Don't forget to check out Astrid's blog to: http://rocasvida.com/
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!!!! Don't forget to check out Astrid's blog to: http://rocasvida.com/
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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! 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 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 we 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 was 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 stay 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 "did". Funny enough the man was the piano player for Crystal Gayle...GO FIGURE!! So I captured a few shots of our up and coming star 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 they 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!! <3 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 <3 Here is to US and our NEW future!
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://www.nyhealthinsurer.com/2013/blog/lyme-disease-and-health-insurance/ 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 1-3http://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, 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/ 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 |