My MS Journal: April 2007

Women's Wellness Retreat

As previously promised, over the next week or so I will be posting about the Women's Wellness Retreat that I went to March 30-April 1 on Bainbridge Island. I was not only fortunate enough to attend this retreat but I was part of the planning committee, which was such a great experience in itself. I met many wonderful people who live with MS everyday. They are all strong, inspiring women and it was great to get to know them over the three days I was there.

The weekend consisted of several talks and activities. There was great food, all of which was either from the lodges organic garden or local farmers. The lodge (Islandwood Resort) is all built with sustainable elements. It is such a beautiful location!

Today I will not get into the specifics of the talks, but I will let you know what you can expect. We heard from wonderful speakers like Mo Manley - Life Coach/Olympic Cyclist, Allison Shaddy, LCSW and author of MS & Your Feelings (a book I highly recommend everyone getting), Melissa West, MS - Inspirational Speaker and author, Laurie Mischley, ND - Naturopathic Doctor who works with neurological conditions and nutrition, Lily Ju ng, MD - MS Specialist at Swedish in Seattle, Bobbie Severson, ARNP - practitioner at the MS Evergreen Center as a MS Specialist Nurse, consultant, lecturer and contributor to MS publications, and last but not least Molly Kenn y, MS-CCC - nationally recognized innovator, researcher and educator in the field of yoga-based therapy (she lead us through a yoga session, which was great). The topics included: Investing in yourself, Stress Reduction, Coming to Terms with MS, Sex, and more.

As I feel this was great information to get as a person with MS, I thought it would be great to share it all with you. I hope that you are able to take something from this and apply it to the areas of your lives that you feel may be helpful. Let's all live well with MS!

MS Walk 2007

*Click for MS Walk slide show!

The MS Walk - Kennewick was a great success! I am so proud of my team. They really came through for the NMSS. Grand total: just under $3000. :)

The day itself turned out to be a good one (although we were wet!). I arrived at the site at 7am in order to help set up. I was amazed to see how many people were a

lready there working to make the walk run smoothly. I am not sure the actual number of people who showed up to walk, but there must have been around 400 of us. Considering it was raining this is great! Personally I did not mind the rain as it helped me to stay cool. Unfortunately I think my dad ended up with a cold though. Anyway, we had a DJ, lots of information from the various drug companies, a new tent called the MS Experience tent (which I worked in), a face painter, massage therapist, and more.

Not all of my team was able to be together for the walk. The kids arrived late (I think they slept in, lol) and one of my

team members I have never met. Then I had a couple people on my team that were unable to walk due to having to work that day/medical conditions that prevented them from walking. Over all I ended up with 17 people on my team. Not too bad for the first year! I think next year I need to start earlier in the year in order to raise even more money. I am very pleased with how well everything came together and how much we raised. I am so grateful for the support that I have been given by my family and friends as well as from my sponsors, Aztlan Sportsware, Sn ipes Mountain Brewery, & Madscientist Graphics!

By the way, Aztlan Sportsware made our shirts and they gave me a few extras. Taking a note from Kim at Mandatory Rest Period, I have decided to auction them off in order to raise even more money! I will let you know as soon as I have it all set up for auction. In the meantime, I hope that you are all doing well and having a great weekend. Take care of yourselves. :)

Port

Last Monday I travelled back to Seattle to have a port-a-cath placed. The surgery went well! I was very impressed with how efficient the staff at Swedish is. My doctor was wonderful. He came out and talked to me about the port, what it is (even though I already knew about it He wanted to make sure I was well informed). He was even considerate enough to make sure to get the port in a place that would be most comfortable for me. He drew on where my bra straps hit and put it in the left side as I am right handed.

The ride home after the surgery did not go as well. I don't always respond well to anesthesia and pain meds. I slept most of the way but got sick before we made it home. To be on the safe side I went to stay at my parents for the night. Fortunately I am all better now. The pain went away after a couple of days and the site is healing really well.

Yesterday I had my third dose of Novantrone. I definitely recommend anyone going through chemo getting a port. It was so quick and easy this time. I debated getting the port because my chemo is only once every three months and it seemed to me that it would not be necessary, but as it turns out my veins did not want to work anymore. The chemo seems to wear off about a month before my next one is due, therefore I have been having to get IVSM as well. Not to mention all of the blood draws that I get for my various doctors. The last 3 times I had to have an IV put in it took them on average 1 hour or more to get access. I have so much scar tissue built up and the veins just don't seem to respond. My last chemo took just over 4 hours...most of which was them getting the IV in. Yesterday was slick. They just hooked it right into the port and I was done in about 1 1/2 hours. Very smooth. Now I am just taking it easy as I still have some nausea. Soon enough though I will be back to feeling good! :)

I hope all of you are doing well. Please take care of yourself.

Stem Cell Research Enhancement Act

Pass the Stem Cell Research Enhancement Act Now
Senate Stem Cell Vote This Week Take Action!

Urge Your Senators to Vote Yes on S. 5

The Senate’s first order of business when they return from recess on April 10 will be to consider the Stem Cell Research Enhancement Act (S. 5). This legislation is a priority for people with multiple sclerosis (MS).

Debate on the bill is set to begin Tuesday, April 10 with a vote to occur by the end of the week. Modified from the version passed earlier this year by the House of Representatives, The Stem Cell Research Enhancement Act (S.5) now includes language that encourages NIH to pursue other forms of stem cell research. We ask that you call your Senators prior to this vote and urge them to support S. 5.

While the Senate debate will focus on S. 5, an additional stem cell research bill known are the Hope Offered through Principled and Ethical Stem Cell Research Act or the HOPE Act (S. 30), is out there. It is meant to serve as a distraction, and we are not currently taking a position on it.

Please contact your Senators today and urge them to vote YES on S. 5. Call the U.S. Capitol Switch Board at 1-800-828-0498 or click Take Action above for the direct phone number to your Senators in Washington.

Our message is clear: There is only one stem cell bill that matters, one vote that will advance stem cell research, one vote for people with MS, and that is a YES vote for S. 5. - the Stem Cell Research Enhancement Act.

Happy Easter!

It feels like forever since the last time I posted anything. I know it has only been a couple of weeks, but it feels much longer. The month of March seemed to go by in a blink and I just can hardly believe it is April already. Where has the time gone?

Things have been busy around here. I am doing my best to conserve my energy as I just don't have time right now for my MS. The steroids have helped me get back on track, even if only temporarily until my Novantrone on the 16th. So, what has been keeping me so busy? The NMSS for one. :) I was involved in two programs for people with MS in March and then of course the MS Walk is coming soon! The first was a Dinner for Two for people with MS between the ages of 18-30 who live in central Washington. There were not as many people as we would have liked to have seen come out for this, but it turned out to be a great night. I met a really nice girl, Arika, who is from the same town I live in and we were working together for the program. She has since joined Team MMSJ and kicked major butt raising money for MS!

The second program was a Women's Wellness Retreat on Bainbridge Island. This was a 2-night, 3-day retreat with approx. 65 women from all over Western and Central Washington. We had speakers each day on a variety of topics, great food, stayed in a beautiful resort, and more. As I feel the information is of great value to everyone with MS I will be doing several posts about this retreat.....to give you the information that we were given by the speakers (so watch this space!) And, of course the next big event is the MS Walk. It is next weekend and as of right now my team consists of 16 walkers that will be at the event for sure, and 3 walkers that as of right now are "virtual walkers" because of work conflicts. We have raised a confirmed $1800. with more money collected. By time of the walk we should have over $2000!

You may have noticed that I have added a bunch of links to my site. I now have a section for Team MMSJ and links to businesses that have donated/helped us along the way! I also now have a section called Must See Sites. These are all amazing women who either have MS or have some how been involved with Multiple Sclerosis. I met each one of them at the retreat and highly recommend that you visit their sites.

You will probably not hear much from me until after the walk and my chemo on the 16th as I have a very busy week coming up. I am traveling back to Seattle (3rd time in one week period that I will have been in Seattle) early Monday morning. I have to be at Swedish Hospital at 5:30 am as I will be having a port-a-cath placed at 7:30 that morning. My veins have had it and so this is the next step. I then have my oncology appointment, pre-chemo labs, and a couple of other appointments in the upcoming week. Not to mention getting all the last minute things ready for the walk.....most everything is done though. I just need to pick up my team t-shirts and our committee needs to haul everything to the site and set up the day before and morning of. I will start back to regular posts after my chemo as things are surely to slow down!

Well, I hope that you are all having a wonderful Easter weekend. I am spending it with my family and some friends. We will have a nice dinner together and of course we have everything set for the kids to find Easter eggs! Take care.