Monday, September 13, 2010

National Invisible Illness Week

The theme this year is "Each One Can Reach One". There are so many people who have invisible illnesses. What does having an invisible illness mean? It means that you get told...
"you look great!"
"I can tell you feel better because you look good!"
"I'm so glad you could be here. I'm glad you are finally getting some relief".
While we appreciate that we look good, it's so hard to get people to understand how much we are suffering because we look "normal". Of course I want to look great and love when people tell me I do! But sometimes I wish my illness was visible because maybe people would be more understanding. There are times when my illness is visible because I'm pale, have gray skin, have a PICC line in my arm, or have to use a wheelchair. But most of the time I look normal.
People don't understand how you can look normal but claim to be so sick. Many times you will lose friends because they think you are faking it. Doctors will send you away because you look "okay".
When you finally get up the strength to leave the house because you feel like you've been hit by a truck, the last thing you want to hear is how good you look. We just want someone to validate how bad we feel and how hard we worked just to leave the house. When you look good all the time, people assume you are better and feeling okay. That's not how it works with invisible illnesses and it's so hard to get people to understand how hard it is.
That is what living with an invisible illness means. What is horrible is that there are so many people who suffer silently because people don't believe that they can be so sick and still look "normal". The theme this year is meant to get people to just help one person who suffers. One of the best things you can do for a chronic illness is leave random notes for the person suffering that will make them laugh or tell them that you are behind them 100%.
This questioner came from the invisible illness website.
30 Things You Might Not Know About My Invisible Illness

1. The illness I live with is: Lyme Disease, Fibromyalgia, Babesiosis, Bartonella, Ehrlichiosis, and other infections
2. I was diagnosed with it in the year: 2008
3. But I had symptoms since: 2006
4. The biggest adjustment I’ve had to make is: being taken out of the fun teenage world and thrown into the adult medical world.
5. Most people assume: that if I'm out of the house I feel good. And if I'm having a good day, that means I'm completely better and can do everything again. That's not how it works though.. One step forward, three steps back. When I'm having a "good" day it still means that I might not feel good. A good day for me could be equivalent to a bad day for a normal person.
6. The hardest part about mornings are: waiting for the strong sleep medicine to wear off and dealing with being sick all through the night.
7. My favorite medical TV show is: House
8. A gadget I couldn’t live without is: Itouch and phone. When you're homebound, that's the only way to talk to people sometimes.
9. The hardest part about nights are: being so exhausted and still not being able to sleep from the pain.
10. Each day I take over 20 pills, 2 or more shots, IVs, tons of liquid medicines.
11. Regarding alternative treatments I: completely believe in them. I am on alternative treatment because I can't handle regular treatments.
12. If I had to choose between an invisible illness or visible I would choose: Anything besides Lyme that is so politically split and has no recognition.
13. Regarding working and career: I do school from home. I haven't been to school since November 2008.
14. People would be surprised to know: I secretly laugh when people tell me how strong I am. So you're telling me I'm strong for fighting for my life? I'm just trying live, not be strong. It's something that has to be done and there's no way around it. I also laugh because I'm not strong. My God is strong and through Him I am strong. Only through Him. I do appreciate being told I'm strong, but it's not me, It's Him.

15. The hardest thing to accept about my new reality has been: the unknown and controversy about my disease. We have to make medical decisions because most doctors won't treat me. It's so hard to have a disease that the government says doesn't exist, therefore we have to stay under the radar with it. But that doesn't mean we don't spread awareness. Also, the fact that I spend the majority of my time hooked up to IVs, taking medicine, spending all day at the doctor in the in the hospital.
16. Something I never thought I could do with my illness that I did was: help give others hope.
17. The commercials about my illness: I haven't seen any.
18. Something I really miss doing since I was diagnosed is: Going to school and being a teenager
19. It was really hard to have to give up: Everything. My independence. So much has been taken away.
20. A new hobby I have taken up since my diagnosis is: Trying to spread awareness about this disease. Talking to people and actually listening.
21. If I could have one day of feeling normal again I would: Do normal teenage things with my friends, not worrying about medicine schedules.
22. My illness has taught me: to cherish the small things like being able to get out of bed and walk.
23. Want to know a secret? Even though I hate this disease I wouldn't change anything. I'm so much more aware of my blessings and helping others.
24. I love it when people: visit me or send me a text or message saying they support me.
25. My favorite motto, scripture, quote that gets me through tough times is: "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalm 73:26

26. When someone is diagnosed I’d like to tell them: Do research for yourself and trust God. If you trust Him and His plan you can get through anything.
27. Something that has surprised me about living with an illness is: How many things we take for granted.
28. The nicest thing someone did for me when I wasn’t feeling well was: actually tell me how sick I look. Thank you for validating how horrible I feel.
29. I’m involved with Invisible Illness Week because: I don't want anyone to have to go through what I've gone through.
30. The fact that you read this list makes me feel: very very blessed. I hope you understand how many people are silently hurting. We really can change the world one person at a time.
"Each One Can Reach One"
Thank you for reading and for your support and prayers.
Check out the invisible illness website to see how you can help.
http://invisibleillnessweek.com/

193 comments:

  1. Dear Victoria,

    I will be there for you, I will be that little push in your back that you will need from time to time. Even though you don't know me, that doesn't mean i don't support you. I have no idea how hard it is to live with an invisible disease, but I will do whatever I can to support you <3 You are in my thoughts and prayers <3

    Much love, Angie

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  2. My thoughts are with you. Continue on and do the best you can. Remember that you are surrounded by people that love you.

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  3. Victoria- thanks for sharing your struggles. I know I will be more sensitive with my words and not make assumptions about how people "are."

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  4. I admire your bravery for giving invisible illnesses a face.Keep up the good work, girl! We're a 100% behind you.

    love and hugs!

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  5. I'm sorry to hear you live with daily pain, but it is great that you have your faith to help you through.

    thank you for making this post and helping build awareness!

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  6. Dear Victoria, Please know that I read every word of this post. I was diagnosed with Multiple Sclerosis a year and a half ago. I understand so much of what you're going thru. I don't know you personally but just by reading this post, I am proud of you. I am proud of you for spreading awareness. I'm proud of you for getting up every morning and doing your best to be the person that God wants you to be. We have two choices when we're diagnosed with an illness or encounter trials in our lives...we can either run from it and let it ruin us; or we can learn from it and use it to empower ourselves. You are giving a face to this illness and helping people to understand. You may never know who you touch but God knows. I love the song you have at the top of your blog. That's been my song lately as well. I'm praying for you! You are stronger than you know. May God bless you!

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  7. You're beautiful. Always will be.

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  8. Last year my hubby went to a bible camp here in the UK called Soul Survivor. It was suspected that he had swine flu so we had to go collect him. A few days later both my ankles were swollen and I had a total of 4 bites across both ankles - one day I actually sat at work without my shoes or socks on because the socks were cutting the circulation off. I looked up insect bits on the internet and ended up reading about Lyme's. When I went to the drop in clinic and pointed out that I had Lymes and I needed treatment the Doc ended up having to get a second opinion.

    He then pointed out that he'd only ever seen a textbook case in the UK he's never seen a "live" case neither had his colleague. I was put on anitbiotics and was okay. I felt shattered for about 4 weeks after that and still have days when getting out of bed is a challenge.

    I know my case is nothing compared to yours but I know the feeling of sitting in the Doctors office and them looking at you like you are nuts. I pray that you get better - you should be out there enjoying life not being stuck inside cos you're ill - especially when people say you don't look it.

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  9. My heart goes out to you -- living with something that no one else sees is a horrible burden to bear. I'm thankful for your faith and hope, and pray that you are surrounded by family and friends to help you every day.

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  10. Head up, Doll. We are listening.

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  11. Victoria - my heart goes out to you. I can't imagine how terrible it must have been to have such change in every aspect of your life. I hope that your family and the friends worth keeping are able to support you throughout your invisible illness. Keep up the good work of spreading awareness, and be sure to have some goals for your own future. ::hug::

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  12. Hi Victoria,
    I love the idea of leaving little notes to cheer and encourage! It's the best thing! You are so very not alone!
    Love and Hugs!

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  13. You're an inspiration, love.
    I sincerely hope you get better.

    LOVE YOU

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  14. Victoria,
    “This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.”

    HUGS

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  15. I came here to write something inspiring for you. I leave being awed by your incite. I wish you well, today and in your future.

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  16. "Even though I hate this disease I wouldn't change anything. I'm so much more aware of my blessings and helping others."

    What an amazing thing to say. Your positive outlook through such despair is a blessing.

    You are an amazing woman who has opened my eyes not only to invisible illnesses but to how we truly should be grateful for everything we have, no matter what we may be suffering from.

    You are an amazing woman! I support you!

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  17. I'm glad I read your post. It's a great reminder to always try to see different perspectives. You inspire more people than you know. Thanks! ~Todd

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  18. Dear, sweet girl,

    I am totally blown away by your attitude, our Heavenly Father must have the biggest of grins on his face when he looks at you.

    I was diagnosed with Fibromyalgia a year or so ago and some days I just don't want to bother. I am fortunate in that I can still live a relatively 'normal' life, but I do understand the frustration of people just not 'getting' it. I especially relate to the idea that I good day for me may well equate to a bad day for many people. I remember a work colleague of mine saying I should go home if I felt as unwell as I appeared, to which I replied that if I stayed home every time I felt that way I would hardly ever be in work at all!

    It pales into insignificance compared to your challenges though, dear girl. I am proud of your courageous attitude (the glory does go to God, but permit yourself to bask in the glow of its reflection!) and am utterly blessed to have you as fab little sister in Christ.

    Hugs and prayers to you from the UK.

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  19. Hello,
    I just want you to know that you are a beautiful, courageous woman and though I can't understand what you have to go through, I admire you for taking the time to spread awareness and to continue pushing forward despite all the obstacles you face. I hope that in the future, I will remember I can't always "see" what people are going through, and that's a perfect reason to always remember to love and be kind to everyone. You're inspiring!

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  20. Dear Victoria,
    Your blog is beautiful and wonderful! I am extremely impressed by your writing and designing skills! I COMPLETELY understand everything you have written about living with your invisible illness! Both my sister & I suffer from invisible diseases. I often say that we are the healthiest-looking sick people I've ever seen! It is a huge challenge to live like this - with constant pain, fatigue, worry, sleeplessness, etc. but somehow you WILL make it because your life is important! You have so much to offer the world - I can tell that from reading your blog! Actually, reading your blog gives ME hope! I'm so sad that you don't get all the support you need from other people, from Doctors, friends, etc. I've got the same problem - I go to lots of doctors but they can't find anything that will help. I keep on tho because I still have hope. Victoria, don't give up hope! I'm praying for you!

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  21. Dear Victoria,

    I totally get it. My husband has been living with Lyme since 2006 and there are good days and bad days. Even as a spouse I see how hard it is for him when people just don't get it or think he's able to do things that he isn't. It's even hard for me to remember sometimes. He is 6' 2" and very well built.. so people never really believe how sick he is unless they happen to be visiting him when he's in the hospital.

    We've been through the years of PICC lines, and the shots in his belly, the days and sometimes weeks in the hospital as well as the exorbitant amount of pill bottles surrounding him. (I say "we" because I've been there with him every step of the way and even though I'm not feeling what he's feeling, it hurts me so much to see him in so much pain for so long).

    He's had a headache since October 16, 2006 and regular doctors have told him it's "imaginary", or that he needs to see a shrink or that he just needs a few days rest. It's unreal how little doctors know about this disease!

    It makes me sad to see him not doing so many of the things he used to love to do but now just doesn't have it in him to do them anymore.

    I hope you are in touch with a really good Lyme literate doctor (if you aren't, I know two of the best in the country and am happy to share). Without a doctor who is deeply passionate about this disease and who really knows all the complexities of it... well, I don't think I have to tell you what could happen.

    Please know that there are many people who care for and about you. I'm sure you know that you aren't alone.. there are thousands living with it today and many more will unfortunately be diagnosed with it in the coming years.

    You sound like such a strong young woman and I'm so proud of you for speaking out and telling as many people as you can about this debilitating disease! You really are a Rock Star even if you don't quite feel that way.

    Be Well!
    Cheryl

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  22. Thank you for teaching me something new and touching me today. The world needs more people like you spreading awareness so that we all can live with more compassion. I wish you peace, comfort and love.
    Thanks again,
    Amanda

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  23. You are beautiful. Even though you said that you are not strong, you are. your faith is strong and that it what's keeping you moving. Don't ever lose that. And don't lose the hope that you'll get out of bed on your bad days and get moving. Even though telling you that you're looking good is not what you want to hear, realize that sometimes that's all we know how to say. In our hearts we're saying we love you. <3

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  24. Victoria, Sweetie, you are not alone! I suffer from Trigeminal Neuralgia, which is also an invisible condition....the "worst pain known to man" according to dr.'s and websites. I get "the looks" also when I say how terrible I'm feeling. I am praying for you! Remember, we are here to lift you and give you strength when you're feeling you have none. Blessings, Dear! Stacy

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  25. *huggles*
    Living with an invisible illness is hard; sometimes you'd rather people ask "How are you?" instead of saying "You're looking good today" because they've no idea how hard you're fighting inside.

    I hope more people read your post and understand a bit more about how it feels to live with an invisible illness.

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  26. Dear Victoria -
    You may not feel strong, but you seem strong to me, and it does take some strength to be strong in God. Your fate amazes me, and your writing inspires me. I wish you all the best. May God continue blessing you, now and always.

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  27. Victoria,

    I can't imaging what you're going through, but know that I said a prayer for you today. Thank you for being a shining example of complete reliance on God. You're strength despite your current circumstance is such an inspiration. Remember God is faithful and he love you. I said a prayer for you today.

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  28. Uh-huh. Invisible illness. I think even those of us not technically sick are suffering something at some level or worried about something or in a dangerous situation and so on and whether we are ill or 'well' we could really be a lot kinder to each other when we remember that you never know what is going on under the surface of a person - or what they might be going through.

    If I see someone being rude or angry I tend to think, 'maybe they were just told a friend died or that their wife is leaving them'...... you just never know.

    I hope you know though that there are lots of people out here who are aware that everyone is vulnerable and could do with some loving.

    Here's some lovin' for you sweetheart!

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  29. You are not alone. We are listening, and we are looking beyond the surface to the pain--and beauty--beneath.

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  30. Victoria,

    Your words inspire me. Thank you for sharing.

    Your faith is strong and it sounds like you have a wonderful support system with your family, but know there are others who are supporting you from afar and have admiration for your spirit.

    I feel for your pain, you write it so well that I can understand how hard it is for you. You may not want to be told you are strong, but from what I've read you are. Yes, because you are supported by God, but also because of who YOU are!

    Go forward and spread your inspiration...

    Thank you!!!

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  31. WOW! I honestly didn't know much about Lyme Disease until I looked at your blog. Thank you so much for putting this information and support out there. I am so glad that I'm more aware of Lyme Disease now.

    I am so sorry you have to go through all of this pain. It's not fair, for anyone to have to go through that. I loved when you said that you hate it when people say you're strong. I have brittle bones and everyone is always like "Emily, you're so strong." No... I'm not. My bones break, and you deal with it. What I always try and tell people that when you're dealing with something, anything, just focus on the next step. Sometimes even your next breath. That's what's important. Just keep going, even if it sucks. You are AMAZING at that!

    Keep sharing that love of Christ and hope with the people around you. You're doing awesome despite everything. I'm praying for you and others who have to deal with this!

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  32. Wow, Victoria. I must admit that before I read your post I was one of the more ignorant people about this disease. Thank you for making people more aware about it! I give you my best wishes as you struggle through this. Keep on fighting! You can do it... Life can only get better from here, right?

    We believe in you.

    <33 Much love.

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  33. Victoria,

    Always remember that, while the person who is standing in front of you may not understand, there are lots of people who do, and they support you and send you their best thoughts and wishes. Keep that strong spirit.

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  34. Hey there!

    I know when you've got something going on, people feel compelled to share their story...I'm going to tell you anyway. :)

    I had Lyme from when I was born (got it from mom) until about 11 years old. They didn't figure it out until I was about 3. I went through what you're going through - catheters, drugs, couches, beds, hospitals - the works.

    What I want to tell you, is that now I'm 27, and no spirochetes! Just a few leftovers (rheumatoid arthritis is the main one), and I get bloods done for the 'chetes every month, but it went away!

    Point is, there is hope, beautiful girl. You got it goin' on, so hang in there! The grass is just as green on the other side - it's just less hurty. ;)

    You're in my thoughts!

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  35. You are so admirable and beautiful for being strong and keeping in faith with the blessings and opportunities that God has showered upon you. Stay strong and persevere – you are in my prayers!
    “So do not fear for I am with you, do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” - Isaiah 41:10

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  36. Thank you for sharing your story with us & for being such an inspiration with how you rely on God & give him glory through even such a terrible situation. Sending prayers your way!

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  37. Victoria,

    I am so sorry you are having to deal with so much. The fact that people's insensitive behavior and thoughtless comments are yet another burden you must carry is appalling.

    I am so impressed with your attitude and your outlook. Please know that you are not alone and that you have touched many people.

    Also, I love your blog design it is beautiful and your writing is amazing.

    I will pray that you find real and lasting relief.

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  38. You are not alone! Sending love and blessings to you.....

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  39. Thank you for being so incredibly inspiring. I can only imagine what it must be like for you, living with a disease like Lyme and then still be so positive and have such faith.
    Keep your head up. You are in my thoughts and I hope you. Even if you feel you are only strong through God, to me you really seem like a strong person. God may help you, but in the end you are the one straying strong through all of this.

    Love,

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  40. Sending much love from afar.

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  41. Thank you so much for posting this. Having suffered from Chronic Fatigue Syndrome for 7 years now, I have been told multiple times how well I look and how it's all in my head by friends I hoped would understand. It's really helped knowing I'm not the only one and I hope you can keeping going through it all.

    Best wishes <3

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  42. Victoria,

    Thank you for sharing your story. You rock. Through God all things are possible. You will prevail.

    HUGS,
    Julie

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  43. I love House too!!! Thanks for all the info about invisible illness's it's so important to reach out to others no matter how they look or what is going on. Have a great Thursday, and if I may I'd like to share my favorite poem. It always cheers me up :)
    "I wish I was a glow worm,
    a glow worm's never glum,
    cause how can you be grumpy when the sun shines out your bum!?"

    May the sun shine out all our bums! ;)

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  44. I read your post, and I really think it's ridiculous that people won't believe you're sick! I thought doctors and (especially) friends were people to rely on...
    Even though I've never met you, I believe you and I wish you the best in life!

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  45. LoveBomb!
    “I asked God for strength that I might achieve. I was made weak that I might learn humbly to obey. I asked for health that I might do greater things. I was given infirmity that I might do better things. I asked for riches that I might be happy. I was given poverty that I might be wise. I asked for power that I might have the praise of men. I was given weakness that I might feel the need of God. I asked for all things that I might enjoy life. I was given life that I might enjoy all things. I got nothing that I asked for, but everything I hoped for. Almost despite myself, my unspoken prayers were answered. I am, among all men, most richly blessed.”

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  46. you are truly an inspiration. wanting to help others, even when you're hurting shows a real big, genuine part of your character.
    you are nothing short of fabulous, v.
    don't ever let anyone tell you different. <3

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  47. Dear Victoria, you sharing your insight to your illness has opened my eyes to what I take for granted every day. I have learned from you today, thank you. My thoughts and prayer are with you and wish you daily comfort until you overcome this illness

    Tom

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  48. That was brave of you to share your story!! I think it reminds us all not to take our health for granted. Thank you for being honest! You're an incredible person xxx

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  49. We are behind you 100%. We know how hard you work to feel good and live your life. Keep the faith.

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  50. Love House too :-)

    Hugs from Europe xxx

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  51. http://i117.photobucket.com/albums/o43/Aedammair-Kitsune/II.jpg

    I made you a blog button.

    May the road rise to meet you,
    May the wind be always at your back,
    May the sun shine warm upon your face,
    May the rains fall soft upon your fields,
    And, until we meet again,
    May God hold you in the hollow of His hand.

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  52. Thank you for the reminder that many times, an individual's burdens can't be seen, felt or touched by others. That does not make them any less real. The need for compassion in approaching other human beings is reinforced through your words. Please continue to help us grow through your sharing.

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  53. Good for you for helping to spread awareness! Education is the way to get people to realize what's going on. Double applause to you for working at this when you're so sick!

    Hang in there. Lots of us are out here cheering for you, wishing you the best, and supporting you in your quest to make people see what's going on.

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  54. I hope you get the 'awareness' you deserve. My sister has a form of Lupus, so I understand a little about what you are going through. Hugs your way oxoxoxox

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  55. WOW! You are an amazing soul! Remaining in such a positive place while dealing with the pain and weariness of such a disease is not an easy task. My aunt had lymes and went though much of what you are dealing with. I deal with a vertigo issue, which is nothing compared to what you are going through.
    My prayers go out to you and your family! I am now going to put up a status on my facebook with the link for invisible disease awareness week to help you get the message out! Thank you for sharing with me not only the way you feel but positive things that can be done through awareness. Here is a big ole hug full of hope for you (((((hope)))))

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  56. I prayed for you today!

    You are courageous, strong and AMAZING! Hang in there! I battle with my own invisible illness and it is the most isolated feeling. Thank you for spreading the word about invisible illnesses to others!

    XOXO!

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  57. Hi Victoria,
    Sorry to hear of your struggles but please know that just because something isn't seen doesn't mean it's not real. It's ok to have tough days and we understand. It's also good to have amazing days too and I know you'll appreciate those more than most. Your post was a great illustration of the strength you have- you are inspiring and teaching others.

    I wish you a lot of those amazing days that you deserve.

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  58. I respect and admire you for speaking out about your illness. May you have days of greater respect and appreciation ahead because of the great person you are fighting such a strong daily battle.

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  59. Dear Victoria,

    thank you for writing this post and reminding me to invisible diseases like yours. It was an honour to read it and to learn a bit about you.
    Please know that I'm thinking of you.

    Love, Inge

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  60. Victoria, you are a truly courageous and generous soul to face the battles before you and share your thoughts and feelings with us. Thank you! Please know that I am thinking of you, and sending love and white light your way, to be used however you most need it.

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  61. If your goal is to raise awareness, you just raised mine. I had a friend with Lyme disease, and she quietly suffered, like you, and not until reading your comments did I realize how much she was really going through. I'm wishing you a heart full of peace and comfort. Thanks for all you're doing.

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  62. Hi Victoria,

    What a great site, I really appreciated being able to understand a bit more about invisible illnesses through what you have written. I know you said you aren't strong and maybe it feels that way - but it sounds to me like you are an awesome person and you deserve to know that. You are an inspiration and I feel privileged to have learnt something about you today...

    Know that I am behind you 100%

    With much love

    Kate

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  63. Dear Victoria,
    My heart goes out to you. I am praying for you today, knowing that you are a loving child of God. As such, He is forever watching over you. God Bless You!
    Love, Cathy

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  64. just found your blog, very interesting post! i know what you mean about people trying to compliment you by telling you that you are strong...like you have a choice? anyway, i am from a place where lyme disease is very common and from what i understand, highly under-diagnosed. many people go decades deteriorating, thinking they have MS, so I think it is great that you had good enough doctors to properly diagnose your disease!!

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  65. VICTORIA: YOUR NAME MEANS VICTORY. YOU ARE A CHILD OF GOD AND MAY YOU BE EMBRACED IN HIS ARMS AND MAY HE KEEP YOU IN THE PALM OF HIS HANDS. THERE ARE SO MANY PEOPLE THAT DON'T APPRECIATE WHAT IT MEANS TO BE HEALTHY...
    WE ARE LIVING MIRACLES AND WE DON'T REALIZE IT. YOU ARE UNIQUE AND YOU WILL BE VICTORIOS OVER THIS SMALL ROCK ON YOUR PATH. YOU ARE IN GOOD HANDS, NEVER DOUBT THIS.GOD BLESS YOU AND YOUR FAMILY

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  66. I don't have an invisible illness but I can understand your feelings. I was born with Spina Bifida and have been a wheelchair user for 16 years. In May, I began having intense back pain. At first, my mom didn't believe me. She finally realized there WAS a problem when I couldn't get out of bed. The Dr. suggested pain management because he said further surgery could paralyze me (I'm not now). The previous one already put me in a wheelchair and I didn't want to lose any more function.

    Sorry for the novel. lol! I just wanted to let you know that I understand. Just because I'm not crying in pain, doesn't mean that I'm not IN pain. I'm taking medication that makes it less intense, but it'll always be there. It's just something that we have to deal with.

    I hope your illness gets the recognition it deserves and that someday you'll feel 'normal' again. Please know that there are people who care and hope that you'll stay positive and have faith.

    (((HUGS)))

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  67. Victoria,
    I admire your strength to suffer through and to go to the doctors/ to just move. I don't know that I would be as strong as you. <3 I think doctor's really need to LISTEN to their patients just a bit more. If someone says "I am constantly struggling to just say sentences" They just struggled through that sentence! It's a hard sentence. :( Social anxiety is hard for doctor's to not just shirk off...
    If someone in your instance says "I am in extreme pain!" then listen and find out whyy, doctor. It's your job!
    and eating disorder sufferer that has a "healthy" weight is invisible too, as I've heard from other people. If someone says they are suffering from what they believe is anorexia--even if they aren't stick thin-- listen to them.
    Anyways... I wish you even more strength. You are an amazing person with a struggle unique from my own. I have Social Anxiety-- I believe. I haven't gone to a doctor or anything. Well I sorta did, just that wasn't very productive in the end... I definitely don't want to hear "Oh, just be more confident and you'll be fine. You're talking to me now!" *facepalm*

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  68. You're amazing and beautiful! Thank you for sharing your story and spreading awareness about this illness. I know more after reading your posts.

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  69. Victoria. Good for you for being a voice for those with invisible diseases. You are right that people fear/disbelieve what they can't understand.

    You are a strong woman!

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  70. You're stronger than you could ever imagine, I hope you get through all this pretty soon, I'm sure you will. =] Have a wonderful day, =D

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  71. You are an amazing person, even if you are "just trying to live." That takes more courage than many people think.
    BTW I love your blog design!
    God Bless <3

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  72. I know how you feel about an invisible illness. I've been struggling with depression for a long time and noone understood, noone thought that I might be ill. They figured that I'm not worth talking to. So I do hope you realise that there are more like you. I'm happy that you learned so many wise things from your illness that most people aren't aware of. Ever.

    lots and lots of love,
    K

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  73. Dear Victoria,
    I see you, I hear you, and I understand. I'm sending lots of healing vibes your way and will hold you in my healing arms as I meditate each day. I'm your sister-in-arms and understand you, I have MS and many (most?) of my symptoms are invisible. Much love to you, Victoria.
    ~xo

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  74. I don't have Lyme disease, but I do have degenerating disks, arthritis and a herniated disk. I am 30 years old. I understand what you mean: I have been told I'm faking the pain, I'm fine, I'm too young, I look great, etc.etc. I had an airline stewardess tell me to go find someone who wasn't busy to help me lift my bags in the overhead compartment, since I didn't want to do it myself. When an illness isn't visible, people tend to think it isn't there. I support you and I hear you. I wish I could hug you in person, but instead I send you lots of love and empathy online. Keep your head up, beautiful!

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  75. Hey, Girl! So it turns out you and I have a lot in common! I have a very severe case of Ehlers-Danlos Syndrome, and am in ridiculous amounts of pain 24-7 that is invisible and unimaginable by others. All of my joints dislocate all the time- like a couple dozen times a day. Lately my hip is doing better so I'm out of my wheelchair, and people keep telling me, "Oh, I'm so happy you're having a good day!" What they can't comprehend is that I still have 3 ribs out of socket, or my shoulder or wrist or eye, etc. When you have pain all the time, you eventually get really good at just "faking it" because otherwise you would never smile or be ok! I totally know what you mean about how a "good day" for someone with an invisible disease is like a bad day for a normal person.
    It was also interesting for me to read about your journey getting it diagnosed and trying to find treatments. I seriously have the exact same story! I still haven't met a doctor who knows even remotely as much as I do on this disorder. It is so frustrating!
    My church just had a day of prayer and fasting for my sister and I as well and it was very encouraging, like the one you talked about. Even though people don't understand, it's nice that they're still thinking about you and supporting you.
    You do a really great job at being hopeful. I love the flowers on your blog and the way you find funny stories in things that happen to you with your disease. I'm proud of you for pushing on- I know it's hard, especially at your age! It's unfair to be missing out on things that other people your age do and take for granted. I know what that's like, too.
    I hope that things improve for you as much as they can, and that you find support from others. Oh- and thanks for contributing in Invisible Illness Awareness Week! Whoopsie- I totally forgot about it this year!
    Jenn
    www.keeping-it-together.com

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  76. Dear Victoria,

    I understand you. I have a problem in my knee and i havent been able to do any sport or just run in 23 months, i've done sports my whole life, all of my friends do sports. They can't see it, or know when it hurts, i look perfectly "normal". In some level i get what you're feeling. But you're strong, you try to survive everyday, facing a disease some don't believe, you're here telling the world who you feel. You're amazing, you're an inspiration. And you are so beautiful and amazing even with all of this happening. I admire you!

    If you need something, or just wanna talk,tell me something.(http://rachcanfly.tumblr.com/ask)

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  77. Your honesty and faith are really inspiring. I'm glad somebody actually came out and said how crappy it is to feel crappy!
    I hope that you'll soon have lots of days where you actually feel as good as you look, because you're definitely a beautiful girl. You are blessed and that scripture is a great one to live by. Keep living the best you can - you're already doing a great job.

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  78. Victoria, I am so sorry you often feel horrible while the rest of us think you look great. Thank you for spreading awareness - I will certainly be more mindful of my interactions with everyone!
    Love, Emma

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  79. Hi Sweetie,

    Sending some love and positive energy your way! Wishing you lots of moments of joy and gratitude as you move along this journey. What an incredible inspiration you are...you have impacted many and I thank you.

    A friend

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  80. Hi victoria,
    although I don't know what it feels like to have an invisible illness, your post is very informing and helpful to try to understand. your bravery though is very encouraging to those that seem to have it better off. if you think about it, you are so blessed, because God has granted you the faith and the insight to see that he is taking care of you and giving you strength. and that is more precious that anything. I pray that you continue to find rest and strength in Him, while being such an encouragement to others. And that God would grant your treatment to work. Blessings, Julie

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  81. I can only imagine how hard it must be to be told, be strong. So I won't say that, because obviously, you are quite strong. I will say you've inspired me to read more about Lyme Disease, and increase my own awareness, and for that, I thank you.

    All the best,
    C

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  82. You are so brave. Thank you so much for reminding us all that pain doesn't always manifest visually and that we need to maintain empathy for peoples' suffering. My support will always be with you, though we don't know each other, and I'll keep you and your story in my heart.

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  83. Hi Victoria. I'm impressed that you are able to use your pain to make people aware of what others with the same issues face everyday. It shows great maturity. You are truly a gift to this planet.

    Hug to you my dear from a LoveBomber.

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  84. Never give up hope. There are so many people you've inspired through your courage. I can only hope and pray your days light up more and more.

    Keep faith, lovely.

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  85. Hi Victoria. You don't know how much this post meant to me. I can identify so much with everything you just said from people (and even doctors) assuming you're okay because you look good and people assuming you're just faking it (my manager does). I'm suffering from GERD and PCOS. Though it doesn't show, both are too uncomfortable to deal with from the chest pain to the nausea and vomiting. It is hard and people can be judgmental. Just know that you're not alone.

    Thanks for sharing this.

    *hugs*

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  86. I know you don't know me from adam-- but know I am praying for you tons and totally support the awareness you are trying to raise about this disease.

    Victoria... you are going to give a voice to so many people who otherwise could not be heard. God is going to use you in incredible ways. So many people are going to be blessed though you being you.

    I will have you in my prayers!!

    -Mandy

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  87. Wow. I had no idea that this disease even existed. It must be so hard to have people ignoring it when you have to suffer.
    Just living may not seem like a great feat, and maybe it is all down to Him, but you could have given up living, just faded away, so be proud that you are living now. You can spread awareness about this, you can understand other people who have a similar problem, and God knows we need more people who really get things.
    Keep the sun shining, don't give up, but don't pretend that you play no part in getting through it because I am sure you do.
    I understand you may not feel strong, but I think that you are.

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  88. Victoria, thank you for sharing your story and spreading such powerful information about Lyme disease and other invisible illnesses. I have learned a great deal from your blog and will be more aware of others and their feelings.

    I would like to share with you my favorite quote from Dr. Suess:
    “Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.”

    Know that we are out here, praying and routing for you!
    Debbie

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  89. Great post--I love the layout/design of your blog! That is a great piece of scripture, a great motto. From reading your post I can see you live by that piece of scripture. Many hugs, prayers and well wishes. I don't know anyone with Lyme disease but it sounds terrible. Def. in my prayers. <3

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  90. You are never alone even when you "FEEL" alone. Always remember that. I also know that things happen to us in such a way that allow us to help others in a way we never imagined possible.

    Hang in there. It will get better.
    Love & Light
    Frank

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  91. I'm rather shocked to learn about all the controversy for Lyme Disease. It kinda sickens me that people could take the view point of it being fictitious. I admire you being so determined to not let that stop you from getting the help you need. I think its really cool that you're doing what you can to raise awareness about this.

    Your faith is inspiring. I'm glad you have it, because I know that in your dark times it'll carry you through.

    Hang in there love. Your pain is real, but all the little joys in life you experience area also real.

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  92. Victoria, I can't empathize with you at all, but I can sympathize. I am sorry to hear you are going through such a rough time in your life when you are supposed to be having the time of your life. Know that the more you help spread awareness about this disease, the more you are helping others, like yourself, in years to come. Treasure that. Treasure your family, friends, and God, because THEY will be the ones to help you through this so you don't have to do it alone. Prayers being sent your way to give you strength and courage through this rough time.

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  93. You deserve friends who will appreciate you. We all know that you're not "faking" it. Hang in there, because you can make it. God bless.

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  94. I just want you to know how brave I think you are. As someone who is dealing with anxiety issues, I know what it's like to have something that affects you so deeply, but doesn't necessarily show on the outside. You are a courageous, amazing person.

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  95. Dear Victoria, I send you all my love and best wishes, you are in my thoughts and in my heart now and forever.
    You are strong because you don't give up the fight for you life.
    I don't have a physical desease - I fight against depression and other psychological disorders ... and god knows I wasn't as strong as you - I wanted to give up many times.
    But someone like you - with a real desease - and the strength to fight is inspiring to me. So I'm thanking you for your blog.

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  96. Thank you for articulating this all so well. I can't begin to understand what you are going through, but I am sending you all of my thoughts and prayers. You are an inspiration to the world, and you are doing so much good for others by spreading awareness. Thank you for being amazing :)

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  97. Victoria,
    This disease has taken your independance, taken your childhood, taken your whole life on a crazy, painful, heartbreaking roller coaster, and some people want to believe that it doesn't even EXIST?!? Oh honey, you are the picture of patience, not ripping your hair out every day because of being told that you're fine. Because inside there's a little war going on! And that's not just the lyme disease! There's all the regular teenage struggles, the regular anguish and upset and host problems that we all agree is "the most difficult time of life" PLUS you are dealing with THOUSANDS more issues that many people will never completely understand!!!! You have been blessed with such amazing perseverance and an amazing faith. You already know this but God loves you so, so much, and he's so proud of what you're doing. God thinks you're the bee's knees. And he really has given you such incredible strength and determination and goodwill. You are going in the right direction and I too am proud of you. I said a prayer for you that God would ease your pain, keep you safe, and help you to touch many, many more lives. I wish you the best of luck and please know that you are loved by more people than you will ever know.

    Twoey (age 15)

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  98. Hey Victoria :)

    I just wanted to let you know what a blessing it was for me to read this post. God is so overtly alive in you and here in your words. Keep resting in Him and know that we all love you so so much :)

    You are beautiful, amazing, and a wonderful person.

    Lots of love and a huge hug!

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  99. Your trust in your Heavenly Father is in inspiration to all. You are loved. :)

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  100. you are an incredibly amazing, brave, and strong person! Thank you for such and inspiring post. You are loved!

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  101. you are an inspiration, by sharing what you are going through with the world. it is so easy to lay back and feel down and sad about what we are going through sometimes... it takes a special person to overcome that and want to use that pain and sadness towards helping others. you are an awesome person for that. many, many blessings to you and keep up the good work. thank you...

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  102. Victoria, your lucidity and strength (even though you say you're not) amaze me. People, my friends, everybody see me as a strong woman and when i'm down the drain into depression, they're just like, bah, it's nothing. I totally understand how tough it is not to be taken "seriously" when you say you're in pain or in need of help. It's so frustrating. But as i said, i am truly amazed by your attitude. You're an example to be followed. I really wish you the best and that one day, there'll be a cure for you. (((((hugs)))))

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  103. God Bless you Victoria!
    Don't ever deny that you are strong! Fighting for your life is the epitome of strength! many would and have given up, but I can see that you won't without a fight!
    Please know that I will pray for you and for all who suffer this invisible disease!
    And yes, I'm part of the "Love Bomb"! I'm soooo glad to know you!
    Lotus
    Modesto, CA

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  104. For having not realized you could give others hope (number 16 on your list), you're sure doing a great job of it! =D
    Great post! Thanks for spreading the word!

    "Be strong in the Lord and never give up hope. You're gonna do great things, I already know! God's got His hand on you so don't live life in fear."
    (Sidewalk Prophets, "The Words I Would Say")

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  105. Dear Victoria,
    I see you, I hear you, and I totally support you. You are such an amazing young woman. Your wisdom and courage are incredible. I am sending you much love and light, and I want you to know that you are doing such a wonderful thing, by educating people. You are fabulous...even when you don't feel it...you are fabulous.

    Love & hugs,
    Robbin

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  106. Dear Victoria,
    What an amazing post! Thank you for writing a much needed insight to the invisible illnesses. You have lots of support here by so many people.
    Hugs - Sharon

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  107. Dear Victoria

    The way you have such optimism, counting your blessings and focusing on what you CAN do, is both admirable and such an encouragement, to those around you and to every person who has read your message (including me). Although I can't 100% relate what you are going through, I struggle with anxiety. I try to think positively, but sometimes I spiral until I can't control it.

    You inspire me, and many others I am sure, to pick ourselves up the best we can after a bad phase, to focus on what we can do rather than what we struggle with, to keep going through adversity and count every good thing in our lives.

    Thank you for raising awareness of invisible illness, you're making the world a better, more understanding place

    God bless you <3

    Em

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  108. Hugs and much love! You ARE strong and your attitude inspirational.

    I am so glad I was directed towards your site, on a totally unrelated matter to invisible illness week. In coming here for something else I learned a lot that I can apply to my life. I have a friend diagnosed with Lyme disease and this helps me to understand her a little bit better and maybe I can be a better friend to her. Thank you, best of luck and good vibes to you for understanding and much love and happiness.

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  109. Just wanted to drop you a quick note to say stay strong. Continue with your optimism and good attitude.

    Sending you hugs and good vibes.

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  110. You are an incredibly strong woman and an inspiration to us all. Lots of love! <3

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  111. Dear Victoria

    I can relate to how you feel,I suffer from anxiety disorder,at least anxiety disorder....and I say that because it is the only constant in the misdiagnosis of mental disorders I have had.
    A doctor hears you utter a certain text book situation and has you immediately pigeon holed into a specific disorder that he has seen a million times.
    They don't want to look for cures,they want to toss higher pill doses at you if something is not working.
    If you are able to do a certain activity that you never could before,everyone assumes..'Your new meds must be working well'
    When in actuality they made you feel so sick you stopped taking them,and today you are feeling horrible & terrified but have made it out on your own courage alone.
    So from someone who knows the plight of non efficient medication...Bravo to you for finding your courage everyday.
    P.S....Do not give up on holistic/herbal treatment..You just have to find the right one.I know of a girl who apparently can only function with the help of her herbal healer after being diagnosed with Lyme Disease.Her health is not perfect,but 100 times better than when she was being treated with pharmaceuticals,so you never know,keep faith <3
    Amanda

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  112. You have such a good attitude about your disease and I know that God is going to get you through. It is not easy to feel one way on the inside and have nobody recognize it. You to me, embody the spirit and Paul (I think it's Paul) talks about being content in everything and rejoicing in everything. You wouldn't change the fact that you have your illness - that to me show you you have embraced rejoicing in everything!

    I would love to get to know you better and if you ever want to talk: mkzellmer at yahoo dot com

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  113. I have scoliosis so i absolutely know about invisible illnesses and doctors not understanding. None of them believe that this disease is actually painful. Since the doctors don't believe it, my friends don't believe it and i only really open up to a few people. I can't stand it.
    Luckily, I'm getting better. Of course, scolio is permanent and i can never actually go back to how i was before, but at least now that i'm not growing as fast, the pain isn't as intense. I've been battling this stupid sickness for three years. I'm 15.
    know that i regret the dark times when i gave up hope and fell prey to mild bouts of depression. i am more positive than i have ever been and am back to acting 100% normal, at least with people who don't really know me.
    felicityevenstar@gmail.com

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  114. hey girlie, you are not alone in this. i wish the best for you . try to keep a good attitude! many people are thinking of you and your struggles today and always! love to you.

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  115. Victoria:

    Hi, i have to be very honest and admit that i have heard about Lyme disease and never paid attention to it. Thanks, because you open my eyes about invisible illness.

    It's such an inspiring post. You are a great girl. I love to make new friends so if you feel like to have a friend at Panama, visit my blog leave me a comment or contact me at k.wong85@gmail.com

    hugs! and God bless you.

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  116. Victoria,
    I loved what you wrote in #23..that you wouldn't change anything because of the blessings you have been able to witness through your circumstances and the heart for helping others who also suffer; that sentiment reminds me of paul, when he asked the Lord to heal him, but when the Lord did not take his physical burden from him, he was thankful for his circumstances because of the humility he received. Maybe you don't think that you are strong, or are undeserving of the word, but fighting for your life DOES require strength! And to have your perspective DOES require strength. And yes, it is the Lord's strength..I don't think any of us are really strong on our own, but be encouraged when the strength in you is recognized! I read every word of this post and feel encouraged by your passion and your honesty. I may not know what you are going through exactly, but I DO know what it feels like to be misunderstood. And in any case, big or small (I know yours is big!), it is frustrating and painful. But thank you for sharing your heart and for your genuiness in this post. Although a stranger on this earth, you are a sister in Christ and I am behind you 100%! With love, Kalie

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  117. Hi Victoria,
    I know exactly what you are talking about. I suffer from depression and spend so much time trying to put on a happy face. If I smile, people assume that I'm better; If I look depressed and out of it, they assume that I'm just thinking about something.

    You write beautifully and I'm sure many people are behind you, everyone here included.

    Much love <3

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  118. Victoria,

    Thank you for being so honest and truthful on your blog, and thank you so much for allowing us a look into your life. You are so insightful with what you write, and through reading all of your prior posts and this one, you have taught me a lot!

    You are an inspiration to me, and I hope you know that. You are faced with challenges everyday, and yet you have such an optomistic attitude, and I want to tell you that I admire you so much for that! =)

    I wish you many blessings today and in the days to come!! =) Never give up, because you, and God, are stronger than you think!

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  119. This video and song have been playing in my head the entire time that I was reading your blog, and I thought maybe you would like to hear it too... It's by a Christian artist, Meredith Andrews.

    http://www.youtube.com/watch?v=8FXLo3aCkuQ&ob=av2e

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  120. Victoria,

    Thank you for bringing this very important topic into the light.

    I appreciate anyone who takes such matters by the horns and spreads awareness instead of just trying to reap pity. You must be so strong and brave. Know that you have the ability to touch the lives of people in a very real and beneficial way.

    Keep up the great work, I am rooting for you!

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  121. Thank you for bringing attention to this invisible disease. I have heard of it, but I wasn't aware of its effects. I've had depression and panic attacks since I was 15, so I know what it's like to not be like other people your age, and missing out on so much. That's something else that is paralyzing but people cant see it so they dont understand. Sending lots of love and big hugs your way. I hope one day you will be 100% healthy and very happy

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  122. Victoria,

    You are such a lovely young lady! Thank you for having the courage to let others know about your Invisible Illness. It is inspiring to hear that you wouldn't change a thing. I, too, suffer from an Invisible Illness. I've found that suffering from an illness really shows who is a true friend, and makes me appreciate those people (as well as my supporting family) even more.

    You've given me the courage to be more open about the arthritis I suffer from. I'm sure you hear the same things... "You look great!" "I couldn't tell that you're suffering." People don't understand the pain that sufferers of the invisible diseases go through. We may look okay on the outside, even great, but are often in pain that others can't see.

    Thank you for being a strong young woman, willing to shed light on something so important.

    I hate to sound corny, but if you ever want to talk, I'm here for you as someone who *somewhat* understands what you are going through. I can not say I fully understand, as I've never gone through Lyme's disease, but I can try.

    Stay strong!

    Lots of love,

    Alicia

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  123. victoria, thank you for being so open and honest, and it has definitely made me more aware of the issues you are talking about. stay strong, girl!

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  124. Praying for peace and a new revelation and outpouring of His love on your life. You are an inspiration.

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  125. Victoria,

    What a gorgeous blog.. and woman that you are. I too have an illness I hardly ever mention, 'cept to trusted few. I deal daily with sadness that I'm not part of the daily life of my two beautiful, smart and healthy little girls. I bury it and hide it.

    I thank you for being the opposite of me.

    Love, Jeffrey

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  126. You are loved.
    Remember that there are people out there that actually do care and maybe even understand you.
    I hope you continue braving on.^^

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  127. Victoria -

    Your faith in God and your understanding of what is important in life is truely amazing. I may not know you in person, but I am with you in your struggle and I will keep you in my prayers. I hope the God will soon move the government to recognize the existance of Lyme disease and move doctors to search for better treatments and a cure, so that one day you can have a normal life, because you deserve it.

    Love and prayers,
    Kit

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  128. Victoria-

    Thank you for putting such intimate thoughts and feelings out there for others to read and learn from. God has a reason for everything. I will be praying for you.
    Much love.

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  129. Thank you for being so courageous and sharing your story!

    I had no idea and learned a lot from your post.

    I hope that tomorrow is easier for you. My thoughts and prayers are with you.

    Blessings to you.

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  130. Victoria,
    Man, it's a weight off my shoulders, finding someone else who really gets how bad invisible diseases can be.
    I didn't know it at the time, but when I was little, I had Obsessive Complusive Disorder. I was about twelve, but only found out what it was a few years later.
    I think I had it for the better part of a year, but no one really knew. Of course, my parents noticed, because the main OCD symptom I had was being terrified of getting sick/hurt. So i freaked out about cleanliness, and stopped doing things I loved, like, playing outside. They just kind of assumed it was a weird phase or something.
    I dunno how, but i somehow managed to get through it without any help from anyone, and though i sometimes have mild symptoms of it, I haven't suffered from it since.
    Only a few people know about it, but like you said about, many of them felt that it wasn't really an illness.
    Why must it be so hard for people to accept the fact that not all illnesses are physical? Not to undermine the physical ones, but sometimes it's all the turmoil and battles going on inside someone that are worse than physical scars and pains.
    I hope that one day the world will come to terms with the fact that not all illnesses can be seen from the outside, and that everyone deserves some love and support. You are a strong, courageous woman, and I want you to always remember that you have many, many, many people rooting for you.
    Love, a friend

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  131. You are amazing and you are loved < 3

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  132. Thank you so much for sharing!! I learned more about Lyme disease here than I have anywhere else in my life.

    But besides all that, you rock. Just know, Jesus is incredibly proud of you. I bet He's bragging about you right now, smiling as he thinks of His delightful daughter :) What a gift you are - even when you do feel really sick. Thank you for being your own advocate and reminding people that sickness is real! Even the invisible kind. I'm going to be much more conscious of how I treat people with illness now - I'm going to try less sugarcoating and more validating. Thanks for the inspiration.

    <3

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  133. Victoria, thinking of you and sending lots of love. It is great how you are raising awareness of your disease in order to help others. I always try to remember that you never know what other people are going through under the surface but I had never heard of invisible illness. It humbles me because I have had an undiagnosed painful shoulder injury for several months which no-one can see. But it's really not that bad compared to what other people like yourself are going through. You have made me realise there really are bigger more important things going on other than myself! With love, Celia xxx

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  134. I'm behind you 100%! :)
    I have an invisible illness as well and am thankful for finding this post of yours, you are an inspiration.
    ((hugs))
    I hadn't heard of Invisible Illness Week -- I think it's providential that I came to your blog today; it helps me know that I'm not alone in this, to know there are others who do understand. Thank you for sharing your story, and bringing to attention IIWeek.
    Wishing you every happiness dear one!

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  135. Victoria,
    Although I don't know you, I do know your God. I am so glad that you know Him as well and there is no greater joy in the world than Him. Even though you don't enjoy a normal life, you have something in your life that makes you happier than so many other people who are leading normal lives without God. I pray that God would strengthen and encourage you and bring people into your life who will be great friends to you.
    <3

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  136. Ah, Victoria.
    You're a lovely person and I want to thank you for talking about IIWA. It was rather eye-opening.
    You're relationship with God seems so strong, Victoria. Hold onto Him and trust Him always. He has a plan for you. A good and perfect plan. I'll be praying for you, dear. My heart aches for God to heal you wholly.
    Always remember you have a purpose in this world only you can fulfill. :)
    Much love,
    Miranda <3

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  137. You are so strong. You're strong because you ARE fighting to live. You're not giving up. And you're trying to use the terrible lot you've been dealt to help others. I don't know you, but I admire you so much. I admire you for your strength, I admire you for your faith. You will be in my prayers.

    Much love. <3

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  138. Your blog is beautiful. I pray that the Lord will be your strength, your joy and that He will heal your body. The Lord has a specific and special plan for your life, and my prayer is that the Lord will use you in a way that only you can be used. May the Lord wrap His loving arms around you and may you feel loved more than you ever have before. I will be back to leave you those words of encouragement, you have many cheerleaders, we will cheer you on so you can in turn be a cheerleader for others. xoxo

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  139. Victoria,

    I also suffer from an invisible disease, which can leave me in severe pain, but others don't recognize. I agree; this can be very frustrating. I find strength in this illness, for it has made me a more compassionate and understanding person; I find the simple joys in life which others may not see :)
    I wish you strength, courage and happiness :)
    Sending Hugs from British Columbia, Canada.

    Julie

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  140. I had no idea that Lyme disease was not recognized. What a sad state of affairs. That's just not right. I hope you know that you have not so invisible people behind you all the way. Thanks so much for the very informative post on your invisible disease. Thank you.

    Kristin _ The Goat

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  141. What you have done is so impressive. You are very inspirational and have a great spirit. I read posts on your blog because I wanted to understand more about your invisible illness and it was eye-opening. I wish you all the best for the future.

    <3333,
    Alice

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  142. Sorry for what you have to go through, and it makes sense people have trouble believing things they can't see, but keep strong you can make it through this. I hope things get better for you and maybe your words will help others realize the truth in the matter.

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  143. Hey Victoria,

    thanks for being so open and honest - that is what awareness spreading is all about, to talk openly so other people have a chance to learn from you.
    Thanks for letting me know - from now on I will closely look at people before greeting them with a "you look good today", or even dare to ask "you're not looking so good today - how are you feeling?".

    So thanks - and keep strong, in your love of god, with him you can go through this ordeal.
    I wish you lots of other nice trips with your family and slowly but surely the chance to return to the teenage life you had before!

    A big hug from Belgium

    Marion

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  144. I just want you to know that I think you are amazing!

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  145. Victoria,

    Your faith and attitude are inspiring. And despite what you may think, you are strong, because you are sharing your story with us and you are persevering, not letting this beat you. Keep drawing your strength from God and know that lots of us are praying for you!

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  146. Hi Victoria! ^^

    My name is Victoria too, so I'm getting a little funny feel just by typing this message. Especially since I've lived, and I'm still living with, invisible illness like you. It makes me feel like I'm not alone.

    I came here with the intention to brighten up your day and it turns out that you are brightening my own. Thank you.

    Please stay strong- although some times might be rough and difficult -we'll all make it through. Together. Strangers holding hands, who says we can't make the world better? ♥

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  147. Victoria
    My heart goes out to you as I know how silent and invisible diseases effect your entire world. It is so hard to be in a body that denies you normalcy. My husband was diagnosed with MS 2 years ago and every day is a new challenge and some days - are great but no one gets how trying it is to have something no one can see or feel but you. I know that your faith will get you through this - it is the only way we have survived the challenges we have faced. You are not alone. I am praying that love and light surround you and that God strengthens you in every way.
    With love and compassion,
    Vickie

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  148. "Each one can reach one."

    I love that so much, no matter what you apply it to. Wow, thank you. That just made my morning. I'll be thinking about that as I go about my business today.

    Much love, my dear. :)

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  149. My mom has suffered from fibromalygia for a long time so I understand, from an outside perspective, what you are going through. Although my mom looked fine... she was not. And I can't imagine what that's like. It AMAZES me that you take the time and effort to raise awareness and give others who are in your situation hope. You are a beautiful person and so loved. I will be praying that you find doctors who care and are able to EFFECTIVELY treat you.

    I'd like to add that my mom, after suffering many years and trying many treatments (which all pretty much ended up just being painkillers), found something that is completely treating her fibromalygia. It's simple/inexpensive, and it truly healed my mother. I don't know why more doctors don't know about it... I suppose it's because, like you said, they don't entirely acknowledge its existence. I hope you'll take a minute to check out guaifenesin treatment, IT WORKS.

    http://www.fibromyalgiatreatment.com/

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  150. I never knew that there was a stigma attached to Lyme Disease. You have inspired me to research a bit into it.

    I want you to know that I believe you. I believe you are suffering, albeit silently. Though you don't know me, I am here for you if you need a friend.

    I never knew that there was an invisible illness week, either. So often I feel like maybe I am making up my symptoms. I go into the psychiatrist's office and he says I look good, while I am having a panic attack on the inside. Know that, though I came here to support you, you have helped me too. *HUGS*

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  151. As someone who has dealt with getting sick (depression and other undiagnosed illness) once a month or so my entire life, I deeply feel for you. It hurts just to imagine having to go through something like that day in and day out.

    Especially having to explain to people how you're feeling bad when they can't see it- so deeply frustrating! You don't want to feel sorry for yourself, but you're suffering so much, you at least want people to understand that.

    I was a pretty, healthy, popular freshman in high school when I broke my back. Then pain, misery, alienation, weight gain, and depression were all I knew. I feel your 'loss of youth.' Oh how I feel it.

    (I was blessed to have one true friend- still my best friend- who has helped me through every hard time. I don't know how I would have survived without her. I hope you have someone you can always talk to as well, but know that people are listening here at least.)

    What helps me is looking to the future, creating and appreciating the good in life. I can't feel bad about loss in the past unless I'm focusing on it, so I try to focus on creating the opposite in the now.

    I'm encouraged to see that you are doing the same. Educating people about your illness. Reaching out. Helping others is the quickest way to feel better, even when we feel we have nothing to offer them. You are an inspiration! It may not seem so, but you are. Thank you for sharing your struggles with the world. Thank you for not giving up!

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  152. Your faith in God and your spirit are so encouraging. You are a true blessing to the world. May the Lord's peace be with you and may your efforts to inform the world of Lyme disease be widespread and beneficial to many.

    Never lose your faith or your perserverance. I will see you in a better place where we will live for eternity without hurt, pain or disease.

    Love & Hugs,

    Julia

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  153. You're awesome! Thank you for the inspiration, and for your faith in the Lord!

    xoxo

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  154. Victoria, you are a precious child of God. Thank you so much for the encouragement that you have given to me and countless other people as you share what is happening in your life. It is truly breathtaking to listen to your story and consider who God has formed you to be, and to see how He is continuing to work through you. Obviously, living life with Lyme disease isn't anywhere close to being easy - but the way that God is redeeming your battle with the disease is truly awe-inspiring.

    Treasure what the rest of my brothers and sisters have said here; God encourages us through each other.

    Praying for you...

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  155. Victoria,

    You are so brave. Thank you for sharing your story and for being an advocate for those with invisible illnesses. You have a strong voice and you use it in a positive way. This world needs you.

    Be well,

    Meg

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  156. Thanks for sharing. You're awesome!

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  157. Victoria,

    Thank you for your beautiful blog and all the work you are doing to increase awareness and share your experience so openly and honestly.

    I have two friends with invisible illnesses, and they have shared many of the same sentiments you do. I also know another person with Lyme disease and had no idea how much you have to deal with long-term until he shared his story with me.

    Much love and many prayers to you and your family. Thank you again for your words.

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  158. Love Bomb had you listed to send encouraging words to...
    so I am here to wish you the best. I, too, suffer from fibromyalagia so I know what you speak of. Many times people do not believe the amount of pain we have. Many times I do not participate in things because it is just too difficult, but I smile and keep going. Please know that you have many partners in the world that WILL and DO believe you have the pain that you are experiencing and send [[hugs}} and care to you. Victoria, we do not know each other, but I send my heartfelt love to you and hopes that on those particularly hard days you will know that there are a host of people who really do care. May the warmth of those that send you good wishes bathe your sore muscles in comfort and fill your heart with joy. Take care and take it easy on those hardest days. Spoil yourself as much as possible then and do not feel guilty for doing so. May peace be with you and your body.

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  159. Hi! I know nothing about Lymes disease, so I googled it. Lordy, girl. You may not think you're strong, but the fact that you are trying to live, and trying to raise awareness means YOU ARE. You are so strong, and I feel so blessed to know that I have my health. I am standing behind you, in all that you do, and my thoughts are with you.
    Keep your chin up, and know that you have educated me.

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  160. I know EXACTLY how you feel, I have really bad anxiety, and panic attacks, and it's really hard to explain to people how bad it is. No one gets except my mom, who also has the same problems. Stay strong! You will come out victorious :) Thank you for sharing this with us all! <3

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  161. This sounds awful. I don't know what it's like to suffer silently. You've made me appreciate the fact that I can get out of bed and walk, something you mentioned in your list, as well as all the other things I never really thought about. You may not think so, but you're strong, simply for the fact that you're fighting the disease and raising awareness. Keep your head up!

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  162. Well done for raising awareness about this, it is a wonderful thing to do. Fabulous!

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  163. Victoria - I am sorry that this illness has taken away your teen years and I can see how much it means to you to inform others of the "invisible illnesses" that many suffer from. I am healing from adrenal exhaustion and really learning to stop doing in order to feel good about myself. I am doing 100 days of self care (Chinese Medicine theory) and part of my healing is around learning to stop doing - to say no to those things that take my energy away, so I can put my energy to good use. Much blessings to you on this healing journey!

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  164. Hey Victoria.

    You are so brave. To suffer so much, yet stay so strong and write so beautifully? You are definitely one in a million. Its a horrible thing to be suffering and being condemned for it when it is of no fault of yours, and I am so sorry you are being treated the way you are. But know that even though you might feel this way, you are not alone. You have friends all over the world now supporting you and fully aware of your situation, sympathizing and willing to walk through this journey with you. I know I am, I admire you so much. Stay beautiful inside and out Victoria, you are a person that has so much to be proud of. You are never alone. (:

    Here to be a friend, always!
    annalisalikespickles@gmail.com

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  165. Don't give up. Whatever youre going through now, it is not just a coincidence. God is using you to impact others around you.

    You have a brillant testimony.

    You inspire people around you to see the true reality of life, and not take things for granted.

    Keep it up the perserverance and run the race well!

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  166. Dear Victoria,
    Hang in there! I'm sorry people don't know how much you're suffering.
    I'll keep you in my prayers!
    Love and tons of hugs!
    Carol

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  167. Sending you love and prayers, Victoria, from here in CT. We are all connected and as I learned from the wonderful facilitator of an on-line art exchange that I participate in, "you are loved beyond your capacity to understand!" Always!

    love,
    Erika

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  168. Victoria,

    Love and blessings to you. There are no words to say other than many of us (known and unknown to you) send you light as you walk through the darkness.

    Know that you are being held tightly in the arms of God.

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  169. Dear Victoria,
    You are truly a beautiful person inside and out. I have so much respect for you and how darling your soul is. You inspire me greatly and i thank you for that. I wish people knew more about your disease and knew how you were actually doing. and if there is anything i can do to help i am always here. You will always be in my prayers. God will keep you safe and get you through this. You will never be alone. :) <3<3<3
    Love Always,
    Bailey

    message me if you ever need anything, darling.
    bailey.a.harmon@gmail.com

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  170. Victoria,
    Your faith in God and trust in Him inspires me so much. You have this horrible disease and even though I don't know you I can tell you have such a strong faith in Him. He loves you so much and like Romans 8:28 "And we know that for those who love God all things work together for good, for those who are called according to his purpose." He has you in the palm of His hand and nothing happens in your life that hasn't first been strained through the merciful hand of God. Praying that He gives you strength everyday. Love.

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  171. I too have fibromyalgia, and my husband caught Ross River virus, similar I think to Lyme disease but caught from a mosquito rather than a tick. So I know how you feel, and I just wanted to send you a note of encouragement. I've lived with the Fibro Follies for 11 years now and I have simply accepted that life needs to be lived differently, although I'm a lot older than you. Please know that staying positive can be a struggle but it does help maintain one's sanity. Also, if people haven't suffered pain, they don't understand when they can't see pain. I now take the time to explain to people what is going on, so that they know I have ups and downs, and I'm open if I have a bad day. I have found people these days more sympathetic as they know I do my best. Love and hugs to you. Mo

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  172. thanks for all your work on this blog. wanted you to know we're thinking about you and wishing you continued strength as you go through this. it's great that your faith is firm as well. you're in our thoughts ...

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  173. I love how you honor God through this post and so much of how you live your life. Continue to trust in God and find your strength there. You have my prayer!

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  174. You're stronger than most of us, Victoria! Thank you for making this post and sharing awareness about what you've been going through, I know it probably wasn't the easiest post for you to write, and I hope when you read all these comments you know that we all support you!

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  175. Victoria: I'm impressed by your courage to say something, to write about your illness. Thank you. Love bomb.

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  176. It's truly inspiring how you've been able to use your illness as a motivating factor to help and educate others...the world needs more people like you! Stay strong and keep fighting, we're praying for you.

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  177. Darling,
    Stay strong. Anything is possible with the Lord.

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  178. My brother has been struggling with Lyme for three years now . . . his wife left him, he was misdiagnosed, mistreated, and all alone. He is an amazing ultra marathon cyclist and now can barely walk from his bed to the bathroom. I think that following your blog will help him realize that he is not alone and will give him even more determination to not give up. We are all in this together and I look forward to following your progress through your blog. my love and many gentle hugs to you Victoria.

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  179. Dear Victoria,
    I have first-hand experience of Lyme Disease and the damage it does - up and down, no 2 days alike. I wish you many good days, strength to persevere with the medical doctors, and the ability to cherish each good moment and know that there is beauty in the world. You are educating and encouraging others, there is no higher work.
    Aloha,
    Peggy

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  180. Hello Victoria,
    I know several people who suffer with Lyme disease; it's quite prevalent here where I live in NY. Thank you for speaking out and spreading the word about this invisible illness.
    May God continue to bless you & keep you in his care.

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  181. Hi Victoria!
    I just read through some of your posts and they really touched me. We're the same age and I can't imagine being in your position. I just want you to know that I'm thinking about you and praying for your comfort and healing. We all love you on here :)
    Annette

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  182. I loved reading this post so much, Victoria! I have an "invisible illness", as well. I have had rheumatoid arthritis since I was born (I'm 20 now) and some days I can't even walk. It's really frustrating for me because some days I am fine, and some days I am stuck in bed, and no one seems to understand it. I get rude comments from people all of the time, asking what is "wrong" with my hands (they are twisted from the disease), and people CONSTANTLY asking me why I am limping. I totally can sympathize with you. Keep on doing what you are doing, girl :)

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  183. You're awesome. YOu are perfect. Everything is perfection.
    You'll get through this. I just know it. Seriously.
    You are loved darling!
    <3 <3 <3

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  184. Victoria, Your strength and faithfulness in the Lord move me. Thank you so much for setting such a beautiful example to me of what it looks like to really trust the Lord. I am praying for a cure. I am praying you will be healed. God is faithful, and He is so madly in love with you: His beautiful princess.

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  185. Victoria,
    Please know that I hav eenjoyed reading your blogs. I have been recently researchering this disease, because my best friend has it. I was unaware of the sever symptons that come along with Lyme. I just wanted to say thank you for your blogs on educating us! Keep your eyes up toward the Son!

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  186. Victoria,
    I was recently diagnosed with chronic lyme's. I am a 37 year old wife and mother of two precious little girls. I am overwhelmed and looking for support and people to talk to about my disease. I would love to talk with you. You are such a wonderful, courageous young women. I requested you as a friend on facebook too. Can we talk?
    Kellie K.
    Katy, TX
    Diagnosed Dec. 2011- I think I contracted lyme's about 12 years ago.

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  187. Victoria,
    I am a mother of a daughter who has chronic lyme and has been misdiagnosed for 13 years. My heart goes out to you as it does my daughter. Hang in there, and God will see you through.

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  188. Victoria,
    I am a mother of step-children, 5 from my first marriage and 2 from my second marriage. My husband is a wonderful support in my life, and my faith in God is also. I am overwhelmed, in my 50's - I was was first diagnosed with Lymes' Disease in 2006. Through many years of agressive early treatmet; and Anti-biotic- insurance accepted methods- as well as with a Homeopathic medicine treatment - a Non- insurance accepted method during that time. By the 2007 time frame I was much better. Then, I had to stop the Homeopathic treatments, and go back to the regular methods.
    Since then, I have had a diagnosis of Fibromyalgia, and two types of Neuropathy. Four specialists duely try to give me relief.
    I still work full-time, and have the entire time I was infected the first-time, because my first husband wanted a separation/divorce. He did not help me at all during the treatment, other than the insurance. Then that was cancelled.
    Luckily I was working, and was able to get on my own company insurance. It was hard to work, and focus but I gave it my all. And still do, until lately I've been ill and I have had to rest and stay home, after two ER visits from the re-infection, which is what they suspect.
    Within the past month, they have detected a Co-infection. I had the Dr. refer me this time to a Infectious Disease Specialist here, who is yet doing another set of blood work testings.
    I have possible re-occurance of Mononucleosis, on top of it.
    I've been to work back for only 3 days, I have such trouble with my BPressure/Heartbeat and fatique - I remain at home to rest with the RX. A Co- infection yet ontop of what I have dealth with in the past. I have to keep working, my income helps sustain the medical bills, our livelyhood, etc. But, God will help me through the rough times. He helped me survive the first time as well.
    My heart goes out to you. I have been so down with weekness, that an emerging strength has taken place. I only eat because of the medicine I am taking. Just like the first time- I've lost most appetite. The last time I lost an enormous amount of weight.
    I do not know what lies ahead, just that I have faith to tackle what is needed.

    I know that there is such a think as Cronic Lymes- I live it everyday- only in the name of other diagnosis.

    Your spirit is so moving, you are a courageous young person. My FBook is available, if you are interested to be a friend I would like that.
    Let me know, creativeinfo@namestedesigns.com
    Oh, I do artwork and photography too.

    Take care,
    Vickey
    Diagnosed Feb. 2006, and again June 2012.
    Peace!

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