Visit to Mt. Rainier - 35th Birthday

I like to visit Mt. Rainier at least every other year. I think I have been there about 7 times since we m0ved to the state of Washington. The

last time I was there over labor day 2004 before I lost the majority of my balance. I recall my dad and I walked across a glacier which I would no longer be able to do. Yet the mountain still calls to me and it was my wish to visit it again for my birthday (September 22nd).

I am pictured here the highest I was able to hike that day. Harley and I think I could have gone farther but the trail got steeper and more challenging which would have been incredibly difficult to walk back down and not to mention would take me a long time.

I could not help myself though and as our journey progressed I wanted to go higher up the mountain and further up the trail.

Yumi & I in front of Mt. Shuskan

Photo taken by Yumi's husband Dan Larrson on Sunday September 10th at the Mount Baker Wildness area "Artist Ridge" trail in Washington.

Team in Training Snapshot

Doctor, Doctors...It is that time again.

Time for a reality check again.

My eye appointment was a week ago and upon peering through my pupils and the back of my eyeballs, there is still evidence of swelling. Apparently the optic nerves are not tamed yet so I will continue to take the Diamox (which reminds me I forgot to take it tonight! Crap! I will be right back.......Good thing I blogged.)

Ok I am back...medicine swallowed. I am too tired right now and do not feel like writing.

This afternoon I go in for a followup MRI scan of the brain a few weeks early as I have been experiencing some headache problems. The routine over the last year has been to get them every 6 months. After treatment it was every 3 months because I was having side effects.

My last MRI of the brain was on April 10th. The last spinal MRI was July 29, 2005. I do not know if I will be getting the spine MRI today as I forgot to have the doctor order that until I thought about it yesterday.
After the MRI (within the next week or so when there is an opening and a captioner available) I will see the radiation oncologist.

Alright. Goodnight.

Shoes take consideration as well

Top left: Keens on the red sand of Sedona, Arizona.
Right: Simple Strappy Sandals with a formal evening dress.



Bottom left: Wearing TEVA leather sandals at the Jamaican market.

Since we were discussing poles let me share shoes. Shoes for the balance challenged take special consideration. Gone are the days of cheap shoes and high heels. You would not believe how hard it is to find a pair of comfortable shoes that look nice to wear with a formal dress!!!!! Fortunately I must have anticipated this struggle in my brain as a year ago I purchased some nice sandals on the REI outlet. The sandals are called "Strappy Sandals" by the brand "Simple" and are the absolute ONLY dress sandals I could find. I am SO glad that I bought them a year ago and never wore them until this June. The straps are velvet leather and the foot pads are a soft cushiony material with a form fitting sole. I went to SEVERAL stores trying to find something white to wear with an ivory dress to no avail! The shoes either had some type of heel, were a flip flop or open heeled shoe, or had a flat sole like a dang board! It REALLY was an impossible find. Since my ivory dress was long and covered my feet, I figured it would not matter to wear these black sandals.

When it is summer and hot, I really do LIVE in the sandals that you see me wearing in the Jamaica picture. I have been wearing them for 3 years and have found nothing else comparable. Unfortunately it looks as if the leather on the straps that fasten is starting to wear out (I have exposed them to salt water kayaking on a couple occassions). They are made by TEVA and I am waiting for them to make a similiar pair of equal comfort (no rubbing or iritation on parts of the feet), are light weight, and have a sole that literally conforms to and is shaped the same as the bottom of your foot.

If you look back in the blog posts to my earlier Arizona pictures you will see that I am pictured wearing them while posing with the skeleton of a Whooly Mammoth at the Mesa Southwest museum last October. I have not posted any yet, but I also wore these sandals exclusively while traveling in London and Italy prior to my treatment in 2004.

In the top photo are my trustly Keen Narhgee shoes. Aside from my REI backpacking boots (a gift in 2002), these are the most expensive shoes I own. It was quite a decision but when it boiled down to it there was no choice. Due to my balance issues I needed a lightweight trail shoe that conformed to my foot but in which I could also feel the contour of the ground through the bottom of my feet. Unfortunately the backpacking boots which I absolutely LOVED became difficult and a challenge for me to wear due to the thick sole and heavier weight. I could not feel the ground through the balls of my feet and thus sense changes in the terrain in order to adjust my footing for optimum balance and to prevent falls.

Now you may also wonder why I did not just by a pair of tennis shoes. Often regular athletic shoes do not have as good of a tread or grip the ground and terrain as well as a trail/hiking shoe. Those that do, run in the same price range as these shoes. Also, due to living in the Pacific NW where we get a good deal of rainfall I needed a shoe that was waterproof. That limits many options and the athletic shoes that have both good tread and waterproof ability sometimes cost more than these shoes.

My shoes I have all purchased at REI because I can taken them home and try them out and return them for a full refund if they do not work out. Most of the shoes I got at the outlet which has free shipping as long as I pick up the order.

Others I wear often:
Merril brown leather dress shoes (slip on but with a heel) for winter
Aididas Running Athletic Shoe (running and training to walk the marathon)

The "Pole" (me and my "sherlock" staff)

Photos taken by Harley Dufek
Top left is of me in July 2006 at Fort Worden State Beach in Port Townsend, WA. Top right is of me and two locals at a Jamaican craft market in Ochos Rios Jamaica in June 2006. Bottom right is of me on Hurricane Ridge in the Olympic Mountains National Park in Washington in July 2006.

Interesting links I found:

Fashionable walking sticks and walking canes
http://www.fashionablecanes.com/?engine=adwords!2920&keyword=%28walking+canes%29&match_type=content&gclid=CNyexvKVnIcCFQs3GAod5VUMsA

Free Leki Pole Offer
http://www.leisure-offer.com/rd_p?p=113082&t=1126&c=364035&gift=13145&a=13145-komperdell%20trekking%20pole

Trekking Poles
http://www.truelocal.com/topicsearch.aspx?q=trekking%20poles

Walking Poles and Mobility Aids (one of the first photos is the walker with wheels I want to try out to see if I can use to rollerblade again)
http://www.activeforever.com/departments.asp?Path=T17,0005&source=google-adwords

Here is another version (cheaper one) of a walker with wheels that I would like to try out
http://www.spinlife.com/category.cfm?categoryID=73&adv=goto&tar=walking%20canesv2&cm_mmc=Yahoo%20CM-_-Walking%20Aids-_-Walking%20Aids%20Page%20-%20standard%20keyword-_-cane%20walking&OVRAW=walking%20canes&OVKEY=cane%20walking&OVMTC=standard

If you want to buy a staff/hiking pole like mine, click the lighthouse link in the post title. The staff is made by the Audobon Society and is called the "Tracks" sherlock hiking pole. Harley bought mine at REI a few years ago as a birthday present but I cannot find it on their website. We bought a matching one at REI a year ago so both Harley and I can have one or he can use them both as hiking poles when I use my other pair.

The top of the sherlock staff can also be unscrewed and an SLR camera can be mounted on the top as a "on the go convenient tripod" for outdoor photography while on the trail. Currently the pole/staff is being sold on ebay through Mickie's Place Outdoor Gear for $49.99.

AIRPORT SECURITY GONE TOO FAR!!! - SEATTLE TO MINNEAPOLIS

Note: Please read my comment written today September 7th which inspires the photos and my latest post of today. I want you to understand while the new rule may be a minor inconvenience for many people, there are others with situations where new security guidelines have become a hassle and more than an inconvenience. Remember that I represent a minority of the spectrum that has things easier. I write this not only about my own experience and emotions but for you to become aware of other people for whom travel becomes a crisis and a major burden to deal with these issues. I am rather open about my NF2 and needs. Yet remember that there are those who are private and would not want to disclose their condition under these new security parameters or would even feel up to dealing with all of this. I know when I flew home from treatment just over two years ago I was sicker than a dog and would not have been able to tolerate dealing with this scenario. What happens then? The burden is then passed on to family members, friends, or loved ones that may not know what to do with the situation or be quite emotional themselves. It can be just as draining or more so for them. Do the law makers or the TSA consider this? Are all airport staff trained to recognize and accommodate these people without requiring them to give full and detailed medical disclosure? So far in my travel experience that answer is "no".

Alright this has nothing to do with NF2 really but the news has made me LIVID!!!!!!! My husband flew out to visit his mother in Minnesota and I had bought some nice gardenia smelling body spray from Bath and Body Works. Those who are fans of the famous store no that it is not cheap. So let this be a warning to all!

Seeing as it is one of the last things I gave him while packing he put it in his carry-on luggage. He also has his toiletries such as hair gel, shampoo, and toothpaste. In addition he was carrying a nalgene water bottle filled with water. Guess what??????? At the x-ray machine airport security made him throw out EVERYTHING - yup the brand new bottle of body spray I just bought, the toothpaste, the shampoo, the hair gel, and even the freaking water for cripes sakes!!!!!!!!

What is next?......tampons and lip gloss that you find in women's purses??? Gum? Mints? Breathspray?

Okay the tweezers, nail clippers, and grooming scissors were a little silly but we put up with it. This new rule (just who in the hell pulled that out of their arse?????) of anything liquid is pure hogwash!

Now back to NF2, cancer, or other such disease or disorders. For many of us we MUST have water with us at all times. Unless you travel first class which is VERY EXPENSIVE, you know that something to quench your thirst does not come around for at least 20 minutes or more after you have boarded the plane.

For this reason, I ALWAYS carry some type of LARGE water bottle with me and or fill my hydro-backpack. I often suffer from dry mouth and need to drink water continuously. I know that several cancer patients, people on prescription steroids (such as NF2ers after surgery), and several other disorders need to do the same. What are they all going to be required to dump out their water now and wait for the little cup? WTF????? Again, who invented this dumb ass rule?

Let me also say that things I commonly carry on with me for obvious reasons would be lip gloss and carmex, a small bottle of body spray as one can become kind of smelly on a flight, a small bottle of hand lotion (ALWAYS as I often have a serious dry problem of my hands where they can crack and bleed in changing weather), a small bottle of mouthwash to rinse my mouth, eye drops (THERE IS NO DISPUTING THAT AND MANY NF2ERS WILL AGREE), and often my toiletry bag in case my checked luggage becomes lost.

We just made a flight to and from Miami in June without any problem. I had all of the above in my carry on luggage. So when did this lame brain new rule go in affect?

Needless to say. I am "madder than heck"! Please pass the word. This has just gone too far!

Whose handwriting is that?

WOW! Again I have found a piece of paper with quotes jotted down and I stared at the paper wondering "Whose handwriting is that? Who wrote that and why do I have it?"

After flipping the paper over I observed that on the other side was some information for an online search about lab support regarding microbiologists. It definitely would not be one of Harley's papers.

Upon flipping the paper back over again and examining the list of authors who wrote the quotes I finally recognized the writing. While the handwriting is not the most beautiful it is still nice looking and legible. The letter shapes in the name "Martin Luther King Jr." and "Goethe" became familiar to me as I identified the writing as my own.

Now staring at the paper revealing my long lost handwriting it is as if looking at an ancient script written by a physical being that is gone. I can no longer identify with the handwriting and I wonder about the person who wrote it. I am amazed that it is my own.

This is not the first time that this has happened. Over the past year we have been doing lots of cleaning out and moving around of things. I have found old school notes that I have written and many tasks lists and diagrams. Each time I am always bewildered by my prior multitasking skills, things that I accomplished, and my good penmanship.

It is an odd sensation. When I see these things I feel as though I have known the person but I am not the person. This ranges from handwriting to pictures of me prior. It is like carrying a "symbiant" where I have that person's memories inside but I am a different physical being.

In case you are curious, here are the quotes I had written down years ago:

"Our lives begin to end the day we become silent about things that matter." -Martin Luther King Jr.

"There is nothing in which people more betray their character than in what they laughed at." - Goethe

"Life appears to me too short to be spent in nursing animosity or registering wrongs." - Charlotte Bronte

An interesting quote I want to remember

I have a plethora to blog about that it is not even funny. I've been busy with some fundraising efforts that at times emotionally tap me out or shall I say make me too emotional.

A good friend of mine with NF2 has been gracious to send me the ALDA (Association of Late Deafened Adults) newsletter over the past couple years or more. On the last page of the thick newsletter is a quote by a popular metaphysical author by the name of Joseph Campbell. I remember studying his works back in college when I took a class comparing the bible, mythology, and historical writings from other various ancient cultures.

Upon reading the quote again, it seems to fit with many facits and pursuits of my being.

"People say that what we're all seeking is a meaning for life. I think that what we're all really seeking is an experience of being alive, so that our life experiences on the purely physical plane will have resonance within our innermost being and reality, so that we can actually feel the rapture of being alive." - Joseph Campbell

Just my medical notes before it leaves my brain

Medical Update:

Blood test (CBC - complete blood count) retaken 2 weeks ago and everything is normal. I have an iron deficiency which is now resolved.

Week of August 6th and August 14th - constant head pressure (like my head was in a vice grip), pressure in the ears, very loud and noisy tinnitus, and CONSTANT headaches. Most often the headaches occured around the eyes and sinus area. Sometimes the headaches were in the back of the brain/head like sharp jabbing pains. I recall sharp shooting pains on the left side originating from the area surrounding the brain stem. On at least 4 occassions the headaches were bothersome enough that I could not sleep or focus if awake during the day. On 4 occassions I recall needing to take IB profen.

Possibility (just guessing) - the last time I had one of these headaches was on August 16th. I went swimming on both the 15th and 16th. My mask may have been on too tight to create a seal and thus greatly increased the ocular pressure. In addition, I swallowed and inhaled the pool water frequently. When swimming laps it is hard to not ingest water when I turn my head to the right shoulder to breath. Maybe my mouth on that side is not creating a good seal but that is where I am most comfortable turning my head to breath.

VERY IMPORTANT - the odd weakness in my left arm, wrist, and hand has returned over the past couple days. Strangely enough my strength has increased in my left arm from repetively loading it with bags of groceries and using the right hand to grip the handrail. However, on occasion it is difficult to even hold a large class of water or a water bottle in that hand as it begins to shake. This never occurs on the right hand.

I remember noticing the return of the shaking left hand/wrist on Friday or Thursday when I was holding a cereal bowl full of watermelon (not incredibly heavy). I was eating while watching a movie. While using the utinsel in my right hand I tried holding the bowl with my left soon it became very difficult. My left hand started shaking making it hard to hold the bowl and finish eating.

I have noticed this left hand oddity while holding something with my left hand. However, yesterday after standing at our fund raising table for a couple hours my hand starting to bother me without even holding anything. It starting shaking mildly and felt weak.

I hope to heck I do not have the beginning start of Parkinson's Disease!!!! I have read about it and recognize mild shaking appendages as the early signs. SOMEONE WITH NF2 PLEASE TELL ME YOU SOMETIMES GET SHAKING IN YOUR ARMS/WRISTS/HANDS. After going through cancer and suffering complications of NF2, I DO NOT NEED to get some other serious ailment without a cure!

I can't remember what else now. Sometimes I get used to these things happening that I start to think it is just normal and I forget to write it down until a couple weeks has gone by. Then if the condition worsens or persists I am like "Hey. I don't think that is supposed to be happening!"

Oh, the only other thing I can think of off the top of my head is lethargy those 2 weeks, sometimes just nearly passing out and needing a nap after eating a meal (perhaps a sugar rush), degradation in balance when waking (falling off the toilet or staggering to the toilet when I awake and either falling over and nearly so), and Saturday my balance was really off. It is the first practice (aside from the day I fell on my tailbone) that I felt I struggled to walk with a normal gait.

For anyone reading, sorry if this bores you or bothers you. This is the best place for me to record changes in my medical status so that I can recall it. My handwriting is atrocious so a written journal of these accounts is a no go. I do go back and read the blog to track my progress.

In Loving Memory of Grandpa Curly

On Friday August 11th, 2006, my grandpa Curly (De Grand) left this world to begin a new existence. He valiantly battled a blood cancer (plasmacytoma which progressed into a multiple myeloma) since October 2005. Last week in the peace of his home and comfort of his wife and friend God called him home.

In November 2006 I will walk a marathon (26.2 miles) in honor and memory of him. My efforts are in support of the Leukemia and Lymphoma society's Team in Training program. While training to complete a marathon those of us who are team in training members not only strive to increase awareness of blood cancers, but also help the society raise money to attain its mission to cure these types of cancers.

My grandpa was always a fast walker and LOVED the outdoors. His spirit lives in me and has been the motivation for me to believe I can accomplish something like this despite the hurdles that have been set in my path. I know my grandpa will be with me every step of the way.

Please click on the lighthouse link in the post title to see some photos of my grandpa I would like to share with you.

The following poem I would like to dedicate in memory of my grandpa who I believe is still with us.

Do Not Stand At My Grave And Weep

Do not stand at my grave and weep
I am not there

I do not sleep
I am a thousand winds that blow

I am the diamond glints on snow
I am the sunlight on ripened grain

I am the gentle Autumn rain
When you awaken in the morning's hush

I am the swift uplifting rush of quiet birds
In circled flight

I am the soft stars that shine at night
Do not stand at my grave and cry
I am not there

I did not die

- Author Unknown

Brain Port

This highly interests me. Some people dream of being able to hear again. Yeah that would be nice but what I truly crave and long for is the sense of balance I once had. Some days it is absolutely painful (emotionally) to know what I used to be able to do and not be able to do those things anymore. I watch all forms of life and ages.....from the smallest infant tumbling and learning to stand to an elderly person exhausting him or herself just to walk to the car or cross the street.

Balance absolutely fascinates me and I WANT IT! Balance is something in life that most people (those not balance challenged) take for granted and not think about. Just putting on a pair of underwear which was such a simple carefree thoughtless task before has now become something in my conscious mind and a reminder of where I am at.

After swim lessons the other ladies are able to whip on their clothes in a hurry. It never fails that I am most often the last person out of the locker room (if I get out of the pool at the same time) and I have not even showered or combed my hair. I was just trying to put on my damn clothes! To put on my underwear I have to hold on the wall with one hand and carefully slip each leg/foot in its appropriate openning. Then for the pants I must sit down on a bench.

Before I used to be able to run up and down stairs with ease often carrying a backpack or over the shoulder book bag. I have now adapted to loading my one arm with bags and grasping the handrail firmly with the other. Ah going down the stairs...well that is just plain terrifying and I must be extremely cautious (especially if I am carrying something in one hand).

Hiking.....I have always been a person to climb around on rocks and step toward the edge to peer over. I was always confident with my sense of balance and never worried about toppling over or falling of a ledge. Now walking on a flat bed of river rocks is a major accomplishment.

There are others: rollerblading, skiing, biking, waterskiing. There was so much more I wanted to do also.

But just the small things like putting on underwear and walking freely down the stairs without fear of falling. That would be really nice.

Lethargic

Wow! I am really tired today and I don't know why. Yesterday I took a day of rest from walking because I had my swimming class. Today is normally the day of rest but I changed my rest day to Sundays most weeks due to the swimming class. I normally do not get out to walk with the dogs early enough when it is cool and it is hard to walk most often after swimming due to the different coordination required. My brain becomes rewired differently and needs a day to adjust.

I am pretty sore too but I did not swim that hard last night. There was lots of rest stops and instruction between swimming to either end of the pool. I can't tell if I have water in my ears like hearing people. I wonder if other deaf people know if they get water in their ears? I will have to ask.

In any case, I went to bed with lots of head pressure. I tried clearing my ears to no avail. Additionally, I think I might have taken a double dose of my medication. I just could not remember. But I vaguely had a recollection of taking it an hour earlier. I was not sure if I was recalling it from another day. Still better to take a double dose than none as the medicine is trying to save my sight. If I did take a double dose it would make me lethargic so maybe that is what happened.

As to why my body is sore I don't know. I do remember having a dream of running on a beach carrying a heavy water bottle in each hand. While growing up I would have dreams of being chased or physically exerting myself to wake up tired. So maybe it is a combination of everything.

For those who might be kind of freaked about me over medicating, I was on that same dosage when I started the medicine in February of 2005. It did make me extremely tired back then. As the swelling of the optic nerves went down, I was lowered to the present dosage. I did stop for a month in March 2006 but the swelling returned and I have been back on the medicine since April 2006.

When You Least Expect It

Here is a funny story for you all:

I did not get much sleep last night even though I tried to go to bed early. It seems I woke up every couple hours so when 6 am rolled around I was dragging pretty hard.

This morning was our early practice for the marathon. Since our marathon start time will be 7:30 am and we will then proceed to walk 26.2 miles, our Saturday practices start at 7:30 am in order for us to adjust to this schedule.

Anyhow, it was a long practice and then I remained awake the rest of the day by visitng a friend on the way home and doing other errands. With the increase in temperature I became very lethargic when I got home and lied down for a nap about 4 pm. Apparently my nap turned into a 2 1/2 hour siesta as Harley woke me up when he came home. I would have continued to sleep otherwise.

When he woke me up he was laughing because here I was spralled out on the couch in nothing but my white cotton underwear and Team In Training shirt in front of the fan. IT WAS HOT so I ditched my pants!

While I was in this state keep in mind that even a bomb would not wake me unless it shook me off the couch! When I got up and looked at the end table next to the door and noticed a brochure with a man's picture on it. In blue ink was handwritten "Came to your door to introduce myself. Sorry I missed you!"

WHAT?????? SOMEONE WAS HERE WHILE I WAS NAPPING IN MY UNDERWEAR!!????

Because I am deaf people who know me always know to get a hold of me over the computer or text phone first so that I know to look for them and what time they are coming by. Also, I live in a rural area where our house can not be seen from the main road so I never have to worry about anyone I am not expecting coming over. Further, the dogs (even though I can't hear them) bark and most strangers figure it is a lost cause. For example, the mailman does not deliver packages.

So given all of the above, the last thing I expected was to be caught snoozing in my underwear by anybody besides Harley. LOL KUDOS to our visitor who appears to be running for a local office. He REALLY went out of his way in an attempt to introduce himself!

WELL THAT BITES! (Literally)

Gee I just noticed that my 3rd or 4th tooth crumbled apart. I can only guess that it either happened today while I was eating or while I was flossing as the gum area is bleeding.

Wow that material I read about teeth decay after chemotherapy and radiation was no joke! You expect all these things to happen instantaneously but these effects are long term. I read about it while going through chemotherapy 13 years ago and right on the dot the teeth problems started within 7-8 years but rapidly advanced following my radiosurgery treatment in 2004.

It is an ironic thing...dry mouth. Apparently my mouth gets to dry sometimes which increases tooth decay. However, I noticed myself drooling profusely today.

Yeah I have not told your that yet. I need to keep conscious and aware of many things. Drooling is one of them. If I am concentrating really hard on something and don't realize my mouth is not fully shut and especially if I happen to be looking down doing something like chopping vegetables or reading a book, I start drooling on myself like a baby.

A few times I have caught myself doing this in public and startled I quickly concealed my habit and looked around to make sure nobody noticed. Because of this drooling habit, I was thinking my dry mouth habit went away and I started doing behaviors not condusive to a dry mouth habit.

In particular, I had swallowed a large lump of rice from a Thai dinner about a week ago. I literally started choking as the lump became lodged in my esophagus. It felt like I was having a dang heart attack! If you have seen the sequel to the movie "Underworld" where Scott Freeman (who has become a lycan) tries to eat normal mortal food it is like that, I had an incredible pain in my chest and started gagging as I could not swallow the lump of rice. I could not fully lodge it from my esophagus either. For those who do not understand why I am such a slow eater, this is one of the reasons why. If I take too large a bite I either cannot chew with my mouth fully closed or I nearly choke when I tried to swallow such a massive bite.

Anyhow, the tooth must have fallen apart when I got brave and crammed some tortilla chips and snack mix with nuts down my throat. This evening my throat started to swell up and become sore. I then remembered the scratchiness of the chips I forced down the food tube. In the mist of munching and grinding on the crunchies, a piece of my tooth must have broken apart and I swallowed it!

This one is pretty bad and I am not sure what will be done. I was due to have a crown put on this tooth (yes I had a root canal done on it a few years back and never got the crown due to the expensive cost.....AHEM! LET THIS BE A WARNING TO YOU DJ TO GET YOUR BUTT INTO THE DENTIST AND CROWN THOSE DANG TEETH!)

I have a new dentist as of last summer who did root canals and placed crowns on the other teeth that crumbled apart last summer. Last time Harley was at the dentist he reminded him that I have one more crown to put on the tooth with an old root canal. I have a cleaning this month and was thinking about when would be the best time to schedule the appointment for (HOPEFULLY) the last crown I will need. I guess this incident has determined when I will be going in which will be a little earlier than I was thinking.

Gee, I remember when I was a little kid that I thought someone in their 30s was old. LOL then I became a teen and thought wow 30s must be the life! Now I am back to thinking I often feel very old in my 30s with all this stuff that happens. I keep falling apart and finding ways to piece myself back together and salvage what is left!

Running Update

If you have been reading you know my difficulty with running. Last spring I found out that I was improving my balance to the point that I could run at least 3 miles. One day I decided to run longer than that which worked out until my drive home where I got such a bad migrane and pain behind my eyes that I vomited something black (which doctors determined might have been dried blood from the nose bleeds I was having).

As it turns out my optic nerves were swelling again and I had to go back on medication. My one doctor told me that the running might be causing too much pressure to build up in my brain. Okay but I was determined to run my 3 miles in the Relay for Life (to which I collapsed for a short bit afterward.....tell ya later).

In June I fell on my tailbone and bruised it very badly. It has taken this long for it to heal so I have not been able to run at all. Then I began to experiment at Saturday practice over a week ago. I wanted to do 2 laps around the park and it seemed like many people were running around me. Therefore I sort of jogged in little spurts (for only about 10 minutes) but it made me dizzy.

On friday night (not sure exactly) Harley and I took the dogs walking but it was an hour before sunset and the squeeters were out. Thus we had no choice but to run on the way back. I just kept running and reached the open field before I thought I would (we had to run past the stagnant ponds and the creek which are prime breeding grounds for the beasts). I think I ran for about 18 minutes and then I walked.

Yesterday however, I did not have the dogs with me so I decided to try to go for a half hour run. I ran for about 32 minutes and walked the rest to make it an hour. Fortunately the weather has cooled a little and there was a slight breeze. I did not seem to have pain but the coordination for running was challenging. Yet I was able to run for 30 minutes which I have not been able to do for over a month!

Here is a link which explains one of the reasons I cannot run too far and why at certain times I have difficulty with night driving. The best way to describe my life in motion (walking, running, riding on a bumpy road) is like constantly viewing life through a home video camera while in movement. Sometimes (depending on what shoes I am wearing and the terrain) life is like living without shock absorbers (like riding in a car with no shocks). I first noticed this maybe a year or more ago while walking down to the mailbox. I could feel every little bump and pounding of my foot on the gravel drive. It was as if I lost any sense of shocks on my body and the vibration resonated through my spine shaking my skull and eyes.

http://www.tchain.com/otoneurology/disorders/bilat/bilat.html

I have learned to get used to this but yes it is very tiring at times. It takes a GREAT deal of energy and concentration to adapt and get through it.

Swimming Lessons

LOL Yes I am like a kid again starting over. I am taking swimming lessons and even with being deaf these are the best swimming lessons I ever had in my life. I waited a year to get into the class as they fill up fast and I was not quick enough to sign up (there is actually a waiting list). The classes are offered through Team Survivor Northwest which is a fitness program for women cancer survivors and patients. The mission is to keep women in a healthy life style and get them active again.

My classes are every Sunday at the Mercer Island pool and I greatly look forward to learning more from our excellent coach "Ed". There are two pools a) an olympic size lap pool and b) a shallower pool which is half the size. Those who are advanced swimmers practice laps in the olympic size pool. Most if not all of those women are training for the Danskin Triathalon in August with coach Mary of Mary Myer Fitness. The rest of us are in the beginner class and we are taught by Ed who if I understand correctly has been a collegiate swim coach. He is awesome! If you did not know better you would think he was born in the water and was a "merman".

Now some of you who have known me a long time might be sort of confused (especially if you grew up with me or know my history with the water). I have always been a water child and would have been happy had I evolved a set of gills. My favorite memory of the water while growing up is jumping off the ford river bridge in the icy ford river in early summer/late spring and also playing the rock race game at "Dut's" swimming hole. What is the rock racing game you wonder? LOL Well being a rural country bumpkin we were good at using nature to create things to do. We used to find a heavy rock (not too heavy but just enough to keep you at the bottom of the river) and race across the river bottom. Yes sometimes the depth must have been 3 to 4 feet over our heads! We would hold the rocks and scurry across the bottom of the river holding our breath to see who was the fastest. What a blast!

In college I took an aquatics swimming class (to meet one of my PE requirements) and then went on to take Lifeguard training, PADI basic open water (scuba) certification, PADI advanced open water certification, PADI rescue diver certification and specialties through SSI in night diving and low visibility. In addition, to get some more dive time under my belt, I volunteered as an assistant for the diving organizations PADI, IDEA, and NAUI.

So why the heck I am in the beginner class? The tumors destroyed a great deal of my vestibular function. I was absolutely shocked on the third day of treatment to almost drown in 4 feet of water at the hotel pool. I loved just playing around in the water and decided to close my eyes in the chlorine water and do a summersault. Well the summersault never happened and with my eyes shut I could not stand up nor find the surface. Desperate for air I had to finally open my eyes to determine why I could not find the surface in such shallow water. I was alone but thanks to my history with the water I was able to stop panic and think my way out of the situation.

I have tested it out in a pool over the past year. If I close my eyes I cannot complete one full summersault rotation but with a mask I can do 6 perfect summersaults in a row on one breath. The class is to learn the proper technique of swimming I never learned in order to be confident with my skills in the water. When I see water I still long to jump in but the incident brought forth some aprehension that I am working to overcome through greater confidence in my ability.

I love the water and I am not willing to give it up so easily! That is one thing I have learned about NF2. I have experienced many unexpected changes but with learning the right adaptations I can continue to have an active lifestyle.

OUCH! (like the way ET said it)

Photo taken by Harley Dufek in Ochos Rios, Jamaica on June 27, 2006 aboard the "Sinara" Trimaran.

Check out that right knee (the one closest to you in the picture). Actually it does not look too serious of an infliction in the photo but it ended up being pretty bad.

Seeing as our mission was to snorkel the whole time ashore in our first port of call in Labadee Haiti, I did not bring my walking stick with me. For one I did not want anyone to steal it while I was in the water, and secondly I did not imagine I would need it.

After an hour or more of snorkeling we decided we better take advantage of the free lunch provided at the island bbq as it would be awhile until dinner. In our hurry to be the last ones to grab some food before they shut it down, I tripped walking over the lumpy yet hard sand dirt road. Unfortunately the sand was rather abrasive due to its makeup of fine coral particles. Therefore it left my knee an awfully bloody mess.

What was even worse is that this happened in front of duck boat (busload) of people. Being on vacation I am sure they thought I was some fleusy who had a little too much rum! LOL I arrived at the bbq with blood dripping down my leg and had to get a cold glass of ice water and a napkin to clean it up (the ice water is safe in that spot as the area is owned by the ship and all the food and water is provided by the ship).

When I fell I did not imagine it would be such a nasty wound. Each time I went snorkeling it got worse and a big ugly scab formed with a rash around it when I returned home. It is gone now but a definite pink scar the size of a quarter is in its place to match all the bruises on my body.

Falling injuries are quite common on a daily basis but often I forget about them unless they are more serious such as when I fell on my tailbone down the stairs and falling on something abrasive such as coral sand. Bruises will show up on my body that I cannot account for as I get used to bumping into objects and falling as a normal part of life now.

My lastest falls (close calls) yet not as serious include: falling like a tree on top of our luggage behind the antique wood frame couch in our hotel room (I bruised and scraped my armpit area), slipping down the stairs again last Sunday trying to hurry to my swimming class (fortunately I did not reinjure in tailbone but formed a large bruise and scrape on my forearm), falling yesterday on a pile of tools (including some kind of small router saw that was fortunately turned the opposite direction) in the spare bedroom filled with things we have no place for, and today I did something on the stairs that hurt momentarily. I know I will have a bruise on my shin as I whacked it hard going up the stairs. The rest of the details and my other bruise incidents have left my memory.

ILY Snorkeling - (a sneak peak)

Photo taken by Harley Dufek on June 26, 2006 in Labadee, Haiti.
ILY- means "I Love You" in ASL.
Here is a sneak peak at my very first reintroduction swim in the ocean since the first day of my treatment in July 2004 when I went boogie boarding off Santa Cruz beach. The photo was taken in the waters off of Labadee, Haiti which was our ship's first port of call.

Although I needed assistance in and out of the water, I was thrilled to be able to snorkel and finally return to the underwater world which I love so much.

In the caribbean it is the law that you have a snorkeling vest so that is the black thing draped around my neck. I did not mind as I was able to float along over everything without having to worry about swimming. It was difficult at first to remember that I was not diving. The vest sort of gave me the feeling of a scuba BCD so every now and then I would forget and put my whole head under the water while still breathing on the snorkel. Hehe...nasty awaking swallowing that salty water!

I have not realeased the photos yet (I will soon) but I did suffer a significant facial paralysis for more than a year. At the worst point, I could not move half my face and I was concerned back then (not only of looks) but of whether I would be able to breath off a snorkel or regulator. For a long time I did not want anyone taking pictures of me and I did not want to show anyone photos of me. Thus the long absence of photography on the blog for a period of time.

Fortunately I have regained most of my face back (there is still some facial paralysis which you will notice in pictures of me.....most notably the framed formal anniversary photo I posted). However, I have gained enough function back now to breath on a snorkel with ease. I can even sip on my hydropack now (I am pictured wearing it in the Mayan Ruins photo of us) without having to hold my lips shut. We will see how it works with a scuba regulator when I am ready to try it out.

If all else fails, the snorkeling worked out great for me (with the exception of getting out of the water on shore.....I cannot stand up in water at my knee level or below!). We snorkeled for I think 2 1/2 to 3 hours in Haiti and then went from a boat in Jamaica and Grand Cayman which was nearly not long enough.

An addition to the link of the last post "Baffled"

In the last post I included a link which brought you to a page titled "How deaf people hear".

Unlike most deaf people, I and many others with NF2 hear nothing at all. Our world is completely silent except for the occasional tinnitus (ringing in the ears....noise in the head) that visits us.

Therefore, I would like to inform you how I have adapted or how to get my attention.

Waking up:
I would not even wake up if a bomb exploded outside my house (unless I felt the vibration which would have to be rather intense). Therefore I have a special alarm clock called a "bed shaker". LOL No it is not the same as those coin operated beds you see at cheap motels in the movies. A flying saucer shaped device plugs into my special clock. I put the saucer under my pillow and it vibrates the heck out of my skull when it is time to get up!

Phone:
I don't answer it because I cannot distinguish between a call for me over relay or a call for Harley. If it is for Harley and I answer it there is no typing to read on my phone and it is a dead end for me. I DO have a light flasher Harley installed to the ceiling of my computer armour. When the phone rings this light blinks and and off. If the call is for me and someone has called over WA Relay for the Deaf, an operator will type a message for me that I will read on a small screen on my phone. This special phone is mounted next to my computer and if I am at the computer I can call the person back right away.

Door:
It used to be that the dogs alerted me by barking but I can no longer here that. Since we live rurally we do not get many visitors so I do not have a light flasher for the door. I usually know when someone is coming by and I can watch for them. My computer is in the loft overlooking the front door. When Harley comes home, I can feel the vibration of him closing the front door through my feet (If I am in the loft). I don't wear shoes in the house (only barefeet or slippers in the winter). This also works if I drop something bigger than a piece of paper in the house. I can feel the vibration through the floor. Note: While on the boat my stateroom had a door flasher. There was a device or box that had a seperate light for each thing (phone, alarm, door, fire). When the lights would start flashing I would look at the box to determine if someone was at the door, if the phone was ringing, or if there was an emergency.

Getting my attention:
IT IS EXTREMELY IMPORTANT TO TAP MY SHOULDER GENTLY AND NOT TRY TO YANK THE DANG THING OFF! SOMETIMES I MUST FINISH WHAT I AM DOING AT THE IMMEDIATE MOMENT SO IT DOES NOT LEAVE MY MEMORY. If I am in somebody's way at the store I greatly appreciate a polite tap instead of being rammed in the rump with a shopping cart. Yelling and stomping as loud as you can would be futile since I hear nothing. If possible the best method is to flash the lights on and off as long as it is safe (meaning I am sitting down and not trying to walk down stairs or something). Deaf signers are also used to routinely getting each others attention by waving (small motion like you need something if the person is close by). Big waves are fine if there is a great distance between you and the deaf person.

Babies crying:
The ASL GLOSS "Ain't Got None!" Many people would find deafness in this case a blessing as I am NEVER annoyed by ANYONE'S cyring baby or any other loud disturbing sounds. ;)