Been Awhile…

Hey Everyone!


I know it has been a very long time since my last post but a lot has been going on in my life and I finally have a minute to breathe.  One of my greatest accomplishments since I have been away is getting Lyme Branch up and running. So if you haven’t checked it out, go check it out now @ www.LymeBranch.org!


Lyme Branch also had its first event at the Drafthouse Cinema in Austin, TX. We had a great turn out for our first event and the live music by Matt Cline ROCKED!


I am currently working on more events to come this summer for Lyme Branch. So far we will more than likely have a kayak tournament in Louisiana and an event in our hometown of Mansfield, TX this summer.


As for my treatments it has been a bumpy road with many ups and downs.  I have been steadily declining since Nov of last year and I have about bottomed out. Been very weak and tired for the last few months with it only getting extremely worse this last month. Doc has pulled out all the stops and is trying to keep me out of the hospital and get me back on track. I have also been seeing a pain management doc to get the pain under control (that is a HUGE blessing)! The pain has become relentless in the last few months and with each new week it gets stronger and stronger. I have a pain patch and a topical cream that I use now and so far so good. Doc has also got me back to sleeping with some heavy sedatives. I can’t tell you what a world of difference getting some sleep has done for me! I have also been doing a liver flush and detox baths to keep the toxins at a low.


I go back in a few weeks with Kim and our new Lymie friend D. Hoping that it turns out to be a great visit all the way around.


I will try to post more frequently again and I will defiantly keep everyone posted on how I am doing. 


Thank you everyone for all of your support, it means the world to me!

Some pics from last post to now, ENJOY!

Astrid’s Meet & Greet

So we had a little party for Ms. Astrid (Kim) to meet the whole gang before she had to leave us. Quite an adventure with my closest friends and family. It is all laughs and hugs at our little backyard shin-digs. Here is a peek inside….OPA!!!!

GO TO MANDASWORDS.WEEBLY.COM to view the pictures 🙂
Don’t forget to check out Astrid’s blog to: http://rocasvida.com/ 

Path To The Light…

 

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A path to the light has been found, a new beginning has emerged from all the pain.

I can not begin to tell you all that the last couple of weeks has brought to me.
Another doctors appointment and Kim coming to the Big Easy! 

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First thing first Kim (aka Astrid) came to stay with me in NOLA!
I can’t tell you how excited I was for her to come.
I was like a giddy little school girl the whole time, waiting impatiently.
When she finally arrived Robbie & I swooped her up and took her for a stroll in downtown.
I do say I wish we would have had more time there as we were having a grand time.
We visited shops, saw the sites, watched local dancers & musicians,
revisited places from the Tomboy years and made great plans.
It was a magical day and I was so happy she then got to meet all the wonderful people in my life.

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We headed out to the doctor the next morning and of course mother nature was dishing out some freezing temps with sleet and snow. It was beautiful and serene to see the snow falling through the pines. We had a plan to listen to her playlist the way there but the music quickly faded as were chatting away.

We went through our checklists for the doctor because…we forget. I teased her about her “SURPRISE” after we left the doctor…I know she was so excited that I planned this without her knowing anything! We talked and talked about everything and anything. It was a great drive there!


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Arriving at the doctor we got all checked in and had some laughs with their Valentine Bag display. Drop a little sweatheart into the bag you liked the most. Good Times! Well we finally got called back and Kim went first. Before doc came in she shared with me some truly inspiring words from her book that left us both in tears. We held hands and prayed as the moment sank in. Doc came in and we shared with him her words of inspiration and we all hugged it out. LOL<3
She broke out her list and started firing questions as I took notes in the corner…again we forget. Then it was my turn and I started firing away with my questions and Kim was in the corner taking notes. We came and accomplished the goals we set out for our recovery and left with our hopes and hearts filled!  I have to say each visit to see him is very emotional. We laugh, we cry and we PRAY! Words can not express the true depth of how much I have been blessed to have Kim & our LLMD in my life. They are both truly an inspiration and my saviors. All three of us will do great things…you just wait and see!

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So the moment yall have been waiting for….THE BIG SURPRISE!!As soon as we left doc’s office we headed to our surprise destination. Kim was so excited and we talked about all that we accomplished in our visit.
We finally arrived at The Paragon Casino!!

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Kim was SO EXCITED!!! We got checked into our room and I did my last IV treatment while she got ready. She helped me fix my hair because it is sooooo dry and frail from all the antibiotics it just looks like a big rats nest most of the time. She worked her magic and BOOM brushable hair!! I was one happy lady! We got dressed and headed down to see the gators in the lobby and off to the casino. I did not have a care in the world that night I was free from my port & IV and with a true friend. Kim says I was walking tall that night, beaming with confidence, I personally did not feel so confident…I just didn’t care. I was not there to impress anyone just wanted to have a great time and unwind with her. I wad kid free, hubby free and stress free…could not ask for anything more!! We played the penny & nickel slots most of the night and we met some interesting people. THANKS to W for the great service lol! After we were done in the casino we popped back to the room to freshen up and then headed for dinner in the little 50’s diner they had. We brought the food up to the room and talked some more. We came up with some great ideas ( I will be sharing after my visit to Austin…so keep tuned). I had the best night hanging out with her. I felt free for the first time in a long time.

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The next morning we packed up and headed down to check out. While we were checking out I stopped to take some pictures of Kim in the lobby and out of nowhere an older gentleman asked who she was. He assumed because I looked all professional that she was someone famous getting her pictures taken. Funny enough the man was the piano player for Crystal Gayle…GO FIGURE!! So I captured a few shots of our up and coming start Kim and Mr. Dunlap. Just a side note did some researching and he and his brother also played for Loretta Lynn and are in the Louisiana Music Hall of Fame! 

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On our way home we were passing an old PIGGLY WIGGLY and we both looked at each other and said “I haven’t seen one in ages, lets go!” So, we went and in that split second decision changed the course of our lives forever.

We went in to buy some shirts and ended up making some new friends. Kim was telling the ladies all about Lyme and I was talking with the cashier and coming up aisle 8 was a Cajun as true as the come. He was speaking in that Cajun tongue and my messed up brain was having a hard time keeping up. He then asked me if I knew God’s name…and I just looked puzzled. He then said God’s name is HOWARD. 

I turned and looked at Kim and said you have to hear this. One thing led to another and before we knew it we were in the back of the store where he was smoking some turkey necks. It smelled sooo good. He was so sweet and asked if we had time and I said of course. He said to meet him upfront and so we headed up. 
On aisle 8 of the Piggly Wiggly a new mission and dream was born. 
I can not tell you the details of this yet but you will know all about it shortly.

After a short while he came up aisle 8 bearing a big gift. He had brought us some yummy ribs to take home for dinner. Now Kim and I both know he bought those for us and we are truly grateful for his generosity because he did not have to. One of those moments in life when you know a kind and giving soul and makes you feel the urge to Pay It Forward! Thank you for showing us your true soul, we love ya Mr. Gautreaux!! ❤


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To say the least Kim & I talked of our new plans the whole way home. I took notes of our conversation and all the details from our trip. This is one of the best days of my life, I will never forget the birth of this new beginning. Our lives and the people around us will forever be changed because of this day. 

There will be more to come on all the developments but just keep this in mind BIG things are happening for these two ladies…BIG DREAMS COMING TRUEOur path to the light has begun.


2-7-14 New Beginnings Pinky Swears LOVE YA SWEETIE ❤
Here is to US and our NEW future!
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TO SEE THE GALLERY OF PICTURES IN HD FORMAT PLEASE GO TO MANDASWORDS.WEEBLY.COM

Curveball

 

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Life has thrown another curve ball my way and brought me to my knees for guidance from above….

Life is precious and short. 

In the blink of an eye…
a lifetime could pass you by..
everything can change…
So forgive often & love with all your heart…
You may never know if you will have the chance again


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As many of you know already my husbands grandmother passed January 21 unexpectedly. Her passing has caused me great pain inside that I have not shared with anyone. From someone who lost their grandfathers before I was even born and to loose both my grandmothers fairly young she became my Maw Maw. She had been battling dementia in the last few years of her life and was enjoying her new life in a great home that catered to her needs. She had an accident that left her with a broken hip and broken femur but she pulled through and had started physical therapy. All in all I thought for sure she was going to be fine, but sadly it did not turn out that way. The morning she passed she went to her PT as normal but asked if she could stop early because she was tired. The nurse said it was fine and took her back to her room to rest. The nurse got her all fixed up and said she would be back to check on her in a little while, when she returned she had passed in her sleep. I am forever grateful that she passed on her own terms and peacefully in her sleep. 

My heart is saddened from the loss. She was a very interesting woman and I loved to hear her stories. She would tell me all about her days as a child on the strawberry farm and her life up until Paw Paw had passed in 2004. The great adventures they took and the love of her family and church. I watched as her memory faded and she slowly forgot the things that meant so much to her. It was hard to watch my husbands family loose her that way. 

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The service was wonderful and the pastor made all the difference in the world as he knew Maw Maw Ruby personally. He brought an intimate setting to her service that I will never forget. It touched my soul and left me thinking. 

In a day that brought such chaos from the icy weather, closed bridges, freezing rain, nurse coming, infusion and my picc line dressing coming off a beautiful soul was laid to rest and a fire lit in me.


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My emotions from the service impacted me so intensely because of my own internal battle with my mortality. After finally receiving a diagnosis of Chronic Lyme Disease and Lupus my life has changed dramatically. I feel like I have went through stages that has left me where I am today. Not all are sunshine and happiness and not all are dark and depressing. Somewhere in between I had a breakthrough, but this loss set me back.

I started out with bittersweet emotions finding out I had Lyme Disease. I was grateful for FINALLY having an answer but saddened at the grandeur of the disease. I struggled with the acceptance from close family and friends. Still till this day there are people in my life that do not wish to learn or acknowledge the depth of Lyme and its impact on my life. I moved past the bitterness and tried to focus on the healing. This is easier said than done. Things that were going on in my personal life and in my family at the time just broke me. My whole world ceased to exist as I knew it. Things had changed and my heart was broken, my dreams shattered. 

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Something profound came out of this catastrophe, a new me. I had been broken for the last time, I could not fathom another moment of the past to haunt me. I had hit my rock bottom of emotions. Everything that I held dear was slipping from my grip. If it were not for a few true friends I do not know how I would have fared. Their words and guidance brought me from a place  of darkness to a warm place in the Lyme Light

(Kim, Kara, Deb & Jess I am forever grateful for your kindness & endless support <3)

I have described to my friends this experience that I had in a unique way. It was like being led to the water by the congregation for a cleansing of my soul, to be reborn. To be in the river and have my body thrust into the depths to wash away every bit of hurt and resentment that I carried with me. It was purifying and at the end everyone rejoiced in my new found empowerment. 

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I have never been more clear on my path than I am now. To me I was given the greatest gift. A gift of true forgiveness. Do not get me wrong I did not forget the terrible and unthinkable things that have been done to me but I no longer were going to let them define me. I have moved on from the hate, resentment, pain, isolation, betrayal and regret. I feel I have been unburdened by these debilitating emotions. I made it to the other side and I am so grateful. My conscious is finally cleared and my heart purged for a new beginning. 

My purpose and calling now is on healing my broken body and elevating my mind to utter peace. For the first time in my life I need to focus on ME. It is not about everyone else right now. This time…this time I need the help. I need the troops to rescue me. I do not seek your pity. I seek your wise words on your experiences, your words of encouragement, a helping hand when I can not get up on my own, an understanding that you don’t understand how this feels and offer support regardless without judging me, I seek unconditional friendship and love.

I am realizing how fragile my life is after the passing of Maw Maw Ruby. How in a blink of an eye it can be over. So why would I want to spend it dredging up the past and living in pain. I have moved on from that place but it brings me back to a sense of urgency to get well. I do not want my life to end on that note and this disease is not going to define me but RE-DEFINE my life.

I mean that only good is going to come from all that I am suffering and going to suffer. This disease has brought people from my past back into my life and started new friendships that will never be replaced or forgotten. 

A beautiful story is unfolding right before my eyes and this roller coaster is going full speed ahead!

Hold on tight…it’s going to be a bumpy ride!

Emotion Coaster

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So, I never thought I would wake up feeling the way I did today. It has been a challenging day already and it is not even NOON!!  My mind is all over the place. My emotions raging through me like a bat out of hell.  My hands shaking so bad today that I can hardly hold a cup to drink. My body trembling and spasms all over. The ticks have taken over for sure today!

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I felt somewhat accomplished today that I got to inform a sweet lady from CarePoint named Patty about Lyme Disease and what it involves. This woman lives where Lyme originated and did not know hardly anything about it….that is just sad to me.  It angers me that people and doctors are not educated on this ever growing epidemic.  

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This is the first time I have felt this extreme of symptoms at one time. I guess this is the IV antibiotics doing their job finally. Ironically this is a good thing, not a bad thing. Feeling worse means that it is drawling the bacteria to my bloodstream so it can break it up and kill it off.

For the last few weeks have slept so much that the days just seemed to be meshed all together. Getting up to do something was such a task or just trying to “think” was such an effort it wore me out. My parents were a great help being here to pick up my slack but now they are gone and hubby is back at work again and its all on me again.  This is a challenge as I know I am only going to get worse and I do not know where that leaves me being able to care for my kids and my family. Its alot to ponder and yall have a front row seat to this soap opera.


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Thanks to two very sweet women in my life my day is brightening up. I am blessed to have them to call or text for whatever I need. Even though one is over 500 miles away and the other is just around the corner, they are always there for me and I am forever grateful.  So a big shout out to the both of you, I love yall so much! Thank you both for being such great friends to me.

Till next time……


Amanda

Reality of Treatment & More

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    This is a two part update in one post as it is taking me longer and longer to get the energy to put information together that makes sense. First part is on my IV treatments and the rest is on Lyme today and how it effects everyone. Please get informed there is so much information out there and I have saved you alot of trouble by posting many of the links in the second part of this post. Thank you evreryone for your continued support and prayers they are very appreciated.

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    Two weeks of treatment have come and gone and I have definitely noticed a difference in how I feel. I just wish this was going to be the worst of it but I know sadly it is not. My energy level is low that even getting up to go to the bathroom is a task that I would rather not partake in. My phone rings off the wall and a streams of text messages a day. I wish I had the energy to talk to everyone that calls or texts but I don’t. I PROMISE I am not ignoring anyone on purpose 🙂 
    Just writing this blog takes so much out of me. My sweet friend Kim had a great idea to start updating with video but I have not been as brave as her to expose that part of this ugly, relentless disease. Maybe one day I can but for now I will just have to keep using pictures and my written word.

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    My friend mentioned something in her blog about the cost of this treatment and how insurance companies will only pay for 28 days of “investigational treatment” I thought I should add that to my blog as well. The cost for most people after this period will be on average $45/day. That is only for IV Home Infusion, that does not count the other antibiotics, medications, supplements and supplies needed. The reason that this is so important is there is such a coverup going on here and people are dying from Lyme because they can not get proper treatment! The cost of treating Lyme is very expensive and most doctors don’t want to get into trouble for treating it. So here are a few things to ponder.http://lymedisease.org/news/lyme_disease_views/lymepolicywonk-annual-lyme-costs-now-top-3-1-billion%E2%80%94it%E2%80%99s-time-to-wake-up.html

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    To give you an idea on how POPULAR insurance companies view Late/Chronic Lyme Disease, here is what is in your EOB’s (Explanation of Benefits):Aetna– http://www.aetna.com/cpb/medical/data/200_299/0215.html
     (If you actually read this all the way through you would be amazed at the constant contradictions in how it is confirmed and how it is treated. Just to give you an idea here is a clip from it.

  • Aetna considers outpatient intravenous antibiotic therapy medically necessary in adult and pediatric members with the diagnosis of Lyme disease only when it is based on the clinical presentation of signs and symptoms compatible with the disease and supported by a positive serologic and/or cerebrospinal fluid (CSF) titer ( So they want a SPINAL TAP)by indirect immunofluorescence assay (IFA), Prevue Borrelia burgdorferi antibody detection assay, or enzyme-linked immunosorbent assay (ELISA), which itself is validated by a positive Western Blot Test (see CDC criteria in note* below).~Aetna considers the following diagnostic tests for Lyme disease experimental and investigational because there is inadequate scientific evidence to prove their usefulness in clinical practice: (Click the link to see full list-you won’t believe your eyes)

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    United Health Care-
     https://www.unitedhealthcareonline.com/ccmcontent/ProviderII/UHC/enUS/Assets/ProviderStaticFiles/ProviderStaticFilesPdf/Tools%20and%20Resources/Policies%20and%20Protocols/Medical%20Policies/Medical%20Policies/Lyme_Disease.pdf ***This one actually admits in its studies section that “IV ceftriaxone therapy resulted in short-term cognitive 
    improvement for patients with posttreatment Lyme encephalopathy, but relapse in cognition
    occured after the antibiotic was discontinued.”
    Blue Cross/Blue Shield– http://www.anthem.com/medicalpolicies/policies/mp_pw_a050480.htm


  • Some interesting sites on how big this is…

  • Dr.Phil Complete Show Parts 1-3

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    If you are reading this then you know someone with Chronic Lyme Disease. YES, YES YOU DO…ME!! So I am pleading with you to raise awareness. It is so more common than you may think. You may know several people with it and not know it or you yourself could have it and not know. People ask me all the time how “I knew” and I have to say it was a series of events and Gods impeccable timing that has gotten me to where I am now. I have had medical issues almost all my life whether it be one thing or another and to find out now that it was all related to Lyme Disease in one way or another angers me beyond comprehension. All it would have taken was for a doctor to test me for it, but because most doctors are not taught about Chronic Lyme or “It’s not common/or in this area” I was never tested or treated for it and went misdiagnosed for over 20 years! I also have to say that the current test that general labs do (western blot test) is not very accurate in determining if a person has Lymes disease unless it is caught within the first couple of months of being “exposed” to it. Like how I use the word “exposed” instead of bitten. The reason I say this is because you can get Lyme disease even if you are not bite by a tick!!!! AGAIN, YOU CAN GET LYME DISEASE EVEN IF YOU DO NOT GET BITE BY A TICK!!  It as not well documented but more and more studies show that Lyme disease is passed from mother to baby during pregnancy and that mosquitoes, small rodents carry Lyme as well.So, please do not be fooled by this massive ploy to hide this from the mainstream public. People are profiting off of this disease worse than any other I have ever seen and it needs to stop. People need to stop dying for inadequate care from doctors and insurance. I do not wish this disease on anyone, not even my worst enemy.

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    This disease strains every relationship that you have in life one way or another. No one fully accepts or understands what this disease is like unless they have it themselves. It takes on so many different things that it is not just one thing that defines it. The symptoms cover such a broad spectrum and come and go that people and doctors think you are crazy and need mental help. Its very hard for a person to have their own family and friends turn on them. The isolation that CLD (Chronic Lyme Disease) brings on is unimaginable. 

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    So to everyone out there family, friends, acquaintances and my fellow Lymies, I pray for us all to find peace with this disease and I pray for full disclosure to the world. So that one of your family members, friends, co-workers, friend of a friend,  or acquaintance does not feel the burden as I do now. The more it is talked about the more they will have to listen. If all of our voices become “ONE” we will be heard.Lots of love my friends it maybe awhile till my next post, so keep me and my fellow Lymies in your prayers…we need them! #Lymies4Life http://statigr.am/tag/lymediseaseawareness

  • Whole site dedicated on everything LYME! http://lymepedia.org/
  • Here are a list of celebrities with Chronic Lyme Disease:Daryl Hall – Hall & Oates
    Yolanda Foster Real Housewives
    Amy Tan author
    George W. Bush
    Parker Posey
    Alice Walker
    Peter Sarsgaard
    Richard Gere actor
    Tim Simpson, professional golfer
    Diane Varsi, actress
    Alice Walker, author
    Christie Todd Whitman, Governor 
    Ben Stiller & son, Comedian
    Christie Brinkley, Model
    Here is a longer list of famous people with LD or CDL
    http://lymeinside.wordpress.com/2011/11/22/index-of-famous-people-with-lyme-disease/
    http://hausfeldaboutlyme.wordpress.com/2010/06/30/celebrities-with-lyme-we-cant-all-be-crazy/
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  • PLEASE WAKE UP AND SPREAD AWARENESS!!!
    You may just save a life!
    http://timeforlyme.org/join-donation.html
    http://www.lymeresearchalliance.org/involved_donate.html

Medical Update

Here is part two of this big update. Sorry it took so long…the ticks took over 😉

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My last medical update was on my 6 week checkup. An eventful day full of blessings. Nestled in the back pines a new beginning was awaiting me. Not only did I take a huge step into getting well but made a new friend along the way. God has a funny way of bringing people together that need each other in that particular time in their lives. I have learned that this has happened quite often in my life and I am grateful. I do not believe in coincidence, I believe everything happens for a reason. It is God’s plan and is our fate. 

I spoke before about a man that I met waiting to see the doctor. I have since become friends with him and we talk frequently now to help each other through this journey. I have made a friend for life and I couldn’t be more grateful that God has brought us together, to help us stay motivated and to fight for life. 


I truly meant that it was a day of blessings. I left with orders for IV medication and for the first time hope for the future. On the way home all I could focus on was the reality that maybe one day I would be blessed with a “normal” life. A life free of physical pain and mental anguish.  

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The next two weeks were very challenging for me. I went on a search for a surgeon to place the port-a-cath and a home health company to take over my care. Through recommendations I found the best surgeon in my area. After my consultation we were a go for surgery. It was really nice for the first time to have a doctor not question my disease and just say “let’s do this and get you better”!

I had my orders to do my pre-op workup and a date set for the out patient surgery. Mixed emotions flowed through me. It is very overwhelming but invigorating to finally be on the right path. During my pre-op another amazing thing happened to me. I was going in the room for my chest x-ray and the tech asked me if I minded talking to someone for a moment. Without hesitation I obliged. A beautiful woman came in that I could tell right away was ill just by the look on her face. She introduced herself and asked me about Lyme disease. She to had been diagnosed with Lyme and was there doing blood work for her visit to my wonderful doctor. I eased her worries by reassuring her that our doctor was the best and he would get us healthy again. I explained all the process and tried to help her all I could. I gave her all my information so she could contact me anytime she needed. Again, Gods plan brought two people together that needed each other in that very moment. I say this because a series of events had to happen so that we could meet at that exact moment in time. 


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The night before surgery was definitely full of emotion. Even though I have had like a million surgeries this was different in so many ways. I was prepared physically to go through with this change but mentally I was struggling. To say the least it was a sleepless night and soon the morning sun had risen and it was time.

My Dad accompanied me to the hospital and got me all checked in. It was excruciating waiting to go back but the staff at this hospital were all so kind and made me feel so safe. It was great they could ease my anxiety without any medication at all.

After the surgery my Dad brought me to the infusion center to get my first infusion treatment.Then it was time for home to recover from the surgery. 


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After the surgery I was sore for a few days but overall it was not bad. I had to keep a peripheral line in for 10 days after the surgery. This was quite a task for my home health nurse as I have the tiniest uncooperative veins…EVER! She banged me up pretty bad every time she had to drawl blood or replace the IV. After 10 days I was able to get the stitches out and the sterile dressing removed from the cath site.

The day after the stitches were removed it was finally time to access the power port. Let me tell you I did not expect it to hurt the way it did. I was in agony because my nurse tried like ten times to access it and couldn’t. Every stick with this mosquito looking thing sent me on a rage inside. I am very good at hiding my pain and I was having a hard time keeping composure. I am not sure if it was her not being experienced enough or I was just being a baby. I do know it is the oddest feeling to have someone stick a needle into a void in your chest to drawl back and you can feel a burn and pressure like your chest is going to implode. She stopped after about the fifth try and said “why don’t you take a couple of pain pills and let them kick in before I try again”! I am sorry NO ONE wants to hear a nurse say that! To say the least she could not do it and called for backup. A few hours later she returned with another nurse (more experienced) and she accessed it on the first shot and I didn’t feel it at all!

So with the port accessed and all my supplies delivered, it began. A new chapter in my journey. 


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I want to stop and thank EVERYONE who has taken time out of their lives to help me throughout this adjustment in my life. The infusions drain me and I am a shell of my former self. I have good and bad days but right now more bad than good. I keep my head firmly on my pillow and dream for a better, brighter tomorrow that I know will come. 

Until next time my friends…

~Amanda


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My treatment at the moment is as follows:

Thursday – Sunday Ceftriaxone Eclipse Infusion 2x/day

My list of pill form is in the pictures. 

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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