Archive 1

This weekend Eric and I stayed home and worked on the web sites. Our site is far from being done (maybe next weekend). Eric and I may try to get to the Tacoma Rainers baseball game this coming Friday. Jay Buhner, of the Seattle Mariners, is playing there as he recuperates from an injury. I really want to go because I miss my Great Falls Dodgers. It looks like he will be ready to play this October as the Mariners try to win the play-offs and the World Series. I guess being here in 'Mariners country' I'm cheering for them. I'm also going to keep tabs on the Little League World Series since the Bainbridge Island Little League team will be playing. They weren't sure if the parents would be able to afford to go with so King 5 news aired there problem and a local company donated the money for the parents to go to the series. I hope they keep doing well.

The fires in eastern Washington are making the sky very beautiful the last few evenings, but I'd rather not have the fires. I do like to see the sky very red-orange and spectacular, since I only come out of the house in the evening. Eric won't be going to assist with the fires; his company was on call last year for the fires. Our neighbor across the breezeway is in the company to go this year; Eric and he are in the same battalion. I'm not sure if he will be going or not. The National Guard at Camp Murray and some of the Seattle firemen are already gone. The Seattle firemen are specially trained to fight forest fires.

The news lately has been nothing but Mariners, fires and more fires. They talk about the fires in Oregon, near Ukiah, but nothing about fires in Montana. I hope that means that Montana is not being burnt this year.

So far we have no information on Eric's orders. I know the military is 'hurry up and wait,' but they are cutting it really close. Eric is supposed to start clearing post on the 27th. I hope we know before he starts clearing. Right now the orders are pending.

I'll be posting an update, mostly about the physical therapy, on Wednesday evening. I'm going to keep the rest of this on the site so if you check back that day keep looking for the update.

Well I saw a physical therapist today. He was very nice and I think he may have had a little knowledge of Chiari. He 'played' with my neck for about 30 minutes and then set me up with an aide. The aide hooked up a TENS unit. The TENS unit has 4 electrodes with the same jelly that is used in ultrasounds. The electrodes were placed on the right and left of my neck and shoulders. It pulsed, like a massage, for about 20 minutes. I slept for some of the time. My neck felt less painful after the treatment. I have to schedule 4 more treatments for the next 2 weeks. Then I will see the physical therapist again to decide if it would be beneficial to have a prescription for the unit so I can do the therapy at home.

No word about Eric's orders. Should have some pics up on the net tonight. I'll change the link when they are ready.

This has been a long week; I think I'm looking forward to the 28th, mostly. Eric had a 24-hour duty this week and I stayed up a little too late that night. The last few nights I haven't been able to sleep until about 2AM. I'm finding that I have to take a naproxen every night just to sleep without pain. I'm going to put them with the sleep pills so I remember before the headache keeps me up all night. Eric and I stayed in all of Saturday to relax and watch the NASCAR race, great race. Congrats to Tony Stewart, my fav. after Dale. Sunday we did get out. We had the trucks side window tinted and got me a new pillow to play with; I'm going to make it so it will support my neck no matter how I sleep.

It has been a relaxing weekend; I think Eric and I really need it to be relaxing.

I'm trying to teach Eric how to play Pinochle. He's got most of it down, but he's going to have to learn the difference between 2 handed and 3. He should be pretty good at it, because he has a good teacher :) I just can't seem to get it through to him that counting trump is not cheating. I need some help from the Pinochle players!!!

I've tried to stay in the house and keep the house cool. The rain has helped with the temperature inside, but it still gets muggy at night. I've had some bouts with 'hot-flash' like problems and I'm only 25. I thought I would have a few years before the 'change of life,' I'm just kidding (LMAO). I do get this symptom; I'll be ready for menopause. I just get so hot and the room temperature has not changed. Then I get all sweaty and that starts the 'itchies' and I'm miserable and grumpy. Several other people in the support group have the same thing so I'm pretty sure that it's Chiari related.

The support group has been so helpful. It's nice to know you are not alone and that there are others going through the same things about the same time you are. There are so many people in the group that have had surgery and are back to a 'normal' life, but not everyone. I know the risks and that this is not a 100% surgery. I could come out of this surgery the same, but with a scar in my neck or I could be worse after. I have not come across anyone that has had no relief from surgery, but there are the few that have has to have a second surgery. There a many more that have has a successful surgery.

Eric has been so patient with me the last few months, it's almost like he has to suffer with Chiari as much as I do. The families of Chiarians will also e-mail the group with their questions too. They are some of the hardest to read, because I know that I put Eric through most of the same things. It's hard to think about some of the times I have gotten so angry because I couldn't find a word or when my head is just pounding and I get angry and say things I don't mean. Eric just gives me some space and waits until I calm down. He has learned to look for signs that I'm having a bad moment or day. I think he sees the warning and tries to prevent me from getting angry. Lately he has been able to stop the 'temper tantrums.' Eric tries to keep the apartment cool and dark, even though he would like to open the door and get some fresh air. Now that we have a screen door i open the door about 4 and open the blinds about 5. It's working out. We are both learning about Chiari and I think it's just going to make us stronger as a couple to be able to weather the rough times. This will sure make every good in our life a lot better and we will be more thankful for the good days. As is I love my 'good' days, but wait for the other shoe to drop.

I think this has happened to me for a reason. I have researched just about every web site that has to do with Chiari. I still do searches every week, but I haven't found any more sites. This has changed how I look at life and what I want to do with my life. I loved working with older people and being a nursing aide. I miss working, the people I worked with and the people that I helped. I still want that, but I'm worried about the strain that it will put on my neck. I want to avoid a reoccurrence of Chiari.

I knew when I started this site that I wanted to let the world know that Chiari is going to lose this battle. I watch Discovery's Operation show most nights when I can't sleep. I e-mailed them Thursday night and told them about Chiari and that I was willing to have my surgery filmed for their show. I think this would be so beneficial to help others get diagnosed as fast as I did and not have to wait years. I hope that Discovery will either film my surgery, if they don't have time I hope they will consider doing a show about Chiari. Chiari isn't even listed on their Health channel online search. I would like to see that change.

Eric called me from work Friday and told me that one of the guys in this company knows what Chiari is, because his wife has Chiari. I was excited to hear that there is someone so close that I could talk to about Chiari. I hope to find out if she had her surgery here and if so who was her surgeon. I plan on calling her this week.

Eric's orders are coming along. He's personally taking them where they need to be. I hope we have better news about his orders soon.

Eric and I are planning on going to Idaho Labor Day weekend, so I will be posting the update late next week. I will have all of the information on how the trip went and if I will try to travel again before the surgery. I asked the group for travel hints and was pleased with the response. I even got asked to lunch if we were planning on being in the Boise area. I also received an e-mail from a lady that was born in Wallace, near where my Mother was born, and now lives in Hayden Lake area near where Eric and I will be for the weekend. I probably won't have the time to try to go and see them, but it's nice to be asked. I hope the trip doesn't hurt too badly. I'm taking plenty of naproxen, pillows, my contacts and sunglasses so I can keep the headache pain low.

Well the next post will be the neurosurgery appointment update on Tuesday night. Check back on Wednesday or look for me on AOL messenger Tuesday evening. I know my sisters will be online waiting for an update and possibly a surgery date. I promise to get the update online by Wednesday morning.

Had my neurosurgery appointment today. My surgery will be October 18th. I want to get to AOL to chat with family so this will be short. Please read below (I wrote it this AM and reread it just now). I am so glad for all of your prayers and I ask you to pray for everyone in my Chiari support group on Yahoo that they get the same help that I have had.

I've added a new page to my site. It's an outline of my medical treatment from May 16, 2001. It's at the bottom of my story.

I still have a few hours to go, but I thought that I would let you all know what is going through my mind. I've read a lot of e-mails from the support group the last few days about having surgery. I know the risk I'm taking and that this is not a 100% cure for ACM. It would be nice to hear that it was a 'cure.' I know that this could make my symptoms worse or it could take them all away or land somewhere in the middle. Right now I'm remembering most of the e-mails I have read about surgery, for and against, but the one e-mail that is sticking out in my mind. It has nothing to do with surgery, but it is more frightening to me. It was about the % of people with Chiari. The figures for the e-mail were that 1% of the population have Chiari and that only 10% of that 1% know that they have Chiari. That is not high enough for me. I want this to be considered by doctors as a condition not to be dismissed as something else. There was an e-mail to day about a doctor that sent his patient to a neurosurgeon that gave them the Chiari diagnosis. When they contacted the other doctor. The doctor had seen the Chiari, but dismissed it as nothing. I can't imagine having to live with this any longer than I have. I'm a lucky person; I was diagnosed early and am getting things taken care of now. I'm also very stubborn, ask any of my family, I'm not taking this sitting down. I'm fighting tooth and nail to get this to people that need to get theirs taken care of now. I've e-mailed Discovery and I'm trying to e-mail The Montel Williams Show. The show I'm concentrating on is Montel, he know what it means to be fighting for your life. He is not letting MS win without a fight and I'm not going to let Chiari win either. Watching Montel everyday and knowing that he has MS is just making me fight more. I now ask for your help. Please tell your doctor, nurse, family, friends, teachers... everyone. Order a Chiari Pin or donated to them so a Chiari patient that cannot afford one to have one for free, or just donate to Haydee, the pin maker, so she can buy the supplies. I better get ready to go. You may see some of this appear in my story. I write with passion when I feel like I can take on the world.