Back in the Loop

So in my continuing effort to live like I have no pain, I have now gone out past 9 pm 2 weekends in a row.  Woo Hoo!  It's nice to be around people.  Good music, good conversation and good ole people watching.  No one sees I'm really in tons of pain, and I like that.  Having a conversation that does not reference my health is pretty refreshing.  This is my Fake it till you Make it experience.  Even though I was pretty much a hermit for 3 years I surprisingly still know quite a few people out and about.  I think I should make a habit of going out at night at least once a week.  And by night I mean out past 9 pm.

I'm also now trying to live!  Really Live!  I hitched a ride on the back of a motorcycle the other day with and old friend.  It was exhilarating!  We may have gone over 100 mph a time or two, maybe.  I'm not saying I'm going to start toying with my life, I just want to do something crazy to remind me that I am tough.  Next on the list, airplane acrobatics.  Yes really, I know someone who does this.

This summer I did some traveling.  Most of my close friends live far away from me, so getting away for a few days and seeing a new city with an old friend was just what the doctor ordered.  I plan to keep up this "travel therapy" as long as I can.  My body may be saying "Oh Hell No", but my heart and head are saying "Oh Hell Yeah"!

I can't predict what is next for my body, but I can try to live life to the fullest.  Life is pain and I'm choosing to suck it up and carry on.

Back to Reality

Back to the Doctors.  Oh well, it was nice while it lasted.  My summer of blissful ignorance is over.  It was time for some more material for my waiting room stand up anyway.  :)

Vent

Gotta vent.  There are few phrases that make me cringe more than "must be nice".  Assuming that you know anything about another humans life experiences and then making a snide comment when they have any happiness is just hateful.  Think before you speak.  We all have our blessings and we all have our curses.  Some you can see, others you can't.  I'm traveling a lot this summer, because I can.  I'm choosing to ignore all health issues and just take time for me.  I've spent too much time stuck at home because I "can't move".  You can't tell by looking at me what I've been through and I can't tell by looking at you.  I'm not looking for pity.  Just think before you decide that another human being does not deserve there own bit of happiness.  That is all. 

Long Time No Blog

I've been neglecting my blog.  Time to get back.  So, last month I made the very unwise decision that I would stop taking all my pain meds.  Cold Turkey.  Just threw them away.  Bad idea.  My hair was turning to straw and I thought if this is whats happening on the outside of my body, what are these drugs doing to the inside?  Needless to say, 2 days after quiting all meds, I was coming out of my skin.  I was rocking in my bed, crying and generally freaking the hell out.  I thought I was having a nervous breakdown.  Didn't really see the connection to the meds until I spoke with my doctor.  I was placed on a medication to help me through the with drawls and then I was able to taper off of that medicine.  I have since switched up my meds to less powerful ones.  I have more energy now, but it's like nervous energy.  My legs and arms feel like they are crawling.  I'm stir crazy.  The pain is the same, I just don't want to depend on a medication like that again.  Life is pain, I keep telling myself that.  Life is pain.  I don't really see it as a bad thing.  Pain stops when you are dead.  I plan on sticking around. 

J O B

It's been quite awhile since I've blogged.  I have much more to tell.  But now for some good news.  I got a JOB!  I feel like a contributing member of society.  It's perfect for me.  2 days a week and a couple of hours a day.  I'm an on air host for a local channel that will air local films by local filmmakers.  It airs Thursday nights at on KLWB at 8pm.  Right up my alley.  The first show airs this Thursday, April 14th.  They can work around my issues if needed. 

Interesting Article

http://pagingdrgupta.blogs.cnn.com/2011/02/23/mind-body-inside-chronic-fatigue/?hpt=C2

Don't Give Up

Too many of my friends are suffering.  To them I say, Don't give up!  I'm here for you.  People are there for you and you may not even notice.  Connect with your friends.  When your down you need a friend.  I know I've felt in the past like no one wants to hear about my woes.  But I guarantee you they would rather listen to you then to see you give up.  Keep fighting the good fight.  You have purpose.  You are loved.  You inspire others. 

Leigha

To My Friends

To those of you having a hard time right now I'd like to say this.

What does not kill you, can only make you stronger.

Believe

That is all

Leigha

New Meds

I won't name them, but this new medication is making me loopy.  While some people seek out "loopy" I can't stand it!  I have stuff to do Yo!  I never drive within at least 4 hours of taking pain meds.  I took this at 9 a.m.  Come on now.  As for taking away the pain, that is still up for debate.  I would like my own personal physical therapist to stretch out my bones every morning.  Where can I find one of those on the cheap?  :)  The sun is out and tomorrow is supposed to be a beautiful day.  I plan on a nice bike ride.  I'm feeling daring, may go around the neighborhood more than twice!  My middle name is Danger!  The basket and bell on my bike just make me look more Bad Ass!  Musing of a person trapped at home.

Leigha

Weather

So how many of you think you would be excellent weather forecasters?  I can feel the barometric pressure changing, there's got to be money in that right?  I gotta figure out a way to market this.  The American Dream, making easy money.  Well, painful money but it's a skill any way.  If only my Titanium was magnetized, then I could travel the circus circuit, sticking various objects to my spine.  That may be kind of handy, no pockets, no problem, I'll just wear it on my spine.  I could start a whole new fashion trend. I could take the fashion world by storm!  The Cat Walk.  O.K. time to hit the hey before I start busting out the Right Said Fred.

Leigha

More of the Story

So after I woke up completely and the nurse got me up and into a chair my husband walked in with a shocked look on his face.  When he last saw me I was still lying in the bed and pretty much just drifting in and out.  He explained to me what had happened and that it all started with an overdose.  Right then and there I denied all pain medication.  I had a central line which is an I.V. with several ports that went through my collar bone area and straight to my heart.  The only thing I would allow them to give me was antibiotics, for the pneumonia, and food.  I had a feeding tube, couldn't even stand the thought of eating.  I also got shots of blood thinner and insulin through my stomach.  Every time a nurse touched my lines I made sure to ask what I was getting.  I was so terrified of being overdosed again.  I can't even describe how much pain I was in but the fear was stronger.  The nurses would beg me to allow them to give me meds to help with my sleep and pain meds, but I didn't trust them.  On the first night that I had been awake all day a new nurse was assigned to me.  My husband had never seen her and she was very rude to him.  They had a disagreement on how late he could stay with me.  I didn't want to be left alone, but I was in I.C.U and my husband wasn't allowed to stay past 9 p.m.  He sat and watched me until I drifted off.  I woke up shortly after.  I was in indescribable pain and just lay in the bed watching television and crying.  The nurse kept asking me to let her give me pain meds and something to help me sleep, but I was too scared, with good reason.  So when you are being fed intravenously you can get a little diabetic.  So I was getting blood thinner shots and insulin shots through my stomach.  At 1a.m. that morning a nurse came in to test my blood sugar.  She told me it was 116, I asked what that meant, she said it meant I didn't have to get an insulin shot for a couple of hours.  A few minutes later the nurse walked in and started to lift up my gown, I asked her if that was my blood thinner, she said "No, it's your insulin".  I said, I don't need insulin.  She said, "Yes you do, your blood sugar is 162".  I said, "The Hell it is, you'd better check again, I'm fully awake and on no medication that could affect my mind."  She was not pleased with me and said, "If I don't give you this shot you will go into a diabetic coma.".  I sad, "You are not touching me until you bring the other nurse back and re test me, I know what I heard".  She stomped out of the room all annoyed with me.  She returned 15 minutes later with a sweet little apologetic tone.  "You are right" she said.  I started crying, I was so scared, I knew I had to be awake to make sure they didn't kill me.  She said, "I'm so sorry, please let me give you something for the pain and to help  you sleep".  I said, "Oh Hell No! I obviously have to be awake to stay alive." I never saw her again after that.  It's hard to explain bone pain other than saying it's pure agony and there is no medication for it.  Just medication to make you not care.  I denied All pain meds until my last day and night in the hospital.  I was in for a month.  Most of that time in I.C.U.  I lied to my doctors and told them I had no pain.  And as soon as they left the room I would break down crying.  The nurses would come in to check on me in the night and see me crying.  Still, I didn't trust anyone at this point.  I wanted to make sure I didn't fall asleep and die again.  Finally my husband made me tell the truth to the doctor.  He called him in and told him I had something to confess.  I looked at him and said, "I've been lying, I'm in A Lot of Pain, but I'm scared of the medication." I started crying.  He said, "well this is a first, most of my patients lie about having pain so they can get more meds."  And here I am not wanting any.  He said, "I knew you were in pain, you just had major spine surgery." So we came to an agreement that I would not receive any pain meds unless I asked for them.  Found out later that had I not been awake in the I.C.U when the nurse tried to give me insulin I would  have died.  When I was awake in the I.C.U., I had a parade of doctors and nurses coming in to see me.  They were all there to see that I made it.  Most of them had worked on me when I first coded.  I didn't know any of them, but they knew me and were checking on me everyday before they started or left their shift.  It was very sweet.  When I made it out of the I.C.U. and back to the surgical floor, the nurse that overdosed me just sat holding my hand and crying.  She told me how worried she was about me and that after that she could barely drive home.  She said she was shaking too much.  She ended up being such a sweetheart.  I felt sorry for her, I can't imagine thinking that you may have accidentally killed your patient.  She would sit with me and hold my hand through all the pain.  I wish I remembered her name, I would like to visit her.  Would like to show her what I look like as a normal person.  Stay tuned for more fond memories in the future. 

Leigha

Part of the Story

So a very wise woman told me I should share my story.  I've been hesitant about the entire thing because I didn't want to seem whiny.  There is so much suffering in the world.  Above all, I believe things could always be worse and that I am very blessed.  So today I will tell the story of Spine Surgery number one.  Thirteen years ago I was involved in a car accident with an 18 wheeler.  I was a passenger in the back seat.  The truck first hit us with the trailer then the car became lodged in the wheel well of the truck.  We were then hit from the back and drug into 5 cars in front of us.  We were stopped at a red light when this happened and the truck was traveling in the lane next to us, approximately traveling at 45 miles per hour.  At the time of the accident my head hit the side window, the back headrest and then the headrest in front of me.  I did have my seat belt on, but I did take a beating in the back seat.  All I know is I had a terrible headache, but was not bleeding so I refused to go to the hospital with the ambulance.  Once I got back to the office my mother picked me up and took me to the hospital.  I herniated 5 discs.  Surgery was recommended but I decided to put it off as long as possible.  I kept it under control for 10 years then I woke up one day and couldn't walk.  Went to E.R thought it was a random muscle spasm until in happened again a week later.  It was time for surgery.  We found a neurosurgeon in Houston who is one of the best.  Never have surgery during a holiday.  My surgery was scheduled for July 2nd.  I have no memory of the drive up to Houston, checking into the hospital or getting dressed for surgery.  There are pictures.  My mom came up with us.  The plan was that I would be in the hospital about 8 days and then spend the next two weeks at my mother-in-laws until my check-up.  My first memory is of a dark room, a male nurse lifting me out of the bed and placing me on a toilet.  I remember begging him to leave the room because I wanted only female nurses for that.  I also remember horrible pain, begging my mom to hold me up, and lots of crying.  For those of you who know me, I'm not one to cry over physical pain.  This was the worst I have ever had.  My mother went back to Louisiana 2 days after the surgery.  My next memory is of my husband asking me whats wrong, I said I was cold.  I heard him press the call button and that was it.  My husband said I started shaking and then I started shaking so bad I was coming off of the bed.  The nurse came in and called a code blue.  Which is when you stop breathing.  Apparently I was convulsing and heart rate started going through the roof and then I just stopped.  At that time my husband said a security guard took him out of the room.  The next thing he saw was them rushing me down the hall.  Nurses all over me and it apparently looked like a scene out of a medical drama. This happened 2 days after surgery. The nurses would not let him back in the room.  Apparently some brutal stuff went down in there and they didn't want him to have to see it.  He was told to go down to ICU and wait.  A doctor told him that I had been overdosed and that it was medical error and they were terribly sorry for this mistake.  I went into Respiratory Failure and had to be intubated.  After that the rest of my organs started shutting down.  My iron level went down to a 9 and apparently you die at 7?  So one doctor ordered a blood transfusion.  They started to set it up when another doctor came in and said no, I was young enough to recover on my own, within and hour I was down to 7 and the blood transfusion was now and emergency.  We found out that I had coded while on the operating table as well.  My surgery was supposed to take about 2 hours and I was only going to have about a 2 inch incision.  It turned into an 8 hour surgery with about a 2 foot incision.  It was too much and I coded once on the table.  I think I started to hear things after the blood transfusion.  I knew I was in the hospital, but I didn't know why.  I knew I had something in my mouth and was aware that I couldn't move.  I could hear everyone talking about me but not to me.  My husband started talking to me and it was very comforting.  When you are intubated they tie you to the bed so you don't pull your tubes out.  Every time he came in he untied me and I could hear the nurses fussing at him for it.  But he always did and held my hand and talked to me.  Sometimes I could move my hands and sometimes I couldn't.  The nights were the worst.  I could hear other patients screaming and all the machines in my room beeping and the breathing machine.  I was so scared.  I had no idea what happened to me.  One time I felt the blankets come off of me and I heard 2 doctors talking about me.  They said, "What the Hell did they do to this poor girl"!  In my head I was yelling, "What, What, What"!  Found out later the hospital also forgot to take off my pressure stalkings which caused severe pressure burns on the inside of my thighs.  In three days I gained 20 pounds.  The organ failure cause lots of fluid build up.  The best way I can explain the feeling of laying there not being able to communicate is if you have ever seen the video for Metalaica "One", that's what it was like.  My husband said at one point they tried to take me off of the ventilator to see if I'd breathe on my own.  He said I choked and then stopped breathing again.  I don't remember that, but I do remember hearing the doctors tell him they didn't think I was going to make it and he should really call my family.  He was trying not to worry them, but the doctors didn't think my chances were all that great.  At that moment I thought "Oh Hell No, I'm Here"!  As you may know I use humor a lot in my life and thought "I ain't going out like no Punk Bitch"!  Yes, I'm a wannabe Gangster!  I knew I had to do something.  Somehow I remembered the sign language alphabet that they teach you in like 3rd grade.  My husband was with me and untied my hands.  I started doing the ABC's over and over again.  My husband knew I was trying to communicate somehow and kept dragging in the nurses who said it was just my nerves reconnecting and that I wasn't really there.  This just made me mad and I kept on and on and on and on.  Finally a nurse came in and said "Oh my God, she signing"!  My husband said my hands just fell to my sides.  He asked me if I wanted a pen and paper and I held up my hands.  I started asking what happened to me.  I then asked for my glasses.  I didn't understand why I couldn't see.  My eyes were shut.  Within the next couple of days they took me off of the ventilator.  That was by far the worst experience I have ever gone through in my life.  I was certain I was dying.  It's about a 4 hour process.  I never want to have to go through that again.  It felt like thorns were in my lungs.  They have to ween you off the medicine that keeps you from gagging before they can pull the tubes out.  My husband was next to me the entire time.  Willing me to breathe.  Every time I stopped I was so peaceful.  When I stopped breathing I would feel this warmth come over me.  I saw people everywhere, no one was talking, we were walking up a hill.  Once we reached the top we could see down to the ocean.  I could here the waves, feel the sunlight on my body and I felt nothing but love and comfort.  It seemed as if everyone was talking to each other, but there were no words, I could just feel it.  Love everywhere.  Then I would hear my husbands voice telling me to breathe and then I was back in the hospital room in pain, gagging, fighting to breathe.  Every time I stopped I felt wonderful.  But my husband was not giving up.  I thought well this is Heaven, it's beautiful here.  Then I heard my husband tell me that my friend Bryce was in the room.  That's Fr. Sibley, my friend who became a Priest.  I thought "Oh Crap", I really am dying.  They've called in a Priest!  He and my husband were on either side of me telling me to breathe.  I then remembered that he had been there before.  He came out to Houston while I was on life support and sat and talked with my husband.  I remembered how comforting it was to hear 2 familiar voices having a conversation in my room.  The process of coming off the vent went on for about 4 hours.  I started getting annoyed at the fact that I was vomiting all over myself and no one was cleaning me up.  I thought "Well, I can't die annoyed"!  The tube came out I cried, tried to speak to my husband and then he said I started hyperventilating again and he got kicked out while they got me back to normal breathing.  For the rest of the day and night, I just cried.  I was terrified.  I couldn't really communicate, it was more a whisper.  I saw people in my room, the nurse kept coming in telling me there was no one there.  The next morning a doctor came in, slapped my leg and told me the next time he came in he wanted to see me sitting up in a chair.  At this point I had no memory of anything.  I was scared and confused.  A nurse came in, I asked her if I was supposed to be there and she said, "Yes, you've been her for awhile".  She asked me if I knew my name, I told her, then she asked me if I knew the date.  I had no idea.  I started crying and she started asking me other questions like my social, address, phone number.  I knew all of those so she told me it was just short term memory loss.  I don't remember most of what happened in the 2 to 3 months leading up to my surgery.  But I certainly remember being on life support.  My hands are tired from typing and I'm sure you are all tired of this story, so I will continue at another time.  Stay tuned for the next installment of "The Days of Leigha's Nine Lives".  :)

Quote of the Day

Pain is inevitable; Suffering is optional.

Unknown

Natural Remedy

O.K, this is something I swear by.  I am not a salesman but I could sell the hell out of this.  I love the Arnica Patches by Natural Patches of Vermont.  I first discovered them while at a conference in the Ritz Carlton Spa in South Beach, FL.  My Fibromyalgia was acting up when I saw these, I'm always up for trying something new.  Within 30 minutes of putting this patch on, the pain went away.  I know everyone is different so we all have to discover our own ways.  But this is beyond Awesome for me.  It's an herbal patch that you place right over the pain.  It lasts about 12 hours.  I've only used them when I knew I wouldn't be running around because they are adhesive and will slip if you start sweating a lot.  The day I discovered them, my knees and ankles were particularly bothering me.  I cut 2 patches in half and placed one half on each knee and ankle.  Presto!  Pain went away.  I like to try alternative methods, medications often stop working and the side effects are not so fun.  Plus, I'd like to spare my kidneys and liver for a bit longer.  You can buy these patches straight from their website.  They offer a variety of herbal patches for different things, Arnica is the one that works for me.  http://www.naturalpatchesofvermont.com/arnica .  Love This!  Also if you happen to be in South Beach, visit the Ritz Carlton Spa, they carry them  http://www.ritzcarlton.com/en/Properties/SouthBeach/Spa/Default.htm .  I found a store in Lafayette, LA, Remedies, that carries these patches also.  http://www.remediesforlife.com/c-3-neck-back.aspx .  Try it out, it just may work for you.  On that note, I need to go get some. 

Leigha

Random

OK, so I have a question.  How many of you experience weird sensations in your arms and legs?  You know those commercials for Restless Leg Syndrome, the creepy crawly feeling, bugs under your skin, have to get up and walk?  O.K., I have that in my arms and legs on occasion.  Usually when I get into bed at night.  It drives me mad!  I get up stretch, lift light weights, swing my arms around.  I have no idea what causes this.  Could it be medication?  Demon Possession?  What the heck is this?  It usually last a couple of hours and then stops just as fast as it started.  Never happens during the day, only at night.  Read the side effects on all of my meds, no mention of this.  Acckkkk!  Please, does anyone know what this is, I'm desperate for a solution.

Insomnia

For all those who have sleepless nights, I have a few tips.  I am not a doctor, just a fellow Insomniac.

Lights:  Back in the day before electricity your brain was sent the message that dark is bed time.  You gradually slowed down with the setting of the sun. 
In your own home: Start dimming light about 3 hours before you go to bed, this includes computer screens.  All of this artificial light makes your brain think it's still day time. 
Bedroom: This includes that bright alarm clock.  I cover mine when I go to bed.  The phone also emits a small red light, I cover this also.  Any artificial light in your bedroom should be covered.  Unless of course you need a bit to see if you get up in the night, then I suggest a very warm night light away from your field of vision while in bed.

Rituals:  Design a nighttime ritual for yourself.  I start dimming lights about 2 to 3 hours before I go to bed.  I drink a cup of chamomile tea as well.  I try to avoid all the multitasking I do most of the day, like surfing Internet while watching t.v and texting.  I start focusing on just one calming television show. 
Your Computer: Studies show that the light emitting from your computer can trick your mind into thinking it's time to be awake.  This is a step I haven't mastered yet.  Still working on it. 
Bedroom:  You should not watch television in your bedroom.  I know sometimes when we are in pain and need to be away from it all on the heating pad in our bedroom this is sometimes a necessity.  I try to avoid watching t.v in bed.  Think of it this way, your bedroom should be just that.  The place you sleep and one other activity I don't need to mention here.  Make your bedroom your sanctuary, paint it a warm color that you love decorate it for your comfort. 
Scent Ritual: Jasmine and Lavender are both calming essential oils.  While getting ready for bed, I spray lavender all around my room.  I also have lavender pillow mist.  When I get into bed I rub lavender lotion on my hands, temples, and neck. 
Noise:  I started using a noise machine years ago.  I cannot sleep in complete silence.  When at home I set my noise machine to "Ocean" waves, this is very relaxing for me.  White noise is helpful to me also.  When traveling I use my I-Pod .  I have a few relaxing albums I play.  Music is a little difficult for me because my mind tends to pay attention to the changes in tempo.  I cannot sleep with a television on. 
Regular Hours: Try to go to bed and get up at the same time every day.  I use the word "try" because we all have fluctiating schedules, but it's a good way to train your body. 

Exercise: Try to get some excersise in during the day.  I know for many of you that is sometims quite limited.  But even just walking around your house and stretching can help.  I really like stretching when I first wake up and before I go to bed.  It seems to warm up my body. 

The thing is, even with all these things that I do I still experience sleepless nights.  I do take Ambien and am amazed that I can be wide awake while on it.  I know of people that take it and are asleep within 10 minutes.  Wow!  Jealous!

I'm hoping this may give some of you a little relief.

May you sleep tonight.

New Year

So last year I made a New Year's resolution.  The first one ever.  I resolved not to be in an Emergency Department for the entire year.  If you don't count the 4 surgeries and the boat trip to a medical clinic in the British Virgin Islands, then I Won!!!!  Woo Hoo!   This year I'm going for no surgeries in 2012.  And since the Mayans said we're all dying in 2012 then I won't have to make any more resolutions.  That is all.

Live Long and Prosper my friends,
Leigha