Gratitude - What are you thankful for?

Over the past week, gratitude is a theme which keeps coming back to mind and has ironically been appearing in books and blogs that I read.

As suggested in the book "The Secret", Harley and I started a new daily ritual of starting out our day by thinking of something we are grateful for. I took it a step further and said everyday we should seek to find something positive. We have started journaling our entries daily and normally at breakfast we ask each other what we are grateful for.

Today I am incredibly grateful that I have life and a quality one at that! I am filled with overwhelming joy for a successful recovery and a year with out surgery as was anticipated. I am higher than a kite to have escaped dealing with surgery/treatment for 2008 and I have nearly been off steroids for a year! (I had to take them until March 2008 post surgery).

This was a really good vibe to start my day. So to add to that, I already picked my positive which is that the sun is shining and I woke up feeling good and "normal" this morning. This is after struggling the previous couple mornings with a bad headache, nausea, and fatigue. It is so wonderful I can actually think this morning. A bonus to this is that I went for over an hour run last night and felt great doing it which is absolutely marvelous!

Yesterday morning I did not feel so well until after I read Stephen Hopson's latest post on Adversity University Blog. What was his theme?

GRATITUDE!

I hope that it inspires your day too! :o)

Adversity University

"WOW! Every single cell, nerve, tissue and organ in my body was tingling with excitement"......(click to read more)

P.S. - Thank you to my dear friends Skip and Olivia (The Fabulous Running Mommy) for being the first donors in my fundraising campaign for NF2 research! You made my week and setup the drive for my last 3 successful runs (and one was 6 miles and the other 5-5 1/2 miles). You both are awesome people and I am so grateful and lucky to have you in my life!

Unlocking the Mystery of Propolis

In the NF community, propolis is the hot experimental topic right now. Studies done in Germany and Japan have revealed NF tumor suppression in mice. Currently there is an unofficial worldwide trial going on. About 100 people are taking the supplement Propolis BIO 20 from Manuka Health in New Zealand.

Patients around the world have only been taking the Propolis within the last year so there are many questions in everyone's minds and those quietly waiting for results while asking themselves "Should I start taking it too?".

Other than the hope that it brings in suppressing tumors and holding off the need for future surgery and treatments, Propolis is very attractive because it is a non-toxic health supplement with almost no risk (I say almost because there is a very small percentage who may develop an allergy to it). Further, the benefits from taking propolis are great and it has been used by many cultures for many ages. So it is a win-win situation worthy of a try if you have NF2.

But before you take the final leap and even if you are already taking it, here is some great information to better understand this supplement. And the benefits are not only applicable to people with NF2, but virtually anyone who meets the requirements (an example of those who do not are pregnant women and possibly asthmatics).

By the way, this supplement is currently being researched for treating pancreatic cancer and HIV.

What is Propolis?

Benefits of Propolis

History of Propolis

Safeness of Propolis?

Propolis Allergy

I hope this information helps answer your questions and also introduces many of you to the benefits of this fantastic health supplement. Remember, THIS IS NOT ONLY FOR NF2 PEOPLE BUT EVERYONE!

I justed ordered a 3 month supply today from Manuka Health in New Zealand and will keep you informed on how I react to it.

By the way, I have been drinking Green Vibrance every morning and really enjoy it! I eat vegetables, but for those who do not, you should really consider drinking the green vibrance mixed in your favorite juice!

Hard Lesson on Deafness

As most of you know, I have been completely deaf since July 2004. When I say completely, I mean that I hear nothing what so ever (not even any environmental sounds). It is challenging at times yes, but I am pretty comfortable and content with my deafness. I was fully hearing until the age of 27 when it was apparent I was starting to experience hearing loss. So unlike so many I have met and know, I was able to enjoy activities in my youth of being a hearing child (dances, band, stereo systems, headphones, concerts, proms , pep rallies, the excitement theater systems in the movies and IMAX, etc.).

It was very emotionally painful at first to face and accept that I was about to lose all of that part of my life and inevitably completely. However, I was lucky to have a period of 5 years during my more mature phase of young adulthood to adjust and adapt to my gradual hearing digression while my hearing self faded further and further away.

When all sound went out, I have to admit it was nothing I could have imagined nor fully prepared for. It was an entirely different world than being hard of hearing. When you are hard of hearing, you are still in some way part of the "hearing" by whatever little you can hear. That can mean just being able to hear the siren of an ambulance or firetruck speeding closer behind you. (A dear friend of mine felt just horrible that it took so long to notice the ambulance speeding up behind him as he was unable to hear it).

So the past 4 and a half years for me have been an exploration of what it is to live "truely" deaf, how to cope, and how to adapt. My first BIG lesson was to NOT start adding water to the sink in preparation to do dishes and then walk away only to forget about it! LOL Thje result an hour later was to come downstairs and discover the area around the sink of my kitchen flooded!

This happened only within the very first months of my deafness and for the most part, I was able to keep myself from repeating that mistake (I may have slipped a couple times). I did go through a phase of leaving the water running in the bathroom for hours at a time which did not make Harley too pleased. By now, I am pretty good at reminding myself to look at the faucet and make sure I turned the knobs ALL the way off before leaving the room.

Yet, after all these years of adjustment and just when I thought I might have it down pat, a new thing to learn arises. Why it did not happen earlier is because I made a fiarly recent change which one would not expect to have any impact. Maybe about a year and a half ago I bought a tea kettle for the stove. Now I never used one when was a hearing person and that is why I would not think much about it. For hot water, we always just zapped it in the microwave. But as my husband and I became more serious tea drinkers and started using "loose leaf" tea, a need grew for a tea pot for the stove.

Also with the deafness, came a change in the way of communication. No more yapping on a cordless phone while doing things in the kitchen. When it is kitchen time, it is just that and nothing else (well I suppose I could sit down and read which sometimes I do but not usually while cooking). Instant messenger and email have almost entirely replaced using the phone (unless the need is immediate and I have to contact a business, doctor's office, or the health insurance company).

I am sort of a computer addict. LOL I just can't seem to help myself. There is always something there to entertain my mind and it all changes so fast (and trying to keep up with several emails a day). If you look at my monitor, you find it burdened heavily with several open applications at once. I LOVE to multitask on it and be doing several things at a time (none of which are games or watching a movie).

Too impatient waiting for the water to boil in the tea pot, I ran upstairs to my computer to return to whatever I was so enthralled in or distracted by. While doing so, I engaged in an unexpected IM conversation with a friend and then also a family member at the same time.

As a half hour passed, I completely forgot about the few cups of water boiling away in the tea pot downstairs. I looked down from the loft and saw Katie running back and forth on the deck and wondered what she was doing. A few minutes later and right when Harley walked in the door, I remembered the tea pot and told my friend I had to run. Harley comes up the stairs and signs to me "What is going on?!"

The kettle must have been whistling for a very long time as ALL the water evaporated and the kettle melted to the burner of the electric stove! Imagine that, eh!? Harley was not too happy with me for leaving the kettle unattended and creating a potential fire hazard. The above photos are the destroyed kettle which resulted from my lack of attentiveness.

Think I would learn the lesson after one time? Well no, it is not that easy. We now have a gas stove installed so it is probably even more important not to leave something unattended. Again, I put the new kettle partially filled with water on the burner and went back upstairs to the computer. Luckily, I remembered after some time that I was boiling water and I returned before all the water evaporated and ruined the new kettle! Phew!

So now I have to come up with a routine and way to remind myself not to walk away from the stove. One of my added goals for the year is to read a list of 5 books that I have. Perhaps I can make it a practice of scheduling "reading time" at the kitchen table for whenever I am cooking or boiling water and need to wait.

On to the Next Phase

If you have not gathered by now, my life with NF2 has become a series of phases over several years. I often consider this rebirth as occuring in late 2004 after the radiosurgery. That is when things really became serious and I was confronted with making a treatment decision due to very substantial growth of one of the tumors. The radiosurgery that I held so much promise for did not go as smoothly or as easily as planned unfortunately. As a result, I was left with some devastating side effects I had to learn to adjust/adapt to.

But when reflecting back on it deeper, my transforation dates all the way back to July 1999 at my diagnosis. Even though though the events since 2004 dealt me a heavy blow, initially there were the phases of acceptance and learning to survive being different (as I lost my hearing).

All this has been emotionally and physcially taxing and have taken their own time to heal. With a good handle on the physical and mental challenges now, I am able to focus on the next steps (fundraising for research and alternative treatments).

So I have tried out both radiosurgery and brain surgery. What else is there?

I am not to the point of desperation yet where I feel the need to try out drugs in clinical trials or chemotherapies. Call me selfish, but I am doing well enough that I do not want to offer my body for experimentation. Having gone through cancer treatment years ago and having experienced difficulty with different medical drugs, I just do not want to put myself through anymore for a reason which would not benefit me personally. I know that sounds bad but I rather run a marathon than be a martyr.

The other option which has come to light over the past year is a supplement from New Zealand which a researcher has discovered to suppress NF tumors in mice. (Propolis Bio 30)

I first read about it back in 2007 around the time of my surgery. Since then, at least 50 people in the country have been giving it a try and have not experienced any side effects. The only reactions have occured in patients allergic to bees.

So to play it safe (as I have seen the result of horrible allergies and have had negative reactions to certain drugs), I scheduled a bee allergy test which was performed yesterday. I was tested for different strengths of 5 different bee venoms. My prayers were answered as I did not have a reaction to any of the venoms. Therefore, I am very happy to report that I can also begin taking the Propolis Bio 30.

There is not enough information yet to know if the supplement will actually shrink the tumors (although in some of the mice that did happen). The point in taking the supplement is to keep them from growing further and thus protect my quality of life by keeping the tumors from compressing critical structures (resulting in negative side effects). It could very well be like every other option.....What works for one person, may not work for the next.

Yet at this point where I stand, I have nothing to lose (except money ;o) ) if there are not any serious side effects from the supplement. What I have now is worth preserving! It sure puts life into a proper perspective. So currently, I am on a path to be as healthy as possible. I just gotta kick the sugar habit like the chocolate chips I ate today! LOL At least they were dark chocolate which has antioxidants that are good for you. I gotta stop using that excuse now that I get a healthy dose of antioxidants in actual "good" things for my body (berries, purely pomegranite juice, green vibrance drink, and FRS liquid and sport chew supplements). I don't NEED the chocolate now but it sure tastes fine!

For more information on these supplements, visit the following links:

FRS energy

Green Vibrance

Purely Pomegranate

Propolis Bio 30: Manuka Health Industries

Announcement/Implementing a Goal

I am 99% committed now. The final step is to work with Deb Hanlon of NF Inc. to get officially registered for the Eugene half marathon on May 3rd.

http://www.eugenemarathon.com/

I completed the first couple steps already:

a) to write it down on a sheet of paper posted next to my computer

AND

b) to commit myself to a training program and to write/report about each run

I tell Harley each time I successfully complete a run and I have also been reporting it as my status on facebook. So those are 2 big things to help commit you to a goal (writing it down where you will see it and be reminded of it everyday & getting started on the project and reporting your progress).

To be completely honest, while I am running I get determined to finish and complete it because I don't want to report that I failed. It is empowering to be able to say that you followed through. When you commit to other people, it holds a lot more weight than if you only committed to yourself or kept it secret. It is a HUGE motivator.

I was exploring some more half marathon tips/training (geared to the first timer) and I came across some great advice from www.DailyRuns.com.

Here are the tips which I have begun implementing:

"Staying Motivated"

"Speaking of goals, write yours down. Why are you running this half marathon?"

"A few more tips for staying motivated:"

"1) Chart your progress. Sign-up for a free online tracker where you record your workout, speed, time, distance, energy level, heart rate, and even the mileage on your shoes.

2) Sign-up for your race. Why wait? Go online today and sign up for your race, confirming your commitment to make it happen.

3) Tell everyone you know you're running a half-marathon. There's a two-fold advantage to this strategy. One, people will be impressed. That's always fun. And two, now you're on the line to report how you did in the race. Extra laps, anyone?

Running for Charity

4) Another motivator is to make your race about more than just you by participating in a charity drive."

Today I officially announced on facebook what I am doing. Up till now, I had only mentioned going on training runs but did not say why.

I also discovered an online training log through active.com where I can document my progress and keep track.

My final step is to actually get registered (which NF Inc. is helping me with) and to setup my fundraising page this week. That is a big one. The physical training is one part but the actual fundraising is another which can be emotionally and mentally demanding.

I have taken a short break for the past month and a half - 2 months to re-energize in this area. I am a person who cannot be "on" 24-7 and I need to ease back for a little bit before taking on the next project.


As you know, I am also a patient of what I am advocating for and to be effective I must get in touch with the realities and possiblities which are part of this disorder. For the most part I have been pretty lucky (lucky that my face is not badly disfigured, I can still see out of both eyes, I am able to eat normally and can eat what I want;no feeding tube, I am able to do physically demanding activities still and am not dependant on a cane or need a wheelchair, aside from some memory loss I am still a pretty smart person and my brain pathways have continued to improve since the radiosurgery in 2004, I have only had 1 brain surgery so far, I have not had a spinal surgery, I have only had 1 surgery overall and I am the amazingly late age of 37, and I did not begin losing hearing until my late 20s and became completely deafened in my early 30s). Yet, others are not so lucky and the NF2 community has had to deal with some deaths over the past few years (one as recently as Dec 26th, 2008 of our beloved web master who was only 33). Further, someone is always going in for a surgery or treatment and the anxiety is high for everyone. It happens so often that it is hard to keep track of everyone who is having surgery! So believe me when I tell you that I am extremely blessed and lucky make it this far with only 1!

All this really wears on the soul and morale. I think I can speak for many when I say that the question repeatedly pops inro our heads "Is the same thing going to happen to me? What more is to come and how long before it happens?"

But I am getting off of topic now. The issue I wanted to bring forth is about the steps to actually implementing a goal. I hope my marathon training provides you an example of how to get started and I would be honored to have you follow along with my progress.

Why am I running a half marathon by the way? (I never really mentioned it.)

A) May is NF awareness month and I felt responsiblity for representing us in the NW. The Eugene marathon in Oregon is the only NW marathon in May where I could get this kind of exposure (I will be wearing the green run4NF running jersey.) Thanks to Deb Hanlon of www.run4NF.org for notifying me about the event. I am the first and only person with NF2 in the NW region to do this (a few of us throughout the country who are able have been taking on marathons for our cause over the past few years).

B) Since I walked the full Seattle marathon in 2006 with Team in Training, I had been approached to complete a marathon as a fundraiser for NF. So I had been thinking about it since 2006 but building myself up over the years. (I had brain surgery in fall 2007 so I had to hold off of a major endurance event.)
I did not know back then that I was going to try running one. I could only run for about 10-15 minutes at a time. In May 2006, I ran 3 miles around a high school track in the Relay for Life and collapsed from weakness. My legs gave out and I could not stand up. It was rather embarassing as the paramedics rushed over in front of the everyone attending at the stadium and track.

C) I really like the spring and Eugene is a nice area that my parents live near. I can take a weekend trip to visit them, raise NF awareness, and pursue an ambition all at the same time! (hehe I guess I like to multitask!) ;o)

Alright! Enough taking about it now! I gotta go out and DO!

The"supreme" health drink

Earlier I was discussing white tea and I did not really get into explaining why it is so beneficial. Of all drinks, white tea is highest in antioxidants which are important in fighting "free radicals" in the body which contribute to disease, cancer, and aging.

In order to acquire the white tea with the highest concentrations of antioxidants, it is critical to purchase the most recent harvest and to store it correctly.

The following site which I included in my last post is absolutely fantastic and explains all this in detail. If you are interested in becoming a white tea drinker, this is the perfect place to start learing about it.

http://www.whiteteacentral.com/

Little Changes - Shooting for the Optimum

I am on rest day today of the second week of half marathon training. My 2 runs this week went pretty well but I have been tired and stiff in the morning. As such, I opted out of water aerobics this morning. I am not that exhausted but the frost on the ground and a chilly house was enough to deter me from jumping into a cold pool today.

To warm up and get my energy levels fired up this morning, I am drinking a mug of winter spice white tea. I am not a coffee nor caffiene drinker but there are certain healthy exceptions (white, red, and green teas).

To learn about the health benefits of white tea (considered the "supreme" health drink), visit these websites:

http://www.teabenefits.com/white-tea-benefits.html

http://www.whiteteacentral.com/healthbenefits.html

Another couple health rituals I starting trying are the "Whole Body Cleanse" system by Enzymatic and consumption of "Green Vibrance" by Vibrant Health.

I tried the Whole Body Cleanse system for a couple days this summer but it did not work out too well as I was deep into my distance walking training for the 31.5 mile hike in September. I discovered it was not a good idea to start it when you plan to walk many miles and be far from any bathrooms for hours at a time! hehehe

But right now is early in my training and I have decided to keep to week 1 of the schedule to ease into running several times a week so that my body can adjust. I am only running 3-4 miles a day which takes me 30-40 minutes. Therefore, right now seems like the most ideal time to try it out (2 week program). I felt I needed it because last night I bloated up like a 3-4 month pregnant person for whatever unknown reason! Could it be that I just put too much junk into my system from the holidays? Then I topped it off with almost daily consumption of 2 extra dark fine chocolate truffles, a couple pieces of carrot cake last week and then black forest cake this week because I thought I could "afford it" with my increase in weekly running?

In any case, that was not too fun blowing up like a blimp last night! I actually topped the scale over what I have been at for the last 3 years or more!. So something had to be done and something was definitely wrong. I am hoping this cleanse will get my system back on track and a fresh start with a healthy body.

For over a year now, Harley has been trying to get me to drink "the green" powder and I have refused. I like to eat vegetables but that is different than drinking a cold green vegetable. I don't know. I just felt turned off by drinking something green. (chuckle) It smells like a vegetable too which makes it even more of a challenge to change your mind about. But we discussed it last week and he mentioned that he puts juice in his to make it palatable. "Hmmn" I thought. "In that case I can give it a try."

So Monday night I bought a carton of Peach, Mango, Orange juice to try it out this morning. It still was not incredibly appealing but I was able to gulp it down. Unfortunately, I put the powder in first and then the juice (in an old washed out smoothie container) and half of the powder stuck to the bottom. I did not discover this until I had almost finished the drink. So I added about a quarter cup of water, replaced the cap, and gave it a good shake to loosen the powder and mix it up. Now the concoction was almost all water and the green powder. It was not at all flavorful but I managed to swig it down quick. I DEFINITELY will be trying out different juice combinations to produce the most pleasing cocktail. Light Strawberry Banana V8 is my favorite juice so I think I will give that a try.

Green Vibrance by Vibrant Health:

http://www.vibranthealth.org/gv.html

Why am I even considering drinking this green stuff? Well, regarding the training for the half marathon, I need the best possible energy levels and endurance I can achieve. Regarding NF2, I need to maintain the best overall health possible to ward off any ailments that compromise my system and to be ready with the greatest level of immunity for further surgeries or treatments. Really, my goal and what I would like is to hold off ny surgeries as long as possible or forever.

So who will win....me or the NF2? I will fight and even drink the "green" juice to maintain the quality of life I have been given back.

Addtional Note about the NF2:

Monday I finally consult with an allergist to see if I have an allergy to bees (I have never actually been stung!). The reason is to find out if I can undergo a trial with a supplement which was been shown to suppress NF2 tumors in mice. The supplement known as Bio 30 Propolis is made from honey bees in New Zealand.

Apparently the flowers in New Zealand are more "pure" and concentrations of the bioflavinoids are higher than those harvested throughout the rest of the world.

To read the October 2008 release of the article "NZ firm's dollar-a-day bee compound halts tumour growth in cancer trial patients", Visit

http://www.manukahealth.co.nz/main.cfm?id=4&nid=16

1 week down, 15 more to go!

I past the first week of the half marathon training of an intensive and fast 10 week schedule. That was the test....to see if I could at least make it through one week. Surprisingly, it went pretty well and I still made it to water aerobics class one day and kept up with my 3 day weekly weight lifting.

I completely forgot to stretch (or rather was running short on time) Friday night so I worried about really feeling sore yesterday and today. So far I am a little sore (more like getting old kind of stiff in the morning) and a little tired but not bad.

Yesterday was rest day so there was nothing rigorous and just really mild leisurely walking along Alki when we visited West Seattle.

When I got up in the morning I started to get the weakness episode again which feels sort of like a cross between a head rush and a passing out where you collapse. By now, I have become accustomed to this feeling and can kind of control it. It is similar to when you are aware that you start getting narced while scuba diving. The few times that has happened to me while diving, I could feel it coming on and knew the signs. Therefore, I was able to stop what I was doing, focus on something, and ascend.

In the case of the weakness episodes, when I feel it starting, I usually grab onto a wall or stationary object while trying to focus on something straight ahead in my visual field. After the feeling seems to peak, I try to get myself into a position of rest such as lying down or sitting. My legs seem to give out during the episode so getting the pressure off of them seems to alleviate it and help me recover more quickly.

So this happened to me yesterday morning and I have concluded over the years that this is from dehydration. On my rest day (Wednesday) after water aerobics, I went to soak for about 8 minutes in the hot tub. I got very warm and when I got out, the same thing happened to me but more intense.

Luckily, I knew what was happening so I was able to hold onto the sturdy hand railing of the tub until I could make it over to the wall. Once I was confident it had passed, I worked up the bravery to move over to a chair to sit and rest for a few minutes before walking to the locker room.

Anyway, these incidents seem to occur when I may have not had enough water intake. So when I felt it coming on yesterday morning, I immediately lied back down and as soon as it passed, I drank the glass of water I had waiting for me on my dresser.

Seeing this occurred twice in one week, I can predict that it will happen again or maybe even more often during the training. I determined it would be a good idea to always have a glass (plastic) of water waiting for me next to my bed for when I awake.

This fist week has been an experimentation to see how I feel, test if I could run regularly (13-14 miles in a 4 day week), try out different clothing layers and my new running shoes I got for Christmas, monitor and make little adjustments to nutrition and supplements, evaluate how my body responds to repetitive running added to my weight training, and test my comfort and form while running with Katie.

At this point this is what I discovered:

My body felt OK with the first week of running 4 days a week. The final day of running, my mileage was increased from 3 to 4 miles but I ran 4.5 or 5 miles because I did not see the mileage marker and passed it. I actually felt really great on this run and better than the previous 3 running days which is really promising. Hopefully that means my body is already adjusting and adapting to the change and will be able to keep up!

The temp varied from 46 degrees to 39 degrees. I have no need for wearing thermals at these temps. On 2 days, 3 layers on the top was too much and I had to stop to peel off a jacket. What worked best on the coldest day (Friday) was a pair of running tights with a thin moisture wicking long sleeve shirt under a fleece jacket accompanied by a running ball cap. This was the most comfortable ensemble at 39 degrees. The Salomon waterproof trail running shoes are working great but I will most likely need to change to a running shoe for pavement to use in the marathon.

Lunch has been light and mostly just snacks such as a V8 and cheese stick and maybe a yogurt. Breakfast has been cold cereal (sometimes with a banana) and a graham cracker slathered with fat free strawberry cream cheese.

For supplements I am trying hard to remember to take my vitamins (multi, C, Iron, and calcium). In the morning before I eat, I try to take 3 collagen +C supplements. I drink an oz of glucosamine joint juice with 6-7 oz of low cal fruit juice. Depending on how I feel the next day and if my hips are sore, I may take 2 "Move Free" tablets. On occasion I will add in a potassium supplement as needed (such as the day of or after my long run). Lastly, FRS (promoted by Lance Armstrong) makes a wonderful line of products that I am really pleased with. Normally I will have one or two sport chews before a run or workout. On the day of my long run, I tried the juice concentrate a half hour before my run and then a sport chew. I REALLY believe these work! Before training, there was one evening I did not have a chew before lifting and it was most worst workout! I was really tired and had to lift less and even do less reps!

I was able to maintain my weight routine with the running this week. I did not decrease the amount of any weights and even added 5 lbs. on a couple exercises. I realize that I will most likely not be able to continue this as the weekly mileage increases. I really hate to drop it all together for the 4 months leading up to the marathon. I REALLY need the constant weight training in order to have stability and be able to do some of the things I want to do. I think as the mileage increases, the amount of weight will need to decrease until after the event. I may eventually change to actual "toning" exercises to keep the muscles in practice than serious "strength training". This is something I will have to figure out as I go along.

When I trained to WALK the Seattle marathon in 2006, I did not do any regular weight training. At that time, I was working on building up my endurance again and started to run in little short spurts. I was unable to do any more strenuous/elevation hiking or diving yet. I was still using a walking stick to walk in many areas (the marathon helped me build up and eliminate using the stick).

Originally I had planned to take Katie on a run once and MAYBE twice a week. She has done very well though and seems to be adjusting nicely. I still am a little nervous that she will trip me as has happened in the past. We changed to a longer and lighter leash which really seems to help the whole tripping and yanking on the leash. Our last run was the best which was our 4th for the week and she was excited to go! I know however, that I will have to run by myself as the mileage increases because when we trained to hike 31.5 miles last year, the high mileage days and weeks became too much for her.

Today is supposed to be a 3 mile run day but we might go diving. I don't want to mix a strenuous training run and dive on the same day (such could contribute to decompression sickness). Missing one run day is not worth getting a major medical complication over. If I miss it today (Harley is off work today and it is his birthday), I will try to see if I can make it up on Wednesday. Doing so however, would cause me to run 3 days in a row without a rest day for recovery.

The plan is to run 4 miles on the second day this week but I may keep to the week 1 mileage as I am ahead of schedule in the training program (it is now 15 weeks pre-marathon and the training program is for 10 weeks). This gives me a little more time to adapt to regular running and also a rest week before the tower climb in March.

Until the next report, have a wonderful week! :o)

New Event/New Training

Yes. I am at it again. Training never stops for me as I have mentioned before. I and many of us with NF2 train to just function as normally as possible. It really helps keep me motivated by having a variety of events to accomplish with a cause attached.

I will again be racing to the top of the Columbia Tower on March 22nd as a fundraiser for the Leukemia and Lymphoma Society which I have been involved with since 2006. This will be my 3rd year and I hope to scale the skyscaper in 14 minutes. Last year my time was 14:16 and the year prior was just over 15 minutes.

Of course I have been mildly training for it since I finished my long distance hike in September. I thought I was going to have another brain surgery so I was concerned about keeping fit and being able to bounce back right away in time to do the tower again.

Fortunately, I did not need another surgery last fall. So I was able to just carry on (lifting 3 days a week, water aerobics once a week, 15 minutes on the stair climber once or twice a week, and a weekly run 30-50 minutes in length.)

I have pondered it for quite awhile and Sunday I finally made the decision to actually run a marathon now (a half marathon in Eugene, OR near my parents).

I still need to register (for both events) but I labeled yesterday as the official start of my 10 week half marathon training.

Am I scared? Heck yeah! LOL As I mentioned before, I really am not a "runner". Running has always been something moderate for me and a means to supplement training for something else or a small part of keeping in shape.

Running this distance will be a HUGE challenge for me...the greatest by far (more than walking a marathon or 31.5 miles). First of all, I have not really talked about it, but I get double vision within the first 10-15 minutes of running that STAYS with me the whole duration and there after! I found out in September that it is here to stay and something that I need to learn to deal with and compensate for. I do this by looking down at the ground about 3-5 feet in front of me most of the time. When I look ahead to the trail the double vision is worse and it is hard to calculate my footing and not get disoriented. I can only make quick glances to see where I am.

The second issue is that I am unable to run indoors on a treadmill. Therefore, all of my training runs must be done outside which proved to be a challenge at the end of December when we had lots of snow followed by lots of rain and flooding.

There were a couple weeks when it snowed that I just could not do my weekly run. One day it was just too icy and within 5 minutes I tripped over Katie's legs when we were trying to avoid another large patch of ice. After that, I determined it just was not worth getting injured and would wait out the couple-few weeks until the snow and ice were gone (afterall, I cut up my knee again).

The week before Christmas I did try running on the treadmill hanging on to the handle bars. Wow! It is just not made for that! After 10 minutes my shoulders and arms ached terribly from all the jarring! So I hopped off and rode the cybex machine instead.

Now the snow is gone and it is starting to dry up. My usual path on the Snoqualmie Valley trail is most likely flooded right now or muddy. Last I walked on Redmond Ridge, the trail through the woods had quite a few puddles. Fortunately there are some paved trails around for me to run on.

I never imagined I would ever run in a marathon. Yet, it just feels like it is the next step for me. This summer I was able to make it through a 10K. a 10K = 6.2 miles and is almost half of a half marathon. I have read over the past couple years of a technique where people run for a few miles and then walk a mile. The walking helps them recover and re-energize. In fact, people who have done this technique resulted in better running times than had they ran continuously the entire course.

So my strategy is to try this technique and run every other mile. That way I am doing what I know I can accomplish which is to run a 10K and I know I can certainly walk it. I am going to pursue the regular half marathon training and see how it goes for me. In any case, I will finish the half marathon somehow. I am committed to it.

I am going to try my best to journal my training here so keep checking in!

Here is the half marathon training schedule I found online:
The marathon is May 3rd so I am just a tad early into training which is good.

10-Week Half Marathon Training Schedule
Week Mon Tue Wed Thu Fri Sat Sun Total
1: 3 Rest 3 3 Rest 4 Rest 13
2: 3 Rest 4 3 Rest 5 Rest 15
3: 3 Rest 4 3 Rest 6 Rest 16
4: 3 Rest 5 3 Rest 8 Rest 19
5: 3 Rest 5 3 Rest 10 Rest 21
6: 4 Rest 5 4 Rest 11 Rest 24
7: 4 Rest 6 4 Rest 12 Rest 26
8: 4 Rest 5 4 Rest 9 Rest 22
9: 3 Rest 4 3 Rest 8 Rest 18
10: 3 Rest 3 Walk 2 Rest 13.1 Rest 21.1

Revisit of My Goals

When I came home from surgery in the fall of 2007, Harley and I talked about goals. I felt kind of corny but he wanted me to tell him and write down my goals. Although they started out kind of simple, my goals grew throughout the year.

Here are the 3 goals I wrote down and posted next to my computer that I wanted to achieve in 2008 (and yes, I accomplished them all and added to the list as the year progressed)

1. Improve handwriting and learn to write again.
2. Climb the Columbia Tower
3. Run a 10K

Within the last hour and after reading the newsletter by Mac Anderson, it reminded me to write down my new goals for 2009.

Here is the list I have written in blue ink posted next to my computer monitor which I see every morning and several times a day.

1. Lose 7 lbs.

2. Finish painting the entire main floor of the house. (I got a start with a trial run on 2 walls and I restored an area downstairs and made a pantry in 2008; so far since my balance began improving, I have taken on 3 painting projects in the house. The first was really a challenge because I had not built up enough strength yet for stability which makes painting really difficult.)

3. Climb the columbia tower and raise at least $100 for LLS (the requirement is $50 so I doubled it, last year there was no requirement and my sister and I raised about $1900).

4. Run a half marathon in May/raise $5000 for NF2 research (in May I decided to do a 31.5 mile hike to fundraise for NF2 research. My initial goal was $3800 which I raised to $5000 and reached over $5200).

5.Complete 20-30 dives for the year (scuba).

6. Wake up early and go to bed early in order to maintain a consistent sleeping schedule.

7. Blog every week (you may have noticed I let it slide over the last couple months). The key is to be consistent.

8. Help organize and clean the garage (a task we have put off for 5 years).

9. Finish putting together the glass and wood curio cabinet which we have been carting around for years and has been collecting dust in storage.

#10 I need to do some more thinking about. I know there are other things I wanted to accomplish this year but I have forgotten at the moment.

See what happens when you don't write them down!

Be A Serious Goal Setter

I recieved a great newsletter from Mac Anderson this week which was just in time. I do not really believe in New Year's Resolutions. Rather I believe in goals.
What's the difference?

New Year's Resolutions for many people are just sort of a fad...like a fad diet. It does not last. Sure. I am certain people approach their New Year's Resolutions with whole hearted enthusiasm and drive. But all too often the spirit and energy to acheive the resolutions fades or they get forgotton.

If you do make "New Year's Resolutions" modify your thinking of them as "goals" and write them down some place where you can see them everyday and be reminded of what you set out to achieve. Then when you see them often, you will think about them and ask yourself how close you are to obtaining it and if you are doing what you need to in order to pursue that goal.

Below is a wonderful discussion by Mac Anderson of Simple Truths on goal setting from his new book "The Power of Discipline":

Why are some people more successful than others? Why do some people live happier lives and accomplish more in the same number of years than the great majority?

If I had to pick one answer to these questions, I wouldn't hesitate ... my answer would be self discipline.
Albert Gray said it best, "The common denominator of success - the secret of success of every person who has been successful - lies in the fact that they formed the habit of doing things that failures don't like to do."
Gray "nailed" it!
Why?

Because self discipline affects so many facets of your life. It affects your ability to reach your goals; it affects your personal health, your time management, your ability to manage your finances and even your character.

Brian Tracy is one of America's leading authorities on the development of human potential. He speaks to over 250,000 people a year, and is also a best-selling author who has written 25 books.
I'm honored that Brian has written a book for Simple Truths titled: The Power of Discipline...7 Ways It Can Change Your Life.
Take a quick look at the table of contents...

Introduction 5
Self Discipline and Goals 8
Self Discipline and Character 26
Self Discipline and Time Management 40
Self Discipline and Personal Health 50
Self Discipline and Money 64
Self Discipline and Courage 76
Self Discipline and Responsibility 92

Today, I'd like to share a brief excerpt from Brian's chapter on Self Discipline and Goals. Enjoy!
An excerpt from The Power of Discipline
by Brian Tracy

Your ability to discipline yourself to set clear goals, and then to work toward them everyday, will do more to guarantee your success than any other single factor.

You've heard it said that, "You can't hit a target you can't see."
"If you don't know where you're going, any road will get you there."

Wayne Gretsky said, "You miss every shot you don't take."

It seems that only 3% of adults have written goals and plans, and they earn more than the other 97% put together.
Why is this? The simplest answer is that, if you have a clear goal and a plan to achieve it, your focus is fixed on a set course of action. Instead of becoming sidetracked by distractions and diversions, your time is focused on a straight line from start to finish. This is why people with goals accomplish so much more than people without them.

The tragedy is that everyone thinks they already have goals. But what they really have are hopes and wishes.
A wish has been defined as a "goal with no energy behind it." Hope is not a strategy.
Goals that are not written down and developed into plans are like bullets without powder in the cartridge. People with unwritten goals go through life shooting blanks. Because they think they already have goals, they never engage in the hard, disciplined effort of goal setting, the master skill of success.

USA Today reported on a study a couple of years ago. First, researchers selected people who made New Year's resolutions. Then they divided these people into two categories: those who made New Year's resolutions and wrote them down, and those who made New Year's resolutions, but neglected to write them down.

Twelve months later, they followed up on the respondents in this study. What they found was astonishing! Of the people who made New Year's resolutions but neglected to write them down, only 4% actually followed through on their resolutions.

However, among the group that took a few minutes to record their New Year's resolutions, 44% followed through on them. This difference of more than 1100% proves the simple act of crystallizing resolutions or goals on paper increases likelihood of success.

In my experience of working with several million people over the past twenty-five years, the disciplined act of setting goals, making plans for their accomplishments, and then working on them daily, increases the likelihood of achieving your goals by ten times, or 1000%.

This does not mean that goal setting guarantees success, only that it increases the probabilities of success by ten times. These are very good odds to have working in your favor.
Click here for more information on The Power of Discipline.

Epiphany About Life

"Your life is an occasion Mahoney." Mr. Magorium then cups his young apprentice's face gently in his hands, "Rise to it!"

- Dustin Hoffman as Mr. Magorium in Mr. Magorium's Wonder Emporium


Whoever you are, where ever you are, and whatever you do, life is not to be feared but lived! As Mr. Magorium said, "It is an occasion". Now go on and savor it, pursue it, and make the very best possible occasion you can muster! After all, "anything is possible". :o)

Want to Recycle Old Cards?

Feel good cleaning out while helping a cause that will only cost you to mail a box of used cards.

This does not directly deal with NF2 but applies to everyone. However, last year I read an article through an MS society newsletter about how important it is for people with disorders of the brain to eliminate clutter in order to have efficiently functioning lives. So this definitely applies to people with NF2 also.

I am a HUGE packrat and save WAY too much! I have saved all of my cards for years and have had a difficult time letting them go. Some are just so pretty or too cute that I cannot bring myself to throw them away. As a result, I have an overflowing, heaping pile of cards people have given me crammed in my cabinet.

What good are they doing in there? LOL Like I ever look at them until I find it is time to try organizing and doing some spring cleaning. Still, I just cannot bring myself to throw them out. I don't really have the time or patience to make new cards of them either.

So what is the solution of not wasting them and feeling good about offloading them?

DONATE THEM!


That's right! You understood me correctly!

St. Jude Hospital for sick children has a wonderful program where the kids make new cards out of them to sell as part of the fundraising efforts for the hospital. Isn't that fabulous?

Here is the info and website:

BETTER HURRY BECAUSE THEY ARE ONLY COLLECTING THEM UNTIL FEBRUARY 28TH!


We are accepting used, all-occasion greeting cards from November 15, 2008 thru February 28, 2009. You can mail your donations to:

St. Jude's Ranch for Children
Card Recycling Program
100 St. Jude's Street
Boulder City, NV 89005


To learn more about St. Jude's Ranch and their card recycling program, please visit the website: http://www.stjudesranch.org/help_card.php

Brain Tumor Survivors and our Caretakers Taking a Time Out

Pictured to the right: Rhianon and I "NF2 babes"

Pictured to the left: Karen and Sam Stueland, Harley and I, Rhianon England

Oops! Back when I tried to upload a photo for this post, I had a problem with my computer locking up. This was supposed to be a draft until I could fix it and I did not realize it posted on my blog.

Last month was an extremely busy month for us and we even had a snowstorm and a foot of snow at the house during Christmas! With the New Year and things settling down now, I am back and my blog has not died out.

The picture (which I am finally now posting) is from our Halloween Party this year which we used to hold annually but have not for the past 3 years due to travel and of course I was recovering from surgery in 2007 and certainly did not have the energy to throw a party.

I was feeling so good within this last year and we were elated that I did not need to get surgery again this fall, that we felt like finally throwing our halloween party again to celebrate. It is always fun and we like to decorate the cabin really cool.

I am pictured here with 2 other brain tumor survivor friends and our caretakers (my husband Harley and Sam's wife and my good friend Karen who incidentally is a sign language teacher at the Hearing, Speech, and Deafness Center in Seattle).

Rhianon and I are afflicted with NF2 whereas Sam had something similar (Acoustic Neuroma). With Acoustic Neuroma, one also has a tumor on the auditory nerve. However, fortunately for Acoustic Neuroma patients, they only have one. Tumors in acoustic neuroma patients are easier to remove and treat unlike those of us with NF2 who have tumors on BOTH acoustic nerves as well as many other tumors in the brain and spine.

For Sam, his battle with his tumor was finished years ago when he had surgery to remove it. It has not and will not grow back. For Rhianon and I, only part of our tumors were removed and it is very common for them to grow again. In addition, there are other tumors that we will watch with our doctors throughout the rest of our lives and try to enjoy our lives as much as we can before surgery is needed again.

All of us have been left with many issues to deal with as the result of damage inflicted by the tumors. Our caretakers have a tremendous amount on their plate in dealing with our disorders. We are truely grateful for them! It is important for all of us once in awhile to have fun and take a break from all this brain tumor stuff and the things that go along with it.

This Saturday, I had the opportunity to meet Frank, Rhianon's caretaker, who goes to all her doctor visits and appointments with her.

Happy Belated Havest Time

Above are a few photos from when my sister and I visited the corn maze and farm here in Redmond. To see a slideshow of the rest of adventure go here: http://picasaweb.google.com/RebeccaDufek/HarvestTime2008#slideshow


This year the corn maze was nice and lots of fun for me as my balance has improved greatly! Last time we went to a corn maze together was in Bosie, Idaho in Sept 2005 when my balance was still very poor. I had difficulty walking on the uneven ground and needed to use a hiking staff. The fun and games all ended when I got poked in the eye with corn and could not see well. No eye poking on this trip! The maze had a question game about agriculture. Guess the right answer and you went the correct way! Guess wrong and you hit a dead end!

Yeah, we did hit some deadends but made it all the way through to our prize of a mini pumpkin at the end! :o)

Time to Eat Frogs Again

This morning I recieved a newsletter from Mac Anderson about their inspirational movie to go with the book "Eat That Frog" by best selling author Brian Tracy. It was perfect as I have been procrastinating many things I need to get done. The time gap of this procrastination seems to be growing while the holidays are fast approaching!

If you need a swift kick in the pants, some guidance to get back on track, or more structure to your life in order to become more efficient, check out this new short inspirational video.

http://www.eatthatfrogmovie.com/

If I happen to disappear for a little while, I am busy eating frogs! ;+)

To take a virtual tour of the book "Eat That Frog" offered by Simple Truths, click on the following link:

What Not To Do Before a Run......

fill your tank at an Indian buffet just a couple hours beforehand!

Also, don't pig out on hummus days before or do kickboard laps in the pool! LOL

My weekly runs have been going pretty great averaging over 40 minutes a run. I even ran the week of our diving incident. I skipped water aerobics monday, my run on tuesday, and any gym activity until thursday to rest up and ensure I did not encourage the onset of DCS (decompression sickness) in myself. As a result, I crammed all of my weight lifting into 3 consecutive days at the end of the week, took sunday off, then returned to the gym on monday for water aerobics, kickboard and back stroke laps in the pool, and an upper body weight routine. So when it came time to run on Thursday I was a little fatigued.

I had planned to meet up with my friend Skip for lunch that day. I was not that hungry in the morning and knew we were going to the indian buffet. So to build up a hearty hunger for a buffet, I skipped breakfast. I knew it was run day and questioned my plan. I never ran after eating at a buffet before. I figured after a couple hours it would be well digested and ok so I went for it!

Big mistake! Not only did my legs feel like lead from the workout the previous day and not ample recovery time, but I wa running with what felt like a humungous rock in my gut! It was a challenging run indeed and several times I wanted to just quit. However, I had a dental appointment and other plans the rest of the week which was going to make it difficult to schedule in the run on a later day. Therefore, I toughed it out so I could just get it done.

The combination of curry and spices churned in my stomach with each step. It took sheer will and mental focus to continue on as carrying the rock in my stomach was just unbearable! I had already stopped to vomet a small amount twice and had to control the urge for a 3rd round until I completed the run.

It was a test of mental wit to pass the time. I had to get my thoughts off of how uncomfortable and tired I felt and onto something more motivating.......something to make me hang in there. The night in ICU after my surgery last fall came to mind. After 6 or so hours of surgery, I had awoke to my body convulsing from violent vometing, shivering, and my head ringing loudly like a police siren when in reality I cannot hear anything. I remember briefly opening my eyes and seeing Harley and our friend KC. I am sure seeing me in that state was a horrifying experience for them. Then I awoke hours later alone in the middle of the night not feeling a whole lot better. I could not sleep at all. Time appeared to stand still. I could not wait for 8 am to arrive when visiting hours opened and I knew I would see Harley and my family again.

While running, I harnessed that feeling I experienced in ICU and the will I had to hang in there. Although my run was exhausting, it paled in comparison as to what I went through that night. Thinking about that situation made the grueling run much easier to tolerate and put it into perspective...a few minutes of discomfort as opposed to hours filled with uncertainty.

Needless to say, I will not be eating at a buffet again before I go for a run! That was so terrible that thoughts of thanksgiving dinner were incredibly unappealing!

Bananas and Muscle Wasting

One of the issues I have found important with living with NF2 is proper nutrition. There are many foods I have learned to like simply because I need them as part of my dietary intake (V8 juice, raisens, oatmeal, celery, nuts, bananas, etc.).

I do not enjoy taking supplements so as much as possible, I try to get certain nutrients through food intake (hence the V8, raisens, dried apricots, and bananas as they are foods rich in potassium. For 3 years I took a medication for my vision that depleted my body of potassium leaving me with painful leg cramp attacks. Even with potassium rich foods, I did get to the point where I had to take a supplement of potassium gluconate in addition to dietary intake.)

But about the interesting article I found on the banana......

Diseases and disorders such as NF2 are known for a process of muscle wasting quite easily and if you don't use it, you lose it. It is one of the reasons I lift weights 3 times a week. But if you are not a weight lifter, there is still hope....in the banana which has been found to combat muscle wasting.

From the EatSmart column in USA Weekly

Want More Muscle? East a banana.
by Jean Caroer

You may think eating lots of protein gives you more muscle mass - but you should try potassium packed fruits and vegetables instead, says a new USDA study at Tufts University of older Americans.

Typically, muscle mass declines after age 50. But seniors who ate lot of high-potassium foods were apt to have 3.6 pounds of lean tissue mass than those who had half as much potassium.

HERE'S THE SCIENCE: Researchers believe potassium counters the effects of foods such as meat and cereal grains, that create "acidic residues" in the body, promoting muscle wasting. Vegetables and fruits, including citrus, paradoxically become alkaline in the body helping neutralize the acidity.

GOOD SOURCES: Potassium is high in bananas, dried apricots, cantalope, potatoes, sweet potatoes, winter squash, pumpkin, legumes, avocado, orange juice, and tomato products.

Freedom and Perseverence

A friend sent me this heart warming story of strength and the will to live that I thought I would share here:

"Not many people get a picture of this proud bird snuggled up next to them.

Freedom and I have been together 10 years this summer. She came in as a baby in 1998 with two broken wings. Her left wing doesn't
open all the way even after surgery, it was broken in 4 places. She's my baby.

When Freedom came in she could not stand and both wings were broken. She was emaciated and covered in lice. We made the decision to give her a chance at life, so I took her to the vets office. From then on, I was always around her. We had her in a huge dog carrier with the top off, and it was loaded up with shredded newspaper for her to lay in. I used to sit and talk to her, urging her to live, to fight; and she would lay there looking at me with those big brown eyes. We also had to tube feed her for weeks.

This went on for 4-6 weeks, and by then she still couldn't stand. It got to the point where the decision was made to euthanize her if she couldn't stand in a week. You know you don't want to cross that line between torture and rehab, and it looked like death was winning. She was going to be put down that Friday, and I was supposed to come in on that Thursday afternoon. I didn't want to go to the center that Thursday, because I couldn't bear the thought of her being euthanized; but I went anyway, and when I walked in everyone was grinning from ear to ear. I went immediately back to her cage; and there she was, standing on her own, a big beautiful eagle.

She was ready to live.

I was just about in tears by then. That was a very good day.

We knew she could never fly, so the director asked me to glove train her. I got her used to the glove, and then to jesses, and we started doing education programs for schools in western Washington. We wound up in the newspapers, radio (believe it or not) and some TV. Miracle Pets even did a show about us.

In the spring of 2000, I was diagnosed with non-hodgkins lymphoma. I had stage 3, which is not good (one major organ plus everywhere), so I wound up doing 8 months of chemo. Lost the hair - the whole bit. I missed a lot of work. When I felt good enough, I would go to Sarvey and take Freedom out for walks. Freedom would also come to me in my dreams and help me fight the cancer. This happened time and time again.

Fast forward to November 2000, the day after Thanksgiving, I went in for my last checkup. I was told that if the cancer was not all gone after 8 rounds of chemo, then my last option was a stem cell transplant. Anyway, they did the tests; and I had to come back Monday for the results. I went in Monday, and I was told that all the cancer was gone.

So the first thing I did was get up to Sarvey and take the big girl out for a walk. It was misty and cold. I went to her flight and jessed her up, and we went out front to the top of the hill. I hadn't said a word to Freedom, but somehow she knew. She looked at me and wrapped both her wings around me to where I could feel them pressing in on my back (I was engulfed in eagle wings), and she touched my nose with her beak and stared into my eyes, and we just stood there like that for I don't know how long. That was a magic moment. We have been soul mates ever since she came in. This is a very special bird.

On a side note: I have had people who were sick come up to us when we are out, and Freedom has some kind of hold on them. I once had a guy who was terminal come up to us and I let him hold her. His knees just about buckled and he swore he could feel her power coarse through his body. I have so many stories like that.
I never forget the honor I have of being so close to such a magnificent spirit as Freedom.
Hope you enjoy this."

Jeff Guidry

What is Compassion?

I am normally a daily affirmation reader and I have been going through affirmation books since 2005. My first affirmation book was given to me by a mentor in college when I was 19 years old. Within the past few years, my mom has kept me supplied with a pretty regular supply of affirmation reading.

Me = great quotes, affirmations, inspirational stories, and nature. Those are some of the things I REALLY enjoy and what drives me or keeps me going.

I stumbled upon an affirmation from a couple days ago which is just too good to keep to myself. It is interesting because I have been pondering lately how to define compassion. Voila! Charles R. Swindoll sums it up best in his book "Bedside Blessings".

"Compassion usually calls for a willingness to humbly spend oneself in obscurity on behalf of unknowns.....Truly compassionate people are often hard to understand. They take risks most people would never take. They give away what most people would cling to. They reach out and touch when most would hold back with folded arms. Their caring brings them up close where they feel the other person's pain and do whatever is necessary to demonstrate true concern."

I am very fortunate to have some true friends and very compassionate people in my life. I only hope that I can strive to also become a compassionate being and pay it forward.

A Window Into My Soul

Photo by Harley Dufek of me overlooking Puget Sound at Discovery Park in Seattle, WA last Sunday. The Olympic Mountains are in the backdrop.

Nature is one of the most precious things to me. It perfectly describes who I am and echos my personality. Simple Truths has created a new inspirational slideshow which captures the beauty of life which I am so passionate about. Click on the link to enjoy it too! It is sure to help you relax, remember what is important, and to give an uplift to your day!

From Mac Anderson of Simple Truths:

Ralph Waldo Emerson said:

"Never lose an opportunity of seeing anything that is beautiful. Welcome it in every face, in every sky, in every flower."

http://www.naturesinspirationmovie.com/

Interesting Find

I was going through and doing some pruning today. You would not believe the stuff I save! Anyhow, I am going through old greeting cards I have kept and have decided to cut off the fronts to recycle and send to a program where children at St. Jude's make new cards out of them (thanks to my pal Jen, the recycling queen, for the tip).

While I was doing this pruning I ran across some quotes I kept from a tear off daily calendar. I LOVE quotes and I LOVE using them. I want to send it to my cousin who is undergoing a challenging transformation. Yet, I still want to keep the quote somewhere so I will post it here because I think it is a good one and a quote very fitting for those coping with NF2, medical illness, or any other sort of life challenge that tests our spirit. I hope you find it meaningful and useful in your life too!

"When you get into a tight place and everything goes against you, till it seems you could not hold on a minute longer, never give up then, for that is just the place and time that the tide will turn."
- Harriet Beecher Stowe

BENT

What is "bent", "the bends", "dci", decompression sickenss?

http://www.diversalertnetwork.org/medical/articles/article.asp?articleid=65


I have some disturbing news. Sunday we went diving again and had a fantastic first dive which was my 6th since getting back in the water. However, we chose not to quit while we were ahead and went on a second dive did not go so smoothly.

We took Mike's zodiac over to Vashon Island to dive at KVI tower which is one of my favorite dive places up here. The visibility was great and when I first dropped down, I found a sandy patch on the bottom where I could experiment with my bouyancy. I am still having problems with bouyancy and getting my weighting right. I am on the heavy (negatively bouyant) side but then I am having major bouyancy fluctuations in my suit because it is too big. After adding and dumping air out of my BCD for a few minutes, I finally got to a point where it felt pretty good and I could go enjoy the dive which I did. I would have to say that it was my best dive yet out of the 6! We saw lots of life (dirona nudibranchs, glassy tunicates, sea cucumbers, sea stars, big plumose anenomes. sponges, ling cod, various fish, crab, and a large octopus sleeping in its den!)

On the way up I had a little bit of a problem with the air vcnting out of the suit. I had to hold on to the anchor line but because there was some slack in the line, it just kept going up instead of keeping me down for a safety stop at 15 feet. The dive was to a maximum of 77 feet for 33 minutes dive time under the water.

When we got out, Harley and Mike inquired if I wanted to do another dive. I said sure seeing it was still light out. We left the KVI tower dive sight and sped across Puget Sound to Redondo on the mainland where we put the boat in. By the time we got there, the daylight was starting to fade a little and Harley had to jump out to go use the bathroom. When he returned, Mike had to go (I didn't because I wear Depends when diving). When he returned, the light was starting to fade more which concerned me a little but I was not anticipating it to be a long dive. I thought we would surface before dark.

I was the first one into the water as Harley helps me get all setup and then I wait for Mike and Harley. I was cold while waiting (I had a minor leak and got a little damp but did not realize until later). So while I waited for them to get their gear on and enter the water, I started doing jumping jacks in the water and running in place to warm up. I looked down at the anchor line and noticed it disappear within just a couple feet. The visibility was not great at the surface which made me a little apprehensive. Meanwhile the light continued to fade out as the sun began to set. I thought about totally aborting the dive and letting Mike and Harley go while I waited in the boat. But that would only kill more time and delay the dive. Plus, I would probably get cold waiting. Rather than going through the hassle of having them take off gear and get me out of the water, I chose to just brave it out.

When they rolled into the water, I asked Harley what was the plan. He signed that we were going to snorkel over to the dock and drop down. "Great!", I thought. I would have a reference for going down in such low visibility and darkness. I figured it was pretty shallow under the dock and antcipated exploring the plethora of life that is normally found growing on the dock pilings. It seemed like a plan that I would be okay with. In the worst case scenario, I could grab the piling if I was having a bouyancy problem again while surfacing. (about the visibility too....it is common for it to be stirred up at the top but clear once you drop down which is did. Therefore, I used all these thoughts to comfort myself and brave the low light/night dive which I had really planned to exclude from my return to diving.)

When we dropped down I had to stay within a foot of the piling for visual reference so I would not get disoriented. Once at the bottom, we did not go under the dock but away from it which was not what I had schemed out in my mind. "Ok", I thought. "Everything will be fine." So I followed and went along for the ride. At 51 feet we came upon a small stack of tires which had some cool life growing on it and surrounding it. At one point near this tire structure, my mask began to flood with water and became a quarter to one half of the way full. "Alright, just don't panic. It is no big deal. You know how to clear it out." I was kneeling on the ground and next to the tires. However, when I first tried to clear the mask, my technique did not work. Further, I started to swallow the water that was going up my nose. I was not breathing in, but when I tilted my head back to clear the mask, water entered my nasal passages when I stopped blowing out! This has happened before since the onset of facial paralysis while eating soup and drinking water since. So it was not the first time I experienced this sort of choking phenomena. At first it set me into a little panic. If I cannot see I am sort of screwed so I had to clear the mask. But when I tilted my head up to clear the mask, I started choking on water. It is times like these that your ability to survive hinges on keeping a cool head and having faith and confidence in yourself that you can solve the problem. So that is just what I did and kept trying until it was cleared. Then I gave myself a few moments to relax before continuing on. When the situation first happened I got Harley's attention and was very uncomfortable. I wanted to go up but then I solved the problem and all was fine again. I did not want to surface from 51 feet in the fading light with a leaking masking and swallowing water. That just would not have been good and may have caused me to freak out (too many factors to deal with at once).

We continued down and came upon an old boat with an octopus in its den underneath. It was cool but I got tired of trying to shine my light that only extended so far into the crevase and trying to maintain a neutrally bouyant to position to see it. Thus, I looked around the boat for a little bit. Did I also mention that the bouyancy was especially challenging for me? I spent a lot of the time landing on my knees which was frustrating. My trim is off and my legs seem to sink lower than the upper half of my body which makes swimming efficiently underwater bothersome.

I started with about 2450 PSI (pounds per square inch) of air in a steel compact 80 tank. I noted when I got down to 1200 or 1150 PSI which was less than half my air. According to my dive plan , half of the amount of air means it is time to head back and ascend to a shallower depth. I tapped Harley and thought he saw my guage and air. Yet, he remained fixated on the octopus while Mike was a few feet deeper taking pictures. By now it was pretty dark and if the light from either buddy shined in my eyes it was greatly disorienting. I chose to just stay next to the sunken boat and octopus to wait a few more moments. The boat was small so I looked within the structure a little bit.

Remember that I was having bouyancy problems so I did not really want to venture around too much. Between handling the light in one hand and alternating between the inflator hose for my bouyancy and guage telling me my air and depth in the other, and every so often dropping my light to fiddle with the inflator hose with both hands (because I have discovered my hand is a little weak and sometimes I am not fully pressing the inflator button) I was fumbling around. This was not good as it became more dark under the water and my air was becoming less at depth (57 feet). I did NOT want to run out of air at that depth, try to ascend, and then be left with having to manually inflate my BCD in the dark which is a problem with my facial paralysis. Therefore, I wanted to turn back and ascend to shallower depth NOW!

At 1050 PSI I tapped Harley on the head and waved my light to get his attention off the dang octopus. I showed him my air and tried to sign in the darkness that I wanted to go back. He pointed in the direction of a rope along the bottom which I sort of remembered. I went up to the tires which was at 51 feet and then next thing you know I was at 63 feet in the direction Harley pointed. It was too dark for me to tell which direction went to a shallower depth. I looked at my guage and I was now down to 950 at 63 feet with no idea which direction to go to get back! I was lost.

Now I love Harley to tears but on land he is not the most efficient of navigators. If I am not paying attention and playing the "Lola - gps", he most often goes the wrong way. At 63 feet and 950 pounds of air I did not want to go the wrong way! I really did not want to ascend within the water column but I felt at that point we had no other choice. My panic level was starting to build and I wanted out of the situation before it became worse. I signalled to him to go up. I know that was confusing because he knows I am not comfortable doing that and prefer to follow the slope to ascend to a shallower depth. Frustrated, I signed a couple times "PLEASE help me go up!" I needed help because first of all, it is hard for me to ascend like that without some kind of reference point. Further, it was now dark and even more difficult for me to find my reference and go the right way.

In order to do ascend together and not loose him, I had to grasp his shoulder strap with my right hand. That means I had to drop my light hanging from my side. In the other hand, I had to manipulate the inflator hose. I did not have a free hand to monitor my guage for air, depth, and ascent rate. I had to look up through the darkness to try to see my bubbles. I had no idea how much air I was at so I grabbed the regulator on his pony bottle a started breathing off of it to ensure I would have enough air.

As a result of all this, the air in my large drysuit did not vent out quickly enough and we made a fast ascent. Harley was not too happy and understandably so. On the surface we snorkled over to the dock and dropped back down to the bottom at 15-17 feet for our 3-5 minute safety stop. It was shallower because the tide had gone out while we were underwater.

Immediately upon getting back in the boat Harley said he was "BENT" which is decompression sickness from excess nitrogen bubbles that form in the blood. He was starting to feel some affects already. He breathed off of Mike's O2 bottle for quite a long time after the dive and back at the condo. By monday morning he was feeling shifting of an arthritic type of pain all over his body. He went to work that afternoon and by 6 pm (24 hours after the dive) he was not feeling any better so we called DAN (Diver's Alert Network) and went to the hyperbaric chamber at Virginia Mason in Seattle.

He was in the chamber all night (8 hours) for a depth of 60 feet. He did not like it in there and said he felt very weird and achy. He slept all day yesterday and began to feel better yesterday evening and was well enough to go to work later this morning.

68 hours later I am feeling pretty good. I did not seem to get bent so I did not go in the chamber with Harley. At 12:30 or 1 am this morning, the pinky on my right hand became numb and thing finger has swollen for some reason. We have no idea what it is from and if it is in fact an NF2 related thing. We were told that after 24 hours if I did not feel anything, I was pretty lucky and unaffected. I did not feel anything at 48 hours either.

So what now?

Harley is to abstain from diving for a month and needs a checkup with a diving physician before he returns, he is to rest and not engage in strenuous activity for a week, and drink plenty of fluids (none containing alcohol). The decompression sickness could recoccur so he is to take it easy.

How about me?

After the dive, stenuous activity can encourage the bends. Therefore, I did not go to the gym at all yet and will not do my run this week which normally is on tuesday. Yesterday I also rested with Harley and took a long nap as I did not get consistent or enough sleep while at the hospital.

I asked Harley if he thought it would be okay if I go lift weights today but he was not too thrilled with the idea and told me to just take it easy which is a hard thing for me to do.

The situation is not sitting well with me and I am having a hard time. It bothers me to have caused Harley pain, to go to the hospital, to miss work, and to miss his 3 workouts for the week. I did not like seeing him in a hospital gown on a gurney and hooked up to oxygen and a monitor. I have always been on the other side of the fence and have been the one in the hospital or sick. It is difficult to be on the other side and must have been awful for Harley and my family to see me like that (especially for Harley and our friend KC when I woke up from surgery vometing, convulsing, and yelling; and when my sister heard me yelling in the background when the nurse had called them in the lobby).

Alright....now down to the nuts and bolts.....

How could this have been avoided and what is to learn?

Well there is a GREAT deal we have learned. First things first, I should not have engaged in a second dive in low light conditions before I was ready. I should have called it but instead of being assertive, I was passive and went for the ride. One would not write a book without first learning grammar and how to spell. We skipped steps and you cannot skip steps (especially when your life is at stake). The second thing MAJOR thing is lack of communication. We did not have a good dive plan. It was not clearly discussed (or at least relayed to me) exactly what we were doing, where we were going, what maximum depth we were going to, and at how many PSI we were going to turn back and head to a shallower depth. Had all that information been clearly understood, we would not have encountered the problem.

So lots of things to think about over the next month.

Pruning Your Life

Before I recieved an email from Mac Anderson about simplifying your life, I had already decided that it was about time to do that this month. Time to weed out what I don't want and do not use anymore. Everything is getting way too cluttered and I do not have enough space so that makes life for me hard to manage.

Ironically after my surgery last year, I got a newsletter from the MS society with a fantastic article about why people with MS and other illnesses and disorders of the brain need to simplify things. I for one, have had challenges to my short term memory and get very forgetful so if there are too many things crammed in a closet or scattered around, remembering what I have or where I put things becomes too difficult.

Over the past couple weeks this forgetfulness has been weaving its way back into my life. It is time to go back to making lists of what I need and what I have to do and to get rid of the clutter so that I can think properly and be efficient. When things are too disorganized, it becomes difficult to think clearly and I waste lots of time trying to figure out what has to be done.

Funny thing is that Harley and I were just arguing about this over the weekend. He was saying that "less is more" regarding our decor. I have a packrat habit and like to save everything and put too many things on a table or shelf which to him appears messy. LOL I did not feel like arguing about it so before our party I went to town and to the gym. When I returned, he had rearranged things and took some things out and did a fantastic job! I was so impressed! I wish I had that skill. So this was a good lesson in experiencing "less is more" to get me on the track that I desire to be. The focus is to strive to make things better so that I can be the best that I can be and use my full potential.

Here is what Mac wrote me about the new gift book titled "Finding Joy - Simple Secrets to a Happy Life" that he offers.

Inspriational Video about finding joy:

http://www.simpletruths.tv/movies.php?movie=FJOY

"One of the conclusions I've reached as I've grown older and, I hope, wiser is that...less is usually more. In other words, when given the opportunity to simplify your life...take it.

I compare it to pruning a tree. By removing the excess branches the tree has more energy to bear beautiful blossoms and healthy fruit. Your life is no different. When you continually prune the areas not bearing fruit, you will be able to focus your energy on what matters most.

That's what Finding Joy is all about...reminding us to uncomplicate our lives and focus on what matters most. The subtitle of this beautiful gift books says it all...Simple Secrets to a Happy Life!

Also, since its release 3 months ago, our 3 minute inspirational movie has been watched by over 5 million people around the world. The music, the photography and the quotes will take your breath away!"

Live with Passion,
Mac Anderson
Founder, Simple Truths

Monsters in the House

Michelle and "Frank"

Spooktacular Decor

Our decor for our party theme "The Creepy Cabin Crawling with Creatures"

Happy Halloween!

the pumpkins my sister and I carved last friday
Mine is the winking one and hers is the space needle lit up below.
Have fun this evening! :o)

Diverbeck Returns!

a view of me under the water

what it looks like from down below (that is me on the surface)

me giving the deaf applaud (click on the photo to see Mt. Rainer in the background)

More photos of me by Mike Fitz.