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!!!!

Fitness · Uncategorized

Progression

Nervous!  No not me, Never. Well maybe a little. I have never been to A strong camp for a fitness magazine before and this weekend is approaching so fast. I have never been this healthy before. This Month of May is holding so many first for me.  7 more days until I turn 40, 14 more days until its my one year anniversary from my last spine surgery.  It is the one year anniversary where I decided that I was sick and tired of being sick and tired.   Here I am thinking am I prepared enough for the weekend to compete against myself.  You know deep down inside each women there will be competing with each other, while cheering one another on!!  It is all about self growth and empowering one another .  Granted I am going with a super power of women.  The toughest part is that you will learn where you are the weakest.  Who want to be told they are weak, let alone have to work on it with a bunch of other women… I hate being weak.. But in order to grow you must work on ones whole self and that is  what I am going to do while we will be photographed and filmed by the man who does the Playboy centerfolds… OKAY yeah now if that does not put you on the spot nothing will.   I know myself, I am going to rock the fuck out of this weekend.  I will push myself like I have never done before.  I will succeed.  Failure is not an option. And if I do fail , I will just pick myself up and do it again until I get it right.

Chronic pain · DISH Disease · Family · Surgery · Uncategorized

Road Blocks

Yesterday I sat thru a 3 hour long MRI by the time I was done I was in so much pain.  Laying in the same position sucked ass.   It was for my whole spine and I honestly do not even want to know what the results are.  I have been feeling amazing for the last 6 months and I feel like the higher powers that be are teasing me.  I know that I am going to need another operation I can honestly feel that something is off.   My perception of things is off it is like there is someone back there pulling strings with my spinal cord.  How do I tell my family that I am worried. I don’t…  I sit here and suffer in silence alone because this will be my 11 spine surgery.   After my last spine surgery in May 2016 I decided that I was sick and tired of being sick and tired.  So I started to exercise slowly .  Each and everyday I dragged my self out of the house to walk.  Then I changes my eating habits boy what an incredible difference that made.  I joined this program with an accountability group and found an amazing group of women, I love it!!! I went from 210 ponds to 145 in 9 months… I have a ton more energy and my pain level cut down as well…. But

On the outside I look fine. Do I look sick.  No I do not.  But what exactly does sick look like. People are so judgmental too.  It’s like I need to walk around with a big sign that says hey “I am fucked up!”    My friends do not understand and sometimes I do not have the patience to explain anything to them anymore.   I have told them all time and time again that I have a disease that there is no cure for. They just do not get it.  When I have to cancel plans at the last minute because I am in pain and I know that doing what ever we are going to be doing is going to wreck me they get pissed off and take it personally.  Or if I am having a rough day and they are negative I do not want to hang out with them because I need positive people in my life.  I need people to lift me up not bring me down. I can bring myself down all by myself. I have lost a ton of friends over the years but then again were they really true friends?  I guess not.

When it rains out my whole entire body aches and I want to stay in bed.  It takes every ounce of will power that I have to get out. I AM MY OWN CHEERING SQUAD…   I ache the whole day everyday.  No one knows the struggles I go thru on a daily basis but then again I do not know their struggles either.   To push thru the days is all mind over matter because most of the medicines do not work any more and my brain is so much more powerful.  I have been doing so well and now the higher powers gave me a giant ROADBLOCK.  That is okay. I can get passed it.  I have before and I just need to keep remembering all that I have overcome.

Uncategorized

Overwhelm

I do not react well to the feeling of overwhelm. My mind stats to race and I get flustered. A million things start racing around inside of my head and I can not organize them. Its crazy and then I react negatively to those around me.  It is so not their fault and  is not good .  I feel over whelmed a lot. More so now that I am older and getting healthier.   I am basically the only one who take care of our family problems and I could use a little more help and support some time.  My husband does the financial part but i do the rest. I need to learn how to breath and re focus on the positive. When I get overwhelmed I try to fix the things I can immediately and then I will prioritize the importance of the stuff.   I often tell my family members that I need a minute but that is so not fair to them but it is the only way I can re focus .  Often times i will actually leave the house to calm down. Sometimes I procrastinate on the big things but never on the little things.  I use to wait till the last minute to do stuff but now I  am getting better with that .

Chronic pain · Fecal Tranpant · IBT therapy · Surgery · Trigger Point · Uncategorized

The Waiting Game

 

As I sit here waiting for the nurse to come and reassess my situation I find myself contemplating my up coming operations.  I feel like my little fighting solders have left the building.  The last 11 years have been nothing but battles with doctors and their nurses. I am climbing this mountain with a ton of dark caves.  Finding the best care for ones self is  trying ,I am not sure how older people do it.  Currently I am waiting for 3 surgery dates.  I have had so many surgeries on my back they have caused  a trigger point  on the end of a cut off rib.  Please do not let my enemies know that with one touch of it I throw up and drop to the ground, my bad ass bitch status will be out the window.  In my case the  trigger point is basically my  nerves that have grown into one big ball and I picture it like heart worm on a dog.  I really do not want another surgery but it is fucking up my muscles so bad by not firing right. Irritation from my doctor does not even describe how I feel, I just want a date that way I can schedule my life around it.   Summer is almost upon us and I am no way in hell having surgery in the good months.  Granted it does make recovery time a lot faster but this is the time I get my solace from my mountain retreat. As if I do not already have enough decisions with 3 kids and a husband.

The second operation is just IBT Therapy. The doctor is all for it  but one must see the psychiatrist at the hospital to asses your situation. This battle has been going on for over a year.  The brain doctor feels like it would just be one more disappointment for me in my life. He and I have met twice in the last year and both times I have had so much stress on my plate. He feels like in order for this to be done that I need a clean one. Knowing me that will never happen. I think the therapy is not going to be a long term solution just a short one but long enough so that I can get on my feet.  I would be happy with 6 months, that is a enough time for me to get strong enough to do regular exercise.   My doctor thinks this could work for my muscle spasms and pain. He is going to add several medicines to the pump instead of just one.  I would love to have an upper torso that is not one big charlie horse.

Apparently I like my plate over flowing so why not give me bronchitis again. Dear higher powers that be, Pneumonia and pleurisy were not enough for you. I have had some form of a lung problem since last summer.  while trying to figure out the lung issue they found out I have narcolepsy. Once again  I am on antibiotics for 45 days.  Ladies we all know what comes with antibiotics, a raging yeast infection. The kind that makes it swollen to ones knees, now only if my husbands dick was this big. When I went in to see my favorite doctor, the gynecologist, last week she also informed me that I have a bacterial infection and some growths inside. She is not sure what the growths are but guess what she is going to operate to take them out.  We need to test that shit for cancer.  My body loves to get C-Diff( I don’t wish this infection on my worst enemies) so I can not take any more antibiotics for bacterial infection. Did I mention this is the fastest way ever to loose weight. Shitting your brains out is just so much fun. When the nurse from her office call to inform me of the BV  I had a little fight with her because she happened to make the comment, ” Well since you are refusing to take antibiotics for the infection  the doctor wants you to use boric acid.”  Immediately I turned into something even the devil will not fuck with. I replied, ” I am not refusing anything, but I just had a shit transplant so I am not supposed to take them!”   I am pretty sure she did not have a clue what I was talking about because she said what about three times. Then I used the correct medical term,  “Fecal Transplant because I was getting C-diff a lot and it was not leaving my body”.   At this point in the conversation there was probably steam coming out of my ears because she repeated her self a few more times.  Then she informs me that I have to find a Pharmacy that makes the boric acid compound.  I am like what????  “That is your job.”   She replied in a bitch tone. ” You need to call your regular pharmacy and find out if and where they make compounds!”   My mind is screaming, ” Listen you dumb fucking bitch I already know that my pharmacy does not make compounds and since you are a pussy doctor ,who obviously did not even look at my file before you called me, you should already know who makes compounds since you are dealing with pregnant women all the time and that i just had a shit transplant. Do you know what it is like to now smell like your husbands shit after smelling like your own for forty fucking years. Weird and it creeps me the fuck out!!!”      I did restrained my swearing brain, which for me at this point in y life is nothing short of a miracle and told her where to call in the prescription.  We hung up and its been four days and the bitch did not call it in because I called the pharmacy .  Instead of dealing with them again I ordered my own capsules online. PROBLEM SOLVED.   Well I may have called practice this morning and put in a complaint.

One last grip then I am done with my rambling for the day.  I think I have C-diff again so I am going for testing tomorrow.  Won’t my husband be so excited to learn that he can be my shit donor again. Hahahahaha, jokes one me