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
Wednesday, August 30, 2006
Monday, August 21, 2006
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.
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.
Wednesday, August 16, 2006
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
I am not there
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 a thousand winds that blow
I am the diamond glints on snow
I am the sunlight on ripened grain
I am the sunlight on ripened grain
I am the gentle Autumn rain
When you awaken in the morning's hush
When you awaken in the morning's hush
I am the swift uplifting rush of quiet birds
In circled flight
In circled flight
I am the soft stars that shine at night
Do not stand at my grave and cry
I am not there
Do not stand at my grave and cry
I am not there
I did not die
- Author Unknown
Monday, August 07, 2006
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.
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.
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.
Saturday, August 05, 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!
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!
Tuesday, August 01, 2006
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!
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!
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