First of all I want to say that my parents came up to Provo and drove around to many different rehabs and chose Orem because it seemed really nice and they had recently won "Best of Utah Rehab" or something of that sort.
When the Rehab transported me from UVH to Orem Rehab & Nursing I remember being wheeled in and thinking 'the decor is cute, I can stay here for a couple of days' lol who would think that the stinkin decor would be the focal point??? LOL. When I got there I remember having to sign a bunch of paperwork which is not easy when you CAN'T WRITE grrr. But I got it done somehow. My room was pretty cute, it had black furniture which I lovvvve and a T.V. and an armoire (sp?) and there was a cute little welcome package that was balloons tied to a bag of little shampoo, conditioner & lotion. And it was lime green SOOOO cute!! The had a calendar of events on the wall that I could take part in if I had liked to but I was SO tired. Strokes drrrain you! I had to have at least TWO 2-3 hour naps a day and still go to sleep around 8:00. They brought all of my meals to my room which was nice. They would wake me up around 8 every morning with a menu that I could choose from for breakfast; although because half of my tongue was/is numb nothing tasted good so I didn't eat. Well until my mom found out and then I had direct orders to eat a couple of small bites of everything to at least get my strength so I did what I was told. Lunch came around 1 every day and I DID NOT eat it and WOULD NOT the meat looked like it came straight from a can of dog food (not exaggerating)I did eat the roll which was wheat and drank my water so I felt like I was doing what I was told... lol Dinner was about the same N-A-S-T-YYYYYY! So I ate my roll and called it good.
I can't remember exactly when I started my physical therapy but everyday after breakfast a cute girl would come and get me; help me get ready/dressed or whatever I needed. Then she would push me down to the gym in my wheelchair.
Saturday, September 3, 2011
After brain surgery #16 or so.....
I so wanted to be able to write or type however about each brain surgery and the events that went along with it but with my terrible journal keeping I'm relying solely on memory.
So my last TWO b.s were on New Yrs Eve of 2010 and this surgery was a little different. As I said before I still get nervous everytime I have surgery but this time was different. As I was waiting to be wheeled off to surgery I got the WORST feeling ever and just knew that I shouldn't go through with this surgery. After telling Steve and then him making me talk to my mom I decided to go through with it even though I was scared to death. Both my mom & Steve reassured me that it would be alright and that I was scared EVERY time before surgery and how badly I needed the surgery for many reasons but the biggest reason that I was in excruciating pain and surgery was the only thing that would help.
So they came and wheeled me back and then I went through the same steps: scoot onto this bed, we're going to put this mask on you and you need to take some deep breaths, okay ready......and I'm out. When I wake up this time something is wrong, terribly wrong. I cannot move my right side of my body not even an inch; the panic sets in. So many things are going through my mind, but above all I'm terrified. The nurses lift my right arm and I try to hold it up and it drops, lifeless and I have NO control over it. The say "can you feel this" and I'm thinking, what, feel what?! So we go through trying to move my arm, my leg, fingers, toes ANYTHING and sure enough NOTHING moves. I think 'WHAT THE HELL IS GOING ON"?! then I hear the nurse say Dr Gardner is down the hall and she calls for him. I remember NOTHING after that. The next thing I remember is waking up again and Steve telling me that I had to have surgery again. I know he as well as others told me why and what had happened but I can't remember any of it. After surgery I was able to move the right side of my body a little, VERY LITTLE like maybe an inch. I wish I could remember the happenings in the hospital following my surgery but I can't. My mom has reminded me of my wheelchair thing I was in because I couldn't walk and a few other things. Dr Gardner came in and talked to me about the "bruise" that I had on my brain caused from the malposition of the shunt tube which I was ok with. I knew I didn't speak right and I couldn't use the right side of my body but figured it was some sort of anesthesia thing that would soon wear off.
I don't remember much of the hospital to note but the day that I left to go to Orem Rehab & Nursing Dr Gardner talked to me again about the "bruise on my brain" and he called it some other things that I can't remember. I said "Dr Gardner tell me if I'm wrong but it sounds to me like I had a stroke" and he said yes you did but it was caused from a stab to the brain in surgery. Ok so I cannot even explain how that felt to hear. I had a STROKE?! And now I am being transferred to a rehab to learn to live this way!!! Hundreds of miles away from my family and who the hell knows how long I will have to be in this rehab?! I remember thinking right then and there 'my life is O-V-E-R"
Okay I have to stop there for now this is SO hard reliving this traumatic event. But I first want to say how grateful I am to my family and friends that helped me get through this time that I thought I could NEVER live through. Love, Dayna
So my last TWO b.s were on New Yrs Eve of 2010 and this surgery was a little different. As I said before I still get nervous everytime I have surgery but this time was different. As I was waiting to be wheeled off to surgery I got the WORST feeling ever and just knew that I shouldn't go through with this surgery. After telling Steve and then him making me talk to my mom I decided to go through with it even though I was scared to death. Both my mom & Steve reassured me that it would be alright and that I was scared EVERY time before surgery and how badly I needed the surgery for many reasons but the biggest reason that I was in excruciating pain and surgery was the only thing that would help.
So they came and wheeled me back and then I went through the same steps: scoot onto this bed, we're going to put this mask on you and you need to take some deep breaths, okay ready......and I'm out. When I wake up this time something is wrong, terribly wrong. I cannot move my right side of my body not even an inch; the panic sets in. So many things are going through my mind, but above all I'm terrified. The nurses lift my right arm and I try to hold it up and it drops, lifeless and I have NO control over it. The say "can you feel this" and I'm thinking, what, feel what?! So we go through trying to move my arm, my leg, fingers, toes ANYTHING and sure enough NOTHING moves. I think 'WHAT THE HELL IS GOING ON"?! then I hear the nurse say Dr Gardner is down the hall and she calls for him. I remember NOTHING after that. The next thing I remember is waking up again and Steve telling me that I had to have surgery again. I know he as well as others told me why and what had happened but I can't remember any of it. After surgery I was able to move the right side of my body a little, VERY LITTLE like maybe an inch. I wish I could remember the happenings in the hospital following my surgery but I can't. My mom has reminded me of my wheelchair thing I was in because I couldn't walk and a few other things. Dr Gardner came in and talked to me about the "bruise" that I had on my brain caused from the malposition of the shunt tube which I was ok with. I knew I didn't speak right and I couldn't use the right side of my body but figured it was some sort of anesthesia thing that would soon wear off.
I don't remember much of the hospital to note but the day that I left to go to Orem Rehab & Nursing Dr Gardner talked to me again about the "bruise on my brain" and he called it some other things that I can't remember. I said "Dr Gardner tell me if I'm wrong but it sounds to me like I had a stroke" and he said yes you did but it was caused from a stab to the brain in surgery. Ok so I cannot even explain how that felt to hear. I had a STROKE?! And now I am being transferred to a rehab to learn to live this way!!! Hundreds of miles away from my family and who the hell knows how long I will have to be in this rehab?! I remember thinking right then and there 'my life is O-V-E-R"
Okay I have to stop there for now this is SO hard reliving this traumatic event. But I first want to say how grateful I am to my family and friends that helped me get through this time that I thought I could NEVER live through. Love, Dayna
Thursday, September 30, 2010
Brain Surgeries #3-14
Ok wow I truely wanted to post about all of my experiences with each surgery but I can not for the life of me remember every one. So I'm going to just start off with #14.
The date was June 28, 2010 and I went in for my 14th brain surgery; these surgeries have become so routine that my family and myself probably pay less attention to them than some people do a root canal. Steve had work and we couldn't afford for him to take it off, with having surgery and the costs that go with it and losing income on top of that. So one of my very good friends Chey went up with me on Sunday night we got our hotel room then decided to go to Olive Garden for dinner. I remember that I got some kind of seafood pasta meal but that's about it. It was a nice time (girl time) ya know, I don't get many of those anymore so I appreciated every minute of it. When we finished we went back to our room and Chey put some fun acrylic on my toes. It's kinda strange but for whatever reason when I have surgery I want my toes to be cute so I can focus on ONE cute thing considering my head was going to be half shaved and all the tubes in and out of my body a girl has to feel somewhat pretty (hehe)
I had Chey go up with me so she could drive my car back home so when Steve needed to come pick me up he had the car.
Yes I was nervous, it never gets un-nerve racking. I asked Chey if she could stay long enough until I got out of surgery and she said yes (whew) To be completely honest the reason I want someone there when I come out is because I don't want to be completely alone if I were to die, how sad and embarrassing to think noone would be there. Really who wants to die alone? You might think that is selfish and kinda twisted of me but it is what it is. When I woke up Chey showed me my new cute Victoria Secret joggers she got me, again something to feel pretty (blushing) we talked for a second, about what I'm not sure; probably about what she was going to do with the car and stuff. And she was off. I was taken up to my teeny tiny room where I would spend the next 5 days without any company but Facebook. It did keep me entertained and caught up on things while I was out. People were super sweet I had a lot of "get well's" and "how are you doing's" So between Facebook, the telephone and my nurses I wasn't alone. I do remember that I was in A LOT of pain and that sucked, well it always sucks to be in pain. Steve came up on Thursday because I knew I was being released on Friday, when he got there he visited with me and probably brought me some kind of gift, he always does; then I sent him on his way to the hotel. He stayed at a hotel this time but usually stays in the room with me. I insisted he stay at the hotel because he had been working hard and deserved a good rest. We left the hospital the next day and I made Steve take me to the mall to get a couple of Twilight shirts I had seen before I went in for Darcie and I to wear to Eclipse. I wanted to bring her back a surprise because she waited for me to see it when she could've went without me (so sweet) Kanarraville celebrated the 4th of July on the 3rd because it was on a Saturday so I had BIG plans to go to the 4th of July events and surprise my kids. So I got home late on July 2nd and got to sleep, I woke in a lot of pain so I missed the parade which I was disappointed because my kids were in the parade but I was able to make it a little later after my meds had kicked in. It was a fun day, although I wasn't the most comfortable and then we had the dance that night. In Kanarra the town rents a D.J. and those big blow-up things for the kids to jump on and slide down etc and it's free! So we went to the traditional night in the park to have some CRAZY fun! There is a large cement dance floor and a stage as well. The DJ sets up on the stage and the dance floor is for obviously to dance. Every year I get up and dance, I HAVE to it's just a family thing.....we LOVE to dance!!! So this year was NO exception, because I just had surgery I obviously couldn't move very well so I told my sister that she had to do the moves that I wanted to do, she was a good sport. I just stepped side to side and Darcie got giggy wid it LOL! My family was a little worried about me dancing but I was careful. Not at all like another year after surgery and I tried to do the limbo....yes not smart at all. The sad part is on my way down I took a little boy too, poor kid didn't deserve that but was okay, a little shook up but ok.
After about 10 pm we decided to head home. We took the kids with us because I missed them so much while my mom had them and Steve didn't have to work until Mon. I will stop here and write more later because I'm having a hard time seperating my surgeries and I'm not quite sure what happened next. OH this was my 13th surgery!! LOL
The date was June 28, 2010 and I went in for my 14th brain surgery; these surgeries have become so routine that my family and myself probably pay less attention to them than some people do a root canal. Steve had work and we couldn't afford for him to take it off, with having surgery and the costs that go with it and losing income on top of that. So one of my very good friends Chey went up with me on Sunday night we got our hotel room then decided to go to Olive Garden for dinner. I remember that I got some kind of seafood pasta meal but that's about it. It was a nice time (girl time) ya know, I don't get many of those anymore so I appreciated every minute of it. When we finished we went back to our room and Chey put some fun acrylic on my toes. It's kinda strange but for whatever reason when I have surgery I want my toes to be cute so I can focus on ONE cute thing considering my head was going to be half shaved and all the tubes in and out of my body a girl has to feel somewhat pretty (hehe)
I had Chey go up with me so she could drive my car back home so when Steve needed to come pick me up he had the car.
Yes I was nervous, it never gets un-nerve racking. I asked Chey if she could stay long enough until I got out of surgery and she said yes (whew) To be completely honest the reason I want someone there when I come out is because I don't want to be completely alone if I were to die, how sad and embarrassing to think noone would be there. Really who wants to die alone? You might think that is selfish and kinda twisted of me but it is what it is. When I woke up Chey showed me my new cute Victoria Secret joggers she got me, again something to feel pretty (blushing) we talked for a second, about what I'm not sure; probably about what she was going to do with the car and stuff. And she was off. I was taken up to my teeny tiny room where I would spend the next 5 days without any company but Facebook. It did keep me entertained and caught up on things while I was out. People were super sweet I had a lot of "get well's" and "how are you doing's" So between Facebook, the telephone and my nurses I wasn't alone. I do remember that I was in A LOT of pain and that sucked, well it always sucks to be in pain. Steve came up on Thursday because I knew I was being released on Friday, when he got there he visited with me and probably brought me some kind of gift, he always does; then I sent him on his way to the hotel. He stayed at a hotel this time but usually stays in the room with me. I insisted he stay at the hotel because he had been working hard and deserved a good rest. We left the hospital the next day and I made Steve take me to the mall to get a couple of Twilight shirts I had seen before I went in for Darcie and I to wear to Eclipse. I wanted to bring her back a surprise because she waited for me to see it when she could've went without me (so sweet) Kanarraville celebrated the 4th of July on the 3rd because it was on a Saturday so I had BIG plans to go to the 4th of July events and surprise my kids. So I got home late on July 2nd and got to sleep, I woke in a lot of pain so I missed the parade which I was disappointed because my kids were in the parade but I was able to make it a little later after my meds had kicked in. It was a fun day, although I wasn't the most comfortable and then we had the dance that night. In Kanarra the town rents a D.J. and those big blow-up things for the kids to jump on and slide down etc and it's free! So we went to the traditional night in the park to have some CRAZY fun! There is a large cement dance floor and a stage as well. The DJ sets up on the stage and the dance floor is for obviously to dance. Every year I get up and dance, I HAVE to it's just a family thing.....we LOVE to dance!!! So this year was NO exception, because I just had surgery I obviously couldn't move very well so I told my sister that she had to do the moves that I wanted to do, she was a good sport. I just stepped side to side and Darcie got giggy wid it LOL! My family was a little worried about me dancing but I was careful. Not at all like another year after surgery and I tried to do the limbo....yes not smart at all. The sad part is on my way down I took a little boy too, poor kid didn't deserve that but was okay, a little shook up but ok.
After about 10 pm we decided to head home. We took the kids with us because I missed them so much while my mom had them and Steve didn't have to work until Mon. I will stop here and write more later because I'm having a hard time seperating my surgeries and I'm not quite sure what happened next. OH this was my 13th surgery!! LOL
Thursday, March 25, 2010
1st Surgery
Okay so after being home for one day I think...I received a phone call from my doctors office telling me that they could schedule my surgery at Utah Valley Hospital because it's an IHC hospital (I have to add here that I am so grateful it was there because I LOOOOVE that hospital) SO we headed up to Provo for my surgery and I can't remember for sure but I think it was May 23, 2002 my mom could correct me if I'm wrong she remembers the hell a lot more than I do. I went into the "pre-op" room and they got me all ready; in my gown, cap and whatever else that I had to have. I can't remember a whole lot but I do remember being terrified that I was going in and I wasn't going to come out alive. I told my mom, dad & Steve I loved them then I was headed to the "holding room" this is a big dark room filled with people on hospital beds getting ready to be wheeled in for whatever surgery they were having done. I was so so scared and as hard as I tried to be tough I couldn't hold back, I lost it by that I mean I started crying not loud but the tears were flooding. The lady next to me couldn't help but notice that I was crying and asked if I was ok and I had let her know I wasn't sure that I was scared and told her a little about me like my age my new little family and basic things like that. After I gave her my spill she told me she knew how scary it was this was her 2nd time around and I was thinking oh good you do live through this! Then she went on to tell me the hell she went through after the 1st surgery and promised she wasn't ever going to do it again but that her other knee...yes you read it right her KNEE!!!! was so painful and practically worthless...at this point I am staring at her but really not looking at her but straight through her thinking are you serious?! I thought we were all having similar surgeries "we in our hospital beds waiting to be rolled into the O.R." The sweet lady just kept talking and I heard most of what she said but really tuned in when she said it is hard honey and recovery is always a little tough but the worst is almost behind you...now what surgery did you say you were having????? That was the moment that I just blurted it out almost irritated and possibly rudely...brain surgery. The sweet lady gasped and then reassured me that I had every reason to be scared and crying...thanks, thanks a lot.... WTH??!!! Well the surgery went quickly for me at least now for my mom I know it was the longest 4 hours if I'm remembering right of her life. She was sewing an afghan and to look at this afghan now you can see EXACTLY how worried and tense she was I think she pulled the yarn so tight that it looked more like that cross stitching thread than yarn! She said all of a sudden she got this overwhelming feeling...she's gone, she's gone. And I wasn't there but I'm sure she TOTALLY lost it!!!! She said it was a feeling like she hadn't felt before and it was like she "KNEW" I was gone, dead. I'm not sure how long after that feeling that Dr Gardner came and updated them that the surgery went pretty well but that I had been in pretty bad condition, my brain stem had been moved to the side of my head...which is supposed to not happen or you would be dead or at the least brain dead but yes it had moved and for the most part I'm not COMPLETELY brain dead however there are days I think I am LOL. He told them they could see me in a little while I think it was like 30 minutes.
The next thing I remember is my mom yelling at me telling me I HAD TO WAKE UP!!!! It had been 1 or 2 days since my surgery and I had been out and they were trying to wake me and I wasn't waking up. It was kinda like a dream you know when you can hear someone screaming at you from far away but you know they are screaming, that's the only way I can explain it. My mom kept saying Dayna you HAVE to wake up! You have to breathe better you are going to have respitory failure or something like that. Well it took EVERYTHING I had but I opened my eyes to what felt like the brightes sunlight ever and I SOOO didn't want to keep my eyes open so obviously I shut them again and my mom said in her "I'm the freakin boss damn it" voice Dayna open your eyes and start breathing! Take deep breaths now, keep your eyes open, you need to listen and do what I'm saying now do it! She wasn't yelling at me but I knew she meant business and I could tell by the look on her face that she was terrified. So I did what she told me I kept my eyes open as long as I could and took the deepest breaths I could possibly take and it felt like my lungs had completely collapsed and I couldn't get enough air and the air I was getting hurt, it burned my lungs it didn't feel right almost like when your too close to a fire and you inhale smoke. I remember struggling to stay awake but almost felt like something was just sucking the life out of me and I wanted to just close my eyes and sleep it was just so much easier than all of this but I knew from my mom's "I'm the freakin boss damn it" voice that I had to try harder. I was in and out but the longer it went I was awake longer than asleep. Then a terribly mean man came in with some torture device that I had to suck just the right way to get this level thingy to rise. What it was was the respitory therapist with a lung excerciser (with lack of a better or the right name) but it sucked I was sure it was broken because I was FAR from where this man said it needed to be without much effort....I thought what the hell does he know! HAH Then I had some physical therapists come in and tell me that I had to get up and walk and I was like ummm let me think about it NOPE! I hurt laying here why the hell would I want to get up and walk?! Well I didn't have much choice or any choice at all if I remember right. They helped me up slowly and let me tell you the higher my head got the more of a fog I was in, like the world was spinning and the pain was overbearing. It felt like the higher I sat my head was being crushed in a vice it was horrible but I was told that after a little while I would adjust and that I HAD to do it. Well talk about feeling like an oversized 1 year old I had one therapist holding each arm, pretty much holding me up and then they said ok step....what?? now they want me to move my legs as my head is being crushed in a freaking vice and the world is spinning out of control?! Have any of these guys ever been drunk? Well the spins you get from that seemed like nothing compared to this!!! So I began walking...if you can call it that it was like 1 step every 10 minutes and they wanted me to walk all the way up this hall? Well hate to break it to you guys but your not going home tonight I'm NEVER going to make it there in 1 day let alone in minutes!!!! Well it's beyond me how I got there other than one step at a time with a lot of encouragment from both therapists and the nurses commenting and a few claps even **tearing up** wow these people love me enough to encourage me to keep going when what I really wanted to do is die. But I knew that wasn't an option I had 2 kids at home that needed me and even more than that I would NEVER let my mother see me give up and make her watch her daughter die. Her just watching me go through what I was going through was hard enough on her I could see it in her eyes even though she tried not to worry me or let me know she was worried. I was going to do this, not for me, not for my husband, not even my kids because I knew they would be alright they were young enough but I HAD to do it for my mom!!! And damn it I will!!!! And I did do it. Not without a lot of help and love and care from such selfless nurses and other staff but I did do it.
There was one night that I remember being in the worst pain ever and thinking please God please take the pain away or take me out of this body and my nurse came in which was a male nurse and held my hand and rubbed my head until the pain lessened and I was almost asleep and I will NEVER forget him for ever. Thank you Brad!! I don't know his last name but I do know last I knew he was still on the ICU floor at Utah Valley Hospital. He was definately my angel sent to me that night and HE got me through it. Okay I have to stop here because I am crying too much and can't see the screen to type but I hope you enjoy reading this and maybe even get to see the perspective of some of these people out there that have challenges in their life. I did try to add some humor to it too! This is really hard for me to do because reliving it obviously makes me cry as I have noted but I think it helps in some weird way to. BTW I love you MOM!!!!
The next thing I remember is my mom yelling at me telling me I HAD TO WAKE UP!!!! It had been 1 or 2 days since my surgery and I had been out and they were trying to wake me and I wasn't waking up. It was kinda like a dream you know when you can hear someone screaming at you from far away but you know they are screaming, that's the only way I can explain it. My mom kept saying Dayna you HAVE to wake up! You have to breathe better you are going to have respitory failure or something like that. Well it took EVERYTHING I had but I opened my eyes to what felt like the brightes sunlight ever and I SOOO didn't want to keep my eyes open so obviously I shut them again and my mom said in her "I'm the freakin boss damn it" voice Dayna open your eyes and start breathing! Take deep breaths now, keep your eyes open, you need to listen and do what I'm saying now do it! She wasn't yelling at me but I knew she meant business and I could tell by the look on her face that she was terrified. So I did what she told me I kept my eyes open as long as I could and took the deepest breaths I could possibly take and it felt like my lungs had completely collapsed and I couldn't get enough air and the air I was getting hurt, it burned my lungs it didn't feel right almost like when your too close to a fire and you inhale smoke. I remember struggling to stay awake but almost felt like something was just sucking the life out of me and I wanted to just close my eyes and sleep it was just so much easier than all of this but I knew from my mom's "I'm the freakin boss damn it" voice that I had to try harder. I was in and out but the longer it went I was awake longer than asleep. Then a terribly mean man came in with some torture device that I had to suck just the right way to get this level thingy to rise. What it was was the respitory therapist with a lung excerciser (with lack of a better or the right name) but it sucked I was sure it was broken because I was FAR from where this man said it needed to be without much effort....I thought what the hell does he know! HAH Then I had some physical therapists come in and tell me that I had to get up and walk and I was like ummm let me think about it NOPE! I hurt laying here why the hell would I want to get up and walk?! Well I didn't have much choice or any choice at all if I remember right. They helped me up slowly and let me tell you the higher my head got the more of a fog I was in, like the world was spinning and the pain was overbearing. It felt like the higher I sat my head was being crushed in a vice it was horrible but I was told that after a little while I would adjust and that I HAD to do it. Well talk about feeling like an oversized 1 year old I had one therapist holding each arm, pretty much holding me up and then they said ok step....what?? now they want me to move my legs as my head is being crushed in a freaking vice and the world is spinning out of control?! Have any of these guys ever been drunk? Well the spins you get from that seemed like nothing compared to this!!! So I began walking...if you can call it that it was like 1 step every 10 minutes and they wanted me to walk all the way up this hall? Well hate to break it to you guys but your not going home tonight I'm NEVER going to make it there in 1 day let alone in minutes!!!! Well it's beyond me how I got there other than one step at a time with a lot of encouragment from both therapists and the nurses commenting and a few claps even **tearing up** wow these people love me enough to encourage me to keep going when what I really wanted to do is die. But I knew that wasn't an option I had 2 kids at home that needed me and even more than that I would NEVER let my mother see me give up and make her watch her daughter die. Her just watching me go through what I was going through was hard enough on her I could see it in her eyes even though she tried not to worry me or let me know she was worried. I was going to do this, not for me, not for my husband, not even my kids because I knew they would be alright they were young enough but I HAD to do it for my mom!!! And damn it I will!!!! And I did do it. Not without a lot of help and love and care from such selfless nurses and other staff but I did do it.
There was one night that I remember being in the worst pain ever and thinking please God please take the pain away or take me out of this body and my nurse came in which was a male nurse and held my hand and rubbed my head until the pain lessened and I was almost asleep and I will NEVER forget him for ever. Thank you Brad!! I don't know his last name but I do know last I knew he was still on the ICU floor at Utah Valley Hospital. He was definately my angel sent to me that night and HE got me through it. Okay I have to stop here because I am crying too much and can't see the screen to type but I hope you enjoy reading this and maybe even get to see the perspective of some of these people out there that have challenges in their life. I did try to add some humor to it too! This is really hard for me to do because reliving it obviously makes me cry as I have noted but I think it helps in some weird way to. BTW I love you MOM!!!!
Friday, January 29, 2010
2nd addition
Okay so I'm going to try to remember everything that I can...So when I got home I patiently waited for Steve to get home from work, well I guess you could call it patient I just sat in the recliner in a complete daze rocking back and forth back and forth. So I heard the truck pull up and Steve came into the house and at the time the first room you walked into in our house was the livingroom and that's where I was sitting..rocking, Steve noticed immediately something was wrong and he knew that I had my appointment that day with the doctor to get my results. He asked me "what's wrong" and I said "I have a brain tumor" just blurted it out just matter of factly and he just blindly stared at me for a few seconds not saying a word then turned around and went back outside to aimlessly wander around the yard. I thought WTF! Really?! Is that all he can do for me? No hug, no honey we can get through this, no are you okay nope just left me there to be scared to death by myself. Then the phone rang and it was my mom she was curious as to what I had found out from the doctor as well and I just like I told Steve told my mother the very same thing and just as emotionless and matter of factly (if that is a word) and she starting screaming and sobbing, OMG! OMG! OMG! That is all she kept saying and then the phone hit the floor. It took a few seconds and she picked the phone up and said I have to go I will be there in a second (histerically) While I waited for my mom to show up still sitting in the chair rocking back and forth, Steve still outside and I cannot remember where my children where for the life of me, I don't know if they were home or what. But it took my mom more than a second to get to my house which was literally seconds from her house, I was having so many different emotions run through me, anger, sadness, scared, abandoned in my time of need, and thankfully in shock. Well my mom showed up maybe 30 minutes later and looked horrible I could tell that she had had a complete breakdown. She told me she was sorry it took her so long but the first thing that came to her mind is "I need my mom" so she went to my grandma's and my grandma worked her magic and got her somewhat together so that she could face me. I'm not sure when Steve came in exactly but I think it was right after my mom got there and somewhere in this devastated time I think it was my mom that suggested we call my Bishop, Kenneth Lamb to come over to the house to help us in anyway he could. I don't know who made the call, I'm assuming Steve did and the Bishop was there in a matter of seconds, he didn't know exactly what was going on but knew there was "something wrong". I know now and I knew then that that was the best thing we could've done because he got us all anchored and then asked me if I wanted a blessing. I don't know exactly when my sister Darcie got there if it was right before the Bishop or immediately after but I do remember we were all there when I got my blessing and the sad thing is I cannot remember if Steve helped with that blessing or not but what I do remember is that he said I would be fine and that I would raise my children, well for those of you that are LDS I know that we "believe" that we can raise our children in the after-life but I KNEW that he meant in this one and was comforted so much and because of my comfort I know it helped my mom to be a little more comforted. I can't remember what happened next that night but I do know that after having a bawlfest of all time and all the emotions I was extremely drained. The next day the doctors office called and told me I had an appointment with my Neurosurgeon in Provo in the next couple of days and this was Dr. Paul Gardner. I remember that my mom and my dad took me to this appointment to see the doctor and to hear exactly what I had. I was VERY upset that Steve didn't go with me, he had told me that he couldn't miss work and I can remember thinking I might find out that I'm dying but you can't miss work?! While on our way to Provo I remember a song that came on the radio that I hadn't heard before and it was Tim McGraw and I have always been a fan of his. I listened to this song, to EVERY word and the name of that song was "Live like you are dying" I couldn't believe it!! If you have never heard that song I encourage you to find it and listen to it, it's is a BEAUTIFUL song! Well we arrived in Provo and found the doctors office, we all went in to the room to hear what the doctor had to say and that was that he wanted me to have surgery ASAP which happened to be the next day at Timpanogos (sp?) Regional Medical Center we then left the doctors office and went and got my lab work done and then went and got our room at the LaQuinta. When we got to the hotel my mom decided that we needed to go to a store and get some things that we would need because when we had left to come up we hadn't planned on staying. So we went to K-Mart and got a few things, my mom got me some comfty jammies for after my surgery I will never forget the pants were bright pink with a HUGE smiley face on the bum, my mom thought they were perfect **tears** So we headed back to the hotel room and the receptionist let me know I had a message that she conveyed "your surgery has been canceled because your insurance will not cover it" it felt like a bomb had hit me...what??!!! Was this true? I mean I wasn't having a nose job or something cosmetic I was having BRAIN surgery..life or death, I COULD NOT believe this! So we went down to our room and I made a call to my doctor to find out what the deal was and he told me that I would have to wait 2 days and then I could have it at Utah Valley because it was and IHC facility and that is what my insurance would cover. So I went down to the desk to see if we could get a refund on our room since we hadn't even spent 15 minutes in it and she let me know that she could not...I was floored, irate, this is the same woman that had just not only told me of my canceled brain surgery but heard it before I even had. So like I said I was pretty much bolistic, I walked into the room of the hotel and went straight into the bathroom and threw EVERY towel on the floor, took the tissue box out and was planning on taking that with me home, walked into the other room and proceeded to tear off all the covers off of both beds and like that wasn't bad enough I threw them ALL over the room. My mom and dad just stared at me I think they were too scared to say anything and I had already ranted and raved about the bitch down the hall that has no heart and so on and so. So after I could demolish the room without doing too much damage like breaking a window my mom took my arm and escorted me out. On our way out to the car the receptionist said "have a good day" and I said pretty loud, not yelling but loud enough she could hear me "F** you" yep never said that in front of my parents before and wasn't to keen of the word at all but at that point there wasn't anything bad enough, rude enough, that could make me feel better that I could say. And no that didn't make me feel better either I just then felt worse for saying such a thing in front of my parents to a total stranger that didn't deserve that so then I had a new thing to worry about for the ride home. On our way we had made a few calls to tell the people that we had informed of my scheduled surgery that it was canceled. I'm not sure of how many people were called but my sister was one of them, she had Bayti and Kye. By the time we got to Kanarraville from Provo Darcie had let us know that throughout the town of Kanarra and others donating money they had $10,000 that I could use so I could get my surgery done. (I cried then as I am now) I couldn't believe it the love, the gratitude, the humility, could I be worth this to these people??? Okay I have to stop here for now because I am sobbing and can't see the screen but I will definately write more soon.
Tuesday, January 19, 2010
Trying to start as close to day one
Okay trying to start from day one; without journal entries and relying solely on my not so great memory.
I wish I could remember the exact date..if I could get ahold of my mom right now I could. But from memory only like I said here we go.
Driving home from St. George with my sister Darcie at the bottom of the black ridge I told her "something" I am not sure what it was that I said to her but whatever it was I repeated again by the time we reached the top of the Black Ridge..this something was obviously not something that people tend to repeat like many do, if you know what I mean. She said "THAT'S IT!" you are going to the doctor!! I had recently given birth to my youngest son Kye and had passed my headaches, memory loss, high blood pressure, hair loss, depth perception etc. on hormones but Darcie had had it and she was sure that I needed to see the doctor. While working as a hairdresser, having a newborn, a 2 yr old daughter and just being a wife and mother I was putting "my problems" on the back burner. While working one day at the salon my headache was worse than the norm that I had been dealing with, it had me down and when I say that I mean laying down feeling faint and VERY scared so I called an aunt of mine and asked her if I could get an appointment to see a doctor would she come get me and take me because I was in no shape to drive, she agreed. I called a few different doctors offices and one could get me in right then so Yo came and got me and off we were to the doc. The Dr examined me, I had extremely high blood pressure and after a few minutes his diagnoses was "sinus infection" after hearing that I let the doctor know that I knew I wasn't a doctor but just with my EMT skills I KNEW we were not dealing with a sinus infection. But the Dr. informed me that there are many sinus infections that are very painful and cause these symptoms and wanted me to take an anti-biotic. When we left the doctor I had Yo take me back to work with my script in hand which I was not going to fill. So after having a few more days with exteme pain and the other symptoms I saw another doctor, actually a CFNP that I had used as my "preferred provider" he was a little boggled and we decided to have me take blood pressure medication because high blood pressure can cause terrible headaches. So I took this medication for maybe a week when one day I fainted at home due to my blood pressure being too low. I had given up I had seen 2 different doctors a few different times and noone seemed to know what was going on. So I decided to just wait it out and suffer while doing it. My whole family that lives in a small town all knew about what I was suffering with and being a close family they all were trying to help in anyway they could, looking on the internet for causes of the symptoms that I had and other ways. My grandma had asked to me give it one more try, go and see "her" doctor, I didn't want to but because I love my grandma so dearly and I could see it pained and worried her for me to be in pain and suffering the way I was I agreed. I went and saw her doctor. His name was Doctor Bruce Hendrix. He examined me from head to toe then ordered some tests to have me do, go to the eye doctor, get a CT scan and some blood work and I was to reschedule to see him in a couple of days and get my test results. The day I went in I had taken my grandma with me, she was to have a test done then we would both go in and see Dr. Hendrix and see what results the tests would have for me. Well grandma's test was a little longer than planned so I patiently waited for her in the doctors office also waiting for my name to be called to see the doctor. I remember sitting there secretly praying that my grandma would get done in time to hear my results, I had a strong feeling that my results were going to be bad...well I heard my name called and grandma wasn't there to be with me so I decided to put my big girl panties on and just go and hear what had to be said on my own AND deal with it. It wasn't long before Dr. Hendrix entered the room and sat on his stool (you know the ones they always sit on) and he began talking I don't remember what he said before I heard the words "brain tumor" and that hit me pretty hard the doctor continued talking about what needed to be done next and that he was trying to get ahold of a Neurosurgeon which at the time I had NO idea what that meant. I sat quietly and then forced out the words.....I'm scared, Dr. Hendrix then answered with "I'm sorry I wish I could tell you not to be" with what looked to me like a tear in his eye. After what felt like the longest 5 minutes of my life there was a knock on the door, I knew it would be my grandma; well I hoped anyway. It was, she came in and the doctor began to tell her what he had told me and I don't know why, if it was because my grandma was there and I didn't have to be the "strong adult" or whatever but at that moment I lost it and tears were streaming. I didn't know it right then but this would be the start to my 6 year hell in pain and 13 brain surgeries to come..so right now I need to go fix my son lunch and continue "existing" in my everyday life but I will write more later when I have the time. This will not be easy for me for numerous reasons but I feel the need to share my experiences with those of you that are interested.
I wish I could remember the exact date..if I could get ahold of my mom right now I could. But from memory only like I said here we go.
Driving home from St. George with my sister Darcie at the bottom of the black ridge I told her "something" I am not sure what it was that I said to her but whatever it was I repeated again by the time we reached the top of the Black Ridge..this something was obviously not something that people tend to repeat like many do, if you know what I mean. She said "THAT'S IT!" you are going to the doctor!! I had recently given birth to my youngest son Kye and had passed my headaches, memory loss, high blood pressure, hair loss, depth perception etc. on hormones but Darcie had had it and she was sure that I needed to see the doctor. While working as a hairdresser, having a newborn, a 2 yr old daughter and just being a wife and mother I was putting "my problems" on the back burner. While working one day at the salon my headache was worse than the norm that I had been dealing with, it had me down and when I say that I mean laying down feeling faint and VERY scared so I called an aunt of mine and asked her if I could get an appointment to see a doctor would she come get me and take me because I was in no shape to drive, she agreed. I called a few different doctors offices and one could get me in right then so Yo came and got me and off we were to the doc. The Dr examined me, I had extremely high blood pressure and after a few minutes his diagnoses was "sinus infection" after hearing that I let the doctor know that I knew I wasn't a doctor but just with my EMT skills I KNEW we were not dealing with a sinus infection. But the Dr. informed me that there are many sinus infections that are very painful and cause these symptoms and wanted me to take an anti-biotic. When we left the doctor I had Yo take me back to work with my script in hand which I was not going to fill. So after having a few more days with exteme pain and the other symptoms I saw another doctor, actually a CFNP that I had used as my "preferred provider" he was a little boggled and we decided to have me take blood pressure medication because high blood pressure can cause terrible headaches. So I took this medication for maybe a week when one day I fainted at home due to my blood pressure being too low. I had given up I had seen 2 different doctors a few different times and noone seemed to know what was going on. So I decided to just wait it out and suffer while doing it. My whole family that lives in a small town all knew about what I was suffering with and being a close family they all were trying to help in anyway they could, looking on the internet for causes of the symptoms that I had and other ways. My grandma had asked to me give it one more try, go and see "her" doctor, I didn't want to but because I love my grandma so dearly and I could see it pained and worried her for me to be in pain and suffering the way I was I agreed. I went and saw her doctor. His name was Doctor Bruce Hendrix. He examined me from head to toe then ordered some tests to have me do, go to the eye doctor, get a CT scan and some blood work and I was to reschedule to see him in a couple of days and get my test results. The day I went in I had taken my grandma with me, she was to have a test done then we would both go in and see Dr. Hendrix and see what results the tests would have for me. Well grandma's test was a little longer than planned so I patiently waited for her in the doctors office also waiting for my name to be called to see the doctor. I remember sitting there secretly praying that my grandma would get done in time to hear my results, I had a strong feeling that my results were going to be bad...well I heard my name called and grandma wasn't there to be with me so I decided to put my big girl panties on and just go and hear what had to be said on my own AND deal with it. It wasn't long before Dr. Hendrix entered the room and sat on his stool (you know the ones they always sit on) and he began talking I don't remember what he said before I heard the words "brain tumor" and that hit me pretty hard the doctor continued talking about what needed to be done next and that he was trying to get ahold of a Neurosurgeon which at the time I had NO idea what that meant. I sat quietly and then forced out the words.....I'm scared, Dr. Hendrix then answered with "I'm sorry I wish I could tell you not to be" with what looked to me like a tear in his eye. After what felt like the longest 5 minutes of my life there was a knock on the door, I knew it would be my grandma; well I hoped anyway. It was, she came in and the doctor began to tell her what he had told me and I don't know why, if it was because my grandma was there and I didn't have to be the "strong adult" or whatever but at that moment I lost it and tears were streaming. I didn't know it right then but this would be the start to my 6 year hell in pain and 13 brain surgeries to come..so right now I need to go fix my son lunch and continue "existing" in my everyday life but I will write more later when I have the time. This will not be easy for me for numerous reasons but I feel the need to share my experiences with those of you that are interested.
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