I need responses this week. I know many of us don't want to address the issue, we feel if we ignore it maybe it will go away. Some of us are fighting to just get out of bed in the morning. Believe me, I am one of you. The set back I had happened just over two weeks ago. I had a 16 hour, violent seizure. I was taken to the hospital and medicated to try to stop the attacks that were flipping my body left and right. My legs were bruised, my arms were bruised, and I had nearly broken my nose when my head hit the side of the car on the way to the hospital. This seizure started at three in the morning and didn't end completely until 10:00 pm that night.

I'm telling you all, I am fighting my body and my soul to get this organization established here in Utah. I am in pain nearly every minute of every day. That isn't going to change. I AM GOING TO WAKE UP EACH DAY, GET OUT OF BED, DO MY EXERCISES, THEN GET TO WORK ON THIS GROUP EVERY DAY. I AM GOING TO DO IT WITH OR WITHOUT YOUR HELP. BECAUSE I HAVE SPOKE TO SEVERAL OF YOU, AND I KNOW THERE ARE MANY OF YOU WHO LIVE EACH DAY, EVERY MOMENT REMINDED THAT YOU HAVE CHIARI AND SM. I'm doing this for you, and for me. Because I firmly believe that we can live a better, more productive life. This Thursday I am meeting with a personal trainer. I am going to have him work with me to see how my life can go. If trying to get back in physical shape makes my quality of life better, or if it drives me down further. I'm doing this, because we need direction. We need an established road to travel, to improve our lives, and I am willing to see if I can make my life better, and if my life after all I am experiencing can become more tolerable, and happier to live, than so can yours. I KNOW IT CAN! I am one of the Chiari Institutes most difficult cases. I am one of the test subjects. That's why I feel I can help improve your lives and want to with every ounce of my being. I know that some days your not going to be able to do certain things. I know that nearly every day your not going to want to do certain things. YOU KNOW HOW I KNOW? Because I just spent the past four years in bed. I've had moments when I have been nearly blind, I have lost my hearing, and am still loosing my hearing. My eye site is decreasing at a very fast rate, I have seizures where I spend several minutes where I will not remember. Sometimes I have glimpses of what I am doing. Example; One night I came out of my room, went to the refrigerater and pulled out some pop and fresh dough. My kids joined me at the island in our kitchen and I began to build snowmen, and Santa Claus with the dough. I remember having snowmen and Santa Claus pop in my mind and little flashes of my hands and my kids hands all working on the dough. Then I came to. My husband and children were all there. They thought it was quite funny. I laughed with the just to lighten the moment then I left the room and cried. The time before I don't want to repeat, just to let you know, I was with my husband, my mother in law, and my husbands grandmother down in St. George. I was absolutely mordified.

I had a stroke back in May. My oldest two sons had to carry me to the car, and my oldest son escorted me to the emergency room. I lost the complete use of my right side, I couldn't talk, I was in the hospital for four days and would have been for more but the doc.s wanted me up at the U so they sent me home.

I'm not trying to out do you all in severity of issues. I have been told that my brain looks like that of an 80 year old woman. I am a walking time bomb. I may very well be putting myself in danger by doing what I am doing. But even if I killed myself trying to make life better for each of you I am willing to do that.

I am going forward this week. I'll march alone, or I'd love to have a full army with me. I want to meet on Saturday morning. We can meet for breakfast at a mutual place. I'm looking for people to RSVP. Sat. is the last time I will really try to get this group together. Then I am going at it alone.

I'm going to tell you all the same thing I tell my jounal - I am sorry, it's summer, the kids have been home, I have had surgery, and AND AND AND ....

No excuse - my most deepest apologies. I have also another site I am managing for the purpose of helping those with Chiari here in Utah and it has kind of been my main focus.

In all honesty this will be short. Our AC is taking the Sabbath off today and therefore so are my eyes. (Heat does that to me - never fun but always an interesting event) Speaking of interesting - I had a new kind of seizure a week and a few days ago which started at 3 a.m. and ended at 8 p.m. that evening. It took control of my body and had me jerking around as my husband put it he wasn't sure I needed a Dr. or an exorcist. (That's just my husbands way of dealing with the petrifyingly scarey) It was scarey, however I'm eternally grateful the worst didn't hit until we left the house so my children did not see it.

However a week and a half later my muscles still hurt after being used too long and I wear out real fast. OF COURSE! Who with Chiari doesn't? BUT - I was getting on top of that for the first time in the past 13 years. I've lost a total of uhum pounds - which is a lot. (for those of you who don't know) I lost 10 more in Aug. and told my husband if I keep going he will be buying me the 2000 dollar wardrobe he promised me by November. Good thing because we're going on our cruise finally in December and I plan on looking good in a bathing suit for the first time in - well let's just say TOO many years. Most of all - I am going to feel wonderful the whole trip.

It's the same ol' story!

I have had a wonderful couple of weeks. I can't tell you how long it's been since I made dinner for my family. No one can understand how hard it is to ly in bed night after night and listen to your family continue on without you. So you can imagine how wonderful these few weeks have been both for me and my kids. Too bad for my husband, he's been on a three week reserve deployment and missed out. The past week hasn't been as good and I spent the past two days in the bedroom most of the day. Then in comes today - cloudy and thunderstorms in the forecast. Now I know why I've had a not so good week.

I spoke to a lady last night far a good hour and she's newly diagnosed and dealing with the same ol' story of expecting any neurosurgeon to know chiari only to go home from her appointment discouraged. I was glad to be able to help her know it wasn't a hopeless cause. That she like so many others of us is dealing with inexperienced nsg.'s who believe they know all they need to about ACM when in actuality they don't. My heart goes out to this lady and all others who experience this. There is nothing more discouraging to know that things are seriously wrong and not have someone who understands and can make you feel like there is hope. So - glad to be there for you Robyn and happy to be there with you through what's ahead.

And Life Goes On!

When life deals you what it does - I've found that you just have take a deep breath and forge forward. Four weeks ago I believe I posted that I'd had what looked like a stroke. Well I'm now two weeks post op. from surgery number 18. What a story this one has been. I went into surgery without an EEG or pre-evaluation on my heart. So I set a new me record in post op. A total of four hours. I haven't taken the time to ask my husband how that went with him. The number one concern was that they couldn't get my heart rate up. I was really glad that my nurse didn't tip toe around the issue and not tell me what was up. My heart rate was at a 40 and wouldn't go up. Anyway they moved me up to my room after they got my heart rate to a 60 where it sat for the remainder of the time. Except that they had a crash cart outside my room. I had a tough time getting my head to adjust to the pressure change, that made me dizzy and unable to keep anything down. Every time I lost what I hadn't eaten my heart rate dropped apparently VERY low because I'd set off every alarm and every nurse on the floor came running. I had a bleed that kept the laundry busy and added to my list of memorable hospital experiences - getting two additional staples in my head to stop the bleeding. Totally wonderful moment but not my worst moment in my many surgeries and illnesses so I shan't complain too loud. Recovery hasn't been too bad, but I'm still struggling with my eyes, and my heart. I have a Dr's appointment this afternoon and I hope it will get us some answers.

I did get up and work in my flower garden with Sarah yesterday. Well I worked, Sarah just kind of hung out. That was okay - I loved the time with her. Sam called me in around noon and I went in and made lunch which was a treat for the kids I think. I really love it when they say "Thanks for lunch Mom" . I put a whole chicken on the grill and we had dinner - Rob and I alone. Tuesdays end up being our night alone because of youth activities from church. So - it's coming. Slowly! I have a hard time forgetting how wonderful it is to be the mother of this family. My children are a joy and I'm just blessed with such strong kids and a devoted husband. They are always there and so supportive. I love life, and I love my family. These experiences with my chiari battles are grilling but honestly - experiencing them is empowering and if someone offered to me to let me experience my life without chiari - if I could keep all that I've gained from it I was going to say "Yes" I would do it. But than - I would be taking away all that my husband, our children, and many others have gained from it. Seems kind of odd that so many people have gained from my suffering. All selfishness aside, I wouldn't change my life at all.