Tuesday, December 03, 2013

When Life Gives You Lyme Instead of Lemons, You Can Still Make Lemonade, Right?

Just a quick note from the comfort of my bed.


I know it's been a long time since I last wrote, and for those of you who follow me on Facebook, you already know the what's up.  Forgive me for using Facebook rather than my blog, but my blog post about everything that's been going on in the past few weeks may or may not happen.  Facebook forces me to be a bit brief, and my blog has always felt like a sanctuary to me, a place where words take time and marinate (along with decent photos) and frankly, I've just withdrawn a bit because my blog was starting to be "Icky Things No One Really Wants to Hear About" instead of "Pretty Things".


However, and however, and yet still ... however.


I'll give you one of the reasons I've been remiss.


In a nutshell, after seeking a second opinion on my Lupus diagnosis, I hooked up with a doctor who specializes in Lyme and related diseases.  For the past year (yep, it's been almost exactly a year) I've felt so sick, so tired, so Not Right.  I've been taking Lupus drugs for a while but didn't  get that much better.  I always wondered about Lyme disease, but whenever I was tested, it would come back positive, and then the secondary test would come back negative, and none of the doctors felt it was worth pursuing because more extensive tests aren't covered by insurance and are pricey, so they said, "Nope, not Lyme."


Enough of that nonsense.  I wanted to get better.


Sixteen vials of blood later (which included the expensive out of pocket test) showed I absolutely do have Lyme disease.  It also showed a whole myriad of things I wasn't expecting....My mold exposure count (or whatever you call it) was high.  Platelets too high. Estrogen too high.  Vitamin D not being absorbed.  And insulin resistance, which explained why I kept gaining weight so rapidly, with or without help from pie.


Quite a lot to take in!  And quite a lot to treat.


I'm currently under a rigorous antibiotic regimen as well as using some more holistic approaches to handling everything else. I've been on a restrictive diet and have learned to embrace the nebulous quantity that is the kale smoothie.


But I am tired.  Nay, freaking grumpy and exhausted.  I have enough energy to get Zack to school and that, folks, is about that.


Me being me, I feel incredibly guilty for missing deadlines, being totally zoned out, and feeling I have absolutely nothing to contribute right now except excuses.  I have so many ideas, so many things that need to get done, so many plans.... But right now my body is running the show, and it's telling me to slow down or I'll make things worse.  It's telling me it's OK to be in a vile mood sometimes when all I can do is stare at the ceiling fan.  My life isn't over.  It's just stalled for now.  I have no idea how long it'll be until I feel more like myself.  (Months, say some.  Years, say others.)  I'm trying to embrace the chance to rest,  But it already feels like it's been a lifetime of resting, and I'm kinda over it.


I guess you could say, things sort of suck right now, and oh, I know, I should be very glad I'm being properly treated (Lord, let's hope so this time), but I'm not going to lie.  I'm Bitter, Party of One a LOT of the time, and the effort it takes to be brave and cheerful -- right now, I do not have that.  Maybe tomorrow.  Maybe next week.  But not today.


Which, in a rather larger nutshell than I intended, is why I've been absent.


I'm trying very hard to make lemonade out of Lyme.




40 comments:

  1. One correction: NOT excuses, reasons! It'll be great when you get past this.. and very very cool of you to let others know what's going on. You'll do great!

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  2. Just take it one day at a time...1 foot in front of the other. At least you've found yourself a good doctor finally. Big hugs to you!

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  3. Just take care of yourself, that's what's important.

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  4. Again, we seem to be somewhat in sync physically, and I have massive guilt for being the absent, non-supportive friend(N) th due to my own 'Mad-At-The-World Syndrome, wondering why all these glorified Dr's, aka, specialists, are playing Pin-The-Algia on the Patient game. I'm sick of being a payday everytime I show up, whether they have a BS answer or not. And the more I learn, the angrier I become. So, I may be in the "pity party" stage. I'm so, so, so happy you have answers and are one day closer to getting your fire back, not that it was ever gone, just a bit dimmed. This is why you continue to inspire me to be less 'doom & gloom' and more 'it'll all be better soon". I love you so much and you deserve a happy, creative, pain free life. Thanks for helping me hang on, one day at a time. <3 Miss you

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  5. Lori, my long lost twin Sista, we are taking this journey together. If we lean on each other....we can stay upright.....and we WILL get better....we HAVE to.....we have way too many adventures to take together. Not to mention Zack's Fridays with Miss Dottie.

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  6. I agree with Red...not excuses, but reasons...how many people have gone to the dr and told they have one thing...then come to find out months later it is really something else... Keep your chin up..should be easy while you look at the ceiling fan ...we are here for you...and you can take as long as you need to heal. Just drop a lime seed now and again.. Squeezes!

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  7. Lori, I feel for you!! You are such a great inspiration and example for a lot of people. And it is ok to be grumpy and angry and disappointed and what more. You have a whole lot to cope with. I guess what I wanted to say is, you are only human. Nobody expects you to be happy and wise and strong all the time. Ok perhaps you yourself ;-) Just take it one step at the time. May it be a little step, that doesn't matter! You can fight this. You are strong! You are a great person! And you are human. Big big hugs

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  8. I wish you all the best, now that you know what you have a real treatment can start. I don't know if this is ok or not but I am following another blog for years now and she is fighting lyme for over a year now (confessions of a recovering cynic http://tershbango.blogspot.de/). I am sorry if this is not okay, I just thought that maybe there may be some more important informations and just the normal problems one could advice each other? :)

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  9. Wow you have been through it but hopefully this is a step in the right direction. Rest and recuperation is key, however boring it may be. Take care.

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  10. Lori, I so admire your persistence through all of this. I'm glad you're finally getting some answers and I know that you'll get on top of it all, one day at a time. Hugs!

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  11. I'm glad to hear you at least have a firm diaganosis, and can finally move forward (at what ever pace it will be). I hope you're feeling better sooner than later!

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  12. So glad that they have found out how to help you get better! It is all part of a bigger plan that is in store for you!If you have never done any meditation...that might be a good thing while you are having some quiet time....a body at rest heals faster :)

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  13. Isn't it awful to HAVE to rest? To not have the choice to rest?
    I get it.
    Please don't beat yourself up about taking life slowly. It will not last forever.
    Thinking of you.

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  14. I am so sorry that you have been ill. I hope things look up for you. Wishing you and your Family all the best this Holiday day season. Love you!!

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  15. Oh, my but I do know so very well what it feels to be stalled out in life. Different circumstances for me for sure. Here for you anytime. Many hugs and lots of love.

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  16. My Dear Sweet Friend, you are always there for everybody else, with a kind word and a smile or something funny!!! You have saved countless lives from boredom and pain and depression, [mine being one of them]. So now when you are at the very first brick of your yellow brick road, remember there are countless scarecrows, cowardly lions and tin men to follow you and cheer you and be silly just for you!!! They will be there to help you fight the flying monkeys and help you melt the witch [just call her lymeee] ! That is how friends work, when they need you, you help and love and spread cheer! When you need it they are there to love and spread cheer!!! you are very well loved and prayed over and for in nearly every state and in a lot oF countries!! Simply put you are LOVED!!! Be Blessed friend!!!

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  17. I think you are incredible and very brave and thank you for sharing with us a very difficult journey. We are all behind you and pray for your well being. Keep on fighting Lori you have many of us in your corner routing for you. My thoughts are with you!

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  18. You are much less bitter than a lot of people I know who have a lot less going on. Now that you finally know what it is, they can give you the right stuff.

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  19. Lori,What can I say,you are a very strong woman with all that is going on in your life its time to take care of you.You have given so much to the group and its time to give you ''Lori ''a much needed rest.

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  20. Anonymous9:54 PM

    Oh Lori, it's wonderful that you are getting answers but I'm so sorry for all the crap you have to wade through! I have JUST the insulin resistance part, and I struggle with that on a near-daily basis. You are so strong and courageous, and you're an inspiration! All the love, joy and peace in the world to you, beautiful lady!

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  21. I will send you good vibes for your continuing recovery. If you have the energy to get your son out the door and then be bitter while focusing on the treatments you need to do, I say you're doing everything exactly right. As someone who only knows you through your blog and the jewelry I've seen there, you are still "doing" things while you are focusing on getting better. The pieces you have made are still out in the world inspiring people like me. Your presence is still very much felt.

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  22. Lori, I am so glad you finally know what it is so you can get the correct treatment. I can't believe all the things that are wrong with your poor body, though! I wonder if some of these things are because the Lyme went untreated for so long? My good thoughts and prayers are with you for a great healing! I look forward to the time you feel well again. <3
    Patty

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  23. I sooooo understand! I have a auto immune system 'issue' that is similar. The tests, tests, tests oh ya and tests that they didn't find anything and then, on one obscure test they found it (almost 10 months later). The doctors treated me like I was just being 'winnie', some of family treated me like I 'just wanted attention' and I always felt like CRAP! I will tell you that it will pass (hopefully) and to take care of yourself. I felt guilty as well, because I was MOM, but then I realized that if I don't get over this (by taking care of myself) that I wont be there. And then where would everyone be?? The end is that ONLY you know how you feel and how much you can/can't do each day. ONLY you know when you are ready to do more. ONLY you can inspire us and yourself to be more! ONLY you are YOU!! Take care of yourself and remember that we are all here for you when you come back!! ~KM

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  24. Lori, you always have just the right words for us, I wish I had the same for you. I can only imagine how difficult it has been, given all that you have done in the past, both in the jewelry world, and in your military career. What I do know about you is that you are not a quitter, and that no matter how many things get thrown at you, you find a way to work through them. Just like the testing for the lyme disease. And the people that tell you months and years of recovery don't have any facts based on Lori Anderson. They have their statistics based on other people. That don't have your drive, your grit, your determination.
    I totally believe that this is a stage in your life, not a permanent situation. And that it is ok to scream, and cry, and throw things. Because you are so much more than the sum of these conditions.
    God Bless, and much love

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  25. Melanie Swope8:28 AM

    Lori, I say make lyme-ade !!! Better yet make Lyme-a-ritas !!!Lol...

    Stay strong and remember when everything else sinks to the bottom, HOPE floats. Melanie

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  26. Yep, I second what everyone has said - so glad you finally have a diagnosis so you can get better and taking time for yourself and your family is most important. Everything else is second. Best wishes my friend!!

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  27. Hi Lori, I hope that this time you finally have the right path. The saying is Dr's are practicing medicine. It's too bad that they practice on us.I hope that you feel better soon. We all understand that you aren't feeling like posting right now. Thanx for the update. You are a beautiful strong woman and I feel that you will find your way through this.I wish you all the best.

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  28. Lori, I'm so glad you've found the cause, now you can start to heal.
    This is the hard part. Letting go and letting the body work it out.

    I hope you heal swiftly!

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  29. Lori, so glad hey finally foun ou what th problem is. Are they still saying you have lupis? Hopefully the meds will kick in nd help you get btter real fast.

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  30. So glad they finally figurd it out. Do you still have lupis? Hopefully you'll start feeling better very quickly.

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  31. Love you Lori *hug*

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  32. Lori, I'm so proud of you to have the courage to keep seeking help from new doctors, alternative med, ect. I know how difficult it is when all you want to do is pull a blanket over your head and wake up when you feel better. I truly hope your new docs are helping to lead you down the path of recovery. You are not making excuses...you are sick. There is a difference. Please quit beating yourself up....you have such a lovely face!

    Angi Mullis dj2isme@aol.com

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  33. "This too shall pass" is one of my ways of getting through the days that are most difficult. Just you knowing what you are up against can be a huge relief. Honor yourself and how you are feeling! Thank you for sharing and I do follow you on FB. You are brave and loved Lori Dear...

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  34. Hopefully you are finally on the road to recovery. I've been dealing with unknown medical problems and it's so frustrating to not have any answers. Then, when someone does suggest something, it's hard to have faith that this time, things will work. I am not a patient person so it's the "waiting for things to get better" that drives me nuts. Hang in there, Lori. You have a lot of people cheering and praying for you.

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  35. Listen to your body and do what you need to do to get healthy. The rest will wait and that has nothing to do with excuses. I agree with the comment that it is about reasons. Never apologize for that. Know that you are in my prayers. And find that 'something good' in every day, Miss Lori. Enjoy the day. Erin

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  36. First of all you are sick, very sick and these are NOT excuses. I'm glad you got a diagnosis and now I hope you can find the right treatments for all that you have going on. Your body does need rest so it can heal so don't be hard on yourself when you just feel like staying in bed. Take care and let your body and the meds do what they can. Sending prayers for swift healing and hoping you get to enjoy your holidays with those you love.

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  37. I do think of you even when you are absent. I will be here when you get back. Dream big and keep a list.

    I always thought it was okay to angry, bitter, sad... these are human. (Of course it is more pleasing to be happy, joyful, at peace...) Harvest what you can to propel you forward and leave the rest behind when you are ready.

    Do what is best for you, which includes those that you love. Do what you can.

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  38. First reaction upon reading this? "Well, sonofabitch." Then, thank goodness you've finally gotten some answers that seem to make sense. Do what you need to do -- be bitter when you feel like it, laugh when you want to, rest, recuperate, hug Zach frequently, and trust your body to tell you what it needs. You have lots of people out here pulling for you!

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  39. Welcome back to blogland even if only for a brief visit. Good luck in the next part of your journey. Sit (lie?) back and enjoy your family this Holiday season! ~~T

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  40. "I've been on a restrictive diet and have learned to embrace the nebulous quantity that is the kale smoothie."-- So well written. It makes me smile. :D
    For the love of all that is good- BE *WELL*. :) oxox

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