Saturday, July 31, 2010

Opening Ourselves Up

When Learning About Others Teaches You About Yourself

Last installment in the Face of MS series.... 

It’s hard to distinguish guilt from grief.  And too often, it is easier to project our emotions onto those we love to try to protect our vulnerability.

I feel guilty that I can’t do everything Rob does.  I feel that he deserves someone who can.  But he accepts me as I am.  Why can’t I?

I still grieve the person I thought I would be.  No, let me rephrase that.  I grieve the career I thought I would have someday.  But without the totality of my experiences, I would not be doing the meaningful things I do today.

I am very lucky.  I touch people.  I help to shape the future of children through music.  I use my words to reach out to others.  People reach back to me.  I make a difference.

And...I need to forgive myself for having MS, while staying open and vulnerable to the joys and opportunities THIS life offers up to me.  Thank you to everyone who has helped me to see that.  I am truly grateful.

Read this post in its entirety:

The Face of MS: The Vulnerable Patient

Thursday, July 29, 2010

Carnival of MS Bloggers #68

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Takes A Village and the Americans with Disabilities Act


There are always at least two ways to do everything. Right or wrong. Good or bad. Alone or with others.

I like to do things with others. In fact, I am certain that my life is better because of all the people in it. I can say with certainty that as a person with a disability, my life is also easier because of all the people in it.

If I need help, someone is there to help. If I need someone to talk to, someone is there to listen. If I need a laugh, someone is there to play with or share a joke. When I am there to listen to someone else, than I know that I am of value to another person.

Having people in your life and being involved with others is a great reminder that you are alive and worthwhile. It can also help one forget about their troubles for awhile and that is always a good thing.

I recently read an article about isolation (InsideMS /Healthy Living / Isolation) that was written by my friend Alison Dale. It turns out that isolation is a pretty big problem in our MS community and is often a problem for anyone living with a chronic condition. I am guessing that it is a problem for many people without a chronic condition as well. (Isolation can lead to depression and that can be a serious problem. If you or someone you know suffers from depression, please get help.)

There are many reasons why and how a person becomes isolated. Some may have to do with physical limitations or disability. Some with fatigue and sometimes it is just the belief that no one understands or cares. Whatever the reason, isolation means being alone and being alone is no way too spend all of your time.

If you are alone and don’t want to be, do something about it. Call a friend and invite them over. Go to church or temple and find ways to get involved there. Join a club or service organization. Volunteer. There are hundreds of ways to get involved with others and millions of nice, caring people in the world. Finding them is not difficult. It just requires a little initiative.

If you are not a likable person, become one. Learn to ask questions of and about others and listen to their answers. Practice gratitude. Say hello to strangers and learn to smile. You will get back what you put out and will soon find that you have created your own community.

If you are not alone, go find someone who is. Make a difference in someone else’s life. You will both be glad that you did.

Life is better when you have people to share it with. For some people that may mean marriage or family. For others, it may mean friends or belonging to a group.

Having a full, rich, meaningful life requires people to be in it. In my case, it takes (or at least I have) a village.

Participate. Make a difference. Live a life that matters.




MS Activists Attending the White House ADA 20th Anniversary Celebration (left to right): Bill MacNally of Minnesota, Patrick Vanderpool of New York, Channing Barker of Oklahoma, and Jackie Jackson of New Jersey


(left to right) MS activists Channing Barker of Oklahoma, Patrick Vanderpool of New York, Shawn O'Neail, Jackie Jackson of New Jersey, Bill MacNally of Minnesota, and Shahieda DaSilva of New Jersey

On July 26, five MS activists from around the country were invited to the White House to celebrate the 20th anniversary of the Americans with Disabilities Act (ADA) being signed into law. The ADA established a clear and comprehensive national mandate for the elimination of discrimination against individuals with disabilities, guaranteeing equal opportunity for individuals living with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.

The invited MS activists were able to hear President Obama in his remarks give due credit to the grassroots origin of the historic law, stating that “It began when Americans no longer saw their own disabilities as a barrier to their success, and set out to tear down the physical and social barriers that were.” Click here to view the full video or read the transcripts of the ceremony.

President Obama also shared his personal experience and the strength of First Lady Michelle Obama’s father, who was diagnosed with MS yet never missed a day of work and kept moving forward (viewable at approximately minute 33 of the full video). Ongoing efforts to ensure that the ADA realizes its full potential were also highlighted. These efforts include newly issued regulations from the Department of Justice protecting disability-based discrimination and requiring all new buildings to be compliant with 2010 accessibility standards; upcoming rules that will promote the accessibility of websites; and the launch of the Year of Community Living initiative to uphold the principles of the Olmstead court decision and community-based care.

The celebration ceremony concluded with President Obama signing an Executive Order that establishes the federal government as a model employer of individuals living with disabilities—with the goals of better recruitment, training, and retention.


President Obama at the ADA 20th Anniversary Celebration


MS activists Channing Barker and Patrick Vanderpool with Senator Tom Harkin (IA)


by Trevis Gleason

I’m not going to lie to you. I began writing this blog over the weekend and it was supposed to be posted on Monday. I’ve had a very difficult time trying to find the right angle to address this week’s 20th anniversary of the Americans With Disabilities Act (ADA).

There can be no doubt that the law has changed the very face of cities in which I’ve lived, sites I’ve frequented, and constructions projects with which I’ve been involved. I have also seen how non-compliance can adversely affect people more severely impacted with mobility issues than myself.

How, though, have the pages of this important legislation, now two decades old, had an impact on me?

I remember living in New England back in the 1980s, when our nephew would visit in his wheelchair, and how difficult old buildings and curbs without cut-outs could be to navigate. We learned to look at things with a whole new eye, a “less-able” eye (I should thank Jason for that opportunity. It has paid dividends on the dividends!).

I have also seen utter indigence on the part of many when shortcomings are pointed out in construction plans or when costly accommodations must be made – hell, they needn’t even be costly to ruffle some feathers.

I’ve only ever worked for one company that would have been considered large enough (some subsidiaries are even designed to be too small) to be required to comply with ADA regulations.

At this point in this piece, I should point out that I haven’t really had much need for the accommodations provided in ADA. Quite frankly, the days that I’m in that much need, I’m not likely to leave the house anyway…

But I do acknowledge that many things I have benefited from wouldn’t have been there were it not for the ADA, even if they’re not actually in the regulations.

Would cities really have concentrated so much on para-transit? Would everyone else in my community give off to the person who parks in a disabled space without sticker or need? Would the community even see as many people using walkers and scooters and chairs were it not for a 20-year old law which has made it easier for them to live a life out in the town?

I don’t know, I don’t really know, how my life has been directly impacted by ADA. Possibly many of you feel the same way, as a number of us have been diagnosed with multiple sclerosis far fewer than 20 years.

Maybe that’s the beauty of such a law; it has changed the very fabric of our country to the point where all of the changes begin to feel like the norm.

As we take a few moments to reflect on a law that (know it or not) has changed the country for all of us, I’d like to know how the ADA has changed your community, your life… your life with MS.

Wishing you and your family the best of health.
Cheers,
Trevis


This concludes the 68th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 12, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, August 10, 2010.

Thank you.

Comments for this post.

Tuesday, July 27, 2010

Welcome to the MS Blogosphere

Please welcome the following new MS blogs and bloggers to our community. The list is long as it's been two months since I last posted a "welcome" post. There have been so many new blogs go up from people interested in CCSVI.  If you know of some I've missed, please let me know.  Thanks, Lisa

My Phoenix Flies Again by Mark and Yumi
My name is Mark Lampman. I’m a native of Southern California but have been living in Japan for longer than I care to admit. Fate would have it that here is where I met my wife, Yumi, in early 2000.

Yumi is a well respected medical doctor practicing abdominal surgery here in Tokyo. Our lives took quite a turn when Yumi was diagnosed with Multiple Sclerosis (MS) in the spring of 2005.

We’ve been fighting MS now for 5 years, and we’ve won. Here, we want to trace the details of our battle and encourage people who have the same illness by looking back on this miraculous victory, and if we can become a ray of light in the darkness to our readers, our blog has been a success.

We feel that while we enjoy the benefits of current medicine, it’s  also important for each person to take steps where they can to improve their well being. By this we mean adjusting our eating and lifestyle habits, our actions, developing our mental sense of security and cultivation of the mind.
Meandering...One Moment Please by Karen
I have strong opinions regarding just about everything. I don't think like the majority of society, and I am often misunderstood. I definitely march to the beat of a different drummer, and although this often irks others, I am not bothered by it at all.

Oh ya..I also have Multiple Sclerosis, but I am really only in it for the parking permit :)

I came across a Victor Hugo quote " Forty is the old age of youth; fifty the youth of old age". I like that! I am now entering the youth of my old age! A journey into a new life stage! I think it will be quite a trip. I'm going to meander along the scenic route, because life is all about the journey, not the destination.
Devic's Disease by Sara
I was diagnosed with Multiple Sclerosis on October 29, 2009 and started Copaxone on November 7, 2009. On June 22, 2010, I learned that I actually have Devic's Disease (NMO) and not "typical" MS. After learning that, I made an executive decision and stopped taking my Copaxone on June 27, 2010. Currently, I am on no medications for NMO but am seeking a second opinion from the Mayo Clinic in Arizona.  
Jodi Bean's Blog by Jodi
I am a daughter, sister, auntie, friend, social worker, volunteer, scrapbooker, photographer, reality tv show watcher, shopper, crafter, ice cream loving woman. On September 28, 2008 I was diagnosed with Multiple Sclerosis also known as MS. MS is a part of me but there are so many other "labels" that define me. I live a full life with MS and this blog is to share my journey and hopefully raise awareness about MS to help find a cure in my lifetime!
Doc, It Hurts When I Do This.... by Kim
Having taken turns writing for radio and reference books--and cranking out an unbearably serious first novel--I'm now exploring the lighter side of life: Having MS.
A Life Coping With MS by Catherine
My name is Catherine and I live in Derry, Northern Ireland. After being diagnosed with Multiple Sclerosis in April 2009, I decided to write down my thoughts on how life is, living with MS. Essentially it's about coping with an condition that has no boundaries. No two days are ever the same and no two people with MS are the same either. This blog is merely my thoughts on how MS can affect my daily life. Along the way, I will also touch on other important aspects of what I'm doing - after all, having MS is about LIVING with the condition, not being ruled by it.
Mommydom With MS by Nikki
I am a mommy, a wife, and a worker-bee stumbling through everything Multiple Sclerosis. When I say stumbling through I mean that literally! I make it through with the support of my husband, the joy of my son and the humor to laugh at myself.
Liberate Me! by Shara
Life is a funny journey. For me it has come with my fair share of ups and downs. It's my contention that it's what you choose to do with those ups and downs that separates the "victims" from the "champions". I think this is a concept I learned early on as a competitive alpine ski racer, unlike some sports that are artistic and open to interpretation, my sport of choice was cut and dry; the fastest one to the bottom wins! This created a black and white contextual choice- do you want to win or do you want to loose. I've always chosen to be the winner; it's more work but it's more fun, in my humble opinion too.
The Lesion Journals by Christie
My name is Christie and I am 40 something years old. Back in July of 2009, just after finishing a great bike ride, a good part of the right side of my face, neck, and shoulders went about 80% numb. Naturally this freaked me out but we initially attributed it to a pinched nerve that likely resulted from incorrect positioning while cycling. The feeling remained for 10 days so I got an MRI.
I Used to Run by Cynthia
I feel like an old woman, I'm sharing woes with my Aunt! I've been fortunate for 14 years with MS and have only spent the last two years going downhill physically. I no longer can walk or stand for any length of time. I'm lucky to have been very active in my youth and early adulthood I thankfully can look back with some satisfaction over the things I've done and places I've been. 
Vein Musings by Sandra
I was diagnosed with MS in 1992, although my symptoms started in 1980. I was diagnosed with CCSVI in March 2010 and treated July 7, 2010. My symptoms are improving, which is why I created this blog. I am so fortunate to be a wife to Landon, a mom to Jon and David, daughter to Irene, sister to Jim, Rob, and Wendy, and friend to many others. I am a PhD student at SFU completing my dissertation on social media and learning. The rest of my story isn't written yet.
CCSVI {M}annananny's {S}tory by Linda
I am committed to see the MS world at large to be educated, motivated and enabled to receive this lifesaving procedure. A new era of excitement and anticipation has arrived for the patients suffering from this insidious disease. The time is now, the need is critical.Let this be the end to the {M}aster of {S}uffering for all of us.
Now What? by Gothicrose
This blog serves as my log book, a diary of sorts, in my new journey to discover if I have CCSVI. I have created pages (the tabs shown above this notice) that have information I have come across through research and discussions with others. Each tab is a page and each page shown in a the drop-down menu structure holds pages within pages, so before going on to a page shown to be under or next to another, click on the tab-or page first and then click on the next page you are interested in. Enjoy.
Diagnosis and Treatment of Multiple Sclerosis by Leyla
My name is Leyla Taymoori. I am a pre-med student hoping to one day become a doctor and help as many people as I can! I am all for alternative treatment before prescription medications. I believe that everyone deserves the best quality of life possible and I hope to help as many people in my lifetime as I can!
Hope Love & Miracles CCSVI Journey by NBenes
So there is no guarantee that this procedure will work miracles for every person with MS, but a large portion of the recipients are reporting at least a mild degree of improvement in some aspect in their lives. I continue to fight, hope, and pray that CCSVI diagnosis and treatment WILL be offered in our province.
Hope - My CCSVI Journey by Sarah
OK so I've kept pretty quiet about how I'm doing because I didn't see the mega miraculous results some others did. I still found some benefits that for anyone with MS and the load of symptoms I've had a relief from, release of anything is amazing!
 My CCSVI Liberation Procedure by Karla
I am a 39 year old mother. I have a son, Avery 14, and a daughter Raine 12. I have been married for 16 years. I was diagnosed with RRMS in 1994 and now I have progressed to SPMS. Thankfully, I had the chance to be Liberated in Sofia, Bulgaria on April 30th 2010. The doctors, everyone who cared for me and the country of Bulgaria will always hold a special place in my heart!!
Life and Liberation by Dawna
My journey with MS and CCSVI in the midst of my quest for Liberation. My appt. at the Euromedic Clinic is set for May 20, 2010. This contains the log of my feelings, both physical and emotional, so that I can look back post-procedure and chart any changes that have occurred in my walk with MS.
Travels to Bulgaria by Tessa
I have MS (remitting/recurring) and am at the end (hopefully) of an exacerbation I have recently stopped being vegan based on the recommended MS diet (see www.direct-ms.org) - being formerly vegan was not an ethical decision, but a health choice. Having learned from Dr. Embry's research on MS & diet & just an intuition thing.. I'm jumping into his NO wheat/gluten, NO dairy, NO soy, NO beans, NO legumes, limited eggs, diet. This does NOT mean NO CHOCOLATE or NO VANILLA - they are called "beans", but they are in fact seeds - YAY... Now it'll be cashew butter instead of peanut butter! No more "real" beer either (they do make gluten free beer... rice - it's not bad if you drink it from the bottle - if you pour it in a glass, it looks like bad champagne... so I drink it from the bottle & "pretend") Thank God Vodka is potato based! :)
Tisa's MS Liberation Experience by Tisa
I was the first person to have CCSVI done in the State of Arizona. I am hoping to help many others find their liberation.
CCSVI Journey by Angela

Hoping for the Best by Gina
A chronicle of my journey into healing my body from the affects MS has had on me over the last 20 years. I am hopeful with the findings that "CCSVI" is a probable cause of the plaques (iron deposits) in my brain and spine, along with the reflux of blood, causing disability and a general "hitch in my giddy-up" as I heard one guy put it. There is a very simple procedure to help me and thousands of others that are dealing with MS. To start at the beginning scroll to the bottom of the posts.

Monday, July 26, 2010

34 Pounds and 17 Inches

Time for a progress report as we enter the 3rd quarter of this year.  Last weekend I had dinner with some friends (a family of four) whom I hadn’t seen in far too long.  I believe we last got together around New Year’s, just before I started this public journal and made myself accountable.

After setting down my purse, the words out of my friend’s mouth were, “Wow, Lisa, you look great!!”

Admittedly, this made me smile something huge and I quickly said, “Thank You!!”

(Yes, the dialogue was spoken with emphatic exclamation marks.)

We were interrupted and I needed to go get something.  Our conversation ended there.

Besides my own mother and my boyfriend, this friend was the first person to mention noticing any difference in my appearance.  [That is except for Jen who noticed a difference between when I first met her in April and during our cruise in June.]


Read this post in its entirety:

Turning Back the Clock: Weight Loss and Pride

P.S. I've lost: 34 pounds, 3.5 inches off my hips, 3 inches off my waist and chest both, 2.5 inches off each thigh, and 1.5 inches off my neck.  No wonder clothes aren't fitting.  I'll eventually have to go shopping.  ;-)

Sunday, July 25, 2010

Blue Ice and Still Waters

On the 5th day of our cruise, we traveled up the Tracy Arm Fjord to visit the Sawyer Glaciers. It was an early morning and actually the coldest on our trip.

Here is a view early in the morning near the entrance to the Fjord.  You can tell that no one had been through these waters yet that day. 


The Fjord is so narrow that only one cruise ship can travel it at one time. Wednesday was our day. Winding through the turns of the Fjord affording us many different views.

As we approached the glacier itself, most everyone on the ship was trying to get that picture-perfect view.

I was fascinated by the lines visible in the glacial ice. We were told that the lines were a sign that two glaciers were crunching into each other.  You can see here that even more than two glaciers are coming together.  It was truly beautiful.



Yes, the ice is that blue!


Harbor seals like to hang out on the icebergs. It took me awhile to figure out where people were seeing the seals. But once found, they became easy to spot.


Here's a seal swimming around an iceberg. Getting a bite to eat perhaps.


As we were leaving Tracy Arm Fjord and traveling toward open waters of the north Pacific Ocean, we passed a small vessel traveling up the fjord.  Yes, that smallish white blob in the middle of the photo is a boat.  I hope this helps to demonstrate the grandness of the landscape.

And still the waters are so very calm.  Later in the day and the following day, we were definitely NOT in calm waters.  The ocean created much turbulence, rocking, and swaying.  Several people did not handle it well, but thankfully Rob and I seemed to be just fine.  A little headachy but that's all.

One more day on the cruise in Victoria, British Columbia, before we return to Seattle.  In the meantime, enjoy this 6-minute video I took as we approached the Sawyer glaciers.

video


Related Posts:
The Rainbow Connection
Beginning of an Adventure
In Seattle for a Day, Kissing the Sidewalk
And They're Off!!
Whales, a Glacier, and Hottubs
On the Rails in Skagway
Blue Ice and Still Waters
Victory in Victoria, British Columbia
Who Knew Washington Could be HOT!!

Thursday, July 22, 2010

"to take the process one step at a time"

Being a caregiver or needing a caregiver is something which isn’t talked about nearly enough.  In fact, my friend Patrick, who is a long-time caregiver to his wife who has MS, shared an interesting comment with me:
    “One of the most frequent emails I get is from people wondering whether their spouse or significant other has what it takes to be a caregiver in the long run of MS or the other side of the coin from beginning caregivers wondering if they can make the long run. There is a lot of unspoken language out there.” - Patrick, Caregivingly Yours
Rob, in recent years, your mother has needed help at home and you have become her part-time caregiver.  She relies upon you.  Have you given thought to the possibility of becoming my caregiver someday?

I have and it is somewhat daunting to me.  However, I think my hiking trip experience serves a basis for a caregiving approach.  That is, to take the process one-step-at-a-time.  I think using this sort of graduated process would be the right sort of approach for handling whatever MS might require of us down the pike.

Read this post in its entirety:

The Face of MS: A Boyfriend's Perspective, Continued

Tuesday, July 20, 2010

Phlebitis after Intravenous Treatment

It's official.  I have phlebitis in both veins in which I received my Rituxan infusions at the end of May and early June.

Do you remember the 2nd infusion?  That horrible morning, it took 9 needle sticks and multiple nurses to get the IV line started.  I was not a happy camper.

Something which I think I did not mention was that when the IV nurse flushed my veins at the end of each infusion, IT HURT!!! 

My thought at the time was that she pushed too hard/fast with the saline and probably "blew" my vein in the process.  Apparently that's very likely what happened.

The vein which was used on the inside of my right wrist developed several hard lumps and was rigid.  I even complained about this on Twitter.  It was painful for a long time too.
The vein which goes over the back on my wrist on the left had also become inflammed.  It almost seemed like there was a kink in the vein which left an enlarged section ballooned out. 

I conducted research online to try to figure out what this might be.  Everything I found pointed to phlebitis caused by intravenous damage.  Chemotherapy patients sometimes experience phlebitis with the harsh medication they must use.

The answer to treatment seemed to be warm compresses and time.  I have been using warm compresses (actually a heating pad) sporadically since I read that.  It only barely softened the vein on my left wrist.

Pain was present and increasing a couple of weeks ago and I started complaining more.

My mom - "You should call your doctor."

I'll try the heat first and see if that helps.  Becoming concerned that maybe blood clots could be developing, I started taking a baby aspirin each day just in case.

Things did not improve and now it was 6+ and 8+ weeks since the infusions.  The condition of these veins was definitely NOT NORMAL.

My mom asked - "When you are going to call your doctor?"

So I finally called my rheumy's office yesterday and talked to my doctor's nurse.  She in turn talked to my rheumatologist who wanted me to see either her or my PCP soon.  Whoever could get me in the soonest.

Today, I saw my primary doctor and she was glad that I came in.  I was correct to believe that these veins were definitely not in good condition.

Since one vein was still very large and swishy in spots, while being rigid in others, she prescribed an antibiotic.  I'll be taking Cephlex for a week.

I asked if any other patients had reported their experiences with the IV nurses at this particular hospital center.  None had, but she asked me what my concern was.

I told her the story and she took notes.  She confirmed that most likely the nurse did blow my veins at the end of each infusion.  Something which really should not have happened and has caused inflammation, scarring, and possible infection.

Besides the antibiotics, my instructions are to continue the warm compresses.....and....to NOT ALLOW anybody to come ANYWHERE NEAR those two veins for six months.  No blood draws and definitely no IVs.  Nothing.

At least now I know that I was right to finally call the doctor.

I know, I know.  I should have called sooner. 

Monday, July 19, 2010

Sexual Freedom When You Have RA

New Positions
Arthritis in the hip, knee, leg, or arm can cause considerable pain during sexual activity.  Experiment with different coital positions which put less strain on painful joints, and let your partner do most of the work if movement causes you pain. Consider what you do to be most comfortable lying in bed and start from there to find a position which could be adapted for greater comfort and mutual pleasure.

Adapted from an Arthritis Foundation brochure, the following descriptions may give you new ideas or starting points from which to find new positions to enjoy.  Be sure to work together to find something comfortable and satisfying for both partners.  Caution: If you have problems in your neck, Dr. Mark Borigini warns that you should not place a pillow under your head during sex.


Read this post in its entirety:

RA and Sexual Independence, Part Two

Sunday, July 18, 2010

On the Rails in Skagway

It's about time, I pick up the story of our Alaskan cruise.  The day after Juneau, we disembarked in Skagway, Alaska.  This was to be a very early morning since Rob had to get off the ship before 7 AM for a hiking excursion.

I tried to sleep a little longer, but was rather unsuccessful.  So what's a girl to do?  Go shopping!!

With plenty of time in the morning, I ate a leisurely breakfast (which was very smart because I didn't get to eat lunch until dinner time).  Then it was time to go into town which wasn't very far at all.  With our great luck, the day was gorgeous and beautiful.  Maybe a tad bit hot.
Next: The White Pass and Yukon Route Railroad.
"Built in 1898 during the Klondike Gold Rush, this narrow gauge railroad is an International Historic Civil Engineering Landmark, a designation shared with the Panama Canal, the Eiffel Tower and the Statue of Liberty.

The WP&YR railway was considered an impossible task but it was literally blasted through coastal mountains in only 26 months.



The $10 million project was the product of British financing, American engineering and Canadian contracting. Tens of thousands of men and 450 tons of explosives overcame harsh and challenging climate and geography to create "the railway built of gold."

The WP&YR climbs almost 3000 feet in just 20 miles and features steep grades of up to 3.9%, cliff-hanging turns of 16 degrees, two tunnels and numerous bridges and trestles. The steel cantilever bridge was the tallest of its kind in the world when it was constructed in 1901. 
The 110 mile WP&YR Railroad was completed with the driving of the golden spike on July 29, 1900 in Carcross Yukon connecting the deep water port of Skagway Alaska to Whitehorse Yukon and beyond to northwest Canada and interior Alaska."
The scenery truly was breathtaking as we climbed higher and higher into the mountains.
More train pictures with the Sawtooth Mountains on the right.



 

After a long train ride which took us to the border of British Columbia and back, what's some hungry goldminers to do?

Attempt to avoid spending too much money in the shops and head over to the Skagway Brewery to pick up a free hat.  The only catch with getting the hat (besides having a coupon) was the you had to got to partake in their beer samples.

I particularly enjoyed the seasonal Spruce Tip Ale which is said to be chocked full of vitamin C.  It was yummy! 
Sunset as we left Skagway.



Related Posts:
The Rainbow Connection
Beginning of an Adventure
In Seattle for a Day, Kissing the Sidewalk
And They're Off!!
Whales, a Glacier, and Hottubs
On the Rails in Skagway
Blue Ice and Still Waters
Victory in Victoria, British Columbia
Who Knew Washington Could be HOT!!

Thursday, July 15, 2010

Carnival of MS Bloggers #67

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Professionals, Patients, and the Lottery

by Judy of Peace Be With You


all over the world
committed professionals
looking for a cure

in a leap of faith,
though unsure of benefits,
patients take their shots

uncharted pathways
we explore together
hoping for the best


by Dr. Rob at Musings of a Distractible Mind

Dear Patients:

You have it very hard, much harder than most people understand.  Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like.  How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like?  How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue?  How do you decide when to believe them or when to trust your own body?  How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know.  I do have information that you can’t really understand because of your unique perspective, your battered world.  There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you.  It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past.  It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death.  I am not talking about doctors being afraid of the limits of their knowledge.  I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain -  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have.  You see why you scare doctors?  It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them.  I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand.  You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors.  There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:
  1. Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.
  2. Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.
  3. Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.
  4. Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.
  5. Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.
  6. Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.
  7. Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living.  I hope this helps, and I really hope you get the help you need.  It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,
Dr. Rob

[Although not an MS blogger, I thought that Dr. Rob's post was extremely important and applicable for many of us in the MS community.  If you haven't discovered Dr. Rob's blog, I highly recommend it.]


by Judy of Peace Be With You


Let us be honest.
None of us would have chosen
to contract MS.

To be practical,
what is the point in asking
why this thing happened?

The pressing question,
how to deal with what we have
in the here and now.


by The Wheelchair Kamikaze
Questions
Image by Oberazzi via Flickr

Though I've never seen any research studies proving this, I'd wager that one of the most commonly asked questions by those struck with chronic illness is "Why me?" They may not express it very often verbally, but using myself as a guide, I'd say this little two word query crosses the mind of most patients several times a day. I find that it often leaps to the forefront of my consciousness as I watch the evening news, with its daily parade of murderers, child molesters, and assorted miserable scoundrels, all sauntering along under their own power without need of a wheelchair, cane, or brace. Certainly, the universe must be upside down. Granted, I'm no angel, but the fact that Charles Manson can do jumping jacks to his heart's content, and I'm stuck relying on a set of wheels sprouting from my backside to simply get across the living room is just plain wrong. Is there no justice?

Well, the short answer is, no, there is no justice. Justice is a human construct, an invention we use to placate the need we have to see perceived bad punished, and good rewarded. The question of whether or not we live in an ordered universe has been a subject of puzzlement for mankind since we developed the mental capacity for self-awareness. My Zen leanings have me wanting to believe that somewhere a universal accounting is taking place, but there's a considerable part of me that can't shake the notion that this is all just one big jumbled game of pickup sticks, a tangle of randomness and happenstance in which we are caught up like the silver ball in a pinball machine, being buffeted from bumper to bumper. Still, shoving all rationality out of the way, the mind screams insistently for an answer, why me!

I get my hair cut by a delightfully wacky Thai woman who practices a strange sort of evangelical Buddhism. I've always had a knack for attracting the eccentric, most of whom I develop some real affection for, this lady no exception. She told me that her meditations have revealed to her that I suffer from Multiple Sclerosis in this life because in my past life I was an alcoholic who was cruel to animals. She also told me that my wife Karen is stuck as my caregiver this time around because we were together in my previous inebriated incarnation, and Karen was the dastardly miscreant who kept me swimming in booze. Due to these previous shared misdeeds, we're both paying the piper in our present manifestations. Her advice: stay away from the firewater, and carry around breadcrumbs to feed any birds I encounter on my wheelchair excursions, committing some random acts of kindness to make up for whatever heinous violations I visited on our furry and feathered friends in my previous life. I'm not quite sure I buy this story, but my mind shrieks for an answer to "why me?", and, lo and behold, the universe has provided me with one, along with a pretty decent haircut. So there.

A funny thing I've noticed about human nature (at least, this human’s nature) is that when awful things befall us, we're quick to ask "why me?" but when fortune smiles upon us, we don't question our deservedness, or the astounding wisdom of the universe. Back in June, 1994, I won $14,000 in the Florida lottery. The night before, I'd gone shopping in the supermarket on my way home from work, and then realized I'd forgotten to buy some butter. I stopped at a grimy little convenience store near where I lived to rectify the situation, and while waiting on line to pay for my item, I got stuck behind a guy buying what seemed like hundreds of dollars worth of lottery tickets. Figuring what the hell, when I finally made it to the cashier, I spent a buck on a Fantasy Five ticket, letting the lottery machine pick my numbers for me. The numbers on the ticket read 10, 15, 20, 24, and 25. I made mental note of the relative symmetry of the randomly generated numbers, and put the ticket in my wallet.

The next day, I started feeling sick at work (the result of the convenience store butter?), and went home soon after lunch. Once home, I started to climb into bed, newspaper in hand, when glancing at the front page I noticed that the Fantasy Five winning numbers included 10, 15, 20, and 25. Relatively sure that those numbers matched the digits on my ticket, I reached for my wallet to see just how close I'd come to winning the jackpot. I quickly confirmed that four of the numbers on the ticket matched those listed in the newspaper, and saw that the fifth number was 24. Checking the newspaper, I was shocked to see the number 24 nestled between the 20 and the 25. I had won the big one, all five numbers on my ticket miraculously matching the winning numbers listed in the newspaper. A quick call to the phone number listed on the back of my lottery ticket confirmed that I was indeed a winner, and I was told that if I made it to the local lottery office before 3 PM, I could have a check that day. My illness mysteriously lifted, I was soon on my way to pick up a nice big juicy check for over $10,000, the amount of my winnings minus the mandatory sacrifice to the tax man.

I'd imagined winning the lottery millions of times in the past, just as I had imagined being told I had some dread illness innumerable times (I was a very accomplished hypochondriac). My reactions when both situations passed from fantasy to reality bore little resemblance to the scenes that had played out in my mind. Upon winning the lottery, I wasn't shimmying around my apartment, caught up in ecstatic convulsions as I had pictured. I had a good laugh, called a friend to tell them of the news, and then got in my car and picked up my money. When told I had Multiple Sclerosis, I didn't collapse sobbing to the floor or sink into a sudden and permanent state of catatonia, as I had so many times in my mind, but experienced a stab of dismay, a sudden recalibration of my life's priorities, and a resolve to fight this freaking thing with everything I had. Perhaps because of my hypochondria, my diagnosis felt almost like a confirmation of something I'd known my whole life, that I was indeed sick. In retrospect, maybe I wasn't a hypochondriac after all, maybe I innately sensed that something just wasn't right.

Theoretical physicists, starting with Dr. Einstein, have known for quite some time that we live in a universe whose ultimate secrets lie far beyond our powers of comprehension. We can seek to tease apart the intricacies of the universe, but on a very basic level, though we may someday be able to describe them, we will never truly be able to experience them. The most current hypothesis, which draws closer to being proven with each new collision of speeding electrons in a particle accelerator, is that we live not in a universe but in a multiverse, the possibility of infinite parallel universes existing alongside our own appearing ever increasingly to be reality. We very likely exist within a framework of 11 dimensions, of which our puny little minds can only perceive three. There is much that is unseen, but very near.

Perhaps then there are answers to "why me?" somewhere amidst the vast incomprehensible, but they will forever be beyond the powers of our minds to grasp. As my diagnosis with MS and my winning the lottery illustrate, extremely unlikely events happen to each and every one of us, and our efforts to discern some deeper meaning or some recognizable pattern from that which befalls us have about as much chance at success as a beagle has at mastering calculus. Ultimately, the answer to "why me?" is probably best answered by its corollary, “why not me?” Good and bad are meted out to the deserving and undeserving both. Rather than struggle to understand, we must accept, and in that acceptance find the inner strength that is the fuel for the hope that drives the will to fight for that which MS has taken from us, and triumph, if not in body, than in spirit (but hopefully in body).

Be strong, my friends. The answers lie within.



This concludes the 67th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 29, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, July 27, 2010.

Thank you.

Comments for this post.

Wednesday, July 14, 2010

Busy

It has gotten busy around here.  Several days have gone by where I did not have nothing to do.  (got that?)  So much to take care of and I really want to write a nice pretty blog, maybe with some clever words or a nice story.  But alas, it will have to wait.

Btw, thanks Anne, for introducing me to Pyramid Solitaire on FB.  It is fun, but much too much of a time suck.  LOL.  I do enjoy it though.  I gotta turn off the games and get back to business.  I am a blogger, ya know.

Tuesday, July 13, 2010

An Interview with my Boyfriend

There are many faces of MS.  Not just the persons who are diagnosed with multiple sclerosis, but those around us who share in this experience.  Last week I interviewed my mother to get her perspective on this disease.

Another important Face of MS to recognize is the one seen in the eyes of those you have the closest relationship with: your spouse or committed companion.

Dating when you have MS can present special challenges.

In 2005, I was actively dating and met a man on a blind date just one week before I mentioned tingling/numbness in my left hand/arm to my doctor.  On the date we were both shy but had a great time talking about many things, including our love of music.

Hey, he was actually going to a symphony concert that evening with friends.  This guy had potential.  ;-)

Read this post in its entirety:

The Face of MS: A Boyfriend's Perspective

Sunday, July 11, 2010

Whales, a Glacier, and Hottubs

The first stop on the cruise was in Juneau, Alaska.  I was really looking forward to this day as we had planned on enjoying the all-day excursion.  Whale-watching in Auke Bay, salmon bake, Mendenhall Glacier.  Rob got up early and I joined him as we watched the scenery coming into port.

video


Our whale-watching excursion began with a bit of excitement when we spotted three Orca "killer" whales on the way to the salmon bake.  We were told that while humpback whale spottings are highly expected, only about 10% of these catamaran tours saw killer whales.  We were extremely lucky and the crew showed genuine excitement.


Lunch was served at the Orca Point Lodge located on Colt Island.  Across the way we could see Admiralty Island which is said to have the highest number of brown bears per square mile than any other place in the country.

After lunch, we saw several Bald Eagles simply hanging out in the trees or on the rocks.  Can you see the eagle in the photo to the left?

There was so much great stuff to see on this trip.  I enjoyed watching the Stellar sea lions play for a little while.

I think it was around this time that the memory card filled up on my camera.  Thankfully my friend Jean had recommended that I get a spare battery for my camera.  While I was at it, I purchased several extra memory cards.  I was able to switch it out quickly.

Good thing because it wasn't too long until we found a group of about seven Humpback Whales who were bubble feeding.  Rob got some great photos while I try to get as much as I could on video.  I haven't editing any of the video footage yet, but here are a couple of very nice pictures.

Next stop on our excursion was to the Mendenhall Glacier.  Rob and I were completely impressed with the beauty of the area.  We took a walk to Nugget Falls which was enormous, but dwarfed by the glacier itself.
 


It took me about 30 minutes to walk to Nugget Falls where you could feel the mist even from a distance.  It was really unbelievable how we lucked out on such glorious weather.

Rob and I took several photos.  As we began to walk back to bus, we realized that we were going to be cutting it close.  The bus driver had given us one hour to spend at the glacier.


Well, we missed the bus.  Fortunately, a bus driver from the same line who was there with a different group picked us up as "strays" and took us back to the ship.

It was so warm that Rob and I had left our fleeces on the original bus.  We figured that we may have just lost them permanently.  However, we even got those back after waiting at the dock for a little while.  After all these delays, we were over an hour late for dinner but our waiter served us anyways.

It really was an exciting day!!

I was exhausted and becoming very stiff from all of the walking during the afternoon.  In an attempt to counterbalance the spasticity which was attacking, I made use of the hottub onboard the ship.  I soaked those muscles into submission and went straight to bed as we would be in Skagway the next day.

Friday, July 9, 2010

And They're Off!!

Hard to believe, but it's been three weeks since we embarked upon the cruise to Alaska.  Our time in Seattle was eventful but the cruise was to be the main attraction on this journey.

We met such wonderful people already, how could this trip get any better?


After settling into our cabin on the ship, Rob and I ventured up top to watch the scenery as we voyaged into the waters of the Pacific Ocean.  There were the Olympic Mountains on the left and the line of cruise ships behind.  I found this image to be humorous (and the inspiration for this post's title).

That first evening on the ship was relatively calm.  We went to dinner and discovered that, although I had called the travel agent and specifically requested that our party of two be seated at the same dinner table as Jen's part of four, we were seated with strangers.  Ironically, some of the folks at our table were also supposed to be sitting with friends who had been misplaced.  Oops.  Fortunately, everything got rearranged so that Rob and I could be entertained at Jen's table by some truly great individuals.

What a good-looking motley crew we make.  The photo above was taken during our first "formal" evening onboard the ship.  Pictured from left to right:
  • Top row - Mary (Jen's mom), Norene (Jen's friend), Jen, Lisa, Rob (Lisa's boyfriend)
  • Bottom row - Nancy (Jen's aunt, who reminds me very much of my own aunt Nancy) and Elaine (a wonderful MSer who was a great of fun and who playfully encouraged Rob to get moving in a direction which has been discussed.....and discussed.....and.....)
I thought that we looked pretty spiffy that evening.  What do you think?

It was about 8PM when this photo was taken.  Notice how the sun isn't even thinking about going down yet.  I loved it!

One person I was very happy to meet in person is Cathy of Navigating the Journey of MS.  We ran into each other several times on the ship and finally sat down for a photo.  Here's a moment where Cathy and her husband caught me shortly after I was in the shower.  Notice the wet hair.

Coincidentally I was also wearing one of Cathy's t-shirts.  "I do shots!"  I like it, even if I don't do shots any longer.  Although I did do an alcohol "shooter" later in the cruise.  However I didn't really feel any alcoholic effects from that drink.  Interesting.


Right before the cruise, Cathy held a contest on FB for the first person who could identify one of the new bears she carries on her website The MS Shoppe.   I won!!  As the prize, I received one of the bears which she delivered to me in person on the cruise.  It's a nice reminder of the trip and of meeting Cathy.

Now finally, we had lunch with all three MS bloggers. 

There are still many more stories to tell, but here's one which still makes me smile.

One evening while sitting at the dinner table, I notice a woman smiling at me.  Reflexively, I smile back.  Then I looked away so as not to appear staring.  She came around the table and asked, "Are you Lisa?"  Yes, I am.  "Lisa from Brass and Ivory?"  Yes (I blush).

Susan J. from northern California was the only person on the cruise who recognized me from my blog (other than Cathy and Jen of course).  My waiter interrupted our brief conversation while taking my order.  But we quickly got back to introductions before Susan sat at her table and I heard her explaining who I was.  :-)

What a special thrill!!  Being recognized from a little blog such as this one.  It really made my day, my week...well, heck, I'm still smiling about it.  Thanks Susan, it was wonderful to meet you too!  Too bad I didn't think to get your picture.  Sorry.


Next time, I'll share a few photos from glorious Alaska and tell some tales of Juneau and Skagway.  This was truly a scenic trip indeed.

Wednesday, July 7, 2010

An Interview with my Mom

If you spend just a moment thinking about it, there are many differences faces of MS.  Those persons who are diagnosed with multiple sclerosis are not the only ones who feel the disease, as those around us who share in this experience.  Many different faces representing the MS community at large.

It’s easy to look at our MS diagnosis through our own patient’s eye.  Face it, the vast majority of our community is made of up people who have been diagnosed with MS or are in the process of getting diagnosed with MS or some other neurological disease.  We share many of the frustrations of living with disease and the successes we have along the way.  Sharing is rather therapeutic, I’d say.

But how do our loved ones - parents, siblings, boyfriends, friends, or caregivers - view MS in our relationships?  Exploring these often forgotten Faces of MS, I will be interviewing people around me.  Asking the questions which I may not know the answers to, I expect to learn something about them, the disease, and about myself in the process.


Read this post in its entirety:

The Face of MS: A Mother's Perspective

Tuesday, July 6, 2010

RA and Sex: Independence, Part One

Pain, fatigue, the disease itself, medication side-effects, loss of desire, sexual dysfunction, and changes in relationships affect our sexual health.  Humans are created as sexual beings and sometimes illness and disease get in the way from enjoying this aspect of our lives.

So what can we do about it? 
In every healthy marriage and relationship, intimacy plays an important role. For those living with disease which causes disability, such as rheumatoid arthritis), maintaining a satisfying sex life can be an arduous task. But don’t give up, there are ways to be intimate and adapt to changing needs.

Be open and honest with your doctor. Discuss the physical problems and symptoms you are experiencing and any medications you are taking. If you are not comfortable talking to your current physician about these topics, you may want to find one you feel more at ease with or who specializes in sexual or intimacy-related issues.


Read this post in its entirety:

RA and Sexual Independence, Part One

Monday, July 5, 2010

A Sense of Independence and Freedom

Having just returned from a cruise which hosted over 300 people traveling with the Multiple Sclerosis Foundation, I have been thinking about all the individuals I met, observed, or got to know personally.  One of these individuals was seated at the same dinner table as I.  Let’s call her “Kay.”

The night before our visit in Victoria, British Columbia, Kay mentioned that she would try out the scooter [she had rented] so that she could venture around the famed Butchart Gardens.  I also went to the gardens but never did run into Kay.  Butchart Gardens is big and has “fifty-five acres of stunning floral show gardens.”

Fifty-five acres full of paved winding trails is a lot of ground to cover.  The next day, I asked Kay how her trip to the gardens had been.  Her face lit up and she expressed that she loved it!!

I asked how the scooter worked out.  She smiled and said that it was great, it was fine, wonderful.  She had been afraid to use the scooter all week long, worried of how it would feel to her (inside) to do so.  But she learned that she had absolutely nothing to be afraid of.

Freedom and Independence are what I’m thinking about today.

Read this post in its entirety and answer the questions posed:

MS Central Question of the Week: Independence and Freedom

Sunday, July 4, 2010

In Seattle for a Day, Kissing the Sidewalk

After spending a day traveling across the country and visiting Mt. Rainier, it was slow getting up the next morning.  But it was very important that we get up at a decent time because there were people to meet and things to do.

Rob and I were staying with an old roommate of his from college.  As a special treat, this friend Ray made breakfast for us.  Awesome french toast made with hearty bread and fried egg on the outside.  Yum.

After a leisurely breakfast, Ray took us to the car rental place and I picked up our car for the day.  Then it was time to go retrieve Jen (of MS Strength and HowIFightMS) and her mother who were also going to meet Diane, Webster, and Gretchen (MS friends and bloggers).   We made it to Diane's place much more quickly than I anticipated.

Although I already wrote a little bit about our meeting at Diane's, I'd like to add that it was a big step for many of us in bringing our online world to our 'in real life' world.  I suspect that there will be more opportunities to do similar meetings from time to time.  Pictured above (left to right) are Diane, Webster, Rob (my boyfriend), myself, Jen, Gretchen, and Mary (Jen's mom, who we all wish to take home with us).

After leaving Diane's place, four of us went back downtown to Jen's hotel where we met up with the elusive Braincheese.  Since nobody has seen Linda before, she presented herself as one of her cat profile photos.   From there we headed to Pike Place Market, a famous spot in Seattle for eating and shopping.

The walk was only 7 blocks or so but Rob and I took the rental car to park closer.  FINALLY, we found a garage which was somewhat affordable.  The walk was only 2 blocks before we arrived in front of Pike Place Market.  After trying to listen to a phone message (impossible with the sound of street performers and whatnot), Linda spotted us and we joined up once more.

Wouldn't you know it, but as we approached the market, in front of this Corner Market, I did a faceplant right there on the sidewalk.  Splat!!  This was one where I didn't even know I was falling until the pavement was much closer than it should have been.

I think my toe got caught on a small crack in the sidewalk.  We can't really blame MS on this one except that maybe my impaired peripheral vision contributed to the accident.  (I hate having to watch my feet while I walk!)

So splat.  Dang it.  Ouch.  I rolled over.

Somebody above my head was asking if I was ok (not sure who that was).  A vendor asked if he should call 911.  No.  I said, "I think I'm fine, give me a minute."  Linda, the nurse, was a calming presence keeping folks from hovering.

Although laying on a sidewalk is not a typical thing to do, it seemed like a good idea at the time.  Then I sat up.  My feet and legs seemed to be intact, rotated my ankles around.  Good.  Then the spasm in my left calf attacked.  Ouch!!

I gave it a good minute or two, stretching and rubbing, before standing up.  So far so good.  Knees seemed fine, then I looked down at the hands.  Yikes!!  Two veins on my right wrist were popping out, swelling had already started.  "I think I'd better get some ice on that."

Quick thinking Linda got some ice from the fish vendor and a plastic bag from a fruit vendor.  I had a pretty good icepack which I kept on as long as the ice remained.  It made a huge difference and we went on with our afternoon.  We ate lunch at the Athenian restaurant, the oldest restaurant in the area.  The view was nice and we had a good time.  (I downed some extra baclofen and tylenol.)

After lunch Jen and her friend Norene really wanted to go up in the Space Needle.  Off to the monorail we go.  It was a good 4-5 block walk.  When we arrived Rob asked me, "how are you doing?"  My reply, "I think a seat would be a really good idea about right now."  We used the elevator and thankfully didn't have to wait too long for the monorail to arrive.

The views from up top the Space Needle were very nice.  Although the skies weren't quite clear enough for it, I tried really hard to see Mt. Rainier.  Just not possible, so I had to simply imagine it.  Maybe next time...and I do have a feeling that there will be a next time in the future.

After riding the monorail back to the downtown area, we started walking towards the hotel.  Rob asked how I was doing and I simply gave him my hand.  That's now become the subtle signal that I need a little help and he becomes my "cane" (the fold-up one I had left in my suitcase at Ray's house).  I'm not sure if I made it even 3 blocks before someone else asked how I was doing.  Then Jen said, "I don't know about you." 

So I gave in (or rather made a smart decision).  Rob and I sat on a short brick wall while the group continued on to the hotel and Linda got her car.  She circled around to pick us up and take us to the garage where our car was parked. 

Although each step had become very difficult, my will and pride wanted to keep going.  My inner being didn't want to surrender to weakness.  Arrgh.  Thankfully, I was surrounded by people who understand and who were watching out for me.  I am blessed that way much of the time.

When we got back to Ray's house, I was so very sore and tired.  My legs hurt.  My hands hurt.  My shoulders hurt from the impact and so did my left knee.  My muscles felt like rocks.  But still it was worth it.

I drugged up before going to bed (baclofen, gabapentin, tylenol, even some xanax) in a similar way to the way I had in Switzerland.  The pain still woke me up though several times during the night.

It was interesting the next day to see how I could (or couldn't easily) walk down the stairs.  Overall it took about two days before things straightened out, which was a good thing because we had stuff planned during the cruise.  Come on legs, get with the program.

I'll pick up the story with the cruise itself.  Until next time......