating our ability to swallow by eating ice cream outside in the sun. He would strap a spoon to his hand and every spoonful he would get into his mouth was another monumental victory. It only took a few bites before his muscles would fatigue and he would need help. He did all that he could to feed himself, but when he couldn’t he would smile and shrug his shoulders, open his mouth wide and wait for another bite….

northern bc wheelchair brigade

There were times when I wondered if the frustration of relearning such basic things would get to Jeff, but he picked his battles wisely and never dwelled on silly things that were out of his control. When you live in an institution like GF a lot

of things are out of your control. This steadfast ability to focus on the present, hold on to his witty sense of humour, determined, calm and contemplative approach to life is what has blown my mind the most. Taking it one day at a time, he has overcome mountains of physical and mental challenges and wrung the life out of every moment that he could along the way. In almost seven months he has starting from scratch, regained the ability to brush his teeth, get dressed, feed himself , make pancakes, transfer himself in and out of his wheelchair, sign his name, hold a cup, he’s bought a van, camped out, partied onstage with Pennywise, roadtripped to Revy, inspired most of the town to cut mullets, taken over the streets with eight best friends in wheelchairs, bought a new house, won the hearts of nurses, doctors, physiotherapists and social workers in GF (and me!) and made some incredible new friends along the way….

playin some b-ball outside the skool

in this season.. the mullet.

To say this summer has been easy would be a lie. To call it a relentless string of invaluable moments marked by discoveries about life, the people in it, myself and what’s really important would not be far off. As challenging as it has been, this journey has fed my soul in ways I could have never imagined.

Change, is said to be the only constant in life. Seven months ago I was content as can be, skiing my life away, in a place that I loved, coaching an amazing group of kids with many opportunities on the horizon… I’m not sure exactly when the decision was made or precisely how it happened but in one week I will be living in a new place in Whistler with three amazing people I wouldn’t trade for anything. Winter is approaching as quickly as the last one ended and I am more grateful than ever for the privilege of being able to pursue my goals with the freedom of skis on my feet. I’ve always considered myself fortunate, but after watching someone I love endure nine long weeks without swallowing even a drop of water, lose function of everything below his chest, live in a hospital for months on end and still smile at me at the end of the day I realize how blessed I truly am. It comes down to being near the ones I love, friends and family, in order to feel truly complete. For now, Jeff is facing life as a quadriplegic. I cant help but be baffled by his strength and wonder how I would survive a day in his shoes the way he does… but as every blink of our eyes brings something new, I’m positive each day will build into progression and victories that we’ll all look back on and say.. “if seven months ago you told me……………….”

heyyo Whistler!

"Live for today" https://www.izzylynch.com/

On May 1st 2010,

I decided to go off "Copaxone" AKA "Glatiramer Acetate", a daily injection that I was on for 5 yrs to help reduce the severity and frequency of MS attacks by 20-30%... maybe. There is no real way of knowing if the drug is working since all MS patients are different.

As I am sure most of you know, I lost vision in my left eye (optic neuritis) due to my MS  which spawned the Crystal Patches campaign to help me raise money to get tested for CCSVI, a controversial new finding by Dr. Zamboni from Italy, linking a vascular disorder with MS. Losing vision was actually a push for me to follow through with my goal to go drug free. My neurologist, Luanne Metz, would probably be disapointed to know that she is a big reason why I decided to finally make this scary and lonely choice.

Why did I go drug free?

I went drug free for several reasons. If I sound a bit bitter, it is because I am....

Reason #1:

Since my diagnosis, my neurologists have often made it seem like an MS patient has no control over this disease as it is completely unpredictable. They focus on how serious this disease is and how ugly an MS patients' future can look like, especially if you do not go on the drugs prescribed.

Now remember, I am not saying this because my profession is in the natural health field nor am against ALL pharmaceutical drugs and medical doctors. I am speaking through my personal experience as an MS patient who cried many tears after hearing the fear tactics that my Canadian neurologists have instilled in me and after taking a daily injection for 5 yrs with little to no improvements with my disease (i.e.- new lesions in my brain and spinal chord were still appearing on MRI scans and I was still experiencing minor relapses and many symptoms).

In MS, you CAN take control and be proactive in aiding your body to heal itself. You DO have red flags that your body screams at you before going into relapse. You do NOT have to rely on drugs and expect to sit back and do nothing other than cross your fingers in hopes that they work.

Reason #2:

When Dr. Zamboni's publishings on CCSVI became public, you could not even call the MS Society OR the MS doctors or MS nurses to ask questions about it, even though stories of MS patients going from wheelchairs to walking post-Liberation Treatment became more and more prevalent (Donna, the lady who went to India with me had amazing results).

When I saw my neurologist, Luanne Metz, to talk about my optic neuritis, I asked her opinion about CCSVI and the "liberation treatment". She immediately shut the idea down with excuses like "there is a strong psycho-somatic effect with the Liberation Treatment", "I do not reccomend it and do not see any point in researching it further."

Well, maybe it is a psycho somatic effect and not the final answer or cure for MS, but is it not worth pursuing when results seem to be so amazing? And if Luanne Metz, the other neurologists and MS pharmaceutical reps really believe that the liberation treatment is an effective placebo, then why are they trying to get me on liver toxic drugs ("Rebif" specifically, a drug that you have to take monthly blood tests because of potential liver damage shown in the clinical trials)? versus prescribing me an unharmful sugar pill? Or better yet become a psychologist to enhance the psycho-somatic placebo effect?  The point is, after that appointment I decided to not only get tested for CCSVI but to also go against what Luanne prescribed and go off all drugs.

Reason #3:

After my diagnosis , it was not until I started eating and thinking healthier that I really noticed huge improvements with my disease. I was able to train full time again and even qualified to race in the 2010 Olympic trials, finishing 10th in the 1000m long track. I give no credit to Copaxone, and 100% credit to diet, lifestyle and my friends and family who have given me so much support along the way!

Reason #4:

Copaxone costs about $1500 a month! I know this sounds pessimistic but what pharmaceutical company who is making that kind of money wants to find a cure? Especially since you do not necessarily die from MS, meaning you could be taking those drugs for a LONG time.

Reason #5:

Taking a daily injection that causes pain, bruising, swelling and hard lumps...sucks.

Reason #6:

Going off drugs will force me to be extra proactive and keen on finding alternative remedies for multiple sclerosis and overall health

How Am I feeling 6 months drug free?

I am relapse free since going off drugs!

I am back training full time with lots of energy, strength and working on getting my endurance back (started training later than normal this year so have a bit of catching up to do).

I lost vision in my left eye while on Copaxone and it has not fully come back and may never. I still find it very interesting, though, that I have 80% vision when my heart rate is under 100bpm but within seconds of exercising and my heart rate goes above 100bpm, I lose almost 100% vision again. This occurence is what still has my hopes up that there is something vascular going on and that I may still be eligible to get the liberation treatment in the near future. My tests in India showed that my left jugular vein is half the size of my right....maybe this IS the cause. I'm determined to find out. 

My next MRI is in January 2011 and will be the real test to see whether my disease is progressing, staying the same or dissapearing since going off drugs.

Would I Ever go back on Drugs?

I am not ruling that possibility out, but for now I am happy and feeling healthy off of drugs. There is still a lot of great research going on and new promising drug therapies but obviously my guard is up so it will have to be a pretty convincing study for me to go back on.

How do I treat my MS naturally?

I do not think there is one treatment for all MS patients which is why I do individual nutritional consultations with all of my clients (do not only work with MS patients). However, Dr. Ashton Embry has done amazing work and has had very successful results with his dietary and supplemental reccomendations for MS patients. My diet is similar to his reccomendations that can be found at direct-ms.org. If you or someone you know is interested in an individual nutritional consultation or to have me to a nutrition seminar you can contact me at crystal_phillips85@hotmail.com or 403.200.0494.

Cheers to a healthy future!

Crystal Phillips

Oopsies.... 4 months  and not 3 months off medication (at the time of the speech).

Thank you to all those who watched my videos. I definetely bounced all over the place  throughout the talk but look forward to continueing and improving my public speaking skills and hope I was still able to get my message across. Any constructive critisism is more than welcome!

Cheers to a healthy future!

Crystal

*Crystal Patches Day WAS June 10th

    -next Crystal Patches Day is TBA

-My friend Allie who I am sponsoring to get the liberation treatment has planned to go to Albany, NY for the surgery in the the new year. I will keep you updated.

 Kelly and Remple waxing Denny's legs at the Crystal Patches party!