What have you done? Getting/taking/having your life back. Let's help each other!

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Date Joined Jan 2010
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   Posted 9/15/2010 6:08 AM (GMT -7)   
We've heard the sayings, "If nothing changes, nothing changes" and the definition of insanity, "Doing the same thing, the same way, and expecting different results."

Lately, everywhere I turn I am inundated (TV program, magazine article, blog, book in dentist's office, etc.) promoting the idea that we must be our own best advocate for our health…in order to get our health back…to have optimum health. I definitely agree with that. Getting well is going to require more than just taking a pill...at least that's been my experience.

I think as we each share things that WE are doing to get our health back…we can learn from each other, spur one another on, and gain our health back even faster as we DO IT…and continue doing those things that help or have the potential to help.

This morning a picture came to my mind of an experiment we did when I was in elementary school (why do we have those flashbacks?? I don't know). Anyway, you take a celery stalk and put it in a glass full of red colored water. Then you watch…the celery takes in the red colored water and finally the ENTIRE celery stalk gets streaked with the red dye from the bottom all the way to the top. That is pretty cool…but when we're talking about our body that can be pretty cool or that can be pretty yucky.

Keeping that in mind…consider what "red colored water" we are putting into our bodies: poisons from the food we eat, the air we breathe, the water we drink, the EMFs we are exposed to from our computers, cell phones, lotions/make up we wear, the medicines we take, not to mention the toxic vibes from negative people with negative emotions and comments, the stress of situations around us and even…well, you get the idea.

How am I advocate? What am I doing in regards to getting my health back and getting rid of toxic "red colored water" in me (body, mind, and spirit) in my life? First of all, I am reading, reading, reading, and educating myself. Then I have taken what I have learned and put it into practice--that sentence is the most important part of what I am sharing. As finances permit we have switched to organic food; I am no longer using lotions and makeup that block the pores of my skin; I do not drink the water from my tap (got the report recently on our city's tap water…yikes). Plus I am doing things to detox my body (ie: dry skin brushing and detox baths).

I look forward to posting some links and sharing more later…but for now…this post is long enough. smilewinkgrin

What about you? How are you advocating for you, what are you doing to gain your health back? I look forward to seeing what you have to share.

We will get through this and come out the other side with...optimum health! yeah

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   Posted 9/15/2010 6:41 AM (GMT -7)   
I've worked hard to get my health back. Thing is, I already led a very healthy lifestyle before my treatment, so what next? I worked on my attitude, because I believe the mind is central to the process of healing.

Here are four things that really helped:

1. I stopped "holding up the ceiling". If things were not perfect, I let it be. I let people help me and I simplified everything and made sure that I was content with the results. No matter how little I accomplished in a day, I was pleased, and when I accomplished a great deal, I celebrated.

2. I stopped regarding my antibiotics as "poison". I was closing my eyes, gritting my teeth and taking my medicine even though I hated everything about it. Instead, I started to regard the antibiotics as the cavalry that was going to bring help and relief to my beleaguered immune system. I visualized it charging in and killing the bacteria, and hunting down the craftier ones in hiding. So some things get trampled on by the horses -- small price to pay. While before I had dreaded dosing time, I came to look forward to it and to welcome the opportunity to change up to other medications or increase dosages. Yes, it was very difficult to look forward to yucky Mepron!

3. I made sure I didn't regard myself as a victim, didn't feel sorry for myself, and did not regard this as any kind of tragedy. There is always someone worse off than you. Further, I did not expect anyone to understand or be particularly helpful, but welcomed it if the were.

4. I identified what it is I live for and held on for dear life. I also made a short and do-able list of things I want to do when I am well and kept my eyes on the prize.

Good Healing, everybody! :-)

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Date Joined Oct 2009
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   Posted 9/15/2010 11:08 PM (GMT -7)   
Wow, great ideas. Achieving, I especially needed to read #2; I am going to start doing that, too.

Something that really helped me is shedding the self concept of "sick person" which induced me to put many good things in life on hold until I was feeling better. My replacement attitude is that I am strong to fight these infections, and I am living life now because now is what I have.

Another thing that helps me is to be as outward directed as I can. When I am doing something for someone else, I am not focusing on my pain. My life is more rewarding, and I feel healthier being involved.

I have Lyme; it doesn't have me.

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Date Joined Aug 2010
Total Posts : 317
   Posted 9/16/2010 6:17 AM (GMT -7)   
I second Rose....achievinggrace....you summed a lot of things up very well. I had to step back a LOT these last few months. I was always afraid to show weakness or the fact most days I felt like I was still under the bed because I thought it was all in my head. Now that I'm officially diagnosed and I've done a fair amount of reading on Lyme, I know I'm allowed to be less than perfect. When somebody asks me to do something now I can say "I don't know how I'm going to feel then, but if it's one of my good days, maybe I can do it..." My daughter told me they may be visiting in October. I told her that was great, but she might have to clean house and cook. She said fine.

And, Rose, you're right....when you can't do for yourself, then do for somebody else. I've said that for years....boy, I've helped lots of people!!!!!!! Not to be confused with wearing yourself out for somebody though.

I do allow "wallow days". While overall I don't think we should feel sorry for ourselves, I do think we should allow ourselves time here and there to just sink as low as we want and, well, just wallow. Set a timeframe, then pull up your big person panties, and continue. Herx days are separate. We know we're downright sick, and sick is not the same as a good wallow.

Maintain a sense of humor even if it's a black one. I look at things differently than most people and probably offend lots of times with my attitude. I can make death and dying jokes, which most people just don't get....and the ones that do, I call my friends.

Hippie Hiker Chick
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Date Joined Aug 2010
Total Posts : 77
   Posted 9/16/2010 8:31 AM (GMT -7)   
GREAT Topic!

Achieving Grace - I loved what you said - lots of truth there for me as well. This week has been really rough as far as medication/supplements go - was crying the other night thinking I physically cannot swallow one more pill - but I pushed through thinking similar to what you said.

I've made some recent diet switched - no gluten or dairy and am seeing and feeling some good results from that. I had some allergy testing done showing allergies to those two things so I might as well give my body a rest from fighting food allergies AND Lyme, lol. Even though I have really wanted to kill someone for some bread or cheese.

Diet wise - find little things that you LOVE that are on plan. For me = PEACHES which are in season now. I also like to experiment with cooking and make beautiful healthy dishes. Dressing it up a bit helps. I canned some tomatoes last night for the first time ever and it made me feel very zen happy.

When I get a tough craving I ask myself "Do I want to feed me or the spriochetes?" because most of my cravings are for sugary things.

Setting myself up for small wins each day. I walked up the steps to work today for the first time ever (3rd floor). This is a HUGE win for me. Sometimes it's talking a walk or making it a whole day without a nap, but little attainable things.

Not being a perfectionist.

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Date Joined Aug 2010
Total Posts : 317
   Posted 9/16/2010 11:20 AM (GMT -7)   
"You Are What You Eat" becomes so much more important when you're sick with anything and I think with Lyme it is critical. I, too, have given up the sugar (ok, 99%....) and wheat products (again 99%). I haven't let go of the dairy yet because I do enjoy the fermented things: cottage cheese, plain kefir and plain yogourt. I drink mostly lemon water but sometimes plain ole water. I allow myself 1/2 cup of weak tea w/half and half in the mornings before I do my breakfast drink. I try to get some complex carbs, i.e. beans and brown rice. I buy hummus but am planning on learning how to make it on a regular basis. Boiled organic eggs with fresh tomatoes....grabbing them out of the garden while they're still in season. I love rainy days and naps. I also talk to God and have found Him to be a great comfort.

JunkYardWilly, I never really drank beer or alcohol but I was addicted to Pepsi....I feel for you and hope you savor that one beer per month!! Stressful relationships...a big yes. I've distanced myself from lots of people and the beauty of that is I don't miss them!! They weren't friends....just nosey energy suckers.

daisyrlb...thank you for this post.

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Date Joined Mar 2009
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   Posted 9/16/2010 5:56 PM (GMT -7)   
Great advice everyone! Thanks.

I myself have learned to appreciate how well I am and not concentrate on how sick I am.

I have just recently learned (through antidepressants) to get rid of the jealously of my healthy friends and appreciate their friendship, to get rid of the resentment of their going out all the time and appreciate my warm cozy home and loving family and let go of the anger and learn to smile again.

I am no longer hopeful that I will get well but determined. I am convinced that I can exercise, even if a little bit.

These positive changes (and I still have pity days) help to make me enjoy my naps and relaxation rather than feel guilty and stressful over sitting on the couch.

One of my favorite lines from a song is "Everybody has something, don't they?" and its true. This is our challenge, we have no choice but to face it. Hopefully, my positive attitude will head me in the right direction as I know my anger wasn't getting me anywhere.
Lyme, erlichosis, bartonella, herpes, EBV. 4 years undiagnosed despite 10 drs.
Current meds: tetracycline, amanatadine, neurontin, xanax, valtrex
Prior meds: amoxicillin, probenecid, doxy. IV refused by insurance.

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   Posted 9/17/2010 3:07 PM (GMT -7)   
Hi Daisy (Rhonda),
Great topic!  That quote "definition of insanity: doing the same thing, the same way, and expecting different results" always stayed in my mind after I first read that quote so it's really interesting that you posted that..
When I was sick I refused to let lyme define who I was.. I did things to remind myself who I was even during my sickest days, for example when I was mostly bedridden, I crocheted a lot (for some reason I crocheted Angels to give as Christmas Ornaments for my neighbors and friends).   Then I taught myself how to knit because I wanted the challenge.. 
I think people can get lost when they are sick so I think it's really important to do positive things for oneself as well as being kind to yourself... 
How is Gary feeling?
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

Regular Member

Date Joined Jan 2010
Total Posts : 277
   Posted 9/17/2010 10:17 PM (GMT -7)   
I sure have been encouraged by reading what everyone shared, and I find myself wanting to respond…so here goes…


WOW! What you shared are very practical and powerful things that truly do help. Four things that you communicated so well that make all the difference in the world. Thank you so much!!!

I hope you don't mind that I have copied your post and shared it with some other people…along with the link. (I did give you credit.)


I am so impressed by your "replacement attitude…living right now because now is what I have". Yeah, like that song says, "Today is the first day of the rest of your life." I really like that song and that truth! Life is just too precious not to live it.


Your post made me chuckle and downright LOL.. I like the way you write. OMGoodness…what freedom you have to share, be open, and honest.

You share, "I know I'm allowed to be less than perfect" well, I do know what you're saying…and the last time I looked…ain't no person perfect. Ain't that gooooood! Oh, yeah! We can relax and be who we are!

Wallow then "pull up your big person panties…" now I really do like that. I got a good endorfun fix. My husband just looked at me and asked me why I have that big grin on my face and keep laughing (and that's the truth!). I told him what you said!

I admit, I aint black but I do have some strange humor that most people just don't get. Seriously. I can be watching a movie, and I'm the only one laughing (that's kinda weird when it happens in a movie theatre) or I'm the only one not laughing, I even have some death jokes…but I mostly keep them to myself (I guess you got more friends than me, LOL). OK so here is one (although I really did feel this way)…let me know if you get if…if not that's ok I got my big girl panties on.

There were times when I was so sick with LD that I was afraid I was going to die, later when I got so sick, was in bed and could hardly move, I was afraid I wasn't going to die. Ar ar ar ar ar ar LOL!

If nobody else laughs at that…it's OK…I just laughed a whole bunch for all of us plus I got my….well, you know…on...

about God…I don't know where I'd be without Him…and that is no joke!

Hippie Hiker Chick,

Each of the things you shared that you're doing is HUGE…You are so disciplined and you don't settle. I mean…diet changes!! And you don't only cook beautiful healthy dishes but you dress it up a bit!! Canning tomatoes!! Huh, I've never canned anything!! Zen happy sounds good.

When I get cravings…well, we won't talk about what I do…let's just say I needed your advice.

Your last comment, "Not being a perfectionist"…and to think at one time I really thought there was such a thing. LOL

You rock!!!


Sure can see your heart…and I appreciate what you shared. The things you've done FOR YOU for YOUR HEALTH really are life changing…for the good. You are so worth it!

That is amazing your beers being cut to one a month. I'm impressed! And eliminating stressful relationships. You'd think family would be the ones to understand the most, but it doesn't always work that way. Important we take care of ourselves.

You are far from weak…I'd say you are a very strong person…and in the midst of it all you've even become more compassionate. That's Amazing! And God's Amazing Grace is upon you.

I, too, find great comfort in God.


Attitude sure makes a difference for me. Thanks for emphasizing that. Each day we wake we get to choose our attitude…and sometimes right in the middle of the day we get that opportunity too…(Yahoo or Yikes depending)

When you were at the crossroads of positive/negative…healthy emotions/unhealthy emotions….etc….I commend you for choosing the path that led in the right direction…positive, relaxing, hopeful path that leads to healing.

Choosing THAT path may not always be easy…but it sure does a body, mind, and spirit good! Peace.


I have been reading this thread and looking forward to responding…I thought I'd be able to tonight…was glad to see you'd posted. I always enjoy reading what you have to share. You are a wealth of information and a positive ray of hope on HealingWell.

As I think of you laying in bed sick and crocheting Angels as Christmas Ornaments…that is surely thinking of others. I look back on my days on abx and in bed I just slept…you have some strong gumption girl. You do have "mighty big girl panties"! LOL

Thanks for asking about Gary. He had an exceptionally good day today. When we were in Florida visiting family he had some of his best days ever. And it sure was a good thing because our son had us going…and going…and going…It was lots of fun. He'll be posting on his thread sooner or later…he's been playing catch up...

I agree it is important to do positive things for oneself. Isn't it strange that people who are compassionate will often be kind to others who are sick and yet when they get sick they don't always show the same kindness.

Whew, can't believe the time…well, that was fun…friends, there is only one of you…and you are very special!!! I'm with Deejavu, be kind to yourself!

Love, laugh, live and give…something you all do very well!


PS: What else? Well, I have something else to share but it's past my bedtime now. "Getting/taking/having your life back...what have you done?

Post Edited (daisyrlb) : 9/18/2010 6:39:06 AM (GMT-6)

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Date Joined Apr 2009
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   Posted 9/18/2010 10:43 AM (GMT -7)   
I have read ALL of this and appreciated ALL of this and I am saving it. And I believe it.

It is very strange, that when I first came to this post, (over a year ago?) I was able to participate in threads like this -- I was able to at least STATE the positive. And somehow, I have lost this. How did this happen?

I pray and beg daily, even down on my knees, and somehow I feel forsaken at the worst of times. I know that I am wrong and I don't know how to get past it. I feel 'poisoned'.

I have NEVER regarded my abx as 'poison'. (well -- except for the Doxy which looked and felt like it came from the Devil himself) I look at my augmentin and deeply believe it will eradicate the spirochetes. I just need help w/ the other stuff, too.

I HAVE been spending more time w/ my (grown) kids and I usually feel better when I do. But then I also feel guilty about the chores I'm not doing (a dirty home!) and the time my dogs are left alone. There is so much guilt in me, I don't know how to get past it.
And I can't seem to get past an ever growing resentment that I have to push myself all day, everyday, when I really feel too sick and exhausted.  It's been my own choice to end up alone, but now I resent that  because I am soley dependent on myself -- there is no one else to feed us.  I am so tired of having to go and go and go.

I appreciate you all, because I am seeking and begging for answers. I don't intend to spoil a very positive post, but I must comment that too often, while down in the 'pit', this is all too difficult. I'm stating this for the others who may still be struggling w/ this, as well.

But I will TRY. Because I know that you all are right! Please stay here for us!
Thank you, all

Post Edited (+Lyme) : 9/18/2010 11:47:14 AM (GMT-6)

Regular Member

Date Joined May 2010
Total Posts : 74
   Posted 9/18/2010 4:21 PM (GMT -7)   
What a great topic.
What wonderful people here and what beautiful words. You are quite eloquent. And funny. And yes I got the joke about
being afraid of not dying. Been there.. :)

What I do to feel better and get through is read inspirational or spiritual type books. I start the day this way.
I feel I NEED to hear positive things while my brain is turning toward the darker negative things. Its really a fight sometimes.
But when I am feeling well, I really try to get a hold on the positive in my life to hopefully carry me through the darker times.
I ask god for help also. I must say most times, he answers and I feel relief.

Physcially what I do is drink lemon tea each morning, it is antiviral and anticeptic and balances the PH.
I also drink Aloe Vera Juice which is also antifungal, antibacterial and helps the digestion.
I try to spend a few minutes sitting in the sun, and walking on the grass barefut to balance my nervous system.
I do deep breathing exercises that help with anxiety. I find Qi Gung helpful.
I started getting massages. And I love them. It reminds me that there is joy and pleasure in life. I think we can easily
forget that when we are sick for long periods.
I try to take things slower and to check my physical state before doing anything so as to not overdo it.
I do detox baths and just bought the FIR sauna. Still getting used to that. But that warmth is very soothing.

At first I did feel that this disease was a tragedy for me as I have always been very healthy and active.
BUt I have come to learn that I am not the only one with this disease and am not the only one who is fighting hard to
get through the day sometimes.
Thanks to you fine folks and knowing that, it gives me strength to get through. You dont know how much this has helped me.
When I have a flare up and wonder, how am I going to deal with this?, I remember you out there and I know, if you can do it,
then so can I, and we can do it together.
So I think the last think I want to mention is being grateful for what we do have and for all the good days. And of course
for good people like yourselves.
Big hugs to all of you,


Regular Member

Date Joined Aug 2010
Total Posts : 317
   Posted 9/18/2010 4:40 PM (GMT -7)   
My mind isn't focused enough for a lengthy post, but wanted to say just a couple of things.

+Lyme, it will get better. One thing you can be thankful for is a house that does get dirty. Maybe you need some time to wallow. If you're going to wallow, make it the best wallow you can....then....well, I said all that in my previous post about what you need to do once you're climbing back out.... I know about frustration and resentment. I've watched my friends for 40 years get ahead, plan their lives and careers. I've encouraged people to take a new job or try and new hobby, and have watched them succeed. All that while I stayed behind and tried to find answers to my health issues because the symptoms were/are too bizarre for dozens of doctors to figure out. Anything I've learned, I've learned on my own. I would be proud of that if it hadn't taken so long.... So, again, +Lyme, you will endure and you will succeed. I send peace and light to you.

Thank you, Rhonda, for your kind words. I do like to write although I don't usually have the wisdom that most on this forum do.

I started doxy yesterday and can relate to it being from the devil himself....it and my stomach still need to become friends....or maybe not such bitter enemies...

My very best to all tonight.....

Regular Member

Date Joined Jan 2010
Total Posts : 277
   Posted 9/18/2010 8:42 PM (GMT -7)   
Dear +Lyme (I read your name as "Cross Beats Lyme", "CBL"):

Thank you for keeping it real. I appreciate you opening up and sharing with us. I wish you and I could sit down, face to face, and talk. Feel free to email me anytime.

It does seem strange how…pit…can sneak up on us and we wonder as you say, "How did this happen?" Sometimes we may be able to figure out how and other times not. Regardless…pit happens. I am so sorry that it has happened to you and you are having such a rough time.

Personally, I believe that the first step of healing "recovery" (body, mind, spirit…all three) is admitting "pit". Get it out in the light…exactly what you've done in sharing your experience and your emotions. You've done good in expressing yourself! It is important not to keep it bottled up inside. And just because we believe (the posts others have shared in this thread) doesn't mean we always feel it. Sometimes we feel like we are in a pit and it stinks. Pit is not fun. I would imagine most people who've experienced Lyme have experienced pit…the good news is past tense…experiencED pit. I am praying…this too shall pass for you, CBL, and soon.

You share, "It is very strange, that when I first came to this post, (over a year ago?) I was able to participate in threads like this -- I haven't met one person who was able to at least STATE the positive. And somehow, I have lost this. How did this happen?"

CBL that's ok. You will again. You have been here for others and now it's our turn to be here for you.

You share, "I pray and beg daily, even down on my knees, and somehow I feel forsaken at the worst of times. I know that I am wrong and I don't know how to get past it. I feel 'poisoned'. "

Feelings can be so deceptive. Feelings can be such liars. We can feel forsaken…but actually the truth is (and I'm not telling you anything you don't already know) we are not forsaken.

Psalm 42 has comforted me and God has used it to draw me out of the pit. It starts out with a word picture of a deer…I think it's perfect for Lyme Disease, God knew.

For me when I am in the pit…at the very bottom…sides crowding in around me…I look up (see Psalm 121:1).

The practical things that Kodak (you got my joke!) and Mamyou shared was some really good stuff. Perhaps others will share some pointers too. In the meantime, I wonder, have you read the "stress" thread? That thread has helped me in reassessing my life, priorities, and just having more fun…like I always used to do…and like I am again. Having fun, doing the fun things you enjoy is so important…and letting go of those things that pull you down is just as important too. Following is the link


CBL, I have been praying for you since I read your post. May you sense His presence and peace.

Hugs, Big Hugs,

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Date Joined Aug 2005
Total Posts : 4304
   Posted 9/19/2010 9:20 AM (GMT -7)   
Hi all,
Rhonda, first of all, what touching words you wrote... touched my heart in such a big way..
+Lyme, I admit I was not always positive and I admire you for being so open and honest..  That by itself takes strength..  I remember so well how I would get really depressed from being sick and there were times when I actually planned how I would end it all..  I thought about drowning myself in my pool but then I thought of my 2 dogs who were alive back then (they are both gone) so that was my reason for not following through..   I felt the darkness surround me totally and it was hard for me to pull myself out of it.   During one of those dark days I made a mistake and called my mother and told her I wanted to end it and instead of talking to me, she hung up the telephone and called the cops..  Nice huh?  I never got any support from any of my family members...  so be it.. 
Just wanted to let you know that you are not alone and I'm here for you as well..
I had a special "talk" with my Angel that sits on my night table for you today asking her to watch over you and help you..
Hugs to you and everyone else,
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

Regular Member

Date Joined Jan 2010
Total Posts : 277
   Posted 9/21/2010 9:11 PM (GMT -7)   
+Lyme (Cross Beats Lyme), You're in my thoughts and prayers!
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