email sent to my aunt and uncle on Aug 22. 2011

Hello, 

    Aunt Carol  I am hoping that you still use this email.  I wanted to thank you for the couple of cards you have sent, they are still on my fireplace mantel. lol.  and I think of you fondly when I see them.  

   and Uncle Craig, because I don't want to write this all over again. and want to keep you up to date.  

 Please let me know if I have the correct email addresses.  

  Things are going alright here,  I get very frustrated, because nothing ever seams to go right for me.  My newest frustration is how crappy I feel.  They say that Hypertension is a silent but deadly disease, but I felt good with high blood pressure.  Now that they have it under control, I just want to sleep.  She said that is normal for people that have always had hypertension, and eventually I will feel better.   

   They have also found out that my thyroid is shot, and they started me on 25 mcg of synthroid, but they waited 6 months to check that level in my blood, and they just upped my dose to 50 mcg.  I hope this works.  I am doing everything in my power to lower my bp normally. so that maybe someday I can get off of some of these meds.  (I am dizzy all the time)  Paul and I have both quit smoking,  We go for a mile walk every morning as the sun is coming up, we want to up it to 2 miles, but are waiting for cooler weather.  I excersize 6 days a week, alternating aerobics and weight training.  I only eat red meat as a treat every now and then, but eat lots of chicken and fish, and vedgies and fruit.  totally do not use butter or margarine, switched to olive oil.  I am telling you all of this because the part that is frustrating me the most is that the only thing left for me to do to lower my blood pressure on my own is to lose weight, unfortunately, I put on 50 extra pounds when I quit smoking.  and the last 3 times I have been to the Dr, I keep adding 5 or more pounds to that.  My Dr says that it is either one of the bp medicines, or my thyroid, or because I am peri menopausal, and to just keep working at it. Arghhhhh.... do they have any clue.  I am now at 239 lbs, and doing squats and lunges, I cant work any harder.  and I am doing all of this when all I really want to do is sleep.  (hoping that the extra synthroid helps with this)

  My surgery has been canceled again.  due to lack of funds or insurance of course.  I hate Florida, but am grateful that one of the laws here ,is that no matter how much I owe, they cant take my house, they can put a lean on it, but they cant take it.  I was able to get help from my county for my hospital bills, but they wont pay the Dr, or all the other people that fill up that team.  Those Dr's and hospital have their own indigent care fund, but I don't live in their county.  I asked my Neurosurgeon, if maybe I should just go to Tallahassee Memorial, and he said they would just send me there.  He did tell me to relax, that as long as I keep my blood pressure low, I probably wont have another bleed. and If I cant do that then they will do it on an emergency basis.  Unfortunately, I was very, very lucky to survive the original one, and then add to that the vasospasms. and I think I have used up my luck.  Relax, hmmmm, right, sure.........

  I am still trying to apply for SSI, I am unable to get disability because I didn't pay in this last year so I didn't have enough credits.  but what I really want is medicaid,  I have the crappiest primary care Dr.  but its sliding scale, only $10 a visit, and lab work at the local hospital is free.  I need a neurologist, these college educated people here in good ole Madison county have no clue.  I actually have refused to ever see the actual Dr. again.   I now see his Physician Assistant.  I tried to talk to the Dr about some of the problems that I am having and why I cant work yet, and he laughed at me, told me it had nothing to due with the Brain Injury, it was from being peri menopausal, and He wanted to prescribe Prozac.  Didn't ask me any questions about anything. and just winked at my husband.  and I now fantasize about kicking this Man in the nutts, lol......   

    But I have to make due, because I cant get medicaid unless I am pregnant, or have ssi or dissabilitly,  If I can convince a lawyer to take my case on the ssi, I might eventually win it, but it could be years.  I have tried to explain to all of my Dr's that something is broken in my brain.  and they just smile and say that depression is normal for what I have been through.  they offer drugs for it, but I keep trying to convince them that it is not depression.  I am depressed, but most of it is from the frustration of nobody listening to me.  and I cant fault them for that either, because I rarely finish a sentence, or a thought, before I get side tracked on something else.  But Something that has been bothering me lately, is that everyone keeps focusing on the depression,  I cant read a book because I am depressed.  I cant drive my car because the depression is causing me to have a panic attack.  I have been depressed before, and even had anxiety and panic attacks, this isn't it. but I don't have a degree. so they don't listen to me.  Unfortunately because I don't have that degree, I don't know how to explain my symptoms so that maybe they will understand.  But I keep digging and googling, and I know its neurological.  I actually have been looking at "Executive cognitive impairments"  Hello.........  thats me. lol......  My attention span is shot, and my memory is shot.  When I try to read a book, I cant pay attention. past 1 page, so I tried to just read one page at a time, but I don't remember what I already read.  I have also tried, just reading some magazines or the newspaper, and stick to small articles, and I can do that for less than 15 min. and even then If I go back to read it again, its all new to me.  I have tried to force myself, and all that it accomplishes is my brain acts like it is on overload, and I cant keep my eyes open, not for one second more.  The same thing happens when I attempt to drive.  I now have a standard, and all the clutch pushing and shifting I have to do just to get to the end of my street. and I need a nap.  I cant go any further.  hopefully someday I might be able to get an automatic, but I never really realized how much attention driving requires. lol.   I just cant do it..

   But anyway, I have been writing this since 7 am, because I have to walk away and do something else about every 5 min, then when I come back to it, I have to re read what I wrote,, and remember enough to keep typing, lol.  It is now noon time.   so somethings might not make sence.  but wanted to leave this on a good note.  The kids are doing great.  Paul and I couldn't be any closer. he has so much patience with me.  and as much as it seams like I am depressed. lol.  I laugh all the time.  I keep telling Paul that I just want to go dance naked in the rain, but I am sure that there is some law against that here in the bible belt.  But what I am really saying is that I love my simple life, and all this crap, is making me love it even more.  I see things more beautifully now.  

   Lots of love to you and your family's, and I will try to write more.  

                                                Shelby

 

posted on face book on july 13,2011

Diary of a crazy woman. caution, not my usual cheery self.

by Shelby Severance Bedard on Wednesday, July 13, 2011 at 1:52pm

today, I am broken.  I need way stronger glue, to keep me together.  All I can keep thinking is that I really need my Mom.  I just want to call my Mom, and tell her that, but I cant let her know how much I need her, because she is far, far away taking care of her husband who is suffering massive after effects of chemo and radiation. and I cant add this stress to her already stressful life.   I really cant wrap my head around why Doctors keep us alive.  Wendel, my step dad, appeared to be a very healthy man 10 yrs ago.  He ate well, Jogged, swam, etc......  Then he had a colonoscopy.  Today, he is a shell of his former self. probably not even 100 lbs, cant walk, sits in his chair all day, in and out of sleep.  He used to be an artist, but now has sold all of his supplies because he cant hold his hand steady.  He doesn't have to worry about his colon, thats gone now, he proudly poops in a bag.  But you know what, He needs to be happy, and grateful, that he's alive.  The Dr's got rid of that cancer.

         If the Doctors hadn't found that cancer,  he wasn't sick when they found it, he could have probably lived a decent life, pain free, for even a couple of years. He wouldn't be with us today, but who is here with us today, a broken man, that probably is asking himself the same questions that I am.  Why......???????  

         What is the purpose of me still being here.  is it to save all of you the heartache of my untimely death? or the pain of a sharp knife of a short life? I beat all the odds by surviving this, especially beat the odds because I waited 3 extra days to go to the hospital for a wrong diagnosis. Shit, I should of freakin died that day.  but somehow, some way, I hung on for 2 more days.  After the surgery, It was a wait and see.  most people that survive what I had survived up to this point, die any way, for up to 30 days after that. but no...... not me.........  Why?????    

        I dont remember anything from day 4 of my dying  untill sometime in ICU when I started coming back to life.  So If they hadn't fixed me, I can tell you, I wouldn't have known.  I don't blame my husband for doing what he had to to help me, but I do blame the Doctors, for not realizing that sometimes playing God, and saving people is extremely selfish.  If They had just let me die, Everyone would have hurt, probably really bad, I was a nice person after all, lol.  but.......  that was 7 months ago.  People would now be starting to heal.  

       I have learned from my support group, that life will never be back to normal, that the only way to mentally survive this hell I am in, is to accept that today is my "New Normal"  Tomorow is going to be my "New Normal" and the day after that is going to be another "New Normal"  I usually can deal with my daily normal, but the way it affects everyone around me, is slowly killing me.  

      My husband is the best, I couldn't ask for any better.  He is so patient, and so kind, and so loving.  But I cant stop myself from crying when I hear his voice on the phone.  The poor guy is at work, just checking to see if I took my medicine, or how my day is going, and I lose it.  more and more everyday now.  We use to be eachothers rock. we were equal partners, in our life. now he not only has the burden of it all, but then he has me having a nervous breakdown everyday.  

   My son Tyler, :)   Tyler was diagnosed bi polar when I had to have him committed on mothers day 4 yrs ago.  life has been up and down with him ever since. The one constant I know, is that if he is really  having a bad day, I can grab a hold of him, and bring him back to Mom.  I was his rock.  He was spiraling out of control and off his meds when I Went into the hospital.  completely went out of control while I was in the hospital, and then got hit by a semi while driving my SUV a month after I got out of the hospital.  Luckily he and his friends escaped unharmed, but my SUV went to its grave that night.  Needless to say. Tyler is now back on his meds, been on them for a month, and I see a huge difference in the way he handles life, but there isn't a drug for a 23 yr old boy to  be able to handle witnessing  his mom break down everyday.  I can see the fury hidden in his eyes.  I am doing way more damage to him, than he could ever do to himself.

    Then there is my youngest. My beautiful daughter Nikita. I knew she was different right away, every one that met her, would comment that there was an old soul deep in there somewhere.  I have done lots of research into her little idiosincrasies, and always felt that there was something... some little hint of autism.  and I have narrowed it down on my own to her possibly having asperger syndrome.  But I didn't want to get her coded as autistic in school, because none of it affected her grades.  But she never really got any help with her social issues either, and aspergers basically affects you social skills.  they don't have empathy, so they can be really mean or say really mean stuff, and walk away, they don't realize what they just did.  but at the same time, they don't read body language, They dont understand when someones tone is changing that they are pushing too far, and they keep pushing.  They just dont recognize it. at all.  and I have always made excuses for her because of this. but what she keeps failing to recognize, is that now, when she says something mean to me, I not only get hateful, and get mean right back.  and then I play it over and over and over again in my head, word for word, untill I see her again.  while she just walks away, not knowing how bad she hurt me.  She is 19yrs old moving 6 hours away in 2 days, with her boyfriend.  and beyond stressed out.  I cant help her, I keep trying, but all it does is raise my blood pressure, when I dont react.  and she keeps telling people that I say mean stuff to her, that I never said.  I did tell her once about 4 months ago, that I wish I had died, but that was because she was being so mean, and she keeps wanting me to go back to who I was, and she wont listen to me when I tell her I cant.  If I had died, she would have to accept it.  She really needs to love me for who I am now, and she has no idea who I am now. and Its killing us both.  

     Then theres just me......  I am trying so hard to get healthy.  I work out 6 days a week, alternating aerobics, and weight training, Paul, georgie and I go for a brisk 30 min walk every morning.  I have completely become addicted to vedj, and olive oil.  only eat red meat as a treat once a month.  I quit a 30 yr addiction to ciggerettes.  I am doing everything possible to lower my blood pressure.  the only things left to do, are lose weight, and remove stress.  Last week, my blood pressure was dangerously high. had to go in and get my meds changed, found out that I gained 3 lbs since my last visit, and because of my age, no matter how hard I work, my metabolism might not let me lose weight.  and avoiding stress,????????   hah, read all the above over again.  lol....   The new meds make me sick, can barely stand up. Yesterday, I knew my in laws were in town, and was totally looking forward to their visit, made sure I had lots of extra sleep, so that I could handle the day.  We had a wonderful visit, but this morning I realized how much I have changed.  We went out for dinner, and I couldn't read the menu, I started to, but then my Brain felt that it was going to seaze up. So my Husband had to order for me.   all I could really stay focused on was the fact that I had put on my ugly flourescent green crocks, instead of my flip flops, lol.....   and I totally felt like I was sitting at the kids table.  No one made me feel this way, and I think that they were all unaware.  but I was unable to join in any of their conversations.  But I had a good time, making faces at my Adult children who could care less about the adult conversation.  It was just a shocking realization today.  I do most of my communicating with adults here on line, and I can type like an intelligent person, but I have all day to think about what I type, and how I say it.  Its a totally different thing out there in the real world.  and then when we got home, Nikita started venting again.  and I kept my mouth shut, I just got up and said I was going to bed. leaving her with her dad, and she got up all pissy that we were mad at her, and went home.  I wasn't mad, I just am not able to deal with stuff.  

          I am still wondering what the hell my purpose is for still being here. and I am ok if there is no purpose.  but damn, its getting tiring, taking two steps forward just to slide 5 back.  I wanted to add that while I was writing this letter, my Mom called. :)  and I cried to her about how much I needed my Mom.  and told her how much she needed to hug her husband today, that I am sure that he asks himself this question everyday.  Why ??????????

  Want to add a disclaimer, that I am not writing this here to get any sympathy, or pats on the back for making it this far.  I just needed to vent.  and I would have done it on my support site, but I don't want to bring any of them down, or hear how greatful I should be to be alive.  I will try that aproach again tomorow.  

Posted on my support group blog on May 12, 2011

 I just had my 6 month angio, this past monday  I was petrified of this because I was unconscious the first time, and really couldn't fathom being awake for this.  but at the same time. I couldn't wait to get it over with and to find out that I was healed. It was over.  Even though at my 3 month ct scan, my neurosurgeon explained that more than likely he needed to add more coil, because he had to stop early during the operation because I went into vasospasms.  I will blame it on the short term memory thing, lol. but I really thought He was going to say that I was ok.  

     He not only needs to add more coil, but he wants to add a stint to protect the neck.  I just looked at him and said ok,  but thankfully i discussed it with the nurse, I really wanted to know what the heck was wrong with my neck  :)  and she pulled out a pamphlet to show me what he meant.  

      We have scheduled it for june 20th.  and all I want to do is go back to bed.  cant stop crying, picked a big fight with my best friend yesterday.  today all I want to do is hug her, but my husband wants me to wait until tonight to see her, because I don't fight too fairly lately, and he believes I was justified in getting mad at her.  and he knows that I will be a blubbering mess when he gets home. so he needs to be here to keep the sanity.  lol...

      I am so grateful for this site,  I read a lot more than I type.  Some days I do High fives with all of you, and do a testify dance, lol.  You people know exactly what is going on in my head.  other days, I realize that even if I adjust to my new normal, tomorrow can give me a new normal.  I try to just laugh about it all, Its easy to do. I laugh for hours some times.  

      this is my first attempt at blogging, I am going to try to do it when I am happy too, not just when I am sad, but I figured this might help me get up off my pillow for a while.

     Did want to add that when they were prepping me for my angio, they asked me if I was familiar with what was going to happen, and I told them that I belong to this great support group, and that they walked me through what was going to happen, and they were excited that you all were here for me. :)  thanks for letting me vent.

Originally posted on FB on May 4th

My struggles with life at the moment, and to let you know that I am "WINNING"

this was originally posted on Face book.

by Shelby Severance Bedard on Wednesday, May 4, 2011 at 2:44pm

Hello fellow friends, family and gamers.

     I tagged all of you in this note, so that I could explain why I seam a little different lately.  On December 9th, I suffered a ruptured aneurysm.   I didn't know that this is what was happening, I woke up with the worse pounding on the back of my head and neck that I have ever felt in my life.  I got out of bed, and started to vomit, broke out in a bad sweat, and turned white as a ghost.  I should have immediately called an ambulance, but Instead, I took two tylenol, and went back to bed.  I usually get migranes 2 or 3 times a year, and thought ok thats what is going on.  

            This happened on a Thrusday morning, and I had a headache all day on Friday, and Saturday.  But they werent as bad as the original on Thursday,  just a severe annoyance.  Finally decided to go to the hospital on Sat afternoon.  My blood pressure was extremely high, and they asked me if it was always that high, and I made a joke that yeah, whenever I have to go to the Dr.  I don't have insurance, and cant afford a  bill for just a headache. They diagnosed me with Hypertension, and kept me around a while to see if they could get my blood pressure down with meds.  they didn't but they sent me home anyway.  

          I remember coming home, and making those calls to worried family members, to let them know I was ok, but I dont remember much after that.  

      Paul took me back to the ER on Sunday, and I guess I was very confused, and not really there. and he demanded that they dig a little deeper.  so they sent me for a CT scan.  and It wasn't long before they had me in an ambulance, and heading for the Neurological unit at Shands memorial hospital in Gainesville.  

          The next two weeks were a blur.  Because I didn't know what happened to me, or where I was, evertime I woke up, I was scared to death, and It would take about 10 min for them to get me to understand that They weren't there to hurt me and that They weren't Usher, Brian Austin Green, and Vince Gill. lol,  I don't know why I would be afraid of these people, lol. but that was my wonderful brain at work, and they really did look like these people.  Reba was there too.  We had to go through this everytime I woke up,  Very scary, and Thank the Lord I had my Rock, my wonderful husband Paul with me. (he never left) He would hold my hand, and talk to me, I wouldn't know who he was, but when me, the real shelby started coming around, I could see the happiness in his eyes, and it would quickly pull me back to reality.  My room with no windows, and lots of beeping sounds.  most of the people on my floor were on breathing machines, and it irritated the crap out of me, because the beeping that they made, sounded like the "State Farm is There" song, and I thought how cruel to advertize Insurance to people in coma's on breathing machines.  

          Most people dont survive what I did, and even though I survived. there was a very big chance, that I would die within the week.  and the odds of my survival weren't good for atleast 30 days.  This is because of Vasospasms.  This is basically your brain saying Hell No, and squeezing your blood vessels in your brain shut.  This happened to me during surgery, so they had to stop early, and I might have to go back and let them finish the platinum coil they were putting in my aneurysm.  Paul absolutely refused to let anything negative affect my recovery, so I still Really had no clue, 

what had happened, (I kept forgetting)  

          One day, in the begining, Paul left to go get a coffee, and I woke up while he was gone.  I couldn't see my 

 nurse around either, so I very quickly decided that I was getting the hell out of there.  I ripped my IV's out just like you see on tv, and promptly stepped out of bed, and immediately fell to the floor, and hit my head, and passed out till the nurse found me.  If any of you have ever been in the hospital for a while, they put this damn massage sleeve on your legs, to prevent blood clots. and that is plugged in to the bed.  This is what stopped me from my escape. But for the rest of my stay, I had a sitter, I loved these people, I would talk nonstop with them, untill they would tell me that I 

 really needed to sleep.   I can only imagine what they thought of me, I can only imagine what I said, I mean think about it, what would you say to Usher,  lol   Poor Paul was locked out of the ICU for a couple of hours, they only told him that I fell, and wouldnt let him in untill I was stable.  He wouldn't leave me alone after that.   

        They sent me home on Christmas eve.  It took me about a month to get my strength back and we are still amazed, that I am walking and talking, to look at me, you would never know that I went through this.  at first, I couldn't type.  I would put my fingers on home row, and think I was hitting the right buttons, but lol not a chance.  I kept at it, and got it back, but if you see any typo's here, I try really hard to catch them, but you know, life is too short to sweat that small stuff.  , lol.  I had to quit all of my games, just going in to collect my gifts quickly overwhelmed me.  Hell, Solitaire overwhelmed me.  but I kept on it, and can now win at solitaire, it just takes me a long time.  

        I now have the attention span of a puppy,  and my short term memory is shot.  I cant read a book yet, its not that I cant read, I cant stay on the page long enough to comprehend what I am reading, and even if I could, I 

 probably would forget what I read anyway, lol.  infact, this note, is taking me all day to write, because I have to walk away, and I keep losing my place,  and having to read it over and over again to figure out what I was trying to say.  I am still not driving much. I have been cleared to drive, but my thinking is, if I cant keep my attention on a good book, what makes me think that I can keep my attention on the road, lol.

           If I am really tired, I talk alot, very fast, and sometimes it gets jumbled, and although I knew what I said, you would have no clue,  this has happened to me a couple of times out in public, and the looks on peoples faces, has caused some severe anxiety attacks.  

         My biggest problem at the moment, are my emotions, and that gets me to why I am writing this note.  especially since I have recently found out that not all of you know what has happened.  I have been really mean lately.  any one that really knows me, knows that I don't have a mean bone in my body.  But I get mad really quick now, and it escalates really quick.  Picture me out in the pasture with a machette cutting down weeds.  

       I know a machette sounds very dangerous, but have you ever hit a pine tree with a baseball bat?   that really freaking hurts. hitting a soft irritating weed and slicing in half is good for the soul. lol.  Usually it is because someone has questioned my intelligence, or offended me, or I see a Bully, and I want to call them on it, lol.  but sometimes, it is the way the wind is blowing today.  and when I am in this state, if you pissed me off, I pace and talk to myself for hours, and it escalates to some bitch teased me in first grade, and I know its your fault.  

         Just ask my brother, last week, he decided he was going to push my buttons.  thats what brothers do, it was all in fun, and love, but he had no Idea, what he had done.  I love you Nick, and I am so sorry :)   

         When I get too tired to foster this anger anymore, I break down and cry,  and I am talking, Hyperventilating, snot running, hysterical crying.  I dont like that evil mean person I become, but I have no control over it yet.  My son Tyler is usually here with me, and he is really good at calming me down, but when I start crying like that, he starts crying too.  sometimes he calls Paul at work, and other times, Paul is just calling to see how my day is going. and I hear his voice, and lose it harder all over again.  His wonderful, totally understanding Bosses, send him home everytime.  I am 

sure it is mostly out of concern for my mental stability :)  but I also cant imagine that he is very useful after hearing his wife go insane.

     But, here comes the best part of this insanity,  When Paul comes home and makes me feel safe, and loved again, thats when the hysterical laughter begins.  I am laughing at the madness, but I cant stop, lol.  I am litterally rolling on the floor laughing my ass off.  They say laughter is the best medicine, but this hurts, and I usually cant breathe.  

        Now, on to the good news,  I am not going insane, this is normal brain activity after a brain injury.  When blood rests on top of your brain, it kills the brain cells underneath it.  My brain had blood sitting on it for 5 days before it got cleaned up.  I am a walking, talking miracle, I get frustrated waiting for life to get back to normal, but this is my new normal.  I have joined a worldwide support group on the internet, and am learning new tools to handle the things that are really getting to me.  I have been tempted to Leave FB because it is the one place that upsets me the 

most, but at the same time, its where all my friends are, I cant walk away, I have 9 hours a day to try to entertain myself, I dont have cable or satalite tv, and I cant read a book, so this is where I am frequently through out the day.  

        Now that I have my strength back, I am finding some new things to do,  I quit smoking cold turkey after a pack a day habit for 30 years,  I am working out every other day. I had too, quitting smoking really tips those scales, but I am very excited.  I have one of those metabolisms, that only works when I am working out.  I am going to be one sexy hot 

 mama in probably 6 mos.  maybe less than that, I have begun substituting all my bad fats with nuts and EVOO, my red meat with fish, and my sugar cravings with fresh fruit.  I am eating tons of vedgies. and fruits.  thats another thing that happened to my brain, my taste buds have changed.  I have always hated mushrooms, and when I got out of the hospital, I told Paul that I was craving mushrooms, I wanted a big portabello sandwich.  I have always hated peppers too, and Paul told me that when I was in the hospital that I ate a ton of peppers. so needless to say, this weight will be gone, my blood pressure, and cholesterol should be better, my breathing will be better, yay.

          I am only 44, my kids have grown, and we are working on getting the last of them out of the house.  I am celebrating my 25th wedding anniversary this dec. and I am going to be extremely healthy to enjoy this new phase in my life, heres to another 25 yrs of wonderful wedded bliss. 

            I am going to Shands again this following monday, May 9th for my 6 month follow up a little early so that they can see if they need to fill that bubble more. Its outpatient surgery, but still scary as hell, and there is some small risk involved.  They will be performing a cerebral angiogram, for those that dont know what that is, they will be inserting a camera into my femoral artery, (in my groin) feeding it through my artery, into and  through my heart, then up into my brain, to look around, all of this is done while I am awake, and I should be home monday night as long as it all 

 goes well,  can you tell that I am a little scared?  lol.    

            So, to end on a good note, I want to say I am sorry if I have offended you, sorry if I have hurt your feelings.  I never intended to do that, and beat myself up over it more that you could ever think to do.  I will probably do it again.  and then I will refer you here.  It depresses me to keep saying that I am sorry, and telling this story over and over again.  

          and when I heal completely, and have accepted my new normal, lets go have a beer.  :)