Welcome to my journey with Neurofibromatosis type 2, known as NF2, a genetic mutation which causes numerous tumors to grow within my brain and spine. Since 2004, I have undergone radiosurgery and 3 brain surgeries for 7 brain tumors. Life with NF2 is definitely a test of faith and a challenge to keep positive. Join me on my harrowing adventure to keep active and live life to the fullest!
Sunday, April 18, 2010
I get by with a little help from my friends ~
Team Captain Cindy Rulon of "Team Madison" pictured with her two children. Madison, the girl on the left is the team honoree afflicted by NF1.
I must confess that I am TOTALLY not a morning workout person and most definitely not an early runner except to do an event. I generally procrastinate the run all day and typically get out an hour to a half hour before dark. But team captain Cindy Rulon on the NF endurance team arranged the first team run for Saturday morning IN the town I live outside of. So I really did not have a good excuse to NOT go! Rather than a hindrance, I think the sharp spastic muscle cramp in my calf at 7:20 yesterday morning was God's way of ensuring I did not sleep through the alarm again!
Reminiscing back to my team in training days in 2006, I was missing the "team" spririt and motivation which accompanies being part of a group working towards a common goal. With the exception of my dogs, I have been running on my own for quite some time now. The will to run was starting to peter out on me this week so something scheduled involving other people is exactly the strucure I needed.
Unfortunately nobody else turned up but this ended up being a bonus for me as the team captain ran along side me the entire way! It was a especially unique to sort of focused attention because she is a full marathoner who I know has a much faster running pace. But kindly she ran along side and encouraged me the entire way by giving me a thumbs up at each mile.
Although it took some adjustment to learn to run with someone and was a little distracting, it sure was nice to have someone at my side cheering me on and supporting me the whole way. Being a Saturday morning on a popular trail in town, there were LOTS of other runners. There were also LOTS of people passing me which was discouraging. But with Cindy next to me the whole way, the feelings of discouragement were momentary as her presence kept me focused on the goal....3 miles, 3.5 miles, 4 miles, 4.5 miles, and finishing at 5.
I could have went for 6 as the training schedule I am on called for in week 3. However, I started the 10 week training 2 weeks early anticipating any need for injury, illness, or cutting back to recover. My training runs this week were very difficult/miserable and my body so fatigued. To start out I had no idea how it was going to go and just had it in mind to finish at least 3. As we ran along, I chose to go a little further. When I reached 5 I was satisfied to not overdo it in hopes that I would be recovered for a good week of training runs in the days ahead.
We ran 3 miles out from Marymoor Park which gave us a nice 1 mile cool down on the route back. Aside from allowing my body a good recovery walk, it gave Cindy and I some time to get to know each other (another bonus of being able to do a training workout with the team captain). Of course I am deaf and unfortunately conversations out in the elements are not exactly a 2 way street. Therefore, I ended up doing all of the talking and had the opportunity to share my NF story of being afflicted with NF2 (Cindy's daughter Madison has been diagnosed at a very young age with the other form of the disorder known as NF1).
It was a great way to end a tough week/road block in my training. A third added bonus is that Cindy reminded me that it was still morning and that I could rest, relax, or do whatever I want for the rest of the day! What a terrific weight to have off my chest and how freeing!
Thanks Cindy for the run and your encouragement! It was exactly the shot of motivation and inspiration I needed this week! :D
Friday, April 16, 2010
My Weakness
So yeah.....so much for my South Beach success and my dream of 17% body fat composition - the starting range of an athlete! LOL Two months later and I regained the 10 lbs I lost. So I need to start over. I confess after Valentine's day I went nuts! There were all the post Valentine's day chocolates and then the stores stocked the shelves with the Easter surplus. I took all of our easter candy and put it into a big tin and used a step ladder to stash it away in the far upper recesses of the bedroom closet. I have wishful thinking/hopes that maybe my terrible short term memory will forget about it.
So now I am back to square one. I started abstaining from candy and processed sugars Monday but then I had some glazed pecans I bought Wednesday and some M&Ms and a recess egg and bunny today when I pulled out the tin to empty more AFTER easter stock.
This time due to the nutritional demands of my training, I will not be cutting out carbs completely. I am suffering from fatigue which we figure is a side effect of my post NIH trip/Big Climb illness. Now that I am in full swing of the half marathon training and hiking weekly, I need to consume complex carbs for endurance energy.
Hopefully I will gain some will power and not dig into "the stash" or have a shopping breakdown.
The picture above is from the last day my mother-in-law, Cheryl, visited to accompany me on my NIH followup appointments last month. One of my favorite restaurants is the Desert Fire in Redmond which offers a Sunday brunch we had never been to. We decided that it would be fun to take her there for her last day. Wouldn't you know they had HUGE platters of chocolate chip cookies and really good Mexican cocoa.
Now how can one resist that temptation? Yes. I am very weak! ;-)
Sunday, April 11, 2010
Got your Spirulina?
Argh. It was a tough long run this evening (5 miles according to the schedule but I forgot my watch and failed to start where the mileage markers start. So I just ran what distance seemed sufficient which could be 4.5 miles or could be 6.). Actually it was a tough training week all together. It did not help matters that Aunt Flo stopped for a visit nearly sapping the life out me (that is a joke by the way which originated off the Cosby show in the 80s for you youngins). :-)
Even with a full day of rest on Sunday and Tuesday, I still had inadequate recovery following the 50 minute run last Saturday. I was trying to catch up all week and it just did not happen. When I got back into it Wednesday I threw too many things into one day with a 4.2 mile hike with a 1200 foot elevation gain, one hour of weights on the legs, and a 40 minute run. Thursday I had to run again but was so relieved that the mileage for the day was 3 miles instead of 4!
Another contributor to my fatigue is my inability for the past couple weeks to get consistent and quality sleep. It is common for me to be interupted within 2 to 4 hours of sleep by having to use the bathroom - sometimes as often as 3 times within a night of trying to get a solid 5 - 6 hours of sleep. I have started taking melatonin but can only seem to pull off about 5 straight hours of sleep. So I am definitely going to have to work on that to get into a biorhythmn schedule.
Aside from the sleep, seriously though I am feeling drained. Of course I have to remember that it has only been 5.5 months since I had a MAJOR brain surgery on 4 tumors unlike when I was training last spring with the advantage of 1.5 years post surgery. So you have to wonder if perhaps that has something to do with my fatigue.
Anyone out there run a half marathon so soon after surgery?
I am desperate to increase my energy levels and efficiency. I felt the drag on the big climb this year when I thought for certain I would do well. Being sick I felt played a big part in hindering my performance but now I am starting to wonder if something else is at play here. I think I am in definite need of exploring additional supplementation and endurance sports nutrition to get waken those energy levels I once had.
It took the following article to prompt me to recall that I was using Green Vibrance last year with Spirulina (not the tastiest but it certainly helped!). So this evening I unburied it out of the back of the refridgerator and added a nice healthy scoop to some spicy V8. Hopefully that will do the trick! I am also considering investing in a book on endurance sports nutrition to attain better efficiency but I am a little undecided on which to get.
Any suggestions?
Now for the article - Got your greens lately? ;-)
Sports Science Update: New Superfood Enhances Running Performance
by Matt Fitzgerald
January 06, 2010
Comments
Algae superfood is shown to increase fat burning and antioxidant protection during prolonged running.
Spirulina is microalgae, powdery and brilliantly green, that is touted as a “superfood” because of its nutrient profile, which includes a lot of protein, vitamin B-12, the essential fatty acid GLA, beta-carotene, iron, and other vitamins, minerals, and phytochemicals. It is sold in powder and capsule forms as a nutritional supplement to be added to smoothies and such.
While it is not often claimed that spirulina affects exercise performance, a team of Greek researchers went ahead and investigated the effects of spirulina on running performance. Nine moderately trained male subjects received either supplemental spirulina or placebo daily for four weeks. Before and after this intervention, all of the subjects ran on a treadmill at 70-75 percent VO2max for two hours and then at 95 percent VO2max to failure. The whole experiment was then repeated with subject who received spirulina the first time receiving placebo the second time and vice versa.
On average, subjects were able to run more than 30 percent longer after spirulina supplementation (about two minutes and 40 seconds with spirulina versus 2:03 without). Researchers also found that spirulina supplementation increased fat oxidation and reduced carbohydrate oxidation during the two-hour run and reduced oxidative stress and increased antioxidant activity after exercise.
It is possible that spirulina supplementation enhanced performance in the high-intensity portion of the workout by reducing carbohydrate use and thus leaving more carbohydrate available. But spirulina’s antioxidant affects may also have played a role in boosting endurance at 95 percent VO2max, as free radical build-up in the muscles during exercise is an underappreciated cause of fatigue.
The study was published in Medicine & Science in Sports & Exercise.
Read more: http://running.competitor.com/2010/01/features/sports-science-update-new-superfood-enhances-running-performance_7682#ixzz0klz6majD
Even with a full day of rest on Sunday and Tuesday, I still had inadequate recovery following the 50 minute run last Saturday. I was trying to catch up all week and it just did not happen. When I got back into it Wednesday I threw too many things into one day with a 4.2 mile hike with a 1200 foot elevation gain, one hour of weights on the legs, and a 40 minute run. Thursday I had to run again but was so relieved that the mileage for the day was 3 miles instead of 4!
Another contributor to my fatigue is my inability for the past couple weeks to get consistent and quality sleep. It is common for me to be interupted within 2 to 4 hours of sleep by having to use the bathroom - sometimes as often as 3 times within a night of trying to get a solid 5 - 6 hours of sleep. I have started taking melatonin but can only seem to pull off about 5 straight hours of sleep. So I am definitely going to have to work on that to get into a biorhythmn schedule.
Aside from the sleep, seriously though I am feeling drained. Of course I have to remember that it has only been 5.5 months since I had a MAJOR brain surgery on 4 tumors unlike when I was training last spring with the advantage of 1.5 years post surgery. So you have to wonder if perhaps that has something to do with my fatigue.
Anyone out there run a half marathon so soon after surgery?
I am desperate to increase my energy levels and efficiency. I felt the drag on the big climb this year when I thought for certain I would do well. Being sick I felt played a big part in hindering my performance but now I am starting to wonder if something else is at play here. I think I am in definite need of exploring additional supplementation and endurance sports nutrition to get waken those energy levels I once had.
It took the following article to prompt me to recall that I was using Green Vibrance last year with Spirulina (not the tastiest but it certainly helped!). So this evening I unburied it out of the back of the refridgerator and added a nice healthy scoop to some spicy V8. Hopefully that will do the trick! I am also considering investing in a book on endurance sports nutrition to attain better efficiency but I am a little undecided on which to get.
Any suggestions?
Now for the article - Got your greens lately? ;-)
Sports Science Update: New Superfood Enhances Running Performance
by Matt Fitzgerald
January 06, 2010
Comments
Algae superfood is shown to increase fat burning and antioxidant protection during prolonged running.
Spirulina is microalgae, powdery and brilliantly green, that is touted as a “superfood” because of its nutrient profile, which includes a lot of protein, vitamin B-12, the essential fatty acid GLA, beta-carotene, iron, and other vitamins, minerals, and phytochemicals. It is sold in powder and capsule forms as a nutritional supplement to be added to smoothies and such.
While it is not often claimed that spirulina affects exercise performance, a team of Greek researchers went ahead and investigated the effects of spirulina on running performance. Nine moderately trained male subjects received either supplemental spirulina or placebo daily for four weeks. Before and after this intervention, all of the subjects ran on a treadmill at 70-75 percent VO2max for two hours and then at 95 percent VO2max to failure. The whole experiment was then repeated with subject who received spirulina the first time receiving placebo the second time and vice versa.
On average, subjects were able to run more than 30 percent longer after spirulina supplementation (about two minutes and 40 seconds with spirulina versus 2:03 without). Researchers also found that spirulina supplementation increased fat oxidation and reduced carbohydrate oxidation during the two-hour run and reduced oxidative stress and increased antioxidant activity after exercise.
It is possible that spirulina supplementation enhanced performance in the high-intensity portion of the workout by reducing carbohydrate use and thus leaving more carbohydrate available. But spirulina’s antioxidant affects may also have played a role in boosting endurance at 95 percent VO2max, as free radical build-up in the muscles during exercise is an underappreciated cause of fatigue.
The study was published in Medicine & Science in Sports & Exercise.
Read more: http://running.competitor.com/2010/01/features/sports-science-update-new-superfood-enhances-running-performance_7682#ixzz0klz6majD
Saturday, April 10, 2010
10 week half marathon training schedule +2
"This beginner half marathon training program assumes you have been running
consistently for at least 4-6 weeks and can run for at least thirty minutes without stopping before beginning the program. Do not run more than two consecutive days when
following this schedule." - MarathonRookie.com
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
Once again, I am following the 10 week training schedule as outlined by Brad Boughman on his marathon rookie website www.marathonrookie.com.
Prior to the Seattle Big Climb event, I had been running weekly increasing the # of running days to 3 and reached 6 and 6.5 miles. Unfortunately, I was foolish in rushing the longer runs and did not stretch out adequately afterward (and did so 2 days in a row!). As a result, I have subcome to a nagging glute muscle injury which keeps getting aggravated during/after each run, even following days to a week off from running. To remedy it in between runs, I have been religiously massaging the glute muscle/hip using the foam rollers at the gym and doing long 30 second stretches of the muscle.
For the most part, I either run on a trail with mileage markers or have a general idea of the distance I am running based on time. Last Saturday I ran on a new trail in Oregon which claimed to be 2 miles in length one way. I finished the 4 miles in under 40 minutes and was skeptical of the length so I ran further down the other side of the trail to total 50 minutes.
When I am uncertain of the exact mileage, I estimate a 10 minute per mile pace and run 10 minutes for every mile according to the schedule. Yes, it is possible that I am running greater mileage per run (especially on paved runs) but that is great come event day! As I discovered last spring, my race pace resulted in a better time than I had anticipated in practice (I mostly train on gravel paths).
This reminds me about a lesson I learned of achieving efficiency. I recall learning to become a scuba diver in the frigid water of Lake Superior in fall 1991. The air and water temps were so cold that we had to pour hot water from 2 liter bottles down our neoprene wetsuits to keep warm between dives. At times I could not feel my feet or my hands. Within a few minutes of dipping my hands into the hot water, they tingled and ached as if being pelted by a million needles. "What on Earth am I doing here?" I wondered.
Sensing our discomfort, our dive instructor touted that learning to become proficient at cold water diving makes you a better diver overall. In essence, it was our training so that later on we can have a more pleasant experience. And I have to say he was right! Following 10 years of cold water diving, I finally was introduced to warm water diving while on our honeymoon in central America. Coming from an environmental requiring lots of exposure gear and technical skill, warm water diving is like diving naked (in a good way)! We enjoyed 28 dives during our stay and this past August we savored 30 dives within 11 day stay in Cozumel.
I must tell you that due to the complications of NF2, diving in cold water is not as easy for me anymore and I am not as skilled. In fact, with the problems centered around my balance and the brainstem compression, I had to take 4 and a half years off of diving. When I started again and transferred from the pool to the real environment, it was MUCH more challenging sometimes resulting in tears and anguish with questions of whether I could dive in the NW anymore.
But........we kept at it and viewed our coldwater diving as "training" so that we could be prepared and enjoy ourselves on warm water vacations. I now consider myself a "handicapped diver". Yet, when we stepped into that clear blue warm water, I felt very comfortable and back in my niche.
So back to my training.....running a little further or on terrain more difficult helps to make the paved 13.1 miles of the half marathon a go a little smoother. That is why often training recommends a "tempo run" day where you run up and down hills to build your endurance. Earlier in the year I had started doing that but have held off since the glute injury as running up hills can make the injury worse. Plus, I engage in elevation hiking at least once a week.
What is the +2? I consider that my buffer zone. I like to allow a couple extra weeks to either ease more slowly into the training depending on how I feel OR reserve those extra weeks for recovery time in case of injury (which I did need to use last year due to an IT band problem).
So that's the plan. I have been keeping up in my second week of training with a 35 minute run Monday, 40 minute run Wednesday, 3-3.5 mile run Thursday, and today I am due for a 5 miler.
Happy Training! :D
consistently for at least 4-6 weeks and can run for at least thirty minutes without stopping before beginning the program. Do not run more than two consecutive days when
following this schedule." - MarathonRookie.com
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
Once again, I am following the 10 week training schedule as outlined by Brad Boughman on his marathon rookie website www.marathonrookie.com.
Prior to the Seattle Big Climb event, I had been running weekly increasing the # of running days to 3 and reached 6 and 6.5 miles. Unfortunately, I was foolish in rushing the longer runs and did not stretch out adequately afterward (and did so 2 days in a row!). As a result, I have subcome to a nagging glute muscle injury which keeps getting aggravated during/after each run, even following days to a week off from running. To remedy it in between runs, I have been religiously massaging the glute muscle/hip using the foam rollers at the gym and doing long 30 second stretches of the muscle.
For the most part, I either run on a trail with mileage markers or have a general idea of the distance I am running based on time. Last Saturday I ran on a new trail in Oregon which claimed to be 2 miles in length one way. I finished the 4 miles in under 40 minutes and was skeptical of the length so I ran further down the other side of the trail to total 50 minutes.
When I am uncertain of the exact mileage, I estimate a 10 minute per mile pace and run 10 minutes for every mile according to the schedule. Yes, it is possible that I am running greater mileage per run (especially on paved runs) but that is great come event day! As I discovered last spring, my race pace resulted in a better time than I had anticipated in practice (I mostly train on gravel paths).
This reminds me about a lesson I learned of achieving efficiency. I recall learning to become a scuba diver in the frigid water of Lake Superior in fall 1991. The air and water temps were so cold that we had to pour hot water from 2 liter bottles down our neoprene wetsuits to keep warm between dives. At times I could not feel my feet or my hands. Within a few minutes of dipping my hands into the hot water, they tingled and ached as if being pelted by a million needles. "What on Earth am I doing here?" I wondered.
Sensing our discomfort, our dive instructor touted that learning to become proficient at cold water diving makes you a better diver overall. In essence, it was our training so that later on we can have a more pleasant experience. And I have to say he was right! Following 10 years of cold water diving, I finally was introduced to warm water diving while on our honeymoon in central America. Coming from an environmental requiring lots of exposure gear and technical skill, warm water diving is like diving naked (in a good way)! We enjoyed 28 dives during our stay and this past August we savored 30 dives within 11 day stay in Cozumel.
I must tell you that due to the complications of NF2, diving in cold water is not as easy for me anymore and I am not as skilled. In fact, with the problems centered around my balance and the brainstem compression, I had to take 4 and a half years off of diving. When I started again and transferred from the pool to the real environment, it was MUCH more challenging sometimes resulting in tears and anguish with questions of whether I could dive in the NW anymore.
But........we kept at it and viewed our coldwater diving as "training" so that we could be prepared and enjoy ourselves on warm water vacations. I now consider myself a "handicapped diver". Yet, when we stepped into that clear blue warm water, I felt very comfortable and back in my niche.
So back to my training.....running a little further or on terrain more difficult helps to make the paved 13.1 miles of the half marathon a go a little smoother. That is why often training recommends a "tempo run" day where you run up and down hills to build your endurance. Earlier in the year I had started doing that but have held off since the glute injury as running up hills can make the injury worse. Plus, I engage in elevation hiking at least once a week.
What is the +2? I consider that my buffer zone. I like to allow a couple extra weeks to either ease more slowly into the training depending on how I feel OR reserve those extra weeks for recovery time in case of injury (which I did need to use last year due to an IT band problem).
So that's the plan. I have been keeping up in my second week of training with a 35 minute run Monday, 40 minute run Wednesday, 3-3.5 mile run Thursday, and today I am due for a 5 miler.
Happy Training! :D
Thursday, April 08, 2010
Tuesday, April 06, 2010
More Eggcellent Fun!
Pictured are some of the eggs we hid for the scavanger hunt. We each hid about 47-50 eggs (my sister and I) for a total of 100. She hides the real eggs and the other half were fake eggs that she put clues inside. Then I wake up and go hunting. When I am finished finding all mine, I write up the clues I have created the night before onto little slips of paper that I put inside each egg. Then I hide all fake eggs with clues in each egg hinting to the location of the next with the grand finale being the hidden location of each family member's easter basket.
Note the teal blue (the NF2 color) Kili egg with Harley's name - he is the founder of the Help Stop NF2 nonprofit and also the coordinator of the Kilimanjaro expedition for 10-10-10. The picture of Mt Kilimanjaro looked kind of sad so we don't see that part. LOL The bright green egg with purple butterflies is the NF2 egg.
Egg Coloring Extravaganza
Easter egg coloring/decorating and hiding/hunting is a family tradition my sister and I GREATLY look forward to. Her hands are very steady compared to mine so she is much more skilled than I at creating beautiful eggs! Every year we try to come up with something unique. Notice the yellow NF Endurance egg and the Climb for NF2 egg I made!. The writing on the blue Kili egg is pretty sloppy but it was a white crayon and I could not see what I was writing and just hoped for the best. On the back of the egg I painted Harley's name and drew a sketch of the mountain. The dye on the NF endurance egg ran because I wrote the name on the egg with a blue marker before dying it yellow. On the next post you will see how I painted purple butterflies on the bright green egg (the color representing NF Inc. and butterflies which is the NF2 mascot).
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