Monday, February 27, 2006

The Silent Buzzer

For those of you who did not know, I am completely deaf. What that means is that a bomb could go off in the background behind me and I would be totally unaware the exception of feeling any applied force given off from such a explosion. So when I tell you that the "Sonic Boom" feature of my alarm clock has been rendered completely useless you know what I am talking about.

So how do I or other deaf folk wake up anyhow? Are we naturally trained or prone to just "wake up" when the time is right? Ahh no. LOL I have an alarm clock (yeah the sonic boom one) that has what is called a "bed shaker". No it is not like on the movies when you see X and B rent a cheap motel room in Nevada that shakes when fed a coin. Attached via a cord, is a little flying saucer shaped device the vibrates when it is time for the alarm to go off. It can either be set to "steady" mode or "pulse". I set it to pulse so I do not sleep through it thinking I am in a massage chair or in a long earthquake.

Anyhow, the idea is that you put this little flying saucer shaker thing under your pillow so that it vibrates your head in the morning. LOL I actually slept through it once in a dream of great havoc! In my dream my head kept vibrating and nobody believed me! It was awful! (In the dream) I kept telling doctors and nurses that something was wrong with my brain because it would not stop vibrating and was causing me headaches and rendering me unable to concentrate. They did MRIs on my brain and found things unchanged so it was a mystery. It was horrible! My head just kept vibrating. In reality this went on for just over an hour until I finally woke up thank God! It is no fun to have a vibrating head/brain for that long a period of time. Thus it normally does the trick to wake me up.

For the second time however, the dang vibrator (the flying saucer device) snuck out from under my pillow. On both occassions ironically, I was too tired the night before and had planned to wake early to type up my homework for class that morning. The first time I had woke 20-30 minutes before I was to leave the house to meet my carpool. This time however, I managed to wake up about 30 minutes earlier giving me enough time to type something from memory (al beit cheesy and half ass) from my receptive translation video I watched the night before.

When I awoke there was more daylight out. Confused I looked at the clock and realized I had slept a little over an hour and a half longer than I had planned to wake. Mad at myself and the clock, I double checked that I did indeed set it for AM and not PM. I thought I had remembered double checking this before I went to bed. The alarm was still enabled for the correct time. Angry, I wondered what the heck was wrong with the stupid clock. Everything was set right! Then I followed the cord to the flying saucer shaker where it ly gittering on the floor in the crevice between the bed and dresser.

If Harley was on night shift he would have been able to hear the shaker knocking between the wood of the bed and dresser. But, because he is on day shift, he leaves for work at 5:30 in the morning. Neither his stirring or turning on the lights wake me so I continue to sleep until I wake 3 hours later to the vibrations of the bed shaker.

There is also a light flasher option on the alarm clock (meaning that it can be hooked up to a lamp which will flash on and off when the alarm goes off). Seeing as Harley will not be home, I may connect it and try to see if that helps. I have been known however to sleep through lights. Most often I awake to the bed shaker. It is only twice now that it has fallen out from under the pillow. I must have moved around and knocked it off the bed.

Saturday, February 25, 2006

Medical Note to Self

Date: Feb 25th 2006
  • unexpected nosebleed (strong) while looking down reading a book after doing 15 pushups
  • after bleeding ceased, rode the exercise bike for an hour while reading
  • worked within the yard for a couple hours today and balance seemed good (wore lightweight hiking boots)
  • after coming in and eating dinner, I became lethargic and experienced increasing head pressure on the left side and a few sharp jabs of pain behind the left ear; the duration of the head pressure seemed to last up until riding the exercise bike
  • Before waking, experienced bad dreams which resulted in verbal shouting in my sleep and hitting my husband while unconscious/sleeping (fortunately not dangerously)

Date: Feb 24th, 2006

  • awoke to leg cramps in the lower calves (been having for about the past 4 or 5 mornings); This was my laziest week and I did not walk or exercise for 4 or 5 days due to everything that was going on this week. It seems to be crucial to my functioning and coordination to at least walk for an hour or ride the exercise bike every other day if not everyday.
  • experienced involuntarily muscle twitching and contractions of the lower area under the left eye both morning and evening (has been occurring for the past 2 months; cannot be felt but only noticed or seen when looking in the mirror
  • last filling performed at the dentist in the afternoon; face on the left side was frozen for about 6 hours and it felt difficult to talk
  • incessant fear of going blind continues; right eye sore and blurry in the morning and at various times of day. There are moments after lying down that my right eye experiences somewhat of a blackout or narrowing of the peripheral vision.....NOT FUN

Note: last MRI was performed on October 25 with the previous on July 25th. Recommendation was to have a repeat MRI within 6 months which would be April 25th. At the time of the last reading in October the left side tumor (smaller untreated tumor) appeared to show no growth and the right side tumor (vestibular schwannoma - the larger treated one) appeared to be stable and to cease swelling. It continued to show signs of necrosis but had not yet collapsed and was still pressing on the similar in size right side meningioma (both of which continue to distort the brain stem).

Some days balance seems to be ok or slightly improved and other days seem to be a complete washout (digression or lack of coordination). Oscillopsia is still present and annoying. Dealing with it on most days is achievable but some days I am completely overwhelmed.

On a positive note, my memory seems to be improving over the past few weeks to a month. I had experienced great difficulty with short term memory loss probably commencing in the late summer or fall. It continued to worsen and things that were once easy for me (such as spelling) became very challenging and I became very forgetful of things within a few minutes. I have noticed in my recent ASL assignments and quizzes that I have spent less time reviewing as I needed to prior. Surprisingly I have done just as well when only memorizing things in a shorter period of time (something I used to be good at...AKA - cramming).

Still though, I need to do little mental exercises to remind myself of things such as setting a video tape at the top of the stairs in my walking path so I remember to grab my class video tape downstairs. It helps to write notes to myself, utilize lists on paper, chalkboard and whiteboard, and to assemble or think about things I need the night before or at least put it all in the same spot.

Bad trends - I have been eating sugar (chocolate). I don't go nuts but I have had some everyday which is not what I should really be doing. The refined sugar is just too risky and not good for someone like me. Sugar has not only been found to feed tumors but it also tightens the muscles. Sugar consumption plus my lack of stretching and walking everyday most likely contributed to the leg cramps. I am still taking Diamox but consume potassium foods everyday and supplements on occasion.

Aside from consuming chocolate things, I have been really good about the caffeine. Once in a while I treat myself to a low sugar chai tea and if I absolutely need it, on rare occasion I have white tea which is one of the rarest and best forms of tea due to having the highest content of antioxidants of all the teas. I think the last time I had a diet pop was a can of caffeine free pepsi last mothers day at a bbq.

Saturday, February 18, 2006

A Good Dream Gone Sour - Lessons in Communication or a different interpretation?

I had a wonderful dream. I was diving with a group of people in a fantastic tropical underwater paradise. On land were majestic snow covered mountains. The scene was perfect and picturesque. The water was the bluest I had ever seen and the hues of the tropical fish were amazingly stunning. Visibility underwater and on land was grand. It was never ending and my perception went beyond what my eye could reach. Everything seemed perfect.

Then, one of our party ran too low on air forcing us to cut the dive short and surface. No problem I thought. Afterall, the water was shallow and conditions absolutely divine. I recall the group surfacing to look for the shortest route to shore. Even though the water was shallow and absolutely clear, the nearest shore was quite a distance away. At the time I did not think about how we had completely gotten off track. We were all still mesmorized by the beauty of our surroundings and in a jovial or childlike mood. The world and setting was our oyster.

We took a compass heading for the nearest exit (safe shore or in other words sandy beach). When we arove we did not want to leave the water and continued to snorkel and marvel at the mysterious and colorful species down below. One person who was particularly adept at underwater skill at one point became a tropical fish to mimic the behavior of a beautiful and amazing new species we found frolicking among the shallow coral.

Finally the sun started setting and we decided it was time to head back to our entry point. With all my gear on we headed up this steep hill on to the trail. At the top was a phenonmenal panoramic view of glorious snow capped mountains! I remember thinking "how could life get any better ?" (warm tropical clear water to dive in and fantastic scenery up above of high altitude snow covered mountains to goggle at). I was not exactly sure where we were but the place was amazing......a place that could only be found in dreams.

When everyone else gathered onto the trail the decision was to go right as that was the trail which hugged the shoreline. The other trail descended down into the valley on toward the mountains. In addition, an athletically built young man was carrying a scuba tank in a sling over his shoulder and heading from the direction everyone wanted to travel.

I followed without questioning as I was still captured by the spell the island had over me. The trail was perfect too....crushed gravel with no big ruts so it was easy for me to walk on. As I walked I was amazed to have no problems with my balance given the extra load of gear I carried on my back. I reasoned that the load was much lighter than cold water gear and the trail was perfect. Therefore I was not having difficulty.

We passed a plethora of historic and interesting ruins as well as fantastic beaches. Still in my bewilderment, I recall thinking how my parents would really enjoy vacationing there and deserved a break to soak in the pleasureful delights of my new found land.

As the sun was definitely setting now, it occured to me that we had been hiking for a while in all our scuba gear and still had not reached our entry point. It did not seem like we were in the water than long and we were now very far from where we exited. It was apparent we were lost or went the wrong way!

As we were literally at a crossroads of trails, the group pondered what to do. Which way to go? Not too far away there was a ranger's office and a couple people had spotted it, pointed, and started heading that way.

When we arove and met with one of the rangers through the office window, I noticed her shake her head and refer or point to the other side of the island. I am not sure but it appeared that we had ventured far from where we intended to be. However, I had noticed the trail ahead, some pictures on some signs, and a map on the side of the building.

I recall passing a pool at the facility where our entry point was. Up ahead on the trail I saw a picture indicating the same place. It was a closer route than going all the way back and through the moutain route. We did not have enough air to go the straight shot underwater.

When I tried to tell everyone my points it was as if they did not hear me. It was like I was no longer there. I was very frustrated as reality finally settled in. We had no food or water, we were wearing our scuba gear, and darkness was approaching fast. Now back in the land of my real world, I contemplated my personal challenges a) I have balance difficulty and I was carrying a load of gear on my back. We had already hiked quite a ways and I would be too exhausted to go back through a longer route. b) As soon as it turned to dusk and night, my balance would be totally shot making the journey even more diffucult and not to mention very slow.

I began to feel left out of the loop as when I voiced my concerns nobody seemed to listen. It appeared to me that everyone felt things were fine and I was just along for the ride. A major decision which could depend on our survival was being made and my input was not considered. It was as if I were in a magic bubble hovering over everyone. I could see what they were doing but I was completely forgotten about.

For me, I desperately needed to know the plan and to see a map. It is kind of fuzzy in my memory but had I been noticed, I get the feeling that people just kind of brushed me off and told me that I would be fine. In their world maybe they would be fine but in my world not as I had special challenges to consider!

Anxiety ridden now and not knowing what was happening and not wanting to walk in the dark donning my gear, as a last moment of deperation I ran to the picture of the trail map I saw on the outside of the building around the corner from the ranger window. Oddly enough, I was noticed or thought I was by two people. I pleaded with them to please get a map for me. I waited a long time and they never came back. When I went to investigate, nearly everyone was gone. They left me! They forgot I was there! I am not quite sure as I began to become lodged between waking and dreaming at this point, but I don't know if the one person I thought was left knew I was there. I think the person was speaking further to the ranger. I was in such a horrified state of shock of being left behind that I awoke at that point.

Thursday, February 16, 2006

Poem - The Battered Dream Ship by Edgar Guest
Oh, once I sent a ship to sea, and Hope was on her bow, But Time has brought her back to me and Wisdom's painted now; Yes, Time has brought me many things and some of them were good. And some of them were failure's stings I little understood.When Hope set forth the dream was fair, the sea was calm and blue, I knew men met with storms out there and had to ride them through; But still I dreamed my ship would ride and weather every blow, For Hope flings many a truth aside which Wisdom comes to know. The storms have come with bitter cold, I've prayed unto the Lord, I've had false cargoes in the hold and thrown them overboard; I've trimmed my sails to meet the gale, I've cut my journey short; With battered hulk and battered sail at last I've come to port. 'Tis not enough to hope and dream, for storms will surely rise, However smooth the sea may seem, 'tis there disaster lies; And I have learned from time and stress, that those who ride the wave, And come at last to happiness must suffer and be brave.

One year already!

Wow! As of yesterday (February the 15th), it has been one year since I started this blog!

Looking back and reflecting, it is hard to believe all that I have been through in the last year and a half. I definitely had some low points and questioned whether or not I was going to make it through. Well here I am. I may be somewhat battered but I am still here and I am still sailing.

In honor of the occasion, I am going to repost the poem I posted at the beginning of this blog a year ago which has become my philosophy and one of the underlying themes behind the title of my blog.

Thanks to everyone who has joined me on the odyssey, have been reading, who have been understanding, who have been supportive and just there for me in general. I feel truly blessed to have you along with me on this journey. Although my posts are far between at times, the odyssey will continue and I hope that you will keep sailing with me. God bless!

Love and my sincere appreciation, Beck (AKA: Rebecca :o) )