A New Dawn…A New Day

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My journey to answers started years ago, but until recently it brought on a whole new meaning. I have listened to so much negativity throughout the years about my health and my sanity and it has taken its toll on me. The decision to pay for specialized testing through Igenex labs was a tough decision for me. All my fears surfaced on whether or not it was all in my head or the real thing. Years of people planting the seeds of doubt got to me. I knew deep down though I was not crazy; that what was happening to me was real, all of it was real. 


So now I take you through the last few days that has forever changed my life.

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Wednesday morning my friend Jenna and I set out to see the LLMD doctor that I have been waiting months to see and and a long lost friend. We talked for hours about all that had been happening to me and how people have treated me along the way. I was filled with anxiety. I had so many emotions running through my body it is almost indescribable.  I was scared of what was coming and the anxiety just built up till we arrived. I had my moments of doubt on whether or not this was going to give me the answers that I was searching for and Jenna tried her best to ease my mind but I think she was just as anxious as I was.

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We finally made into town and arrived at the hotel. My long lost friend Kim came out to meet us. I also met Kim’s friend Vee for the first time. Kim has been in my life for a long time but we lost touch after high school when life took us in different directions. Just a few months ago we found each other again on Facebook. This would turn out to be a pivotal change in both of our lives. She was diagnosed with Chronic Lyme’s Disease and had posted a video about it. We had talked forever about what I was going through and she suggested I watch. I watched the documentary with tears in my eyes the entire time. This was a story of me. Kim and I were convinced that I to had Chronic Lyme’s Disease. Kim helped me through the next couple of months of preparing to see the LLMD doctor that she was seeing and to get the proper testing to diagnose it. I followed her steps and it led me to this day.

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We all piled in the car Jenna, Kim, Vee and myself and off we went. After arriving at the doctor emotions were running high. We talked about the good ole days and tried to stay distracted until they called my name…it was time.  Jenna and Kim accompanied me to see the doctor. We sat anxiously awaiting my test results. The doctor was reading my results and paused to utter the words “Jesus”, he told us that it was the most positive test result he has ever seen. Kim was crying and I was in shock. Kim had to keep repeating it to me, telling me that not only was I positive by Igenex criteria but also by the strict guidelines of the CDC. When it finally hit me I just broke down and Kim and Jenna rushed to my side to hold me. It was a beautiful life changing moment. He expressed that I was very ill and he was going to help me get better and that I have had it since I was a child. Funny that two girls from a small town in Texas end up with the same disease. 

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My mind was racing with so many emotions that I was mentally exhausted. I could not believe that after all these years I finally had an answer to everything. I have been through so much pain and agony my whole life but it has made me strong and very tolerant to pain. I have listened to all kinds of doctors over the years tell me that I was crazy or making it all up, I even heard this from the people closest to me. I can’t even begin to tell you how soul crushing that is. To have a doctor not believe you is one thing, but to have your family not believe you is another thing all together. I finally made the choice to just be my own self advocate on my health. When I connected with Kim she brought me hope and peace of mind that no matter what she believed me and was willing to help me. It takes a beautiful soul to give someone help when they in return are in just as much pain.  All of this made me realize that I needed to move on from all the negativity in my life and start anew.  

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The girls and I headed out for some grub at a little Mexican restaurant. We sat in a booth for four and talked. Vee had struck up a conversation with an older man sitting across the way from us. He dressed in faded overalls, moss green crocs and a crooked camo cap. He was alone and unmarried, quietly eating his dinner. He obviously was a regular because even the manager knew his name. This man that I will call “R” spoke to us about respect for women and how always to be kind to them. He made my heart smile, surprisingly gentle and kind even with the rough exterior. When we were ready for the check the waitress came and told us that our meal had been “taken care of”. We were shocked and asked by who. Even though the waitress never really said we knew who it was. The kind man “R” had picked up the tab for us. We were very grateful for his generosity and spent some time chatting with him. What a kindness “R” had showed us and we promised to pay it forward.

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We headed back to the hotel to reflect on the day and unwind. I couldn’t have asked for a better group of girls to help me through one of the hardest and joyous days of my life. We laughed, we cried and we goofed off big time! From dog piles to rapping in the parking lot we had an awesome night letting loose. Vee had us cracking up with her toilet paper mask that Jenna made her and her talent for rapping. Jenna graced us with her best dance moves and Kim with her beats. These ladies are infected with kindness and laughter.

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The next morning was a somber one. It was time to head home. We decided to get some breakfast at Cracker Barrel and part ways. We talked over breakfast and then hit the gift store. Everyone knows you can’t go to Cracker Barrel without visiting the store! With our last hugs goodbye we parted till next time.  Jenna and I spent the rest of the trip home listening to music from Griffin House and enjoying the beauty of the drive.

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In these short few days my life has changed dramatically. I not only found the root cause of all the things that I have experienced throughout my life but made some life altering decisions for myself. I learned in this brief period of time that life is to short and I do not want to be surrounded by people that do not make me happy and people who do not have my back. The betrayal I have felt has not left me bitter but more aware of people’s true colors. I have learned the hard way and now I can move on with my life in a more positive way. Knowing what I will have to go through brings me comfort that I have great friends by my side. 

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Letter to Kim:

Kim,

You have been such an inspiration to me. You reached out to me in my most desperate of hours. You helped me find the strength to march on in my journey for answers. Your kind and motivating words touched my heart and soul. You encouraged me with your own story of struggles to take the leap faith. I know that I have reconnected with a life long friend. Words can not due justice to the way you have changed me. I will be forever grateful for your support and honest words. I will always be here for you for anything that may come your way. I believe in you and God will bless you for you have paid it forward in one of the biggest ways possible. You are my friend and always will be.

Love

Amanda


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My Story on Endometriosis

I was diagnosed with endo when I was 16. I was told then I would never have children and I believed the doctors at the time. It was a hard pill to swallow as I wanted a family so bad. Thank goodness I was young and could focus on other things and not let that consume me.

I have had endless laparoscopic procedures to try and get rid of the endo but somehow it always came back or the doctor was never able to get it all and I still have it to this day even after a total/radical hysterectomy.

Besides the surgery I was given Lupron and other drugs to try and keep it at bay but I had serious side effects to the Lupron. After only two shots of it I developed severe hip and joint pain and was not able to walk. I had to discontinue treatment.

Endo is like a spider web of tissue that spreads throughout your abdomen and can attach itself to anything. That includes other vital organs and what not. It can get into your bowels and lungs. It is extremely painful because once it attaches and then attaches to something else it pulls. So when you move it resists and the pain can be excruciating.  I can not tell you how many times I hit the floor crying in agony because of this or when I went to move and all of a sudden a sharp pain came over me that would make me double over. As I got older and became sexual active the pain was in even greater than I knew from the beginning. It was so painful to have intercourse sometimes I would cry myself to sleep afterwards and the pain would last days afterwards.

My worst experience with the endo to date is when I went into the emergency room (by myself) with my little girl in tow for a ovarian cyst that was protruding from my abdomen. I knew this pain all to well but I knew this one was abnormally large (like the size of melon).  I was in so much pain I was delirious. I waited and waited for the on call ob/gyn to see me but was being told he was in back to back surgeries all day and he was still not out. I went in around 9pm that evening and with no pain meds I waited for the doctor. Finally around 2am a whole team of people rushed in and the doctor said we were going to surgery right away to do a laparoscopic procedure and I said “ok, I have had many no need to explain let’s do this”. When I woke later that afternoon I noticed I was put on a morphine drip. I had never been put on a drip after a lap before, so I thought this was very unusual, but thought they felt bad for leaving me with no pain meds before. Soon I needed to use the restroom and called for the nurse to help me. When I went to lift up, I knew right away something was terribly wrong. I lifted my blanket only to see that I had staples across my abdomen like I had just had a c-section, I was mortified!! The nurse kept trying to tell me that this was the surgery he told me he was going to perform, I politely told her I don’t think so and wanted to see him right away. To say the least the doctor refused to see me and I had to take an AMA to get out.

I was heavily dosed with demerol and morphine when I was discharged (I guess he was REALLY feeling bad). My husband and I drove to Texas for Christmas with our daughter a week later. The day after Christmas I noticed that I was looking like I was 9 mths pregnant and ready to pop. My Mom was telling me this can’t be normal and I should call my doctor. Well I called the doctor I had been waiting to get an appointment with for months. Mind you I had not actually seen this doctor yet but he took my call. He told me to come to the ER immediately and I said nope, I am coming to you was not letting another doctor touch me if it wasn’t him. He was flattered but was worried, so worried he called the hospital before hand and setup and OR and pre-admitted me. Again, let me remind you I had not met this doctor at all, not one appointment. So, my husband drove me 8 hours back to New Orleans. We got there around 10pm and he was there waiting on us. Met me for the first time and got me into a room and examined me. He took one look and rushed me to surgery. I remember telling him the whole time “PLEASE PLEASE PLEASE don’t take my ovaries, I want to have more children”, I was terrified that I was about to have an emergency hysterectomy.

When I finally woke everything was dark, there was a faint light at the foot of my bed were three surgeons stood. They were still in their scrubs and gowns and I remember the look on their faces…my heart sank. Dr. Champ came to my bedside and held my hand and prayed. I could not tell you the emotions running through my head at that time, it was so overwhelming. He then told me that he had to take one of my ovaries, that it was shattered, but the other he made sure was working. He told me that the surgery took 12 hours and two other surgeons to help him finish. I was in awe, I did not know what to think about that. He proceeded to tell me that my body was so riddled with endo that he could not even get it all. It had spread everywhere and was wrapped around my kidneys. He said that they left it in fear with my kidney history that they would have done more damage. He also told me that I had a large hematoma at the incision site. He said it was the size of a softball. He was in amazement along with the other two doctors how that thing had not ruptured and killed me. All three doctors were in agreement that it was a miracle I was still alive and that the idiot doctor who performed the last surgery on me did NOTHING!! He opened me and and saw the extent of my ailments and closed me back up!! They wanted his name everything so they could turn him in.  After this experience I found out that the doctor had been using cocaine and had performed over 15 surgeries that day with no sleep. I was his last of the night. It was a damn shame.

I am still experiencing difficulties from the endo but not near as bad as I did before the hysterectomy. I do know its still in me around my kidneys and it does cause me great pain some days but I am managing through it. I was asked to start taking the Lupron again but have refused it. I did not want to add to my pain. All in all I have to say this has been my longest running ailment out of all of them and hard to find. It can only be seen through surgery, no scan will show endo.

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