happy thanksgiving negativity

ok so after some major life displacements have taken occurance as of late, especially the last 3 months, i haven't been truly feeling very thankful about anything.

looking at these pictures doesn't help.  and now, looking at a different phase of pictures helps even less.

however, today, thanksgiving 2013, as i took part in 2 things, that i am not medically supposed to be able to, or emotionally or physically or mentally, i can smagrin.

this morning i ran my 3rd 5k by myself.  9a turkey day 5k.

my legs and my right side throb.  my lungs are killing me right now.  i feel the slime building as i attempt to cough no more.  it hurts my chest, but i don't want to cough big.

and i was still able to make it on time to work today, 11am to 9pm.  yes that is a 10 hour work day.  bussing.  so, carrying, balancing, not tripping when my ankle wants to give out, not running into the millions of non stop customers because i have no perifrial vision AND making sure i am not dehydrated from the run and now from work.  so lots of drinking apple juice.  and i know now that calories are so vital to the human system when working alot.  but there really wasn't time to eat, not in 10 hours!  but now, i got my two croissants, and i will be thankful for that.

i am also very thankful for my new co workers.  they all endured as well and they had good attitudes.  that means so much to me.  i try to exemplify good attitude and i feel like my time is wasted when others don't try, even when they're standing right next to me, complaining and bickering, etc.  but not today.  why does it have to be only one day?  that's not a complaint.  it's a question that negativity shy's away from.

happy thanksgiving negativity!!

Shawnee Mission Medical Center months

So, this is days after waking.  To get you up to date from the last few weeks of a coma to this picture shoot:  Around the first of three weeks while in a coma, I experienced Arrhythmia.  I had "rapid arrhythmia" first.  My chest, my heart, would pound so fast causing the sheets to lift up off me.  I was told this freaked out my parents and probably visitors.  Then i would have slow arrhythmia along with irregular arrhythmia.  

then the heart just stopped.

it was stopped for a few minutes.

no electric signals going to my brain.

my brain also stopped.  

no oxygen.

the doctors asked my parents if they wanted to revive me and it was allowed.

But the doctors had to warn my family that because they're not reading any brain signals, because my heart stopped and I was technically brain dead, I was expected to be a vegetable.  They did tests, run a sharp object down the bottom of my feet and yes there was a response but that was mechanical.  They still weren't sure if I was going to #1 wake.  #2 be cognitive if I did wake.

Then I had high high fevers.  In order to bring my temperatures down they brought in fans, put me in tubs of just ice, opened the ceiling and lowered a tube from the AC Venting shaft and positioned it over my bed.  People were wearing coats while I lay almost naked on my bed under freezing blowing winds!  

With whatever fluid building in my lungs, gel was forming, mucus, and pneumonia filled both my lungs.  Double pneumonia.  That also increased my fevers, and lengthened them.  It was noted that if the high fevers didn't take me, the double pneumonia would.  

Meanwhile, they were still dealing with the AVM, which they did not realize was what it was.  But they had to drain the blood that was just spraying all over my brain from the arteries and veins that were tangled.  It was also stated that to picture it, it would look like a fire works display.  Just not as beautiful.  

So as blood was being drained and drained and drained, over the course of 3 weeks, my weight dropped to nearly under 70 pounds.  I went from a 135 pound muscular weightlifting basketball/football athlete to a 70 pound kid sized adult.  20 years of age smaller than a 5th grader.  But I still looked somewhat "fit" because they had to fill me with fluids, so much, and that caused face swelling.

Of course my blood pressures were sky rocketed, same with my ICP's.  Because the enormous amounts of blood in my skull the doctors had few choices to make in order to lower the pressures, or stop the blood flow.  

Choice #1: cut out part of my bone skull, lift is up, and let the brain stop swelling from too much blood in place of normal brain tissue and normal brain fluid.

Choice #2: fill my head/skull with little bitty beads in hopes they replace what area/space the blood clot is taking up.  

Choice #3:  let time take it's course and hope the swelling subsides while inserting tubes in my skull to drain, hopefully relieving the pressure.  

They opted for Choice #3.  

Since they didn't replace the blood with beads, the blood continued to seep through my eyes and nose and ears as it started to at Michelle's house.  With all the blood that filled my eye and ear cavities, it was said that I was to be blind and deaf.  I also had mini seizures often.  That too was to be a sign that I will wake non cognitive.  The estimate total amount of blood drained from my brain was a little over 6 Liters.  I had to have 2 blood transfusions.  No wonder I went under 70 pounds.  But, yes, I couldn't do alot of things on my own like breathe, eat, etc.  So a feeding tube was inserted in my gut.  The breathing tube was placed in my throat from the beginning.  I believe they used a pen to pop a hole through my throat.   

Immediately to ward off infection after infection, I was given so many doses of medications.  I was under around 30 different drugs.  That also did damage to me internally.  Any pictures of me during this time show me as not a happy camper, but that's because I'm not camping.  I'm hospitalized.  Not fun.

The bleed took place in the hypothalamus and to all 4 ventricles.  It's primary position was barely on the left side of my brain which when I did wake, the right side of my body had next to nil usage or ability.  Along with the posturing, which was the immediate first sign of brain malfunction, from Michelle's house, I had a long road to physical rehabilitation.  I still barely and rarely posture which causes any running to be painful.  

A day after I woke, they put me back under so that a shunt was placed in my head.  

It is permanent.  

Everything is permanent.  

Experiences are permanent.   

What happens from the experiences doesn't have to be permanent, though.

And I am trying to not be permanently angered from this, permanently damaged from this.

I don't know if it's noticed in my blog, but I just started a life of "loss" from April 26, 1998.  And it spanned and spanned and spanned.  

And I have no idea what to replace the loss with because that is the first inclination, as a human, to do.  

Not compensation but rectification.  But I am realizing, that while back here in earth time and space, not everything is correct or right.  And that is wrong.

Yet, no one is to blame.

NO ONE.

T B I #1

So cool.  I have found some more information about what happened to me 15 years ago, that I've denied and ignored since then.  Well, I am still here 15 years later, and what I didn't want to know could still kill me, unless I know more about it, which is knowing more about myself, too.

So I was told that what happened to me falls under the category "Traumatic Brain Injury".  While I was trying to get over the horrors of rehab and drugs/medication and radiation and steroids and more rehab and more rehab and restrictions, I wanted to stay as far away from "what happened to me" as possible.  That is why I had a relapse less than one year ago.  A melt down.  A crack.  Whatever.  I lost it.  Then I lost what mattered most to me.

She only mattered most to me because of what Therapists told me: I will never marry.

They told me so much more of what I will never do.  And if people know me, don't ever tell me what I can't or won't do.  Challenge gives birth to spite and spite's twin is the ax head blade.  Because of rehearsing those horrors of being told so many negatives, I would pound my head, over and over.  Whether from my own fists or a steering wheel or a dash board or a wall or a table or a tree or a bat or the glass of a picture frame, I would resort to that as a relapse.  And it never hurt cause my anger for that injustice hurt more inside my soul.

This I believe is a part or effect of TBI.  For these last 15 years, I never received the support I needed and still, I don't believe it is apparent.  I shall see where this information about TBI leads me.

http://www.brainline.org/landing_pages/categories/abouttbi.html?gclid=CN3V56yovLgCFY87MgodgisANA

article G

the picture in this article was taken while comatose.  the article was written after i woke.

FMMJ: 5/9/1998 - 5/11/1998

Saturday May 9, 1998

Jered's fighting fevers all day. It comes and goes but mostly comes: We have prayed for Jered, the girls and strength for us. How much we have prayed can never be measured. God's grace and mercy has overwhelmed us. For Mother's day, I am praying for Jered to have a restful day; that all his vital signs would remain stable.

Dr. told us Jered would die in 2 days.

Sunday May 10, 1998

It's Mother's Day. My son is still alive, for this I am so grateful. Today's doppler reading showed Jered's brain pressures or spasms had stopped. I cried at the news. I was so happy. We had realized before the doctor can do anything – the spasms must stop. Jered was resting. Dr. Tenney decided to take him off the barbiturate (pentabarbital). They said he would slowly wake up in 2 or 3 days. They were hopeful he would. The nurses were not as hopeful because Jered has sustained a severe bleed and lack of blood to that area of the brain. We wait to see if Jered wakes up.

Monday May 11, 1998

Oscar witnessed Jered yawning at 11:10 pm. I had gone to bed. Oscar stayed with Jered again. About 3:00 am Oscar noticed that Jered was trying to open his eyes. By 5:00 Jered had his eyes open half way. He was opening and shutting his eyes when Oscar came to wake me and see for myself. I cried because I couldn't believe my eyes. Our son had opened his eyes. By the afternoon, he was attempting to move his head to the direction of the sound of voices. Maggie (his nurse) asked him to blink his eyes if he understood. He did. She asked him to grip her hand and he gave her a weak grip. Later Jered gripped dad's hand when he asked him to. In the evening Jered's nurse, Ashley, pulled a pointed object across the bottom of each foot. He responded by pulling away his feet. Oh happy day!!  

FMMJ: 5/6/98 - 5/8/98

From My Mothers Journal:

Wednesday May 6, 1998

The nurses have done everything they possibly can for Jered. His I.C.P.'s climbed to 40 and 41 and they kept going up even though they had given all the medications possible. Beth remembered a procedure that had not been used for 15 years. She called the doctor to let him know the situation and to approve the use of a barbiturate. The nurse, doctor and pharmacist had to figure how many grams to give Jered. 

 Finally, she just gave it to Jered's I.V. and his I.C.P.'s began to decrease. Beth had a hand in saving Jered's life. We are ever grateful for God's intervention and Beth's sharp mind.

------------------------------------------------------------------------------------------------------------

His I.C.P.'s went up and down as did his blood pressure. These were prayerful days and frightening days. The church had special prayer a week ago and in this night. Candace cried so hard. Daddy held her outside Jered's room. We thought this was the end. Our hearts were heavy. We wanted no visits or calls. We were told Jered would die today.

Thursday May 7, 1998

I.C.P.'s still doing the same. Up and down problems. Jered has problems in his lungs. Started antibiotics. Pulmonary Dr. Nelson talked with O.B. about overall health of Jered. His chances are 20 to 30 percent.

Friday May 8, 1998

We spent a lot of time in the chapel praying for Jered. Dr. Tenny told us his condition was worsening. Not only was his I.C.P.'s going up and down, but his blood pressure was climbing. His pneumonia was not better and he fought high fevers. 

If the brain swelling didn't take him than the pneumonia would. They moved his tubes out of his nose and put new tubes in his mouth for breathing and feeding. Oscar gets very little sleep. I have to rest because of the cancer and recover from surgery. I have to pace myself. Lani has been brave saying she's strong all this time.

Tonight is a band fund raiser for Jered at West.

FMMJ: May 4 to May 5, 1998

Monday May 4, 1998

Lungs showed fluid in lower left lung. Spasms continue on both sides. Either side of the brain have been spasming. Jered still in a coma. Dad cries a lot. We both do. Dad sleeps near Jered all night long. He won't leave the hospital at all. He refuses to go eat if people want to take him out. Lani came home. She's done with everything at college. They worked with her to get things done early.

Tuesday May 5, 1998

Jered's spasms and ICP's worsening. We sought a 2^nd opinion. The second neurosurgeon, Dr. Kelley, told us the same thing but more clearly. He told us no neurosurgeon would touch this because it is too deep in the brain and could do more harm or create problems with vision, speech and motor skills. We were desperate for Jered. We have prayed everyday, many times a day. The nurses are growing attached to Jered. They are gentle and kind. This is my birthday. I want Jered to have a good night. No high ICP's or blood pressures or heart rate.