Residency on Amtrak

Even before driving with my multiple sclerosis was near impossible, I've always appreciated public transit. Passively sitting and watching life unfold. Though I'm not sure how passive I am. I write. Take photos. Work on projects. But when I want to quiet my mind I just look out the window. I appreciate this all so much more since getting ill with multiple sclerosis.

Preparing to leave Paso Robles

Currently I am on one of my favorite Amtrak routes: Paso Robles, CA to Glendale, CA via Santa Barbara. The first half of the trip is on a thruway bus then we transfer to the Surfliner train in Santa Barbara. If the train from Paso Robles, the Coast Starlight, is available, I recommend that too as you will see places along the coast and California countryside that you can't see by car. For my commute I end up usually taking the Surfliner train which covers Central California to San Diego. The bus is often used to connect to the train. It is a real nice coach with a restroom, a very important fact for those with MS. This one looks brand new. I settle in, get comfy and start writing away.

The driver is real nice. I offered to lift my bag because it is awkwardly heavy for this trip. But he would have nothing to do with that! A gentleman as he helped me and a young man with some learning disabilities. I don't look like I have MS but this nice man treated me very kindly. Steve. I believe his name is Steve. I see a reflection from his coat pocket. How rude of me not to ask. I often do. Also, is it ok to tip a driver? Not sure. I often try with Amtrak. I use business class and they always take good care of me. Sometimes when my MS is acting up I'll ask for special attention. They always seem to oblige. But just incase, there's always an emergency exit!

Ok, one thing with train and bus travel at this point is that it goes too quickly! We are already south of Cuesta grade. The brownish hills, a hint of green from the rains a couple of weeks ago and the rhythm of the oaks. It disappears too quickly.

On a separate note, I am hungry! Brought a cheese sandwich and some tangerines but don't think we're supposed to eat on the bus. I can wait for the train. I am also looking forward to some hot tea on the train. And will probably grab some processed trigger food at the SLO station, like Doritos with horrible fake orange cheese on them. Not sure why but they sounded good.

We should be exiting the freeway soon. We've made San Luis Obispo and here we go, right at Madonna Inn then off to train station at top of Santa Rosa. I went to university here, at California Polytechnic State U, San Luis Obispo. I lived on Santa Rosa road one year. Got my toes painted pink at The Madonna Inn. Lots of great memories from years ago.
 

Feeling very greatful that I've lived such a full life but I want so much more. To live another 40 years and drink lemonade on the porch with good friends.

I'm returning via Amtrak because I don't drive distances with my multiple sclerosis. I came up with a friend on Friday and was schedule to give a workshop at the Wellness Kitchen in Templeton. Due to a miscommunication we had a small, intimate group turned soul circle. Just what my friend and I needed. Time for a blessing.

Ahhh. Never enough time in SLO! Quaint station built in 1940. The restroom has a code needed to get in. It's 1492. Appropriate for us Americans. Tim the driver has another project so driver Jeff is taking over. There was no Steve. It was a reflection of their logo which says Silhouette. Name tags would be nice.

Jeff got on the radio. We can eat and drink. Non alcoholic of course. Gave us a nice introduction and off to Santa Barbara for the next hour and forty five minutes. Hot tea does sound good...

As I take MSontheRoad out to the country and build awareness for MS, I would like to do much travel via the train. I find it soothing and cathartic. Which is what I need to manage my MS. Life activities that are soothing and cathartic. I'm great at revving my adrenal glands. My yang is thriving! Now to gentle it all down so a fuse is not blown.

The rhythm of the oaks. A soul soother for years. When younger, a university student, I would hop in the car and drive to points country. Away from the city. Along the paved and dirt roads that pattern San Luis Obispo county. I've fished all the local lakes, hiked many of the local trails. That was another life ago. A life I admired and miss but remember with fondness as new chapters in my life unfold. And wow are they unfolding!

Unfolding rapidly in slow motion is how my life is feeling right now. While a bit flustered with not giving my program last night as scheduled, I know it was all meant to be. A swarm of opportunities keep presenting. Seeing the Pacific Ocean as we enter Pismo Beach soothes my soul even more. Seeing the place where I struggled through my last and final foot race is inspiring. And I struggled! But we did it. Three years ago. We've got to remember the little things.

It's easy to think of the little things while on the train. Looking into neighborhoods, into the cities, into people's lives. Seemingly getting to know an area by sight and assumptions. Or making up stories about an old abandoned house or the need for six refrigerators on the porch. Lots to see and lots to miss.

California got some much needed rain this weekend. Everything is a bit more green from the rains back in February but we are dry here. Another storm is expected this coming weekend. I'm not sure what help it did for the snow pack and reservoir levels but we could use every bit we can get. Some areas in Southern California faced some flooding mess but here, along the central coast, the vineyards are wet. The cattle have already been moved out due to lack of food. Sad for the farmers and ranchers.

We need to be especially careful about buying and supporting from our local farmers. We do not need food from Mexico! This is California! One of the best agricultural states around. It would be nice to see Amtrak promote local farmers and vineyards, especially on these routes that travel right through the farms. Especially as we tool our way through Santa Maria, strawberry capital of California.

I'm quite tired but can't fall asleep. I don't want to miss a single thing. The greenish hills. The lack of homes. The cloudy, artistic sky. And the possibilities of what we could see. Wildlife, telephone lines leading to pockets of potential homes. Of stories we will not know.

Heading south it's lovely to see the unaltered lands of the cattle ranchers. While the vineyards have helped with property values, there are just so many of them! Not that there are any cattle due to lack of feed and water. But the soothing hills and oaks, well, they do it for me.

If I was driving I would be tempted to stop in Los Olivos for some nibbles. If friends were with me we may wine taste. Can't really do that on the bus or train. But I will be indulging in my cheese sandwich on the train. And some hot tea.

I slept pretty well last night but didn't feel rested when I woke. Felt wiped out. The emotional and physical drain to get everything ready for last night then to not do it was deflating. This week will be a good time for tea and detoxing. Coffee, as much as I love the flavor is not necessarily the best for me. What is good for me is spending time in the country. And that's what this trip was about. Opening some doors that were not there before. Eventually I want a place to stay in the country, a life that involves more country and less city. I have about two more years in La Canada then a change is near. Maybe before but have a few commitments and it will take me that long to rebuild.

My presence in the country will be my 50 yr gift to me if not sooner. That I will do.

And then, on the train, a story evolves. An older car, maybe broken down, side of the road at a locked gate to a driveway. Two shirtless men removing some Large obtuse object from the roof. Another man sitting at the fence. Flowing plaid flannel shirt unbuttoned. Another man near him. Something didn't look right. Strung out after a hard week of partying? I'll never know but my mind is wandering like a Nick Hornby novel.

Just saw a sign for grass fed beef. But there's no grass. This last storm will produce some for sure but these cattle are being fed. Alfalfa or grass hay I assume. Not sure.

Inspiration. Being chauffeured around by Jeff is a wonderful way to explore the country and brainstorm. To get inspired. To watch a wildlife trail with anticipation. Will I catch a glimpse of some movement? An animal of sorts? And then here comes the Pacific Ocean once again! Oil tankers and the Channel Islands. Still beautiful! Maybe we will see a whale or dolphin. Off to look.

Beautiful but did not see whale or dolphins yet. The rolling oaks disappear and the presence of Monterey cypress and bougainvillea alerts you that Santa Barbara is coming up. There are many ranches over here and many surfers. Ronald Reagan had his ranch near here. There are quite a bit of Avocados, citrus and other crops along the coast.

Quite a few campgrounds along the way for both campers and RVers. I would enjoy that too. Traveling around with a friend, camera, and camp around the US. There are many placed I've been but so many I haven't been to!

I'm wanderlusting a bit. Springtime and I want want want. Want what? Newness. A life more than what I've got. I'm selfish and my ego wants petting. I have so much but yet at times I am not content.

Seems like I'm always searching. For that balance. For the energetic life I lived. To feel fulfilled.

I'm going to take a moment at the fig tree at Santa Barbara train station. Its huge. One of the largest Morton bay fig trees. Massive and impressive. Its grooves and limbs intertwine as the chapters and stories in my life. It's all I got, my stories. I won't be having children. I have nephews, bless them, but what I've got are stories. Interesting, the lives we choose to live.

Time to leave Santa Barbara. Via train. My bag is heavy this trip but hauled it up stairs to the second floor. The server cam by with a snack and drink request. Few minutes later the nice conductor lady came by and scanned my eticket. Amtraks using eticket and QR codes to operate more efficiently. Gotta love this.

The conductor said she hadn't seen wildlife this trip yet in the ocean but we both commented on whales, dolphins and otters seen in the past. This year is supposed to be good for whales. Will have to plan an MSontheRoad whale watching trip!

Cruising the coastline. Surfers. Water. Pelicans in formation. Can't write. Want to watch. I turned my head for a few and missed a great photo of strawberry pickers. And there they are! Dolphins! Two of them. My day is made!

And good thing because we are now heading inland a bit. We will go through some major agricultural areas and then back to Los Angeles or Glendale to be exact. Still stuff to watch but the ocean...she is a gone...

Agriculture succumbs to housing. Development expands. Signs of times past and times to come. Tooling through Moorpark. Wouldn't mind coming back and exploring all of these stops more. I remember Moorpark from horse eventing years ago. The facility is no longer there but the memories have not faded.

Entering Santa Susanna pass with a layering of rocks that make Wile E Coyote and the Road Runner wanting to appear around every bend.

My mind races. The scenery has worked its magic and calmed things down. But my entrepreneurial mind is having a blast with all my options. Why was I feeling so blue earlier? There are lots of doors opening. Time to walk through them.

Self portrait on Amtrak

This might be an issue. Allowing me to ramble on endlessly as I hope for an Amtrak Residency to happen. But how cool for this GirlwithMS? My dream. Cross country. Camera. Writing. MS awareness. The USA.

Let's do this!

#takethatms

 

 

 

 

 

Follow us on the Road!

Join us on the road at http://MSontheRoad.com as we travel through California! Having fun with three girls with MS. Learning and enjoying the area and each other.

Just a few thoughts to kick off this beautiful day!

 

Raising Funds for MS Awareness

Hi all! For those not familiar I have chosen Nancy Davis' foundation, The Race to Erase MS, as my charity this year to help raise money and awareness. I'm raising an extra $1000 for this project. While it might not seem like loads of money, it's enough to make a difference and a reachable goal. If all of my friends donated $10 we'd be well over $1000! It adds up quickly. Click here for My personal fundraising page.

The foundation raises funds for the Center without Walls program. Click to Learn more.

Taken from their website:

Center Without Walls - Program Overview

“The Race to Erase MS wanted to build a winning team so we sought the best and the brightest throughout the world to create the Center Without Walls program.” – Nancy Davis

Funded by the Race to Erase MS, the Center Without Walls program (CWW) has provided support that has permitted the medical community to link together multidisciplinary scientific programs and expertise across the country to advance the understanding of the cause of MS and to develop new treatments. The Center is a break-through success because of the vision, insight and flexibility of these extraordinary doctors.

The Center’s theme is simple: communication – doctors working together toward a mutual goal. When this goal is reached, all will share in the victory.


Keep up the great work Nancy and team! Let's do this!

 

Planning for a great event this Monday!

Looking forward to seeing some old friends and meeting new ones in Templeton next week at the Wellness Kitchen.

What would you want to hear about at this workshop? Post comments and join the conversation!

 

Friends, Road Trips, Forgetting About MS

Sometimes it just seems necessary to forget I have MS. Put caution to the wind and just enjoy life. Not worry about what I am eating or doing. What the weather is like. What the activities on the agenda are. Just to forget and live the moment free and clear.

But please note, that while I put caution to the wind, I did pay a price with my MS. Came home to a several day detox and boy did I need it! A couple video clips after the weekend, a morning chat and some free flow movement.

Throwing caution to the wind is tough to do with an Autoimmune disease always nagging at your heels. There is always something I could do better to manage this disease. But sometimes you just want to say, TakeThatMS! While it may not be the physical solution to your problems, it may be the mental solution. That's what it felt like to me.

This past weekend I took advantage of schedules, friends, good weather and fun times, driving north to central California coast via hwy 101.

Quintessential California coast, train tracks, strawberries ready for harvest, palm trees and Santa Barbara off in the distance.

We took a quick pit stop at Refugio State Beach with its magnificent display of Palm Trees.

As the Hwy winds away from the ocean and up and into the valley we are devastated by the lack of green. Not surprised, but very sad. The drought is wrenching havoc on our agriculture. Most livestock has been moved to wetter grounds.

Then we headed to the quaint town of Los Alamos to Bedford Wine Tasting. We met Stephen, the owner, and had a nice local chat about.

Some amazing chalk art at the winery and a little taste of spring outside.

The next day we headed to Creston to see a long time friend and cutting horse rider, Patti Bello, at her winery, B & E Vineyards.

Yes, while it's fun to throw a little caution to the wind, I did pay the price. Junk food, eating out, wine tasting. Just a couple of days can change you. I felt quite inflamed after this weekend. No doubt, right?

Now time for some healing and anti inflammatory action!

Pomegranate tea, detox tea, Bragg's apple cider, Shentrition and mung beans make for an MS healing diet. A couple of days of this and I feel back to new!

What a great time with friends, Playing games, celebrating Valentines Day. Not being forgotten.

Yep. Friends, road trips and just being free for a day or two can make a real mental difference.

Now it's back to work and managing my MS. Lets do this!

 

"New Food = a New You"

Girl with MS is coming to Templeton, California, March 3 at the Wellness Kitchen:

Caroline Craven, Girl with MS, presents "New Food = a New You", an interactive workshop introducing nutritionally sound foods to help manage Multiple Sclerosis.

Join us as we engage together and learn to thrive with MS through nutrition and mindful eating. We will review a variety of MS friendly foods and evaluate your dietary choices to see if you're living at your optimal best.

Caroline Craven, a graduate of Cal Poly, SLO, is a certified holistic nutrition educator and life coach, residing in La Canada Flintridge, California.

RSVP by Feb 28th to the Welness Kitchen at 805/434-1800

 

MS on the Road

Follow along on some of my adventures at MSontheRoad.com

Today, it's all about keeping it Spoice....

Sometimes I travel or stay local but another little piece of me on my life with MS. It's just fun stuff. Join along!

 

Doctors should be here to help, not stress

As those who have been following know, I've had some issues this past year with my neurologist. My lovely doctor of 10 years retired. The one who saw me at my worst. The one who diagnosed me. For ten years we worked on finding ways to thrive with my Ms and not suffer. We used nutrition, yoga, meditation, and more. We reduced stress from my life. It became a daily part of my life not much different than a diabetes managing their insulin. Managing the MS battery takes effort. The result: MS symptoms waning. So shouldn't this be a good thing?

I was referred to a neurologist upon her retirement. I attended her for three years but was getting frustrated at her inability to answer questions or to help me. She referred me to a neuromuscular specialist in her office and mind you, this was just last summer, I was told that their office didn't have my medical records from my diagnosing numerologist. Never could find them. So, this doctor had been treating me blindly for three years. No wonder she didn't know anything!

So another round of tests and MRIs to replace the ones that were lost and then lo and behold, my records were found! As soon as I went to yet another new neurologist thinking I would get some answers, they "found my records". It took two letters, at least six phone calls and two months for those records to make it to my house upon which I sent a copy to the new neurologist. This was twelve years of my history and I don't think he even read it. He reviewed a few charts at my last visit, laughed at me when I asked for my regular jury summons release and basically scooted me out the door in twenty minutes. With NO answers just more questions. He is not convinced its MS because I don't present as physically as others? Wtf? I look good, been taking care of myself, therefore I no longer am ill? What about my daily issues? Cognitive thinking, pain, fatigue, balance, vision?

I am so stressed by all of this. On top of it all he put down on my records that he thinks I'm bi-polar and have mental issues. Well, who the heck doesn't Have some mental issues with MS? It's an emotional roller coaster. Do these doctors know anything about MS? Who certifies these quacks and why do they even take patients if all they're going to do is run tests and laugh at you. I've never been so humiliated in my life. Between his visit and reading his notes I received yesterdefay, well, yes, today I may be bi polar! Crazy, mad, sad and depressed all at once. Funny thing is I felt fine before starting with this doctor. Here I thought he was going to be the answer. But FAIL!

Luckily I have a great Plan B. I got approval to see Dr. Weiner at USC and then I'll be joining a doctor down there that focuses on multiple sclerosis. Enough of these wack jobs.its just a matter of scheduling. At least it some peace of mind.

I have spent well over $2000 this year on doctor visits, MRIs and tests. Were they necessary? If the doctors had my medical history would they have needed to run all of these again?

Bottomline, good doctors should not be allowed to retire.