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Sandy
27 January 2002
I found the site quite by accident and am so glad I did. I have an AVM story, that I still find hard to believe.
My name is Sandy and I'm 53 years old. Until July 28, 2001 I could say I was a pretty healthy specimen of a woman. I have 2 grown children and my "youth pills", Heather, who is 12 and David, who is 10. I have always said that since they were my "change of life" babies, that they would keep me young or put me in my grave. Until July 28th, I thought it could be the latter.
I got up that morning feeling good. David had a baseball game that morning, at 8:30A.M. I had showered and was ready to go when my kids came up from the downstairs. My 31 year old son was in town from his Colorado mountain resort town that he lives in. He wanted to come down to see one of his little brother's games. He had a thing, every time he called me, he would ask how I was. When he called on the 27th, I was fine and told him that. I was sitting on the couch drinking coffee and smoking cigarettes."Breakfast of Champions" as I called it. I felt fine when the kids came up, I looked at Tony and I couldn't focus on his face. I couldn't see him. I had a pain on the right side of my neck, with weird feelings creeping up my face. Since I was 8 years old, I had had migraines. I told Tony that it didn't feel like the onset of a migraine, but I did feel weird. I told them to go to the game - I would stay home. I have never missed any of his games. He'd been playing since he was 5.
After they left, I started feeling weirder. I got horribly sick to my stomach. After I vomited many times in a row, I knew something was wrong. My husband was going to the NASCAR race that day, which was a twice a year adventure for all the guys in our family. I called his parent's house to see if they had left yet. Usually they would have been gone already, but for some reason, they were leaving later this time. I, vaguely remember, sort of crying and telling him, "I need you to come home - there is something horribly wrong." He got here immediately. I can sort of remember getting into the car and going to the ER. It was as if, as soon as he got home, I shut down. I was in control until he got home and he was in charge. I, only remember trying to find places to vomit, so I didn't do it on the floor of the ER. From now on, I will be telling you what I was told because I don't remember any of it. Little tiny memories here and there...
I guess I was at the first ER at Penrose Community for about an hour or so. Then I was taken by ambulance to Penrose Main. I heard someone say, "This is a code two, not a code one" or visa versa and the siren went off. Backtracking just a tad, they did MRI's and CAT Scan's at Community. I don't actually know why I had to go to Main, but I guess the neurosurgeon on duty wanted to see me. Anyhow, when the siren went off I realized for a half a second that I was in an ambulance. I guess, after being examined by many doctor's that is when someone told my family that I had a stroke. I don't know if they'd said anything about a bleed or not.
The local neurosurgeon recommended that I be air lifted to University Hospital in Denver. Dr. Robert Breeze would perform my surgery. I have very vague recollections of someone saying, "Are you ready for your flight?" and since I don't fly, I said no. I remember seeing glimpses of orange and hearing loud noise. That was the "Flight for Life Helicopter" The next thing I remember is waking up in a bed with a white board sign at the foot of my bed saying "August 3rd and Dr. Breeze." My first thought was, "uh oh, I missed my sister's birthday"
I saw my family and started asking millions of questions. They told me I had a stroke and 7 and a half hours of brain surgery. I recall a bandage on my head - I remember taking it off and flinging it across the room. I had never been hospitalized except for having babies. I wasn't a good patient. I was still sick to my stomach. I felt like I had been beaten. They were constantly asking me the usual questions, "What day is it?" Where are you? What city are you in? Who is the president? Who is the vice president? What year is it? I was good except for I wasn't sure of the day or the date.
I had been there about 6 days and had no clue of everything I had been through. Everyone told me that I had been awake, alert and making jokes since July 28. I remember none of that. They said I had a stroke and being I could move everything and talk, I didn't believe them. To me, a stroke always meant paralysis or death. Dr. Breeze's assistant came into the room and explained! AVM - hadn't heard that before. My eldest daughter made notes, so we knew what to research. She explained that the AVM I had, I was born with and he removed all of it in surgery. I was taken aback by the thought of things bleeding in my head.
When I took my first shower in the hospital, I recall the sensitiveity on the right side of my skull. I guess I had 25 staples in there. I tried to go back to my room to eat - I knew I needed to, to get my strength back. I was still sick to my stomach and all the food was repulsive. I got really frustrated when I would see some of the therapists. My vision was all messed up. I could walk, except I staggered a lot. We did walking exercises and I only ran into the wall once. My 10 year old son and I went with a therapist to go "shopping", as they called it. We went to the gift shop and I was asked to find certain items. I got really frustrated when I couldn't see what they wanted me to find. I was scared...I thought I was going blind or something.
I had to go for an angiogram before they would release me. I had many MRI's and CT Scans during my stay. The angiogram had to be good! I really wanted to go home. I lost 9 days of my life, I just thought I could be normal. After 6 months of disability, I know I will never be 100% normal again.
To this day, my family keeps telling me a lot of things I don't remember. I keep coming up with questions.
I had a set back in November. I had gone off the Dilantin and started experiencing dizziness and nausea. I felt, almost desperate to find out the cause. I went to my PCP, almost daily, trying to find out the reason. He finally admitted defeat and told me to go see the neuro, because he knew my head better than anyone. We made the long trip to Denver again - I was a nervous wreck, by the time we got there. I was in search of an answer. I was dizzy from the week before Thanksgiving until December 6. The only good thing my PCP did, was decide I should start taking the Dilantin again. When I explained all the symptoms to the neuro, he just nodded and said I was having "Clinical Visual Seizures". The best thing was for me to be on the meds again. I, finally, had an answer. Since back on the meds, I could finally get Christmas shopping done. I didn't have the energy, but I had no choice. My family depends on me to make things as "normal" as possible.
Not being a real believer, I have to admit, I have been thanking God every day for making me an AVM survivor.
I want to express my pleasure in finding this site. I have already met and am still meeting people that can share my experiences with. People who can relate to my crying jags, my lashing out at those I love. After the AVM was removed and I saw a normal (as normal as it is) Cat Scan, I make jokes about things getting lost in the holes, everytime I forget, which is frequently, or when I try to find the right words and they get lost.
I am still starving for new people to talk to and thank you for all my new AVM friends. I value your friendship more than you know.
I met a friend on the stroke message board, shortly after getting into the computer - before I found this site and Sydney, thank you, for being one of my new friends.
EMail me anytime. I've got to fight my kids for the computer, but I usually check it a couple times a day. My children would love to make cyber friends around their age that they can talk to about going through almost losing a parent. Scariest time of their young lives too.
Each day when I get a pain in my neck or an achy head, I almost panic, thinking here we go again. I won't let it happen, if I have anything to do about it.
Update: 29 Jul 2002
Hi everyone, it's me, Sandy Guillaume AKA The Cheerer Upper, shoulder to lean on person, from "Bill's World". Today is one year since my AVM blow up and I just wanted to fill you in on me.
I am still on dilantin and having doubts about it, since I never had, what I consider, a REAL seizure. I went off of it in October and back on in November. I was having, what my neuro called "Clinical Visual Seizures" flashing in my left peripheral field, dizziness and the feeling that the top part of my body weighed about 500 LBS. (LOL, it doesn't, trust me) I started feeling more dizzy in January and had my levels checked and they increased the dosage 100mg per day...now taking 400mg. The dizziness is still here.
In February, we found out that our insurance was cancelled. My husband's ex-employer was carrying our Cobra, then he decided to close down his business and cancelled all the insurance. Since my AVM removal, I was considered uninsurable. I tried numerous companies and they all say NO. My husband's present employer does not offer group insurance, where I could be covered with pre-existing conditions. They are a very small company with only 2 employees. He figured the cost factor and it was out of sight. He signed us up for a discount program, which I don't think is very cost effective. (that is totally my opinion)
Anyhow, physically, I guess I am doing okay, still putting up with the dizzy's and can't go back to my neuro, because of the no insurance. One thing, I really would like to know from the family, is does anyone else feel like this??? How can I have a pre-existing condition, when the AVM is gone, gone?? It was completely removed with no chance of re-occuring. How can it be considered pre-existing??
I am going through a mild depression, but refuse to get any meds for it. I can deal with it, so far. My moodiness is driving my family crazy, tho'. I still cry a lot and I scream a lot, for no reason. O'well.
Spring and summer has kept me busy with my son's baseball. I was head scorekeeper for both league's (Little League and Park and Rec.). Two more games and that'll be done. Then we move onto football season. Last fall, I wasn't seeing very well, so I am looking forward to this year, so I can see David on the field. LOL After 2 unsuccessful tries at new glasses-I finally got some that seem to work. I got a store bought pair for the computer. They work well for me.
Until last September, I was a computer illiterate, then my 2 daughter's said I needed a new hobby. I discovered "Bill's World", as I call it, quite by accident while searching for "Clinical Visual Seizures" I posted my story in January and it changed my life. I now have another family and I cherish every moment and every email and every instant message. Thank you to ALL my special FAMILY...you all know who you are. I love you all with all my heart and soul.
Hugs, Sandy Guillaume
I have all my friends for life and that will be forever!!!!!!
Update: 27 Jul 2003
It is time for me to come out and update my story again. My #2 anniversary is on Monday the 28th. I haven't quite figured out if I want to call it an anniversary or my second birthday. After coming back to the world after almost being gone-gone I think it's more like a birthday. I have to pursuade Donny to take me out for dinner. LOL
Anywho...I decided that since the 28th was coming up and I hadn't seen a neuro anything since December 2001, I felt it was time. I needed to get things checked over just for my own peace of mind. I made an appointment with a neurologist and I went on the 25th. He was nice enough...the only problem I had with him is he talked way too fast for my holey brain to catch all he was telling me. He is changing my meds...finally...I have been on the dreaded Dilantin since July 2001 and I have had some interesting effects, but the one I hate the most, significant weight gain.
O' My...as an almost 55 year old woman, where obiesity runs in my family, it is horrible. I have NEVER been this heavy in my entire life. So he is weaning me off and starting me on Topamax. It is supposed to help me lose weight, plus control my "non existent" seizures (except for the silliness in my left eye). He is scheuduling me for an MRI and an EEG in the immediate future. I haven't gotten dates for those as yet. I will have to update again to let you all know what the verdict is on those.
Today, (Saturday) is kinda a creepy day for me. Don and David are going to the Nascar race, here in town. I got sick the day my hubby was going to be going to the race back in 2001. It is giving me an eery feeling to be here all alone...I know I am okay, but still... Heather spent the night with a friend and hasn't come home yet... I need to stress something very important to me. I need to thank all my "FAMILY"for this wonderful site. I cannot name all of them, because that will fill up this page. I have approxiamately 30+ friends that I found on this site and are now my extended family.
About 4 months ago my old computer bit the dust. I never in a million years thought Donny would get me a new one, because he really doesn't like me on this machine. It takes me away from him. But I told him, "I cannot be without a computer...ALL MY FRIENDS LIVE IN THERE". He came home with a brand new one within a couple of days. I was ecstatic!!!! He loves me and I am soooo spoiled. LOL I don't know what would have happened to me if I didn't have this site during my recovery...I shudder to think of what my state of mind would have been. Ok...enuff...Little Mrs. Chatty Sandy starts and you can't shut her up.
God Bless you all and I will update after the tests are done and the verdict is in. OH YEAH...real quick like...speaking of verdict...I got a date for my SSDI hearing. It is on the 12th of August. Everyone pray for me. I really need it! Thanx Rich for all your advice also. Thank you all...I love you all.
Update: 13 Sep 2003
When I updated last, I was going to have an MRI and EEG done. Those tests were done on August 11th. I hadn't heard any news on the results at all, so finally, curiosity got the best of me and I started calling the neurologist's office. I finally got a call back after leaving several messages. It was the doctor who called back, not the nurse. I wasn't too sure what to think when I heard his voice. He said the EEG looked alright. It showed some slowness on the right side, but that was to be expected considering that was where the AVM was. It was in the pariental/occipital area, so that is what my caused from. Well, anyhow...here comes the kick in the head.... He said,"Then there's the MRI...." long pause..."We saw something on your MRI. Not really sure what it is".
I sat there for a few seconds. I asked him what he thought it could be. He said it could be some AVM veins or vessels left over from the surgery. They could have been hidden behind the brain. I told him that the angiogram that was done 2 days before I was released from the hospital showed that it was clear. He mumbled something and my heart dropped to the floor. Can you imagine???? I had this surgery done 2 years ago and I thought it was clear adn gone!!! I asked the pertinent question....could it grow back? He muttered something about if it were veins or something, there was a possibility. At that point my heart stopped.
He told me to call my neurosurgeon in Denver and tell him of the situation and what his suggestions are. I hung up the phone and just sat there. My husband was home for lunch at the time and he kept asking what that was all about. I finally told him what he said and we both just sat there. I immediately told him not to tell anyone until I found out more details. Our family is very close but word spreads like wild fire and I couldn't answer any questions until I knew the answers.
When Don went back to work I called Dr. Breeze's office and left a message. His secretary called me first thing the next morning. I explained everything to her. I told her where the tests were done because she said he would want to see the films. Naturally! She told me she would get back to me after he reviewed them. It took a couple of days before I heard back. I got a call from his nurse practioner and she explained that there is something there. I was in shock again. "Dr. Breeze wants you to come up to Denver and have an angiogram done." I explained to her that I hope my anxiety attacks would allow me to make the 65 mile trip. So I waited until the shock wore off and called to make the appointment.
Well Family, to say the very least, I am really upset about this whole ordeal. All this time I thought I was perfectly fine. I have been the Cheerer Upper for Bill's World, as I call it. I am the backbone for soooo many of the family and now BOOM!!!! I have been crashed to the ground in one felt swoop. I have even been referred to recently, as a Rebel. Oh man, this rebel is crushed at the moment. I don't handle this sort of thing really well.
I was chatting with my cyber daughter Rachel and Jan, of the UK AVM site. It sort of came out about my dilemma I knew then that I had to tell everyone I wasn't going to tell everyone until Rachel heard it from me first. I didn't want her to read it on here. I hope none of the rest of you are upset by finding out this way. Kim, Susan, Candy... It is just the easiest way of my expressing my emotions. Remember my dear family, I HAVE FAITH!!!!!!! I feel all will be fine.
Please keep me in your thoughts and prayers. I will be going to Denver on the 10th of October. Great way to spend my pre birthday...which is the 14th. LOL One good thing, though. I get to go to a Cher concert on the 1st. I wouldn't let them schedule me for that day. I love you all - hugs and luvs.
Update: 07 Oct 2003
Just wanted to let the family know that I had some really good news on the first of October. I got my letter from SSDI and they approved my disability after 2 long years of waiting.
My angiogram that was sceduled for Friday the 10th of October has been rescheduled for the 21st of October. The doctor that was going to perform the test has a test to perform on another person that is more urgent than mine and has taken that slot. They wanted to reschedule me on the 14th, which is my birthday and I said NO WAY. So I will go on the 21st instead. I will update after the results are in.
God Bless you all.
Hugs and luvs
Update: 30 Oct 2003
Hi there everyone...it's me again, the Cheerer Upper with an update on the Angiogram that I finally did have on the 21st of October. Well, first a little confession...when I got my disability papers there was a sentence on them that said that on the MRI the "something" that was seen was a "residual recurring areteriovenous malformation" I didn't tell anyone about this, except for my husband Donny and I think only Candy Lynch. I wanted to wait for the angio for the positive result.
Anyhow, on the 21st, we drove to Denver to University hospital and I was emotionally ready for the test. It took about 2 hours, total. I was expecting my neurosurgeon to be there to give me the results, but, as always, he was in surgery. As the test concluded, I asked the doctor that performed it what he saw. He told me that there is a 1cm AVM in my head. Very calmly I said, "that's what I thought" and they wheeled me off to the recovery room to lie there for hours and hours, flat on my back.
I am not going to get into the humorous part of the recovery because it would make this update go on and on forever, but some of my special friends already know about it.
When I came home, I waited for 2 days to hear from my neurosurgeon on where we were going from here. When he hadn't called by Thursday, I got on the phone and left a message for him stating that I wanted to hear something before the weekend. I was not going to wait all weekend and not know anything. Within 5 minutes of leaving the message his receptionist called me. She said that he wanted to see me and discuss options. I questioned his options and she said he had Gammaknife written on my chart. Out of shere instinct the first word out of my mouth was NO. She then said, "Sandra, you and Dr. Breeze need to discuss this". I agreed and we made the appointment for November 12th.
I wrote to Bill and asked a question for the Family. I have gotten so many responses to my question about Gamma procedure. I want to thank everyone who did respond to me. I have been doing lots and lots of research on the subject. My oldest daughter, Charyn and I have been on the computer daily, reading everything in sight. We have been watching mini videos and really delving into the subject. When I go to see him on the 12th we are going in armed and dangerous. We will not be niave to the subject. I want to know everything I can possibly know about Gammaknife. I still have 2 young children to raise and I do not want any negative deficits.
I guess the next time I will be updating will be sometime after my consultation with my neurosurgeon. Until then, I am going to keep a very positive attitude and continue to cheer up anyone who needs me. I will keep responding to people from the Family and Cheering up all of my friends. They need me and I need them. I am not going to change the way I have been here for them for the past 27 months and that is the way it is! LOL
I love you all and do not expect me to sit back and dwell on anything bad happening to me.....BECAUSE IT WON'T!
Hugs and luvs...
Update: 07 Nov 2003
HI... I got a call this morning from Dr. Breeze's PA. They cancelled my appointment for next Wednesday. Dr. Breeze and his right hand man that performs all the important angiograms did some major consulting this morning and studied my angio for about an hour. They looked it over really carefully and they are almost 100% certain that what they see is NOT an AVM. WHOO HOO!!
What they want to do is another angio, a really extensive one, but it cannot be done until after the first of the year because Dr. Cozy (sp.) is booked until then. But he and Dr. Breeze will perform it, probably together.
I guess when Dr. Breeze did the first emergency surgery back in 2001, he saw an abnormal vessel, and it was left alone, and he is sure that it what they are seeing now and it is not an AVM. But they want to be positive. So the appointment is cancelled because all he was going to do was talk to me about procedure options to get rid of the AVM, and it probably isn't one. I hope this makes sense...I am excited and I am babbling.
Hugs and luvs. (I am sooooooooo relieved!!!!)
Update: 14 May 2004
Hi Family, I realized that since I updated my narrative last, I was happy that I wasn't going to go for another angiogram until after the beginning of 2004. Well here it is May 2004 and I am still waiting for the neurosurgeon to contact me. When they found, what they thought was a 1cm residual AVM, they looked over the last angiogram that they did and really didn't think it was one. So they called and cancelled my consult appointment and told me I wouldn't have to come until after the New Year and they would be in touch. It is now May and I haven't heard a word.
My eldest daughter Charyn and my cyber daughter Rachel are continuously mentioning it, that I need to call and schedule the appointment and I know they are right for me to do so. I am having a few female problems, so I keep postponing calling. But I think my head is probaly first priority, so I think I should do that soon.
My neurosurgeon wanted me to have it done with him and the top neuro radiologist present, so I will call and see when they have an opening appointment. I will probably have to still wait. I had some reactions to the dye last time, so I have to rememeber to tell them that this next time, as well. I don't want to go thru that rash problem again.
Well, that's the update for now. I will keep you all posted as to when and if I get a date for the next angio to see if there is or is not a residual avm. I will let you know. As I always say to all my cyber family.....keep smiling...look up to the sunshine and keep happy. God Bless you all - hugs and luvs.
Update: 25 May 2004
My dear family I don't know if you all know that I have to go have a hysterectomy in the fall because they have discovered that I have fibroid tumors that have been causing me some difficulty and they want to make them go away. So I was consulting with some of the "Family members" and they suggested that since I haven't had the extensive arteriogram yet, that I should call my neurosurgeon and see if it would be wise that I have that done possibly before the hysterectomy. So this morning, May 24th, I called and left a message for him. His assistant called me back this afternoon and I explained the whole situation to her and she said they had a cancellation and she put me on hold. As it turns out...I am going up to Denver on Friday the 28th to have the arteriogram done by Dr. Comfy and Dr. Breeze.
I am still in shock because it will be done so quickly. I was expecting like July or August. The only bad thing that is bad about it...I need no complications because my son David is playing in a Memorial Weekend tournament and he needs me to be there. He has double headers on Saturday and Sunday. And if they win they play the Championship game on Monday.
Keep me in your thoughts and prayers. I would really appreciate it.
Hugs and luvs -
Update: 8 June 2004
I finally heard from the neurosurgeon's Physician's Assitant and I guess I need to update the narrative. I don't like to have to do an update like this. I never in a million years thought I would have to do one like this.
I went in for the Extensive Angio/Arteriogram last Friday, May 28th. It was extensive alright, took about 2.5 hours, I guess. They knocked me out for this one. I can remember them asking if I was ok, periodically and telling me to take a deep breath and hold it, etc., when they were taking pictures. Well, when it was finally over, they let my family come into the procedure room and I sort of woke up and looked at the screens and Dr. Comfy said, "Yes, that is pictures of your brain." I saw 2 dark areas, but he said nothing and I was too groggy from the drugs to ask.
He came down to the recovery room and told me the news. "Sandy, we found a residual avm and an aneurysm." When I proceded to ask questions, he kept saying, "You need to call Dr. Breeze." I asked about 3 or 4 and that was his standard answer. Well, guess what??? It was Memorial Weekend. Do you think I could get in contact with him?? I DON'T THINK SO! So, also, since Mr. wonderful neuroradiologist didn't believe in Vasoseal, I had to lie in the recovery room for almost the entire 6 hours.
I got my usual awful heartburn. This time I got it during the procedure, not just afterwards. I started popping Rolaids the minute they got me hooked up and "comfy"...yeah right! being a bit facitious here! hahahaha. After taking about 6 of them, they did nothing to relieve the agony. I popped 2 Pepcid AC and it eased up, after hours and hours of agony.
I begged the nurse to let me go home early. My in-laws took me up to Denver for support, and my Mom-in-Law got some kind of bug and was sicker than a dog, out in the car and I wanted out of the hospital, desperately. My daughter Heather had the same bug. She had gone camping with Don's brother and sister-in-law and was on her way home, because she was sicker than a dog also. My nurse, Eileen, was the nicest lady, but would not bend. She could not let me go early. She was petrified that the femoral artery would kill me. She, finally let me up to go potty at about 5:30. I showed her I was fine. So they let me go about 15 minutes early. Whoopee!
We still had an hour drive home from Denver! And then being the Friday before the Holiday weekend traffic was not pretty on the interstate. But we finally got home and I sent a disturbing email to the "family members" I started getting bunches of IM's. I informed everyone of what Dr. Comfy found...the next step was to get in touch with my neurosurgeon to see where we go from here....I figured it would be a matter of time.
Well, as I said in my prior update...I had lots of baseball action to attend over the Memorial Weekend and guess what??? I WENT TO ALL 6 GAMES!!! I told you I would!!! I got up that Saturday morning at about 6 AM and went out on my front deck and felt absolutely wonderful. I wasn't sore or stiff. I thanked God for me feeling so great. I took my coffee out on the deck. It was a gorgeous morning-already about 60 degrees, clear and sunny. I was just sooo happy and excited. Academy Little League AAA Major Division Yankees kicked bootie. They played 2 games on Saturday, two games on Sunday and two games on Monday and won ALL of them. They are the 2004 Champions. And I am proud to say, this old Momma was there for all of them. I may have sat there with my leg elevated and got a tad sunburned, but I yelled and cheered and was very proud of 12 boys and their coaches for winning over 6 other very competitive teams. WHOOO HOOOOO
Now our next mission is....we wait for Dave to go to All Star tryouts on the 11, 12 and 13th of June. I will mention more about this in a minute. Ok...now a little more about me... :-(
Of course, it being a holiday weekend, I knew I wouldn't hear from my neurosurgeon. I did call and leave a message for him to call me because I had questions about the "residual avm and aneurysm" So I proceded to start writing them down.
Typical doctors, I waited almost a week before I got the call back. The physician's assistant called, which was fine. I enjoy talking to her because she usually answers all my questions completely and throuroughly. I asked things like, where is the avm located..."in the same area as before..the occipital, but it's only 1 to 1.5 cm in size. Ok, good answer. Then I asked about the aneurysm. "it's in the middle cerebral area near the temple and it's .3cm" Well, to me, .3cm is really tiny and it's on the same side as the avm, so that sounds ok too. Next question...what does the doctor want to do about them? "Dr. Breeze would like to do a crainiotomy." and then she kept on talking.
I kept on listening and I think I was sort of listening thru a wind tunnel. The word CRAINIOTOMY kicked me in the gut!!! I sat here at my desk chair, in front of my computer, jotting down notes and listening in a fog. I am almost 3 years post op from an AVM bleed and feeling really about 85% me again and she hits me with that word. Oh my gosh...my heart is in my toes, my breathing is nil, I am not sure what the other feelings are at the moment...I am just explaining to her that I can't do that right away because of my son possibly making the Little League All Star team, etc. etc. etc.
I, finally get off the phone. All notes neatly jotted down and I sit here for a minute, take a deep breath, walk outside onto my deck and just stand there. I walked past my husband Don, sitting on the couch and said nothing. I, immediately smoked a cigarette, which I knew was a no no, but did it anyhow. And just stood there, staring at Pike's Peak in the distance and not really thinking of much of anything except "how am I going to tell everyone that I love that I have to have my head opened again?" I don't know if the real family and the cyber family can take this news. I wasn't sure if I was taking this news.
My first crainiotomy was not planned. I had an unknown AVM that bled and I was out and had no knowledge of what was happening. Now this time, I know. I have been supportive of soooo many "Family Members" that have AVM's and Aneurysm's and I push them along to keep the positive attitudes every day. And now, they are going to have to support me. Wow, I never thought I would need their support. The tables have turned and I am not sure if I like that. Ü (that's a smile) I am going to do my best to keep my positive attitude thru this, but if I need you, I know you are ALL there for me. Hope I won't need to.
I love you all and keep me in your thoughts and prayers. Feel free to email me. It make take me a while to get back to you if you are new to me, because the immediate "family" is about 35-50 strong...but I will do my best. Ü
Hugs and luvs.
Update: 17 June 2004
Just wanted to let you all know, David made the first cut of the All Star tryouts! WHOOOHOOOO!!!! Out of 30+ boys, it is now down to the best 18. Today they are doing a scrimmage game at noon to 3PM so the coaches can watch them in action. Then they will cut it down to 12 boys. We will get a phone call if he makes the team. I will be home waiting by the phone. waiting very nervously!!! OMG!!!! If we get the call, then we have a parent meeting at 8PM. I will update IF I get the phone call. — luv, Sandy
I wrote this on Tuesday evening after the call at 6PM MDT WHOO HOO.......David made the all star team. He is sooooooo excited. So am I. We went to the Parent meeting tonight and didn't get home until almost 11PM. I am going to make this really short. It's past my bedtime.
Just wanted you to know that they are going to work his little buns off for the next 3 weeks before the games begin. We will be traveling to Denver area 1st for the district tournament...when they win there, they go to State, which is in Grand Junction Colorado, about 6 hours from home...when they win there, it's off to Waco, TX. for the Regional tournament. When they win there, it's off to Williamsport, PA. for the Little League World Series.
Now doesn't that sound very positive?? That's the way the coach was talking to us tonight. Just wanted to tell you all like he told us. David Is An All Star! Whoo Hoooo! A very proud mom. — luv, Sandy
Update: 19 July 2004
WHOOOHOOOO!!!!!! DISTRICT 5 CHAMPIONS!!!! OFF TO GRAND JUNCTION ON FRIDAY!!!!!
Yep! They did it!!! 5-0, not a blow out, but a nice peaceful, sit on the edge of the bleachers win! It was great!!! Gotta pack our bags, we are out of town to win the State championship, keep your fingers crossed!
Also, Please keep Rachel in your thoughts and prayers. She is having her Gamma on Tuesday! Pray really hard for my girl...OK????
Hugs and luvs, Sandy
Update: 29 July 2004
Geez, have I missed all of you! After a one and a half hour rain storm delay on Tuesday night, the All Stars got to play the State Championship game. They got to play a team they hadn't played yet. North Boulder beat Monument in the Loser's bracket, so we played them. We thought it was going to be a really tough game, but we got ahead in the 1st inning and stayed there. WhooHoo. The final score was 9 to 1. Academy All Stars won the State Championship! We leave for Waco, Texas on the 2nd. Just a few days to get rested and then off we go again.
I don't like being without my computer, but Charyn will be taking her laptop with us again. Hope you are all doing well. I am fine, only a couple of little headaches. I hear Waco, is very, very hot. I hope I can deal with it. But I am fine, so don't worry about me. We are all so proud of the Colorado State Champions. When we go to Texas, the boys will be known as the Colorado team and will be televised periodically as Colorado...so look for them on ESPN, OR ESPN 2.
Just wanted to let you know, I, talked to Rachel on the phone when we got back to the hotel on Tuesday, also. She is still feeling very tired and said her head feels strange. She did sound good, but tired. I hear that is a very common syptom following gamma. We will be keeping in contact throughout all my comings and goings. She sends her love to everyone and will try sending some emails as soon as she can.
Hugs and luvs, Sandy
Update: 29 July 2004
While keeping you up to date with my son's baseball tournament action, I almost forgot to update on me. Yesterday July 28th was my 'THIRD BIRTHDAY". Wow! I can't believe it!
As we were doing the 5 hour drive down from the tournament, I realized what the date was and wished myself a Happy Birthday. My eldest daughter and I discussed it very briefly. She said that she didn't want me to have to do it again, but I explained that the neuro feels it is necessary and I trust him with my life.
Well, this morning I get a phone call from Susan from the neurosurgeon's office wanting to set up my pre op appointment. I get a really sick feeling in my tummy. I have been feeling soooo good, with the baseball high, and physically great, except for being really tired from all the activity. Then reality hits me right in the face....DANG IT!
I am about 43 days away from my 2nd crainiotomy, which is probably going to knock me back to square one again, just like 3 years ago, yesterday. To that, I have a few choice words, other than DANG IT! So we make the Pre op appointment for the 1st of September. She wanted it for the 25th of August, but we could maybe, possibly be in Williamsport, PA. at that time, so I wouldn't schedule it for then. So September 1st it is. Nine days before the surgery. I am going to try and catch Dr. Breeze at that time. I have a few questions for him too. I just really want to know how sure he is that I will be the same me that I am now. I feel so close to normal, except for the vision thing and the memory thing....other than that, I feel pretty darn good.
For right now, I am just going to concentrate on Little League Baseball and pray that the Academy All Star team, now known as Colorado team makes it to the World Series, but for now they are going to Waco, Texas to play in the Regional tournament to try and qualify for that. The only game that will be televised is the final game, which is on the 10th of August on ESPN2, which hopefully will be the Colorado team plus whoever wins in Pool A. I will update asap...win or lose. I will be updating or having someone in the family updating after the surgery as well.
Thank you all for being my family and giving me the best 3 years of my life...the best love, the best support and the best strength to pull me thru. I love you all.
Update: 25 August 2004
Hi Family,
I should have sent this update a couple weeks ago, but I have been really busy...so sorry.
My son's All Star team won the District Tournament in Denver, then won the State tournament in Grand Junction and then we were off to Regionals in Waco, Texas, representing Colorado in the Southwest division. I will not elaborate too much on this because the team didn't fare too well once we got to Texas. It was really hard for the boys to play in 105 degree temperature with 100% humidity. We had a hard time with that, because we don't have that here in Colorado. The teams from Texas, Arkansas and Louisiana were more aclamated to that, so they got eliminated quickly, but that is alright. We found out that out of 800 teams that were fighting for the position of Southwest division...Academy Little League was one of the 8 teams that was there. It was an honor and a priviledge to just be there and represent Colorado in that tournament. They had nothing to be ashamed of. They could still hold their heads high and know they were still District 5 and Colorado State Champions. And it was a once in a lifetime experience to be there and they got it! Something those 11 boys will remember for the rest of their lives.
Ok...we have been home and I have been putting all my ducks in a row, as the saying goes. Got the kids ready to go back to school...did all the Back to school shopping, and off for the 2004-2005 school year. I have been cleaning the house in places that hasn't been cleaned in many years. Catching up on laundry chores, like doing sheets and bed spreads and blankets out of the linen closet and stuff like that.
When we came home from tournaments, in between State and Regional, my crainiotomy date had been confirmed. I felt I had many things I wanted to do once the dust settled, so that's what I have been doing.
While we were gone, some person backed into my van, and left a nice huge dent in the drivers side rear panel...while it was parked in the street where it always sits. You could even see the word "Bridgestone" from the tire where it was on the rear of the vehicle that hit it...an SUV or something with the tire mounted on the rear...so we have been dealing with that, as well. And, of course, the person that hit it, didn't leave us a note or anything...
So anyhow, on the 1st of September I am going up for all the pre op stuff and going to have #2 crainiotomy on the 10th. Alrighty, family...honesty time.... I have doing a countdown thing......I was fine when we were baseballing, I was busy and didn't have time to think, but now reality has set in and it's the 25th of August and this little momma is getting a little nervous.
The "Family" says, I will be fine-I KNOW THAT!!! Those of you, who KNOW me, know my positive attitude. It's just, when I went for this before, it was an emergency situation and I didn't know what was going on and this time, I have to walk in there— I dunno-it's going to be a little tougher for me. I felt pretty good after the surgery, but didn't like the after effects of the anesthesia for many days afterwards. Well, I guess if they have to drag me into the hospital, kicking and screaming...I am going on September the 10th.
You know, gang, for all of you that REALLY know me, you know that I can't go anywhere-my mission in life is to help and give support to people on this site. I was never very knowledgable on the subject of aneurysm and clippings, but I will know more on this subject when this one is done.
I love you Family, even those of you that I haven't
met yet. LIFE IS AWESOME! Reach out and touch someone on here...you
will find it very rewarding. Making friends with someone who needs
you...made such a difference in my life, it surely will in yours
too. There are sooo many people in this Family that needs someone.
Be that someone. I tell you what...if I hadn't been given a
computer by my daughter Charyn and discovered this site back in
2001 I don't know where I would be.
KEEP PLUGGING ALONG
SHARE YOUR LOVE
SHARE YOUR COMPASSION
and remember... I'LL BE BACK!!!!
Hugs and luvs, Sandy Guillaume
Update: 7 September 2004
I went to the pre op appointment for my upcoming surgery on the 10th of September. All sounded really good. I got really good odds, I thought. 1 to 2 % that I could have a stroke and 97 to 98 % that I would come out equally as good as I am right now. Well, Family, that sounds good to me.
They did find a heart murmur that they are a little concerned with. I am going up to University for a Stress Echo Cardiogram on Wednesday to have that checked out. I think it is just a precautionary measure to be sure if they need a cardiologist on hand. I sent an update to my closest friends and told them that there may not be any room in the operating room, because with the neurosurgeon and his staff and all the Guardian Angels that will be in there, the heart doc may have to squeeze in or just be on call. [grin]
Anyway, I am feeling pretty good about having this crainiotomy done, I guess....it sure is getting close...Friday the 10th is coming up really soon. Please keep me in your thoughts and prayers. I will update as soon as I can. My daughter Charyn will send an update to Dr. Bill as soon as she can. She is bringing her laptop with her.
God Bless you all, my dear family, and I love you.
Hugs and luvs —
Update: 25 September 2004
It has been 2 weeks to the day since the big surgery. Charyn and Rachel have been updating all of you and I thought maybe it was my turn... I have been on the computer little bits at a time, just trying to say hello and keep my inbox sorta cleaned out in case any of you wanted to send me a little hello.
You will have to refer to Charyn and Rach's emails if you want to know anything about the surgery or very much about the hospital stay, I don't remember hardly any of that. (but that is ok) I can let you know that I came home on Wednesday, only 5 days after major brain surgery. We were all kind of surprised that I was set free so soon, but I guess once you are coherant and able to motivate on your own, somewhat, it's out the door!!!
I was given strict instructions to do ABSOULUTELY NOTHING!!! That is what I have been doing...the one thing I have learned to do really, really well is NAP...I can lie down and sleep for 2 to 3 hours without any problem. My goodness, then I can go to bed for the night, somewhere between 8 and 10PM.
Ok, here is something that is going to make all of you really happy. No Major headaches! I can't quite believe that myself. The PA gave me a scrip for some good meds before I left the hospital, for "just in case"....well I have taken only one of them. I have not had any serious pain at all. The only reason I took one, was to see if I could get a good night's sleep and not wake up during the night. (it didn't work, so I haven't taken anymore)
The only pain I have is a dull ache on the right side, where the aneurysm was clipped. I can't even call it pain, it is an ache and it is not constant. I feel it sometimes when I chew and I know when I have laid on that side of my head at night, it aches then.
I am pretty impressed with how I feel...the worst part of this whole ordeal is TIRED, NO ENERGY and NO STAMINA.
Doc said it will be 6 to 8 weeks recovery.....I feel really good, but I don't think I will be running any marathons in even 8 weeks, but I sure don't feel like I have been thru major brain surgery with 2 separate incisions. Everyone I talk to on the phone said I sound sooo great. I sure haven't changed.....I sound just like me, still have the same sense of humor and lack of quick wit....hahaha
So, all, I am doing good, 2 weeks post op....just thought you'd like to know.
Update: 7 January 2005
I was sitting here reading updates and I felt it was time for me to update my narrative again. I know I sort of did that a little while ago, but I need to do a few more details.
When I had my second AVM surgery and my first Aneurysm clipping back in September, I was afraid of only one thing...I wanted to come out of everything JUST BEING THE SAME OLD ME and not to have a stroke. I wanted to continue my rewarding position as a volunteer at my local hospital, "working" in the gift shop. I am such a huge people person.
When Candy suggested my getting out of the house last spring, I really didn't know if there was anything that I could do. I didn't have the strength and stamina to go back to a REAL job, she said VOLUNTEER. I started the procedure and asked to work in the nursery, rocking babies and doing neonatal hearing tests on newborns. I thought I would enjoy that immensely. When I went for my orientation, the director discovered something in me that I had forgotten I had...... PERSONALITY.
She told me that I needed to work with the public and she had the perfect place for me..the hospital Gift Shop. She said I would be a waste if I were in the nursery. So, starting last April, I have been working one or two days a week in the Gift Shop in the largest hospital here in our city. (it is the same hospital that I was air lifted out of when I had my AVM bleed) I made it a point to meet the Flight For Life team and go up to the roof to see the helicopter. (that was a treat for me too) I am in my element, talking to people, being friendly and enjoying what I do. And what a rewarding position...all of our money goes right back into the hospital to help fund grants that the hospital needs. We pay for things like blanket warmers, physical therapy equipment etc....so rewarding!!!! Now to get to the AVM/Aneurysm part...after my surgery in September, I healed so quickly and felt so remarkably good almost right afterwards.
I had the surgery on the 10th and came home on the 15th, which was a miracle, considering I didn't come out of the anesthesia for 3 days. I guess I needed a long nap afterwards.
The first day that I woke up, I had a major scare...I tried to talk and my words were all garbled. I could not speak! I stood up and tried to walk and my feet only shuffled, I could not put one foot in front of the other. I told the nurse that I had a stroke - she would not answer me. They brought me some food...I tried to eat some jello and kept dropping it all over myself. I dropped the spoon on the floor. I picked up another spoon and did the same thing. I tried to eat some soup and the nurse put it in a cup and gave me a straw. That frustrated me. I, once again tried to eat the jello because all I wanted was something cold because my mouth was so dry, I dropped that spoon, as well, and the jello laid on my hospital gown. By this time I was really mad. I tried to bend over to get the spoon...I was hanging over the edge of the bed, almost falling out, when someone came in to rescue me. I don't remember who! I kept asking if I had had a stroke and no one would tell me anything!
I reached for the ice water and dropped it on the floor, spilling it everywhere. I was so mad and so frustrated! I couldn't do anything, couldn't hold anything and couldn't get any answers from anyone. I was really pissed off!!!! (pardon my French)
The next day, my speech was back to normal, that was a shocker. The physical therapist decided to try and get me up. She got me standing, and I felt dizzy and wobbly, but better than yesterday. She got a walker and off we went. We walked around the nurses station twice. I staggered a few times, but nothing too serious. I felt pretty good about that. After she left, I got out of bed and tried to walk over to my hubby, who was sitting in a chair at the foot of my bed, I lost it for a minute and hit the deck. Nothing serious, but he caught me. I was just so dang weak and wobbly. The PT came back in to see if I could lift my leg, as if I were getting into a shower. (making believe I was stepping into a bathtub) I did alright, I guess with those exercises.
My neuros PA came in and said the PT said I was doing pretty well with my walking and asked me if I wanted to go home. I had only been in the hospital for 5 days and awake for 2, I was surprised she had asked me that question. I said I was. I don't know if I really was ready, but I sure don't like being in the hospital, plus my husband Donny having to drive 130 miles round trip every day was horrible for him. I should go home. So Amanda did all the paperwork and within an hour or so, we would be on our way back to the Springs.
I really did feel pretty good coming home. I was tired out. All I wanted to do was nap. Charyn came over and stayed with me everyday. It was nice to not have to worry about the phone or the door. I received lots of flower bouquets and tons of phone calls. She handled all of that. I got to relax and not have to worry about the kids either. I recouped quite quickly, I thought. We filled my prescription for vicodin and out of 20 pills, I only took 1. I thought maybe I would get a complete night's sleep, but I didn't. My nagging pain where the incisions were would wake me several times during the night because I wouldn't stay off off them. I always sleep on my right side. I didn't have any headaches, at all. Every once in a while I would get a twinge pain, which I would say was telling me that I just had surgery.
Other than that, nothing! I was amazed! I was invited to a luncheon in honor of our boss from the Gift shop and I was determined to go. I rsvp'd, but told her not to tell anyone that I was coming. I wanted to surprise everyone. I showed up at Karen's house and I did surprise the crew. No one expected me to be there. It had been 7 weeks at that time. When my boss asked me when I wanted to come back to work, I told her that next week would be fine. She put me on the schedule and I was ready. No one could believe that I was!!!
That job is what is keeping me going right now. The sociability and the friendliness of everyone. If I were just vegging at home, I don't think I would be doing as well as I am. I still have my AVM/Aneurysm family and always will, but having real contact with real people is the BEST too. I sure need that in my life!!
Hope everyone had a spectacular holiday. Happy New Year to all my friends and Family on this site. I love you all.
Hugs and luvs —
Update: 8 June 2005
Have I got a great news Update...[huge smile] Last Wednesday, June 1, 2005, my husband and I made the long trek to University Hospital at the crack of dark. We had good weather and no hints of Denver rush hour traffic, it was a good sign. I got all checked in and ready to go for my, what I was hoping, was my last angiogram.
Dr. Breeze's super spectacular neuoradiologist came into the room and gave me my little pep talk and told me this one would be a long one, because he was going to look in every nook and cranny of my brain. I figured as much, but that was okay. They gave me my shot of bennadryl in the IV because me and the contrast dye have a real problem with each other. On Tuesday I took predisone as a precautionary also...it's a steroid to prevent any problems with the dye, as well. Anyhow, the procedure took 2 and a half hours this time, which was alright.
When he first started the procedure, we had a couple of ooopss's. The guide wire went a couple different directions...major oopsyy, but he got it going correctly and all went perfectly after that. Once he got done taking all his films...he looked them all over for a while and before I even got taken to recovery, we looked them over together and guess what????? NO SIGN OF ANY AVM AT ALL and better still... THE ANEURYSM HAS DISAPPEARED COMPLETELY!!!! I am free and clear of everything!!!! BOTH of my neuro docs have released me! I am free and clear! WHOOOHOOO!
I am soooo excited...none of you can imagine the happy face I have been walking around with since that day... He showed me the angio pictures and there are no spots of anything!!! I am the happiest of happy girl...
I want you all to know, I am still here for all of you, no matter what, and ALWAYS will be! I will continue to update periodically...I will not go away...[grin] I love you all and thank you family for the site, the love, and everything!!! Please email me for anything...
Huge hugs and huge luvs.
Update: 27 July 2005
Here it is, my anniversary of my 4th birthday. WOW! Hard to believe. It has been a long 4 years, but it's really gone by quite fast, I guess. Been thru a lot of stuff in all these years. I felt good, felt bad. But the best thing of it all is all the friends and "Family" I have made. That is the greatest part of it all.
I know we all felt alone at one time or another, thru this horror, whether we be AVM'er's or Annie victims, but then someone reached out to us, from Bill's World and we were no longer alone. We had a friend. As time passed, we were a Family member. I have sooo many brother's and sister's from this site, it is amazing. My world is a much better place since I became ill. Thank you, Family, for this wonderful site! Thank you Family, the past 4 years as a survivor have been the best!
Strange words for an update?? I don't think so..... God Bless you all.
My mission in life is to meet more of you. Please feel free to email me. I have lots of room in this big heart for more Family who needs me. I was given a clean bill of health this past June by my neuro's and I just want to help anyone in need of someone who wants to talk or whatever. I will always be here for you.
Hugs ~ Sandy
Update: 17 August 2007
I have noticed so many of you have updated your narratives fairly recently and here I sit, it's been since 2004. "I THINK IT'S ABOUT TIME!"
I keep in touch with many of the close knit "Family" members. Kim, Susan, Candy, Rachel, Marylee, Sandi, Marie, Eddie and Loretta, just to mention a few-unfortunately, I have been too busy to make any new friends. I don't spend as much time on the computer as I used to.
I volunteer at the hospital gift shop 2 days a week.(thanx to Candy's suggestion) It is the best thing I've ever done. I met so many wonderful people there. It brings such joy to my life. After my surgergery in 2001, I wasn't recouping as quickly as I hoped I would, but when I did start feeling like I was "almost" Sandy again the walls started closing in on me. I wanted to do something to get out of the house, but at that time, I was still not driving and was not very sure of myself. I just knew I had to get out of here before I went totally bonkers. My PCP had put me on anti depressants. I didn't know I had any problems, but she did. I was at an office visit when she asked me one question. "Sandy, how are things at home?" I said, "ok, I guess. I cry at the drop of a hat. I scream at everyone for no reason and I haven't killed my husband yet, so that's a good thing!" LOL On the meds I went! She explained seratonin levels etc. And I've been better ever since. [big grin]
Now, back to Candy. She suggested since the doc told me that I couldn't go back to my past life where I was a retail merchandiser for Hallmark cards..(couldn't lift or throw around the boxes of greeting cards anymore) I should look into maybe volunteering. WOW! Awesome idea! I never would have thought of that. I found the perfect job for me...neonatal hearing testing for newborns at the local hospital. Surely I could lift a newborn baby. [grin] I went thru all the procedures, online applications, etc. My daughter Charyn took me for the interview. There were 7 or 8 of us there for the original first interview...I filled out a bunch of paperwork...I got a bit confused, at first. Comprehension thing was still a huge issue. I explained the brain surgery to Sandra, the interview lady and made light of it, as I tend to do. When she was looking over what we wanted to do and listening to all of us chit chat, she handed out some available positions and told me that all the baby positions were filled..BUT...she noticed that I had a "sparkling" personality and wanted to put me in a place around the public.
Her first suggestion was the information desk - I read over the paper and it was NOT for me. I would have to work with the phone system and computer system and I was not sure I could do that with my brain getting all confused and messed up. All that information would get lost in the holes, so I told her I could not do that one. My next option was the Gift Shop. I had 2 choices on that...the hospital closest to my house only needed evening workers. I did not want to do that because of my children. My son, who was young at the time played Little League baseball and I never missed a game! Evenings were out of the question. I figured that not driving myself, Main hospital could present some problems, but that was my option until something else came up at Community. My only doubts for myself were me messing up on the cash register. I worked with money for years and years as a bartender and waitress in the past and I figured if my holey brain had no problems with this endeavor I would be fine. To make a long story short, I didn't mess up and the rest is history. It is now 2007 and I am still there. Ü
My boss, Marge gives me time off for baseball, tournament travel, which during 04, 05 and 06, there was a bunch. [grin] My son David is one great baseball player. He's now almost 16, playing in high school and working toward earning a scholarship, I hope.
Almost 2 years ago I took on a part time REAL job. I got in contact with the disability people first, I sure didn't want to mess that up. I had heard of people working while on disability and I wanted to make a few dollars because there are some rocky spots in my marriage. After all this time and with me feeling more like me again, my husband started making wierd accusations. He thought I was having an affair. YEAH RIGHT!!! I couldn't even get on the computer without him being suspicious. Oh, well...we won't get into that nonsense.
I loved my part time Market Research job. It was great fun and paid well. Gave me a good sense of independence. I worked 3 days a week and did 6 stores. But 2 weeks ago our market shut down and we all were laid off with no notice. That was a kick in the head!!! No warning, no notice, no nothing, just NO STORES...NO JOB!! I am in the process of trying to find something because staying at home is NOT my forte'. I can't do it! It makes me nutso!!! Oh, I gotta back track some...
I became a Great Grandma in June of 2006. My granddaughter Tiffanie blessed me with Gabriella Ashlee Joyce. She was born on the same day my mother in law passed away. You all know the saying that goes something like God gives us a new life for one he has taken. That is where Gabby got the Joyce from in her name. That was my mom in law's name. Tiffanie added it to Gabby's after Mom passed. Gabby is the most precious angel that came into GG's life. GG stands for Great Grandma. Cute, huh? Well then, this year on June 26...Gabby's birthday and 1 year to the day of Grandma's passing, my daughter Heather gave birth to a baby girl named Audrey Ann. The Ann came from Grandma's middle name. It was Joyce Ann. Since Gabby got the Joyce. Audrey got the Ann. June 26th is one of the most wonderful, blessed days in our life from now on. It is also, my cyber daughter Rachel's birthday. from the narrative, (Every Day I Live In Fear) Wowwy! Amazing how life goes.... I will post baby pics sometime in the near future!
I hope you are all doing well, my dear friends and "Family" I am...physically doing ok. I do feel that since I haven't been checked by any neuro docs of any kind since 2005, I think it was, I should!!! Since I got rid of my neurologist, I will find a new one. I have a neuro doc at the hospital that I trust completely and he recommended one that I will make an appointment with. I pray you are all doing well and are happy. My angels are all watching over you. If you need anything or just want to chat...please email me.
Big hugs and luvs ~
Update 26 October 2008
It has been forever since I have updated my narrative. So many things have gone on in my life since August 2007. Well, let's see. I am still working in retail...I am the permanent "Fitting Room" lady. It is much better than being a cashier. My bosses said I am "too friendly", if there is such a thing. LOL Well, back in the fitting room I can chat with the ladies and not get criticized for being TOO FRIENDLY. In all my years of working with the public, I have never been told that. SHEESH!!
My Gabby (great granddaughter is almost 2 1/2 and last March she had a baby sister. Londyn Lyn. Oh my gosh, she is something else. Such a cutie. My Audrey is 16 months old now and is awesome. We babysit her occasionally. She is starting the "Terrible Two's" at her young age. She sure does test Grandma and Grandpa.
Heather is working and going to college. She and Matt have joint custody of Audrey. Heather is going to PIMA MEDICAL INSTITUTE and studying to be a Medical Assistant. I am so proud of her. All her life she wanted to be a cosmotoligist but changed her mind and decided on a medical profession. She is busting her butt. (and to think her father didn't even think she would finish high school) HA! SHOWED HIM!!!!
I don't really want to get into him, but maybe just a little...He is still not very supportive of me or David. He was so good with Dave until he got into high school, then all went to pot. He quit supporting his baseball financially and verbally. When Dave does well at a game, he barely tells him. (maybe occasionally) if he has a good game pitching or made a great play. He is constantly putting him and I down for everything we say or do. Sure is getting old.
I don't know what he'll do if I make the major decision to move out. 20 year marriage could go straight down the tubes and he will be a lonely old man. O'well, c'est la vie.
Heather and Matt split up last July. He got a little crazy and that was not a good thing. He is regretting all he did to lose her. O'well, too bad!
I found a new Neurologist back in July. My first visit with him was a good one. I liked his style in the office. He is in the same offices as the awful one that I got rid of. This one did a bunch of neurological tests in the office, then he scheduled a bunch of tests for me, just to make sure everything is good with me. No one has looked inside my head since 04. May as well see how I'm doing. He also had me check on my heart, my lungs and other stuff. I had a CT, and EEG, EKG, Chest Xray, some spine xray (yesterday). I got calls on my results...the CT was normal, the EEG was fine, my heart looked good, the chest xray was fine...(no lung cancer) I am a smoker. I don't know what the spine xray thingie was. He was checking a lot of things because of my occasional headaches.
I have seen my PCP within the past couple weeks and we discovered something I hate. I now have developed high blood pressure. Geez, I turned 60 on the 14th of October and my blood pressure goes up. I have always had the blood pressure of a teenager, as my doc always said. She told me that most women get high blood pressure by the time they are 50. She said I went 10 years longer than most. YEAH RIGHT!!! I don't need that in my life...one more pill I have to take now.
Oh well, I will be fine. I am too ornery for anything to go wrong with me. Anyway, I am not going to make this much longer. I am still kicking and being a brat. I am still the Angel Friend in the hospital gift shop and feel really good. I am still working, as I said. I have 3 babies to take care of and baseball season will be coming up in the Spring. Too many things for this old broad to do. No time to get me down. (big grin) Always have a positive attitude and you will always keep going.
I love you all.
For those of you that I do not know....Keep going, think positive and my Angels will watch over you.
hugs and luvs
Update 25 March 2009
Hi family.
Just wanted to tell you all some very exciting news. I got a phone call about a week ago from my oldest son Tony asking me if I wanted to make a trip to the east coast.
I have not been "home" since I was sixteen years old and I am pushing 61. Long time, huh? After a few minutes of contemplation, I said few expletives and then YES! Well, he is handling all the arrangements and I am getting on a big bird on April 8th and flying to Boston to see my sister, brother and all my neices and my nephew. I emailed the family and they are all beside themselves with excitement.
I want you to know, if I don't have a heart attack, panic attack or anxiety attack on the airplane, I will have the best time ever!!! LOL For those of you who KNOW me, know I don't like to fly...so this is a real challenge. We are all getting up there in age and Tony figured it was time I saw them! He and Charyn, my eldest daugter have never met my side of the family. Charyn and I had a road trip planned back in 2001 when my AVM bleed occured. Needless to say, the road trip never happened..
I only be gone for 4 days. That is all the time Tony can take off work. We will be in Boston area and Providence area....going to spread ourselves a little thin, but see the whole family. I will update when we get back and let you know how it went.
Have a Happy Easter!!!
Love You All!
My daughter, Heather's narrative.
My oldest daughter, Charyn's narrative.
Discussion, comments, or questions: Sandy Guillaume
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