Beginning of an Adventure

As you may have gathered, I was traveling recently. In fact, I was away from home for 10 days to go on the "Cruise for a Cause" sponsored by the Multiple Sclerosis Foundation. It was an Alaskan cruise which departed from Seattle and visited Juneau, Skagway, Tracy Arm Fjord, and Victoria, British Columbia.

So many firsts were experienced on this adventure. I had never been to Seattle (or Washington State), never on a cruise, and never to Alaska. I had been to Canada previously but not on the West Coast. I have been to Los Angeles, San Francisco, and Portland however, so it wasn't the first time to the West Coast.

Other than my recent trip to Switzerland, it has been a long time since I've been on such an adventure. The personal success of both these trips has given me a renewed confidence in my abilities to adapt to challenging situations.

The first day of the trip was an adventure itself. Since we waited a little too long to decide to go on this cruise, I tried to find the cheapest airfare for Rob and myself. To do this, we opted to fly out of Baltimore instead of Northern Virginia. We're both now thinking that it's worth an extra $100 to fly out of Reagan National or Dulles. To make our 7 AM flight leaving Baltimore, we had to wake up at 3:30 AM. Geez, that is way too early!!

Arriving in Seattle, Rob's friends picked us up at the airport. Hoping that the weather would clear (as it had the day before), we headed to Mt. Rainier National Park. I've never been (obviously) and folks wanted to share the experience with me.

At one of the stops within the park, we started to take a trail below Narada Falls. Not too far into the walk we encountered snow on the path. Knowing that my tennis shoes are horrid on snow, I opted to stay behind. Also, the climb down and back looked to be rather strenuous and I was wary of that anyways. It was cold so I was given keys to the car.

Wonderful thing. It was not a big deal AT ALL that I stayed back. Nobody felt bad and certainly nobody tried to make me feel bad. The other three in our group are real hikers so it makes sense that I wouldn't keep up with them anyways.

The next stop was at the nature center and Paradise Inn for lunch. But we missed lunch time, ate snacks and traveled further into the park. Our host thought of a trail which was not too difficult at all. I decided to try this one myself, for which I'm really glad I did. I had to stop several times to give my legs a chance to catch-up, but seeing the nature and being part of the group was wonderful.


We walked to the Grove of the Patriarchs where 1000 year old trees reside.  Very majestic and beautiful.

Grove of the Patriarchs

Walking into the the Grove of the Patriarchs near the Ohanapecosh section of Mt. Rainier National Park feels like a cathedral. Groves of ancient Douglas-fir, hemlock and Western red cedar trees leave the air musty-sweet and clean, and visitors realize the insignificance of their own size.

To put it in perspective, when Columbus landed in the New World, some of these trees were already 500 years old. Clustered on a small island in the Ohanapecosh River, some of the oldest trees are more than 30 feet in circumference and have survived fires and floods for a thousand years.

A bridge over the river leads to a one mile boardwalk and interpretive trail where you can revere the eminence of this natural place. The trail takes about an hour to complete and the best hiking season is June through October. The trail is kid friendly and stroller accessible.

Wow!! I had no idea that the boardwalk area alone was a mile long!! No wonder it felt longer than one mile total which was one persons' estimate. Whoa, go me!!

After the hike, we went back to eat dinner. Coming out of the park, we saw lots of wildlife which was a great way to start our vacation.  On the drive past Seattle to our destination near Sammamish Lake, I slept like a log.  It had been a really LONG day, but very fun indeed.

We definitely needed to get some sleep that night because we would be getting up in the morning to travel into Seattle to meet some MS bloggers and friends.

Read more on the day in Seattle.

Carnival of MS Bloggers #66

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

Motivation, Exercise, and Advocacy

Maybe it's Just One of Those Days
by Webster

I am feeling rather depressed today. My PT, Shannon, pointed out some truths to me about my "lack of compliance" with my exercise routine. She sees right through me. She's good. And she isn't even a specialist with MS! Still, she certainly hit on my buttons, in a very kindly way, as we discussed the ebbs and flows that is MS.

Why am I not doing my home exercises? I don't know. Because I don't believe that they will keep me from getting worse, I guess. In my heart of hearts I feel it is inevitable - getting worse. I have seen it - too much of it - it will happen to me, too. And I guess I feel that there's not anything I can do that will change that. So, I don't bother. I started out with high hopes, and I was getting stronger. . . THEN, I got that damned sinus infection which pretty much put me back where I was. I guess I'm feeling, "What's the point?"

Of course, I know that  if I continue the way I have been - not doing much of anything - I WILL get worse. So then, if I do the work, and don't get better, perhaps I'll just stay the same. Like treading water: sometimes it takes a lot of effort just to stay afloat.

So, I've been feeling a little blue today, just shy of crying. Thinking about what I have to do to change my thinking. Oh- and I have been taking Ampyra for five days now, and have not noticed a difference. There's that, too.

And then I read this, which leads to thoughts of the BP oil washing up on the once pristine beaches of Florida, and Louisiana, and these thoughts do nothing to make me feel better about my situation, at all, but just seems to be a swirl of negativity circling the drain.

I didn't get enough sleep last night; I woke up  feeling like crap. But I went to PT and I walked in water for 25 minutes, and the treadmill somehow pushed the speed up a notch to a six, when Shannon set it at a five, so it was no wonder I was feeling the difference.

Anyway, we made a plan. Do one thing: the Roll for Control. Every day. It takes, what?, five minutes? Then throughout the day do little things like standing balance exercises, or pulls with the TheraBand, or seated marching during commercials. But those things are all extra. The Roll for Control is what I must do  every day, without fail.

I'm going to go to bed. Tomorrow has to be a better day.

Good Night, TTYL, and Be Well,
Webster

New MS Device to Rehab My Swollen Feet
by Diane Standiford

Always trying something new---this cheap, plastic device (that probably made someone millions) lets your feet simulate walking, while you are seated. It will keep the blood circulating, lightweight, sounds super! I don't have the foot strength or calf strength to move the left one. I had hoped it would have a teeter-totter effect...but, no.

And off I head in search of the next affordable device to help my MS.

Awesome advocacy experiences
by Dan Digmann

Jennifer and I, along with her care coordinator Rochel Genge, R.N. and others from Region VII Area Agency on Aging, interacted with many elected state officials at the third annual Older Michiganians Day in Lansing on June 10.

Self portrait of Jennifer & me getting political at the Capitol

Jennifer & Rochel after our chance meeting with Rep. Caul

We even have photographic proof that we advocated for the MI Choice Medicaid Waiver Program through impromptu conversations with influential legislators Sen. John Gleason, Sen. Deb Cherry and Sen. Roger Kahn on the lawn in front of Michigan’s State Capitol Building. While we have met Sen. Cherry and Sen. Kahn before (see related post here), this was the first time we met Sen. Gleason.

Jennifer followed up with Sen. Gleason after he spoke to the more than 600 OMD participants to thank him for supporting the Waiver program.

But we forever will get giddy when we think and talk about our chance meeting for which we have no picture. No picture because we never expected to run into our State Rep. Bill Caul in the House Office Building hallway as he was rushing to get to a meeting in the Capitol Building across the street .

Sure, we were on our way up to his office to remind him of MI Choice Waiver Program and how it saves the state millions of dollars and how it is making it possible for Jennifer—one of his constituents—to continue living in her own home and positively contributing to her community. But as we made our way to get in line for the elevator, Rep. Caul made his way around the hallway corner and I whispered to Jennifer, “That’s Bill Caul right there!”

Jennifer made a split-second pause to increase the speed of her power wheelchair and, without saying a word to me, sternly rolled forward and called out, “Excuse me, Representative Caul?”

The noticeably tall representative who has served our district since 2004 stopped, looked down at Jennifer and smiled. “I don’t know if you remember me, but we’ve been down here before to advocate for the MI Choice Waiver Program that provides the services for me to continue living in my own home …” Rep. Caul was shaking his head and kindly cut Jennifer off.

“Of course I remember you,” he said with a smile.

Perhaps he says this to all his constituents but we’ve never felt someone, especially a politician, offer such a genuine confirmation that he knew who we were. They say pictures are worth a thousand words, and I’m wondering if the reason we have no picture of our meeting with Rep. Caul is because a thousand words wouldn’t be enough to describe this moment.

Knowing he had to get going, Jennifer told him we would leave some MI Choice information in his office. While he needed to get going, Rep. Caul stood there for a few more seconds to thank us for coming and for what we do to advocate for the needs of Michigan’s elderly and disabled citizens.

He shook our hands and then made it to his session a few minutes late, all because he took the time to listen to what we had to say.

We came home feeling so empowered and excited about the work we had done that day.

A powerful meeting: Jennifer with Sen. Cherry, who spoke about the power of advocacy

But it not only was for the work we had done to help ourselves, it was knowing our efforts also helped the people who weren’t able to be there to speak for themselves.

We always tell members of our MS self-help group they should be their own best advocates, and we encourage you to do the same.

Our fifth time we've met with Sen. Kahn to talk about the MI Choice Waiver Program

Find your passion and be a voice to make things better for yourself and for others like you. For example, if advocating for the needs of people living with M.S. is your passion, a great place to start is registering for the National MS Society’s Action Alert to receive news and information about M.S. advocacy news and legislative issues.

To borrow the line our respected fellow blogger Michael Gerber uses to conclude each of his posts at Perspective is Everything: “Participate. Make a difference. Live a life that matters.”

This concludes the 66th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 15, 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 13, 2010.

Thank you.

Comments for this post.

Gaining Water Weight While Traveling the Waters of Alaska

When leaving for vacation on this Alaskan cruise, I was concerned about gaining some of the weight back which I have worked hard to lose in the past six months.  While on the cruise, I was pleased to see so many wonderful food choices.  However, I did seem to be thirsty much of the time.

The result of mild dehydration was water retention and I did weigh-in at 11 pounds higher than when I left after the 10-day vacation.  In the post linked below, I share that the morning after I returned already some of that weight was 'lost.'  On Monday, more dropped.  The scale continued to go down on Tuesday and even today.

So far I am back to 242.9 lbs which is only 1.7 lbs heavier than my lowest weight in the past month (or several years for that matter).  I'll take it.  If the most I gained after eating well (yes, I did enjoy cheesecake and plenty of tasty goodies) was 2 pounds, then I'd call this a success!!

Water weight is interesting.  It can come on quickly, but it also goes away quickly.  Folks who are watching their weight might get frustrated with the up-and-down, but this is one reason why you really should only weigh once a week under the same circumstances. 


Read this post in its entirety:

Cruising and Dieting: Is it possible to do both at the same time?

Disease Management and Gender in MS

Today we will discuss possible differences men and women may have in health-related quality of life, symptom management, treatment management, and even personality.

Compliance and Disease Management
A recent study published in the Journal of Managed Care Pharmacy (JMCP) sought to evaluate gender differences in self-reported clinical characteristics, symptom awareness, and perceived ability to manage therapy among MS patients taking a disease-modifying drug.  How do we respond differently to our MS?

Of 4700 patients surveyed, only 44.1% responded.  Of those 2022 patients, 80.6% were female, 82.3% were relapsing-remitting, and 83.1% were taking Avonex (33.4%), Rebif (15.9%), or Copaxone (33.8%).  Curious that Betaseron, Tysabri, or Novantrone were not called out as well, only referred to as the 16.9% who were not using one of the drugs mentioned above. 

The flip side of the 2022 patients who responded is that 19.4% were male (4:1 ratio, women to men) and 17.7% were progressive.  Comparatively, the men were typically older and a great proportion of them had more progressive MS.  This reinforces what we discussed in MS in Men vs. Women: Does Gender Matter?


Read this post in its entirety:

MS in Men and Women: Disability, Compliance, Personality, and Mental Health

The Rainbow Connection

When planning to stop in Seattle before the cruise to Alaska, there were several things which I really wanted to do.  One of those was to meet with MS bloggers who live in the area.

Diane of A Stellarlife has already detailed the day we had, laughing, giggling, harassing each other with big smiles and kind eyes.  I had no idea until reading Diane's post that she had a difficult morning that day.  She didn't let on at all.  But then again, we were immediately laughing so much that anything which had happened up until that point didn't seem to matter much anyways.

Webster drove up from Tacoma, braving the traffic and distance to come meet.  When Webster arrived, it was amusing when this sweet lady walked around the corner into the Bistro area where Jen, her mother Mary, Rob, and I were already getting settled.  Amusing because she was recognizing and identifying Jen and myself.  I was thinking "is this Gretchen, Webster, Zoomdoggies or somebody else?  Please tell us soon who you are."

As soon as Diane came downstairs, the cameras and camcorders were brought out.  I shot a few short videos while observing the growing chaos, but since I did say that they wouldn't end up on the website, they won't.  And Webster, I still believe that your clip is one of the funniest of that introduction time.  "But you never know what we're going to say," says Webster.  So true, so true.

When Gretchen showed up, it was pretty exciting for me on a couple of levels.  Shortly after I first ever mentioned that I had both MS and RA, I received an email from Gretchen sharing that she too had both diseases.  Over the years now (I can hardly believe that it's really been years that I've known many of these folks online), Gretchen has provided lots of RA/MS support.  We even both use the same IV treatment, Rituxan, which is cool as it is not at all as common as some of the other RA drugs.

Jen of MS Strength was one of the MS bloggers I met in April at Joan's place in Delaware.  It was completely difficult to remember that this day in Seattle was only the 2nd time I had ever met Jen in person.  Very surreal to feel as though she lives across town and we've known each other for a long time.  And Jen, I so wanted to include the clip in which you stuck out your tongue, but I didn't.  Maybe next time.....

Along for the ride were Rob, my boyfriend, and Mary who is Jen's mother.  The four of us, plus Jen's friend Norene, later toured Seattle and boarded the cruise to Alaska on the next day.  There are so many stories to share about these adventures that I will save them for future posts.

However, before breaking up our meeting at Diane's place, Diane gave us all a special treat.  She sang a special rendition of "The Rainbow Connection."  I might be the only one who got it on film, so it must be included below.  Diane, you did such a wonderful job and I'm glad that we can share that with our wider MS blogging community.

Diane, your kind words to me as we were departing are very special and I thank you for those!!  Also, thanks for allowing a little hug.  We can leave the kisses to Jen.  She's good with the smootches apparently.  ;)



The Rainbow Connection and MS Bloggers Meet in Seattle

Back Home and Asleep

Finally home from a 10-day trip to Seattle and beyond.  There is so much to tell about what occurred during this trip that I will have to share each story one at a time.  Trust me, there is lots to share.

Now that I'm home, I've been downloading photos and videos onto my computer and sleeping for most of today.  I also note that a couple posts I had scheduled to go up while I was gone did not post.  So several are going out today, but with their intended date marked.  ;)

On the trip, I got to meet several wonderful individuals in Seattle and on the "Cruise for a Case" organized by the Multiple Sclerosis Foundation.  This cruise went up to Alaska and made a stop in British Columbia.  Lots of photos will come later.

One of many highlights of the trip included meeting other MS bloggers in Seattle.  Diane of A Stellarlife hosted a gathering and even serenaded us with a special rendition of "Rainbow Connection."  After putting together a brief video of the event, I will post it tomorrow. 

So many MS bloggers were met on this trip.  So much great scenery.  And much more great company.  More information to come!