Wednesday, December 27, 2006
Our power was restored last Thursday evening but we are still without internet access presently. I am at a library at a nearby town and need to leave so I will make this short.
We traveled down to Veneta, Oregon to spend Christmas with my parents and sister. Friday we got caught in the most horrific rain the whole drive down. We drove back up yesterday afternoon/evening and got poured on again! I swear they were the largest rain drops I have ever seen!
Shortly after we returned home the rain turned into snow. A friend staying with us left to spend the night at work and phoned to inform us that another tree had fallen across the road but he was able to drive around it. Hence I did not leave the house all day until it warmed and the roads were better. I am hoping that the weight of the melting snow is not going to bring down more trees and knock out our power again.
The wind storm last week brought about 5-6 trees down on our property (2 of the trees were very large and tall hemlocks). Fortunately the wind blew them in the direction AWAY from the house! It was a really nice Christmas present to have power restored after 8 days without.
Ok. I gotta go. No internet, tv, or news while living in the sticks so I cannot check the weather forecast. If you need to get a hold of me right away you can call WA state relay for the deaf at 1-800-833-6384 and then provide the operator my home phone number. Leave a message and I will try calling you back. You can still email me and I can read it when I am somewhere with access. I just cannot type back as I need an ergonomic keyboard like I have a home. Laptops are IMPOSSIBLE for me to type on (complications from NF2 which have compromised my dexterity and left me with numb finger tips which make me feel as though I have club fingers).
Sunday, December 17, 2006
This will be short as it is INCREDIBLY difficult to type on this lap top. It is the only means of communication I have for this evening to the outside world. The typing problem is due to the dexterity complication I have developed from NF2. This is probably taking me 10 minutes or longer to type this. I already worked VERY hard to write a nice note in someone's online guestbook but deleted accidentally (just before finishing with my dANG NAME!!!!!).
oK i NEED TO SEND THIS AS I ALMOST DELETED this too by pressing the wrong button.
Mom & Dad, we need to cook our turkey for christmas. it is thawing out in the freezer. hope to see you next weekend if we can get gas.
Monday, December 11, 2006
(Sigh) I was not quite sure what to title this post but I do want everyone visiting this site to read this so you are educated and not ignorant. Ignorance can be very hurtful to the parties one is ignorant about.
Tonight was a particularily trying ordeal (very emotionally draining) with NF2 that I could have never imagined going through. In a flash I was completely stripped of my dignity. I suppose it could have been worse but I went through what NO person with a disability, impairment, illness, injury, or handicap should ever go through. Yes tonight without doing anything wrong or provoking or harming anyone or anything, I was forced in a position to prove that I have NF2, that I am deaf, and that I have brain tumors. Isn't that awful?
As you know by now if you have taken the time to read this or know me, you know that I am rather open about my NF2. Yet there are people with NF2 and other ailments and disorders that like to keep that fact personal from public and the strangers. It is their right and that privacy should NEVER be challenged!
Here is what happened. I am having a hard time writing about it without shaking because I was very emotionally charged and unprepared to be harassed or be put into this kind of scenario.
About 4:50 pm this evening I was walking out of a very popular warehouse store where I regularily shop and frequent. When I had parked before entering the store, there was not a vehicle next to me on my driver's side. Now however, there was a truck in the space next to me and I could not fit the cart or open the doors between our tow vehicles. I pulled out slightly so that I could freely open the double doors of my truck and load my groceries without touching the truck next to me.
As I was unloading my cart, a traffic cop on foot approached and tried speaking to me. I had no idea why he would approach me or what he wanted. Not wanting to be held up so I could get home in time before Harley would go to work, I faced the man and told him that I was completely deaf so he would have to write down what he wanted to say to me. Instead of complying, he kept speaking to me which frustrated me. Again I told him I was deaf and he needed to write down what he wanted to say. (I may have even told him 4 or 5 times.) I basically thought in my mind "You idiot. If you can't follow instructions them I am not going to waste my time with you." Thus realizing time is a commodity, I turned and continued to pack the groceries/boxes in the backseat of my truck so I could more my truck out of the way before anyone decided to drive though the far off corner of the lot where I was parked.
While I was loading the groceries he approached me again and wanted to speak to me. Even more frustrated now I was thinking to myself again (Big Sigh) "WHAT PART OF COMPLETELY DEAF - NO SOUND DO YOU NOT UNDERSTAND?????!!!!!!" I cannot be sure as I cannot hear anything, but it seemed like he got frustrated and motioned or said to look at him when he was speaking (secret that I want you to wipe out of your mind for all time.......I can lead read a little........If you don't want to get on the bad side of me and piss me off majorly..NEVER ask me that!). Like I said, I am only guessing that is what he said. I am not 100 % sure. So based on my thought or reception of the information, in my mind that is what he said to me. My response as I loaded the last item from the cart to the truck, "NO! You must comply with how to communicate to me as I am deaf!"
Keep in mind that my truck door was open this whole time. Once I finished loading I began to scan the parking lot for the caged area to return my cart. FINALLY, he took out his paperpad and pen and wrote to me. On it the words burned into my brain and stung like a sharp dagger into my heart "Are you drunk?"
Now how in the hell am I supposed to feel about that!? Here I was minding my own business just getting groceries and not hurting anyone. I actually felt really good when I walked in the store and thought how good I was walking today and that training for the marathon really helped me alot. I was proud of myself for accomplishing this and coming so far. Then some jerk totally deflates my balloon by asking me if I am a drunkard!!!!! I totally could not believe it! I could not withhold my feelings and I told the officer "Oh my god! I have never been so offended in my life!!!!! If you had any idea what I have been through you would not ask me that! I am completely livid!"
In disbelief and surging with anger, I told the officer I had to put away my cart. When returned I asked him if a drunk person would put their shopping cart away. There were innumerable carts scattered everywhere in the lot and on the plant medians as other shoppers had not been considerate enough to wheel their cart into the proper designated spot about 3 car lengths away. I was still really mad and could not believe this was happening to me.
I asked the officer for his name and badge number to which he would not comply. I could not see his name on his uniform as it was covered by a yellow reflective safety vest. The only words he wrote to me during this whole time were "Are you drunk?" "Your ID?" I would not give him my ID until he provided me his name and badge number. We seemed to have a little war at this as neither of us would give in. I told him that I would not give him my ID until he provided me his name and badge number first. I said if I gave him my ID that he could just blow me off and never provide his information in return.
I wanted to write down on his pad and he pulled it away. As a new deaf person two years ago I also had a run in with a cop who would not let me have HIS paper. Thus I always carry my own and went to my truck to get it along with a pen. When I returned he still refused to provide his name and badge number. This made me really angry and I told him that I was going to file a civil complaint against him and write about this incident on my blog which is read internationally. Failure to comply to my request? No problem I let him know. I looked at his hat which read "Issaquah Police" and wrote it down. Then I documented the time, date, location, and place where this all transpired.
While this was happening, the man parked in the truck next to me had returned to his truck. I noticed and got his attention. I had told him that I needed him to be my witness as I was being harassed by this cop who did not believe I had compromised balance due to brain tumors and that he thought I was drunk. (Yes I had already told him that I suffered from brain tumors and NF2. He had never heard of NF2 and I guess he did not believe me.)
The man was really nice and helped facilitate the communication by writing on my writing pad to me. The officer wanted a phone number of someone to call to verify I had NF2 (AND WAS NOT DRUNK). Because I use the phone VERY RARELY (the bulk of my communication is over email and instant messenger and I had stated this), I only knew Harley's cell phone number. Seeing as it was a half hour before he needed to leave for work at this time, he did not answer his phone (I imagine he was taking a shower and getting ready).
I was at a total loss after that on what to do. At some point I got out my hiking staff out of the truck and showed it to the officer explaining that I use it when going places where I have difficulty, am looking at scenery, or making many stops as in the Seattle Street Scramble I had participated in the day prior. When I shop I have a cart which helps me with balance.
It was only when I was requested to move the truck that I realized my keys were gone! The officer took my freaking keys either while I was loading stuff or when I put the cart away!!!!!! He would not give me keys back to me and I had to have the good samaritin witness man I pulled aside move my truck. The officer was willing to give my keys to a stranger (not the owner of the truck) and not to me (THE ACTUAL OWNER OF THE TRUCK)!!!!!!!
We were at a crossroads. The officer would not give my keys back, never provided me his name and badge number, and would not believe I had this condition. The poor witness man (who knows if he needed to be somewhere) was also held up trying to help. He did the bulk of the communicating and I am very GLAD he was there! He wrote to me asking if there was anyone else that he could call. The officer did not use his phone. Instead the witness man made these calls on his own personal cell phone. My mind was totally blank! I could not think of anyone's number! He asked for my parents number and I stated that actually my parents JUST moved to Oregon and I did not know their number (it is written on a piece of paper next to my computer with their new address).
We actually have a friend in Issaquah but I could not remember his cell phone number as I seldom communicate over the phone. I gave him a number to try but it was not a working number. I could not remember the correct number. Then I remembered I had a hard time finding their house at night and that the directions might be in the glove box. I was thinking maybe the number would be on their too. I went to go find it and I had so much crap stuffed in the glove box (all necessities I feel) that I could not find it efficiently. I was upset, bewildered, and had to reach over to the other side of the truck over the center console to try to access it. I thought to myself, "Well crap this is not going to work." To access it more efficiently I would have had to walk around to the passenger side of the truck in the dark which would show my impaired balance more.
Then a light bulb went off in my head! I remembered that I still had my Team in Training Emergency shoe tag from the Seattle marathon still attached to my shoe. They could try calling our program coordinator with the Leukemia and Lymphoma Society who could verify that I had indeed walked a marathon, was a cancer survivor, and had NF2. On the tag was also written my condition "NF2". Why would I be wearing this if I was not affiliated with the Team in Training and why would I lie on there about having NF2?
They could not get a hold of her but her name and organization was on the voice mail message. At least it was worth a try and another phone number as I had no others with me or in my brain. Then my witness man was talking to somebody. I thought maybe he got a hold of her. The cop wrote to me that his sargent was coming down. After all this, he still did not fully believe I was not a drunk and would not surrender the keys to me. He had gathered my name by my communication with my witness and my ID tag (keep in mind I still did not know his name or his badge number). He had written to me that he was not familiar with my condition and asked if it affects my balance. I then had to explain my condition and that tumors growing on my auditory nerves also affect the balance and facial nerve that branches out from the auditory nerve. I smiled for him to show him my facial paralysis.
When the witness man finished the phone call I asked if he got a hold of Megan with the LLS. He told me that he had not be was talking to his mother who is an IV nurse at Good Samaritin Hospital. While we kind of had an offshoot conversation about that (as I am quite familiar with needles with all the medical stuff and MRIs I get) the sargent showed up.
The witness man was very nice and when the sargent showed up and spoke with him he was free to go. The witness man (sure wish I had his mailing address to send him a thank you....I do have his name and number) shook my hand and wished me a Merry Christmas. He had stood out in the cold damp weather and rain with us for 20-25 minutes. Who knows if he had to be somewhere. In a very busy month, approaching dinner time, and in the cold rainy weather he stayed by my side to help and was a "good samaritin".
The sargent seemed accepting of everything and by then I had the chills from the weather and started to shake. The unnamed officer finally wrote that he was sorry and learned a lesson. I was not sure what to say but was really glad this ordeal was coming to closure.
He wrote to me that he was responding to someone's complaint to investigate if I was drunk. Apparently the complaint was when I was entering the store. The annonymous person said I was touching cars when I went in the store which is really bizarre as I don't touch other vehicles in parking lots for fear that I may set off car alarms and never know. In fact, as I walked briskly to the store entrance I thought of how much my walking has improved and that I actually felt somewhat like a normal person. I thought about what a great thing training for the marathon has been for me and I was proud of how far I came and had walked a marathon! I was pleased with being able to walk fast again! I was totally exhilirated before entering the store.
When the officer wrote to me that someone complained about the way I walked I was puzzled and totally sapped. It was as if someone shot a hole through my chest. To me that was more upsetting then the whole ordeal I just went through! I searched the back of my mind and knew for certain I did not touch or lean on any cars as I was walking in. I was not even by cars. I like to have wide open space when I walk and had parked in the back of the lot away from the conjestion of compact vehicles. The only thing I can figure is when I gassed up a the same store establishment. There is not a large space between the gas pump and one's vehicle. Therefore, I do ease slowly out of the truck and do put my hands on MY OWN TRUCK for stability while I am gassing up. There was a problem with my pump and when I entered my card twice kept telling me to reinsert the card. Therefore I had to get the attention of the attendant and walked maybe 10 feet within that narrow space where I would have had to put my hands on the side of the truck and pump for stability.
Of all the damndest things, eh? You would think with the massive crowds (that is why the store hired a traffic cop) and the approaching holiday season, that people would be busy enough already with their minds focused on other things. Instead though, some ignorant sap took the time to critisize a disabled person and assume that I was a drunkard.
I had a short conversation with the officer and sargent. I told them for future reference it is wrong and offensive to assume somebody is drunk. There are lots of sick and disabled people (more sick and disabled than I). I continued that it is not the right thing to do to assume someone is drunk (ESPECIALLY WITH SOME ANONYMOUS STRANGER'S WORDS). I stated that it would be more appropriate to ask someone if they are ok. From there one can smell if there is alcohol on their breath and investigate further. I told them that I did not have a disabled sticker because I felt there were other people who could use it more than I could. I posed "If I can walk a marathon, then somebody else needs that space more than I do."
I did not realize how emotionally upset I was until I left the scene. By the time it was over with it was too late to make it home to see Harley off to work. I tried to go to another store I wanted to stop at but I was so upset that I missed the turn and ended up going a direction where I could not turn around until I was far away. Instead I went to the party store to look at things for our holiday party next weekend. As you would figure the dang holiday stuff was in the front of the store.
As soon as I walked through the door I started to have a breakdown. It was so humiliating! I turned my back to the cash registers and focused on the dog printed gift boxes next to the door. I can't produce tears but I can do the motion and I imagine the sounds of bauling. I tried to hold it in and focus on these printed boxes but it was not working. I was about to lose it any minute. Nervous of making a scene, I belined to the back of the store where I hoped nobody would notice or hear me.
LOL I actually hid out in the costume section. I stared at fake armor and lady liberty costumes for a long time (I have no idea how long). I was weeping without tears and kept telling myself to pull it together. I tried frantically to find costumes or something that would cheer me up all the while I kept an eye out for other customers to hide my shame from.
I wasted time looking at Christmas cards even though I already sent mine out. I was desperate to escape what happened to me and find something uplifting. For some reason or another I thought about my non-production and the tasks that needed to be done. Why was I at the store? I thought about my grandpa and other people who have been through difficult things and a voice in my head said "Stand back up! Life must go on!"
I went to look at the plates and cutlery and I noticed a shadow standing in the space next to me. It was a salesperson. Geez and I was trying so hard to be left alone. I told him I was deaf and did not understand him but the young boy really seemed to want to help as he did not go away. I thought "Oh alright, I will play" and asked him where the plastic flute glasses were. LOL Oddly enough he led me to the other side of the store where the costumes were. When we got there I kind of chuckled and said "Oh. You must have misunderstood me. I meant the champagne drinking flutes". Thinking back this did cheer me! LOL It was rather cute.
He led me to the correct spot and I looked at the glasses and the different party plates. A couple minutes later he returned. I told him I had a list and was just checking things out. Surprisingly he had a little paper pad in his apron and pen. Wow! That is really cool I thought.
Unfortunately the store was closing and was not quite sure if I was ready to drive home yet. I went to Ross next door which is open an hour later. In Ross stuff was scattered all over and there was too many people in the store that I could not hide. I became paranoid of eyes looking at me and the scenario played in my mind of people looking at me like I was a freak or drunk and somebody calling the same cops. I could not shake my apprehension and feeling of suffocation. I kept thinking about whoever that person was who reported me as a drunk to that cop. I just wanted to go home and be away from everything (to hide in my home where I am comfortable).
I made the drive home and unloaded the groceries. I began to break down again as I was carrying things into the house. When I parked the truck in its spot I turned off the ignition and just sobbed.
It is the darndest thing to not produce tears. You just sob and hyperventilate but your eyes stay dry. You don't feel the nice wet salty liquid running down your cheek. In a way you feel like a fake or an actor pretending or betraying the true emotion. You don't know exactly when to stop or when it ends as you cannot cry your eyes out without tears. I kept feeling around my eyes in hopes of feeling some tears.
Even though I shedded no tears, it felt good to release all the pent up emotion alone in my truck. I don't live in a neighborhood so being in the warm dry truck was a safe haven where I could baul/sob and nobody would hear or judge me.
When I emerged little Jake was standing outside of the truck door. He heard his mommy's cries and was there waiting to cheer me when I came out. As soon as I stepped out of the truck and petteed Jake, little Katie came over too to put a smile on my face. They know when I am sad and they are always there to lick my wounds and heal me again.
Friday, December 01, 2006
It was odd. The first part of the trail was a nice path of compressed bark which was free of water and mud. Then at one juncture I wanted to take the group on an alternate route or loop. I had forgotten about the melting snow and the trail ended up being water logged and marshy like the mud lake trails in my grandpa's cranberry bog and cedar laden property in Michigan.
Interestingly my shoes turned into water boots which I happily skidded and tromped over the melting ice, snow and water. When I crossed the bog trail the field ahead of me changed into a perfect crytalline white blanket of snow complete with ski tracks over the rolling hills.
Somehow poles appeared in my hands and I began to glide along the trail in my water boots at an intense pace. The further and faster I went, the feeling of nordic skiing returned to my memory or being. I glided down the hills in a perfect tuck in my water boots as I once did on my light carbon fiber skis.
It was an absolutely amazing feeling! I wanted to go faster and faster. My lungs burned from the cold air but every breath made me feel more alive than ever!
I am not sure but perhaps my boots actually turned into skis in the dream. I remember being amazed that I could ski again and could vividly recall every detail of the skill.
When I reached the bottom of a large hill that I glided down in a tuck with tremendous speed and percision, I came to a sign where the trail went two directions. It was at that moment that I realized I was no longer on the Redmond Ridge but transported back to my favorite cross country ski trail on the Days River.
You see, before rollerblading, before diving, before waterskiing, before hiking in the mountains, cross country skiing was my love and my passion! I remember my grandparents gave me my first pair of skis. From there my parents encouraged me to use them and to compete in the UP State Games. My parents used to have land in Upper Michigan and that is what I used to do....ski all around our property and our neighbors'. My favorite time is when the snow would get very hard and the fields would be lit up from the moonlight and stars.
On weekends our family would ski the Days River trail and later I would return often on my own for the pleasure of solitude in the woods and competing against myself.
There was a moment in the Seattle marathon while crossing the I90 bridge that the memory of skiing visited me. I am not sure why. I wanted to go really fast. I wanted to have on a pair of skis.
I still have my skis (the last pair I owned). They hang in my house with my downhill skis like trophies on the wall of our stairs. I have not wanted to let them go. Not yet anyways.
After the marathon it has crossed my mind a couple times if I could possibly ski again. Prior, I had marked it off the list due to my poor balance. However, after this dream and the feeling I had in the dream I wonder. Like hiking, with nordic skiing you use poles. I may not be able to tackle going down the insane hills at heart pounding speed that I once did, but perhaps I could enjoy skiing on a flat trail. It would take practice but I have the memory of the technique with me.
The feeling in my dream was so incredibly exhilirating that I crave to ski again! The weather today reminds me of a good day skiing. There is some blue ski mixed with clouds, the air is crisp, the temperature warm, but still snow on the ground.
This definitely is a good way to enter the month!
Happy December! Always keep hope and find a way to go after what you would like to achieve! :o)
Wednesday, November 29, 2006
Hey I just completed one of the top 20 marathons in the nation! On Sunday November 26 I walked the 26.2 mile course of the UW Medicine Seattle Marathon in 6 hours 47 minutes and 39 seconds (06:47:39).
I started a blog about it titled "Rebecca Dufek's Seattle Marathon Blog" and that is where I have been this past month. Come visit me over there and read all about my experience with the Team in Training program with the Leukemia and Lymphoma Society, find out why I did it, how it relates to me, and see the several photos I have taken over the past month and posted.
or click on the lighthouse link in the post title above to get to the same page.
Friday, November 10, 2006
The question is: Is it a symptom? Is it the oncoming of a cold or illness? Is it a migrane? Is there another tumor growing or working its wickness?
This is what goes through the mind of someone with NF2 or even cancer or any other serious illness in which symptoms or signs of something more pertinent
needing attention would appear as just something ordinary to other people. Did that sentence make sense?
Sometimes when something occurs I get so used to it that I start to make myself believe that it is normal or I withhold from doctors thinking I may seem like a hypochondriac or the problem will just go away in a few days.
Here is the deal:
Saturday was my longest marathon training (4 hours). I felt fine the morning of, during the training, and afterward. However, Sunday morning about 5 or 5:30 am I awoke with an excrutiating headache. Was it actually excrutiating? Hell I don't even know anymore. I have gotten used to pain and all these side effects that sometimes I just think it is normal.
At any rate, I had to take some pain relievers in order to go back to sleep. I convinced myself that I was coming down with whatever ailment Harley had when we returned from the SW. Therefore, I started popping vitamin C and echinacea like mad and making sure I had adequate rest. I even bought this bottle of "Emergen-C Immune Defense" tasty rubin lemon honey losenges. They were kind of like sweet tart candy or chewable vitamins that fizzed in your mouth.
Despite my drinking of echinacea tea, 100% vitamin C juice and my supplement popping, I continued for days to have the throbbing headache concentrated mostly in the front of my head and behind the left eye. (Note: On Friday and Saturday of last week I experienced some mild jabbing pain in my ear as if the start of an infection. At the store on Wednesday evening, the pain also included the back of my head and the left side of my neck or region around my ear.) The area mostly concentrated on the left front side of my head behind my eye. Is that where I have that other big meningioma??? The pain also made me nauseated which I thought I was done with. I hate being nausous. I had to eat however (which helped the nausea) because I could not take pain relievers on an empty stomach.
This happened daily throughout the week at various times of the day. We went to the grocery store after our walk on Wednesday night and I could not tolerate really to look at stuff long or even be there. It occured again and was making me sick. Again yesterday late morning I felt nauseated and got relief after having a yogurt.
Today I seem to be doing pretty good. The last couple mornings however, I have awoke to slightly swollen eyes (the skin on the eye lids). Both evenings I got plenty of sleep.
The headache has not occured yet today so I am at a crossroads on what to do. Do I email all my doctors and tell them about it? I don't think I am feeling stress right now that I am aware of. Last eye visit I had my neuro-opthamalogist thought I might be having stress headaches. Fortunately the pain seems to be relieved through a non-aspirin pill. Normally I have depended upon I-B profen and at certain times over the last couple years I only experienced relief when taking Excedrin.
Like I said, I have to log it here so I can keep track or I will forget about it or what happened. It is hard to know whether I should cry wolf to the doctors when I actually don't know if it is a wolf.
Tuesday, October 31, 2006
Last night we had our pumpkin carving festivities. Pumpkin food, drink, and warm tea was also to be had. From left are featured my pumpkin, Pat's pumpkin, and Harley's pumpkin.
After searching two major stores in Redmond with no success I luckily found a pumpkin stencil pattern at our local grocery store. These stencils work even better because instead of paper that you need to tape on it is a sticker pattern. You just carve right over the sticker and when finished remove the excess sticker portions. No need for messy tracing with a pen or pencil, cutting out shapes to trace, or paper falling off the pumpkin face leaving an uneven pattern!
This works really great for someone like myself as my hands are no longer steady (nor is my patience) after the digression of NF2 tumors or treatment (not sure which or both....prior to all this I had pretty steady hands). In fact, for those who do not know, Zoology is my background degree. The disection portion of labs was always my forte' and at one point in my undergraduate education I thought I would probably make a great animal surgeon. However, it did not seem like like there would be a plethora of jobs in that route. I would not want to make an incision in a living creature either.
I guess I made a good consensus back then as there is no way I could perform something like that now! Harley on the other hand is a very skilled and masterful pumpkin carver. I kept thinking what a great surgeon he would have made. Yet I am very glad he did not choose that path either.
Click the lighthouse in the post title of this blog entry. It is a link to a slideshow of Pat and Harley carving their pumpkins. Included is a picture of all three of our pumpkins with the actual stencil pattern given names for each. UPDATE: YAHOO PHOTOS IS BEING CRANKY. THE EARLIER SLIDESHOW FORMATS I USED NO LONGER WORK BECAUSE THEY DECIDED TO UNBRILLIANTLY CHANGE TO A DIFFERENT MORE ANNOYING FORMAT. FROM THE NEW LINK I POSTED YOU WILL HAVE TO CLICK ON THE SLIDESHOW TO VIEW THE PICTURES IN SLIDESHOW FORMAT. THE ALBUM IS TITLED PUMPKIN CARVING 2006.
We realized when Harley was finished that he created another NF2 pumpkin. Last year was his first and we did not have stencil patterns. The reason it is an NF2 pumpkin is because it shows signs of the NF2 halmark of facial paralysis. I did not like the cleaver in it but he said that represents surgery on the side that is weakened.
To see our pumpkins from last year, please click the links to below that will direct you to last year's Halloween blog entries:
Mr. Eggplant Pumpkin
My Happy Pumpkin from last year
Okay I must be going nuts. I thought I posted the photos of our two pumpkins together last year but I guess I did not. Let me see if I can find it. Okay, Harley's pumpkin from last year is the small photo in the upper right corner.
Friday, October 27, 2006
I have created a new blog today. No I am not abandoning this one. I felt I needed a special place to share with you my involvement and preparation for one of the largest events of my life. I never imagined I would be in a marathon. Funny how it took being humbled and beaten down by NF2 to have my eyes opened wider. Just when I thought I understood empathy and many other perspectives of life, I have restarted life again anew.
If I had not been struck by NF2 I do not think I would be doing this. Strange how life takes us on those paths. I have thought about what I would be doing if I did not have NF2 and I am certain I would be too busy on a very different path and the thought of doing this marathon would have never entered my mind.
In the past months of making the decision, committing, fundraising for the LLS and my marathon involvement, learning more about "Team in Training", meeting the people training with me and dedicated to the society, finding out who supports me, I have gained more perspective than I could have imagined.
What started out as being able to walk at my regular pace again without a walking stick (after bouts of illness, dizziness, and at times not even being able to read or make it far out of bed), a chance to honor my grandfather battling his second cancer (a blood cancer), and an opportunity to fulfill a debt and responsibility I felt I needed to contribute for my good fortune, has turned into quite a phenomenal journey that I will carry in my heart forever.
They say that you can never fully understand a man (or woman) until you walk a mile in his (her) shoes. Well I am literally going to walk 26.2 miles and through the process I have been learning about the blood, sweat, and tears that people dedicated themselves to in order to give me a second chance.
Prior to my decision to embark on this journey I found I took something for granted that I never realized I had. I did not know what Team in Training was or the committment that people chose to make. I guess at the age of 21 and beyond I just thought the medical resources that kept me alive came from the government or perhaps I did not think about it too much. I was just glad to make it through that ordeal.
Being involved in this program has greatly enhanced my sense 0f gratitude and appreciation of life and the good will of humanity.
Please come and visit me at my Seattle Marathon Blog at http://blog.360.yahoo.com/blog-zo.V4TMzd7O1jdfKa9vCJKnI2TVF.
Please also check out the links down on the bottom of the left hand side of my yahoo 360 Seattle Marathon Blog. I have included links to the Leukemia and Lymphoma Society, the Team in Training program, my LLS donation page, the Seattle marathon info page, a link to the Seattle course map, and the pages of some of my amazing teammates who are inpiring and have overcome tremendous odds.
Wednesday, October 25, 2006
More things are wrought by prayer than this world dreams of.
- Alfred Lord Tennyson
Our chief want is someone who will inspire us to be what we know we could be.
- Ralph Waldo Emerson
What people say you cannot do, you try and find that you can.
- Henry David Thoreau
You cannot dream yourself into a character, you must hammer and forge yourself one.
- James A Froude
When a man's fight begins with himself, he is worth something.
- Robert Browning
While you live, while you may, become good.
Have a purpose in life....throw into your work such strength of mind and muscle as God has given you.
- Thomas Carlyle
The possibility that we may fail in the struggle ought not to deter us from the support of a cause we believe to be just.
- Abraham Lincoln
It is the greatest of all mistakes to do nothing because you can do only a little. Do what you can.
- Sydney Smith
I also had to plan for our trip to the southwest. We left on October 16th and returned very late last night (or early this morning depending on how you look at it). I hope to post a couple shots of the 1000 or so photos we have. But right now my first priority is preparing for the Seattle marathon. My fantasy is to make another blog with more details about my involvement in the marathon, info on why I am doing it, some pictures, thank you recognition to my donors, names of those I am honoring and walking in memory of, and hopefully some shots of my experience in the marathon (probably not great because I have to stand still to get a steady shot but it will at least give you the perspective of what it is like to be in one). I was hoping to accomplish building this site before the marathon but I am not sure I will have time. I might have to just write a little something about it here. In case you are wondering...YES! THIS WILL BE ONE OF THE BIGGEST EVENTS OF MY LIFE!. I am nervous and preparing for it just like someone who is getting married or having a child. One main thought that goes through my mind in all this is "Okay now I am down to one month. I made it through 5 months. Please God do not let me get injured before the event.".
Oh yeah. Here is the Team in Training website: http://www.active.com/donate/tntwaak/tntwaakRDufek
About the last appointments.............well shoot I just don't know what to say. I was told things look stable on the MRI but somehow the MRI report indicates that there is even less space for my brainstem between the tumors on both sides. Somewhere in the process of time the current report indicates there is now only 4mm of space between the two tumors (brainstem in the middle) as opposed to the 6 or 8 mm prior. I have inquired about this discrepancy which seems rather important and huge to me. Afterall, it is MY BRAIN. I have not gotten an answer. Could it be that the reading radiologist made an error????? Well I pursued it for awhile and it just exhausted me. There is nothing to be done anyhow if there was some growth nobody caught except to just cut it out. I am focused on the marathon right now and don't want anything to change my plans. I will do some more prodding and investigation into after the big event.
In case you have not figured it out like I have over the past few months, one event carries me over to the next. It gives me something to look forward to and focus on. About a year or so ago I was afraid or leary to make plans (such as traveling) so far in advance because I was not sure what was going to happen or if I would make it there.
My birthdays are kind of like that now. There was a time after treatment when I was afraid I would not make it to my 32nd birthday. It is kind of like the movie "Final Destination". It felt really great when I made it to that day and it had passed! So each year is kind of a milestone for me now. I reflect back on all that I have been through and how far I had come when I was uncertain to be at that point.
Wednesday, September 27, 2006
I like to visit Mt. Rainier at least every other year. I think I have been there about 7 times since we m0ved to the state of Washington. The
last time I was there over labor day 2004 before I lost the majority of my balance. I recall my dad and I walked across a glacier which I would no longer be able to do. Yet the mountain still calls to me and it was my wish to visit it again for my birthday (September 22nd).
I am pictured here the highest I was able to hike that day. Harley and I think I could have gone farther but the trail got steeper and more challenging which would have been incredibly difficult to walk back down and not to mention would take me a long time.
I could not help myself though and as our journey progressed I wanted to go higher up the mountain and further up the trail.
Thursday, September 14, 2006
Friday, September 08, 2006
My eye appointment was a week ago and upon peering through my pupils and the back of my eyeballs, there is still evidence of swelling. Apparently the optic nerves are not tamed yet so I will continue to take the Diamox (which reminds me I forgot to take it tonight! Crap! I will be right back.......Good thing I blogged.)
Ok I am back...medicine swallowed. I am too tired right now and do not feel like writing.
This afternoon I go in for a followup MRI scan of the brain a few weeks early as I have been experiencing some headache problems. The routine over the last year has been to get them every 6 months. After treatment it was every 3 months because I was having side effects.
My last MRI of the brain was on April 10th. The last spinal MRI was July 29, 2005. I do not know if I will be getting the spine MRI today as I forgot to have the doctor order that until I thought about it yesterday.
After the MRI (within the next week or so when there is an opening and a captioner available) I will see the radiation oncologist.
Thursday, September 07, 2006
Top left: Keens on the red sand of Sedona, Arizona.
Right: Simple Strappy Sandals with a formal evening dress.
Bottom left: Wearing TEVA leather sandals at the Jamaican market.
Since we were discussing poles let me share shoes. Shoes for the balance challenged take special consideration. Gone are the days of cheap shoes and high heels. You would not believe how hard it is to find a pair of comfortable shoes that look nice to wear with a formal dress!!!!! Fortunately I must have anticipated this struggle in my brain as a year ago I purchased some nice sandals on the REI outlet. The sandals are called "Strappy Sandals" by the brand "Simple" and are the absolute ONLY dress sandals I could find. I am SO glad that I bought them a year ago and never wore them until this June. The straps are velvet leather and the foot pads are a soft cushiony material with a form fitting sole. I went to SEVERAL stores trying to find something white to wear with an ivory dress to no avail! The shoes either had some type of heel, were a flip flop or open heeled shoe, or had a flat sole like a dang board! It REALLY was an impossible find. Since my ivory dress was long and covered my feet, I figured it would not matter to wear these black sandals.
When it is summer and hot, I really do LIVE in the sandals that you see me wearing in the Jamaica picture. I have been wearing them for 3 years and have found nothing else comparable. Unfortunately it looks as if the leather on the straps that fasten is starting to wear out (I have exposed them to salt water kayaking on a couple occassions). They are made by TEVA and I am waiting for them to make a similiar pair of equal comfort (no rubbing or iritation on parts of the feet), are light weight, and have a sole that literally conforms to and is shaped the same as the bottom of your foot.
If you look back in the blog posts to my earlier Arizona pictures you will see that I am pictured wearing them while posing with the skeleton of a Whooly Mammoth at the Mesa Southwest museum last October. I have not posted any yet, but I also wore these sandals exclusively while traveling in London and Italy prior to my treatment in 2004.
In the top photo are my trustly Keen Narhgee shoes. Aside from my REI backpacking boots (a gift in 2002), these are the most expensive shoes I own. It was quite a decision but when it boiled down to it there was no choice. Due to my balance issues I needed a lightweight trail shoe that conformed to my foot but in which I could also feel the contour of the ground through the bottom of my feet. Unfortunately the backpacking boots which I absolutely LOVED became difficult and a challenge for me to wear due to the thick sole and heavier weight. I could not feel the ground through the balls of my feet and thus sense changes in the terrain in order to adjust my footing for optimum balance and to prevent falls.
Now you may also wonder why I did not just by a pair of tennis shoes. Often regular athletic shoes do not have as good of a tread or grip the ground and terrain as well as a trail/hiking shoe. Those that do, run in the same price range as these shoes. Also, due to living in the Pacific NW where we get a good deal of rainfall I needed a shoe that was waterproof. That limits many options and the athletic shoes that have both good tread and waterproof ability sometimes cost more than these shoes.
My shoes I have all purchased at REI because I can taken them home and try them out and return them for a full refund if they do not work out. Most of the shoes I got at the outlet which has free shipping as long as I pick up the order.
Others I wear often:
Merril brown leather dress shoes (slip on but with a heel) for winter
Aididas Running Athletic Shoe (running and training to walk the marathon)
Photos taken by Harley Dufek
Top left is of me in July 2006 at Fort Worden State Beach in Port Townsend, WA. Top right is of me and two locals at a Jamaican craft market in Ochos Rios Jamaica in June 2006. Bottom right is of me on Hurricane Ridge in the Olympic Mountains National Park in Washington in July 2006.
Interesting links I found:
Fashionable walking sticks and walking canes
Free Leki Pole Offer
Walking Poles and Mobility Aids (one of the first photos is the walker with wheels I want to try out to see if I can use to rollerblade again)
Here is another version (cheaper one) of a walker with wheels that I would like to try out
If you want to buy a staff/hiking pole like mine, click the lighthouse link in the post title. The staff is made by the Audobon Society and is called the "Tracks" sherlock hiking pole. Harley bought mine at REI a few years ago as a birthday present but I cannot find it on their website. We bought a matching one at REI a year ago so both Harley and I can have one or he can use them both as hiking poles when I use my other pair.
The top of the sherlock staff can also be unscrewed and an SLR camera can be mounted on the top as a "on the go convenient tripod" for outdoor photography while on the trail. Currently the pole/staff is being sold on ebay through Mickie's Place Outdoor Gear for $49.99.
Wednesday, September 06, 2006
Alright this has nothing to do with NF2 really but the news has made me LIVID!!!!!!! My husband flew out to visit his mother in Minnesota and I had bought some nice gardenia smelling body spray from Bath and Body Works. Those who are fans of the famous store no that it is not cheap. So let this be a warning to all!
Seeing as it is one of the last things I gave him while packing he put it in his carry-on luggage. He also has his toiletries such as hair gel, shampoo, and toothpaste. In addition he was carrying a nalgene water bottle filled with water. Guess what??????? At the x-ray machine airport security made him throw out EVERYTHING - yup the brand new bottle of body spray I just bought, the toothpaste, the shampoo, the hair gel, and even the freaking water for cripes sakes!!!!!!!!
What is next?......tampons and lip gloss that you find in women's purses??? Gum? Mints? Breathspray?
Okay the tweezers, nail clippers, and grooming scissors were a little silly but we put up with it. This new rule (just who in the hell pulled that out of their arse?????) of anything liquid is pure hogwash!
Now back to NF2, cancer, or other such disease or disorders. For many of us we MUST have water with us at all times. Unless you travel first class which is VERY EXPENSIVE, you know that something to quench your thirst does not come around for at least 20 minutes or more after you have boarded the plane.
For this reason, I ALWAYS carry some type of LARGE water bottle with me and or fill my hydro-backpack. I often suffer from dry mouth and need to drink water continuously. I know that several cancer patients, people on prescription steroids (such as NF2ers after surgery), and several other disorders need to do the same. What are they all going to be required to dump out their water now and wait for the little cup? WTF????? Again, who invented this dumb ass rule?
Let me also say that things I commonly carry on with me for obvious reasons would be lip gloss and carmex, a small bottle of body spray as one can become kind of smelly on a flight, a small bottle of hand lotion (ALWAYS as I often have a serious dry problem of my hands where they can crack and bleed in changing weather), a small bottle of mouthwash to rinse my mouth, eye drops (THERE IS NO DISPUTING THAT AND MANY NF2ERS WILL AGREE), and often my toiletry bag in case my checked luggage becomes lost.
We just made a flight to and from Miami in June without any problem. I had all of the above in my carry on luggage. So when did this lame brain new rule go in affect?
Needless to say. I am "madder than heck"! Please pass the word. This has just gone too far!
Saturday, September 02, 2006
After flipping the paper over I observed that on the other side was some information for an online search about lab support regarding microbiologists. It definitely would not be one of Harley's papers.
Upon flipping the paper back over again and examining the list of authors who wrote the quotes I finally recognized the writing. While the handwriting is not the most beautiful it is still nice looking and legible. The letter shapes in the name "Martin Luther King Jr." and "Goethe" became familiar to me as I identified the writing as my own.
Now staring at the paper revealing my long lost handwriting it is as if looking at an ancient script written by a physical being that is gone. I can no longer identify with the handwriting and I wonder about the person who wrote it. I am amazed that it is my own.
This is not the first time that this has happened. Over the past year we have been doing lots of cleaning out and moving around of things. I have found old school notes that I have written and many tasks lists and diagrams. Each time I am always bewildered by my prior multitasking skills, things that I accomplished, and my good penmanship.
It is an odd sensation. When I see these things I feel as though I have known the person but I am not the person. This ranges from handwriting to pictures of me prior. It is like carrying a "symbiant" where I have that person's memories inside but I am a different physical being.
In case you are curious, here are the quotes I had written down years ago:
"Our lives begin to end the day we become silent about things that matter." -Martin Luther King Jr.
"There is nothing in which people more betray their character than in what they laughed at." - Goethe
"Life appears to me too short to be spent in nursing animosity or registering wrongs." - Charlotte Bronte
Wednesday, August 30, 2006
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
Monday, August 21, 2006
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 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
I am a thousand winds that blow
I am the sunlight on ripened grain
When you awaken in the morning's hush
In circled flight
Do not stand at my grave and cry
I am not there
Monday, August 07, 2006
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.
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
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
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!
Thursday, July 27, 2006
As it turns out my optic nerves were swelling again and I had to go back on medication. My one doctor told me that the running might be causing too much pressure to build up in my brain. Okay but I was determined to run my 3 miles in the Relay for Life (to which I collapsed for a short bit afterward.....tell ya later).
In June I fell on my tailbone and bruised it very badly. It has taken this long for it to heal so I have not been able to run at all. Then I began to experiment at Saturday practice over a week ago. I wanted to do 2 laps around the park and it seemed like many people were running around me. Therefore I sort of jogged in little spurts (for only about 10 minutes) but it made me dizzy.
On friday night (not sure exactly) Harley and I took the dogs walking but it was an hour before sunset and the squeeters were out. Thus we had no choice but to run on the way back. I just kept running and reached the open field before I thought I would (we had to run past the stagnant ponds and the creek which are prime breeding grounds for the beasts). I think I ran for about 18 minutes and then I walked.
Yesterday however, I did not have the dogs with me so I decided to try to go for a half hour run. I ran for about 32 minutes and walked the rest to make it an hour. Fortunately the weather has cooled a little and there was a slight breeze. I did not seem to have pain but the coordination for running was challenging. Yet I was able to run for 30 minutes which I have not been able to do for over a month!
Here is a link which explains one of the reasons I cannot run too far and why at certain times I have difficulty with night driving. The best way to describe my life in motion (walking, running, riding on a bumpy road) is like constantly viewing life through a home video camera while in movement. Sometimes (depending on what shoes I am wearing and the terrain) life is like living without shock absorbers (like riding in a car with no shocks). I first noticed this maybe a year or more ago while walking down to the mailbox. I could feel every little bump and pounding of my foot on the gravel drive. It was as if I lost any sense of shocks on my body and the vibration resonated through my spine shaking my skull and eyes.
I have learned to get used to this but yes it is very tiring at times. It takes a GREAT deal of energy and concentration to adapt and get through it.
My classes are every Sunday at the Mercer Island pool and I greatly look forward to learning more from our excellent coach "Ed". There are two pools a) an olympic size lap pool and b) a shallower pool which is half the size. Those who are advanced swimmers practice laps in the olympic size pool. Most if not all of those women are training for the Danskin Triathalon in August with coach Mary of Mary Myer Fitness. The rest of us are in the beginner class and we are taught by Ed who if I understand correctly has been a collegiate swim coach. He is awesome! If you did not know better you would think he was born in the water and was a "merman".
Now some of you who have known me a long time might be sort of confused (especially if you grew up with me or know my history with the water). I have always been a water child and would have been happy had I evolved a set of gills. My favorite memory of the water while growing up is jumping off the ford river bridge in the icy ford river in early summer/late spring and also playing the rock race game at "Dut's" swimming hole. What is the rock racing game you wonder? LOL Well being a rural country bumpkin we were good at using nature to create things to do. We used to find a heavy rock (not too heavy but just enough to keep you at the bottom of the river) and race across the river bottom. Yes sometimes the depth must have been 3 to 4 feet over our heads! We would hold the rocks and scurry across the bottom of the river holding our breath to see who was the fastest. What a blast!
In college I took an aquatics swimming class (to meet one of my PE requirements) and then went on to take Lifeguard training, PADI basic open water (scuba) certification, PADI advanced open water certification, PADI rescue diver certification and specialties through SSI in night diving and low visibility. In addition, to get some more dive time under my belt, I volunteered as an assistant for the diving organizations PADI, IDEA, and NAUI.
So why the heck I am in the beginner class? The tumors destroyed a great deal of my vestibular function. I was absolutely shocked on the third day of treatment to almost drown in 4 feet of water at the hotel pool. I loved just playing around in the water and decided to close my eyes in the chlorine water and do a summersault. Well the summersault never happened and with my eyes shut I could not stand up nor find the surface. Desperate for air I had to finally open my eyes to determine why I could not find the surface in such shallow water. I was alone but thanks to my history with the water I was able to stop panic and think my way out of the situation.
I have tested it out in a pool over the past year. If I close my eyes I cannot complete one full summersault rotation but with a mask I can do 6 perfect summersaults in a row on one breath. The class is to learn the proper technique of swimming I never learned in order to be confident with my skills in the water. When I see water I still long to jump in but the incident brought forth some aprehension that I am working to overcome through greater confidence in my ability.
I love the water and I am not willing to give it up so easily! That is one thing I have learned about NF2. I have experienced many unexpected changes but with learning the right adaptations I can continue to have an active lifestyle.
Sunday, July 23, 2006
Photo taken by Harley Dufek in Ochos Rios, Jamaica on June 27, 2006 aboard the "Sinara" Trimaran.
Check out that right knee (the one closest to you in the picture). Actually it does not look too serious of an infliction in the photo but it ended up being pretty bad.
Seeing as our mission was to snorkel the whole time ashore in our first port of call in Labadee Haiti, I did not bring my walking stick with me. For one I did not want anyone to steal it while I was in the water, and secondly I did not imagine I would need it.
After an hour or more of snorkeling we decided we better take advantage of the free lunch provided at the island bbq as it would be awhile until dinner. In our hurry to be the last ones to grab some food before they shut it down, I tripped walking over the lumpy yet hard sand dirt road. Unfortunately the sand was rather abrasive due to its makeup of fine coral particles. Therefore it left my knee an awfully bloody mess.
What was even worse is that this happened in front of duck boat (busload) of people. Being on vacation I am sure they thought I was some fleusy who had a little too much rum! LOL I arrived at the bbq with blood dripping down my leg and had to get a cold glass of ice water and a napkin to clean it up (the ice water is safe in that spot as the area is owned by the ship and all the food and water is provided by the ship).
When I fell I did not imagine it would be such a nasty wound. Each time I went snorkeling it got worse and a big ugly scab formed with a rash around it when I returned home. It is gone now but a definite pink scar the size of a quarter is in its place to match all the bruises on my body.
Falling injuries are quite common on a daily basis but often I forget about them unless they are more serious such as when I fell on my tailbone down the stairs and falling on something abrasive such as coral sand. Bruises will show up on my body that I cannot account for as I get used to bumping into objects and falling as a normal part of life now.
My lastest falls (close calls) yet not as serious include: falling like a tree on top of our luggage behind the antique wood frame couch in our hotel room (I bruised and scraped my armpit area), slipping down the stairs again last Sunday trying to hurry to my swimming class (fortunately I did not reinjure in tailbone but formed a large bruise and scrape on my forearm), falling yesterday on a pile of tools (including some kind of small router saw that was fortunately turned the opposite direction) in the spare bedroom filled with things we have no place for, and today I did something on the stairs that hurt momentarily. I know I will have a bruise on my shin as I whacked it hard going up the stairs. The rest of the details and my other bruise incidents have left my memory.
ILY- means "I Love You" in ASL.
Here is a sneak peak at my very first reintroduction swim in the ocean since the first day of my treatment in July 2004 when I went boogie boarding off Santa Cruz beach. The photo was taken in the waters off of Labadee, Haiti which was our ship's first port of call.
Although I needed assistance in and out of the water, I was thrilled to be able to snorkel and finally return to the underwater world which I love so much.
In the caribbean it is the law that you have a snorkeling vest so that is the black thing draped around my neck. I did not mind as I was able to float along over everything without having to worry about swimming. It was difficult at first to remember that I was not diving. The vest sort of gave me the feeling of a scuba BCD so every now and then I would forget and put my whole head under the water while still breathing on the snorkel. Hehe...nasty awaking swallowing that salty water!
I have not realeased the photos yet (I will soon) but I did suffer a significant facial paralysis for more than a year. At the worst point, I could not move half my face and I was concerned back then (not only of looks) but of whether I would be able to breath off a snorkel or regulator. For a long time I did not want anyone taking pictures of me and I did not want to show anyone photos of me. Thus the long absence of photography on the blog for a period of time.
Fortunately I have regained most of my face back (there is still some facial paralysis which you will notice in pictures of me.....most notably the framed formal anniversary photo I posted). However, I have gained enough function back now to breath on a snorkel with ease. I can even sip on my hydropack now (I am pictured wearing it in the Mayan Ruins photo of us) without having to hold my lips shut. We will see how it works with a scuba regulator when I am ready to try it out.
If all else fails, the snorkeling worked out great for me (with the exception of getting out of the water on shore.....I cannot stand up in water at my knee level or below!). We snorkeled for I think 2 1/2 to 3 hours in Haiti and then went from a boat in Jamaica and Grand Cayman which was nearly not long enough.
Saturday, July 22, 2006
Unlike most deaf people, I and many others with NF2 hear nothing at all. Our world is completely silent except for the occasional tinnitus (ringing in the ears....noise in the head) that visits us.
Therefore, I would like to inform you how I have adapted or how to get my attention.
I would not even wake up if a bomb exploded outside my house (unless I felt the vibration which would have to be rather intense). Therefore I have a special alarm clock called a "bed shaker". LOL No it is not the same as those coin operated beds you see at cheap motels in the movies. A flying saucer shaped device plugs into my special clock. I put the saucer under my pillow and it vibrates the heck out of my skull when it is time to get up!
I don't answer it because I cannot distinguish between a call for me over relay or a call for Harley. If it is for Harley and I answer it there is no typing to read on my phone and it is a dead end for me. I DO have a light flasher Harley installed to the ceiling of my computer armour. When the phone rings this light blinks and and off. If the call is for me and someone has called over WA Relay for the Deaf, an operator will type a message for me that I will read on a small screen on my phone. This special phone is mounted next to my computer and if I am at the computer I can call the person back right away.
It used to be that the dogs alerted me by barking but I can no longer here that. Since we live rurally we do not get many visitors so I do not have a light flasher for the door. I usually know when someone is coming by and I can watch for them. My computer is in the loft overlooking the front door. When Harley comes home, I can feel the vibration of him closing the front door through my feet (If I am in the loft). I don't wear shoes in the house (only barefeet or slippers in the winter). This also works if I drop something bigger than a piece of paper in the house. I can feel the vibration through the floor. Note: While on the boat my stateroom had a door flasher. There was a device or box that had a seperate light for each thing (phone, alarm, door, fire). When the lights would start flashing I would look at the box to determine if someone was at the door, if the phone was ringing, or if there was an emergency.
Getting my attention:
IT IS EXTREMELY IMPORTANT TO TAP MY SHOULDER GENTLY AND NOT TRY TO YANK THE DANG THING OFF! SOMETIMES I MUST FINISH WHAT I AM DOING AT THE IMMEDIATE MOMENT SO IT DOES NOT LEAVE MY MEMORY. If I am in somebody's way at the store I greatly appreciate a polite tap instead of being rammed in the rump with a shopping cart. Yelling and stomping as loud as you can would be futile since I hear nothing. If possible the best method is to flash the lights on and off as long as it is safe (meaning I am sitting down and not trying to walk down stairs or something). Deaf signers are also used to routinely getting each others attention by waving (small motion like you need something if the person is close by). Big waves are fine if there is a great distance between you and the deaf person.
The ASL GLOSS "Ain't Got None!" Many people would find deafness in this case a blessing as I am NEVER annoyed by ANYONE'S cyring baby or any other loud disturbing sounds. ;)
Last time I tried to take them upstairs in the shower (winter) did not work out real well. Seeing we only had a working shower faucet that was not the kind you can take off the wall and spray around, I had to lift each dog onto their hind legs to rinse off their belly and chest area. Needless to say I was pretty bruised up the next day (especially my feet from being stepped on).
On Sundays and Mondays is a special deal and they clip the nails and brush their teeth too. I was thinking in the summer I would try to wash them myself outside but they like being washed at the pet store and the dogs never let me brush their teeth anyhow. Thus I determined for the convenience, the included teeth brushing and nail clipping, the time and hassle I save, for my safety, and for such a great price I would continue to take them in and have them bathed.
Back to my bafflement......when I returned to pick them up the ladies communicated to me via paper and pen. I make a habit of bringing writing pads with me when I go places. They are ALWAYS nice to me but clearly I may well be the first deaf client they have had. While one lady was busy grooming (trimming) a small dog, the other girl working there would write to me what she was saying or asking.
The girl wrote to me "Can you drive?". I was not sure if I understood the question correctly. There was a pause in my response which I am sure was awkward for them. During that time I was confused why they would ask me such a question. I thought back in my brain "Did I tell them I have NF2 and that yes I was sick sometimes and I could not drive". No I don't remember telling them that. So then I dug deeper into my memory and recalled that I told them about my balance problem and that is why I took the dogs in to have them washed. But why would that prohibit me from driving? Then I thought that I must be having a really off day and maybe I am stumbling around as if I am drunk! What a horrid thought! I was thinking how in the heck did they think I got the dogs there. Maybe they thought I walked them but I had mentioned when I came in that I was a few minutes late due to all the road construction on Redmond/Fall City road. Gosh I must be stumbling around and they think something is wrong with me!!!!!
In all these scenarios I schemed up in my head, I NEVER thought the question was posed because I am deaf. In the two years I have been deaf and the 4 years prior to that when my hearing digressed and I was HOH (hard of hearing), the question has never been asked.
After my pause and look of confusion I questioned "Yeah. Why wouldn't I be able to drive?" Uncomfortably the other girl translated on paper that the other woman thought I could not drive because of my hearing. Shocked and taken by surprise (I really was not prepared for this kind of question) I defensively retorted "It is not illegal you know!". I have to admit that my protective wall immediately went up and proactivity was on its way out the window.
I imagine that my facial expression exhibited the feeling of being offended. I just was not sure how to react. Perhaps they read my face and questioning look of "WTF?" and so the woman went on to inquire what she meant was how do I hear sirens or know that a cop is behind me. My response was "How is it any different than someone blaring their car stereo and cannot hear the sirens?" I then realized this was an innocent inquiry and not an attack on deafness. Therefore it was my responsibility to educate. I informed them that my world is very visual and while driving everything is visual so we SEE the lights instead of hearing them. I think maybe this bit of information hit home as they informed me it was something they were just wondering about it.
Later I had an instant messenger conversation with one of my good friends who also has NF2. He has been deaf for 8 years and lives in a much bigger city than I do. Interestingly he informed me that he has been asked this question countless times. He even feared he would loose his driver's license once he became deaf. I don't recall ever thinking about losing my license due to deafness.
He also went on to tell me that a study implemented found deaf drivers to be safer drivers because they were more cautious and visually in tune to their surroundings.
(Click the link in the post title above to find out how deaf people get along without sound)
Contrary to popular belief, "Deaf people are among the best drivers."
"Deaf people make better drivers than people with normal hearing -- and they could be the world's safest motorists, a fascinating new study shows. "That's because they compensate for their disability by concentrating on watching the road, the research showed. "'They've got it all over us hearing people when it comes to driving," said a spokesman for the National Association of Driver Educators for the Disabled. "'They've always taken in everything with their eyes and as a result they tend to see everything when they're at the wheel." "And not being able to hear ambulance and other emergency sirens doesn't make deaf drivers unsafe at all. The study found that deaf drivers check their rear view mirrors frequently and can tell immediately if they should pull to the side of the road." -- Weekly World News, Lantaria, FL, April 25, 1995.
The things you may have never thought of!