Hold Tight!

I am sorry I have been away for so long.  Trying to heal and getting back to it has taken everything I have and then some. I am currently writing the story of my surgery and will post soon then I can get back to normal updates and news. Bare with me.  Thank you - Chel

PRE-OP Tests and Mini Update

The day is fast approaching and for me, it is a mixed blessing.  When you hurt and you have the opportunity to be pain free it is nothing short of a miracle.  However, the road there is a long difficult one. This is my Mama and trusty driver (who yells at the GPS lady affectionately known as Aunt B!)

             However, her driving skills end when faces with stearing a wheelchair....just sayin.

 I went in for my Pre-Op Tests and met some wonderful ladies.  I only got ones name but they were all very kind and patient with my “slow roll” as I call it. Gerry (she is on the left so many ways to spell it) battles Fibromyalgia and back pain yet she was so full of love and happiness.  She was amazing.  

 People say all the time “I hate to say I hurt knowing how bad you hurt.”  The thing is PAIN is PAIN and whoever is feeling it – to them its awful.  No ONE persons pain is more or less.  It is all relative.  I hate to see the ones I love hurt so I know it is horrible for them to watch me.  Some days, I move slow but ok.  Others I need help walking down a hall 3 steps.  It depends on many things.  What I did the day before, if I have slept all factors into my mobility.  This has been a long road and more to come.  So let’s catch up and then go from there.

Pre-Op Tests are really just base lines.  They did bloodwork, pregnancy test, chest x-ray and an EKG.  Very basic stuff.  I did have to get a Chemical Stress Test because I can’t walk on a treadmill long enough.  THAT was weird.  I am having Surgery at Baylor Ft Worth and the hospital is VERY nice. Gerry said she would see me before surgery and would be praying for me.  She was by far my favorite but had I spent more time with the others I am sure they would have been just as wonderful. I always worry after having THE NURSE FROM HELL in 2000.  She scared me and was so mean.  Would not come in to give me a drink said that’s what the IV was for – just mean.  I am terrified of staying alone all night to this day in a hospital because of her.  That is why Angie will be there when the kids can’t.  I need someone to watch over me.  However, my daughter will be a great guard dog. Hehehe  Love you Bug!

First my surgery was to be on March 13^th 2015.  It had been planned for 6 months.  I was driving back to Dallas to prep after my Big Hair Texas Edition of the Chel Show when I got a call from Mariah Dr. Sazy’s assistant.  She said because of the ice and snow they did not get a tool in to remove all my old hardware (I am fused at L1-2 in 2000 and L4-5 in 2009) did not arrive and they would have to move my surgery to Monday.  First, I was surprised then I got angry.  I have ordered jet engine parts from all over the world and had them the next day if not the day after.  Anyone in purchasing knows it CAN be done.  I told her this and she sighed and said “I guess I will have to be on the phone all day trying to find it.” I said “um, could you ….that would be great – grrrrrrr”.  So she said she would call me by 11 am.  The next day comes and goes and it is after 4 pm when I finally call.  She said phones have been out all day and no way can it happen.  I asked to talk to the doc.  She tells me she will let him know.  The next day I call back explaining I don’t live in Dallas AGAIN and that I have family trying to come in for this.  She said they can’t help it that the rep can not locate it.  Now….to me….if you KNOW 6 months out you need a tool you order it.  I think someone most likely her dropped the ball and just is making up excuses.  I even told her if someone screwed up fine but have the decency to admit it.  I would have more respect for her.  I still have not gotten to talk to the Doc and I am sure she is not telling him because she is worried about what I will say.  Sad.  You really NEED to be able to trust the doc and his staff when you are going through this massive of an event.  So now, surgery is scheduled for next Friday so I could get my family here.  March 20^th 2015 – wish me luck.

I have not slept hardly at all.  I dream horrible dreams and wake up yelling.  Last night Angie was with me and just patted me until I calmed down.  I don’t think she even woke up.  When she had her surgeries I came back to Dallas to watch over her.  I did not leave her side for 5 days except for an hour to go take 1 shower that was much needed. HA!  I am so blessed to have people around to help me in this and often think about those who do not have the support I have had.  I try to be there for as many as I can and always give them my number for the times they need to talk.  I figure there has to be a reason for all this crap.  I mean this is the most unfair thing that has ever happened to me and the most painful in so many ways.  I do my best to distract myself an keep going but it is so hard.  Even with all the help I have,.  So as always, if you need me message me on facebook or tmichellepool@gmail.com we can exchange numbers and I will help anyway I can.  Even if you just need to scream or cry.  Love to all.

FANTASTIC NEWS!

If you read the last post you noticed the said "no".  Gotta love Managed Care.  I was crushed and went into a deep dark depression I almost did not pull free of.  The thing most people don't understand is the pain brings you so far down.  Then add a bad day, bad news, a fight with someone you love and BAM you are done before you know it.  That was me and it was bad.  I could never end my life because of what it would do to the people who love me but I wanted to so badly.  I felt more lost and alone than I ever had in my life.  I just wanted it all to stop.

Thankfully, I had friends and family who pulled me out with their stories and kind words.  I use Facebook and this blog to try to reach people like me and update those who follow in hopes of helping someone else. So this is not for nothing.  I have met so many people with the same issues who are just now starting down that rocky road of uncaring doctors and worse insurance compaines.  People who need answers about a proceedure or test.  Trust me...I HAVE them.  You can call me Awesome  Mc Awesomesauce Answer Lady.  Yeah, that works.  ;-)  

As, I was pulling myself up for the 10 millionth time I got a call... my Mama said "hurry and call the doctor they are trying to get you and can't and call me back". I sighed and said "ok Mama, I will in a bit".  "No CALL THEM NOW".  "Yes Mam".  So, reluctantly I called, thinking oh I prob owe them money or something.  I got Casey and she said... "I felt so bad for you after we talked and I know how badly you needed this so I worked on it and you are approved".  "What, is this a joke or something because I really can't take this right now"?  "No, its no joke, we will pencil you in for Feb 20 but it is subject to change."  So just like that....I had a date!

Now things have changed but my official date is now March 13, 2015 for a new spine!!!!  I was going to have to wait til April or the end of March but this works perfect and no one else wanted this day.  Why you may ask?  Because it is Friday the 13th!  Which if you know me you get it...if not?  Well, I am all about weird and different and 13 is one of my 3 lucky numbers.  It's not a bad day for me it is a lucky one!

So, I will leave you with that.  More updates and awesome to come.  There is a ton left to my story and a lot to go through but I will keep going as long as it takes and after.  There are too many people like me out there.

Love to all!

Disappointment Abounds - Bare with me I can not sit very long to write so this may take days to accomplish.

This will be revised after I can take a break.  ***

Disappointment does not even cover it really.  Heartbroken is more like it. I guess you need some info to fill in the gaps and refresh some of the old since it has been so long since I updated.  I will try to get better about it.  I just only have depressing news and this was suppose to help not hurt.  First "Cocky Kansas" was just that, cocky.  All talk...NO WALK.  His name was Dr. John Smith (yeah, seriously parents out there....don't name your kid such boring names) and while the facility is amazing - he was not.  To be honest, he looked terrified of my MRI.  He said I had 14% over extension motion when normally a bad one is 3%.  Whatever that means.

Ortho 4 States

He told me he would have to fuse my whole spine from T5 to S1.  That is a whole heck of a lot of metal.  Titanium to be exact.  He would not even come talk to me after.  He sent his assistant in.  I call foul!  He said I would not be able to tie my own shoes etc. he said my life would be a big pile of "poop" (only he did not say poop - nice talk Doc).  

I was crushed.  I pretty much started to totally give up at that point.  Time went on and I had been in so much pain still fighting raising my meds.  I have an AMAZING Pain Management Doc who listens to me and tries to work with me not wanting to raise my meds and not just pumping me full of crap like my last Doc before my surgery. Her name is Dr. Regina E. Thurman .She has saved my life on more than one occasion.  I was starting to actually believe this was my life and not some horror flick on Lifetime.

My Mama though...she never gave up.  She found me an amazing Doc.  His name is Dr. Say-zee or Sa-zee (that's how you pronounce it but I have heard people say his name both ways) I went to Dallas after her trying to get me in for MONTHS.  

Dr. John A. Sazy  

I saw him in September.  I stayed in Dallas for about a month while I went through more of the same tests and treatments I have already been through.  He said the previous Doctors notes were awful and he could not tell what was wrong so he needed to play "Dick Tracy" and figure out what my issues were before he could say if I was someone he could help or not.  Keep in mind my medical file needs a rolling carry case it has so much in it.  He could not get the MRI and CT disk to run so he just had their horrible notes.  Below is a partial cage.

                                                             

 He went through everything and we started with Dr Ag-ger-wall (that's how you pronounce it)

Dr. Ved V Aggarwal

 I went for X-Rays first...

 Then to Aggarwal.  My Mama was there each time and made things so much better. 

 Usually my daughter goes.  She gets quite and education (she is going to be a nurse) by being my daughter.  I say she should get extra credit for having me as her mother.  We started with injections in L3.4 and 5. I noticed a difference but not a lot.  Currently as well as while I was there I could/can not feel the skin on my upper left thigh and the bottoms of my feet are in that stage before they fall asleep where they feel "thick" but I still feel my steps they just feel "wrong" and I worry I will lose more patches.

So, after those never blocks and steroid injections Rhizotomy 

 What is in me now....the pin marks are where they stuck me and if you zoom it you can see the needle in my spine.  Cool huh? Now, we at least knew where the problem was. I had to keep a diary of my pain and things I noticed after the proceedure. I did take photos for you as best I could anyway.  

I went back to Dr. Sazy and also helped him get the disk to run (Traveling Tech support , that's me - love all serve all)  I will try to add some shots of that later. This is basically it...

I have MANY PROBLEMS - He waved his hand over the screen and said "this, this is a mess" and began to go over each issue.

First, in looking at the MRI and CT Milo-gram he saw one of the screws from my first surgery is actually out of the spine all together and stuck in my muscle.  This is tearing and scaring and tearing and scaring with each moment (bending and reaching and twisting - so basically everything over and over) this is REALLY BAD.  So this needs removed.

Second, my Fusions are at L1-2 and L45 so everything in between above and below is crumbling.  They are all a mess.  I have DDD (Degenerative Disc Disease) which means all that is failing drastically and very quickly.  He feels it is amazing I am even walking.  I am in desperate need of a cage to contain the damage and stop the progression which will end with me in a wheel chair if something is not done soon.  Each moment I make even shifting on the couch causes grinding like you would not believe.  It is a grinding others can feel with their hand on  my back and hear.  This is seriously bad.  Sometimes it pops too and I drop to the ground.  Imagine someone digging in your shin bone with a spoon that sound. That feeling it close but not near as bad.

Third, I also have Spinal Stenosis  which is a narrowing of the spinal column.  Right now there are points that are almost closed completely.

What this boils down to is I am in BIG trouble in little China.  BAD.  I need this surgery.

He asked me what my expectations were.  I said "well, I would like to be able to walk without wanting to cry and more than 100 feet, go hiking with my family, ride my horses, just have my life back, I know I can never run or anything".  It was at this point he looked at me like he was really confused stopping me mid sentence and said "why not?"  It was then I began to cry.  I use to run all the time.  I loved running but I haven't run in years. The tears were flowing then and I said "really, run?"  He said "you are going to have to work really hard for me but yes, you will be able to run."  Then he said "now if you want to be a pain free 20 year old, I can't do that BUT if you want to be a relitavly pain free 40 year old....that I can do."  I could not believe it I said I know this is probably not ok but I don't care, (I grabbed him and hugged him) thank you, thank you so much." He smiled and said the surgery would be easy for me, I would be asleep it was him that would suffer 9-14 hours of surgery.  He said I needed a Nuclear Cardiology Stress Test to make sure my heart would hold out in such a long surgery and I could do it there or in Arkansas.  Once he had that he would schedule me for surgery before Christmas.  I could not believe it.  How wonderful to start a new year off FIXED, WELL, HAPPY and at peace.  I wanted to go home so badly...I had been there for such a long time.

My kids came to get me and bringme home.  I was so happy.  I called my family Dr. who is awful by the way, Northwest Family Medicine: Declerk Ryan MD. He actually fought me over the test and said it was unnecessary.  I called my old family Dr in Eureka...same thing  NO ONE would help me get a simple (ok so it was not simple but still) test.  I was beside myself but kept after him.  Finally he asked to talk to Dr. Sazy.  I could hear him in the next room arguing with him over why I needed it and not just an EKG and Chest X-Ray. Nearly a month later I got the test.

So....The Chemical Stress Test was weird. You actually felt like you were running. I will get back to that. First the put the IV in with dye then they took pictures of my heart resting. Then they hooked me to all this stuff and injected me again. Only this time it was with the adrenalin like stuff. I so glad Taylor was there. It was scary. It felt like someone reached in your chest and was pumping your heart by hand with big grabbing bursts. Your arms and legs tingle like when you run and you get all jello shaky. It was a yucky feeling. Then they take your vitals and give you another dye injection and you get a caffeine soda that is what helps your heart go back to normal. Only my heart decided it was not going to behave. So, I had to drink 2 drinks and it was better but not normal. I still feel shaky and yucky. My legs keep cramping. It sucks but I had the test now to get it to Dr. Sazy which you would think is simple right?  Oh no, not in a million years did I think it would take 2 weeks.  The Dr De-Jerk (his new name) and gang held it.  Why?  Who knows your guess is as good as mine.

At last, Dr Sazy has the info and I wait for a schedule.  My bags are pack and have been packed since I got home as I will spend many months recovering. He originally said 4 in Texas but after I begged he said if I worked hard...I could go home if everything was going well.  Then he told me "go buy some new tennis shoes"  I could not have been more terrified and happy at the same time.  I was so ready to be "BACK" doing what I love and being the person trapped inside a broken body.

Michelle FINALLY gets a break and has HOPE.  Only, it did not last.  The insurance denied the coverage for the surgery.  This is anywhere between 100 - 200 THOUSAND for this....maybe more.  My heart is officially broken.  I don't know if I will recover this time.  I just don't have enough fight left.  The pain I feel...there simply are not enough words.  I have so many things fighting against me yet I keep going.  Keep searching.  I am costing the insurance WAY more by staying this way and getting worse.  I am just not strong enough.  I have never felt so lost and hopeless. EVER.

Now, it's a good thing I type fast.  I have to go lay down I am actually crying as I write this but...it needed written.  Much more needs said but right now....there is simply nothing left.  Thank you for reading and your love, support, prayers and more.  So much for new tennis shoes, and hope.

Catch Up Time from summer...and time with Andrea Sumers

NOTE:  I started working on this a while back but did not publish becasue I needed to add the info to contact Andrea.  So this catch up" is a bit older.

Well it has been a while.  I fell into a deep deep dark funk that I was not sure I could pull out of.  If it weren't for my amazing friends both near and far I would not have made it out alive.  I do my very best to stay positive but there is only so much a girl can take.  I had a numb leg and little hope because the doc in Kansas (who I was so hopeful for) was scared.  Like all the rest.  He said let's try injections.  I have been down that road so many times I can't even tell you.  However, I thought maybe it would help my leg.  So, I went in and had them done. 2 days later I started to get feeling in odd spots on my leg. A week later I got my leg back so that's something.  I went back to see him and he said what I was looking at was a complete spinal fusion from T5 to S1 he said I would not be able to tie my own shoes. Hmmmm. I went home crying and crushed. Down the tube slide of eternal darkness I went.

I would wait until noon was home to cry or hide in the bathroom.  I lost all hope.  I just wanted it all to be over.  I was and am so tired of this pain that never goes away.  I gave in and raised my meds.  It helped a little.  Took the biting edge off but that is not a road I want to travel down.  That stuff is poison and I am killing myself with it.  My poor poor liver.  As time went on, I was really bad depressed and it took the love of my family and friends to pull me out YET AGAIN.  Keep in mind the leg up they gave me got me out of the hole but not out completely.  People can only do so much, no matter how much love they pour into you.  I was then feeling guilty because my family and friends had lives and problems too.  The last thing they needed was me.  My friends were having a festival and I realized it was further than I thought and I would not be able to go.  The drive would be just too much.  I really needed to be with these people.  They love me unconditionally and support me without limits.

I am going to say this only because it may help someone else.  I am not proud of it or do I condone it but it was a moment of weakness. I pulled out my gun (it was loaded).  I looked at it crying as I pulled it from the holster. I held it tight and turned it over in my hand as I sat in the darkness of the bathroom tub.  I thought about all my pain and all the pain I was causing others who worried about me. I started to lift it, slowly with shaking hands. My phone went off and scared me to death.  It was one of my friends who said they had a plan.  A plan so I could go and be taken care of and give my family a break.  They got me a driver. In that moment I flashed over the pain I would cause that would never end for my family and my friends.  I thought it was the most selfish thing I could ever do (I am so far form selfish its not funny, if I have it, its yours and I would cut off my arm to give it to someone who needed it more) that would leave them with a lifetime of misery and sorrow.  I thought of my kids and what lesson I would be teaching them. Just giving up when things got hard.  I may not have much to offer these days but if I can hold on in all this YOU CAN TOO!  I put the gun away and funny thing, I guess I was in a fog because I can't tell you were I put it to this day. I pulled up my big girl panties and went to see my friends.

It was a wonderful time under the stars with great music and a huge bonfire filled with laughter and singing and games.  I had a chair I was not allowed to carry.  I had my very own minions to help me.  It was nice.  Nice to know I would be safe and cared for and my family had a weekend of not helping me.  We all needed that more than I have words.  While I was there I met new people. One of these was Andrea Sumers.  She is an energy worker - healer - hypnotist and most of all a mom.  Someone like me in so many ways and yet so different in others.  She lives in Fayetteville which is not far from me.  We got to talking and she offered to help me.  I thought to myself....what have I got to lose.  I had seen someone kinda like her a few years ago who said due to the metal in my spine they could not help me.  Something to do with the flow of energy. Ok whatever.

Now you may think I am totally nuts here.  Energy worker - bah humbug.  When you are in as much pain as I am you will do ANYTHING.  Someone told me once, eat this dirt it is healing....I did.  Another told me drink this tea...I did. I have tried everything under the sun accept acupuncture.That was next.  She really helped me in so many ways.  We spent a really long time talking and her getting to know me and my issues and how I live vs how I wanted to live. She came up with a plan and we went for it.  She took a picture of my spine before.  She is a life saver and if you have issues you should check her out. 

She used these oils she specially researched for me and used her version of the Raindrop Technique. Raindrop Therapy combines aromatherapy, reflexology, and more all wrapped up in a healing and relaxing massage.  She used specific antimicrobial oils applied in a particular sequence which is believed will reduce the body’s inflammations and destroy any viral presence.  Andrea explained the original theory behind this is to heal problems of the spine but you could modify and incorporated into other ways to treat various conditions.

The oils are as follows:

• Thyme (Thymus vulgaris)
• Oregano (Origanum compactum)
• Wintergreen (Gaultheria procumbens)
• Cypress (Cupressus sempervirens)
• Peppermint (Mentha piperita)
• Basil (Ocimum basilicum)
• Marjoram (Origanum majorana)

Keep in mind these are also cooking herbs but these are specially cultivated and the concentration is super high.  No going down to the store for these kiddies.

This a demo video on youtube you might want to check it out or just look up Raindrop Therapy(there are several to look through):

https://www.youtube.com/watch?v=_e0dhb_lM_Q


She started with my feet and WOW.  It was amazing.  She used her nails and kinda dug into my feet a little.  It sounds horrible but it was pure bliss. Then she moved on to my back after spending a lot of time with my feet and differnt oils.  Once she started on my back I began to melt into the bed.  I could not even think.  I was just gone.  For someone in constant pain to not hurt even for a moment is just like nothing I can describe.  It is peace on the highest level.  She used this whispy motion with her hands and different oils (several in a series) then she rubbed little circles along my spine (it's what it felt like) and I was in heaven.


On top of the oils she poured her energy and prayers for healing into my broken back.  Little by little the pain began to ease.  I felt warmth spreading through the areas she touched but...the really wild part was, I touched her hands and they were cold yet when she touched me they were hot like you would not believe.  It really did help and after....I cried.  She is so wonderful.  I just wished I could see her every couple of days.  If you need her contact info it is as follows:

• (901) 351-4487
• asumers@gmail.com
• Fayetteville, AR

  She is on Facebook as Andrea Sumers

I hope this little tidbit of something else I tried will help you.  If you are in the North West Arkansas area contact her.  You will not be sorry.  I just wished I was closer to her because I would be in there every day.

Numb Is The Word

All was well.  Well, as well as it can be when your name is Michelle. I was grabbing my dinner in the kitchen and my leg was there....then it was gone.  Totally numb, AGAIN.  So for the past week I have been dealing with a numb leg.  Walking with crutches is NO FUN. My armpits hurt.  Yes, I know that is not how you use them but when you have had Carpel Tunnel surgery it makes it difficult to not.

I have done everything, ice, heat Epson salt soak (which are finally seeming to get me someplace.  I am so mad I can't do things but here is a lesson.  DO NOT COMPLAIN because yes, it can get worse. 

I have gotten a bit of feeling back but what it felt like was I had on 45 layers of clothes and socks.  A very thick feeling.  Not the yucky kind when it hurts to move after it has fallen asleep but that in between place.  I have had enough.  This is beyond not fair.  Yet, here we are again.  I went to get a CT and will post those soon but right now I just wanted to check in and let you know what's up.

Grrrrrrrrr!  Love Chel

Catch Up - Prt One

So, it has been a while.  Sorry.  I wanted to catch you up on s few things.  I have been on more pain than usual and not felt much like doing anything.  Much less sitting up and writing, even on a laptop.  So please, bare with me while I fill you in on part now...part later.  Important stuff first.

I have also been to MANY surgeons in Arkansas, none of which will take me due to the fact I have had many (3) spinal operations and by different people (not sure why THAT matters but it does) and the risk of paralysis is great.  My problem lies between two previous fusions and their not so happy Harrington Rods.  I worry there is nothing there because I can hear the grinding now, as can others around me.  It hurts so badly I just can't explain.  The closest I can come is take a cheese grater and drag it across the bone of your shin really hard.  Over and over.  Thats close anyway.

On Wednesday 2/5 I get a few painful but required tests.  They will knock me out a bit but still I am NOT looking forward to it.  I m getting a Milagram a CT with contrast and a Diskagram.  Then "Cool, Cocky Kansas" will see me and tell me my fate.  If he wont do it I can go to Ohio or Texas.  This is just closer so it would be easier.  I am scared but excited.  I know doing this could end my days walking but I can't walk much as it is...so why not.  At least it wont hurt anymore and that is the hardest part.  The part that is killing my soul.  I hate being this way and it needs to end one way or another.

Most people don't get pain so bad death seems like a better option.  Though (I wont lie) I think about it a lot.  I could never do it because it is the most selfish act anyone can accomplish.  The cruelty and the damage it does to the ones left behind is something they could never get over.  I know it is the "easy" way out and an end to all the pain but it is also an end to the good and believe it or not even the way I feel I have good moments.  Moments I hold onto with both hands.  Moments I look back on when everything else is so filled with pain my eyes blur from the tears.  It is my family, blood and chosen that keep me going when I have nothing left.  Even if you think there is no one who can care or feel it or even understand I am here to tell you I DO.  I am here.  If you ever need anyone to talk to.  Let me know.  as you can see I don't sleep much. Sadly.  Hang in there with me ok?  If I can't bail...neither can you!

Somewhere, there is a doctor who is brave enough to tackle me.  I am brave enough to try...where are you?  I make one hell of a study case. 

Chel