Body Image · Chronic pain · DISH Disease · My Journey · Pain · Spine Surgery · Surgery

Body Image

As I took a picture this morning to send to my friend , she wanted to see how my spray tan came out, I saw a how flawed my body was. I was a spray tan virgin until I had my cherry popped yesterdayūüėāūüėāūüėā.  As you can imagine from having all the surgeries that I’ve had I’m full of scars and my body is disproportionate. When you look at me my left side of my body it is higher than the right .It bothers me because it makes one of my breasts hang lower than the other. In the scheme of things it really doesn’t matter because I can still walk. As a woman mentally sometimes it fucks with my head. It’s because I am missing ribs on the right side and I have a titanium one this makes me off kilter. Everytime I look in the mirror I focus on that  horrible year in my life of the operations ,rehabs, suffering and infections. I need to make new memories which I’m trying to do. It’s not like when I see the stretch marks on my belly and I think wow I have two beautiful children and I’m blessed. And although my back is scarred from one end to the other I don’t see it that often. I think it’s ugly but I’m starting to replace it with beautiful muscles. Body Images something that I struggle with because it was ingrained in my mind as a child from my father that you had to be perfect and I was just never good enough. Today I’m just blessed I can walk and I’m thankful for the small things in life but this morning when I took that picture it just hit me a little hard. I sometimes wonder what other women have for body image issues.  do they see what I see when they look in the mirror? 

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Daughter · DISH Disease · Family · Fitness · Husband · Love · Muscle Spasms · My Journey · Pain · Setbacks · Spine Surgery · Surgery · Uncategorized

Panic

d972fc0bad532f6bf7634c05cc784d1dLast night my daughter and I are sitting in the car after the gym. ¬†I asked her if I could post on Facebook that we just had a great workout. As I turned to look at her all the sudden I had a muscle spasm in my neck. I usually get them when I yawn and they last for about 10 seconds. I can’t breathe and it is weird as fuck. This all ¬†started ¬†happening after I had one of my spine surgery spine surgery 2 years ago. It’s usually no big deal. Last night was horrendous.¬† My face muscles froze up as well as neck ¬†my chest. I couldn’t breathe. I couldn’t talk and it seemed like it lasted forever. The tears started rolling down my eyes. At this point I don’t know what to do so I panicked.¬†I grabbed onto my daughters arm and squeeze tight with all my might. She started to panic and asked me if she should call Dad. I couldn’t even respond. I felt hopeless and helpless. I never want my daughter to feel that way. It probably only lasted for 30 seconds but it seemed like hours in my mind. When it stopped it felt like I’ve been underwater for five minutes because I was gasping for air. My neck and face hurt so bad it felt like someone choked me out. I felt on fire. ¬†I had to sit in the car for a few minutes and regroup. ¬†I didn’t even want to drive I was scared to turn on the car. What if I happens again when I’m driving home down the road with my daughter and I killed someone, us. The doctors told me that things like this we’re going to start happening to me and I didn’t want to believe them. Well it’s happening and it’s scaring the fuck out of me. I made it home safe and sound. I took a deep breath of fresh air when I pulled into the driveway. I sent my daughter into our house to get my husband and then I broke down in the car. ¬†I sobbed¬†my eyes out. ¬† I’m scared. I’m scared of the unknown. I’m scared of what will happen. Today as I sit here typing this, my throat hurts. It’s so sore. It hurt all morning as I talked to people. I just want to go crawl in my bed and hide. But instead I got up. I went to the gym and now I’m going to get some work done. No one really knows what goes on with me on a daily basis. I hide it all. ¬†I even hide a lot from my husband. Does he see the silent tears that roll down my face as we lay there in the darkness at night? ¬†Does he hear my plea for help from a highpower? I paste a fake smile on and I act like there’s nothing wrong. When really inside I’m dying a little each day. I’m trying to make the best out of it. Trying not to let anyone see the broken me. At the same time I’m trying to fix myself it’s so confusing. ¬†Brick by brick I am trying to build myself back up. I am always in fight or flight mode.¬†

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.

 

 

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.

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

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.

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