Monday, December 16, 2013

A Day at the beach, this is not.

A week or so ago I went back to my Lyme doctor to discuss the latest set of tests and yada yada ad nauseum.  An hour later Rick and I walked out with that deer in the headlights look. Thankfully, he's completely on top of everything now, but I'm less so.  So I write.  I write about my illnesses here not to get pats on the back or anything like that.  I just write what I'm living, and this is what I'm living with.  It's not all happiness and beads and pie.


I'm actually quite lucky.  I have a good, knowledgeable doctor, a husband and son who put up with all the many changes Lyme disease and an active mold infection/invasion/whatever you call it brings, and I try to remember there is indeed hope.




But knowing I'm lucky and acting like I'm lucky are two entirely different things.  I've been trying to process what's going on with me and I find myself being sad, angry, hopeful, back to mad as hell.  I think that's probably normal for anyone who gets bad news about their health.  I also think a lot of people in similar situations are afraid to say they're mad, because so many other people have a life that is much worse.  I know this.  I mean, I *really* know this.  But it doesn't help when you're shaking like a leaf from pain or so sick to your stomach you can't move.  To hear "this is good, this means the bad bacteria are getting clobbered!" doesn't do me a bit of good then.  It makes me get all bitey and stabby. 


I guess I'm just not an inspirational kind of person these days, and that makes me all kinds of sad (and mad).  Right now I'm not the kind that can be joyful in the midst of swallowing 15 pills, thinking "at least I don't have to have an IV every day."  And I don't like me anymore, either, which is pretty sad, too.  It's not surprising to me that many people have backed away as if I had a toxic waste tattoo on my forehead.  I don't blame them.  I'm a pain in the ass to deal with right now. 


I miss me.  



My latest appointment brought up a lot of new issues, all of which mean I can be treated that much better, but none of which felt like particularly happy news.  I have an active mold infection (I guess that's what you call it) three times the toxic level expected.  We have no idea where the mold is coming from, and mold is in all sorts of forms.  Most people think of icky black mold, but I learned that all my books, especially my antique books, and pretty much anything antique or vintage I've brought into the house, could contain whatever it is I'm infected with.  I need to see an allergist to find out, but worst case scenario, I'll have to discard a LOT of treasured things.  My life is more treasured, but I don't think there's a single one of us who would cheer to see your carefully curated things go in the burn bin. So we're getting a home inspection, and will go from there.  


I try not to think about it.


Ha.  Actually, trying not to think about it is getting easier.  The doctor said I had the worst case scenario of Lyme and mold together because they both can mimic each other and make it difficult to know what you're actually killing.  And my tests showed that both the mold and the Lyme has entered my brain.


To which I say, getoutgetoutgetout I did not invite you in.  Get OUT.


(OK, time for a station identification where Lori reminds herself why this is all worth fighting.)



That little boy is the love of my life and I have to be here for him.  But many days, I'm not. Adding new supplements and medications to fight even harder has rendered me on some days almost incoherent.  I sleep for hours and hours and don't remember where I am or what day it is or what time it is when I wake up.  Again, all this is good because it means my body is really giving it the good fight.  But I HATE it.  I hate missing an entire weekend of seeing Zack, reading to him, ANYTHING.  


Having this stuff in my brain means it's harder to hide, too.  I stumble, bump into walls, need my cane, walk with stiff legs, all until I can sit and get under control for a few minutes.  I can't go for long drives anymore, which used to be a way I got my grouchies out.  It's difficult to read because I can't remember what I read.  I can't remember if I got all the right presents for the holidays and they're certainly not wrapped.  And I'm having my pretty long extensions, all that lovely pink and purple, taken out tomorrow, in part because I just can't take care of it.  I'm afraid I'll cry when I see what's left.



We also discovered I have a genetic mutation that means I can't process folates, and the medicine I was given when they thought I had lupus was actually toxic to my liver.  Yay.  


But really, I should say YAY! with all sorts of enthusiasm because knowing all this, finally, means I can start to heal.  The doctor says at least 18 months.  That seems short sometimes, forever other times.  And I'm bitter about the year I lost, getting sicker and sicker and not knowing why.  But some people go years without knowing.  I'm trying to be chipper, I swear to pie I am, but it's very, very .... very difficult.


I have no idea what next year will bring.  I know I'll do the Bead Soup Blog Party but it will probably be a little different.  I can't make any real plans, as far as dates yet.  I'm sitting upright at this moment, typing, but tomorrow I could be flat out again.  Or not.  I just don't know. And I HATE that.  I'm going to try to be more cheerful and be easier on myself.  I hope.


I'm just really frustrated.  And I can't seem to put it into proper words.  It all sounds whiny and pathetic and I can't seem to make the lemonade out of Lyme right now, today, but who knows about tomorrow.  


I have absolutely no idea if this post made any sense.  I'll leave you with my best boy, making his mark in the world.  I hope to join him soon, making our marks together.  Ya know?  And I have to fight in order to do that.






(powered by pie)

Lori Anderson creates jewelry and bead kits as well as collaborative mixed media art with her son, Zack. Visit her shops by clicking on the right side bar of this blog (please and thank you!). She is also the creator of the Bead Soup Blog Party® and author of the book "Bead Soup".

79 comments:

  1. WOW! Lori, you are one tough lady! I'm praying for you!

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  2. Lori, When we are a fundamentally happy and hopeful person, we sometimes feel guilty admitting...this just sucks! Let yourself be angry. Let yourself be frustrated. Scream and rant and rave at the universe and the fact that you have to deal with this truly sucky illness...and then, when you feel ready, then you concern yourself with trying to stay positive and upbeat. Know you have lots of us sending you thoughts of strength and love, and hopefully that will help a little bit to sustain you while you weather this latest storm. <3

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  3. Lori,we love you...everyone goes through difficult times, where things can look bleak..I have faith you will soon see brighter days.

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  4. We've got your back, Lori. Sending strong and healing vibes your way.

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  5. "You is kind. You is smart. You is important." Here's to: the 18 months is less, you can sit up and blog two days in a row and you are able to read to Zack tonight. Kind thoughts and prayers to you, Lori! You're in His hands and the hands of some very amazing doctors. Prayers for them too.

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  6. "You is kind. You is smart. You is important." Here's to: the 18 months is less, you can sit up and blog two days in a row and you are able to read to Zack tonight. Kind thoughts and prayers to you, Lori! You're in His hands and the hands of some very amazing doctors. Prayers for them too.

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  7. Lori, I can 110% promise you, you have never been more inspiring to me. I am sure you don't feel like that - but you are. I look up to you and your incredible ability to share and to be honest. Thank you. I am so sorry that you are going through what you are, and know that you are in my thoughts. X x x

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  8. Lori, I can 110% promise you, you have never been more inspiring to me. I am sure you don't feel like that - but you are. I look up to you and your incredible ability to share and to be honest. Thank you. I am so sorry that you are going through what you are, and know that you are in my thoughts. X x x

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  9. You brave woman!!! Brave for sharing. Brave for holding it together. Brave for battling and never ceasing looking for answers. You're awesome. Love you.

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  10. I think of you often and wish you health. You are an inspiration to all of us and by writing about what you are going through just might help someone else. Praying for your speedy recovery.

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  11. Oh Lori,

    I am sorry you have had so much to deal with... I hope that you let yourself off the hook a little to heal. The lessons Zach will learn is that it is important to heal and to fight and to give yourself permission to not be perfect! We all know that the moments you can give him are the best... Kids are resilient and more than anything he will be happy to know that you are going get better! Sending you so much love, hope, and possibility! I wish I lived closer so I could help.

    With love and hugs!
    Kris

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  12. You say that you are not very inspired lately, well, let US be your insperation. You have inspired so many of US - the beaders of the world - over the years, let us return the favor and inspire you with our thoughts, comments and blessings.

    You will get better, you will bead again and your will return to inspire us once again, but in the mean time... lean on US! ~KM

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  13. stop apologizing. there is no right or wrong, when you are just honestly baring your soul. you are so brave to tell it how it is. hang in there. there is so much worth fighting for, Z being the biggest and best of course! praying for more good days then bad, and for those little buggers to die within you, so you can have your body back!

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  14. I know I don't post to you much, or participate in bead and jewelry stuff right now, but I think about you always and read your blog and FB posts daily. Just wanted to let you know that I'm out here, thinking positive thoughts for you and having faith that better days are definitely coming. Hugs and love to you, Lori. And pie!

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  15. when you messaged me tonight, i asked you "how are you doing these days"? well, it seems like a pathetic question now, after reading everything you have been going through. i'm so sorry for all this - it's devastating to be ill and not yourself. i hope those 18 months of recovering go fast and furious. xoxo.

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  16. You are in my thoughts,my heart and my prayers. I can't imagine what you are going through. I have another good friend that has been going through her own journey and because of her I do understand a little where you are at and the mountain you are climbing.

    We all love you and you have brought so many of us together. All of use know you need to take care of YOU right now. No apologies, just give yourself a break and heal.

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  17. Oh, Lori, there isn't much I can add that others haven't said it already. Just know you're loved! Hugs and lots of love!

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  18. Having gone thru some health issues myself the past 18-20 years, I can so relate to how you're feeling & dealing with all this. It took many years to notice even a small improvement in my health, but I can promise you that you will also look back one day & be grateful for how far you've come. It WILL happen! I'm certain of it & you WILL get better! You are stronger then you know. Big hugs to you! <3

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  19. Lori, I think of you almost every day. I have Lyme's too, but nothing like what you are going through. No need to apologize, take this one day at a time. It's all you can and should do. As time goes on and you feel stronger, then take bigger steps. For right now take care of you. Don't worry about us, don't worry about bead soup party. None of us are going anywhere.

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  20. Unfortunately, your blog post made sense. I'm sorry you're facing so many challenges ,,, ones that are life altering. "Writing it out" can be therapeutic for the soul … or at least I think so. Hugs and kisses to you, sweet Lori, sent your way with all of my best wishes that things start to improve real fast!

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  21. (((((((( ))))))))). You're always in my thoughts, wishing you the best of the best. Being sick sucks.

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  22. Hey Lori...at least you now have a handle on why you've been feeling rotten for so very long. And yes, I do know what you mean about missing yourself. My husband has something similar to you which so far is untreatable & he's changed so much in the 4 years since he started to try to find out what is wrong with him. I miss the old HIM...I miss HIM so much. Some days I see a twinkling of what he was/can still be & I miss HIM tons. But we adapt and I still love HIM the way he is because LOVE is a blanket covering us with a special bond. You have that too with your family. Take care of yourself.

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  23. I know there is nothing I can say that will help, but know that I think about you often and send good wishes your way. Here's hoping that the next year will see a marked improvement in your health!

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  24. I have no words but I do have hugs and love for you Lori Dear. I also have prayer power and healing energy power to share with you my friend. XOXOX

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  25. I know you don't feel like you are right now... but you have been, you are, and you will continue to be an inspiration to me. I will continue to lift you up in prayer.

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  26. All I can say is WOW...I have only really "known" you for about a year and you are one of my inspiring people. May God lay his healing hand on you and keep you strong though this ordeal and ALL of us who know and love you PRAY for you to get well so you can come back to us and to Zack and your family. Remember WE LOVE YOU!!!

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  27. You sure are inspiring all of us in a lot of different ways!
    Teaching us that its ok to say you are in pain, giving our best fight, loving with all our might! Sure you are inspirational!

    While I hope to see you in so much pain and frustration and missing your life...am glad we finally know what it is!

    Lastly, its ok to miss yourself, but pls don't hate on your current self...she's doing her best!

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  28. Lori, we're all there for you. Please know that. <3

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  29. Lori, please know that we are all supporting you in our thoughts and prayers. You will overcome.

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  30. Bless, Bless, Bless your heart. You are one amazing, powerful, inspiring woman, wife, mother, artist! There are probably so many out there in similar situations that cannot articulate as beautifully as you have on the circumstances of your life at the moment. You help us to see some of the inner feelings that we would not ordinarily see. This alone will spur us to offer more of ourselves (especially at Christmas time) to help others in many different ways, as we each are able. Your postings & sharing are helping others as possibly no other method. In the midst of your suffering you are a blessing to others & offering hope in what may seem some of your most trying times. You are being lifted up to God in prayer for healing for you & your precious family. Blessings to you dear Lori.

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  31. OMG, you may have no idea how much sense this all makes. Again, you can put into words what I struggle to come close to making into an entire thought, which is how we connected to begin with. I, too, find it difficult to fight something that robs me of every good thing/relationship in my life. Some days I am less bitchy kitty and have the courage and strength to fight the pain and fatigue and general bleh. I lose days, weeks even. But I never forget it's worth it, worth the hour I did spend with my ever so patient family, and I'm not alone in this. And you aren't either! (Can I get an Amen !) Honestly, you're sharing this battle of health gives me the strength and inspiration to remember what's important, what we're fighting for. Because one minute spent sharing a laugh, smile, hug, with those we love beats not being around at all. Oh, and those unwrapped gifts will still be there. One of my greatest gifts and blessings this Christmas is knowing that you finally have answers, and you can and will be fixed. I have no doubt you'll bounce back stronger than ever. I love you, Girl. Thanks for being there for me.

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  32. Lori - Keep sharing as you can, I cannot imagine really how this is for you but scream rant cry and rage and keep your family dear and know that you are loved, and those little buggers are packing their suitcases day by day!!!

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  33. It's ok to feel what you're feeling. Sending good thoughts and prayers for you to stay strong and beat this thing. XOXO and more hugs

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  34. I am stunned that a person can go for so long SO Sick and their doctor never figures out what is really wrong. It is a sad statement of the situation of health care in the USA right now. My daughter has had chronic things wrong for years and our GP never delved into it. Anyway, I feel your anger and frustration. I so look forward with you to the day you feel well. I want to send you some lampwork beads that you can look at to cheer you up. Where can I send them? contact me on facebook with your address if you feel well enough. Loves and hugs,
    Patty

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  35. My doctor is not only mainstream, he is willing to think outside the box and alternative healing is welcome, in his thinking. He told me about Rife machines, the history, the inventor, the healing they do. After long research online, I purchased two different models that my husband and I are using. I suggest you check these out and contact me if you have more questions.
    Lots of love,
    Laren, Laren Dee Designs
    http://larendee.org

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  36. Be as grouchy and antisocial as you like until you feel better. It will happen. Love your hair but I think it will be pretty without the extensions too.

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  37. It must be so hard to take in all this news but you know what you're dealing with and knowledge is a very powerful weapon.

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  38. I sincerely hope that your post has in some way relieved even a tiny amount of pressure you are obviously feeling. There is a light at the end of the tunnel...sounds like there is progress on future treatment for you.

    Plus ...I detect fight in you , you may have lost a year and it may take another 1-2 to get over this ...but you will then have years & years with your precious family.

    my thoughts are with you, keep fighting !

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  39. Lori, it's ok to be angry! I know what you mean though, there are other people who are sick too, and I myself was actually told by a doctor last week that I basically shouldn't complain because there were people worse than me! But that's not the point is it? When it's affecting your day-to-day life, why should you take it lying down? Being angry, having that drive to *fight* is what will make the difference. Positive thinking, and all that!

    If you ever need any help (I know I'm across the pond, but the wonders of internet can mean lots of things are possible) with any of the hops you run, please let me know. I'd be happy to help out.

    I hope you have a magical Christmas. Gets lots of laughter, it is truly the best medicine :)

    xxx

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  40. The fact that you can continue to blog and interact with with people when faced with an on-going litany of health issues is amazing and inspiring. Not to mention that fact that you are an incredibly devoted mom. You may noy be able to be with him in the way you want right now, but you are setting a powerful example for him. I really hope you start to feel better soon.

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  41. I so admire your honesty in your posts-Staci said it best "STOP APOLOGIZING"! There is no right or wrong to feelings that we have! "One Day at a Time" are my only pearls of wisdom here! I do wish health and happiness to you-keeping you in my prayers!

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  42. I know that I would not be able to write all this down the way you have. I thank you so much for just being real. We love you lots, all of us, and even if we are not close physically to you, we are all sending you bunches of virtual hugs and praying hard!

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  43. Lori - I am so sorry you are having to go through this. You are a strong person and you will get through it all. I know that sounds trite as you battle this each day. Just remember your family and all of us out here that are praying for you. Hugs and prayers.

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  44. Hi Lori, I am glad that you found the words to tell other beaders what is happening to you. We all hope you have a speedy recovery. You don't need to apologize for illness. Maybe writing this will help someone else who is suffering too.You are a really strong woman and you will beat this.I am sending good vibes your way so you can get back to reading with Zack and doing the things you love. Zack is learning how to deal with bad stuff by watching you fight this. I am truly amazed that as sick as you are you found time to crochet me a scarf to send with my beautiful ornament.I am sending a hug for you.

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  45. Sweet Lori. I guarantee there are so many of us who love you, even on the days you can't love yourself.

    Your situation sounds both awful and encouraging since there is a way to battle it. I admire you so much for writing about it. I wish you all the strength and courage to keep putting one foot in front of the other. xoxoxo

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  46. Hang in there Lori - I am cheering for you!
    My thoughts are with you!

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  47. Be mad you have a right. It is your life and we can't compare lives or pain or sorrow or joy. When my sweetheart is sick or in pain he growls and curses the pain, says it makes him feel better. I say get mad because sometimes you need to do tha t to put up a good fight. I am thinking of you and your family and will shout a few choice words at the universe for you. Xo

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  48. Lori, I admire you and I know all of your friends here on Facebook do. My thoughts and prayers are with you kind lady. I am glad the Dr's figured out what you have and I pray for Godspeed on your recovery.I wish you love, peace and most of all, hope this Christmas. XO Laura

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  49. Lori - big hugs to you!!!! Mom and I are sending warm and healing thoughts your way!!! I hope you know we are all here for you and we support you!
    Beth

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  50. This is an excellent excellent excellent excellent post.. perfectly captures the hope, frustration, anger, and confusion that goes through you in this kind of situation. Even the tags hit it perfect. You did a great job on this, Lori, just an excellent capture. You'll look back on this when you get better and be amazed, that you got it so right. I wish I had documented my trip as well.

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  51. You are entitled to rant and rage against the hand that you've been dealt. Yes, some people have it worse but this is your reality and you're allowed to be angry. I don't think there's a single one of us that could manage this any better. I hesitate to use the platitudes like "it will get better" or "hang in there" but you have a lot of people who care about you. If you need administrative help for the next bead soup, just let me know.

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  52. Dear Lori, all that I wanted to say has been said by others more beautifully and too the point already.
    I wish there was something I could say or do that will help, but I know there isn’t. Just know that there a lot of people, including me, who love you dearly, who admire you and your strength (and yes…you may rant, scream and be mad) and who are hoping together with you that your health will improve soon. Very soon.

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  53. This is without question one of the best blog posts I've ever read about struggling with a disease. Thank you so much for sharing. I cannot wait to share it with my daughter. Prayers said for you and your family. Thank you for your courage in spite of the unknowns you are facing.

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  54. Wow. I haven't read a blog post in a long time, and I just happened to read what Linda Roberts posted on Facebook.I am so sorry you are experiencing this illness.I can't even begin to feel what you feel, but I promise to shed some tears for what you are going through. In my heart I offer a hand to hold and gentle hugs. And a tissue. I also offer up prayers that God will bless you with more and more good days than bad. That your complete health will be restored much more quickly than doctors can speculate. That each moment spent with your son will be full to the brim with joy and wonder, that Christmas will come and go with special memories to dwell on in the future. Oh and relief from pain, dizziness, nausea, brain fog and all other symptoms. Not just one prayer. Every day. Blessings Lori.

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  55. Anonymous5:16 PM

    Lori, you're such a warrior! Your friends have already said so many good words of encouragement and advice...I have to agree with:
    1. Don't apologize!
    2. Share anytime, anything. We can take it and we want to be here for you!
    3. Be kind to yourself, if you have to have a down day, embrace it with a candle or movie, or just a quiet room and sleep - what ever makes you smile.
    4. You're so blessed to have a hubby and son who care about you. What they learn from taking care of you is priceless. You are not robbing them of better time, you are letting them learn how to be caring and not self centered. I made that mistake of telling my kids and hubby I was okay and just needed to rest, (& cry behind closed doors). I should have taught them to help me and let me be a part of their lives, instead of trying to protect them from reality.
    I have fibromyalgia, and Lord only knows what else. Congestion in my lungs, wondering what a mold infection feels like? Lost my husband 7 years ago, my home, and am still clinging to my silly collectables, books, and old things that are treasures, but may also be much needed income as time goes by. (Yesterday one of my dear friends bought over 500 dollars worth of beads from my stash, and I cried, because I was so grateful.

    Laurie, you are such an inspiration to us, but when you are tired and just want to cave, send us a one liner so we know if you need more prayers, or peace and quiet, or someone to run to the store for you, or handle a project, and then....please rest!

    God Bless You, we are all praying and pulling and her for you! May the clean winds of winter sweep the cobwebs from your mind!!

    HUgs! Diane Crockett

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  56. You've got this Lori! Whine all you want, we're behind you all the way. This, unfortunately, is the epitome of collecting on all you've 'paid forward'. The good news is, YOUR 'pay it forward' bank was stuffed full so you'll beat this and still have some left over :)
    Hope tomorrow's a good day ~~T

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  57. I feel for you Lori, and am so sorry for wht you're going through. Blogging, sharing, journaling all helps with the anger, and frustration. I will keep you in my prayers!
    All the best,
    Cindy

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  58. Bless your heart you adorably sweet thing. There are no words. Just know if I lived closer, I would be there every day to help in anyway I could. Especially to take care of your gorgeous hair! My husband loves those extension and has been pleading with me to do it too! Please know love and hugs are winging your way from Indiana!

    Angi Mullis dj2isme@aol.com

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  59. I can so understand being grumpy when it seems that everything is out to get you. I know that I have been rather grumpy myself lately because it seems as though I am always exhausted. But anyways, no matter what girlfriend, we love you and have your back.

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  60. Hang in there - you WILL beat this! Sending you healing thoughts...

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  61. I'm sending good vibes your way. And I hope if you need help, you will ask. For example with Bead Soup Blog Hop. I'm sure there are many people who would be happy to help with organizational tasks. I'm one of them. You don't know me, but if you think I can help, I'm here. I work as an admin assistant for a general manager. My job is organizing! :)

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  62. It's okay to be frustrated sometimes. You seem to maintain a patience and perseverance most of the time and that is what counts the most. It's so hard, with prolonged illness, to realize that the true YOU, the person you miss the most is still there. It gets scary when you think you may never see that person again. You have so many friends and that is a blessing as are your husband and Zack.

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  63. Lori, to anyone who has dealt with a significant illness themselves or that of a loved one may instantly recognize and understand all that you are writing. Because you are in pain and because you are still discovering what it is you have / how best to deal with it, you may feel like you're whining. But I don't read it that way. I read it as someone who is trying to transcend illness and changes to find a path to healing. I wish you the best on this journey to better health. And I believe that your son is well aware how much you love and adore him. Happy holidays to you and your family. You are in my thoughts.

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  64. Lori, I am in awe of your bravery and tenacity. Sending you healing thoughts to add to all those coming your way and the incredible power of wellness at your core. You will be better!!!

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  65. I truly hope you can find some answers to things going on Lori - you really do deserve to live a healthy and pain free and happy life. Speaking of the whole 'mold' thing - make sure when you have any sort of Mold Inspection or Indoor Air Quality testing for mold and/or asthma/allergy triggers, you have an inspector/investigator who is certified - go to acac.org to find one in your area and you'll want to make sure they are also using a lab who's accredited and that they are sampling following strict guidelines and procedures. If you have questions - you can call us - this is what my hubs and I do for a living and Mike's trained over 800 inspector's in the U.S. and Canada and written guidelines for sampling and testing. Hope this helps you a bit. :-)

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  66. debra freeland8:38 PM

    I know that you are not going to feel lucky when I tell you that you are LUCKY. My very good friend got West Nile Virus, did not go to the doctor for months, got brain encephlitus and now has Alzheimer's because of this and is in a care facility. Your's can be cured! Yeah. Will send lots of prayers.

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  67. I can't even begin to know how you feel. I would like to help, but sadly I don't know how. I'll just say that your blog friends are praying and rooting for you and sending wishes for healing.

    One day at a time....

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  68. Thinking of your and yours Lori - sending some love and healing thoughts and prayers your way. And, I private messaged you about some mold stuff,...cause that's what we do for a living and if I can help you find some answers on that front, I will. ;-)

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  69. I am thinking of you all the time. I'm so happy you are finally getting some answers, and sad that your healing will be such a long process. Hang on, you will get through!

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  70. Hey! You're allowed to be angry and sad! You didn't choose this and personally I can't think of one person on this planet that wouldn't go through the same emotions.
    But also, and I believe this within the very depths of my soul, happiness is what so many people even small children, say got them through chemo and helped them beat cancer. You don't know me and I don't know you, but I am rooting for you to live! Life is the most precious thing we have and it's worth every swear word, every frustration and every tear we shed, to fight to keep! Your brain and your body may not always be working the way you want, but deep inside your heart guides your soul and you have a loving family that is rooting for you as well! So swear, scream, cry, if it helps you move on to happy and healing! You can do it and you WILL do it! I believe in you!
    Emily

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  71. Just adding my love and prayers to the many others that love you and pray success in the months ahead. Healing, strength, blessings, joy to you and yours.

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  72. Ah Lori...so glad you posted about your struggle. You do not seem to wallow and believe that you have the worst life ever...I see you working so hard to deal with an overwhelming awfulness, yet also pulling each positive fact forward and placing it front and center.
    Sending you love. Sending prayers for continued healing. So glad you know what it all is. Praying that "what it all is" leaves to bring in health. Strength. joy...

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  73. Dear Lori, I don't know you very well. But, I hope you know we are all pulling for you. And we appreciate your opening up and writing with such eloquence. But please rest and share your awake time now with those closest to you.
    You will heal sooner if you rest and rid yourself of all undesirable guilt. Get well soon! Nancy

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  74. I'm so sorry you're going through this, Lori. Wish I could help. I am going thru some similar things. And if it's any help, know that I'm another big-time reader who can't read and hasn't for a while. I went from 1-2 books a week to zero. Makes me sad. But so does not being able to walk without aid. And a bunch of other things. If you just want a shoulder to cry on, call me up! Sending you love and hugs, Sally

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  75. Job railed and suffered, so certainly you can wail in your suffering, too.
    May the answers come quickly to the medical team, may the medications do the work intended, may the healing come, may time pass quickly on the worst of days, and may you see something of beauty and value in each day. ♥

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  76. I have been feeling so sorry for myself that I had no idea what you have been going through.I will pray for you, and try to be in blogland more, Merry Christmas, Mary

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  77. Sending good thoughts your way.

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  78. Lori,
    I am a big fan and follow your blog and I am truly happy that you finally found out what was wrong with you! I fight a daily battle with fibromyalgia and arthritis and some days I have very dark thoughts as the pain is so bad and I am a very positive most the time . I also work a full time job as I don't want the financial burden to be on my husband alone, these days it takes two incomes and I am a polymer clay mixed media artist so I have to be able to buy my supplies when I need them. I guess what I'm saying is that we cannot let this get the best of us we have people who depend on us and I know it gets very hard to put a smile on your face and be nice when your body is screaming at you and you want to walk out in the traffic ! I did think about that one a bit ! LOL! But I would never do something like that because of my faith and my love for my family. Just know that you are not alone and you have to be strong and for you at least there is a light at the end of the tunnel for me I must live with this for the rest of my life. But I continue to carry on and make my pretty jewelry and crafting projects and that brings me joy through the pain. God Bless and Take Care of yourself and hang on because things will be better! Happy New year !! And please don't cut your beautiful pink hair I do love it so!!
    Debra in California

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  79. Baby girl, my heart goes out to you. I suffer, and I mean suffer, from an autoimmune disorder (among other things), and some days are worse than others. I don't think anyone really understands how devastating dealing with a chronic illness is, especially living with unrelenting pain. And no, it doesn't help to try to minimize the trauma by saying "AT LEAST I don't have yada yada yada". Your mind is your best tool - trying to maintain a positive attitude DESPITE what you see, feel, hear, etc. is key... and NOT easy.
    What helps me trying to do these things (note "trying"):
    1. Don't be mad at yourself - it impairs healing and increases depression.
    2. Don't be timid about asking for help - I don't like NOT to be in control, but...
    3. Don't be afraid to be real... like in this post... anyone who thinks you are just trying to get attention, is showing you what is in THEIR heart, not yours.
    4. I'm a Christian, so I pray and journal from that viewpoint. If you are of some other faith, practice that daily. It helps you focus on something besides the disease.
    5. You can't carry this burden, it's too big. Give it to God, and when you take it back, give it to God again.
    Here's something about my condition, it may encourage you:
    http://208.56.79.8/theopenheart/testimony/illness.htm
    Hugs and prayers to you!!!

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