Monday, May 30, 2005

Canine or Human Children?

Many of you will not understand this unless you have pets instead of children or you became closely bonded with a pet prior to or after having children.

If one is diagnosed with having NF2 before having children, then the decision to have children must be deeply and thoroughly contemplated, discussed, and the risks weighed beyond what most parents think about prior to conception.

Why may you ask? First of all, an NF2 parent has a 50% likelihood of passing the genetic disorder on to ANY offspring. That means that each child has a 50% chance of inheriting the NF2 mutation. I am considered a spontaneous mutation because the NF2 gene has not been traced through my family genetics. I am the first.

Often those who have an inherited case of NF2 have an earlier onset and more complications. I refuse to knowingly subject a child to that possibility and face the difficult task of making a major medical decision for a child when at this point there really is not a cure or an effective treatment which would not result in some life altering modification (and I am not refering to deafness).

Second, unlike some with NF2, the surface of my brain is loaded with tumors called meningiomas. I really do not know how many there are. It is hard to tell on the MRI films as they do slices of the brain and the job of counting them is really daunting. Research has shown that events involving the female hormones (such hormone replacement therapy following menopause and pregnancy) can cause these normally stable tumors to grow.

I would not think it would be fair to a child nor to my husband to further disable myself or injure myself where I could not be an independent mother. Further, it would be horrible to die during child birth and leave my husband alone with a newborn child or vice versa, a newborn child without a mother.

Therefore, about two or three years ago I abandoned the idea of being a mother to human children of my own. When I turned 30 my husband gave me one of the best gifts which are my two beloved dogs who are our children. They came from the same litter and are brother(Jake) and sister (Katie).

I think Katie happened to be the runt of the litter as her mother did not like her. We recently discovered that she was limping around and had a cruciate ligament tear and a knee cap out of place. Thus we had to have a surgeon do an ACL surgery on her if she was going to have any chance of regaining function of her back leg.

So for the past few days I have been worried out of my mind and caring for her. I applaud any new mothers out there! I was terribly exhausted as I was checking on her every hour and afraid to leave the house or sleep.

I fell asleep watching the final episode of 24 on disk 3 of season 1 (my attempt to stay awake). She had been throwing up the day prior and would not drink any liquids. I was afraid she was going to get dangerously dehydrated. Finally when I gave her medicine around 11 pm she was able to eat some white rice with milk mixed in. I kept checking on her to see if she threw up again and I must have fallen asleep about 2 or 2:30 am.

I was absolutely horrified when I awoke and it was light outside. Harley was not home yet so it was about 6 or 6:30 am. When I went downstairs she was shaking (I thought she was having convulsions). I felt horrible and thought she had dehydrated. I then realized that she peed in the middle of the night and I think she was really upset about it (this is on some towels in the garage). She probably waited as long as she could and nobody came. I was just super happy that she finally went as it had been a couple days!

I went upstairs right away and got her some milk which she drank. Then she seemed more alert and we spent a little time outside until Harley came home and it was time for her medicine again.

Jake is really sad not to have his play partner. He knows that something is wrong and is very gentle or keeps his distance when I am outside with her. The day she was gone for surgery he would not even come down from the deck or go for a walk.

She is certainly a tough little girl. She wants to run around and play but can't right now. When we are outside she hops along and wants to go up the hill into the yard or up the stairs onto the deck. We originally planned to have a spot sectioned off on the deck or under the hot tub gazebo for her but we had some days that were just too hot. Thus, we had to keep her in the garage where it is nice and cool and not to mention bug free.

It is somewhat overcast today. If it stays that way and we decide to cook on the grill, I may have Harley carry her up to the deck for a while.

I am too weak right now to lift her gently and my balance is too poor where I cannot carry 70-75 lbs uphill or up stairs without falling over. This was my greatest fear Friday night as I did not know how I would lift her safely into the truck and drive at night to the animal hospital if she needed an IV for rehydration. Thank God she pulled through!

Have a good memorial day!

Tuesday, May 24, 2005

Taking a Moment to Enjoy a Small Pleasure

I really love mango shakes. I am back to eating them again. I had 3 mangos left. That means I can make myself one tomorrow and Thursday. Somehow the mango shake and sun make me feel happy.

I have not written much or there have been long lapses because I was having a hard time. I kind of got caught up in that whole "pleasing other people" philosophy and did not want to write unless it was something positive and uplifting. But of course that is not really being honest and shielding you from the truth.

I forgot the main purpose of this blog and that is a documentation for me and for others of what it is like living with NF2 and how difficult any type of treatment decision can be. It has been nearly a year and it seems I am on a continuing decline which has gotten me very down. My mom encouraged me to still write about those things.

The truth is besides hiding the bad things from you, I have also been very tired and my fingers numb making it hard to type. When I have a good day I seem to overdo it and become too tired out to write. Like last night for instance, all I wanted to do was to escape. Thus I watched about 2 hours of season 1 of "24" on netflix. It was the chance for me to avoid what was happening and just escape into another realm.

Anyhow, I just wanted to tell you that I awoke kind of sad but the sun and a mango shake would not allow me to be. They may be such simple things but this morning there are incredibly beautiful and delightful to me!

Sunday, May 22, 2005


Here is something for everyone to chew on for the next time you are out shopping:

Yesterday I was in Target picking up a few necessities. It was nuts! I literally had to have eyeballs mounted all around my head for a panoramic view of anyone breaking down the isle with a shopping cart. It seems I spent more time looking out for people and politely moving then actual shopping for what I needed! (keep in mind that I did not have a cart nor basket).

Anyhow, I can no longer crouch down low to see things on the bottom shelf without rolling back into a ball like a rollypolly bug. So I was slightly bent over to see something at eye level to read it. All of a sudden I felt a cart wisk my ass and slightly hit it. Of course with my dang midwest nature I immediately said "oh sorry" as I noticed the hit and run culprit escape away without a glance back. I then stood up and looked to see nobody else in the isle! There was plenty of room where that man did not have to hit me.

He was probably torqued because he may have said excuse me a few times with no acknowledgement from me. Sorry dude but you are not that important and worth the effort! I really cannot see something like that happening unless you are of a racial minority trying to shop in a racist town.

If you say "excuse me" and get no response, please think before you act! For crumps sake at least have the decency to politely tap the person on the shoulder and motion you would like to pass by instead of abruptly hitting them with your cart.

There are any number of legit reasons why someone may not respond A) you are speaking too softly, B) the person is deaf or HOH, C) the person speaks a different language and does not know english (they may be visiting or just moved here from another country), D) the person may be severely depressed and totally unaware of their surroundings----living in a "fog", E) the person may have just lost a dear loved one and is in a state of grief, F) the person may have been told some very disturbing medical news or G) the person might be severely under pressure and thinking about all the stuff they have yet to do that day.

These are not the only reasons why someone may not hear "Excuse me". Just remember that the world does not revolve around you and try to have a little empathy and common decency.

Thursday, May 19, 2005

Learning to Read Signs of Nature

The day was really weird in the first place. The weather could not make up its mind if it were going to rain or shine. For some strange reason my dog Jake kept wanting to come into the house which I could not understand why. When I opened the sliding glass doors he would enter way over the threshhold which was just plain odd.

For those of you who don't know, my dogs are outside dogs and are not allowed in the house. As a matter of fact it is very hard to get them inside when I want to bathe them in the winter. I have to put them on a leash and literally drag them unwillingly in. They love the outdoors.

Also, a week ago I spilled a cherry pie on the kitchen floor. I was hoping they would come in and lick it up for me. NOPE! LOL I actually had to take Jake by the collar and lead him to the pie. He just sniffed it and quickly ran out the door. Yet when I picked the pie up and scraped it into their bowls, they scarfed the pie down like there was no tomorrow.

Around 4:30 pm there was a dry break in the weather where it looked like the sun was peaking out. Prior to that I got ready when it was sunny and when I wanted to go it started to rain! LOL

Jake and I start walking on the trail of an open farmer's field. I did not have him on leash and he darted into this ditch covered with blackberry bushes, wild roses, and a lone tree. I was really mad because he did not listen and just darted in there and took his sweet time coming out.

Finally he emerged and I put him on the leash because he lost my trust and I did not feel like playing these kind of games. I noticed the sun had disappeared and it was very grey out. We continued to walk and he did it again! This time he did it and overpowered me and did not listen. I had no choice but to let go of the leash because he was dragging me down there with him. I could not understand why he would do this. He had never done anything like this before.

He would not come out for quite awhile. It started to sprinkle so I decided to head back. We only went about 20 feet and he darted into the ditch again and I could not see him. I was getting rather frustrated and it was starting to rain harder. This time he would not emerge. The rain drops became huge and I had not brought a rain jacket. I was getting soaked to the bone. Therefore I decided to run for the truck and pick up Jake later because he would not come out of the bush.

As I was running through the trail in the between the two fields I saw a flash of lightening close by. I gripped the foam part of my walking stick just in case the stick attracted another bolt.

When I was closer to the truck and near some trees I stopped to look behind for Jake. He was sprinting towards me. Next thing you know he passes me up! Then he darted into the bush again as I saw another flash of lightening. After it had passed he made a mad dash to the truck and waited for me to get my slow behind over there. It took him a few minutes to decide to come out of the truck when we got home.

I figured out when I saw the lightening that it must have been thundering but I could not hear it. Thus I could not predict the lightening or how close it was. Jake hates loud noises so he must have been scared of the thunder and had an instinct about the lightening. When I got home I told Harley and he informed me that it had been thundering very loudly all day!

Wednesday, May 11, 2005

Mother's Day Visit

We all had a great time visiting my family in Moses Lake over the weekend. I was not able to exercise all week because I was so weak and tired. Yet when I visited my family I was able to take a walk with my dad and our dogs on both Saturday and Sunday morning.

It was nice to visit their home again. We had not been there since thanksgiving.

My mom was supposed to have the weekend off but she got called to duty as the child she cares for was released from the hospital. We were still able to squeeze in some quality visiting time though.

On Sunday we went to my sister-in-law's parents home for an early mexican feista bbq dinner. I was really impressed as her mom had several pads of paper and pens dispersed everywhere in the areas that we were socializing. That was really kind and considerate. Her stepdad also knew a little bit of sign (fingerspelling) which really surprised me. He had learned a long time ago when he was 19 because he had worked with a deaf person and wanted to be able to communicate with him.

As always, the visit was too short. Because Harley worked Monday night and I was so tired out on Sunday evening, we decided to drive back to Redmond on Monday morning. I slept most of the way but woke up in Easton (just in time to admire the entire route over the Cascade mountains).

Happy Belated Mother's Day to all you mothers and mom I hope you finally got some good rest!

Friday, May 06, 2005

Lack of Posts and Lack of Response to Emails

Hi. I have gotten many emails from people and I have not responded to them all yet. First of all I was without a computer for a long time. Then when I got one a week ago, I got sick. I have really felt like crap. In fact I got so desperate last night to finish cleaning my kitchen from dinner on Tuesday night that I took some Theraflu in hopes that my body and muscles would stop aching for a little while.

I really hate living among a mess. I believe your surroundings can be a reflection of how you feel. When things are really messy it makes me feel worse.

Anyhow, I have been sleeping most of the time and when I try to write an email I get really worn out. My fingers are doing weird things again. It is challenging to type and I keep pressing the wrong keys or deleting what I wrote on accident. It took me a half hour to write an email to my sister last night.

I will be gone for a few days. We are leaving today to Moses Lake where my parents live. We are going there for mother's day weekend.

Have a nice weekend!

Tuesday, May 03, 2005

New Computer

Hey I have my home office back! Thanks Ben! Ben is one of our dive buddies who was kind enough to give us his old computer because he got a new one. Oh and thanks KC! KC came over on friday night and loaded Windows XP for me (KC is another one of our dive buddies). Saturday Harley hooked up the cable modem configuration but I have been too tired the past few days to blog. Plus my fingers are weird right now and typing is kind of hard and frustrating.

I will do some more tinkering with photos when I feel better. Harley and I took some pictures of the yard in bloom and the deck. Right now I have to tend to laundry and marinate the pork chops with this great fillipino recipe that my friend George emailed me (yes Mark I am going to give Fillipino food another chance!).

I will write again later today with a bloom update on the yard.

Spoke Too Soon

Well I spoke to soon. It seems that I must have still had some steroids in my body on Thursday. Friday m0rning I awoke with a bad headache but I still wanted to go on the walk at Discovery Park in Seattle. The walk was pretty easy and only an hour long. I still had enough energy to go on a 3 mile walk at a fast pace. As a matter of fact I had to hang back a little in the middle because I accidently poked two people with my walking stick.

After the walk I went to get some teriyaki and stopped at the volunteer park conservatory. My head started to hurt again so I fell asleep in my car in the parking lot for an hour or an hour and a half. Since then I have routinely had headaches that I take extra strength tylenol for and I have been sleeping for the past 3 days!

Today I have probably been up the longest (since 10 am) but I am getting very tired out now. It is hard to complete projects. Unfortunately I did not prepare well this time and I have LOTS of laundry and cleaning to do. I have been working on a small load of laundry for two days now. It also took me a couple days to make this lowfat banana cream pie. Last night I was too tired so I just made a box of cheesy tuna helper. The other nights I had a salad or ate a can of soup.

The good news is that this time I am able to hold down food and I am not vomiting violently. Other than that I feel like I have the flu. My body and muscles ache all over and it makes it hard to even motivate myself to go for a walk. Right now my neck is really sore. Boy one of those massage chairs would be really nice right now! LOL Maybe I should go to some store that has one and take a nap in the chair. :o)

In case you are wondering why I feel like this it is because I am having a drug withdrawal from using steroids for so long. The headaches and sore eyes are from the tumor swelling and those side effects coming back now that I have stopped the steroids.

It would be nice to have a normal life that is steroid free....hopefully soon. I am thinking that maybe I will only be sore and lethargic for a week. I am hoping my body adjusts after that.

To Be or Not To Be

Sometimes you get an idea to join a group. You have visions of how wonderful it is going to be and you create this whole scenario in your head. Then the sad reality hits of how you do not fit in and you become disappointed. Sometimes you may even feel slightly rejected or brushed off.

This often happens in the life of someone who is late deafened. You have memories of what you were like when you were hearing and how you approached social settings with grace and charisma. Even after losing hearing you think you can still be this way and that people would have more respect or admiration for you having gone through such a trying experience but still come out on top. However, not everybody understands or sees this and you find that it just does not work out.

This is the hardest part I think...........remembering how you once were and knowing that you can be there no longer...........that your life has to change.

I had a friend tell me yesterday that sometimes he was referred to as a "banana" by members of his own ethnic background. He said that sometimes white people do not accept him because of the color of his skin and asian people do not accept him because he is "asian" on the outside but too "white" on the inside.

I told him that I sort of know how that feels. I am no longer hearing so in many ways I do not fit into the hearing way of life and I was not born deaf. Sometimes the Deaf refer to people who are hard of hearing or late deafened as "hearing in the head" if they speak, use assistive listening technology, or live among the hearing and hearing lifestyle. English is my first language and I am not a fluent signer so I do not fit into the Deaf way of life either. I have been very lucky so far by the many Deaf people I have met who have been accepting of me. I try to keep with the people who accept me and want to know me.

However, I could not go to an interpreted performance (play or musical) and understand what an interpreter signs. Both hearing and Deaf could enjoy such a performance but I could not. Likewise, I could not go to a completely Deaf party and follow what is going on due to the speed of their signing and the grammar usage which is different from English. It would be similiar to going to a hearing party. Also, there are hard of hearing groups that I have been turned away from because I am now deaf or that I just don't fit in because everyone else still has hearing and I do not.

Anyhow, it is frustrating to have all this knowledge and experience but to be looked at by some people as stupid or helpless. They don't have to say it. I can read it in their nonverbal body language and facial expressions or how they react to me. That is the one interesting thing that most hearing people are completely unaware of............they speak volumes when they don't speak at all or by the way they are saying something and their use of facial expressions. I can tell when somebody is talking about me in front of my face (but they think I do not know) and I absolutely HATE it! It is so degrading.

Sorry to gripe. I am just still feeling very discouraged about not being accepted anymore in certain circles and activities. Hope all is well with you. :o)