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…

 

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

Curveball

 

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 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.  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. 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.  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.  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

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! 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.   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. 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

01/20/2014change 0 Comments 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. 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. 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 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) 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… http://www.insurancequotes.com/health/lyme-disease-health-insurancehttp://www.wwlp.com/news/politics/state-politics/lyme-disease-patients-push-for-health-coverage http://abcnews.go.com/Nightline/story?id=128770 http://www.cdc.gov/lyme/healthcare/clinicians.html http://commonhealth.wbur.org/2012/06/doctors-lyme-disease http://www.nytimes.com/health/guides/disease/lyme-disease/overview.html http://www.boston.com/lifestyle/health/blogs/daily-dose/2013/08/19/lyme-disease-times-more-common-than-previously-reported-cdc-says/6g8auDQH9DZaLN05WHANZK/blog.htmlhttp://www.lymeresearchalliance.org/signs-symptom-list.html http://lymedisease.org/news/lyme_disease_views/2020-lyme-teen.html http://www.lymeresearchalliance.org/signs-symptom-list.html http://www.youtube.com/watch?v=lClS8IEkvok (Dr. Phil) http://www.youtube.com/watch?v=fHSzYqS-7Sc http://www.youtube.com/watch?v=gQcmggDan84  (one of the best interviews EVER!) Dr.Phil Complete Show Parts 1-3 http://www.youtube.com/watch?v=-SqunhDL_p4 http://www.youtube.com/watch?v=6qCmjLylxjQ http://www.youtube.com/watch?v=KXpXWfM65mo 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. 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.  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, ModelHere 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/ 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 😉

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. 

The Holidays

I decided to break this update into two parts because it has been awhile since I last updated. So here goes Part 1 with all the holidays.

This was the first Christmas that me or the kids have ever spent away from my side of the family and it was very strange. It is just to much for me to travel at the current time so it was a Christmas in Louisiana this year!

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It was hard on everyone not to spend the holidays with my family so we tried to make this Christmas a special one for the kids. We also did this in part because for some of my hubby’s side of the family it may be their last.  Christmas Eve we had dinner at Granny Sue’s house and exchanged gifts. Everyone had a great night and Maw Maw topped it off by letting everyone in on her “Senior Year” of high school and her college plans. If you can’t guess my husbands Grandmother has dementia. For any of you that do not know what dementia is, here is a link to explain it all.  http://www.alz.org/what-is-dementia.asp 

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Gag gift of the night was my brother-in-law getting my hubby some men’s string bikini undies! It was quite a laugh. One of the best things of the night was watching Maw Maw with the kids when they were all opening presents, she was like a kid again…Greatness! 

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The evening winded down and it was a mad rush to beat Santa to the house. Kids had a secret sleepover in big sisters room so Santa could deliver their big gifts. Hubby and I spent quite some time zoning out to Pink Floyd putting together desks & chairs.  End result was a good one…no leftover parts!

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Christmas morning was so surreal. It was quiet in the house except for the pitter patter of little feet and giggling. We lit a fire and the five of us found a spot and opened our stockings from Santa. Then it was time for the big reveal! We took the kids to the hallway and let them storm their rooms to find their new computers, desks & chairs. They were ecstatic!!

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After all that commotion it was time for PRESENTS!!!! It was very odd not to have 20+ people in a room all opening presents at once. It was calm, with christmas tunes in the background and I actually had time to take pictures of everyone opening their gifts, it was nice. To say the least EVERYONE had a great Christmas at the Raccuglia household. 

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Presents unwrapped and in all of our new threads we headed to Granny’s house down the street. We ate like kings and then Granny Sue decided to make some pralines!! She taught me and her BFF how to make them. Can’t wait to give those a go, sooo yummy!! We hung out while my hubby and his brother put on the new fishfinder/GPS on the boat and all of his other new goodies. Kids played in the front yard and I got some great shots of them all together. I loved seeing them play like they were all little again, priceless!

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After Christmas my parents came down to help me and we had a whole new Christmas again! The kids were so happy to get even more stuff from my family. We goofed off and had a blast watching the kiddos open their gifts all over again! 

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New Year’s Eve we hung out with the neighbors and shot off a few fireworks. This was not the greatest of days considering it had been raining all day and all night and was still raining when we were trying to do fireworks, but we had some drinks & laughs and it was all good! 

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Here are some pictures from our last day at the park in 2013!

Now the holidays are over and a new year is upon us. This will be a year of great perseverance for me and difficult journey. My head is held high and I am ready to embrace what comes my way. 
Look out 2014 here I come!!


~Amanda

Stay Strong

Yesterday I returned for my 6 week checkup after being diagnosed with Acute & Chronic Lyme Disease. I love that my doctor takes his time with me and listens carefully to everything I say so that he knows how to treat me best. This is something that I am not used to, as I am used to doctors calling me crazy lol. 

After being on all the medications for six weeks it has taken its toll on my body and my stomach. It has come to our attention that my pill intake has to be cut drastically down so that my stomach will calm down. The decision to start IV medications was made yesterday. I will now be taking my antibiotics by IV and only a small few by pill form. 

This is a huge step in progress for me. I desperately want to get better fast, but I know that I will get worse before I get better. It is just part of the process of killing this off and ALL the co-infections that I am plagued with. After going over all of the lab tests and symptoms it is clear how sick I really am and you would never know by looking at me. I can not stress enough how debilitating this disease is and how great it is at masking it all. I hate the famous line “well you don’t look sick”. That line makes me want to vomit and explode on someone.

I met a man from Arkansas while I was there and he was new to all this but had been suffering for about three years. We talked and talked about all the things that needed to be done and how great our doctor is and how effective his treatment plan is. He shared a little secret that most of us with an invisible illness don’t talk about alot to other people. He mentioned that his wife was having a hard time accepting all this that he felt like no one believes him. 

We have all been there. I have talked about it before how being this sick for so long can take its toll on any relationship. I feel like I have been a burden all these years. That nothing I was ever doing was ever good enough because I was not at my best. It has strained many relationships in my life including my marriage. It is an awful feeling knowing that you are not always pulling your weight and causing that person to pick up the slack. It is alot of pressure for someone. Overall, these people just don’t understand that we don’t want it this way, we want our lives back to whatever “normal” is or was. 

I wish that everyone this disease and many others like it could come with an instruction manual for all the people in your life, especially your spouses.  Maybe then it would not be so hard for them to accept. Maybe they could start to understand that we did not ask for this nor did we want it. It is, what it is….deal with it! If you truly love that person you should give that courtesy of believing them even if you can’t feel or see it for yourself. It takes a whole other level of commitment and love to move through the treatment of this disease. I hope that for most of you out there that you have a spouse and family that love you and are with you every step of the way. But for most I know you are in the same boat as I am, they can’t take it. They up and move on without you, never wanting to see you better and normal for the first time.  I have listened to many people that are back to “normal” now that say those people try to step back in your life after it is all over with. This pains me greatly. What makes them think you would want them back in your life if they can’t tough it out with you through the tough times. To me that shows a lack of character and commitment. There is no love there, it is a selfish relationship. Those people need to be purged from your life so a new and positive place opens up in your heart.

Ok enough of my side rant! To say the least here I am excited that my treatment is going in this direction because I know I will start to get better faster than I would on the pills. I will still be sick for a long time but there is an end in sight. I can see the light at the end of the tunnel. I maybe crawling there but I will get there, I can promise you that! I have great friends and a community of people like me all cheering me on, like I cheer for them. I will keep everyone posted!

I have to keep telling myself over and over again, this to will pass. You will come out stronger on the other side. People in your life that are not worthy will move on and true happiness awaits you on the other side. It will be a long bumpy road but you will get there one day. Keep your head held high and your emotions close because this is the ride of your life.

Stay Strong & Surround Yourself With People Who Love You!

 

Treatment

Well it has been over a week on treatment and I am doing fairly well with the meds. I have started to loose the swelling all over my body and my stomach is on the mend from the inside. Friday-Sunday are my weakest days all because of one antibiotic I take only on the weekends (Flagyl). 

I started a new round of Flagyl today so we will see if this round goes like the last one or intensifies symptoms. It has been difficult to write on my blog as my brain is just not up to par for putting my thoughts to words.

My spirit is still hopeful and I know I have a long way to go but I am optimistic that it will all be for the better in the end!

I came across this today on Yolanda Foster from the Real Housewives of Beverly Hills. She also has chronic lyme’s disease.

http://radaronline.com/exclusives/2013/11/yolanda-foster-real-housewives-beverly-hills-blog-lyme-disease-struggles-shell-woman-used-to-be/
http://radaronline.com/exclusives/2013/04/yolanda-foster-lyme-disease-video/
http://radaronline.com/exclusives/2013/01/yolanda-foster-lyme-disease-real-housewives-of-beverly-hills-video/

http://mandaswords.weebly.com/1/post/2013/11/treatment.html