Arrived safely near Beaver Creek, Oregon. Love this place. Love this family! My view from my room.
Reunited...me and the Pepper puppy pony.
We had a great homemade pesto and salad dinner last night. Thank you Melissa! And Bill served us a beautiful wine. Stunningly beautiful....
And Tucker Dog! He slept on my bed all night until I woke up and he felt it was ok to go upstairs. Such a guardian.
We're expecting a big storm. Lots of rain. Will mess up all kinds of fishing but...there is plenty to do. Right now I am off to take a walk with Sue and her friends, camera in tow. There's been a lot of wildlife activity. Maybe I can capture some. But I am out of photography practice! This will be good.
If in Oregon, on the coast and it's not raining, it's time to get your rear outside and enjoy! Then plan for certain pastures to flood and prepare accordingly.
Packing for my first adventure for MSontheRoad was a bit more than I thought it would be. First, we've got the potential horse back riding. Not a big deal but need boots, spurs and helmet to carry the gopro camera, as well as protect my noggin.
Then comes the photography. I stripped it down to one Dslr body and my 100-400 lens plus batteries, SIM cards etc. in addition we've got the GoPro camera with accoutrements is packed. Not to mention the handy iPhone.
Still doesn't sound like that much? So add some fly fishing gear, a vest, net, ties, tippets, etc. this is making for a very full carry on bag. Another bag is being checked. Of course the plane was so small out of Burbank that it had to be gate checked. Pencil plane.
My folks gave me this card this morning. Wow! Love my folks! Totally feeling the love!
Of course with the pending rain and cooler temps, my checked bag seems to consist of boots, boots and rain gear. And three hats! I couldn't decide.
I'm sitting in San Francisco International Airport, sipping a beer and waiting for some grub. I enjoy this airport and used to fly through here a lot on business. Now its just a treat. And I'll take treats all day long. Happen to be at a gate near the Anchor Brewing restaurant. Yum! This is always my northwest downfall...rich, dark, tasty beer! And the fire roasted quesadilla didn't hurt one bit.
And there is something truly magical about airports. Maybe its the possibilities. Knowing that you can go almost anywhere in the world. Wow! And so many places I want to see....
In fact I'm so psyched about this trip that my mind is racing as to where else I can visit. So many possibilities!
I'm really digging this whole MSontheRoad concept. Explore the world. Explore MS programs. Spread the word. Oh yeah!
So psyched! I'm planning my first MSontheRoad adventure and leave in two days!
MSontheRoad is the travels of this girl with MS promoting MS awareness around the world. On this first trip we are traveling to a 500 acre spruce ranch not far from the Oregon coast outside of Seal Rock. The ranch belongs to a good friend of mine, Sue. We met at a barn a few years back and I ended up training a couple of her horses. Our friendship has grown ever since.
She has a new horse for me to ride, Phil, photographed below. I trained a half sister of his, Pepper, and love the disposition and athleticness of this line. Nice, stable horses.
And not only do we get to play with ponies but the steelhead are running. Haven't even seen a fall steelhead run in over ten years. And the salmon are in. One of the ranch hands, Quip, will show me some secret spots. He's going hunting before hand so fishing may comes later in the trip. But wowza! I'm so psyched.
Not my fish but let's get inspired:
The folks just bought me a new fly fishing vest for my first MSontheRoad adventure and a few other odds and ends that could be helpful. I've fished mt whole life but fly fishing not as much. And I love it. The whole process from tying flies to enjoying the wilderness.
I went on a bit of a binge last night and tied a bunch of crazy flies last night. Started having too much fun exploring a wooly bugger pattern and had some wine and well, some crazy flies! Sometimes fun trumps practicality.
I don't have gators or proper boots but that can come later. Ill just imagines the young men in "river runs throuhg it" and fish with what Ive got. I just like being where fish are. Ive been researching and reading a lot the last couple of days, everything from expected hatches in the area to fly tying to gear that should be in my arsenal.
In addition, I am getting photography and horse gear together. My good 100-400 L series lens is a bit wonky with focusing. Didnt take it for repairs in time but am taking the camera as is. In addition I will take my GoPro camera and tripod. I like to wear my gopro when I ride as it fits great on my helmet. I'm thinking gopro with tripod will be good for other video needs. The iPhone rocks for quick vids and uploads.
Here are some of my photography from earlier visits to the ranch: photography
And I just heard from the director of the Oregon State University's Multiple Sclerosis Exercise Program. It starts next Wednesday and goes from 11-12. I'm heading over at 10:30 to chat with the director and then participate in the program. Then maybe Sue and I will go to lunch. Corvallis, Oregon, is a great little city.
I'm looking forward to meeting this group and seeing what great work they are doing!
I am Feeling so blessed as to how everything is working out. We even have a birder friend nearby ready for some siteseeing and photography. As im writing this i. Waiting for an MRI of my brain for my MS. im giving up an hour for that disease but the rest of the day is mine and its da kine!
Wow. Just lost my entire post. Was having issues with the videos. Hit one button on computer and lost it all. Nothing would undo. Frustration!
But wow, my adventures to Reagan Library on Wednesday were wonderful. We are heading there to celebrate my fathers birthday and to see a special exhibit on Lincoln including a lunch where Abe himself comes and speaks. He must have slept in Tupperware. Very preserved after all these years!
First things including assessing this MS body. What am I gong to need for a few hours walking in a museum, the drive, plus the subsequent activities throughout the rest of the day.
Had time for a little chat and free flow session before heading west.
I don't drive much in the highways since my MS for various reasons. So today I'm being chauffeured by my folks. Not bad at all...family time and no driving!
Arriving at the Reagan Library is always a treat.
Entering the gardens...
And always a treat - The Berlin Wall!
A small tour of the wall, the view (or lack of it today) and parts of the garden:
After an incredible lunch, beautiful exhibit on Lincoln and a very large life like head of Abe, time for a tour of the garden and memorial site.
One of three signed Emancipation Proclomations. Thank you Abe!
Wow! what a moving exhibit. And my Ms stayed at bay. I survived! And I thrived. Often I can't keep up with my folks but today I could. Here they are by the fountain. Today, MS couldn't take me down.
Wrapping up the library and preparing for some gardening time before the required events for the Chamber of Commerce and for dads birthday dinner.
After reading my doctors reports on me and I wonder who they are speaking of? It says here that I'm symptom free. Oh really? Why am I in bed, legs on fire? Why is my right hand not wanting to work? Why is it that I'm weak and out of balance today? why is my eyesight fidgety? Why are my spasms and neck pain so bad? Just because I looked great at my last visit doesn't mean I am great.
This is a report from my new neuromuscular specialist. She has nothing to base my history on because my neurologist doesn't have my medical records (they just informed me) and the ones they do have are not accurate. I do not talk about every little MS detail or I would be in the office all day. Not to mention that I've had the same symptoms going on for years. I can manage them to a point. But reading all these errors about me. Saying my life is a dance on the park. This is just so wrong!
Doctors are supposed to be your advocates. They are supposed to do the right things.
The report said I denied having insomnia. Night sweats. Fevers. I have these all of the time. And it said I denied a chronic cough, swallowing problems and sore throat. Hello? I've had chronic bronchitis my entire life and its be really bad lately. Swallowing, gagging and other issues have plagued me since my illness.
I want answers. I have two more MRIs coming up. Brain and cervical spine. According to the doctor's report I haven't had an MRI in five years due to insurance copays. So not true. The doctor never asked me to get one.
The report says I refuse any more medicines? Like what? They've never offered me anything. They've never even discussed medicines. Why should they? According to them I've been exacerbation free since the 1980's. twenty years prior to my diagnosis. Wow. They have ESP.
3:45 am. Typical it seems. The night I go to bed at a reasonable time, around 10pm, and bam, I'm fully awake five hours later. This has been going on for years. And often in a bed of sweat and chills. As recently as last week. Today, not so much. Maybe due to an alkalizing day yesterday. But I'm not in the clear. While my legs are not on fire there is a low simmer percolating throughout them. Fibromyalgia the doctor called it. "Goes with your MS". And neuropathy. Nerve pain. It all mixes for a nice medley of extreme invisible discomfort.
I find this all interesting as I review my medical records over the past three years. Some recent background: My diagnosing neurologist retired in 2010. I was referred to a new doctor. Recently I found out that my new neurologist has supposedly been treating me without knowing my medical history. According to their office, they can not locate my ten years of medical history nor have they ever seen them despite earlier acknowledgement that the neurologist new my case.
As I review these last three years of records I'm not sure who they are suppose to represent. The notes mention how well I am doing, how well I am sleeping and that I have had no exacerbations since the 1980's. I find this last point hilarious since I was not diagnosed until 2001. Not to mention my name is spelled wrong. There is no mention of the four weeks I spent in bed in 2012 and the numerous issues I've dealt with over the past few years. So, not only is my entire MS history gone on record, the files I do have from the last three years are erroneous.
There is also no mention of my throat and soreness in my neck that has plagued me these past few years. Nor my many questions about the possibility that my zoster virus is causing the soreness in my neck. I saw an ENT twice during this time. Everything checked out but with a history of chronic bronchitis and more, there is always need to be concerned when it comes to my throat area.
Around the final record comes mention of benign essential tremors. Since I started seeing this doctor I've been asking for help with these along with my increasingly bad neck spasms. She finally referred me to a new doctor. The only good move she's made to date.
As I'm looking at these erroneous reports, I realize that they have been faxed to my internist. This needs to be cleared up immediately. Two doctors working off wrong information. So more letter writing on my part. More phone calls on my dime. More things to think about at 3:45am
At one point my doctor said, "Well, you look great. And you said you felt great." Well, compared to ten years ago and not being able to walk or see unassisted, I am doing great. But they don't know my history. They have no idea what to compare me to. For three years they let me think they knew my case. They could have taken the time to read my blog. It's not like I'm hiding my story.
Had a great full day yesterday and am paying the price. Went to church and breakfast with the family. Then recorded a small blessing of my own, remembering the importance of my faith when I was first diagnosed.
Then off to a friends book signing at Vromans Bookstore in Pasadena. Author Patricia Olson wrote Tall Jay, a story about blue jay with legs too long...yea, I can relate with my MS. Sometimes you just don't fit in.
Temperatures reached the mid 90's which for MS can be quite tiresome. After a little relaxation, we played our nightly card games. Cocktails and cards at 5. Dinner around 6. Jeopardy at 7. Pretty routine but its nice to spend time with my folks who are a very lively 78 and 81.
After a run of Mexican gin the folks gave me a few bridge lessons. There's a lot to remember in bridge...
Well it was all enough to make this feel like a true Monday morning. I made the mistake of taking half a klonopin this morning when I woke up. Thought it was about 3am but it was closer to 6am. Klonopin helps with muscle cramps and other MS issues but it creates fog brain. And I don't like fog brain. So here I am, slowly waking up the mind, body and soul. Getting ready to take this day by the horns and run with it!
Today I let caution to the wind. Went to a movie screening for a great documentary called "Walk On" and then to a feeding fest at a local bar with friends.
Walk On is a beautifully produced and directed film about a young man's challenges of being born HIV positive. While its easy for many to think that HIV and AIDS are not the threats they once were, we need to think again. Did you know mothers are having infected babies when it could be avoided? Social stigma around HIV has not yet been swayed. This is time for a change.
Each person in this film faces diversity with great strength and admiration for life. Two aspects we need every day with our battle against multiple sclerosis. While it doesn't take much caution throwing to watch a film, it does take it to live life to the fullest. To take the hand we are dealt and make a winner out of it.
Wile pondering the effects of being a winner we decided to go to a local eatery and bar, Fat Dog. Ok the name alone says what kind of food it is and it sure isn't MS friendly!
Started off with a pint of Mission IPA. Added some fried olives, jalapeño Mac n cheese w bacon and a braised short rib sandwich. Ok. Wow. Way too much heat. Way too many calories. But oh it tasted good!
Then, I came home, made a cup of Chinese detox tea and warm lemon juice, watched some silly television (NCIS LA) for a bit. Played some on my ipad and gently fell to sleep around 9pm. Which is probably why I popped up wide awake at 230am. Time for some water, breathing, meditation to calm the angst from yet another doctor mix up and more. Time for venting on the blog. Time for easing my angst by writing and breathing. Thinking of those that seem less fortunate yet have the upper hand on me. So much to learn from these folks. From life. So much....
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