Monday, June 30, 2008

What it takes to fund research.

Conducting research of any kind is expensive. If you have ever been hospitalized, had a baby, or had medical lab tests of any sort, think of how costly it was. Fortunately you mostly likely had insurance to cover most of the costs but think about the portion that was yours and you may have lamented about paying.

When medical research is needed to make advancements such as finding a way to stop NF tumors from growing, there is no insurance to help flip the bill. All of the money comes from compassionate and giving donors and is desperately needed as funding a promising research project is not cheap. First of all, there are the researcher salaries that need to be covered for which minimum wage is not going to cut it. Then you have the cost of all the research and medical supplies such as petri dishes, test tubes, and machinery like centrifuges. Finally you get to the part of all the testing (which takes years and is under hard scrutiny to be approved). There are outside labs and researchers that must be paid to analyze the results. Basically in a nut shell, these type of projects take a sizable amount of money. A research project cannot even be considered without offering a sizeable grant in the tens and hundreds of thousands of dollars.

If NF is not a well known disorder such as breast cancer, diabetes, AIDS, MS, MD, Leukemia, cancer in general, and many others, those of us in the NF community depend on the support of the people we know. We depend on you to also help us gain the support of people we don't know by having you tell your friends, coworkers, acquaintances, and family to gain their monetary sponsorship as well. If you truely cannot afford to contribute, you can greatly help by collecting donations for NF toward your friend or family member's efforts or by hosting a fundraiser yourself.

This is how many of the large nonprofit groups we know about got started. They had the support of friends and family who encouraged the people they knew to also support the cause and it kept growing and growing by the more people they reached out to. However, those organizations would not be as large or influential as they are today without the committed support of friends and family.

If 30 people asked only 4 of their friends to donate the minimum donation amount of $25 I have recieved, that would equate to $100 raised by each of those friends and family making a total contribution of $3000 to my cause! Wow! That is really immense....from zero dollars to $3000 just like that! If I could get this kind of support, we would be much closer to reaching the mission to finding a promising treatment to stop these tumors from growing and requiring repetitive risky surgeries. Mostly importantly, we would find a way to stop these tumors from wreaking the havoc they cause.

Please click the sponsor me button in the left column to make a donation now and seriously and emphatically find at least 4 friends to make a donation too.

NF causes deafness, visual impairment, cataracts, blindness, disfigurement, loss of balance function and mobility, paralysis, difficulty eating and swallowing, dry eyes due to disruption of tear production, dizziness and nausea, vertigo, trigeminal neuralgia pain to the face and jaw, neuralgia pain to the extremities, numbness sensation to the fingertips, muscle weakness leaving some people unable to type, write, or even sign, cognitive difficulties, memory loss, concentration challenges, difficulty reading, learning disabilities, bone deformalities and in some cases the tumors can develop into cancer. The causes of all these problems are from tumors which grow in the brain, spinal cord, and on any nerves in the body.

Please help us to stop these tumors by supporting us with a donation to fund the necessary research. My sincere thanks to you!

Are you making many mistakes or one big one?

"The man who does things makes many mistakes, but he never makes the biggest mistake of all......doing nothing."
- Benjamin Franklin

Monday, June 23, 2008

High Mile Week

Wow! This week I did not take a day off and increased my walking time on several days. Longer time = further distance. In addition, I wore the pedometers during my normal activity too. Holy cow I walk a lot and don't even realize it! One night I had walked a mile just in my house running up and down the stairs and out in the yard just doing things. I wonder how many extra miles I walked that I did not even record?

I got the idea to wear the pedometer all the time by another family circle walking challenge participant. It sounded like a great idea so I tried it out this week. I almost find it unbelievable sometimes the additional miles I cover just scurrying from here to there that I feel guilty logging them and cut some a little shy. With the increase in days of the week and time, I have hit a record week of 54 miles! That is just last Monday through yesterday (Sunday)

To date, starting from May 12th, I have logged 184 miles.

I have yet to put on the pedometer yet and have already been up and down the stairs many times.

Monday, June 16, 2008

Consider This......

A few days ago I posted about a late deafened woman who was denied service at a restaurant because she could not hear. The situation was that she was trying to use the drive through window and the manager became upset when she would not follow procedure by going to the speaker first.

Hello? She is deaf. Therefore she would NOT BE ABLE TO HEAR from a speaker box!

I have to admit when I first discovered she was going through a drive through instead of going into the restaurant to order I was like "Huh? You are deaf so why would you use the drive through?" I had another friend with hearing loss think the same thing at first until she found herself in a position of wanting to use the drive-thru because she just got out of the shower and was not looking very presentable. Further, the restaurant was busy and filled with tons of people.

Now I am not a fast food connoisseur. If I ever do consume food from a fast food restaurant on a very rare occasion it would be a small vanilla ice cream cone or a shake from McDonald's, a salad from Wendy's, or a roast beef sandwich from Arby's. My point it that I would not often find myself in this situation because I don't eat fast food. Additionally, I don't have any kids which may make it hard to see myself needing to use a drive-thru at a restaurant.

Before you pass off the incident as being insignificant consider this....

A) You are a deaf or hard of hearing mother with an infant in the car and you just want to stop and get a coffee or juice in the morning on the way to where ever you want to go (maybe a doctor checkup). Now for those who do not have kids, you may think going in the restaurant is no big deal. However, IT IS!

Now again I do not have kids but I am the oldest of 3 siblings 7 and 10 years apart from me in age. Further, as I am in my 30s I have plenty of friends whom I have witnessed caring for their babies. Wha! It is lots of work and a HUGE deal getting the kid out of the car seat and then carrying them around everywhere you go. I am amazed at the physical demands of such and the balance and stamina needed just to do the simple task of carrying a kid around in a car seat or without.

Now remember, you just wanted to quick grab a coffee or juice? Well if you had to go through all the work of taking the kid out of the car it really wasn't worth it and would make you late for where ever you are going.

Some people might say "Leave the kid in the car." Well that could present a number of problems you might not foresee. Is it even legal to do that? Second, let's day it is really hot out and the restaurant is really busy so it may take 15 minutes or longer to get what you want. Meanwhile, the car is cooking up and temperature rising with your child trapped inside while you wait for your order.

I am a dog owner. Luckily I have a truck with a canopy so they have lots of room and it has windows for ventilation. Still, on hot days I am very cautious or where I park and try to find shade so the back of the truck does not heat up inside. I also provide them water and watch the time that I am gone.

So that brings me to the next situation:

B) You are a deaf or hard of hearing dog owner but only with a car with your dog inside. It is an extremely hot day and again the restaurant is busy (Perhaps it is lunch time). There are warnings given out by the animal shelter that in this situation 10-15 minutes can put your pet in dangerous medical situation of dehydration. Now you may have gone through dehydration yourself but were you wearing a fur coat on your entire body in temps above 100 degrees at the time? Don't believe me that I am serious? Think it is a wives's tail? A good friend of mine would regrettably tell you it is true as she lost her 8 year companion to a situation like this. The vet tried attempted to save the dog by administering IV fluids but it was too late.

C) As a deaf or hard of hearing person, you are on the road traveling and are super hungry. There is only one restaurant at a pull off to get some quick food. Unfortunately however, the entire football, basketball, hockey, track, or cross country team got to the restaurant before you. The whole team and parents are in there ordering right now. Can you wait that long? Are you in a hurry to get back on the road?

D) You are a deaf or hard of hearing person with a physical disability making it an obstacle to go into the restaurant. It would be much quicker and accommodating for you to you the drive-thru to order.

I will provide one last situation as I could come up with many.

F) You are a deaf or hard of hearing mother with 3-6 children in the car....even 2 would make going inside the restaurant inconvenient. You just want to grab some food and have lunch at the park with the kids as it is a nice day. Being the responsible parent you are, you don't want to leave them in the car. It would be a hassle to lug your whole crew inside just to order and get your food. Being able to use the drive-thru would make life so much easier and save time.

After all, that is why they created drive-thrus. Right? ;o)

Good quote fitting for my hike and life philosophy

"Make no small plans for they have no power to stir your soul."

- Anonymous

taken fron the book "Making A Difference: 12 Qualities That Make You A Leader" by Sheila Murray Bethel

Leadership Quality One: A Leader Has A Mission That Matters; The Secret Of Building Charisma

Thursday, June 12, 2008

Deadly tornadoes strike HIKE4NF team's path!

An article just posted within the last couple hours on yahoo news: Boyscouts killed in Midwest Tornado

Currently Jodi and Josh are hiking through the targeted tornado territory with their next destination of Omaha, Nebraska where the path of more storms and tornadoes rage. On Jodi's trail journal from yesterday they were hiding out in a good samaratin's basement where actual tornado sirens were sounding off! To read her journal click the lighthouse icon in the post title. To follow their journey and keep up to date, refer to the direct link to her trail journals and their Hugs For Humanity website in the left column of this blog found under the main heading "HIKE4NF".

Please keep them in your thoughts and prayers for safe travels and also for the families who have lost loved ones and residents of the area to stay safe.

Now for the article:

Boy Scouts among dead as tornadoes hit Midwest

By Kay Henderson 1 hour, 20 minutes ago

DES MOINES, Iowa (Reuters) - A tornado roared through a Boy Scout camp in Iowa and flattened a cabin where many campers had sought shelter, killing four teen-aged boys and injuring dozens of others.
Close to 100 Boy Scouts scrambled for safety in shelters at the Little Sioux Scout Ranch when the tornado hit on Wednesday evening, one of dozens of twisters that ripped across the U.S. Midwest into the night.
"We had no warning really at all," scout leader Thomas White said on Thursday morning. He said scouts were watching the clouds and the lightning storm when they saw a funnel form in the sky and began to run.

One cabin where scouts sought shelter was in the path of the tornado, and White said in television interviews that was where the boys died.
"It hit and all the doors flew open and it popped my ears," Rob Logsdon, 15, said. "The walls and the porch and the roof just disappeared. I got hit by a table in the back."

The boys killed at the camp were identified as two 13-year-olds and one 14-year-old from nearby Omaha, Nebraska, along with a 13-year-old from Eagle Grove, Iowa.

"Everybody had to be particularly touched by thought of the finest young people from this region being caught up in a tornado which struck them like a bowling ball and against which they had no chance," U.S. Homeland Security Secretary Michael Chertoff said in a news conference in Blencoe, Iowa, near the scout camp.

This has been a particularly deadly year for tornadoes, with 118 deaths attributed to twisters -- including 16 in Iowa -- the most in a decade.
At least two tornado warnings were issued for western Iowa before the twister struck on Wednesday evening.

Camper Hal Emas, 14, said 40 boys huddled in one shelter when a siren blared and the scout leader shouted "under the table!" "Two seconds later, the walls blew out. It lasted for about 10 seconds," he told the Des Moines Register.

Television images showed felled trees and debris strewn across the devastated campsite.

Boy Scout leader Lloyd Roitstein said the shelters were not built to withstand tornado-force winds. He said the campers knew foul weather was on the way and tried to prepare.

Officials said 94 campers and 24 adults were at the camp for a weeklong training event. Forty-eight people were injured, including many who remained hospitalized.

Nebraska Gov. Dave Heineman, who toured the site, described the scene as one of utter devastation. "In some ways it is amazing we didn't lose more lives than we did," he said.

Rescue efforts at the 1,800 acre (728-hectare) camp, nestled in wooded hills in western Iowa, were hampered by downed trees, lightning strikes and heavy rain. Many of the Boy Scouts, who had emergency training only a day before, quickly began helping one another.

"There were some real heroes," Iowa Gov. Chet Culver said.
Accidents have befallen boy scout troops over the years, including two deadly lightning strikes in the summer of 2005, the same year four scout leaders were killed in Virginia in front of horrified boys when a tent pole touched a power line.

More than 50 tornadoes were reported on Wednesday across Kansas, Nebraska, Iowa and Minnesota, some accompanied by baseball-sized hail. The storms compounded the damage from rampant flooding that has forced thousands of people from their homes in the Midwest.

In Kansas, twisters killed two people and injured dozens, with 60 houses destroyed, said state emergency management operations spokeswoman Sharon Watson.

One ripped through Kansas State University's campus, with damage expected to exceed $20 million, a school official said. (Additional reporting by Andrew Stern in Chicago; Editing by Doina Chiacu )

Protecting Rights of People With Hearing Loss - What Does the Law Say?

By Jennifer Millman. Date Posted: March 07, 2008

How many people have hearing loss? More than 31.5 million people have a self-described "hearing difficulty," according to the U.S. Equal Employment Opportunity Commission (EEOC). But that number is expected to increase as the baby-boomer generation approaches age 65. Adults 65 and older have the highest percentage of hearing loss compared with other age groups.

But there is substantial diversity among those who are deaf or hard of hearing. They come from all ages, races/ethnicities, genders and orientations and have varying degrees of disability. "Protecting civil rights of people who deaf and hard of hearing requires that this diversity in relation to hearing loss be acknowledged," said David Alexander, director of the Division of the Deaf and Hard of Hearing.

The conference outlined some of the main concerns and problems facing people with deafness and hearing loss in employment, public accommodations, government service, entertainment, schools, housing and other areas, as well as how to prevent discrimination.

It happens frequently. Read 'Second-Class Citizen': Deaf Mother of 3 Denied Service at Restaurant for one deaf woman's story about being denied service at an Illinois fast-food restaurant. Karen Putz tried to explain to a drive-through attendant that she needed to communicate her order through the window rather than the speaker because she couldn't hear through the speaker, but the attendant ended up threatening to call the police because she was "holding up the line," slamming the window in her face.

In the employment realm, the reality is that there's no law to guarantee hiring and promotion of people with disabilities on par with their representation in the talent pool, and corporate lawyers can be creative when it comes to finding loopholes in existing civil-rights laws. While the law prohibits discrimination against all people with disabilities, the panelists said infrastructure change is needed to make real progress.

Good companies do a good job of recruiting and retaining a diverse work force--diversity as it relates to age, race/ethnicity, gender, disability and orientation--and their workplace cultures reflect that inclusiveness, said J. Frank Vespa-Papaleo, director of the New Jersey Division on Civil Rights. "These companies do it right from the beginning," Vespa-Papaleo explained.

Check out DiversityInc's Top 10 Companies for People With Disabilities to learn how these employers make inroads and tap into this talented, often under-utilized work force.

What Does the Law Say?

The Americans with Disabilities Act of 1990 (ADA) is a federal law that prohibits discrimination against individuals with disabilities, including deafness and hearing loss. Title I of the ADA addresses employment, covering private employers with 15 or more employees and similarly sized state and local government employers. Most states also have their own discrimination laws that include disability, and these statutes may provide even more protections than those afforded by federal law.

The conference kicked off with introductions and legal training on the state and federal level as it relates to disability law and reasonable accommodations, which is one of the blurriest areas of all civil-rights laws. At what point does accommodating someone's disability, such as requesting a sign-language interpreter for a person with hearing loss, become an "undue burden" on the employer? It depends on the size of the employer, access to and cost of equipment, the type of accommodation requested and how it relates to an individual's ability to perform the essential functions of a job, for example.

Each case must be evaluated on an individual basis because an individual employee's view of what is "reasonable" often differs from that held by the employer. Find out why disability is the most complex of EEO laws from a former EEOC chair and DiversityInc's legal expert. These are tough questions. Get EEOC guidelines.

Download the division's guide to disability discrimination to learn more. (access by clicking on the lighthouse icon in the post title) Also check out the fact sheet on rights for people with hearing loss under state law.

Discrimination charges on the basis of disability accounted for 21.4 percent of all those filed with the EEOC in 2007, down from 22.4 percent in 1997, according to agency charge statistics. The EEOC recovered $54.4 million in monetary benefits, which exclude litigation fees, for disability-related discrimination cases that year, up from $41.3 million in 1997. Charges based on hearing impairments comprised 4 percent of total disability-related charges in 2007. You can get more facts and statistics on disability-related EEOC charges here.

In the federal work force, employees with targeted (or severe) disabilities account for a mere 0.97 percent of the total permanent work force. That number has declined every year since 1993. "Overall, the federal government is losing more people with targeted disabilities than it is hiring each year," reports the EEOC.

In 2006, deaf people made up 18.3 percent of all federal employees with targeted disabilities, but their representation has declined every year since 1997 for a total loss of 7.22 percent. Representation of deaf employees in federal government among those with targeted disabilities is second only to employees suffering from mental illness, who make up 24 percent of all federally employed individuals with targeted disabilities. Still, the number of those with mental illness has gone up over the last decade.

Download the EEOC's report to improve opportunities for individuals with targeted disabilities in the federal work force for key statistics and recommendations.

What to Do if You Think You're a Victim

A Q&A session at the conclusion of the conference became emotional when deaf and hard-of-hearing people painfully expressed their experiences facing rejection when trying to get jobs, enjoy public accommodations or contribute to society.

State and federal legal experts had advice for those who feel they are victims of discrimination:

Keep notes. Document times, dates and the names of individuals who you feel discriminated against you.
Reach out. After you contact the organization you feel is not accommodating your disability or discriminating against you in some way to make them aware of the situation, contact your local civil-rights division or EEOC office. You can find out more about how to file a complaint at
Educate. Engage the assistance of hearing-loss advocacy organizations to help educate your employer because sometimes they don't intend to exclude certain groups; they just don't think about it.
Advocate. Involvement in state and national associations for deaf people and collaborating with individuals, employers and government representatives is key for large-scale change.Make the business case. At the end of the day, it's all about numbers. Making a compelling business case to your employer, for example, about how providing access to certain equipment will help you be more productive in your job and to the bottom line is likely to gain buy-in.

Deaf woman denied service at restaurant

Karen Putz, who is deaf, was denied service at a Steak 'n Shake restaurant drive thru in Illinois. Find out what the company has done to address this incident.

click the following link to watch the streaming video which is also captioned and interpreted

'Second-Class Citizen': Deaf Mother of 3 Denied Service at Restaurant
Eric L. Hinton. Date Posted: March 05, 2008
But it wasn't until she was denied service at an Illinois fast-food restaurant and found herself face-to-face with discrimination that the mother of three wound up writing about herself.

Read Karen Putz's account of her incident on her blog, DeafMom World, in her own words.

Putz's incident occurred in January at a Bolingbrook, Ill., Steak 'n Shake fast-food drive-through while she was with her 10-year-old son. It's an establishment she had frequented regularly. Because of her disability, Putz normally places an order directly with the drive-through attendant rather than the speaker because she has no ability to understand speech without lipreading.

But on this occasion, the attendant refused to take her order, according to Putz.

"When the manager came to the window, I explained that I couldn't hear through the speaker and gave him my order. But he asked me to go around again and give him the order through the speaker," she says.

Putz explained that because of her disability, she needed to give her order at the window. "But he mentioned something about the computer, orders and company policy and asked if I could just drive around and give the order through the speaker," she says.

That's when the situation escalated. Putz explained that even if she drove through again she would still need to use the window to place her order. She then gave the drive-through attendant a quick tutorial in the Americans with Disabilities Act, but the attendant didn't get it, she says. "He said, 'If you had just told me about your disability when you first drove up to the speaker, I would be able to accommodate you at the window.' I was dumbfounded because I was trying to explain it to him from the start," says Putz.

That's when the attendant threatened to call the police on Putz for holding up the drive- through before slamming the window on her, saying he was done, she says. She soon got the attendant's name and the company's corporate number to file a complaint.

After Putz filed a complaint, the company responded through Bill Harnew, group director of communications for the Steak 'n Shake company. DiversityInc contacted Harnew directly and he responded via e-mail: "Steak 'n Shake regrets the misunderstanding between Ms. Putz and one of our Associates. Ms. Putz has been a long time loyal customer that we greatly value. Whatever the situation, our Associates are trained to be responsive to all of our guests' needs. We have met with Ms. Putz to offer her our personal apology for the experience she described. This incident has reminded us that we must continuously keep our associates focused on customer needs and satisfaction. A communication was sent out to all Chicago land Associates to increase their awareness and sensitivity. Lastly, we are exploring ways to add a communication to our drive through menu boards that directs guests with hearing difficulties to go directly to the drive through window."

Putz says although she was contacted by Steak 'n Shake's director of human resources and received an apology, she was never informed what happened to the drive-through attendant.

A customer at the establishment several times before, Putz has never experienced this treatment. Also, the attendant in question wasn't a teen who might not have known better but an adult manager who provided training on how to deliver superior customer service.

She says the attendant "treated me like I was a second-class citizen unworthy of getting service because I could not (or would not, in his eyes) follow procedure."

Putz says corporate executives were able to view a video of the incident without sound and acknowledged to her the employee acted inappropriately. "They said they simply could not understand why their employee failed to deliver. He broke all five of their customer-service guidelines," she says.

Her frustration, Putz says, grew to anger because the attendant was unwilling or unable to understand her situation. "I was getting angry because he was asking me to do something that I couldn't physically follow through with and he was unwilling to acknowledge that. It took every ounce of willpower not to blow up at this man when inside I was truly boiling. I also realized that I had my young son with me and he was experiencing discrimination for the first time in his life," she says.

To date, Putz still has not received an apology from that manager directly. More importantly, Putz would like the restaurant chain to dramatically reevaulate the way it interacts with patrons with disabilities and add sensitivity training for employees. She sat down with executives from Steak 'n Shake, asking them to modify all of their restaurants with a solution called "Order Assist," provided through the company Inclusion Solutions, which tailors products to assist patrons with disabilities. She also suggested the restaurants could include touch-screen menus.

The executives took her suggestions under advisement. In the interim, she's considering hiring an attorney. For more on Inclusion Solutions, read the March 2008 issue of DiversityInc magazine, out soon.

"I have given them every chance to respond to us and show that they're willing to seek out solutions to this in ways that will benefit all of their deaf, hard-of-hearing or speech-challenged customers," she says.
Putz pledges she won't return to the restaurant until they make efforts to make sure that the employees understand how to treat customers with disablilities and truly welcome them into restaurants.

Current Mileage

Of course you know that I am training right now for my 31.5 mile hike in September. As such, I cover a fair amount of miles weekly. About 3 weeks ago when I was standing in line waiting to check out at Safeway, a family circle magazine caught my attention.

In all honestly the reason I picked it up was the front cover heading "Swimsuits to flatter every shape." While I am smaller now (yet lately need to lose about 5 pounds), finding a swimsuit that fit right and looked right on me has always been a challenge. I have always had to consult such articles to get advice on what the latest and best styles fatter my figure.

While I was standing there thumbing through the magazine, a partticular page caught my attention. It was a small photo of a pair of Keen trail shoes and one of the styles I totally love! The shoes are light weight, have good tread, and were one of the few I could wear when I lost my balance. Also pictured was athletic wear by moving comfort which is another of my favorites. I am the proud owner of a couple of moving comfort thermal shirts which have served me well.

There was additional gear listed too but the Keen shoes and moving comfort brand clothes are what captured my eye. I was even more enthralled to see that there was a claim that the items pictured could be mine by entering a contest. Keen shoes ($120 a pair retails) and a moving comfort outfit (retailing $40-$60)? Woohoo! I am there! :o)

My excitement was further heightened once I read that the contest was a walking challenge! I walk nearly everyday and am putting on many miles training for my distance walk/hike in September. Surely I have somewhat of a shot in the contest. Entering the contest would also provide me incentive to get on the ball and keep up with my training which must be done anyway. It seemed like a great motivator.

The contest is a walking challenge to see who in the country will walk the most miles over 3 months. It began on May 12th and from the site I was able to log in the miles I had accumulated during the days I had not registered yet because I was not aware of the Challenge.

Today is June 12th, exactly 1 month completed since the start. Last night I figured out my mileage and not including the hike I have yet to do today I have traveled 114 miles!

I emailed Jodi Harrington and encouraged her to enter as I believe she will win. I seriously doubt anyone is putting on the mileage she has been over the past 4 and a half months and will over the remaining 4 months it will take to reach Point Reyes National Seashore in San Francisco.

Currently Jodi is taking a "Hike4NF" and it is a major hike at that! In February she began on the Atlantic coast in Delaware and set out on the American Discovery Trail across America. She and 2 other hikers have averaged 25 miles a day! So for the past 4 and a half months they have been continuously hiking that distance daily with sometime a day off and sometimes none! Their weekly mileage exceeds what my total is in a month!

Why is she doing this you may wonder? It is all part of the fundraising and awareness campaign to raise funds needed for medical research to find a cure for NF which I have. Athough it is turning out to be a more common disorder (1 in 4000 births are afflicted with NF1 and 1 in 25,000 births for my type which is NF2) still very few people have heard about it or know what it is.

Jodi and I are doing our extraordinary hikes because we want YOUR attention. We want you to know that NF exists, what it is, and how it affects people. We also want you to tell everyone you know about us and why we are doing it to encourage people to sponsor us and support the needed research to find a cure.

NF (Neurofibromatosis) causes tumors to grow in the brain, spinal chord, and on any nerves in the body. Living with NF can be frustrating as well as emotionally and physically painful. NF causes deafness, blindness, cataracts, visual impairment, loss of balance function, muscle weakness, paralysis, stroke, eating and swallowing difficulties, loss of tear and saliva production, disfigurement, bone deformalities, mental cognition challenges, learning disabilities, and even death in extreme cases from complications of the tumors or surgery.

Traditional cancer treatments are not effective at treating NF tumors because they are benign and usually slow growing. Thus, surgery is the only method of removing these tumors or parts of them which are not attached to critical structures such as the brainstem. Repetitive surgeries are often needed as the tumors can and do grow back.

Please help support the necessary research needed to find a cure and lessen these devastating side effects by generously making a donation to our efforts. Thanks!

My fundraising page

Jodi's fundraising page

Thank you Skip!

In reference to the post "Wow! Dilemma!"

A couple weeks ago I posted about my need for a special alarm clock which shakes the bed to wake me up. My old one had broken and Harley was not home to wake me as he has been doing since we had to trash the old one. Because it is a special alarm clock not sold in regular stores, I could not get one where I lived and the closest store where this type of clock could be purchased was not only located in Seattle but closed the day I needed to buy it.

Fortunately my friend Skip, who lives in a neighboring town, was able to lend me his. When I went over to his house to pick it up, he told me that he bought a new one for a friend who had not used it. Apparently this friend, who is in retirement, did not have a need to wake at a certain time so had not even taken it out of the box yet.

Skip told me that he was going to see his friend that weekend and find out if she was planning to use the clock and if not he would give her something else as he knew someone who could really use it.

Well to my fortune it all worked out! I kept Skip's clock that I had borrowed and he kept the new one he bought that his friend did not use. These clocks are hard to come by and not cheap either so I greatly appreciate Skip's cheerful generosity! I will definitely get lots of use out of it!


Well it is confirmed. My pedometer is a hunk of crap!

Last night we went to the Marymoor dog park in Redmond again. The dogs love it there, I can let them run around off leash, and is lined with soft bark or crushed gravel. While I do have more difficulty walking on it than a flat paved trail, it is good practice for my hike as the trail I will be hiking on is not paved and composed of either hard and lumpy compact dirt and rocks or crushed gravel (It varies from going through the farmland to heading up the ridge).

I took my cheap free pedometer again. It was free because it was acquired through buying and eating X amount of boxes of a particular brand of cereal. Right there should have been my clue that it was merely a tacky novelty instead of a piece of gear for hard core serious walkers, hikers, and runners.

We did laps around the entire park which is over a 100 acres large (not quite sure the exact size but it is the biggest dog park in the state of washington). After the first lap I pulled the tiny device out of my pocket and it read 1.1 or 1.2 miles.

"Great!" I happily thought. If I briskly do 4 laps I should complete about 4.5 miles! Or, I could cut it slightly short by taking a trail crossing the park in the middle on my last lap to make it 4 miles and save some time.

It was a nice idea. So I hoofed it and really pushed making my rump muscles slightly sore. My goal was to complete the jaunt in an hour. Thus I only stopped for a few seconds to pick up poop from one of the dogs. The rest of the time I just kept going and when I passed the accesses to the river the dogs ran down for a drink and then caught back up with me.

On the beginning of the 4th lap I checked the pedometer to monitor my progress "What? 2.4 miles?" I was totally ticked off and frustrated. Wouldn't you be if you are working your butt off for nearly an hour and you are told you have not gone far?

When I had first used it on a recent training walk I was shocked to find it read 3.88 miles after walking briskly for over an hour. I had my doubts about if the reading was correct but I had not done a route with laps where it could have been checked. Further, a portion of the route was uphill and then I had to go off the trail to use the bathroom. So I gave the pedometer the benefit of the doubt even though I was not happy about it and disappointed I had not completed 4 miles or more.

This time it was VERY obvious by monitoring the distance of the first lap and comparing it to the final result. If I had gone about a mile on the first round, then I should have completed at least 3 miles in 3 laps right? Instead the darn thing told me I had not even completed 3 miles after 3 and a half laps of the park and 1 hour 10 minutes of walking!

I also know this to be true as I am in great shape right now and not walking slow. When I walked 26.2 miles in the Seattle marathon I completed the course in 6 hours 47 minutes which is roughly 3.75 miles an hour (for 26 continuous miles!). So surely I could complete 3.75 miles in one hour! During the marathon I had also made a few stops to take pictures, tie my shoes several times, and use the honey buckets (which at one point I had to stand in line for 10-15 minutes). Therefore, knowing my pace from that experience, it was clear the pedometer had been wrong.

Today I am going to run to GI Joes and Big 5 Sports to see what is available and how much they cost. I am thinking I should get 2 to try out and compare readings to make sure I don't get a hunk of junk again.

Normally with everything you trust your guages (flying a plane, navigating through the woods, your pressure guage while scuba diving, etc.). This is one exception to that rule as is diving with a computer where the computer could be wrong and you must know how to calculate your dive tables to ensure you are not passing your limits for nitrogen absorption.

Biting the Dust...err..damp gravel

The week before the furry 5 K I did a few training runs earlier in the week. The dogs' leash broke a month or 2 ago so I bought a new one which is a kind I have been interested in trying for a long time. It is called the "Free Leash" as you can walk them on leash "hands free". It is an elastic buckle that snaps around your waist and has a movable attachment connected to a leash. So basically your waist is walking the dogs on leash. The leash has a stretchable bungee and a hand grab if you prefer more control. I often use the hand grab so my foot does not get tangled tripping me in the slack sometimes created between the dogs and I.

So anyhow, that is our current running setup. I got out late on the trail last Wednesday night and did not actually starting running until 9 pm. It was kind of dark in the woods but there was enough light to get me through the 20 minute section where the trail exists back out to an area lit by street lamps. At this hour my only concern was having enough illumination to see the trail and run. I did not think about what may happen in the woods at this time of day As at result, I had an unpleasant surprised that I was totally unprepared for! The following is another letter I wrote to a friend I had not talked to in many months. He had inquired how my dogs were doing.

"I made the dumb mistake of getting out to late as it was becoming dark. We started running at 9 pm which I thought was still OK as it would take 20 minutes to go through the woods trail and make it to the part lined with street lamps.

That plan was great but I forgot that the dang animals come out at that time which Katie and Jake are too curious about and like to chase if we happen to go to the dog park at that time. So I am running along (I have them on a Free Leash strapped around my waist). All of a sudden I see them dart in front of me extending the full bungee of the leash and giving it a sharp yank. It was like watching myself in a movie. Once I felt the immediate tug of the leash I saw the dogs pointing with their ears perked up and then the little bunny scurrying around. I attempted to pull them back but my 128 pound frame was no match for the adrenalin and strength behind their 65-70 pound frames. It happened very quickly but I could picture the scene happening before my eyes while my body snapped from the pull of the bungee and lunged forward. I painfully skidded on the crushed gravel trail skinning my knees and elbow. Fortunately I was wearing long running tights and a long sleeve polar fleece workout top. The durable material held and absorbed my fall without tearing. However, I pulled down my pants to find my knees a scuffed up bloody mess! I was so angry! But I got up after a short spurt of rage accompanied by pain and wanting to cry and continued to finish the run (the incident happened within the first 10 minutes leaving me 25 minutes remaining).

So that was no fun. "

Dead White

In May I had more occurrences of the Raynard's Syndrome (when fingers or toes loose blood circulation randomly). This time I took notice that it always happened to the same finger on the same hand (my left middle finger that supposed to be symbolic? If I lost that finger I would be giving people the bird every time I wore gloves!)

The first incident happened the day after we returned from Vegas and I went grocery shopping. Perhaps my body was in a state of shock from going to a hot and arid climate to a rainy and cool one. While I had been wearing my light gloves, I took them off to leave in the truck before entering the store. My gloves are like glasses. I did not want to loose another pair (I have lost 4 pair within the last few years).

Immediately when I arrived Costco it started to lightly hail. So I hurried to the entrance not far away (maybe 300-500 feet). Once I entered the store, my finger began to feel stiff and hard to move. I looked down at it to see that my finger was beginning to change color and turn white.

"Oh great!" I thought. The store was only going to be open for a half hour more and I did not have time to go in the bathroom and fart around trying to revive it under hot running water. The store (Costco) is a rather large warehouse and would take me that amount of time to quickly race my cart from end to end picking out what I needed. Sigh

So I went ahead with shopping while vigorously rubbing the finger. It was no luck and the finger continued its unusual metamorphosis into a stiff white popsicle. The finger literally looked like it was dead and frozen.

Desperate to revive it, I put my hand under my shirt and tried to warm it with the heat generated from my belly. Stilll, the popsicle remained! Even though I had reached the point of seriousness and was in need of some real heat, I was not about to go walking around the store with my hand down my pants!

What to do? What to do? At the time I was in the cooler section so there was nothing that was going to help my situation and the bathroom was a very far jaunt away at the other end of the store. If I had gone there to attend to my finger, there was no way I was going to be able finish shopping in time or even be able to checkout probably. Thus, it would have been a wasted trip and my mission to get food for us would have been futile.

Luckily, the roitesserie chickens are located next to the meat department. To keep the chickens warm, they are put under heat lamps in a display case. Ah! That should be enough warmth! There was a signed posted on the metal part of the case that read "Caution: Hot. Do Not Touch!"

Not wanting to burn myself unknowingly at first as I had lost feeling in the finger, I tested the temperature of the metal with my other fingers. It was hot but not too hot to touch. It did become hot over time but would offer enough warmth to re-invegerate my finger.

I must have looked absolutely ridiculous standing there not looking at the chickens but holding my finger to the metal. I am sure the employees passing by to inform customers that the store was closing soon thought I was a loon! Out of the corner of my eye I saw the butcher standing there as if waiting for a reply. He probably asked me if I needed help as I was just standing there at this chicken case but not grabbing any of the hot chickens to put in my cart. Since I could not hear him, he got no response from me at all (I am sure confirming the thought that I was not all together with it.!) Finally I saw him walk away. I did not want to look at him. I did not feel like explaining about being deaf and further telling the story of my weird dead finger.

I don't know how long I stood there....5 minutes, 10? When the sensation and color returned to my finger I was greatly relieved as I could finish my shopping and go about my normal business instead of looking like an idiot with my hand on the hot chicken counter.

The next week I had 2 more incidents the day after another. Again, I was in the store shopping and briefly touched something cool (yogurt). In one case my finger had turned pure white and stiff by the time I made it to the cash register. To warm up the finger I had to turn on the seat heaters on the way home and sit on my finger while I was driving.

Fortunately I have not had any occurances this month. Although it is June, we are in a cold spell with temperatures in the 50s and rain so I am wearing my gloves everyday. I did something really stupid and forgot my gloves on a day when it was raining and I was out for a training walk of over 2 hours. For a long time I had to walk with my hands in my pockets which I luckily became able to do again after surgery. It is rather hard to walk for a very long time keeping your hands in your pockets so eventually I pulled the arms of my thermal shirt over my hands and tucked them up into the arms of my jacket. The energy used and created by quickly walking generated heat from my body and hands. Then rain stopped and the sun came out which helped me get through the training without incident.

Parched - longest training walk May 25th

Although I have been continually training (it is a part of life now) since spring 2006, I officially began to take the extended hike I will do this September seriously this month. I had already begun to incorporate some longer hikes (2 hours) about once a week for the past couple months but I officially did my longest training hike for the year on May 25th (2 hours and 40 minutes).

The day was pretty warm (like summer unlike now where the daily temp has been in the 50s) and the dogs and I headed out to the Snoqualmie Trail where I will be doing my hike. I have only covered portions of the north trail for about 12 miles so I started out on the section where I had left off on my last 2 hour jaunt.

Now I had never been on this central/southern part of the trail so I had come unprepared for the dogs. In the sections traveling through Duvall and Carnation the trail meanders through the low valley where it passes by ponds, creeks, and rivers where water is assessible. I have not needed to carry water for the dogs since the years before I lost my balance when we would go on a long day hikes in the mountains. As such, I have fallen out of practice carrying water for them.

To my surprise, this section of the trail climbed higher in elevation and on to a ridge where it was dry and water was too far down to safely reach. Now it would not have been terribly bad if the weather were cooler and puddles from the rain had been left behind. However, the weather was hot enough for me to be warm in a moisture wicking tank top and shorts. Imagine having to wear a fur coat and temperatures like that! Further, the unusual warm spell dried up any puddles the could be left around. The following is my experience I wrote to a friend in a letter. I will definitely need to keep this in mind for future hikes and into the summer.

"Today the dogs and I walked for 2 hours and 40 minutes. I figure we only went about 9 miles though as I had to stop to give them rests and try to find water. I did a really stupid thing which I don't think I have ever done before. I did not carry water for the dogs. I used to carry a 2 liter bottle for them when I was an avid hiker. Since losing my balance I have not gone on those kind of hikes with them nor gone for that length of time. It got hot here too which was fine for me with a cool moisure wicking tank and light material hiking shorts but not for them with big fur coats. It was at least mostly shaded on our path and higher in elevation so it was slightly cooler. Anyhow, on the northern portions of the trail it is in the lower valley and next to several sources of water. The portion we went on today traversed high up and away from any sources of water. I was hoping we would cross a river or creek but when we did it was a trestle at least 150 feet high! There was no way we could make it safely down the steep embankment.

So we kept walking and I thought I would surely see something but the trail continued going up along this ridge.I felt so horrible! It would be like having an infant and forgetting to feed him for a day! I was worried they were going to get dehydrated and Katie gets hotter than Jake. There were several times that we stopped and she just lied down and we needed to give her a break. It had been just over an hour of fast pace walking in 70 degree weather since they last had a small drink at the truck.

I thought "God please let us find some water." I had my own squirt type water bottle but no method to give it to them. I tried squirting them in the mouth but that was unsuccessful as they closed their mouth and looked away. (My dogs don't like being squirted and hide under the deck when I am watering the flowers.)

It was clear we were not getting close to any water so we turned around. Then finally we came upon a puddle from the rain yesterday that I had not see before. I was not too crazy about them drinking from it but it was more fresh than stagnant pond water. Further on down the trail I spotted a creek with running water down a type of gulley with a side trail accessing it that we could both make it down. Phew!"

Monday, June 09, 2008

The Furry 5K - Second event of the Quest4NF

Yesterday morning completed the second feat in my quest4NF by running the Furry 5 K at Seward Park in Seattle. When my alarm first went off at 7:30 am my first reaction was to press the snooze. But then I remembered it was the day of the event and jumped out of bed.

It was easier waking up this time and having the mental and physical energy to attend the run. I was sort of excited actually. It is one of the few events in the state of Washington where owners are allowed and encouraged to participate with our dogs. Katie must have known it was a special day because she woke up immediately and came out of her house to greet me at the kitchen sliding glass doors when I came down for breakfast.

"I'm ready mommy!" as she stood alert with her tail wagging back and forth. Then Jake slowly sauntered out of his house too. Usually they are still curled up in a ball in their house until it is apparent I am going to feed them.

When we arrived there was a full park of participants and their dogs like going to some kind of fair. There were so many people there that Harley had to park the truck far away which I realized when we walked back.

I missed the start as I was waiting for Harley at the registration tables but not knowing he needed a bib number (as he was a walker), he was waiting at the starting line which was a different location. I waited as long as I could and finally gave up and headed to the start where we ran into each other.

There were so many walkers to move through that I reached the start a couple minutes after 10 am which was the start time for the run. Thus, I checked the time on my watch and started running. However, it took some time to move through the walkers who started early (their start time as indicated on the sign at registration was supposed to be 10:10 am.) All I can figure is there must have been some confusion and they started at the same time as the runners. The entire road was filled and I had to weave around them off to the side on the dirt trail or grass.

I finally made it past all the walkers after the first mile. I am sure glad I practiced running uphill as there unexpectedly was a hill in the middle of the course and then a gradual incline again after mile 2. Many people got pooped out and walked up these portions but I continued chugging along greatly relieved when I reached the top.

After rounding the second hill I kicked in my energy reserve as I knew there was not that much further to go. It was down hill for a short bit and then a flat easy stretch to home! It was great as I unusually passed many other people in a running event.

Upon crossing the finish I checked again with my watch. As was my time in last weekend's 5 K, I completed the course in 28 minutes.

After the run I walked backward through the course to meetup with Harley and the dogs at about the mile and a 1/2 or 3/4 mark. I decided it was best Katie and Jake walked with Harley after the rabbit incident on Wednesday evening. There are bunnies at this park and I was not sure if any were going to run out to distract them. Additionally, with so many other dogs which they are not used to encountering on our trail runs, I was uncertain how they would react and behave. I did not want them pulling on the leash throwing off my balance nor cutting in front of me.

I am very proud of them. They behaved very well both during the fun run/walk and afterward. They enjoyed filling up on treats at the various vendors present. This was a special priviledge as we normally are very conservative on dolling out treats. They made a haul coming home with 2 big bags of yummies!

Registration fees for the event went to supporting the Seattle Animal Shelter which cares for abandoned, abused, lost, and injured pets.

Sunday, June 08, 2008

NF Quest Training Log 1 - the beginning

05-22-08 Thursday
1 hour walk with Michelle to hatchery

05-23-08 Friday
05-24-08 Saturday

Snoqualmie Valley Trail Fall City east; 2 hour 40 minutes; higher; hot and dry; No water on this portion of the trail as it is higher up and too high to climb down to the creek. I was worried the dogs were going to dehydrate and had to stop to give them a couple minute rests. After not finding water when we hiked over an hour we turned around and I desparately searched the areas off the trail. We found a mud puddle and then shortly after I spotted a creek down off the trail which we were able to access. Phew!

05-25-08 Sunday
East Lake Sammamish Trail run 1 hour 2 minutes; sunny evening

05-26-08 Monday
05-27-08 Tuesday
05-27-08 Wednesday

05-29-08 Thursday
walk in Issaquah Highlands 1 hour 10-15 minutes

05-30-08 Friday
05-31-08 Saturday
– complete day off

06-01-08 - Sunday
NF Challenge 5 K (3.1 miles); 5-10 minute warmup run followed by cool down walk with Kate; chest weight routine at gym
Walk with Harley on the Snoqualmie Valley Trail – 4 miles

06-02-08 - Monday
Ran 28 and a half minutes on Redmond ridge followed by a 12 minute walk
Early in the day spent an hour at the gym –arms weights/balance/abs

I made it up the hill on the Redmond Ridge trail and stopped at the top to walk the rest of the way as I was so exhausted. My pedometer must not work right because I ran for 28 and a half minutes and it said I did not even go 2 and a quarter miles. I know that is just wrong from my walking pace and the fact that I ran 3.1 miles the day prior in 27-28 minutes. Even after a brisk walk for 12 minutes following the run, the pedometer said I had not covered 3 miles. That is just wrong. I had my doubts about it as when I used it the other night and walked briskly for over an hour it said I had not reached 4 miles. Still I gave the pedometer the benefit of the doubt as I had gone off the trail for a couple minutes to go to the bathroom and walked uphill part of the way. Yet, nearly the entire way was paved which allows me to have a faster time.

Today is day 4 of the nose bleeds. All I was doing was sitting at the computer typing out a letter and blood started pouring out the same nostril (on the left). I am unsure if I touched my nose slightly…..maybe a passing rub grazing the top. Being tired and having another nose bleed was another reason (aside from the rain) that I chose to take it easy today. However, during that brief couple hours that it had stopped, I worked up the idea of going anyway. Tonight (shortly) I will head to water aerobics and then do my leg weight routine.

6-03-08 - Tuesday

The rain today has been pretty constant fooling me with a brief couple hour break, a peak of sun for a few minutes, and then starting back up when I was considering taking a run. I feel awfully guilty about not running today and not walking. The run last night was hard though. I was sore from the 5 K run Sunday and had tight hamstrings and calves. Again it was a run where I had to motivate and force myself.

Today is day 4 of the nose bleeds. All I was doing was sitting at the computer typing out a letter and blood started pouring out the same nostril (on the left). I am unsure if I touched my nose slightly…..maybe a passing rub grazing the top. Being tired and having another nose bleed was another reason (aside from the rain) that I chose to take it easy today. However, during that brief couple hours that it had stopped, I worked up the idea of going anyway. Tonight (shortly) I will head to water aerobics and then do my leg weight routine.

6-04-08 - Wednesday

First day without a nosebleed in 4 days!
1 hour at gym; leg weights
36-38 minute run on Redmond Ridge; bad fall as dogs chased a rabbit. Skinned my knees that bled; got back up and kept running.

06-05-08 Thursday

58 minute walk in Daniel’s ranch; twice on hill; water aerobics, chest weight routine; 4 minutes 5 squats on balance device

06-06-08 Friday

2 hour 35 minute walk on SVT behind Carnation PO

06-07-08 Saturday - rest day before event

Note: This log is not complete. I took only Saturday off the past 2 weeks but have not filled everything out yet. I either walk daily for an hour briskly or run for 30-38 minutes sometimes followed by a walk. I do weight training at the gym 3 times a week and water aerobics 2 times a week.

Thursday, June 05, 2008

NF Challenge - The results

It was a grey and cold morning for the first opening of June but fortunately no rain. I have to admit that I was secretly a little discouraged that nobody I knew showed up and there was a low turn out. After being in several events with hundreds to thousands of participants running, walking, rollerblading, or climbing for a cause, the small number of people attending our event made me feel insignificant and that people didn't care.
Ah well! Like other barriers in life, I can't let that defeat and stop me from my mission to make a difference.

In the 15 minutes prior, I took a little warm up run/jog so I could stretch my stiff and not yet awake muscles. When I returned I had a wonderful surprise awaiting that brightened my day. My friend Kate and her dog Cooper were waiting to greet me! Kate has attended this event with me in the past. It really meant a great deal to see her smiling face before the start and to see "Coop" again too.

Once we got started it was very cute. There were a couple of kids trying to keep pace or to keep up with me. One boy was determined in the beginning to be ahead of me. Yet, within a half mile he found out the importance of setting a pace and petered out (he did keep walking and running throughout the entire event to the finish). Then there was a young girl (maybe 9-12) that I could see out of the corner of my left eye running alongside me. She was running in a pink jogging suit so I imagined after a little while she was baking. I applauded her effort and was impressed that she kept up with me for quite a bit.

I have to admit it was a hard run. There were not any significant hills but it was early and I am not used to working my body out at that time (9 am). I was still stiff and felt as though I were an aunt running through a vat of honey. The particular trail we were on was not that interesting to me for running either. I was familiar with it as it is the starting route of the Seattle Super Skate I used to participate in (when I was able, rollerblading was much more preferable to me and I rather do that than run). Therefore, it really was a mental game and challenge to keep going.

I was so relieved when I hit the halfway point. "Ah........I am over halfway there!" I told myself once I had passed it. In running, completing over half the distance is a major mental hurdle and motivator. So if a 5 K is 3.1 miles, that means there was only roughly 1.5 miles left to go! Then you start to figure how much time it took you to run 1.5 miles and conclude it will only take you that much more. Even still, it takes more mental encouragement and will to keep you going. It is at those moments I try to reflect on why I am doing it.

Harley's mom and two of my former cohorts from graduate school had donated to my quest4NF. Someone believed in me and believed that we could make a difference. Someone was paying attention. They provided me with hope and instilled the belief that my efforts were not futile. I have to keep going and fight back for everyone who can't!

While I was trying to focus and harness this feeling to provide me with the drive to not give up, I passed my friend Kate and her dog Cooper. Knowing I am deaf and about deaf people, she was the only one to visually give me a deaf applaud to cheer me on (hands raised and wiggled back and forth in the air). This was just the extra umph I needed as there was a quarter of the course still to go. I answered back by cheering she and Cooper on and gave the same applaud.

The course was untimed so I used my own watch to time myself. There was not a clear starting line so I timed myself from where I began and back to the same place at the end which took me roughly 27-28 minutes. Sore and tired, I headed back out to cheer others and greet my friend Kate while I cooled down (this time walking ;o) ).

I was inspired by the number of young people (teens) and kids that participated. What a great way to start off life by working to bring about change and instill hope for others less fortunate.

After the fun run/walk there was a kids dash and hoola hoop challenge which was entertaining to watch. There was a boy and a girl who were amazing with the hoola hoops and I thought both of them would keep on going forever. Neither wanted to quit so it definately was a "challenge" or duel. The boy was older than the girl and therefore had some people coming over to distract him. He was still able to maintain composure but sooner or later he lost his rhythm for a brief moment which ended the battle.

During this time the local NF chapter also put on a wonderful bbq cookout which was very satisfying after a morning run.

Thank you WA NF Inc. for hosting this event for us and providing all the food for the cookout. It was very much appreciated!

Special thanks to my donors Melanie and Craig Breitbach, Matt Colgon, Cheryl Young, and my aunt and uncle Piron! Your contributions gave me the incentive to keep on pushing to get through this first event of my Quest4NF! :o)

The NF2 Motto - Never Give Up!

Sunday, June 01, 2008

Premiere Day of the Quest4NF

Today is the premiere of my quest4NF series of events which will begin with the NF challenge 5 K run. It ends up I did not need the bed shaker to wake up as I awoke an hour early to my nose bleeding profusely again for the 5th time since yesterday morning. (When I was getting ready to meet my friend Skip and putting my makeup on, all of a sudden blood started pouring from my nose.)

I have spent the last half hour in bed choking on my own blood draining down my throat while waiting for the darn leak to clot. My worries are of it starting to bleed while I am running which not be good. I will have to carry a packet of tissues with me just in case. If it does start, I will have to walk with my head back so that it will clot again. Yet, I said I was going to run and have been training to do so. Thus, I am going to hold to my word unless I absolutely have to stop due to this problem (it bleeds really bad everywhere like if you have a terrible runny nose). I have a bad problem with my nose running everytime I run no matter if it is really hot out. So I am hoping it does not instigate a nose bleed.

Aside from the nose bleed I was really lethagic and sore yesterday. I completely took the day off from walking and lifting weights at the gym to recover. I last ran on tuesday, last went to the gym on Wednesday, and last walked on Thursday so I don't know what the deal is. I did not wake super early and I was yawning all afternoon. Around 5 pm I stopped at Home Depot and was too tired to go into the store to make a return. Thus I fell asleep and took a nap in my truck for almost an hour!

Under the circumstances, I will really have to force myself to run this morning. I will take some iron and multi-vitamins again and hope that they help. I gotta go get ready!

Thank you sincerely to all who have donated to my quest so far! You are helping to provide motivation for me to run today and to not give up and believe I can make a difference! So once again, I am extremely gracious!

Here is the link again to my fundraising page to check my progress or generously make a donation: