Houston, We Have a Problem...


What a difference a day makes… Just last week I was cozying up in my cute farmhouse in Provence with my favorite caregivers, Teddy the big dog with a heart of gold, Valentine the little dog snuggled between my boobs, and Iris the little injured black stray kitten holding on for dear life, 50 sheep outside, plane tree lined streets, Alpilles mountain views and the promised Provençal lifestyle depicted by my favorite Impressionist painters at my fingertips…

And today…

I am in a palliative care center in Paris.

But let’s back up… What could have possibly happened within a few weeks for this drastic change? Well, it turns out I am a tad bit more delicate than I thought. With the past six years that I have had ALS, I have had everything under control, monitored and finely tuned… Caregivers, medication, feeding tube formula, vitamins and my sanity… And then all hell broke loose. My caregivers quit because I had too many animals and they hated living in Provence. I stopped taking my medication, couldn’t find a good masseuse, the kinesiologist never returned my calls, the post office couldn’t find my little farmhouse to deliver my feeding tube formula so it got lost, the new Moroccan Muslim nighttime caregiver was too busy smoking, drinking espresso and praying to Allah to give me my vitamins, I didn’t have the energy to ask for my regular chai soy latte and green juices. My husband, David, showed up at the house on Friday with three new caregivers who, bless their hearts, were/are idiots and I think one of them had elephantiasis of the balls… literally… which was the straw that broke the camel’s back. My little body just couldn’t take it anymore and I crumbled.

I couldn’t hold my neck up, I couldn’t even swallow water or food, and on a TMI (too much information) level, I couldn’t go to the bathroom without some powerful drugs. A recipe for disaster. Time for a little hospital visit, wouldn’t you say? The paramedics arrived and got me ready for transport to the hospital. Here’s the best part… They took me out through the window like a fat person because my doors were too small for the stretcher but probably just to humiliate me. The doctors at the hospital thought it would be best to check into a palliative care center (whatever that is) that specializes in ALS losers. David thought it would be best if I did so as well, but… in Paris. Au revoir, Provence.

 
So here I am. I arrived with a broken heart, a broken body and broken moral. I thought to myself, “Maybe it’s time that I exit gracefully, while I still can.” I had David take me to Notre Dame Tuesday night like to, I lit a candle and started to have a little discussion with the man above. I wish I would have politely asked, “God, why must I carry such a heavy burden?” But instead, it came out more like, “Dude, what the fuck?”

 
I asked him, “Why are you throwing so much at me? Are you trying to force me to quit? Are you trying to break me? Are you trying to see how much I can take? Are you searching for my breaking point?” As I sat there waiting for answers amongst a sea of tourists, I felt alone. All alone for the first time in my life and especially the first time with ALS. As I waited for some sign from God, I started to feel myself break. All of my six years of bravery were being reduced to rubble right before my eyes. I was losing my mojo in Notre Dame of all places.                                                             

 
Then I thought to myself, “Ellie, this is what separates the mice from the men.

You can either give up like a coward or forge ahead and prove to yourself that your life is worth fighting for. You just might have to fight a little harder."

 
So, call me a fool, but this is what I decided to do. I am going to fight my ass off to stay alive. I have now transformed the palliative care center into my wellness center. I have informed the staff that I am not here to die, I am here to thrive. I will spend the next month recuperating on my own terms. This means doubling my food intake, everything natural and organic, increasing my amino acids, pounding my medication, sucking down green juice after green juice, chai soy latte after chai soy latte, coconut oil, coconut water, flaxseed oil, turmeric and guacamole… Lots of guacamole.

Massages, meditation, acupuncture, physiotherapy and kinesiology.

 
That’s what I will be doing physically. Mentally, you know what makes me happy… My blog, my shop and writing my book… So that’s just what I’ll do. Little does this palliative care center now that I will be transforming my room into an office, an antique shop and a writing retreat.

 
Gracie and David have been with me every step of the way. My mother and sister are keeping me laughing and all of my friends, as usual, have been fucking champions. And I have decided to treat myself like a princess while in Paris and I will order beautiful flowers from Odorantes on rue Madame and chocolates from Patrick Roger on Boulevard Saint-Germain.… To keep my spirits up, of course.

 
I will be here for a month, so let’s make the best of it!
XOXO

173 comments:

  1. Dear Ellie, I read your blog all the time though I have only posted some comments anonymously. Because I am at work. :-0 You have been on my mind .. I was thinking what's up with her?? Like you are my girlfriend ( I wish !!) I am so sorry this happen in the midst of your Provencal idyll. I think your response is spot on. Just keep going. It is a test. Life is a test. And every time I snivel over some tiny problem that I have then I am going to think of You. And this. Rise up from the rubble and keep on walking. I will keep on lighting candles for you. Hugs over to you, K.

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  2. Oh Ellie, We have been so worried about you. Thrilled to see this post and absolutely leveled by your courage. You are incredibly special, with so much to offer the world. Keep fighting pretty girl…♡♡♡

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  3. You remind me of Jacob in the Bible! He wrestled with the Lord, but don't we all! Ellie you're a brave warrior and the fight you have within you could only come from above! You have been prayed for inspiring beautiful woman!

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    1. Ellie, you fight the fight girl! Keep strong and tell the "palliation" side of things to fuck off. Suzana xxx

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  4. Oh Ellie, What a surprise and a scare! You've had such a carefully orchestrated routine up until last month and then piece by piece your support structure failed you through no fault of your own. For starters you should have the best caregivers and they should love to make your world better and healthier! You deserve no less.

    I LOVE that you've so quickly turned it around and found your mojo, your 'self', and are going to take advantage of this month of respite to fight your way back. You are SO inspiring and I know you can do it!! And I love that you're in Paris near David and Gracie; your number one loves and supporters. We are ALL rooting for you and praying hard (in good language and bad!!:) I want to hear everything about your journey Ellie. I believe in you!! Basia xxxooo

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  5. I know you will be fine. You are strong and have a lot left to do. We all need you and your fighting spirit. Keep us posted and I will continue to pray as I have every night

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  6. Darn right you will fight your ass off! We need you-I need you! I feel so silly writing this but when I read your posts, I feel like you are writing to just me. You are the one "friend" that I have that cusses, is bitchy, a little snobby and says the things everyone is thinking but doesn't have the balls to say out loud. BUT...your heart is huge. There is nothing you wouldn't do for someone or something you care about. You are passion personified. Oh how I wish I could help you! To give back to you in payment for all i have gotten from you would be my sincere pleasure. I'm glad you are surrounded by those who adore you. You are so special and God has, is and WILL continue to bless you. Love and prayers from podunk Montana.

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  7. Bless you dear Elllie, you are an amazing woman.

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  8. So happy to hear from you. I am sure I can speak for everyone when I say we were so worried. Take your time and get your strength up. We are routing for you!

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  9. You are loved, dammit!

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  10. Darling Ellie, I should have known that something was awry when you didn't have a new post for a while. Please know that you are being prayed for today and in the days to come. If my Catholic church still allowed candles I would light one for you today but since the fire department has outlawed the lovely little votives, I will light one for you here at home. Your sense of humor is still intact and you will give the palliative care center a new way of handling illnesses. God bless you today and always.

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  11. We are ALL there with you Ellie. You go girl! They ain't seen nothin' yet at your "spa" I feel your strength. Love from NYC. Susan

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  12. I absolutely adore you! I so happy you share your fighting spirit with all of us!

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  13. I am so happy to hear your plan. I am sure God is not throwing this at you to see how much you can handle but how you handle it. It sounds like you are handling it as any leopard wearing, Paris living, Southern California girl would, like a Queen. Please take care of yourself and thanks for updating all of us. You have many many people praying for you.

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  14. Glad to see you are keeping on your merry way....xo Marianne

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  15. You have been tested very severely but your new command centre of Ellie Excellence sounds like just the cure, your physical and mental plans really mean the business. Rooting for you Ellie, be well soon. XOX

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  16. You have an awesome attitude and ALS should really back the hell down because you are winning!

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  17. Have been worried about you and so glad to see you post again. Yes, you are valuable and your life meaningful to all who love you and those of us who only know you through your blog and instagram postings. With the care you're receiving and your fighting spirit you'll come out of this setback. So many of us are rooting for you with all these good vibes going your way. I have received my second piece of blue and white from your shop and am grateful for your selections of such lovely things. Blessings on you and your loving family. Sally

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  18. A bad-ass, hilariously witty woman of great strength to be sure. You rock! Thanks for sharing your moments of anger, frustration & doubt as well as your grit.

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  19. Had to have my own little boo hoo for you, my friend. Keep fighting, please. You are the most incredibly strong woman i have ever known or heard of. Love you.

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  20. Sending you love from your old stomping grounds...and an email...check your Inbox xo

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  21. LINDA LISTEN TO ME, JUST LISTEN!!!!!! I love you!!!❤️❤️❤️❤️❤️❤️

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  22. GOOD GIRL!
    I knew something was up as you had posted on IN the photo inside the church.I thought DAVID had swept you up NORTH to find some new CAREGIVERS.I thought you were on a little VACATION!!!!!!!!!!!!!!Then I have a READER of both our blogs leave me a message you are in the hospital!I immediately jumped to my phone and GOT IN TOUCH with one of your BESTIES.........and she just answered back in less then 5 minutes!!!!!Then I found your NEW POST by scrolling through IN..............SO< I am in the KNOW NOW!YOU can handle this...........ONE QUESTION who's in charge of the animals in PROVENCE?YOU are iN CHARGE and ALL will be FINE.
    I do believe this is YOUR BIRTHDAY MONTH.................DO WE NEED TO SEND FRITOS???TELL US WHAT WILL MAKE YOU SMILE!!!!!!!!!!!!XOXOXO

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    1. LC, I too am a bit worried about Teddy ....

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    2. Yes I am worried too about your animals. Poor Teddy and Valentino - they must miss their mommie.

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  23. I have missed your wonderful blog but am happy to hear that you are fighting this awful disease.
    My prayers are with you wonderful lady,

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  24. I don't think "God is throwing this at you" to see how you handle it... I believe shit happens to good people, period. I kinda despise when people say things like "God Has A Plan".. or "He won't give you what you can't handle". No, I don't believe that for a second. If there is a God, and he's as kind a soul as we are led to believe, he can't possibly have a plan or good reason for some of the horrible and unfair human suffering in the world. I'm sure you have days when you think you absolutely cannot fucking handle it. What I do believe, is the power of the human spirit. You clearly possess a very powerful one, and a grace and strength not all possess. I wish you the best and send healing prayers your way as you take this month to recover from the setbacks and heal. YOU know you better than anyone else. You go girl.

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    1. My sentiments exactly, KA.
      bonnie in provence

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    2. Finally! Somebody telling the truth. I feel exactly like you Karen Ann.

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    3. I agree, Ellie I am praying for you, as a fellow Aries we stick together, beat this mother f@@king disease
      Kris in Seattle

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    4. Wholeheartedly agree with you, Karen Ann. And sometimes what happens to us is just fucked up bullshit. Ellie, you are my hero and you inspire me to stay strong and keep going when I think I can't handle one more thing. Thank you so much for that! You and your writing are such a blessing. You have devised a terrific plan and you have lots of love and support from so many people. Sending prayers and healing energy.
      Marilyn in Lacey

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  25. I was trying to figure out how to make hearts via typing but cannot. However let's pretend these are shooting stars ****************.
    Laura

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  26. First of all I would personally make you the best guacamole in the world. Bring it to you everyday. Now I can't wait to here how you completely change the Plaliative care place into your own salon! They will not know what hit them. You go girl!
    Here's my recipe for the best guacamole in the world. Comes from an L A Girl who knows. http://www.apartfrommyart.com/the-worlds-best-guacamole-recipe-ever/

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  27. You are my hero. Sending every morsel of good energy your way.

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  28. Heather C. is in Paris, I hope she stops by to cheer you up! Maybe you need to return to Paris to live. The taste of provence is bittersweet. Healthwise you were excellent in the city. If you are going to fight you need to be where you have the best chance! I am going to light a candle for you at my church. It's Catholic also and we use battery powered lights. I don't know of any church burning because we lit votive candles for loved ones! xoxo Judi

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  29. I have never commented here so I don't know how to do it. Will do it by anonymous.... I have been reading your blog for years and following you in IG account. I thought you had a good life in Paris , everything more or less in control, the hospital close by, the paramedics one call away, you had a lovely life there.......and when you moved to Provence i thought of all the things that could go wrong and they were more or less the ones that did go wrong. I was worried about the caretakers and you having a good hospital near for emergencies. Please take care of yourself. Living in dreamy Provence maybe is not right for you. What are your thoughts after getting better ? Because you are getting .better....do you still have the apt in Paris ? And the dogs and cat !!! Hope they are in good hands. They must be missing you so much. I am sending you much love! Tons of positive energy and prayers by the dozen. Something will work out . Jaja. Excuse my english , as you can see it is not my first language. Fight my desr Ellie.

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  30. Oh no! I sent the message as anonymous but at least i wanted to sign my name. It is Rosemarie. From Ecuador.

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  31. Don't feel bad about the kinesiologist not returning your calls. I live in the country too in the U.S. Service people not returning calls or not showing up is the status quo in the countryside as I've found out.

    The question is, can you get the care you need in Provence?

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  32. It sounds like you really know what sort of nutrition and therapies you need to do. You might have more knowledge of that side of it than any single doctor at this point. Great. Please take care of yourself. Post when you can. We need to know how you're doing because we care. So glad to hear you're feeling spunky and going to fight this crap!!
    Been thinking of you.
    Sheila in Port Townsend

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  33. Ellie, you are one brave gal. I'm glad to hear you are still in a fighting mode. From the first when I began reading your blog, I was hooked. Was it the connection to Missouri or the similar tastes in things I love. More than that you have really been put on my heart for prayer for your healing. Is it possible. Most certainly. I'd like to share more but not with everyone. If that would be possible that would be great. I think in this journey I'm on it was not an accident I came across your blog and I'm being brave in sending this. Hey brave comes in all sizes. Anonymous, not really, I'm Cherry.

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  34. The image of elephant balls breaking the camel's back made me laugh out loud. Keep fighting . . . we all are so thankful you are. My husband has always told me I have the "oddest collection" of people in my life and I thought about it for awhile and he is right! But, I don't like my odd friends just because they are odd, for odd's sake, I like them because they are brave. I believe brave people are sent specifically by God to show us all the meaning of love.

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  35. Raining cats and dogs here in your former 'hood'...but I am stopping by the Church of the Good Shepherd in Beverly Hills later this afternoon to offer up some (instructions) prayers to God to restore you, and to light a candle. You will be alright, Ellie. Absolutely no doubt. XOXO , Nancy

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    1. I have lit a large devotional candle and am placing prayers for you in His healing mercies. May you feel His sweet presence, His love, His comfort, strength and peace. You have much more to share, Ellie love, and we are all holding you up in prayer, so keep fighting and continue to make the profound
      difference you have made in our lives. You are the only one who can use the f
      word without making me wince....only laughter, bless you.

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    2. I will continue to keep you in my thoughts and prayers as you fight your way through this situation. Selfishly I hope that you stay in Paris where you can be best taken care of. Stay resolute, my friend. Hugs and love always.

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  36. You are truly amazing and inspirational in every way possible....I wish I could come and see you in your new but very temporary abode and catch a glance of all the people you are currently awing! Sending you love always xx jane

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  37. Hi Ellie, I need to tell you something. On Monday my bright, beautiful, funny and clever 10 year old son was diagnosed with a variant of lymphoma. He is in the ICU at the moment and has started chemo, today day 3. We live in Hong Kong and are far away from family and best friends. The past few days have been the lowest of the low and but as a long long term reader of your blog (I have only commented once before) I have to let you know you have given me strength this past week when I felt like the ground was falling from under my feet. I think about the strength you have shown when up against the wall on previous occasions. I think of your positive attitude. I think about your determination to overcome the odds and the way you do it with the very best of humor and attitude. And I take inspiration from all of that. Like another person said above, I don't really believe in God's great plan either. But I want you to know that your words and experiences have helped to get me through the worst week of my life. And I am so so grateful. Sx

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    1. Dear S It's so difficult and terrifying to have a child sick with a serious illness. To have it happen when you're far from loving support is doubly hard. All my best wishes for your little guy and for you too. Deborah in Vancouver

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  38. You are the best. What a scary setback...make the very most of the "spa" this month and don't worry about us!

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  39. You are an amazing lady!!! I am praying for you and your caregivers, because you are going to blow their minds with your positive fighting spirit!!! I've admired your strength for some time and my friends and I are so happy that you are in our lives. Keep fighting, my friend!!!
    P.S. Every Palliative Care Center needs an great Antique Store! XO, Laura

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  40. Thank you Ellie -- for your example, your humor, your fight. Keep fighting! Keep being so perfectly, beautifully you!! Sending you much love --
    Susan

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  41. Sending all the qi I can muster from here in California. Palliative care, says Atul Gawande, is just the thing for living. Make all the choices and decisions that are right for you. <3

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  42. Fight like hell, Ellie. The world is a better place with you in it, and I'm praying for you to find your mojo again, physically and mentally. Sounds like you've got a kickass plan and you're on your way. My wonderful sister-in-law sent me an Elizabeth Gilbert quote earlier this week that I loved: "The women whom I love and admire for their strength and grace did not get that way because shit worked out. They got that way because shit went wrong, and they handled it. They handled it in a thousand different ways on a thousand different days, but they handled it. Those women are my superheroes." You are a superhero.

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  43. I know it's silly, but when I got to the end of your blog I said (to myself) "You go, girl!" Now that's not how I would really say it out loud but it was my instant reaction to your show of strength and resolve. You are a fighter and you are obviously not done with living yet. I'll be looking forward to your honest and humorous updates.

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  44. Ellie, you are awesome. Really awesome. I love your writing so much. You inspire me to get off my ass and be more, be better. You rock!

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  45. Love you girl keep fighting....

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  46. Sending you love and best wishes through our 30 degree Celsius heatwave, which is Autumn in super sunny Sydney Aust. Thankful that you are auctioning all that you need & fighting like you do. Den xxx

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  47. Sending my love and best wishes for a prompt recovery from this little setback. Stay strong (I know I am talking to the PERSONIFICATION of strength!) and feel ALL OF THE LOVE being sent YOUR way!!! PLEASE keep us all posted! PLEASE!!!! Love always, Gloria

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  48. Ellie, I just KNEW something was wrong. Thanks for letting us know as soon as you could. You are certainly in my prayers! I believe that life deals us bullshit for all our days on Earth, but it is 'Dude' who helps us get through it. I have ranted and raved at Him often and it is OK....He can take it! Thank you for inspiring us and sharing with such honesty. I can only pray if I were in your position I would be as strong and determined as you are.

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  49. Of course you will fight for life! You have so much to live for. Stay strong Ellie! I'm sending you healing energy and prayers. Have to tackle this from all spiritual means. Whatever it takes to get you better!!!

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  50. You go kick some ASS and make that place your bitch!! I think you are beyond fabulous!!

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  51. Please stay in Paris. You need your husband coming home every night and being with you and your daughter close by. Provence is too isolating. You need a good shouting match with your French husband on a regular basis to keep you spunky. It sounds like you are in good hands now and are the road back to that sassy girl we all enjoy hearing from every week.
    Judith

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  52. I am sending all my love, prayers and mojo from the other side of the world straight to you, beautiful woman. There are so many of us who think of you everyday and who have never commented (like me) but love you like a sister. Bon Courage, dear sister, you are much loved xxxxx

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  53. and God answered your prayer. Keep looking at the light not the dark and all will be well. I will be praying for you and your family. ♡

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  54. Dearest Ellie, you are in my thoughts and I am sending support in every one of them. I hope you are soon reunited with David, Gracie, Teddy, Valentine and Iris. You're not finished here yet.

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  55. All you can do is fight, is there any other option? I think not. Breakdown of the care routines and meds is clearly not good. You will have to struggle to get back where you were, but its surely possible. I blame your caregivers who quit because they didn't like Provence and the pets. They should have been responsible enough to provide a good transition, and you would not be in this situation. In the US (my home country) we would sue their asses off!!!
    bonnie still in provence

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  56. Keep fighting the good fight Ellie! xoxo

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  57. I believe you can overcome ALS. Please continue to research. You're already at a tremendous advantage due to your incredible spirit, strength, and bravery. You're in my thoughts and prayers.

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  58. Dear Ellie: I am praying for you. Sending you strength and positive energy. With all my heart I hope you rise above and stun the world with the miracle of healing what ails you. Be well, brave and beautiful Ellie. xoxoxo Elena

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  59. Dearest Ellie, we need more information regarding the caregiver with the elephantiasis balls. Lol P.S. I completely adore you

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  60. Dear Ellie, sending love, prayers and healing thoughts your way. Just show 'em what you're made of! ❤️���� best wishes Lilian.

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  61. Oh Boy!! Yes, S__t does happen and usually all at once. Fight on, you are a beacon of light. Sending love and prayers and more love. Your spirit will tell you what you are to do and how to heal. xoxo Mary

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  62. Ellie, you're always on my mind.
    Been praying for you ever since I discovered your blog.
    leso in Sweden.

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  63. Dear Ellie, you will fight this last bump on the road and you will win because you are a fighter and because so many of us rely on you and need you. Oh and I am sorry, remember I am the selfish one, and I am going through a lot of shit, you have been there for me and I need you so you are absolutely not checking out any time soon!
    Life can be so hard but you make it look easy even when we all know that it is not, your grace and kindness is an inspiration to all of us. You gave me quite a scare but I knew that you would pull through because it is not your time.
    I am not a believer, but on Tuesday I walked over to my neighborhood church, St Jude, and I knelt and I prayed to whatever is higher than us for you and I lit a candle, and I asked for protection and light for you because you make this world a better place and we will not lose you. So, you are not going anywhere, remember that I am going to see you in June and you could not possibly ruin my trip by not being there. Thank you Ellie for being you, for showing me that with all the hurt and disappointment that I have had in my life as of late there are still kind, honorable and giving people in this world. I love you girlfriend xoxoxoxoxo Lourdes

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  64. Ellie, sending you all the best wishes possible, get stronger and get well. You are a force of nature and an inspiration to me.

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  65. Ellie, we are all so proud of you. YOU ARE OUR HERO. We will pray for all of you, you will get through this.
    Mary, Columbus, Ohio

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  66. I don't know you, yet, I do. You are a force to be reckoned with, thank God! I am so incredibly proud of, and, inspired by you. I believe that God chose you, hand picked, knowing your strength and ability to lift others that are fighting similar battes. You have done so, so much more, for all of us, than you could ever imagine. Again, I don't know you...but, I love you...as you would say, I fucking love you! Wishing you love, peace and great improvement, as you begin your new and carefully planned regimine.. ...❌⭕️❤️⭕️❌

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  67. You're my here too! Thinking of you and sending you lots of love & light XO

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  68. Praying for you to recover your energy. We all love your strength and love of life. Xoxo Vicki

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  69. Well I know it wasn't in your grand plan....but I feel the knots in my stomach relaxing a bit knowing you are safe and are appropriately cared for in Paris. The idea of you being taken care of by some ball-scratching and dog-hating person in Provence had me on edge. I wish I were there to fuel you up with a green/amino/oil/health concoction to throw back with your guacamole. Instead from afar I send you hugs, love, and positive thoughts and wish you a smooth return to "health" (that being all relative in your situation but you know what I mean!) Kiawah Cindy (PS I had to cancel my spring trip to Provence. Obviously our lunch was not meant to happen now, we will do it later.)

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  70. Life is tough my friend - but so are you! Here's to the fighters - survivors - the believers - the overcomers! You are surrounded by extraordinary love! Cathleen

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  71. Bonjour Darling ~ absolutely whatever it takes, flowers, chocolats, lamps, (hate flourescent tub lights in these bland places that are suppose to help healing) pedicurist, massage therapisits, music, favorite room stray, (hard to have candles with oxygen that is for sure) forge head! YOU are my champion and give all of us WILL and WILL you've got! And yes, what a difference a day makes, and as my mom would tell me, "Sleep on it" for tomorrow is another day and POOF what a difference a day makes! (ps sent you an email too) TOUCHE" we are all fighting with you here.....XOXO

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  72. sending you best wishes and prayers from California. You have read this many many times, but you are an incredible woman, who is showing us all what the human spirit is capable of doing. I will be keeping you in my thoughts..

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  73. So many platitudes could be written,but,you lift my spirits with every single one of your blogs. Honest. Wishing you continued strength, a stronger belief in yourself, and the knowledge that you are loved (from what you have said, and from what others have written). My motto : there is something, no matter how small, that is wonderful every days.

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  74. What a relief to get your blog today. I knew through three grapevine that you were in the hospital in Paris and sending all the MOJO I can and will continue to muster. You are our national treasure and I sm so glad that are kicking ass and taking no names! We are all behind you!! LOVE, LOVE , LOVE YOU!!!

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  75. Inspiring. Wishing you the best

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  76. Please let me be the first to punch the next person who tells you everything happens for a reason. I'm sorry you're going through this and I wish you peace.

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    1. Absolutly !!
      Stay strong Ellie!

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    2. Please please let me the second to punch the next person in the face that says this is happening for a reason! And then let me punch their friends and family in the nose too! Idiots are usually surrounded by idiots!!! Dig in and fight back!! You can do this!!!!

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  77. We love you---I love you--and as weird as that might sound, I know you understand. I hope you feel ALL the love, care, concern and good thoughts coming your way. You have guts---and that is what is needed here---and you have it in spades. I pray every day that you feel better, stronger, safe and hopeful about getting home. I know you will find the perks where you are, and will guide the staff into new ways of looking at care!! Flowers,chocolate,yummy good, the right meds, your Gracie and David--mom, sister, friends you know and have never met--feel the love--we ain't giving up and we NEED YOU!! Rock on Beautiful.

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  78. Thanks Ellie for posting xx

    You are dealing with so much (wtf caregivers??) and have the energy and love to share with us what's happening. I'm gutted by the fact that carelessness and outright dumbass people have gotten in the way of your fight for health.

    I know Odorantes flowers will cheer you up because I follow them on instagram and their arrangements are ethereal !!!!! By the way... you did a post a long time ago on flower schools, which made me sign up for Brooklyn's "little flower school" and I will be taking my third class with them soon. thank YOU for the best recommendation because it's changed how I look at flowers. xx sending you love from new york

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  79. Keep going Ellie, you are such an inspiration to us all!! Hugs and kisses!!

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  80. "When you are going through something hard and wonder where God is...remember, the teacher is always quiet during a test"
    You are a champion to all! Keep fighting ~

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  81. Dear Ellie, I am so sorry to hear this news. You are a woman of such incredible strength and know all of the best things to do for YOU in these awful circumstances. As you can see, your friends are all here for you in the only way many of us we can be, sending our love and prayers across the miles.

    xoxo
    Karena
    The Arts by Karena

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  82. Dearest Ellie,
    You are so amazing and brave and such a beautiful soul! I've had too many of my own health issues this last year to write, but I think of you every single day, to send you love and also because you are my role model. Whenever I have another painful procedure I think about you and your courage and determination to love life no matter what and that gives me the strength to take another breath and go on and love my life too, no matter what. Thank you so much for everything you've given me.
    Much love
    XXOO,
    Sabrina in Port Townsend

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  83. And I think I have it rough. It puts everything in perspective. You are inspiring. Be well

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  84. So I read this last night and didn't know what to say. I had also been enjoying a steady stream of g&ts throughout the night, so I didn't have much of coherence to say to anyone. Save for a nonsensical political debate. But I was still thinking about it this morning and saw a crystal clear wonderful thing about this difficult story and time for you. I also had a headache. The move to Provence was a big, bold step. Something you did to improve your quality of life and most importantly, feed a hungry part of your soul. Even if it's no longer viable to live there, nothing changes the fact that you did it. Every year, I write a looooong thank you note to my grandpa. It's more of a love letter/manifesto than a "thanks for the Christmas cash ur the coolest". This year, with the passing of my grandmother my thoughts were all turned to legacy. What was hers, what will his be, will mine be anything other than making the world a fatter, drunker place?
    Your move to Provence, your attitude in the eliptical (I'm not going to scroll back up to check what the real word is) center, your commitment to your book are all footnotes in the message that is your legacy. Even with the cruelest physical barriers, you don't let anything block your path forward. You've inspired me tremendously, as well as countless others. I'm sure for every comment like mine there are dozens or hundreds of others carrying it too. You're a force of nature and you've made a difference. Hallelujah and holy shit! Keep fighting, you will win.
    Of course, getting back to me...I made lemon bars last week because I did kind of a retro fish fry. And what's a more churchy dessert than lemon bars? They were good but way too lemony for everyone except me. But I was still feeling the bar idea yesterday so I made apple pie bars. I diced a few apples really finely, made a quick apple jam, put them on top of a shortbread crust and then topped the whole thing with a spiced custard. Oh my god. Stay alive until you try them. Fuck I have to go I think I literally just watched a robbery at the daycare next to the salon. I can't tell if it was a feminine man or a husky lesbian who ran out (no kids there as it's Saturday). Actually it appears to just have been a janitor accidentally setting off the alarm. That or our over-equipped suburban police are asleep.

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    1. Fabulous message Stephen Andrew! It's so hard to find the right words to say when something bad happens - but you have a great heart and a great talent. Miss your blog - hope you find your way back there soon too.
      Best wishes, Ellie. You have an unsinkable spirit and willpower. Hope this month does wonders for your health. Pammie

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    2. Ellie, you got SAJ to write one of his famous reports/retorts/essays...what have you. Thank you for that. I tried posting last night but I must always do something wrong because my comments go astray. Last night, tonight and always I am sending love, peace, and healing prayers to you.

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    3. Your salon is next to a daycare? We've been friends for this long and now is the 1st I hear of this???

      Pls get over your flying fears and pop over to Paris and do her hair.

      You know that's a blog post we all want to read xxxxx

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    4. Ellie, What can I say that everyone else hasn't already said? I'm so sad you had to leave Provence, but am relieved to know you're in good hands again, and in Paris with David and Gracie. The palliative care staff will be under your spell in no time...

      Isla and SAJ, I think we need to start some serious twirling to send lots of good energy Ellie's way! I'm planning on every morning at sunrise - here on the east coast that will be about 7:20am now that we're into Daylight Savings Time. Spread the word, please?

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  85. I have just lit a candle for you. Your strength and fortitude sustains your friends and
    blog followers. I love the image of you in your palliative are center "office" surrounded by family, flowers and chocolate, writing your book, selling your beautiful items and giving everyone hell. I am just one of legions of women who admire you.

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  86. Thank you for taking the time to post an update. I was worried. Sending good thoughts and wishes your way. BIG hugs. Suz from Vancouver

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  87. You have a great plan, the strength of an army (and surrounded by your loving troops ;-) and know how to rally great care….and a load of good wishes and prayers with you. Go Ellie! Keep on the mend, Sugar!

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  88. Keep fighting the good fight; the world needs you. Your family needs you, and so do I. Love and prayers, Tina

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  89. Sending prayers and love to you from Salt Lake City, Utah. Keep fighting! We need your wisdom, wit and inspiration! Love and warm hugs. xxoo

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  90. a little one for ya LOVE girl: Darkness deserves gratitude. It is the alleluia point at which we learn to understand that all growth does not take place in the sunlight. (credit to: (www.gratefulness.org)

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  91. PS I see Yolanda found my dear Dr. Klinghardt...he works with a Dr. I use to work for here in Florida. Dr. Doug comes in from Palm Beach....Dr. Klinghardt is king of Lyme's...sweet sweet sweet too.....XOXO

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  92. You are STRONG..You are WOMAN...You are SUPERWOMAN!!!!!!!!!!!!!!!!!!

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  93. Dear Ellie,
    You are brave. You are strong. You are loved.

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  94. Carrying thoughts of you in my heart every day, funny girl. I am sure that the posse in the palliative care center had no idea how full life could be until you arrived! Keep up the drill and continue to keep us posted from the "office." Sending you the love of the universe. Jane

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  95. I want to shout FuckingA! but I don't want your international coterie of family and friends to think that all Americans are as crass as the ones who are currently displaying a lower common denominator than previously thought possible. So to bring up another of your meaningful qualities that has not been stated in this long list of deserved hosannahs and hallelujahs: you make the rest of us look good. You've got all the attributes of great American women - a natural grace, an open heart, a fiery intelligence, the handsome looks of California's best, a marvelous sense of humor, and perhaps, the greatest gift of all - a strong sense of the ridiculous. You can have this month to heal, Ellie, but know we all need you back post haste. Ride on the waves of love....

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  96. Prayers for you Ellie. A million prayers. Get well, we will be with you giving you all of the support that strangers spread around the world can possibly give. You are one of a kind, truly a hero. - Sherry

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  97. Wishing for a quick return to your usual feisty and vibrant self. By the way, how ARE you doing this blog at such a fraught time? You are toooooo amazing.
    Want to thank you for the mention of the "How Not To Die" book. Have tried to get my husband, the chef, to change our eating/diet habits for years without success. He's now reading this voraciously, totally into it, and we're changing EVERYTHING. A huge thanks to you!!!

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  98. Your spirit is amazing. This blog has given me so many gifts. I have learned a great many things from you. I feel like you are a close friend and to think we have never met is amusing. I have personally been through some very difficult times in the past few years. I have learned that every excruciatingly painful experience I have had has left me with a gift. It takes awhile sometime to know what that gift actually is. You will find yours. I know it. Much love and healing coming your way. You are a fighter. Looking forward to your next blog entry!

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  99. Elle, just know how much you are loved throughout the world! Sending prayers and healing energy to you and love and strength to your family!
    Karen

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  100. ATTA GIRL, ELLIE!!! stay strong my belle.....

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  101. Ellie - Your attitude puts mine to shame! Get your strength back and continue to inspire all of us who love you and your writing.
    xpxp
    Joanne

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  102. I am also a follower who has never commented but am so moved by your strength and am in love with your wit and attitude! Keep on drinking that green stuff and smelling the flowers. Carolyn from Seattle

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  103. Ellie, where do you come from as you cannot possibly have been born to mere mortals? There is a super-human quality to you that defies nature! I cannot even articulate the thoughts swirling in my head at this moment, and will suffice to say that your exceptional, amazing collection of followers on this blog have said it all, and said it best. I will, however, take a moment and be selfish in saying that I hope you return to living in Paris (a pet friendly abode of course) where you can have the best of care......and everything else!

    Marilyn in California

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  104. God bless and keep you in the palm of His hand. Family and pets are also in His care. Be brave. Keep your faith.Francophile in Wyomissing.

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  105. I love your blog, your fighting spirit and especially your sense of humour. Sending healing thoughts, prayers, and glowing candles your way. Thanks for letting us know. Jill from Vancouver

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  106. I believe God feels your suffering and is suffering with you. Keep the fire and energy "to thrive".
    I'm praying for you.

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  107. Thinking of you Ellie and admiring your tenacity, humor and resilient spirit. Love from San Diego, Sylvia

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  108. Houston, I am sure 100% your mission is going to ok! ❤️ Il n'y a aucune raison! Courage!!

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  109. Ellie, your courage is such an inspiration to me. And to quote you from a prior post, Bon Courage! Love from North Carolina, Lisa

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  110. I cannot believe they carted you through a window! Get well soon, now is the time for Guts xxxx

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  111. Ellie, you change people's lives. I'm serious. Each of us live our lives without really noticing what effect we have on others--often we don't even realize we have had any effect. I love the imagery of dropping a pebble into the pond and never knowing where the ripple stops. But because of your ALS and your openness about sharing it (and your adorable personality), your ripple has no signs of stopping any time soon. And we are all so blessed because of that. The truth? I save my favorite posts of yours and show them to people when they are whining about life's unimportant things. Your post about David insisting you get a bath and Mr Dreamy inspecting you for diaper rash is my fave. How can one whine about stupid stuff when they are faced with that? And the post about your feeding tube and the French hospital and then finally winding up at the American Hospital?--kinda' puts life in perspective for the rest of us. You're just being hilarious, charming Ellie, but you are giving so much more than that to your readers and I am so so relieved you've chosen to keep up the fight. I'll say my prayers for you!

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  112. Chère Ellie, some of us who read, comment, and the others hold you firmly in their hearts, too! I am somewhere in between, sending you these few words which are backed by enormous admiration and love.

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  113. Ellie, indeed, "Houston, we have a problem" is certainly appropos, but just like the astronauts aboard Apollo 13 having had to abort their moon landing because of "limited power, loss of cabin heat, shortage of potable water, and having to jury-rig the carbon dioxide removal system," the crew returned safely to earth...in your case, safely again into the arms of your daughter and husband, your furry children, your family and intimate friends, and also to all of those multitude of friends of yours, like me, you've made via "Have Some Decorum." We obviously love your taste, your style, your obvious intelligence...but also your incorrigibility (dropping the F-bomb where no other word could possibly suffice and we, your heartfelt compatriots, agree) your humor, but also your very obvious humanity and loving heart. Ellie, my dear, knowing I'm placing yet another burden upon your delicate shoulders; nevertheless, you owe it to all of those who know and love you directly...and to all those of us you may not know directly, but who feel they've come to know and love you; whose hearts would be nearly as broken if you decided to give up the good fight. I see Stephen Hawkings, a refugee and survivor of ALS, as Ellie, you no doubt already know, to the age now of 74 when they told him, when diagnosed at age 21, he'd be dead by 25. My beloved daughter was diagnosed with end-stage leukemia at age 6, that she wouldn't last the week, but we never gave up hope and sought the best treatment possible for her. She is now 46 years old, extremely happily married, the mother of fraternal boy and girl twins, now 18 years old. Though I'm not "a religious believer," per se, I am a believer in the power of dedicated physicians, and science, and sometimes the sheer power of the individual and collective human spirit. Please, please, please "keep on truckin' Ellie." I re-read your post "Yes, I'm Irish," tonight. I was born in Australia of a native Australian mother, native Australian grandmother of French descent, and my father, an American of Polish/German descent. I just received the results of my Ancestry.com DNA testing and found that I have 48 percent Irish heritage. So, for this St. Patrick's Day, I can finally celebrate the day not feeling a fake participant.

    Patricia Wilson
    Columbia, CT

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  114. Sending love and positive vibes your way. I wish I had a magic wand. Kathy xx

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  115. You are such a brave, courageous, spirited and strong woman. We are all rooting for you! From across the globe, we have you in our hearts, thoughts and prayers.xxx

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  116. My god Ellie you are so inspirational!
    Best wishes!

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  117. Sometimes one has to test the limits of physical being. You did that with the Provence move; no shame in that at all. It's part of what it means to be human and alive, and you are still very alive, although at the moment you feel like well seasoned kitty litter.

    You've now formulated a plan to address the kitty litter thing, and it's a good one. So it's five steps back and one slow step forward, but you are moving forward again. The arc of life is now bending as it should: upward.

    Kind of like a Weight Watchers thang: it's not as important that the weight line is plummeting as it is to have it trending in the desired direction.

    Sending prayers and booster thoughts of strength.

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  118. Oh ellie my heart hurts for you...I wish I lived there so I could visit and help...keep fighting babe....you are always in my thoughts..xoxo

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  119. Do whatever they say you must do at the Palliative Care Center unless they recommend that you stop blogging! We need your bitchy and beautiful posts. It's the only respite we have from the ugliness of the presidential campaigns in the United States. So, please drink your green smoothies, take your vitamins, get rested and...post.
    We love you! You're the best blogger in the universe, and your antique sales are fabulous, too! Sending love from Pittsburgh, Robbi

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  120. Dang you are a gutsy Lady! Sending the good vibes to you and family.

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  121. I wrote a comment two days ago, I don't know where it went. Everyone else's comments have said it all, so I'll just say Bon Courage! Did I say it right? Hope your Teddy and Iris are ok, too.

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  122. What words can I write to offer you comfort and provide you with encouragement? I am at a loss. Just know you are in the thoughts and prayer of sooooo many... including me. Hang in there!
    Bon Courage et Bisous,
    Michelle from Santa Barbara

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  123. Girl, get your Irish up!!!!!!! Fight, fight, fight!!!!!!!

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  124. Ellie, I've been reading your blog for 2 years, and so often, your posts bring me the strength and the humor I need to get through difficult patches in my own life. I've never commented before, but I want to today so you know I'm sending you all the healing vibes I can muster from NYC! Thank you for all you do.

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  125. Hi Ellie, your blog has really helped me, as well as entertained me, these past few years, and I had actually done an email search on Friday since I hadn't seen anything posted in a while. I am sending positive thoughts your way, plus a few $$ for flowers since they make any situation better! XXOO

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  126. All of the loves and all of the fortitude, you remarkable girl xoxoxo

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  127. I would have been saying "what the fuck?" myself! Sending love, good and healing thoughts, and lots and lots of prayers your way.

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  128. sending you prayers and an email.

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  129. We're all with you Ellie. You rock it! We love you! You show us all what inspiration is. I hope you are surrounded by beautiful flowers, delicious candies and loving hearts.

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  130. Dearest Readers, Friends, and Supporters of Ellie,

    Ellie's friend, Yolanda Foster, is starting a critical fund raiser. Insurance in France covers a fraction of Ellie's expenses. She has spent hundreds of thousands of dollars on basic essentials to survive. NOW IS THE TIME TO HELP THE GAL WE ALL KNOW AND LOVE. Honestly, no amount is too small. Your donation could be paying for 1 can of her liquid formula. Don't think you can't make a difference, simply not true. Ellie depleted her savings to beat the statistics and outlive most ALS patients. She isn't done yet and has a lot she wants to do on this earth. Having the necessary equipment, care, and providers allows her to stay with us.

    WHAT CAN LITTLE OL' YOU DO??? 3 things...

    ---Share this link on all of your social media outlets. If we can get enough people sharing, there is a good chance this will go viral
    https://www.gofundme.com/ellieals

    --Donate any amount you can comfortably give.

    --For those that believe in the power of prayer. Please pray, light a candle, send her positive energy and love.

    I spent the last 2 years off and on with Ellie. She humbly eliminates the nitty gritty when she writes her blogs. As a dear friend and person that loves her more than one can imagine, I challenge each one of you to take less than 5 minutes today to skip a few Starbucks coffees in March and make a donation. She selflessly gives of herself, let's share the love!!! PLEASE PLEASE PLEASE help us spread the word by spreading her story all over social media. Again, the link;

    https://www.gofundme.com/ellieals

    Thank you in advance for helping a beautiful human being!! You can make a difference. Power in numbers!!! Power in prayer!!

    Thank You Thank You Thank You!!!!!
    Debbie Owens

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  131. Dear Ellie, You and your beautiful loved ones have been in my thoughts and heart these last few days. Over these past years you have brought strength to one who has felt vanquished by her own, measurably smaller, burdens. You are a shining light. And it is a light that is bright and clear and warm. Thank you.

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  132. Well, I still haven't made it through all the comments here because each time that I try I end up crying until I can't see. It is kind of a weird cry where I am so happy that you are so loved and yet so furious that you have to be in palliative care - at least you are making it your own, there is no surprise there - at all. And then there is your having to leave Provence. But I am so glad that you tried and that you were there long enough to see that your instinct had been right. I only wish that I had been able to drive myself over. So close, so far. I will be disappointed in that for a long time, even if you would not want me to be. But I am working on it as you know. You keep fighting too. I know that you will.

    I love you so much, beautiful one.
    Keep them on their toes at the Hôtel-Dieu,
    Sending Love and Strength the size of a bright star,
    xo
    h

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  133. Ellie-it is you who sustain us, and with a brilliant, sharp witted, even sharper tongued sense of humor and humanity. You are our teacher and our inspiration. To be able to demonstrate the ephemeral nature of life with such strength of character is a true gift. Wishing you well and hope that you are kicking ass in that palliative care center!

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  134. Dear Ellie, Thank God you're in care. You went through so much recently, what a nightmare. You have wonderful friends and family; you are blessed Ellie. Stay strong, we are all cheering for you!

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  135. I'm so sorry I'm late, but I somehow missed this post. I was just coming to check in as I hadn't seen anything in a while. I'm so sorry you are going through this!! I wish I could make it all go away. I hope you will be able to return to Provence if that is what you wish. I hope your animals are all OK, I worry about them too. Do enjoy the flowers, I dream of Parisian flowers!

    Also, I must tell you the expression "Houston, we have a problem", is a dear one to me. A friend and former co-worker of mine used to say that to me all the time when we worked together at a livestock sale barn. He was the yard manager and I was the office manager. I always gave the yard folks the paperwork for loading out the cattle. Inevitably a cow would jump a fence or a bull would bust down a gate or something and the cattle got mixed between several buyers. My friend would come into the office and say "Houston, we have a problem" trying to figure out what happened and how we could fix it. That was all in the late 90s. He passed away in October of acute pancreatitis at only 67 years old. So it just made me think of him.

    Anyway, thinking of you, sending you all the good vibes I can muster. Spring is coming and renewal is certain. My love xx Valorie

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  136. I am holding space for you sweet girl.

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  137. Dear Ellie, Your spirit is indomitable. Your courage, formidable. You make us Americans proud. Prayers enwrap you from many, many directions, dear strong Ellie!

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  138. Thinking of you and hope you are doing better!!! Xo, Hope

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  139. Kick some ALSass, Ellie. We're rooting for you!
    Jody

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  140. My gmail has been down so I have only just read this blog. I did you know you were in Paris via another blog and prayed everyday that you would rally. I am grateful to hear your strong mind at work. Like everyone else, I find you to be so inspirational.... much love Ellie, I feel empowered by this blog. Ann

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  141. Dear Ellie, I check twice a day to see if you are better and have written something. My thoughts are with you and I hope you are soon back in Provence with your menagerie a trois. Spring is coming...!

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  142. You ARE strong...you ARE invincible.......you are WOMAN ...know that you are loved x

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  143. Dear Ellie, Keep on fighting and keep on keeping on!! My thoughts and prayers are with you. I just found your blog a couple of months ago and it is my favorite. I love your spirit! Much love to you and your family.

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  144. Dear Ellie - thank you for sharing and I will be keeping you in my prayers and agree I would be saying WTF to the man upstairs as well! I would like to have just a pinch of your tenacity and courage...and maybe a few your antiques of course ;)
    Be well xoxo
    Rosemary

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  145. What a lovely message Debbie! I've done all three suggestions. I'm so grateful Ellie has people like you in her life who focus on the important things and know the amazing value of this girl!! Bless you!

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  146. Whatever happens, whatever you decide, whatever your body decides, you got this. xoxo.

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  147. you're strength is amazing. I am praying for you.

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  148. Check in with us Houston, check in.

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  149. A candle is burning for you, dear friend, in Texas. I know you would want to communicate with us if you were able - so things must still be pretty bad. You are an inspiration to me and whenever things don't go as I plan - I think of you and what you are going through and the courage and determination that you possess. I am fighting with you as are many of your friends - and we are wanting you to know how much you mean to us in your fight. Bless Grace and your Dear Husband and family as they fight with you. Give 'Em Hell, dear Ellie.

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  150. How did I miss this post??? Damn!! I wish I was in Paris. I'd come take care of you-no matter what was going on! I am in California and am still trying to get the morons at the FDA and idiots at government level to do something with all the money we have raised for finding a treatment or a cure. This sucks! Keep kicking ass Ellie!!

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  151. You are amazing! Thank you for keeping us close to you. We love you

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  152. Happy Birthday sweet Ellie! Holding you in my heart, Sugar-Pie.
    Auntybelle Cracker

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