NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
University of West Georgia Disclaimer
Sandy, Ali Vincent, Elaine
First Grandson, Brayden Anthony
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!
Update 23 November 2009
I have owed an update clear back since last March, I think it was when I took my trip back east. I am so bad! I have been so busy in life that I haven't had time to sit down and fill you all in on my goings on.
First of all, you would all be so proud of me. I was almost panic stricken with the thought that I had to get on an airplane and fly from Colorado to Boston. The last time I was on a plane I had the worst panic attack ever.
We boarded the plane and I was fine. My grown kids and I flew from Denver to Chicago. I was not the least bit nervous. I didn't have any shakes or trembles. I did have to go outside with Charyn and have about two cigarettes before we had to board the next plane for Boston. I was so proud of me. I figured I would have a heart attack and never get back east to see my family. It had been 40 plus years since I had seen any of them.
I was so excited. When we all went to dinner that first night it was amazing. My brother looked exactly the same. He had not really changed at all, even though it had been so many years. My nieces had grown up, but I recognized Phyllis instantly. She was outside the restaurant and I knew it was her the second I saw her when we pulled in the parking lot. We had the greatest dinner at a seafood restaurant on the wharf at Revere beach in Revere, MA. It was so great. We sat there and caught up on stuff and took numerous pictures of all of us. My namesake niece Sandy and her husband were wonderful, as well.
When I left the coast Sandy was just an infant. The two sisters were fantastic. They were so thrilled to have their Auntie there and their two cousins that they had never met. Charyn and Tony were equally as thrilled. My brother Carl sat pretty quietly...he was kind of in shock that his little sister was really there. He lost his wife several years ago and he kept saying that Anita would have loved to have seen me. I miss her so much. She was awesome!
There is one more niece, but she would not come to dinner with us. I didn't get the whole story about why not, but we all figured it was her choice and her loss. I wished she had been there with us, but that's ok.
Enuff of that. The next day we headed down to Providence, Rhode Island. The state and city of my birth. We went around the Cape and stuff before heading into Providence. The east coast is gorgeous. It had been so long since I had seen the ocean. We checked out a lot of scenery on the way there.
When we got there I wanted to go to Federal Hill. It is a famous area where all the Italian stores and such are. My brother in law scared me to death when I first moved back there when I was 13. I hadn't seen snow since I was a baby, so we did donuts on Federal Hill. Oh my gosh, my California upbringing and then that!!! Snow was scarey!
My niece, Francine's boyfriend came to pick us up at our hotel and we got together at the most wonderful Italian restaurant. When I was younger I lived with Fran's familly. My sister Barbara, her husband and my baby nephew Bobby. When I moved back to CA. Bobby was an infant. My sister Barbara's husband Louis was very, very strict. I lived with them for a while, can't remember how long. I hated his strictness...moved out and went to live with best friend and her mom.(then moved back to CA)
Anyhow, to see my Italian familly...WOW!!!! My sister is in a wheelchair because she can barely walk because of congestive heart failure, but she looks wonderful and she is sharp as a tack for being 80 years old. She was talking about all the boys that used to have crushes on me!! Then there is my nephew...Bobby got diagnosed with MS several years back. He looks exactly like my brother in law Louis. He has lost so much weight from all the pics I have gotten of him over the years. He was so in awe of seeing and meeting me finally. He had always wanted to meet Tony, my son. He always wanted to live Tony's life since he was younger. Bobby was a chef, so was Tony. But Tony worked for Club Med, in the Caribbean, he traveled all over the world and Bobby has always been in Providence.
I was so happy they finally got to meet. I was so thrilled I got to see Bobby after all these years.
I will be going back!! I am going to save my pennnies and fly out there again!!! Our trip was so short because of Tony's job, but I will go back and stay longer! Now I know I am not afraid of flying!
I will stay in Boston and Providence an equal amount of time!!! We are not getting any younger and I need to do things for me and my family!!! Ok, then my next adventure:
In May of 2009 my son Tony at the ripe old age of 39 decided he would tie the knot. He met the most wonderful lady and asked her to be his bride. Originally, they had planned to get married in Mexico, but the swine flu had started coming on and the plans changed to Las Vegas. He got us tickets for Vegas and off we went again. This time Heather and David, my two younger kids got to go.
We stayed at Mandalay Bay hotel. Oh my gosh, what a paradise! This place has a wave pool, it's own beach, 3 or 4 regular pools and is absolutely amazing! We had a fabulous time out there.
Tony and Mary got married in a beautiful suite overlooking the strip and it was fantastic. It was just immediate family. Very simple, very quaint and just exactly what they both wanted.
They decided that if they had gotten married here in Colorado in the mountains where they lived, it would have been a drunken bash and neither of them wanted that. So it was perfect!
Since the wedding things have been indifferent in our lives.
I have been very healthy except for one little bout of the flu. I have had both flu shots, so I refuse to get sick. I don't have time for that nonsense.
I still volunteer at the hospital gift shop. I love that so much. I can be me there! I am still working at the clothing store and been locked up in the fitting room for a year now. I am so burned out in there. I really need a change. I have been searching for another job. I gotta get outta there.
I can sure tell the economy stinks! It is impossible to find something else. Even when you have an interview, you don't get called back. I don't understand. Makes me sad. I am not going to be a fitting room lady for the rest of my life. There has to be something better out there for me.
I am not going to let this be the death of me. If I can survive and AVM and an aneurysm, I can survive job hunting.
Ilove you all.
Have a Happy Turkey Day and Merry Christmas and Happy New year.
hugs and luvs,
Your angel friend,
Sandy
Update: 2 February 2010
Did you know that high blood presssure can cause brain damage, just like an AVM or an aneurysm???
As of last Wednesday, the 27th of January 2010 I learned something I never knew.
After 22 years of marriage, I got my husband to go to a doctor for the first time since we've been married.
Since Sep1tember I have noticed strange things happening to Donny. He stopped eating for 3 weeks. When he did eat, he would vomit. One day we went to the vets office and when my son and I came out with the dogs, Donny decided that David had to drive home because something had happened to his vision. That was the start of this nightmare.
I was sure at the things he was describing to me that he had had a stroke. I told Dave to drive to the hospital....Donny refused! He was adamant about not going! When we got home he could barely get out of the car and couldn't hardly walk into the house. From then on, things went downhill.
He stopped eating. He slept all the time. The memory issues got horrible. His vision was all screwy. He started talking crazy.
In the past couple of weeks, since about the 18th of January other things started happening. The left arm got wierd, the left leg became extremely weak. His walking got worse. He had been shuffling around horribly, like a 90 year old man. (he is only 49) He is 12 years my junior. teeheehee, I robbed the cradle when I married him, many years ago.
Well, to cut this kinda short...he promised his family and me that I could take him to the doctor on Wed. the 27th. I took him to the ER after alot of hemming and hawing and trying to back out. I put my foot down he he did NOT back out!
When we got there his Blood Pressure was 245/179. That is sooo high and very, very bad!!!!
After 2 days of ct's and mri's I found out that having high blood pressure for many years and letting it go untreated caused many blood vessels in the brain to rupture, causing brain damage. The problem is, to date, I don't know how much damge yet.
He is an alcoholic and has been drinking beer every day of his life for I am not sure how many years and he is experiencing the withdrawls from the alcohol, so he is in the hospital and has been since Wednesday. He is delerious, talking out of his head, seeing things, not knowing what's going on, just babbling, getting angry, becoming extremely aggitated at everything. He keeps trying to escape, but can't get out of bed because they have the alarm on the bed set. All the doctor tells me is when the delerium of the dt's subsides then we will know how bad the stroke damage is. OMG, I am freaking out.
So many of us have had AVM and aneurysm bleeds and have had damage/strokes and are perfectly fine. Others are not as lucky, but my point for this update is BLOOD PRESSURE is scarey and very dangerous!
Since I started working and volunteering at the hospital I started preaching! Watch your blood pressure and do not let it go untreated!!!
O yeah, I forgot to tell you all, I got a job at the hospital. I started working for Nutrition Services on the 16th of December. It is great!!! Since Penrose Hospital is the place that gave me my second start of my Re Birth, and it's the place that makes me happy, where is the best place for me to be???? Right there!
Anyway, gang, watch that blood pressure. Keep an eye on it all the time. Anything over 160/100 can be dangerous. just watch it!!! Fair warning from a friend and "Family Member" who is petrified on what is going to happen once the dt's are over, so I can see what's happened to my husband.
I love you all very much.
Love from your angel friend,
Sandy
Update: 22 February 2010
Hi, it's me again. Just want to give you a very short update on the situation.
I have defined myself lately as "a rubberband being pulled out as far as it will go".
I am getting ready to contact a lady named Janet...she is a nurse Liaison who is supposed to assist me in finding a care facility for Donny to go to since he needs 24/7 care
I am having a really hard time dealing with that.
I know it will be best for him, but I know that if he had some of his mental faculties, he would hate the thought of me doing this.
All he wants to do is come home. I wish I could trust him to be here by himself, but I just can't!!!
He could do something dumb! He could leave the stove on. He could go outside and get lost! He could fall down the stairs. He could start drinking beer again. (or God knows what)
I have never had to make these kind of important decisions and I will not make them without the help of the rest of the family, but they have to be done kind of soon, I guess. The target date of him getting out of Penrose could be as soon as March 4th or so.
I feel like I am babbling....and I said I was going to make this a short update...yeah right!
He is still doing well, physically. He is getting stronger by the day. His walking is better. His left side is def the weaker, affected by the strokes.
His memory issues, stink! The cognative issues are not good. He still says things that are not factual. He has a hard time remembering where he is and the year..and things like that.
I had him sign a disability release form yesterday and he put 4 L's in Donald.
Anyway, that's all I can tell you for now...keep you posted later.
Hugs,
Sandy
Update: 15 April 2010
Just wanted to write a quick update. You know how I said that the new place was going to be horrible because of all I had heard and read on the internet. Well, so far, I was wrong.
Donny has been there for a week and I have found that the people there are very caring and very attentive. Since he is in a small unit, he has the same nurses all the time and they are very caring of their few patients. He wasn't feeling well on Thursday and they were all over him. They were watching him very closely and made sure the doc saw him and checked him out. I was there...I saw genuine care...I know it was genuine and not just because I was there. He had been very weak and wobbly that morning, before I got there...they put him in a wheelchair and were watching him closely. They were monitoring his BP. When it was lunchtime, he got up to go to the diningroom and he was very wobbly then. He had 3 LPN's on him immediately. I watched from afar...I didn't want to get in the way and just wanted to see their reactions. They got him to his chair in the DR. They immediately got the BP cuff on him and it was very low. They told me that as soon as the doc got there they would have him checked out. He was due in at noon.
When he finished lunch, which I want you to know, he ate almost all of. (it was chicken parmessan) we went down to his room. He sat in his roommates recliner and just kicked back for a while. We chit chatted a while. When Bernie, his roommate came in, he took his chair back and Donny was in the bathroom at the time. I made the decision that he needs a recliner. I am going to go on a search and find him one. He only has one very hard, uncomfortable chair in his room. I will hit the stores and see what I can find for him. Anyway, I noticed that his bed had been stripped. I went out in the hall and found a gal and mentioned to her that he wanted to lie down. She was back in his room within minutes to make his bed. Unlike the other place where we would have had to wait hours and I would have had to ask repeatedly.
We have one small problem...his prescription glasses are missing. They have this one gal on the unit that wanders...she takes things. Her name is Judy. She doesn't mean to, but she does. Once she realizes it isn't hers, she put it somewhere and the nurses have to go on a treasure hunt to find it. She may be in someone elses room and put it there. It's kinda funny in a way. But I really want his glasses found. We do have another pair at home, but I am not taking them there until we find the others. Judy is a real trip.... I will finish this email after a while, or this evening. Gotta go up to Dad's.
So, anyway...I also made mention that I thought some physical therapy would be good for him to one of his nurses. she mentioned it to the doc and he wrote out a script for that. I think it would make him more stable on his feet. He also lowered his BP meds. That is one of the reasons his BP was so low. That, of course would make him weak and wobbly and the way he was acting on Thursday. Since the doc got there later than we thought, I had gone home. The nurse called me right after he had seen Donny. She told me everything. It is so nice to have them inform me of everything that is going on. Unlike Terrace Gardens where I knew NOTHING!!! Those people didn't care about anything!!!
These people do care!! Like I said, I think I am impressed, so far. We shall see....
hugs and luvs, Sandy P.S. This place could be a blessing in disguise.
Update: 25 July 2010
It is July 24, 2010, 9 days away from my 9th birthday. July 29, 2001 was a day I will never forget, even tho I really don't remember. Wow, it is really hard to believe it's been 9 years since my AVM brain explosion. So many things have happened since then.
It took me 2.5 years to really recover from the first craniotomy. When my neuro doc said I would never work again I knew I had to prove him wrong. I was not going to sit at home for the rest of my life. At the time, I was only 52 years young. When my friend from "Bill's World", Candy Lynch told me to look into volunteering, I did so.
That is now, just the best thing I ever did in my life. I got into the gift shop at Penrose Hospital and became the "Angel Friend". I wore a couple of Guardian Angel pins on my 'Pink Lady' vest and slowly people started giving them to me. I now have more than I can wear on my vest. I decided that since God gave me a second chance at life I had to give back something. So my reputation as the Angel Friend meant I needed to give out a Guardian Angel pin to whomever I felt needed one. In the six years I have been there I can't even count how many I have given out. Whenever someone comes in and offers a story about a patient who is ill and upstairs, if it touches my heart I go up and see that patient and give them a pin. If I deliver flowers to a patient and they are really not well, I give them a pin. I always explain to them that I almost died back in 01 from a brain hemhorage and the Guardian Angels were watching over me, and now I wanted them to watch over them, as well. I have run into so many situations at the hospital that have touched me deeply. I have had many days of sobbing in the back room for these patients. All of my coworkers tell me that I have the biggest heart and the most wonderful gift of love to offer to complete strangers. Well, you know, that's just me!!!
When I got up the confidence that I could really work, I got a part time job working for A.C. NEILSEN. Yep, the big guys.NEILSEN ratings, etc. I was doing data collection for them. I really loved that job. After 2.5 years all of us got laid off because the market for our positions was no longer needed. I was devastated. I really thought that was the job for me to finish off my life with. It was good, relatively easy work and paid well for a part time job here in Colorado Springs. We all got laid off on a conference call. Tacky!!
When I went out looking for something else, I went to Ross Stores Inc. It was 1 mile from my house and I used to shop there all the time and thought, "Why not?" I had never worked in retail per se, but the gift shop had given me some experience in that.
After one year or so of being a cashier, which I loved, the boss came to me and told me that I was too friendly and had to be removed from the cash registers. I had been working with the public for so many years and I had never been told I was TOO FRIENDLY. They decided to put me in the fitting room. Oh my gosh, not a good place for me. I could be friendly back there. But after 1.5 years back there it really wore on me. I hated it! I started looking for something else since I couldn't go back to cashiering. It took a while, but I found a job at the hospital.
I had to completely change my entire resume to get the job in nutrition services. I had not put down my past life, just what I had done the past few years and nothing pertained to food service. When I decided to put down all my food experience from 11 plus years back then I got contacted. I had been in the food and beverage business for about 30 yrs.
So as of the time I am writing this I have been working at Penrose Hospital since the end of December 2009. I fit in with all the people just like in the gift shop.
There is only one problem that has occurred recently. I got busted by the Federal Government. When I took the job, I made it very clear to my boss that I was on SSDI and could only work so many hours and make only so much money. Well, we overstayed our welcome and went over the limits.. I got a letter from SSDI that asked me to send all my pay stubs since the beginning of 2010. Well of course not thinking and being honest, I did so. I was also working one day a week at Ross. I only did it to keep my discount and to help them out. (They kept calling me and asking me to come back, so I did.
Well, I was making too much money and working too many hours. My boss started scheduling me way too much. I took advantage of it because I needed the money.
Back in January my husband became ill and ended up in the hospital After a bunch of mini strokes (TIA's) he ended up with dementia/Alzheimer's. If you read back in my updates you will get more of an idea what we've been thru with that. It's been hell.
So since I needed the money, I never thought twice about having any problems with SSDI until they busted me. When I got the letter saying my benefits were going to be terminated, I panicked. I didn't want to lose my medical, mainly. I could have gotten medical thru the hospital, but it would have been much more expensive.
I won't go into boring detail about what's been going on with all of this, but I did have to quit the Ross job, which is no great loss. I still hated being a fitting room lady! I have been working with my bosses to reconfigure my schedule. I had to take some time off this month because we have 3 pay periods this month and I had already gone over.
I sure didn't mind the time off, trust me!!! I had not taken any time off in a long time. I needed it desperately. I have been spending more time with Donny and he's been loving it. I have still been volunteering at the gift shop. So I have still been a busy girl.
I really wish I could slow down. Maybe one of these days. I don't think I'm ready to retire yet. I would miss all my friends.
I have made a few new friends on the Alzheimer's .org website. It is sure a very complicated disease. It is so weird how it can affect someone as young as my Donny and younger. They say he got it because of his strokes and his drinking every day for many years. Well, I have a friend who's husband is in his late 40's and he didn't drink, he was a vegetarian and led a very clean life and he has it! So do I believe what Don's doctor told me in the hospital?? Nope! Sure don't!!!
As for me, celebrating this 9th birthday is such a blessing. I have been left here with very minor deficits, to help so many people I come in contact with.
I have befriended so many people at the healthcare center where Don lives. I make people smile. I make them laugh. I just love coming in contact with these men and women who never have any visitors. I bring them little things and I can visit all of them 5 days a week. My life is so fulfilled with love for all of them.
One of the gals at the gift shop bought me a little glass teddy bear with a saying on it:
You're the Best
You are someone who will do anything
For anyone. You are always there for others.
You cast your own worries aside and care for everyone
Around you. To me, you are an inspiration. You truly are the best.
I'll tell you, it fits me to a tee. I have gone to hell and back with everything that I've gone thru since Don got sick, but I would rather help others than dwell on my problems. I don't make time for me. I come second and everyone else comes first.
I am fine! I live my life to help others, that is what keeps me going.
So as I get ready to celebrate my 9th birthday, I want all my AVM/aneurysm family to know if you all hadn't been around for the past 8 years since I found you, I don't know if I would be here to thank you all for my very existence and to be able to give.
Celebrate with me on the 29th!!!!
Thank you my friends and thank you God!!!
I love you all.
Update: 18 September 2010
Hi family,
Just wanted to do a very brief update about today! We had the Walk for Alzheimer's. It was held at America The Beatiful Park, here in Colorado Springs.
It was a 3 mile walk around the park on a really good trail. Terry, Nikki, Heather, David, his girlfriend Nicole, our friend Mary Lou, Donny and I all signed up and showed up bright and early this morning.
Between Mary Lou and I, we had raised almost $200.00 in donations for Alzheimer's research.
Our team for Aspen Living Center, where Donny lives raised almost $3500.00. Ok, enough formality.
The main reason for this email is to inform all of you, Donny walked the entire 3 miles!!! They had little golf cart shuttles going around the path and I kept telling him to take one back to the starting point, but he would not give up. He was determined to finish and he did!!! I never thought he would, but he did!! We were all so proud of him! He was the only resident from his wing to walk and the only resident to go from start to finish!
Hugs,
Sandy
Update: 5 December 2010
Well, I went to the ortho doc yesterday, the 2nd and he xrayed my arm again. Took 4 different angles and they all looked good. For an old broad, I healed up good in 7 weeks. Yayyyy! He gave me a doc's release to go back to work. The only stipulation is I can't lift anything heavier than 10lbs.
Now that could be a problem in the cafeteria. The coffee pots are heavier than that and some of the pans in the steam table are heavier, so we will have to see what my boss says when I go see her on Mon or Tues. With the budget cuts, she told me last time I talked with her, which was a couple weeks ago, they may not have very many hours for me anyhow.
I have been doing a job search on the side. But let me tell you, I have not gotten any replies. It is really disappointing to not hear back from anyone! Now I know how David feels. He, too is filling out tons of applications and hearing nothing!!! I am going back to the gift shop, however. Too bad it's volunteer.
luv,
Sandy
Update: 21 March 2011
This is going to be a short and sweet update. On March 13, 2011 my first Grandson, Brayden Anthony came into this world. All went well. It was a relatively good labor and Heather did well.
My next news is something that may surprise you all. I, finally decided what I wanted to be when I grew up...LOL At 62 years old I have decided to go to college. I am starting school on the 28th. I am going to take "Medical Specialties." It consists of medical billing and coding, medical lab procedures, medical records and communications, pharmacy technology aps, drug administration, and several other things. I will be going for 20 months and when I am finished I will have an Associates Degree. I am so excited and anxious!
What I need from all of you is your prayers-I need to be able to learn! With the holes in my brain, I need to be able to comprehend and learn all of this! I desperately want to change my life.
I have been out of work since October, since I broke my shoulder. The hospital cafeteria refuses to give me any hours, so I figured I would learn new things to be able to get a REAL JOB in the hospital that I love so much.
Pray that I can learn all of this and get my degree! Hope all of you are doing well. I love you all....
hugs and luvs, Sandy
Update: 17 May 2011
Well, as I come to a close on my second mod at school, I am pleased to announce that my "holey brain" succeeded once again.
My second course was Computer Apps 101. I was scared to death. I was not sure if I could comprehend Microsoft Word, Excel and Powerpoint. But I DID IT!!!
When I ordered my Dell Laptop, I didn't have it installed on it, so I had no clue. so when I entered that class I had no idea how those programs worked, now I do. I got an A- in the class. My final exam was on AVM's. We had to choose a medical subject and do a Power Point presentation in front of the class. So why wouldn't I pick something I know a lot about?? I got a 97%.
If I do say so myself, I am really proud of myself for doing so well
I was so lost in this class and had to stay after and get some tutoring from my teacher. I just was not comprehending it. There were just too many steps to get anything done, but finally I did get it!
hugs and luvs,
Sandy
Update: 6 August 2011
Been a while since I sent a real update and I bypassed my 10th birthday. Geez, how could I have forgotten that???
July 28th was my brain day. I am so happy to have bypassed a milestone and especially the 10 year!
I am still enrolled in college and doing alright. I made the Dean's list a couple of times and made the Director's list a couple times, as well. (Dean's is 3.5 % and Director's is 4.0 %)
I am pretty darn proud of myself to be passing these classes with that big hole in my brain.
Medical Specialties is a big challenge, especially in an accelerated program. Classes that normally would take 16 weeks, we cram them into 4.
I am having a few problems right now with microbiology, but I will succeed! I don't think I will make the Dean's List, but as long as I pass the class I will be thrilled. It is tough! Since I lost a lot of my comprehension with this AVM...I am having a hard time, but I will pass this class. I will graduate with my class when the time comes!!
I will do a more complete update sometime soon. I am really tired, but wanted to mention my "B'day".
Love you all. God Bless you all.
hugs and luvs,
Sandy "Angel Friend"
Update: 23 October 2011
In the past couple months I have had quite a few things come up that have made me a little apprehensive.
I went to see my doc cause I wasn't feeling quite right, she diagnosed me with a UTI and put me on antibiotics. Three days after my appointment with her, I moved a little the wrong way and got the worst pain in my left lower back that virtually paralysed me. It scared me to death. I was on my way to school. I tried to walk around and walk it off, it wasn't working. I got outside to go to the car and realized that was not happening. I was almost doubled over in agony. It was the worst pain I had ever felt. (worse than labor pains) I called my son David and woke him up and begged him to take me to the ER)
When I got in and they asked all the questions, their first assumption was I was passing a kidney stone. I had heard that was agonizing pain. I learned that in school. They took a urine specimen and took me in for a CT scan. They gave me IV and pain meds. (didn't even touch the pain) The nurse asked me in a while if I wanted more, I said NO I don't do pain meds, they just make me feel icky and don't help the pain.
When the doc got the results of the CT, he came in to talk to us. By that time my daughter Charyn was there with me. He told us that the CT showed no kidney stones, but it did show that I had a mass on my adreanal gland that "if he were me" would get tested pretty quick, it could be cancer. He told me to ice my back, it was something, muscular, skeletal. Didn't solve any of my pain. He did give me a scrip for vicodin, which I was not going to fill!!!
When they gave us the release papers, we came home and read them, that is when the fear began. The CT showed all kinds of things that scared the heck out of us. Besides the mass, it mentioned an abdominal aortic aneurysm, stones in the gallbladder, cysts on the liver, cysts on the ovaries,
So, I called my doctor and she decided I needed another test. (an internal ultrasound) That test was done the following day. It confirmed all the CT findings. So then she decided I needed another CT, this time with barium and with and without contrast. I had that done the following Friday.
Oh, back to the back pain. I had been icing it like crazy. It would go away for a day...I would be so relieved to be pain free for a day or so. Then I would move wrong and the spasm would come back. I started self diagnosing the pain...My father in law and I talked and he asked if I ever heard of sciatica. I checked out the sciatic nerve and BINGO!!! I had every symptom of that. When I went to my doc to discuss the results of the last CT scan I mentioned that, she thought about it for a minute and totally agreed with me!!! She had the same issue once! It kicked her butt once at the office and she had exactly the same symptoms as me.
Ok, now what I have failed to mention, all of the things I have told you all occurred from the 26th of September to the 4th of October.
When she read the results of the CT to us (Charyn and I) she went through each and every item...and decided that each item is not an issue at this time. The two things that really scared me, the aortic aneurysm is really small, so nothing to worry about at this time..the mass on my adreanal gland has the appearance of non malignant nature, the cysts are alright for now. So she decided that I am going to just leave everything as is and she will watch them every six months. I have to go in for labs every six months, so I will get a CT, as well just to watch everything.
She recommended I go to a chiropractor that she went to see when she had her episode with her sciatic nerve issue.
I have gone 4 times, so far. As long as I ice it regularly and don't move drastically the wrong way. If I do, the nerve will spasm and I will be in agony.
I don't know how long I will have to suffer with this, but I am asking all of you to pray for me. I will pray that none of you will ever have a sciatic nerve issue. It is the worst thing that has ever happened to me and I hope and pray it goes away forever, eventually.
God Bless all of you, my friends and family.
hugs and luvs,
Sandy
My daughter, Heather's narrative.
My oldest daughter, Charyn's narrative.
Discussion, comments, or questions: Sandy Guillaume
© Copyright 2002 Sandy
Guillaume
All Rights Reserved - Fair Use
acknowledged
