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!

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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 With HG – Hyperemesis Gravidarum

So this story is a hard one to write and an experience I wish on no woman. I was told at 16 I would not have children at all and that devastated me. I had always wanted a big family and that seemed to shoot all my plans down.  I did however get pregnant and go onto have a baby girl, she was my miracle. I soon thought that because I had her I should not have issues having another baby, I was sorely mistaken.

After having my first daughter I had 14 miscarriages that my doctor and I were aware of. Many of them requiring a D&C. It was a horrible experience and it crushed me. I lost two babies at 6.5 months and that was just about the death of me. As if loosing that many babies wasn’t hard enough emotionally and physically, what I was about to experience was even more traumatic.

I got pregnant again in late 2004 and was bound and determined to find the cause of my miscarriages and to save the baby I was pregnant with. I did a lot of research and found a maternal fetal specialist in Fort Worth, TX to take over my care and thank God I found him. He quickly ran some genetic tests and found I had a genetic blood clotting disorder that was causing my miscarriages. Basically I was forming a blood clot and passing it to the baby. He treated me with Heparin injections for the first six months of pregnancy then switched me to blood thinners. During the pregnancy I developed fibroid tumors but everything worked out in the end and I had a perfectly healthy baby girl. After her birth I thought that I was done having children with all the issues I had throughout, but God blessed me again shortly after when I got pregnant again in 2006.

I found out I was pregnant by accident. I was feeling horrible at work for over a week and getting weaker by the day. Finally one day at work I passed out and off to the hospital I went. There is where I found out I was pregnant again but I was not well at all. I had lost 12 lbs in less than two weeks. I was constantly throwing up, I couldn’t eat or drink anything without getting sick numerous times a day. Blood tests and ultrasound revealed I was only 3 weeks along. My doctor informed me I was gravely ill and that I had HG, Hyperemesis Gravidarum. He told me in most cases it would be over in a few weeks and I would go on like normal but in the meantime I needed to be put on TPN (total prenatal nutrition) and a anti-nausea pump to help me along. So a PICC line went into my heart to feed me 24/7 and a small pump put into my leg to deliver me non-stop anti-nausea medication. I was sent home after a week and I was to be set up with a nurse at home.

I was beyond miserable, words can not describe the torture that I endured during this time. I could not put even water in my mouth without getting sick. It was constant relentless agony. I spent my days on the floor by the toilet, in the bed or on the couch even though I had two other children to look after. There seemed to be no end in sight. My days filled with dark thoughts and endless crying for relief. When the “expected” time frame had passed and I was still very ill my treatment had to continue, 24/7 delivery of TPN and Zofran. I again was told even though I had passed the mark my symptoms should go away soon but they didn’t. They stayed with me to the end.

During the following months I was plagued with kidney infections and getting sick with just regular colds that would not go away. It was hard to be optimistic and to be happy about this pregnancy. I felt so disconnected from reality and from everyone around me. I found out I was having a boy and what should have been the happiest time just wasn’t. I had always wanted a boy and so did my husband. I thought the news would lift my spirits and help me fight through this but I was so depressed it just didn’t matter.  I would have excruciating constipation and migraines that would leave me exhausted and weak for days on end. I had numerous trips to the hospital for various things but the there was one that was almost my demise.

During Christmas time I had begun to get weaker even with the treatment and kidney infection was not letting up and I was sick with an upper respiratory infection. One night my nurse could not ignore that I was becoming more incapacitated. She called the doctor when my fever had risen to 104. They called for an ambulance and I was rushed to the hospital. After arriving my temp was taken again and it had reached an alarming 107. The quickly buried me in ice. I was delusional and hallucinating. Things were coming to me in waves. I know now I had a severe kidney infection and my kidneys were shutting down. Talk of dialysis was becoming a reality. I also had full-blown pneumonia. To say the least I was in bad shape and beaten down. I feared for my baby and myself, I did not think either of us were going to make it through. Three days of being packed in ice and my fever started to waver but the damage was done and I was not getting better. They had tried all the antibiotics that they could while I was pregnant to no avail. My fever loomed around 103 and stayed. My outlook was grim and the doctor was running out of options and time.

It was the night before Christmas Eve and the diagnosis was not good. He told me he did not expect me to make it through the night as my entire body was shutting down that even if they terminated the pregnancy I would most likely not survive either, but I told him that was not an option I had come to far and if I was going to die I wanted to do it at home around my family not in that hospital. He put up a huge fight and kept saying no, but I was not having it. I signed an AMA and they released me. As I was getting ready to be wheeled out he came back and said he could not let me go with nothing, not to just go home without one last-ditch effort. So, he asked if I would be willing to take an antibiotic that could possibly have devastating results but may save “my life” not the baby, I was confused and upset. He had to explain to me that this was it, he did not expect the baby to make it but he wanted to try and save me. After a long-winded debate I agreed to take deadly doses of vancomycin to try and save my life.

At home everyone gathered and my nurse prepared my treatment, it was going to be a long night indeed. I had 8 of the these balls to be infused with, which were to be given every two hours back to back. The thoughts running through my head were paralyzing. I now know what it is like to be on my death-bed and the feelings that overwhelm you and consume you. It was a very dark night and I did not see the light at the end of the tunnel. I laid on the couch and took each of my treatments, I could feel my body being overrun with poison. That is what it felt like, pure poison that was going to kill my baby boy and me. I remember I did not want to sleep I was so afraid I was not going to wake up and that it would all be over. I have never prayed as hard as I did that night, I begged for mercy. I was not ready to go.

I could see the tears of everyone, I could feel my own, it was coming. I remember the rush of warmth that washed over me and the need to close my heavy eyes and I did. The fear washed away from me and I thought this is it, it’s over. I was dying inside, I did not want to go but accepted my defeat and fell asleep.

Much to my shock I woke up hours later and all the treatment was done. I was shouting in my head ” I made it! I am alive! The baby is alive!”. I prayed so hard in those first few minutes of being awake, thanking God profusely for saving me and my boy. It was a miracle, plain and simple and I will never forget it. Everyone was shocked but happy.

I stayed sick and constantly sick but I made it through all of it. I went on to deliver him with minimal complications. Our baby boy had arrived and the thought was that everything was instantly supposed to be over as soon as I delivered….WRONG! They had taken my PICC line out right before I delivered so I was not being fed anymore but I still could not eat afterwards. I was still sick for days afterwards and still having to take zofran. It finally all subsided and I was sent home with our new bundle of joy.

It was short-lived because a new battle awaited me yet again.  I was taken to the hospital three times by ambulance during the first three weeks at home. Only for them to send me home telling me I was having panic attacks. I knew something else was going on but I just didn’t know what it was. My chest felt like an elephant was sitting on it and my neck and right arm were cramped and aching. My heart felt like it was going to explode. Finally, on the fourth run by ambulance to the er I got a doctor that asked me if my right arm was hurting me and I said yes, why? He immediately called for the nurse and said we were going to surgery right away. He knew it was my gallbladder, it was rupturing. It was rupturing as he was taking it out of me, he said I was so lucky I got him that day. I also had an upper and lower gi done at the time and they had to repair six holes in my esophagus and stomach from not eating or drinking during the pregnancy. After all that I was sent home again and everything was good for a few months minus the HUGE adjustment to not having a gallbladder and the after effects of not eating or drinking for 9 months.

I got another large cyst on my only remaining ovary and it was big, I knew what that meant…another surgery to drain it. So again back to the hospital to have it drained by laprascopy.  It wasn’t even two months later I got another one and it was even bigger and it was ready to rupture. So this time going in I was under the advisement that I needed an emergency total hysterectomy. I did not want this as I had not even had time to digest the thought, but I felt pressured into this decision and went with it. So I was given a total hysterectomy and left with nothing. My body went through major shock and it took me a long time to adjust.

I also had to have a bladder sling put in because the tendon to my urethra had been severed during childbirth. TRUST ME when I say this was no bueno!! When this failed it had to be redone…again no fun! Wearing a catheter and not being able to “go” was extremely scary.

Besides all the surgeries for various things my teeth had also started to fall apart literally. I would bite into something and they would crumble. I was in so much pain it was pure hell on earth. I eventually had to have all my teeth pulled on the top and almost all on the bottom except four. It was excruciating pain.

All of the things that I had to endure during and after that pregnancy was almost more than I could handle. Not just for me but for my family as well. The constant carrying for me had taken its toll on them as well. Depression was high during this time and my outlook was not great. The only thing that brought me any joy was my children. Knowing how much I loved them pushed me through those dark days. I know I did not go into a lot more detail about my feelings and experience with this but it is really a place I do not wish to go back to ever, the emotions associated with that time are to much to bare. I hope that everyone who reads this gets a better understanding of what this was like and if anyone woman they know that has this needs all the love and support she can get from you!

Here is a great link to the HG Community:

http://www.helpher.org/

Picture showing how the setup is for TPN

Picture showing how the setup is for TPN

PICC line

PICC line

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TPN

TPN

Zofran Injections for Pump

Zofran Injections for Pump

HER  Foundation HGWorldDay home-banner2

Anti-nausea pump

Anti-nausea pump

Whole kit for anti-nausea pump with Zofran

Whole kit for anti-nausea pump with Zofran

Pump for PICC line

Pump for PICC line

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This is what a Vanco Ball looks like.

This is what a Vanco Ball looks like.