Adaptive Sports - Scuba Caddy

This is something I will have to look into.

http://www.scubacady.com/description.htm

http://www.scubacady.com/inspiration.htm

One of the main reasons I had to quit diving over the past 4 and a half years is that my balance was too poor to be able to handle dive equipment safely. I have been lifting weights consistently at the gym for a year and a half, in addition to doing water aerobics and pracitce standing on the BOSU balance device. FINALLY, I have reached the point that I can stand and support myself with a scuba tank and weights on without falling over. However, walking with the equipment on and entering and exiting the water is another story.

Again, my legs quiver as if about to snap like when hiking and I stop to stand in the middle of a hill. It was a little embarassing, but I needed help getting in and out of the water on my first open water dive recently. The gear is just so heavy compared to the normal weight one carries around. Then when exiting the water it gets even heavier.

It made me go to the gym the next day and work harder lifting more weight. I do not want to be any kind of body builder but just be able to partake in the normal activities I did before losing balance. Even though I am strong and probably have the most muscle mass I have ever had in my life, the loss of balance will make me just crumble in certain situations. It is really amazing and something I could not comprehend at all until it happened to me.

Anyhow, it was kind of discouraging to realize that shore diving probably is not going to work out to well for me unless I have a couple strong buddies to either carry my gear for me or to support me on either side on my walk to and from the water. Further, the situation greatly limits the number of places I could shore dive in comparison to what I did before. As a result, boat diving, which can be costly, is the most ideal for me.

I was thinking how it would be nice to have poles or some type of cane or carrying device for diving. When doing a search on Craig's list for certain equipment, I came across the scuba caddy which could expand my opportunities and extend the length of years I could dive in the NW.

A portion of the sales of this adaptive device go to the following charities for disabled divers:

Diving a Dream http://www.divingadream.org/

Dive Heart http://www.diveheart.org/

Happy Fall, a very Happy Birthday!

At the Hammond Beach House in Pacific City, Oregon

My mom and I wearing our crazy masks

Although my birthday was on Monday which is the opening day of fall, Harley, my parents, and I celebrated over the weekend at the Hammond Beach House on the Oregon Coast.

Thanks Harley for taking the time off drive to Oregon, to go to my doctor appointments in Portland, and then also to go out to the beach for a few days!

Thanks mom and dad for joining us and the celebration!

Thanks Dave and Christie for letting us stay at your fabulous beach house! It is one of our favorite places to visit!

Friday we received wonderful news at my appointment. While the saga is far from over, we were very relieved to learn that I do not need a brain surgery this fall! It was a tremendous weight lifted off our shoulders so we were able to truly relax and just enjoy ourselves.

(I will write more later on what exactly my status means and my reflection on it).

Also, thanks to my friend LoAn for spending Monday afternoon with me on a walk with the dogs and taking me out to lunch for a warm and delicious bowl of pho!

A Beautiful Story I fell compelled to share

This has floated around the Internet and I am sure you may have seen it. I had seen it before but reading it again brings me to tears. My tears are of happiness that someone could stop what they are doing and have such an epiphany to impact a life in such a powerful and profound way, Also, I welcome tears as it was years that I went without any and could no longer cry. Many others with NF2 experience the same because damage to the facial nerve has disrupted the production of tears. Do you have any idea how frustrating it is to not be able to cry at all? How about at loved ones passing? Instead of tears incredible pressure built up around my sinuses resulting in an exhausting headache. Fortunately this function recovered and I can again release intense emotion through tears.

Back to the subject......this is a wonderful story worth revisiting again.

As she stood in front of her 5th grade class on the very first day of school, she told the children an untruth. Like most teachers, she looked at her students and said that she loved them all the same. However, that was impossible, because there in the front row, slumped in his seat, was a little boy named Teddy Stoddard. Mrs. Thompson had watched Teddy the year before and noticed that he did not play well with the other children, that his clothes were messy and that he constantly needed a bath. In addition, Teddy could be unpleasant. It got to the point where Mrs. Thompson would actually take delight in marking his papers with a broad red pen, making bold X's and then putting a big 'F' at the top of his papers. At the school where Mrs. Thompson taught, she was required to review each child's past records and she put Teddy's off until last. However, when she reviewed his file, she was in for a surprise. Teddy's first grade teacher wrote, 'Teddy is a bright child with a ready laugh. He does his work neatly and has good manners... he is a joy to be around..' His second grade teacher wrote, 'Teddy is an excellent student, well liked by his classmates, but he is troubled because his mother has a terminal illness and life at home must be a struggle.' His third grade teacher wrote, 'His mother's death has been hard on him. He tries to do his best, but his father doesn't show much interest, and his home life will soon affect him if some steps aren't taken.' Teddy's fourth grade teacher wrote, 'Teddy is withdrawn and doesn't show much interest in school. He doesn't have many friends and he sometimes sleeps in class.' By now, Mrs. Thompson realized the problem and she was ashamed of herself. She felt even worse when her students brought her Christmas presents, wrapped in beautiful ribbons and bright paper, except for Teddy's. His present was clumsily wrapped in the heavy, brown paper that he got from a grocery bag. Mrs. Thompson took pains to open it in the middle of the other presents. Some of the children started to laugh when she found a rhinestone bracelet with some of the stones missing, and a bottle that was one-quarter full of perfume. But she stifled the children's laughter when she exclaimed how pretty the bracelet was, putting it on, and dabbing some of the perfume on he r wrist. Teddy Stoddard stayed after school that day just long enough to say, 'Mrs. Thompson, today you smelled just like my Mom used to.' After the children left, she cried for at least an hour. On that very day, she quit teaching reading, writing and arithmetic. Instead, she began to teach children. Mrs. Thompson paid particular attention to Teddy. As she worked with him, his mind seemed to come alive. The more she encouraged him, the faster he responded. By the end of the year, Teddy had become one of the smartest children in the class and, despite her lie that she would love all the children the same, Teddy became one of her 'teacher's pets..' A year later, she found a note under her door, from Teddy, telling her that she was the best teacher he ever had in his whole life. Six years went by before she got another note from Teddy. He then wrote that he had finished high school, third in his class, and she was still the best teacher he ever had in life. Four years after that, she got another letter, saying that while things had been tough at times, he'd stayed in school, had stuck with it, and would soon graduate from college with the highest of honors. He assured Mrs. Thompson that she was still the best and favorite teacher he had ever had in his whole life. Then four more years passed and yet another letter came. This time he explained that after he got his bachelor's degree, he decided to go a little further. The letter explained that she was still the best and favorite teacher he ever had. But now his name was a little longer.... The letter was signed, Theodore F. Stoddard, MD. The story does not end there. You see, there was yet another letter that spring. Teddy said he had met this girl and was going to be married. He explained that his father had died a couple of years ago and he was wondering if Mrs. Thompson might agree to sit at the wedding in the place that was usually reserved for the mother of the groom. Of course, Mrs. Thompson did. And guess what? She wore that bracelet, the one with several rhinestones missing. Moreover, she made sure she was wearing the perfume that Teddy remembered his mother wearing on their last Christmas together. They hugged each other, and Dr. Stoddard whispered in Mrs. Thompson's ear, 'Thank you Mrs. Thompson for believing in me. Thank you so much for making me feel important and showing me that I could make a difference.' Mrs. Thompson, with tears in her eyes, whispered back. She said, 'Teddy, you have it all wrong. You were the one who taught me that I could make a difference. I didn't know how to teach until I met you.' (For you that don't know, Teddy Stoddard is the Dr. at Iowa Methodist in Des Moines that has the Stoddard Cancer Wing.) Warm someone's heart today. . . pass this along. I love this story so very much, I cry every time I read it. Just try to make a difference in someone's life today, tomorrow, just 'do it'. Random acts of kindness, I think they call it! 'Believe in Angels, then return the favor

Panorama Point

As I approached the famous Panorama Point on Mt. Rainier I threw my hands up into the air and exclaimed in exhilaration "I made it!". Unbeknown to me, a hiker saw me who was coming down the mountain from further up the trail. When I turned to face him I was a little embarrassed but then I thought "What the hell!". I did not care. If he had known what I had been through, he most likely would have done the same.

The very last time I had made it to this point was when hiking with my dad over labor day 2004. It was not even 2 months post radiosurgery for me and I was souped up on another dose of steroids to control the brain swelling I had been experiencing. Because it was still early in the swelling phase of the tumor, my balance and vision had not been fully affected yet. I actually had quite a bit of balance left and the steroids were carrying me through.

By spring of 2005, I experienced the apex of my loss of balance to the degree that I would fall over and not even realize it if I closed my eyes while standing on flat ground. It was very disheartening. With my soul so tied to the mountains and the sea, I was just devastated to be torn away from the activities I love (hiking and diving) and many more.

In 2005 I did not even visit the mountain. It was such a hard year. In 2006 I began to improve and we took a trip to the mountain for my birthday that September. For a change, I was not so concerned with reaching the highest elevation possible. Instead, we took the paved meadow trails and then with hiking poles I was able to make it part of the way up the unpaved trails. We reached my end point where the terrain became to rocky, uneven, and scary (I am not afraid of heights but of falling which is easy to do once you loose your vestibular function.).

In July 2007 I returned again with my aunt and uncle. The snow line was much lower at that time of year so we only went as far the fields of snow. The way up all the stone stairs was okay as I was using my poles. However, it was extremely slow going down and utterly terrifying for me! I imagine watching me inch my way down the cut out stone steps was similar to watching somebody agonizingly learn to walk again. It was pretty stressful but I had been determined to go up the far and had to bear the consequence of going back down (kind of like a cat climbing a tree).

This time it felt great and I went higher than I had with my dad in 2004. We (Harley and I) started out at the visitor center which is at 5400 feet. Panorama Point is at 6800 ft and we passed it. According to the map, the distance we traveled above the point, and the trail, I figure we went to at least 7000 ft. And did I mention I went all the way up without using my poles!? I used the poles for the way down but I felt fine and it was not so scary. I felt rather efficient and what took me so long is that I kept stopping to take photos! hehe ;o)

Here is a map showing our route: http://www.nps.gov/PWR/customcf/apps/maps/showmap.cfm?alphacode=mora&parkname=Mount%20Rainier%20National%20Park

End of summer flowers on Mt. Rainier

And I thought I had took a cool photo of the wildflowers at Mt. Rainier! Check this out: http://www.garyluhm.net/bio/tripsrainier.htm#

Our visit was on Sunday September 14th.

It is GREAT to be a survivor!

TSNW friday hiking group; I am pictured in pink on the right

TSNW = Team Survivor NW

It is a fitness and wellness support group for women cancer survivors and patients. Check out the link for TSNW in the left margin of this page under the heading "Places Where I Train to be a Survivor".

P.S. - For those of you visiting my page for the first time or are new to the NF2 Odyssey, I am also a cancer survivor. 15 years ago (Fall 1992) I was diagnosed with lymphoma cancer known as Hodgkin's Disease. This was 7 years prior to the time we discovered I had NF2. In fact, the reason I was diagnosed with NF2 so quickly after a poor hearing test in 1999, was that an ENT had reason to order an MRI of the brain. He had an idea that may bizarre hearing loss at such a young age could be the result of a brain tumor. He was correct! And it was just not A brain tumor but SEVERAL - reported as too many to count.

After finding out my head looks like a lit up Christmas tree from all the tumors, we had to determine if the cancer returned or if a different kind had started. Therefore , I had to go through all the fun of cancer testing all over again. (NOT! LOL). While it was a relief that I did not have brain cancer (back in 1992 the average survival was about 5 years for brain cancer), it still was little comfort that I had all these tumors up there for life which were incurable, would continue to grow, and chip away at my quality of life FOR THE REMAINDER OF MY LIFE.

Over the years I have been told that the cancer and NF2 are completely unrelated. I guess I just was not very lucky! However, it is very likely that my genes lack an essential tumor suppressor gene which made me susceptible to both. There are a few of us with NF2 and NF1 who have had or have cancer too.

I have learned to live with the losses and have worked very hard to get back what I can. This is my best year of the previous 4. So to me, being a survivor is even more meaningful as each day is a practice in survival to make the best of my situation.

Destination

Jane: "We are going to go here. - Middle Falls"

Me: "No. I want to go here! - Upper Falls"

Jane and I happy at the lower falls and ready to continue on.

Thursday September 11th, the anniversary of my terrible downturn last year with trigeminal neuralgia prompting a sooner date for my first surgery, Jane and I set out on a hike I have not been on in over 10 years. It was an absolutely beautiful day and perfect for a hike! The weather was great and the trail had a very low number of users. The reason I have not returned to this hike in so many years (even before I lost balance) is that it is very popular on the weekends so much so that the parking lot is always full.

This is the first time in 4 years that I have felt brave and confident enough to handle the terrain. Therefore, I wanted to go all out and reach the upper falls. Beyond that point is pretty back country and many people have gotten lost so there is a warning about being prepared and having the necessities for an extended hike.

Afterward Jane took me out for my favorite Thai food to celebrate my 31.5 mile accomplishment. What a terrific way to end a fabulous day of hiking!

Thanks Jane! Spending the day hiking with you was absolutely wonderful and the dinner was equally as marvelous!

I of course took many photos but will have to post them next week when I return. So keep checking back as there is more to come! :o)

Photos of the 31.5 mile trek

Harley and Jake at Rattlensnake Lake at the end

Mt Si along the road detour

Me along the Snoqualmie river 5 miles from the end

To view all the photos from our journey with descriptions, please visit this link: http://picasaweb.google.com/RebeccaDufek/315SVTQuest4NF2Trek

Update on my peanut

I did take Katie to the vet as soon as I could get her in a couple weeks ago. She is having arthritis in her hips so I had to give her pain medication, a week off, and then a week of very short walks. Thus, she definitely could not go with us on the 31.5 mile hike. The original plan was to take the dogs for 10 miles because I felt that was a comfortable limit for her without her hurting.

She seemed sad the morning of the hike but knew she was not going because she stayed on the deck and never came down to the truck when we were getting ready. After I had taken her to the doctor and given her pain medication without walks for a few days, she appeared to understand what was going on.

She tolerated the medicine very well and it worked wonders! We started out with a 30 minute walk a week ago last Monday and then built up a little more each day to 55 minutes. Thursday, Friday, and Sunday I did not walk them because I was going on extended hikes. Saturday evening we did hill walking in Daniel's ranch and then ran a couple laps last night around the dog park.

She is doing just great but I am careful to not overdo it for her. We will be gone Thurs-Sun so she will get another 4 days of rest which will help so we can return back to our hour or longer walks next week.

I am so happy that the medication worked out for her! She is really spunky and energetic so it is hard to see her hurting and to not take her when she wants to go for a walk.

Photo Frenzy

Good grief I take a lot of photos! I guess that can happen when you are gone for hours at a time in a scenic place. For now, I am uploading all the photos from our 31.5 mile HIKE4NF and later I will pull out ones that do not need to be there. I also have photos to upload from Mt. Rainier on Sunday, Wallace Falls hike Thursday, Tiger Mountain hike a couple weeks ago, the dive event photos from the same weekend as the 31.5 mile hike, and I think the photos from our 15 mile training session in Snoqualmie Pass.

I will definitely post the picassa link today for the 31.5 mile hike.

Tomorrow I have to get packed, go to water aerobics and lift AND walk the dogs, and then lie through at 2 hour spinal MRI. We are heading to Portland for my medical appointments and then to the beach. So there will be even more photos to come! Maybe I will not write for awhile when I come back and just post different photos everyday until I am caught up.

Anyhow, get ready for lots of photos and my absence for 4-5 days.

Hike Recovery

We are doing well! The first day we were a bit stiff and sore but the training, IB Profen, and ice water bath after the hike were very effective. Harley is back at the gym (Gold's in Redmond) working with his trainer while I have continued to increase my walking time per day (30 minutes Monday, 40 minutes Tuesday evening, and 55 minutes last night). In addition, it felt great to be back at water aerobics yesterday where there was the largest class I have ever seen since I started over a year ago.

The soreness is definitely gone but our energy levels have been kind of sapped. I was going to do my weight lifting routine at the gym yesterday but I was way too tired. I had a hard enough time staying awake on the 15 minute ride home from town. I was very tempted to pull over and take a nap! When I finally got to our driveway I was too tired to get out and check the mail so I fell asleep for a 25 minute power nap in my truck! The dogs were probably kind of confused why I did not finish driving up the driveway and was sitting in the truck for so long. Harley has been very sleepy too and immediately conked out on the couch when he came home from work. On Monday and Tuesday night I had already crashed before he got home and he was unable to wake me.

It is strange that way. I put all my energy into what I am doing and feel fine during the activity. Later, I am extremely lethargic and have a hard time keeping my eyes open. Perhaps I am running on adrenaline at the time until it becomes depleted.

Ready to Dive

On Saturday we went to the DOG (DUI Owners Group) dive rally to try out some of their demo suits. After nearly 4 and a half years since my last dive due to so many complications from NF2, I FINALLY rejoined the underwater world once again!

I had a challenge getting in and out of the water which required help but once I got in with my fins on (they kept falling off), I was very comfortable. The goal of this first dive was to see if I would even be able to tolerate it anymore. In the time which has past, I have become smaller than I ever was while a diver previously. So the concern was whether I would stay warm. Further, as of last year, I developed a condition where my hands are EXTREMELY sensitive to cold and my fingers loose blood circulation. The loss of circulation causes the fingers to turn white and stiff like frostbite. It is known as Raynard's Syndrome. My only hope was dry gloves so I had the opportunity to test it out before investing in some.

I am very happy to report that both my hands and body stayed warm. Thus, I can still dive in the cool and baumy 50 degree waters in the NW.

I have to admit that getting prepared and suited up to dive here is a very daunting and exhausting task for me now. But once I got under the water it was all worth it!

More to come with a dive report from Saturday.

Success! From Beginning to End

Harley and I completed our 31.5 mile trek yesterday from morning until evening within our estimated time.

It was great! Although it was a dense foggy all morning and did not burn off until 1 pm, it worked out well as that was during the time Jake hiked with me. He ate all of his snacks and drank all of his water and some of mine too! However, he was able to keep cooler for the 17 + miles without the hot sun beating down on us. He did wonderful!

The remainder of the day was sunny and beautiful! I took lots of photos I will share later.

Thanks to Harley for accompanying me on this entire journey. You are absolutely amazing and I am so extremely lucky to have the good fortune to be blessed with someone so loving and supportive! Thank you also to my parents, my sister, and my friend Jane (and of course Jake and my sister's dog Spud) for joining us and keeping company on various legs of the hike. You made the day very enjoyable and memorable! We greatly appreciate your participation, help with coordination, and your cheers!

Finally, thank you to all my supporters both in contributions to NF2 research and encouragement. You helped keep me motivated which not only was meaningful as far as raising funding and awareness for NF2, but also helped keep me healthy, in shape, and positive for the surgery ahead. I definitely feel a lot stronger going in this year than I did last year. I have not spent my entire summer fretting and being fearful. Of course, as medical reality draws closer, I do have thoughts and anxiety about the unknown and what possibilities exist. However, I am much more content. I spend more time being happy and savoring life than I do crying about it. I don't know if you are able to fully grasp what that is like...to have life hanging in the balance but to find ways to go on and get what there is out of life. It is an extraordinary gift which you have helped me to discover.

There will be more to come throughout the week about this journey. Like I said, I took lots of photos and for those who know me well, I can tend to get carried away. ;o) Keep checking back this week for when I post more. For those of you on my email list, I will be sending you out an email with links and pictures.

Thanks again for making this possible and helping me to believe in myself!

I'm in the news!

I forgot to post this and have not sent out an email yet as I am trying to figure out how to use an email campaign service. In mid-August Lisa Allen of the Valley View newspaper (serving Carnation, Duvall, and Woodinville) wrote a fantastic article about me and the hike that I am doing this Sunday to raise funding for NF2 Research.

To read it, please click the following link or paste it in your browser:

http://www.nwnews.com/editions/2008/080811/front4.htm

The injured.

My poor little peep (Katie) started limping around Saturday night and looked worse on Sunday. To refresh every one's memory and get all new visitors up to speed, Katie (our girl dog) had surgery in May 2005 for a cruciate torn ligament (ACL) and a dislocated knee cap. So we need to be careful with her, watch her weight, and give her joint vitamins.

For whatever reason (change in weather or taking off sprinting after an animal at the dog park), the previous injury has acted up and I will not be able to bring her with Sunday even though she would really love to go.

Sunday evening when Harley and I left to the watershed for a 1 hour training hike, Katie and Jake were overjoyed and jumping around as they thought they were going to come with us. Even though she tries very hard to hide it, I had caught her hobbling around when she thought I was not looking. Despite her eagerness and enthusiasm, we decided it would be best to leave her home to rest. I did not want to leave her behind alone so we did not take Jake and I do not think he was too happy about it. When he saw us getting into the car instead of the truck, he gave her a childish swat and look like he had just non verbally communicated to her that she ruined his fun time. (They are silly like that and share a great deal of nonverbal communication through looks, gestures, and mannerisms.)

At any rate, it was very obvious they were disappointed.

On Monday Katie did not seem much better and was limping like she had before her surgery. I gave her the full day to rest and when it came time to take a walk, it just pulled at my heart strings to not bring her because although she was hurting, she really wanted to go. She is a tough little girl and I have learned much from her perseverance in dealing with my own medical ordeal.

Jake loves to go out and even run too. He had waited all day for me and he did not get to go on Sunday. I could not punish him by leaving him at home when I had to go anyway. In order for Katie not to feel so bad and left out, I gave her a huge rawhide chew for her to busy herself while we went out for a walk. This seemed pretty effective the first day but was not as successful yesterday.

While doing dishes in the kitchen a couple hours before sunset, Jake jumped up to peer at me in the window behind the sink as if to say "I am ready mommy! We have to go or it will be dark soon. Don't forget me." So I definitely could not go without him yesterday either. He has been with me training for over 3 years (during my recovery after radiosurgery, imbalance, brain surgery, and for the Seattle marathon 2006 and the hike on Sunday). He deserves to come with as he too has been dedicated, has worked hard, and has been a loyal companion.

At first when Katie's injury developed over the weekend, I was thinking we definitely could not bring the dogs. I did not want to leave her home all day by herself because I knew she would be very hurt and know that she was left behind. We are all very bonded and it would not seem right to leave her out of such an important event for us. At the same time, I felt incredibly guilty to not take Jake on our journey. It was a difficult mix of emotions where I felt "between a rock and a hard place".

When Monday rolled around and Harley was training on the treadmill at the gym, his ankle began spasming again with sharp shooting pain. This had happened earlier in our training when we were intending a long hike but had to cut it back to 6 miles. He was wearing a high top hiking boot so we thought a low top comfortable training shoe would do the trick. Apparently, there is something greater going on and he will need to have a doctor look at it.

Therefore, Harley will not be able to join me on this adventure. He is disappointed but I do not want him to do irreversible damage to the injury by trying to do this 31.5 mile trek. This situation makes me feel better about taking Jake with me now as Katie will not feel so bad if Harley is home with her. Further, I am now considering taking Jake along for the entire first half of the trek to where the trail ends and meets the road as he has the endurance and stamina to handle such a distance. Originally, the plan was to limit the dogs to 10 miles because the next access to the trail was past 12 miles and I felt that would be pushing Katie too hard.

It will be interesting to see how he reacts come Sunday morning as he did not want to go without her yesterday. Make no mistake, he really was eager to go out and train but he wanted Katie to come too. Every time I prevented her from going up the ramp into the truck, Jake would jump back out of the truck bed. I tried giving her a bone but she brought it with her from the yard to the parking lot. Then as soon as I would try to put the ramp away Katie would put her front paws on the tailgate and try to jump up while Jake jumped back out again.

It killed me to say no and pry her paws off the tailgate. Imagine telling your kid he/she has to stay home while you take your other kid out to the movies, the beach, park, or wherever. Not so fun, eh?

I had to block the back of the tailgate with the dog ramp standing on its side so Jake did not jump back out again. When I managed to close the tailgate and was shutting the canopy window, Jake gave me a puzzled look as if he were wondering why I was not bringing Katie too.

One final injury to report:

Yesterday afternoon I got a sliver in my heel in a spot where I could not see to extract it. After poking and prodding my callused heel with a pin and tweezers, I was not having much success. So I soaked it in the bathtub in order to soften this skin and try to encourage the splinter out.

I managed to pull out half of it but the other half had broken off and was deeply embedded in my heel. When I took a walk last night, the heel was sore after an hour and I was concerned about infection. Therefore, this morning I assigned Harley the task of digging it out which was not a joy to experience.

Afterward, I soaked it in Epson salts and dabbed it with hydrogen peroxide in attempt to make it heal faster. It is a gorgeous day out and I would have a hard time adhering to the rest schedule which is today. So I guess this is God's way of making me take it easy to prepare for the big day and also creating a brick wall for me.

Are brick walls bad? No. As I learned this morning while reading "The Last Lecture", brick walls are a way of testing us....a way to force us to confront what we really want and how badly we are willing to pursue it.

I badly want to complete this hike. Why? Because people are counting on me. It is what I said I would do in exchange for your support in finding a cure for NF2. It is how far I am willing to go to get this started so that someday we find a way to stop these tumors from growing. I and others with NF2 will be able to stop putting everything on the line....... our lives and quality of life will no longer be at stake each time we face a treatment. That is why. All of this is my brick wall which I will find a way to climb over.

Shopping for Supplies

In the final week leading up to the hike, I am making preparations and getting last little odds and ends I need.

Sunday, on our short 1 hour hike in the Redmond Watershed, my rear end became completely soaked from my hydration bladder which was leaking from somewhere. Thus,,most of the water went ON me instead of IN me. That is no good! So I had to take a little REI shopping tour yesterday to find a new water bladder.

In addition to needing a new bladder to hold all of my water, I decided it would be a good idea to buy new batteries for my head lamp. I am shooting to complete the 31.5 mile trail by 7 pm. Although the sun sets by 8 pm, the final 6 miles of the trail are tree covered and quite dark. When we hiked the watershed Sunday night we had to cut our training 20 minutes short because the park closes at 7:30 pm which in the forest is considered dusk.

In the event that I end up behind and not keeping my intended pace, it is quite possible I will end up on the trail at dusk or in the dark. Therefore, I felt it a good idea to bring my head lamp and have it ready just in case. Once it turns dark I slow down as it is harder for me to walk with my imbalance. As a result, if I end up in that situation it will take me longer. Fortunately I have a very high power head lamp which puts out lots of illumination.

I do not have a good history with sunglasses. Within this summer alone I have lost 3 pairs and broke 2 pair. One pair it is unknown where they disappeared to, another I lost while training when I took them off in the dark woods, and the other fell down the honeybucket hole when they flew out of my pocket while I was trying to pull out a handy wipe. After investing in yet another pair on Saturday, I finally broke down and bought a sunglasses retainer yesterday during my supply hunt outing. The retainer is a cord which attaches to the sunglasses so I can keep them safely draped around my neck whenever I take them off.

The last item on my list was a new hose clip for my hydration pack. The old one was velcro and had become worn out to the point which it did not fasten well anymore. Camelpack makes a new kind which snaps shut so I will not have to worry about developing the same problem again.

I am pretty sure I am all set. The only thing I can think of off the top of my head is some mosquito repellent. When we did our 15 mile hike the bugs were coming out in full force around between 5 and 6 pm. Now that it is weeks later and cooler, it is pretty certain they will be out earlier (especially seeing that the trail crosses a river in the final portion and ends at a lake). A lady I know who lives nearby sells Avon so I am hoping she has some trial size bottles of "skin so soft" as I prefer to use that over stinky repellant.

This is a good reminder to make a list to make sure I do not forget anything critical (like my water bladder I forgot last week).