Children · Chronic pain · DISH Disease · Family · Lost · My Journey · Setbacks · Uncategorized

Thoughts

58bcdbde5138c0c786cb1952d95e35edToday My son and his girlfriend brought me to have a Lido-cane infusion at the hospital. I swear that stuff is like truth serum if they only used it on criminals things would go so much easier.  It takes about an hour for it to go into my system and one of the nurses has to sit with you the whole time.I really love the nurses there. They care and it is a one on one counseling session for a whole hour.   I completely lost it while i was laying there in that sterile hospital bed. I started to sob like i have not done in so long.  I am having such a hard time accepting that eventually I will be paralyzed. I try never to say it or even to think about it for that matter but it has been weighed on my mind. I am so fucking scared.   They had my 19-year-old son come in and hold my hand to calm me down and we cried together.    He reminded me that he has seen me a lot worse that i was today and that even if I am paralyzed I will find a way to succeed.  At one point he told me what an amazing person I am because of how I always help other people and now it is time to let other people help me.  He said, ” Mom people alway praise how great my brother, sister and I am.” ” We did not get like this on our own. You did it.  You raised us to be this way and it takes one hell of a strong women to go thru what you have been thru and still have amazing kids.”       He kept wiping my tears off my cheeks.  In my mind I was thinking how I was the luckiest mother on the planet to have this exceptional child. What did I do to deserve these kick ass kids.  Don’t get me wrong they push my buttons sometimes but I would not change anything about them.    My son made everything all better. I wish that it could have been my mom sitting there holding my hand telling me that everything will be alright. In my heart I know that it will be but I just wish my Nana was still alive so she could make me a cup of tea and call me her angel pie once more.  

I have so many emotions running through my head.  When we got home from the hospital I took a nap then my best friend came to see me. We made the dreaded list that I have been putting off forever. At 40 years old who wants to have to go see a lawyer about writing a will, not me.  I need to go talk to my foster parents about some of my financial concerns and fix my medical proxy again.   I remember 11 years ago when they first explained this disease to me I could not wrap my head around it so I had to make my best friend my medical proxy. There is no way I could ask my husband to bear the burden of pulling the plug. I do not even think that he would. He loves me so much that he would keep\ me alive forever. I just fucking hate this bone disease. To know that is going to fuse all my joints together slowly but surly. It is happening so rapidly in my spine to me having a spine operation is like getting your oil changed in your car.  I never really tell anyone how I feel, You who read this are the only ones that know.

This weekend we are taking the kids to the mountains to our little getaway place.  I want to move there.  I am going to ride my 4-wheeler to my favorite spot and enjoy the silence.  Take some fabulous photos.  I am going to bust out my new chainsaw and cut up wood just because I can.  I love that thing. My neighbor up there calls me skidder Bitch. I think it is a riot.  Then if I am still stressed out I am going to get out my rifle that i bought myself that has barely any kick back and do some target practice.  Most of all I am going to enjoy the time with my family and just be.  This will be the first time in a year that my 22-year-old step son has been up to our place.  He has six months clean and sober and I am so fucking proud of him.  I love that kid to the moon and back.   My daughter is going to be riding her new dirt bike she got for Christmas for the first time I am wicked excited for that. I can’t wait to ride it either.  We are also taking my friend’s son who is 14. He is having some problems in and out of school. I am hoping to talk to him so i can find out what is going on before he takes the road that I traveled when I was his age.  I love that we disconnect from the world when we are there since there is no phone service or internet. It is great for the kids!!!1525638_10151883404020848_1666749687_n

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Chronic pain · DISH Disease · Lost · My Journey · Setbacks · Surgery · Uncategorized

Unsure

I’m not sure how I’m going to do it yet but I am you going to do it. I will get it done. Not sure how much more I can handle with out falling apart . I think I’m about to break. I’m about to explode inside. I just need to escape. Not that escaping fixes anything but I just feel like I need time to breathe. So I knew that the news wasn’t going to be good news but it sure wasn’t what I expected. I wasn’t expecting that I needed my neck operated on again. I’ll admit that I’m scared.  Scared of the unknown.  Scared that I won’t continue to be healthy and heal again. But I know that I’m strong so I’ll bounce back. What truly scares me the most is not being able to read and write after my surgery. The last surgery I had it took 3 weeks for me to be able to read and write again .So this time I imagine it will be even longer and I hate being not being able to read and write. It’s the only form of communication I have when I can’t talk . Having that taken away from me, it feels like I lose my power. Maybe I’ll have to take up sign language. So now knowing that I need my neck operated on top of the fact that the next step down from that will be my thoracic spine because that has bone spurs growing into my spinal cord. He also told me that my lower spine has lost all its disc height and there’s no more fluid left. That it’s starting to fuse together on its own there’s nothing they can do about it expect give me some steroid shots for the pain which that’s useless. So I’ll just continue to exercise and do ab workouts to strengthen my muscles so that way all the pressure is not on my bones. It is so hard to stay positive when all of this stress is weighing down on my mind.  Which makes the simplest  of simplest tasks that much more difficult. My brain is constantly going a hundred miles an hour . I can’t even focus. Then all the stress it puts on my family. What are they going through? What’s in their minds. My husband has a hard time communicating on how he  feels which to me is a  problem because I really want to know what he thinks about it. Obviously I’m going to go into my next surgery more prepared. Each time I have a surgery I’m more prepared than I was the last  time . I have a team of people in place that are amazing. With them I  put together my rehab, visiting nurses, my plans, my living will, (in case something happens).  I have a medical proxy  and I have a pain team in place. At this point I’m stronger than I’ve ever been going into an operation. I feel the healthiest I’ve ever been. My recovery time should be  pretty quick. I’m just so scared of the unknown. I’m trying not to focus on the what ifs. How do you explain to your friends what’s going on in your mind. You just can’t. I don’t want to hear the  I’m Sorry’s or I feel so bad for you. I don’t want people to Pity Me. I just want to surround myself with positive outgoing people. People who want to strive to do the best they can do when all the odds are stacked against them.

And me being the nut that I am, I asked a neurosurgeon if I can run a marathon. He told me no but I can do 2 to four mile runs a week so I’ll take that. I guess I’m just going to have to live my life like I’m not having the surgery . I’m going to keep planning things like I have a healthy body. I have such a hard time accepting that I’m not normal but I don’t have a normal body. I keep pushing myself and pushing myself to the limits. I’m exhausted every day.  Every day I wake up in excruciating pain  and I don’t think anyone truly understands what it’s like to be me. It’s so hard trying to take care of my 3 kids and keep my marriage going on top of  focusing on myself.  Trying to just be happy. I just feel so lost right now

Chronic pain · Isagenix · Lost · My Journey · Setbacks · Spine Surgery · Surgery · Uncategorized

Setbacks

May 15 2017

 Setbacks, we all have them and i just had a huge one.  It’s so frustrating. I have a goal . I want to become a finalist in something called the isabody challenge. I’ve been working so hard towards it for the last for months and it is only two weeks away.It’s been so difficult.

When you’ve been down and out for so long  your body starts to shut down. I only ate once a day for a long time. Sometimes I would go all day without eating . Now I am trying  to eat 6 times a day.  It is so tough and meal prepping sucks.  It kills my back to stand in one spot for long periods of time to cook all that food for the week but I have to find a solution to this issue .  I been  working on me as a whole. Getting healthier, working out everyday, meeting new people,  trying to be a better version of  myself while still taking care of my family and animals. Managing everything is crazy and then my setback came in the form of my MRI results.

 I can always tell when somethings wrong with my spine. I can tell because my perception of things is off. My body doesn’t work right, its the little things.  2 weeks ago I got into 2  car accidents in one day. They weren’t bad car accident I missed judged pulling into the parking lot by like an inch and then a woman stopped short in front of me as I was pulling out of a side road .She jammed on her brakes to let another car out and I rear ended her. So I knew something was hitting my spinal cord because my reaction time was a few seconds off. But a few seconds could cost me my life .

I didn’t want to go get my MRI results because I’ve been doing so well lately. Its like I finally got a chance of what it feels like to have a healthy lifestyle. A taste of the good.   I did not want to ruin that by having another spine operation. So I waited till after I went to strong camp even though I knew that  results were in. I’m trying with all my might not to let it get me down. At the end of the day its in the back of my mind weighing on my soul because I know I’m going to need another operation.  In my heart I feel like I’m healthy so the recovery shouldn’t be too bad but I know what it entails. I know that now when I wake up I’m not going to be able to read or write  and it is going to take longer than last time to come back.  It scares the ever living fuck out of me.  I just keep pushing the fear out of the way!

I sat in the parking lot of the doctors office with big fat tears rolling down my face as I read the MRI results. My lower back is messed up ,which I already know that and not a big deal. I  have a tear in my disc, spinal stenosis, , disc  protrusion, some narrowing ,and some other stuff. No big deal everybody has something going on in the lower back. The thoracic spine which I just had an MRI in 2016 and 2015 now states T5-6  disc Protruding, T6-7 mild spinal cord impact with some protrusion. Okay no big deal but here is where it gets tricky, T 11-12 I have already had operated on now went from mild to moderate spinal cord compression with more protruding and bone spurs growing.  The cervical spine they could not see because I have so much metal in there already.  I will need another test for that. So I find out more results next week when I go to the neurosurgeon. I’m trying not to let it bother me.  Just paste on the fake smile . I’m just going to keep on keeping on.

Fitness · My Journey · Surgery · Uncategorized

My one year Anniversary

I wrote this on May 17 2017.

Today is my one year anniversary from my last Spine surgery. I thought it was going to be tomorrow but it’s not. I had a t7_8 mammoplasty something and a right T 7-8 something something. Hahaha it is all a foreign language to me.  They put some micro titanium plates down my spine and  cut out the nerves in my middle back . All I know is I woke up with 30-plus staples going down my back and he said it would take a year to heal. Exactly a year before that I had a cervical surgery and a shoulder surgery a month before.  Each time I wake up from surgery it takes me about 2 weeks to get my reading and writing back it’s crazy. This morning I went to the gym with my friend Blanche. It  was  an awesome way to start the day. What a  killer workout we had .   Today when I took the picture after we were done I just could not believe it’s actually me. I’m still in shock. I’m still in awe. I’m doing better than I ever thought I would. Although I know right now I have some more stuff I need done. I’m not going to worry about it . I’m just going to Keep On Keeping On.

 

 

Birthday · Chronic pain · Family · Love · My Journey · Uncategorized

My 40 Birthday

Today is my birthday and I’m turning 40.  40 is the new 20. A year ago if you asked me how I felt about turning 40 I would have said sad, down, and depressed One more year goes by that I’m full pain.This year I feel healthy, yes the pain is still there, but its not all that I focus on anymore. I’m focusing on creating a new me. Its like I’ve become a whole new person. Every time I look in the mirror I see someone new staring back at me. I sometimes can’t believe that it is really me. I’ve lost 70 pounds .I’ve gained some muscle mass and I look healthy. I know its been hard on my family having the new me because now I’m full of energy. Where before I lived my life basically on the couch. I feel like my brain was in a fog and I was just getting by day to day. I was not really living. When I think back I realized how much I do not remember. I don’t remember a lot of my daughter growing up even though she lived in the same house. She’s 14 now and I don’t remember a lot of things. I have the pictures to prove that I was there. That I did the best that I could but its sad how the pain blocked on my memories.  So this year I’m going to make new memories with her and they will be in printed on my brain for the rest of my life. I’m going to make sure of that. Its been a rough journey. I’ve lost a lot of friends over the last year but then again where they really friends or just acquaintances. My old friends are still they’re the ones I’ve had for like 20 plus years just the new ones I gained while i was sick have started to do dwindle off.  We are just not that close anymore. Its okay they are just not meant to be in my new life.

So Happy Birthday to me. I am going to treat myself to a spa day. I deserve that.

“I’m on the hunt for who I’ve not yet become”

Chronic pain · Lost · My Journey · Surgery · Uncategorized

Suffering

I just went to counseling and we were talking about suffering. Why is it that I don’t think I deserve a good life  and when good things  happen to me why do I feel like I need to suffer. Why do I feel like I don’t deserve good things. Why am I not worthy. These are just some of the questions that run through my head on a daily basis. Probably most of it stems back from when I was a child but shit I don’t have time to go back that far. I’ll be in counseling for the rest of my life.  I should start with the recent years right? What the hell.  I think it’s because every time I start something that’s good in my life I get sick or I need an operation. Operations where something could go wrong and they always do. If there was side effect to get I would get it. Every time I started something I would have an accident and be forced to stop it. So after years of this happening it was a common occurrence and it became ingrained in my brain that I just have to suffer for some reason. Well this is not true!  I do not deserve to suffer . I do not deserve the things that have happened to me. I deserve to live a happy life.To be healthy and whole. I deserve to feel alive to know that when I start something that I can finish it without having any negative thoughts. In order to do this I need to change my mindset and changing one’s mind-set is a hard thing. After being sick for so long all you think about is sickness. Now I don’t think of myself as sick. I think of myself as healthy. I deserve to have good things happen in my life. This suffering has come to an end.

Uncategorized

Sleepless Nights.

Since 2005 I don’t remember ever sleeping through the night. Whether I am waking up from pain or just to go to the bathroom my sleep always seems to be interrupted. Usually the most sleep I get is 3 or 4 hours and one’s body needs 7 to 8 in order regenerate and heal from the day before. I also suffer from night terror.  Just in case you are not familiar with click on the term below.. I also wake up crying or screaming.  My husband usually has to wake me up when I fall asleep . Lately I have been waking up to the feeling like I am being electrocuted in my back . It is kind of like someone is taking a taser to my body. My doctors think it is muscle spasms but I think it is my nerves trying to regrow.  I had them all cut out of my thoracic spine in May of 2016.  Nothing works for me to get a peaceful nights rest. Night Terror

Car rides · Chronic pain · Control · Dad · Lost · My Journey · Strongcamp · Uncategorized · Woods

Control

 

 When you are in chronic pain it is hard to give up control.You need to control everything around you because you’re trying to control the pain. You try to cope the best way you knows how. You’re trying to distract yourself. You’re trying to take away the pain. YOU ARE IN FIGHT OR FLIGHT MODE . Constantly struggling with a reality that nobody sees.  For a long time I associated driving with excruciating pain .  I get car sick,  after 10 minutes in the car my whole body stiffens up and my back feels like it’s on fire.  It makes me want to rip my head off. For a long time I had to lay down in the back seat and I could never sit upright. I would put off going on long trips and I sacrificed a lot of things for over 10 years.  I would always drive if we went anywhere because I would hope to distract myself from the pain.

This past weekend I went away with an amazing group of women to StrongCamp New England. We decided it was a good idea  to drive together and I was not the driver. This was probably one of the hardest things for me to do, giving up the control. Immediately my brain associates this car ride with pain so it puts me in a funky mood. The amazing woman who drove us drives on the slow side which drove me crazy. But I’m learning to be a better person so once again have to learn to keep my mouth shut and give up that control. She is a great driver and has never had  a speeding ticket. I’m so proud of her she got us there safe and sound in the pouring rain. I drive 90mph everywhere I go.  By the time we got to the hotel I was miserable. Even though I sat in the front seat I was car sick, had a migraine and my back was screaming out in pain. I knew no amount of medication was going to take my pain away. I would just  have to suck it up and deal. Try my best not to be a bitch but once my body reaches that pain mode my brain start spinning out of control.  After an hour or so I just dropped it(my pain level) myself with meeting the rest of our team, decompressing, and things weren’t as bad. 

The ride home was a different story… my body was wrecked from a hard long weekend at strong camp. My mind was clear but full of pain, emotional and physical.  I’m all about getting from point A to B the quickest, fastest and  most direct route possible.  Of course there was a mishap with the GPS.  I knew the GPS was wrong on which way to go because I’m like a human compass.   When you have three other women and the GPS telling you you’re wrong you begin to second-guess yourself.   Let me back up a bit, I’m only like a human compass because of my  father.  When I was little he would take us girls out into the woods and leave us there then tell us to find our way home. As a young child it was scary as fuck. Especially knowing that I was responsible for my two younger sisters. Later on in life I learned that he was nearby watching but I never knew that back then. Twice at the age of 6 I got lost in the woods with my little sister in tow. One of the times she fell and broke her arm. I’m not sure how I found my way back. I think it was a pure miracle but I remember her crying the whole way and  I remember thinking Dads going to be really mad and beat me for this one. So in my mind as we’re getting lost on the highway all this is running through my head making my headache 10 times as i’m trying not to puke. My body is screaming out in pain and I am going to pee my pants at any moment. I’m trying so hard not to be a total bitch. Giving up control of a situation has been one of the hardest things I have ever learned how to do. I’m not sure anyone else in that car realized my internal struggle I don’t think they realize how deep it goes. I am not even sure I think I realize how deep it goes. Us taking the wrong Highway put another 45 minutes on the drive and my Everlasting pain which makes me go crazy and sets off me having anxiety attack. My anxiety attacks gets so bad that I want to jump out of the car there is no medicine… GIVING UP CONTROL IS A HARD THING TO DO …. IT IS A WORK IN PROGRESS BUT I AM DOING IT!

Family · Love · Mother's Day · My Journey · Strongcamp · Surgery · Uncategorized

Strongcamp NewEngland

STRONG…. What does that word mean to me? This was a question that I was asked over the weekend by an amazing talented women named Stacie Venagro.    When I look at what I wrote down at the time I was asked this question I feel like my definition of what strong means has changed….  I first wrote,  STRONG was the last 35 years of my life getting here to this very moment sitting on this floor answering this question.  STRONG means getting thru and over coming anything put in my path.  When the odds are stacked against me that I can come out on top. Strong is raising my kids with great values. To be kind, caring, respectful and to stand up for others when they are week.  My whole life has been a struggle. I am sick and tired of being sick and tired.  STRONG MEANS- giving my strength to others when they need it.  Never give up. There is always a way and a solution, you just have to find it.  Find the positive in every situation. My cup is always half full.  Life is mind over matter…   Before today this was my definition of strong.  After some deep down soul searching with some incredible inspirational women I realized that my definition of strong may have changed.

STRONG means being vulnerable is okay… It is okay to let others see you cry and to show your emotions. That I can be weak sometimes.  Lean on me….. And in the words of Bill Withers ,

“Sometimes in our lives
We all have pain, we all have sorrow.
But if we are wise,
We know that there’s always tomorrow.

Lean on me when you’re not strong
I’ll be your friend, I’ll help you carry on
For it won’t be long
‘Til I’m gonna need somebody to lean on.

Please swallow your pride
If I have things you need to borrow
For no one can fill those of your needs
That you won’t let show.

You just call on me, brother, when you need a hand
We all need somebody to lean on.
I just might have a problem that you’ll understand,
We all need somebody to lean on.”

It was very difficult for me to open up and trust a strange group of women.  It was an awkward experience for me because I do not trust others. As uncomfortable as it was, it felt so rewarding. Uplifting and empowering.   I let my brick wall down and the positive energy of the universe came flooding in, I felt like I was on top of the world. This is what every women should feel like.. We all need our tribe, some one to lean on.37101350fc23c6e1d8e21d88eca86392

Addiction · Chronic pain · Family · Fitness · Love · Uncategorized

Strongcamp

110533_20130813_210331_black.squareI took you with me little bird!!! Your wings were clipped to soon. Don’t worry I carried on my back and held on to you with all my might.  I thought of you every step of the way. You smile, your laughter your tears your never ending pain don’t worry little bird I have your back. I did not let you down my friend.   I did what you could not but would have.. Don’t worry I will make him proud. I have your back little bird, I will take away his frown. I will make sure he knows how hard you fought but that you had to go.  Just know you are always with me little bird I will never let you down.

I LOVE YOU JESS!!!!