As mentioned in my previous post we took a trip toward central washington and southwestern Idaho (basically east and south of here) over my birthday.
Unfortunately due to my NF2 I can't do much driving nowadays. I used to love to drive. I drove for an hour from Moses Lake, WA toward Idaho and I started to "freak out". I am not sure how to explain it. I think maybe I am having an anxiety attack. I got to the point driving on this highway through rolling golden hills and blue sky where things seem to blend together and I was seeing mirages. Then it seemed as if my vision was getting blurry. I could not look to either side of me but straight ahead. After awhile I realized I had been white knuckling the steering wheel and I was so tense that my neck was starting to hurt. However, I kept going. I wanted to at least make it to Washtuca, WA. I was almost there when I had the last straw and needed to pull over. Everytime a semi or truck passed in the opposite direction I flinched and felt as if I would hit it head on. They were not so bad at first but the last one really scared me. My stomach dropped as if I had just taken a step off a bridge. That was it! It was time to pull over and pass over the keys.
We had a good time with my folks. We celebrated my birthday there a couple days early seeing I would be at my sister's on my birthday. Harley spent the morning fishing with my dad, we rode the boat over to visit my sister in-laws parents, and Harley went tubing. (hehe) My mom got a little sea sick because my dad started going in big circles and over big waves trying to knock off Harley. My mom and I went shopping for the three worst things to shop for but we had fun: swimsuits, sunglasses, and shoes (well that is a challenge.....it is an NF2 thing).
When we finally made it to my sister's (yeah 10 or 11 hours later because my dad likes to send people on long excursions even though there is a much quicker route) we got to meet her little "Spud" and boy was he fun! He is a Boston Terrier puppy and is 11 weeks old. We also got to check out their new home that they recently moved to (yes they are renting a new house that has never been lived in before!). It is a very spacious and pleasant 3 bedroom, 2 bath, 2 car garage in a newer neighborhood in Nampa, Idaho.
On my birthday we played mini-golf at the fun park. The two courses were really neat (like disneyland) with little old houses, bridges, fountains, rock formations, and the big head of some mayan or aztec dude. Afterward we got completely lost in the Boise corn maze and on both phases we ended up coming back out the entrance instead of the exit. Alas hunger overpowered us so we gave up and joined DJ (Michelle's boyfriend) for some dinner at Red Lobster. Hmmn those stuffed mushrooms and cheddar biscuits are always mighty tasty!
It was colder the last couple days we were there and Friday we had lots of wind so we tried to fly our kites in the farmer's field next to her neighborhood. LOL Unfortunately my cool looking and huge serpent kite was just that: huge and looked cool but flew like crap. The darn thing kept make a nose dive in the dirt each time we got it into the air. Thus Michelle and Harley kept having to chase the other end of it and launch it into the air for me. I could not move really because the ground was way too lumpy. If I moved while looking into the air I would have fallen over and my serpent would have probably buried its nose in the dirt again.
The ride home was long and difficult. I miss driving. Being a passenger is somewhat frustrating. I don't get car sick anymore but I end up passing out instead. If the road is at all bumpy (yes I am referring to the freeway) it is kind of disorienting and take lots of energy to see things normally. I try to read but it just becomes impossible after awhile and trying to focus completely fatigues me where I literally shut down. I basically can't keep my eyes open anymore and I end up passing out several times and forget what is happening or where I am. I noticed I was doing this passing out even on short drives to Boise and back. Yet those could have been because I was getting less sleep and trying to stay awake for a whole day.
We had a good trip and I am glad we got a chance to go out to visit. We figured now would be the best time because we don't know yet how the winter will be on the way there. We will now be heading down south on Monday for warmer weather in Arizona. It will be our first time visiting the SW region of the US.
Thursday, September 29, 2005
Rafting anyone?
We have briefly returned. Harley had some time off during my birthday so we took a trip to see my mom and dad in Moses Lake and then onward to Idaho to visit my sister and DJ in their new home.
A few days to a week before we were to leave (on the 18th) Harley wanted to take me white water rafting. Before the last year (or prior to my treatment) I would have jumped at the chance! I have always been one big on adventure and this is something I wanted to do for a long time. However, the ugly head of NF2 side effects post treatment seems to have planted the seed of doubt and anxiety in my mind.
All the rivers in Idaho are apparently are at a lax right now and only the rivers that had been dammed all summer and the floodgates now open hold the promise of a wild ride. One such a river exists in Yakima, WA and is a class III river. Initially I was probably asked about it over the summer and it sounded cool. Yet after a travel plan was set, 3 days before my 34th birthday, and after experiencing the difficulty with lifting my head out of the water after tubing a few weeks prior, anxiety set in and I found myself fretting in a state of emotional turmoil.
On the spot and needing to make a decision a day or two before we were to leave, I felt like I had been sucked into the movie "Final Destination". Here I had thought since losing my invincible shield and going through the drama of the last year, I had become accepting and at peace with impending death. However, when contemplating white water rafting, visions ensued of me bouncing around inside the raft due to lack of balance with my eyesight jiggling, going over a mammoth rapid and getting flung from the boat, and getting sucked into the rapids unable to lift my head out of the water because of total disorientation. Unlike, getting flung off of a tube on a calm lake, I pictured myself getting carried away in the current with my head in the water where it would be too rough for anybody to jump in and save me. Wow! What a terrifying vision! Thus it became my focus to live past my birthday and I was kind of resistant to going.
Weird, eh?
We could have gone on a slow river in Idaho but the day we were thinking of going it ended up rainy or cold.
A few days to a week before we were to leave (on the 18th) Harley wanted to take me white water rafting. Before the last year (or prior to my treatment) I would have jumped at the chance! I have always been one big on adventure and this is something I wanted to do for a long time. However, the ugly head of NF2 side effects post treatment seems to have planted the seed of doubt and anxiety in my mind.
All the rivers in Idaho are apparently are at a lax right now and only the rivers that had been dammed all summer and the floodgates now open hold the promise of a wild ride. One such a river exists in Yakima, WA and is a class III river. Initially I was probably asked about it over the summer and it sounded cool. Yet after a travel plan was set, 3 days before my 34th birthday, and after experiencing the difficulty with lifting my head out of the water after tubing a few weeks prior, anxiety set in and I found myself fretting in a state of emotional turmoil.
On the spot and needing to make a decision a day or two before we were to leave, I felt like I had been sucked into the movie "Final Destination". Here I had thought since losing my invincible shield and going through the drama of the last year, I had become accepting and at peace with impending death. However, when contemplating white water rafting, visions ensued of me bouncing around inside the raft due to lack of balance with my eyesight jiggling, going over a mammoth rapid and getting flung from the boat, and getting sucked into the rapids unable to lift my head out of the water because of total disorientation. Unlike, getting flung off of a tube on a calm lake, I pictured myself getting carried away in the current with my head in the water where it would be too rough for anybody to jump in and save me. Wow! What a terrifying vision! Thus it became my focus to live past my birthday and I was kind of resistant to going.
Weird, eh?
We could have gone on a slow river in Idaho but the day we were thinking of going it ended up rainy or cold.
Friday, September 16, 2005
The Drifter
In and out, in and out, in and out. I am constantly drifting in and out. Sometimes I wander about in a state of fog. Pardon my language and bluntness but BRAIN TUMORS REALLY SUCK!!!!!!
Don't mind me, I am just in one of my "states" on this emotional rollercoaster ride known as "NF2". It is the deepest emotional pain I have known thus far. Perhaps I am really awakening now to the reality that I have several "brain moles" taking up residence in my head. I guess it never really came out over the last 4-5 years unless I experienced high stress to the breaking point. Otherwise, I have done a pretty good job of pretending they are not there and I was just losing hearing.
The first year was sort of emotionally hard but I put on my "invincable shield" and kept myself occupied with various activities seeing as the moles had not become a major problem yet. Ahh, how young and foolish I was thinking that because I kicked cancer, nothing could touch me! I held out for many years thinking "Gosh I must be one of the lucky ones".
Well it is here now and it is having its last laugh on me. The emotional pain is so intense! Sometimes I feel so alone in my somberness and grief. I don't want to bring the people down around me and I don't want to seem ungrateful and like I am complaining to those who have it worse.
I will end here as I need to try to get some sleep. Everyday is a period of ups and downs. There are days where I feel it is emotionally tearing my soul apart (as I once described to a fellow NF2er.....like someone has put meat hooks into my chest and pulling hard enough to rip my heart out!) Thank God though that I am blessed with my husband and dogs who try to cheer me if they see me in one of my states. I feel very lucky in many ways but at the same time I am overcome with grief, fear, and a multitude of other discomforting emotions. This is more difficult than I had imagined. I would jump for joy if I could only just be deaf.
Don't mind me, I am just in one of my "states" on this emotional rollercoaster ride known as "NF2". It is the deepest emotional pain I have known thus far. Perhaps I am really awakening now to the reality that I have several "brain moles" taking up residence in my head. I guess it never really came out over the last 4-5 years unless I experienced high stress to the breaking point. Otherwise, I have done a pretty good job of pretending they are not there and I was just losing hearing.
The first year was sort of emotionally hard but I put on my "invincable shield" and kept myself occupied with various activities seeing as the moles had not become a major problem yet. Ahh, how young and foolish I was thinking that because I kicked cancer, nothing could touch me! I held out for many years thinking "Gosh I must be one of the lucky ones".
Well it is here now and it is having its last laugh on me. The emotional pain is so intense! Sometimes I feel so alone in my somberness and grief. I don't want to bring the people down around me and I don't want to seem ungrateful and like I am complaining to those who have it worse.
I will end here as I need to try to get some sleep. Everyday is a period of ups and downs. There are days where I feel it is emotionally tearing my soul apart (as I once described to a fellow NF2er.....like someone has put meat hooks into my chest and pulling hard enough to rip my heart out!) Thank God though that I am blessed with my husband and dogs who try to cheer me if they see me in one of my states. I feel very lucky in many ways but at the same time I am overcome with grief, fear, and a multitude of other discomforting emotions. This is more difficult than I had imagined. I would jump for joy if I could only just be deaf.
Thursday, September 15, 2005
NF Challenge
In case any of you are wondering....THERE WILL BE NO NF CHALLENGE THIS YEAR. Why? I have no idea really. All I know is that the NNFF (National Neurofibromatosis Foundation) changed their name to the CTF (Children's Tumor Foundation). My friend Kate and I were ready to run and maybe even a friend of hers. When I looked up the exact date it was not listed under Washington events on the CTF website. However, she saw it listed on the Northwest Runner website. LOL I started to wonder if I was going nuts! I also looked at the September schedule on the NWR site and saw it listed. I just could not figure it out. After careful inspection I realized the NWR had posted the schedule from a previous year and had the NF Challenge on a week day which just could not be possible.
For the past 3 years my family, friends, and I participated in the event to raise money for a cure for NF (both NF1 and NF2). I have NF2. Every year the funds are divided up between the two diseases and a researcher is awarded a grant for their project in continuing scientific advances toward the genetics and pathology of either disease. However, I had noticed a trend that more scientists seemed to be awarded for the research of NF1. Therefore, I had a portion of the funds I raised allocated specifically toward research of NF2 (The Adam Goodkind Fund).
This was a very important event for me as well as fun because it generally fell on or around my birthday so we would celebrate that too. No, I am not some great runner. The race meant a lot to me because of the fact that I was still able to run. Even if I did not enjoy the actual run (huffing and puffing along) I kept in my mind the people who could no longer do the same and thus I was running for them. It meant more to me then just handing over some money. It is hard to explain.
I used to also do the Seattle Superskate where one would rollerblade 25-26 miles to raise the necessary funding for Multiple Sclerosis Research. There would be moments in the course where my back would spasm and I felt great pain but when that would happen, I would think of the people who were never so lucky to be able to try out a pair of rollerblades or had their sense of balance and coordination robbed from them. Those moments are what kept me pressing on and it was an incredibly rewarding experience to cross that finish line (an honor). I did the Super Skate as long as I could (4 years) and then last year I sprained my ankle right after treatment. I thought maybe it would be possible this year but my balance declined severely and I have never been able to put the blades back on again. (anybody want to go for a ride in a wheelchair so I can try it out and push you along?)
In any event, I was fully prepared to run even though it is tremendous work now. The race had the option of a 3 mile and 6 mile. I always did the 3 mile. Last year I ran and I was so worn out that I think I collapsed when I crossed the finish. I remember my brother and dad being there.
I honestly have never run 3 miles since the treatment. The most I have done is about 20-25 minutes. It feels like I am running my heart out but in all honesty I think I am just jogging. It is hard because my eyes are bouncing up and down like I am running while looking through a video camera. Thus I have to look down at the ground and not the trail or anything around me. At the same time I have to concentrate all my energy into trying to coordinate my body and keep from tripping. I have run (jogged) recently (about 3 times over the past week and a half). I can make it half the distance that I normally walk. On a nice cool fall day it does feel somewhat good.
Special thanks to those who have participated with me over the years: Harley, Mom and Dad, Yumi and Dan, Chris and Darin, Kate, Michelle, Scott, and Denise. Also, I would like to thank the wonderful friends and family who could not be there but showed their loving support by helping to sponsor me and raise funds. I had an overwhelming response last year and I sincerely thank you from the bottom of my heart. I will never forget your gracious act of kindness! For those who have shown caring concern, accepted me as I am, helped me even when I was embarrassed to have help, and have just been there for me in many ways, I thank you too. NF2 is not pleasant but I thank God everyday for bringing people like you into my life. I feel very blessed!
I need to figure and sort all of these things out here but at some point if you are wanting to help with improving the chances or quality of life for someone with NF2, you can go to this website: http://www.advocurenf2.org/
The name stands for "NF2, Advocates for a cure". From the homepage you can learn more about NF2 and in the left column is a heading called "How to Donate". Since this is an indiscriminatory disease, anybody of any race and any age can be affected. Therefore there are organizations worldwide that you can donate to.
I personally like to contribute to the following fund:
• Adam Goodkind NF2 Research Fundc/o Childrens Tumor Foundation95 Pine Street, 16th Floor, New York, N.Y. 10055
For the past 3 years my family, friends, and I participated in the event to raise money for a cure for NF (both NF1 and NF2). I have NF2. Every year the funds are divided up between the two diseases and a researcher is awarded a grant for their project in continuing scientific advances toward the genetics and pathology of either disease. However, I had noticed a trend that more scientists seemed to be awarded for the research of NF1. Therefore, I had a portion of the funds I raised allocated specifically toward research of NF2 (The Adam Goodkind Fund).
This was a very important event for me as well as fun because it generally fell on or around my birthday so we would celebrate that too. No, I am not some great runner. The race meant a lot to me because of the fact that I was still able to run. Even if I did not enjoy the actual run (huffing and puffing along) I kept in my mind the people who could no longer do the same and thus I was running for them. It meant more to me then just handing over some money. It is hard to explain.
I used to also do the Seattle Superskate where one would rollerblade 25-26 miles to raise the necessary funding for Multiple Sclerosis Research. There would be moments in the course where my back would spasm and I felt great pain but when that would happen, I would think of the people who were never so lucky to be able to try out a pair of rollerblades or had their sense of balance and coordination robbed from them. Those moments are what kept me pressing on and it was an incredibly rewarding experience to cross that finish line (an honor). I did the Super Skate as long as I could (4 years) and then last year I sprained my ankle right after treatment. I thought maybe it would be possible this year but my balance declined severely and I have never been able to put the blades back on again. (anybody want to go for a ride in a wheelchair so I can try it out and push you along?)
In any event, I was fully prepared to run even though it is tremendous work now. The race had the option of a 3 mile and 6 mile. I always did the 3 mile. Last year I ran and I was so worn out that I think I collapsed when I crossed the finish. I remember my brother and dad being there.
I honestly have never run 3 miles since the treatment. The most I have done is about 20-25 minutes. It feels like I am running my heart out but in all honesty I think I am just jogging. It is hard because my eyes are bouncing up and down like I am running while looking through a video camera. Thus I have to look down at the ground and not the trail or anything around me. At the same time I have to concentrate all my energy into trying to coordinate my body and keep from tripping. I have run (jogged) recently (about 3 times over the past week and a half). I can make it half the distance that I normally walk. On a nice cool fall day it does feel somewhat good.
Special thanks to those who have participated with me over the years: Harley, Mom and Dad, Yumi and Dan, Chris and Darin, Kate, Michelle, Scott, and Denise. Also, I would like to thank the wonderful friends and family who could not be there but showed their loving support by helping to sponsor me and raise funds. I had an overwhelming response last year and I sincerely thank you from the bottom of my heart. I will never forget your gracious act of kindness! For those who have shown caring concern, accepted me as I am, helped me even when I was embarrassed to have help, and have just been there for me in many ways, I thank you too. NF2 is not pleasant but I thank God everyday for bringing people like you into my life. I feel very blessed!
I need to figure and sort all of these things out here but at some point if you are wanting to help with improving the chances or quality of life for someone with NF2, you can go to this website: http://www.advocurenf2.org/
The name stands for "NF2, Advocates for a cure". From the homepage you can learn more about NF2 and in the left column is a heading called "How to Donate". Since this is an indiscriminatory disease, anybody of any race and any age can be affected. Therefore there are organizations worldwide that you can donate to.
I personally like to contribute to the following fund:
• Adam Goodkind NF2 Research Fundc/o Childrens Tumor Foundation95 Pine Street, 16th Floor, New York, N.Y. 10055
Saturday, September 10, 2005
Learning to Swallow My Pride
Yesterday Harley and I stopped in at 5th Dimension Scuba (http://www.fifthd.com/) to pick up his new double tanks that needed a visual inspection and fill. For those who don't know, 5th Dimension is affilated with GUE (Global Underwater Explorers) who I respect and admire as the "gods" of research diving and discovery. They literally go "where no man has gone before".
Displayed triumphantly on the walls of the dive store are the most amazing photos I have ever seen! Why? Because the photos are rare and were not easily acquired as it took the utmost discipline, training, physical endurance, and concentration to obtain them! The pictures paint the beautiful and glorious alien world of the Mexican underwater cave system. It is a place where I could only visit in my dreams or hopefully after I have leave this earth.
It may not sound like such a task to the lay person to dive there but cave diving is one of the most dangerous and risky of sports. One must be in extreme physical conditioning, be highly trained in technical diving in overhead environments, and have an incredible sense of focus and skill. In addition, many of the underwater caves in Mexico are not easily acessible (meaning one must hike through an inhospitable and humid landscape to find the entrance to the cave). I am not talking about a bathing suit, mask, and snorkel either.....not even a recreational set of dive gear such as one might use on a tropical vacation. I am talking about carrying 4 tanks or more in a full exposure suit and equipment that the average sport diver could not even imagine!
The GUE divers were the ones to film the underwater documentary of the Britannic (sister ship to the Titanic). http://www.gue.com/research/britannic/index.shtml
As Harley was speaking to the man working at the shop, I tried to carefully and casually walk around the shop in a manner which would not reveal my imbalance. Heaven forbid I did not want to show my defect here! With careful focus and concentration I managed to move among the racks of dive gear without tripping or bumping into anything.
The man knew I was deaf as Harley signed to me where the bathroom was. That did not bother me. Initially years ago when I started losing hearing I was very self conscious about revealing my hearing loss to other divers let alone the tech divers! Now I really did not care about the deafness but the imbalance instead. It is like my kayak story. I just really hate letting it show when surrounded by more able body people who are experts in their sport.
Everything seemed to be going rather smoothly until it was time to leave. There were three cylinders there (all steel tanks which are the heaviest). Two of them were for Harley's new double tank system and one was my old tank which weighs 41 pounds. Harley grabbed his two and then nodded to me to grab mine.
Again I was caught in a moment of panic! He wanted me to carry this 41 pound cylinder out to the car? How was I gracefully or safely going to manage this? Afterall, it has been a year and a half at least since I dove! I guess I did not think about the situation when I first entered the store. I was just so focused on maintaining my balance and looking normal. Well fudge! What to do, what to do?
I never looked back at the man working there and for some reason after I got over the initial few seconds of shock, bewilderment, and problem solving of how I was going to accomplish this feat, I instictively and bravely grabbed my tank. I remember for a brief second feeling kind of mad...like "Hey I have NF2 and I am all screwed up! How do you expect me to carry this tank?".
I think I took a deep breath as I grasped my tank with my right hand. I could not carry it as strongly and confidentally as I did before. In fact, when I was younger and when I worked at a dive shop, I would customarily carry aluminum 80 tanks up on my shoulder (you got understand.....it has kind of been a macho sport and for a long time it was very rare that a woman became a diver...50s-70s).
LOL I probably waddled like a penguin with my tank at my right side in an effort to counterweight my balance. It was not that far...maybe 15-20 feet to get out the door. Immediately outside the shop were 2 stone/brick/cement steps. I stopped there and contemplated what to do, I HATE going down steps that don't have a handrail! Plus I was carrying a potential bomb that could explode if dropped in a very unfortunate manner.
I stood there for awhile not quite sure what to do while Harley carried his tanks to the trunk of the car. Maybe I was hoping that he would come and get mine but I did not really feel like waiting either. I felt eyes upon the back of my head and wondered what the man in the shop was thinking. It is not uncommon for men to be diver's and their wives or significant others to not be (especially in the realm of tech diving!). Still it bothered me not to show that I was fully able.
I looked over to my left where it looked like it could possibly be all level and no stairs (a wheelchair acessible route) but I really was not sure. Plus it was a long way to go (3-4 times the distance as opposed to the 10 feet it would take to make it to the trunk). If I went around surely the man inside would wonder what the heck I was doing. LOL
Harley looked back at me. The door of the dive shop was open and the man was by himself. I have no idea if he was watching us or not. A little embarassed I said to Harley "It is a little harder now because of my balance." Then I had an idea. These steps were pretty low and flat. I decided to set the tank down on the one step and support it with my right hand and then step down with my body. I did that for the two steps and made it to the trunk of the car.
It felt great that I was able to bring my tank out to the car but if I had not been put in the situation I think I would have let Harley do it for me. I had not thought about it in a long time. While we were driving away, I chuckled at myself for being so self conscious and worrying about what the guy at the store thought.
If I am ever able to dive again I have lots of work to do. I have lost a great deal of strength in my upper body but it is slowly returning. There was a point when I could not carry a bag of dog food anymore. As a matter of fact, it took loads of energy just to slide it onto the bottom of my dang cart at one time! However, after taking the three tanks out of the car and carrying them the short distance to the garage, I was able to carry the dog food (a 40 lb bag) up the stairs of the deck and into the house. Both tasks drained me but I managed and got them done! :o)
Displayed triumphantly on the walls of the dive store are the most amazing photos I have ever seen! Why? Because the photos are rare and were not easily acquired as it took the utmost discipline, training, physical endurance, and concentration to obtain them! The pictures paint the beautiful and glorious alien world of the Mexican underwater cave system. It is a place where I could only visit in my dreams or hopefully after I have leave this earth.
It may not sound like such a task to the lay person to dive there but cave diving is one of the most dangerous and risky of sports. One must be in extreme physical conditioning, be highly trained in technical diving in overhead environments, and have an incredible sense of focus and skill. In addition, many of the underwater caves in Mexico are not easily acessible (meaning one must hike through an inhospitable and humid landscape to find the entrance to the cave). I am not talking about a bathing suit, mask, and snorkel either.....not even a recreational set of dive gear such as one might use on a tropical vacation. I am talking about carrying 4 tanks or more in a full exposure suit and equipment that the average sport diver could not even imagine!
The GUE divers were the ones to film the underwater documentary of the Britannic (sister ship to the Titanic). http://www.gue.com/research/britannic/index.shtml
As Harley was speaking to the man working at the shop, I tried to carefully and casually walk around the shop in a manner which would not reveal my imbalance. Heaven forbid I did not want to show my defect here! With careful focus and concentration I managed to move among the racks of dive gear without tripping or bumping into anything.
The man knew I was deaf as Harley signed to me where the bathroom was. That did not bother me. Initially years ago when I started losing hearing I was very self conscious about revealing my hearing loss to other divers let alone the tech divers! Now I really did not care about the deafness but the imbalance instead. It is like my kayak story. I just really hate letting it show when surrounded by more able body people who are experts in their sport.
Everything seemed to be going rather smoothly until it was time to leave. There were three cylinders there (all steel tanks which are the heaviest). Two of them were for Harley's new double tank system and one was my old tank which weighs 41 pounds. Harley grabbed his two and then nodded to me to grab mine.
Again I was caught in a moment of panic! He wanted me to carry this 41 pound cylinder out to the car? How was I gracefully or safely going to manage this? Afterall, it has been a year and a half at least since I dove! I guess I did not think about the situation when I first entered the store. I was just so focused on maintaining my balance and looking normal. Well fudge! What to do, what to do?
I never looked back at the man working there and for some reason after I got over the initial few seconds of shock, bewilderment, and problem solving of how I was going to accomplish this feat, I instictively and bravely grabbed my tank. I remember for a brief second feeling kind of mad...like "Hey I have NF2 and I am all screwed up! How do you expect me to carry this tank?".
I think I took a deep breath as I grasped my tank with my right hand. I could not carry it as strongly and confidentally as I did before. In fact, when I was younger and when I worked at a dive shop, I would customarily carry aluminum 80 tanks up on my shoulder (you got understand.....it has kind of been a macho sport and for a long time it was very rare that a woman became a diver...50s-70s).
LOL I probably waddled like a penguin with my tank at my right side in an effort to counterweight my balance. It was not that far...maybe 15-20 feet to get out the door. Immediately outside the shop were 2 stone/brick/cement steps. I stopped there and contemplated what to do, I HATE going down steps that don't have a handrail! Plus I was carrying a potential bomb that could explode if dropped in a very unfortunate manner.
I stood there for awhile not quite sure what to do while Harley carried his tanks to the trunk of the car. Maybe I was hoping that he would come and get mine but I did not really feel like waiting either. I felt eyes upon the back of my head and wondered what the man in the shop was thinking. It is not uncommon for men to be diver's and their wives or significant others to not be (especially in the realm of tech diving!). Still it bothered me not to show that I was fully able.
I looked over to my left where it looked like it could possibly be all level and no stairs (a wheelchair acessible route) but I really was not sure. Plus it was a long way to go (3-4 times the distance as opposed to the 10 feet it would take to make it to the trunk). If I went around surely the man inside would wonder what the heck I was doing. LOL
Harley looked back at me. The door of the dive shop was open and the man was by himself. I have no idea if he was watching us or not. A little embarassed I said to Harley "It is a little harder now because of my balance." Then I had an idea. These steps were pretty low and flat. I decided to set the tank down on the one step and support it with my right hand and then step down with my body. I did that for the two steps and made it to the trunk of the car.
It felt great that I was able to bring my tank out to the car but if I had not been put in the situation I think I would have let Harley do it for me. I had not thought about it in a long time. While we were driving away, I chuckled at myself for being so self conscious and worrying about what the guy at the store thought.
If I am ever able to dive again I have lots of work to do. I have lost a great deal of strength in my upper body but it is slowly returning. There was a point when I could not carry a bag of dog food anymore. As a matter of fact, it took loads of energy just to slide it onto the bottom of my dang cart at one time! However, after taking the three tanks out of the car and carrying them the short distance to the garage, I was able to carry the dog food (a 40 lb bag) up the stairs of the deck and into the house. Both tasks drained me but I managed and got them done! :o)
Sunday, September 04, 2005
Pressure Cooker Head
It is gone now but I had the pressure cooker head again today. The worst episode was before we went on our trip.
What is pressure cooker head? LOL Well that is the name I came up with to best describe it. Have you ever accidentally hammered your thumb or slammed it in a drawer? Now take away the pain the just focus on the pressure......that pulsating throb under your fingernail driving you nuts for some type of relief of the pressure built up inside.
Basically that is how a pressure cooker works. It heats up and the pressure builds inside the pot. On the old style cooker there is a relief nozzle at the top and the metal piece that sits upon it rattles and whistles when your food is ready. I remember my mom taking a dishrag and slightly lifting the round metal piece that rests on the nozzle. When she did this, the pressure was slowly released to the point that she could open the cooker without the food exploding all over her.
As far as my head, I don't really feel pain like hammering your thumb but I feel the pressure build as if my head were a pressure cooker pot. Only there is not a way to relieve the pressure.
The episode today was not so bad. I was busy doing things and able to focus. Generally pressure cooker head is accompanied by mild to severe tinnitus which can get extremely loud. For those who don't know, tinnitus is ringing of the ears which takes on different forms and sounds. I probably hear it all the time but my brain has now associated certain sounds from memory to it. For example, I often hear a radio with a DJ's voice, background talking, or songs of someone flipping through stations or playing several different radios and stations all at once.
When it gets very bad it is as though all these sounds or voices are happening or screaming and there is no way to shut it off and have peace. At the same time you feel the pressure in your head and ears throbbing but there is nothing you can do.....can't even cry. It can be quite agitating but all you can do is wait it out.
I have closely monitored what I eat, my sleep, and what I am doing but sometimes it seems there is nothing that triggers it. I hate when this happens because it freaks me out that the tumors are growing in my brain. I was assured from some doctors that I would not feel if they were growing. I don't know if I ever believed that. Something is happening in there and it drives my crazy not knowing what!
When I first went into remission for Hodgkin's Disease I freaked out everytime I had a chest pain. This lasted for a few years. I was told that what was left in my chest (between my heart and lung) was scar tissue. The combination of chemotherapy followed by radiation made my bronchials very weak. So as they strengthened I would experience these "chest pains" which were similiar to the ones I experienced before being diagnosed.
Therefore, I am really hoping that this "pressure cooker head" means that the tumor on the right is starting to collapse instead of swell again and that the others are stable. I had an MRI in July and the waiting for this next one is extremely hard for some reason. I recall wanting another MRI within 2 weeks of the last!
Hopefully things are looking good when I get the next MRI in October. Right now I feel like I did the first and only time I tried to do the "Austrailian" version of rapelling. I remember the pit in my stomach and anxiety building as I walked down the rock facing the ground. At one point there was no turning back as I stood perpendicular to the rock looking straight down at the ground 90 feet below. I recall thinking "Oh crap! I am committed now and have to see this through to get to the bottom!"
What is pressure cooker head? LOL Well that is the name I came up with to best describe it. Have you ever accidentally hammered your thumb or slammed it in a drawer? Now take away the pain the just focus on the pressure......that pulsating throb under your fingernail driving you nuts for some type of relief of the pressure built up inside.
Basically that is how a pressure cooker works. It heats up and the pressure builds inside the pot. On the old style cooker there is a relief nozzle at the top and the metal piece that sits upon it rattles and whistles when your food is ready. I remember my mom taking a dishrag and slightly lifting the round metal piece that rests on the nozzle. When she did this, the pressure was slowly released to the point that she could open the cooker without the food exploding all over her.
As far as my head, I don't really feel pain like hammering your thumb but I feel the pressure build as if my head were a pressure cooker pot. Only there is not a way to relieve the pressure.
The episode today was not so bad. I was busy doing things and able to focus. Generally pressure cooker head is accompanied by mild to severe tinnitus which can get extremely loud. For those who don't know, tinnitus is ringing of the ears which takes on different forms and sounds. I probably hear it all the time but my brain has now associated certain sounds from memory to it. For example, I often hear a radio with a DJ's voice, background talking, or songs of someone flipping through stations or playing several different radios and stations all at once.
When it gets very bad it is as though all these sounds or voices are happening or screaming and there is no way to shut it off and have peace. At the same time you feel the pressure in your head and ears throbbing but there is nothing you can do.....can't even cry. It can be quite agitating but all you can do is wait it out.
I have closely monitored what I eat, my sleep, and what I am doing but sometimes it seems there is nothing that triggers it. I hate when this happens because it freaks me out that the tumors are growing in my brain. I was assured from some doctors that I would not feel if they were growing. I don't know if I ever believed that. Something is happening in there and it drives my crazy not knowing what!
When I first went into remission for Hodgkin's Disease I freaked out everytime I had a chest pain. This lasted for a few years. I was told that what was left in my chest (between my heart and lung) was scar tissue. The combination of chemotherapy followed by radiation made my bronchials very weak. So as they strengthened I would experience these "chest pains" which were similiar to the ones I experienced before being diagnosed.
Therefore, I am really hoping that this "pressure cooker head" means that the tumor on the right is starting to collapse instead of swell again and that the others are stable. I had an MRI in July and the waiting for this next one is extremely hard for some reason. I recall wanting another MRI within 2 weeks of the last!
Hopefully things are looking good when I get the next MRI in October. Right now I feel like I did the first and only time I tried to do the "Austrailian" version of rapelling. I remember the pit in my stomach and anxiety building as I walked down the rock facing the ground. At one point there was no turning back as I stood perpendicular to the rock looking straight down at the ground 90 feet below. I recall thinking "Oh crap! I am committed now and have to see this through to get to the bottom!"
"So Happy Together!" - The Turtles
Katie and Jake were just overjoyed when we came home Thursday night! They ran to the truck to greet us and escorted us to the front door.
On Friday they waited for me to get up and as soon as I came down the stairs they were outside the sliding glass doors stretching and looking in the window. They could not wait for me to come out and play! If it were up to them they would play and spend their time with me 24/7.
That afternoon they followed me around and hung out with me as I watered and deadheaded all the flowers in pots on the deck and hanging baskets. When I finished we played some catch before going for our evening walk.
Yesterday evening we met Harley at our usual trail when he got off work. Again they were estatic to spend this time together on our walk. We stopped to pick blackberries and I think they enjoyed feasting on the berries even more than we did! They are like little bears! Well technically you could say they are because their father was named "Bear". :o)
LOL It was rather funny because I had a calling from nature during our berry picking and had to step off the trail into the side of some farmer's field. Harley stayed on the trail and continued to munch on the berries but the dogs followed me right down to where I had to go. Another time I had to tie my shoe lace so I handed Harley the leash and they kept looking back to see where I was. They did not want to leave me behind!
I firmly believe that pets enhance our quality of life and enjoyment of it!
On Friday they waited for me to get up and as soon as I came down the stairs they were outside the sliding glass doors stretching and looking in the window. They could not wait for me to come out and play! If it were up to them they would play and spend their time with me 24/7.
That afternoon they followed me around and hung out with me as I watered and deadheaded all the flowers in pots on the deck and hanging baskets. When I finished we played some catch before going for our evening walk.
Yesterday evening we met Harley at our usual trail when he got off work. Again they were estatic to spend this time together on our walk. We stopped to pick blackberries and I think they enjoyed feasting on the berries even more than we did! They are like little bears! Well technically you could say they are because their father was named "Bear". :o)
LOL It was rather funny because I had a calling from nature during our berry picking and had to step off the trail into the side of some farmer's field. Harley stayed on the trail and continued to munch on the berries but the dogs followed me right down to where I had to go. Another time I had to tie my shoe lace so I handed Harley the leash and they kept looking back to see where I was. They did not want to leave me behind!
I firmly believe that pets enhance our quality of life and enjoyment of it!
We're Ba...ck!
We got back Thursday evening but I have not had a chance to really write. In the midst of trying to unpack, put things away, cook some healthy menus, and clean the laundry, I have gotten involved in catching up on my email and reading and commenting on other blogs.
I am really behind on blogging. I need a data recorder like Captain Picard...one that I can plug into a computer and will type for me. I only write a tiny fraction of what I actually think about. By the time I get around to actually writing, there are so many things that have happened and a plethora of new thoughts the have entered my mind.
Therefore, until Harley downloads some of the photos to my computer I will just tell you about the highlight of our trip which was on the last day.
Our journey on Vancouver Island Brittish Columbia ended at the wonderful town of Nanaimo on the east side of the island. We arrived there on Wednesday and not only found this town picturesque but also more reasonably priced than the other places we had visited on the island. In addition, there are SEVERAL activities to do there!
Wednesday evening we enjoyed a nice walk along the waterfront and harbor which was fantastic for someone with balance issues. The trail is paved and flat so it can accommodate bikers, rollerbladers, wheelchairs, walkers, and dogs on a leash. Boats and seals as well as the historic part of town can be admired from this trail.
On Thursday morning we rented a double kayak from "The Kayak Shack" at the north end of the town and harbor (near Departure Bay and across from Newcastle Island). I was excited but a little nervous to reveal my issue. I try to not let it show. Deafness is one thing but I really have a fear of showing my imbalance when it involves a sport.
When it was time to put the boat in I had no choice.Walking down to the water and climbing into the boat I could manage if it was calm and the rocks were not too slippery. However, carrying the boat down to the water over the uneven terrain and rocks was another. It probably was only 15-20 feet but I knew myself and I did not want to end up dropping the boat and damaging it or falling over and seriously damaging myself.
When the lady motioned for us to carry the boat down I thought to myself in a panic "God I can no longer play this game of pretend! Crap! What do I do? Do I swallow my pride and admit my weakness thus asking for help or make an ass of myself and possibly ruin their boat?"
How does one adequately and tactfully tell someone what is going on or ask for help? This has happened to me on at least 3 other occasions that I can recall. One time, when I was at my weakest, I realized I was not going to be able to lift some soil into my truck at Home Depot. Never in my life has that ever happened. I mean I look fine, young, and strong but alas I knew from trying to slide the bags on the cart that I was never going to be able to lift them the 4-5 feet into the truck bed. Thus, sheepishly and somewhat embarassed I had to ask at the register for some help lifting them. What made it worse is that it was a woman who put the bags in the truck for me.
So returning to the kayaking, in a moment of desperation I blurted out "Ah, this may seem kind of silly but could you please put the boat in the water for me? I am recovering from a brain tumor and my balance is off right now." She was very nice about it and complied and assisted me when we returned.
Now to the adventure! It was phenonmenal! We felt as though we were on a National Geographic Expedition! In the kayak the oscillopsia wasn't too bad (oh yeah you don't know about that yet so sometime I will write a post about the meaning of the term). The water was very clear up there but probably poor visibility for the area due to the warmth of the water and plankton right now. To give you an idea, I could see about 15 feet down into the water and spotted several jellyfish and sea stars. In addition, it was low tide so we saw tons of red, purple, pink and orange sea stars clinging to the rocks with the sea lettuce, rock weed, and other algae (seaweed).
We paddled along the northern tip of Newcastle Island where we spotted several raccoons out for a shellfish harvest during the low tide. Many of them ran to hide among the large rock formations but a mother and her two young kept hunting along the shore, allowing us to view them as we floated by.
The plan was to paddle around Newcastle Island and go swimming on one of the sandy beaches but we were too enticed to kayak more north d toward some distant rock outcroppings in search of harbor seals. When we finally made it to the rock outcroppings I thought it was going to be a bust but Harley heard one and saw it sitting on a rock. He pointed it out to me just before it decided to go for a dip.
That was pretty cool but nothing compared to when we made it around the rock outcropping. First we saw a couple and then there was a huge herd playing in the water as if it were a community seal beach! There were probably around 50 seals! We kept our distance as required by law but they swam out and monitored us on our boat at a 20-40 foot distance. They were literally all around us and were swimming in the same direction that our boat was moving.
We drifted between the outcroppings and noticed a lone rock with beige, white, and gray humps on it. As we floated by this isle we discovered the rock was for the seal pups and a couple of adult seals kept watch of us in the water so that we did not pose a threat. For some reason there was one lowly pup left alone on another rock and we floated unknowingly within 15 feet of him.
The seals continued to swim with us until it was clear we were heading too far from the comfort of their rocks. We passed by a rock full of cormorants and other birds. Some of them took off like jets across the water (similiar in flight to canadian geese).
Mother nature called so we continued to head north up the main shore in search of a safe pullout. When we checked the time we had to head back as we had less than an hour to return the boat and catch the ferry back to the mainland.
The water was rough in the section back towards Departure Bay. What a ride! You have to head straight into the wave because if you hit a wave from the side the boat may tip. Gosh this was such a rush! The view and perspective from the front of the boat is intense! Again the oscillopsia did not bother me because my focus and concentration were on the front of the boat, the wave ahead, and paddling like the dickens!
As we paddled our hearts out a sailboat cruised by with full wind in its sails and leaning at its side. Basically they were having a good ride too as I am sure they had a few knots going!
The ferry from Horseshoe Bay on the mainland was in the distance so we had to hurry up to try to beat it while crossing the small channel. On our way in we saw a woman attending a zodiac for a slew of divers down under and we continued to see the float plains coming in and out.
Nanaimo made quite an impression on us so we will be back for more!
I am really behind on blogging. I need a data recorder like Captain Picard...one that I can plug into a computer and will type for me. I only write a tiny fraction of what I actually think about. By the time I get around to actually writing, there are so many things that have happened and a plethora of new thoughts the have entered my mind.
Therefore, until Harley downloads some of the photos to my computer I will just tell you about the highlight of our trip which was on the last day.
Our journey on Vancouver Island Brittish Columbia ended at the wonderful town of Nanaimo on the east side of the island. We arrived there on Wednesday and not only found this town picturesque but also more reasonably priced than the other places we had visited on the island. In addition, there are SEVERAL activities to do there!
Wednesday evening we enjoyed a nice walk along the waterfront and harbor which was fantastic for someone with balance issues. The trail is paved and flat so it can accommodate bikers, rollerbladers, wheelchairs, walkers, and dogs on a leash. Boats and seals as well as the historic part of town can be admired from this trail.
On Thursday morning we rented a double kayak from "The Kayak Shack" at the north end of the town and harbor (near Departure Bay and across from Newcastle Island). I was excited but a little nervous to reveal my issue. I try to not let it show. Deafness is one thing but I really have a fear of showing my imbalance when it involves a sport.
When it was time to put the boat in I had no choice.Walking down to the water and climbing into the boat I could manage if it was calm and the rocks were not too slippery. However, carrying the boat down to the water over the uneven terrain and rocks was another. It probably was only 15-20 feet but I knew myself and I did not want to end up dropping the boat and damaging it or falling over and seriously damaging myself.
When the lady motioned for us to carry the boat down I thought to myself in a panic "God I can no longer play this game of pretend! Crap! What do I do? Do I swallow my pride and admit my weakness thus asking for help or make an ass of myself and possibly ruin their boat?"
How does one adequately and tactfully tell someone what is going on or ask for help? This has happened to me on at least 3 other occasions that I can recall. One time, when I was at my weakest, I realized I was not going to be able to lift some soil into my truck at Home Depot. Never in my life has that ever happened. I mean I look fine, young, and strong but alas I knew from trying to slide the bags on the cart that I was never going to be able to lift them the 4-5 feet into the truck bed. Thus, sheepishly and somewhat embarassed I had to ask at the register for some help lifting them. What made it worse is that it was a woman who put the bags in the truck for me.
So returning to the kayaking, in a moment of desperation I blurted out "Ah, this may seem kind of silly but could you please put the boat in the water for me? I am recovering from a brain tumor and my balance is off right now." She was very nice about it and complied and assisted me when we returned.
Now to the adventure! It was phenonmenal! We felt as though we were on a National Geographic Expedition! In the kayak the oscillopsia wasn't too bad (oh yeah you don't know about that yet so sometime I will write a post about the meaning of the term). The water was very clear up there but probably poor visibility for the area due to the warmth of the water and plankton right now. To give you an idea, I could see about 15 feet down into the water and spotted several jellyfish and sea stars. In addition, it was low tide so we saw tons of red, purple, pink and orange sea stars clinging to the rocks with the sea lettuce, rock weed, and other algae (seaweed).
We paddled along the northern tip of Newcastle Island where we spotted several raccoons out for a shellfish harvest during the low tide. Many of them ran to hide among the large rock formations but a mother and her two young kept hunting along the shore, allowing us to view them as we floated by.
The plan was to paddle around Newcastle Island and go swimming on one of the sandy beaches but we were too enticed to kayak more north d toward some distant rock outcroppings in search of harbor seals. When we finally made it to the rock outcroppings I thought it was going to be a bust but Harley heard one and saw it sitting on a rock. He pointed it out to me just before it decided to go for a dip.
That was pretty cool but nothing compared to when we made it around the rock outcropping. First we saw a couple and then there was a huge herd playing in the water as if it were a community seal beach! There were probably around 50 seals! We kept our distance as required by law but they swam out and monitored us on our boat at a 20-40 foot distance. They were literally all around us and were swimming in the same direction that our boat was moving.
We drifted between the outcroppings and noticed a lone rock with beige, white, and gray humps on it. As we floated by this isle we discovered the rock was for the seal pups and a couple of adult seals kept watch of us in the water so that we did not pose a threat. For some reason there was one lowly pup left alone on another rock and we floated unknowingly within 15 feet of him.
The seals continued to swim with us until it was clear we were heading too far from the comfort of their rocks. We passed by a rock full of cormorants and other birds. Some of them took off like jets across the water (similiar in flight to canadian geese).
Mother nature called so we continued to head north up the main shore in search of a safe pullout. When we checked the time we had to head back as we had less than an hour to return the boat and catch the ferry back to the mainland.
The water was rough in the section back towards Departure Bay. What a ride! You have to head straight into the wave because if you hit a wave from the side the boat may tip. Gosh this was such a rush! The view and perspective from the front of the boat is intense! Again the oscillopsia did not bother me because my focus and concentration were on the front of the boat, the wave ahead, and paddling like the dickens!
As we paddled our hearts out a sailboat cruised by with full wind in its sails and leaning at its side. Basically they were having a good ride too as I am sure they had a few knots going!
The ferry from Horseshoe Bay on the mainland was in the distance so we had to hurry up to try to beat it while crossing the small channel. On our way in we saw a woman attending a zodiac for a slew of divers down under and we continued to see the float plains coming in and out.
Nanaimo made quite an impression on us so we will be back for more!
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