Encouragement

Tulips - 2012    Photo Credit BMD Photography 

After many emails, comments and even phone calls, I wanted to clarify and enlighten all of you a bit more on my decision to step away from all things Lyme.

I made this decision recognizing that the more I avoided focusing on the actual illness and the symptoms, the more I felt better and "normal" again. I am not saying I am cured, because I am not. I am without a shadow of doubt, aspiring to getting back to 100% - my old active, boundless energy, athletic, social and adventurous self.

What I am trying to say is, as I ignored and avoided Twitter, Facebook, Lyme discussions, I found myself able to do more and most importantly found I was happier. I see the glimmers of hope now - I am focused on pulling through this HELL. I chose to focus on the positive and envision myself healthy again, as opposed to focusing on the worst case scenarios...  I realized I will never have the answers to "how could this have ever happened to me?" And I realize - the answers are not all that important in the grand scheme of things. All of the google searches on Lyme, co-infections, heart issues, neurological issues - long-term effects - short term craziness, memory loss - dysautonomia - all of my day long quests in the past to seek answers about all of my medical issues DO NOT MATTER... They do not own me - I am in charge of my life and my happiness... and so are you...

So with that, I encourage each of you to try a Lyme detox day - or an hour ... set aside a set amount of time and do not think about your symptoms, medical results, medication, rehab, debt, doctors, whatever is related to Lyme. instead take that time and do something that you LOVE - meditate, watch a movie, listen to music, look at photos (if you cannot get out of bed). if you can get out of bed- which I encourage even if you are in a walker or using a cane - go OUTSIDE and breathe in the fresh air - appreciate the beauty around you whether it be a big city or rural farm. Maybe cook something or write a poem. Look for the magic- capture the magic and savor it. See how you feel after your Lyme detox and try to slowly build up more detox days... (BTW this is not just a Lyme detox it is a Twitter and Facebook Detox...  you don't need Social Media in the context of LYME everyday). I also want to add something here - I would have days where i was so dizzy and off balance I really thought I could not make it out of bed, but I had no choice, I have a dog, and she needed to be walked. I would get out of bed, unsteady and not well, and I would throw on my UGG boots and walk my dog. The minute I walked out the door, I would feel stronger. The longer I walked, the better I would feel. I am not a doctor and you obviously know your own limits better then I, but i just want to share this with you- in hopes it will inspire and provide encouragement to push yourself past the boundaries you set for yourself.

you know we are all facing similar issues and we all love and support one another. However, you must support your own well-being first, and in order to do this you must take a step back to find and cherish your own inner-strength in order to help others. This is exactly what I am doing right now... and suppose I have been for some time- realizing it is helping my healing process greatly. ( one last point- this detox doesn't just apply to people healing from Lyme - applies to all who are facing a difficult time)

As i said, please do not hesitate to email me or stay in touch- I will be back to help with advocacy and awareness , but i can't do this without dropping my own inner-battle with shedding the label of Lyme from my definition as a human being.

Be well and let me know if you try the detox!
XOXO LG

The Death of Lyme Girl as YOU Know Her

lily of the valley 2012 - photo credit: BMD photography

For some time now, I have been contemplating completely removing myself from "Lyme." I obviously will never be able to completely rid myself of the long-term permanent physical effects that Lyme has taken on me, but what about the emotional component of it? Will I ever be able to shed the emotional toll it has taken on me? Will I ever be able to stop justifying my exhaustion, loss of balance, headaches, vertigo, etc by saying, "oh I have Lyme."  Before having Lyme, I have never ever had to justify anything about myself, and now I feel like it is all I do. Sure Lyme has made a huge impact on my life - in some areas for the worse and in others for the better. I dealt with it by boiling down all of the components, then I chose to try to write about the positive aspects of it... yes there are positive things that have come out of  going through this miserable experience! please never forget to look for them!

I have tried to convey that one can make an insanely bad situation better, by yielding to it first, then accepting it, then looking at what hurts most - then forgiveness (forgiving yourself first and foremost) and finally always believing that you will get through this and you are never ever ever alone. I also set out with a goal to encourage others to stay active- go photograph their favorite subjects, write, play music, listen to music, garden, and go for walks even if for five minutes.

I am very pleased that I have had some great responses to my writing. I have received emails from people who truly appreciate my writing and the story of my journey. This was always my goal- to HELP others and build community. However, after this weekend - after hosting my second annual Lyme Awareness event and starting a petition for OUR Right to Heal, I realized no one really cares... well, let me clarify that for you. I think Lyme patients care, but what about the people who know what we are and continue to go through healing from Lyme? Do they care? I do not think many do. My event and the petition are not for current Lyme sufferers only - they are for the future. I was trying to share a story-- yes it is indeed a very scary story, but it is also very real. I arranged for three top experts who treat Lyme disease (including pets) to share their wisdom and tips for prevention, diagnosis and treatment. My target audience was people who misunderstand and don't believe Chronic Lyme exists.  Unfortunately, these people avoided it like the plague. It is the plague - and i am the last person who will deny that as fact. I can't blame them for avoiding Lyme, but burying their heads and pretending that this won't at some point (possibly) affect them in life.. well, it is naive. Naive as it is for others to act like this, it is even more naive of me to think i will be able to influence and change them...

As i stood around Saturday afternoon, disappointed that some local "healthy" friends did not show to support me, I thought why am I really doing this? Am i doing this to beat people over the head to prove that my story is 100% true, and all I REALLY want is vindication from the accusations of being lazy, depressed, spoiled, nervous breakdown because I am not married yet?! Maybe I do want some vindication for all of the judgements thrown at me, but what was really driving me was a pure and loving determination to help others avoid what i had to go through to get diagnosed and treated, and what i still continue to fight in terms of insurance benefits.

What i realize today is no matter which way i slice this, I am not helping anyone but myself with all of this, and as i stood around Saturday, I realized I feel so much better relative to last year's event. I also recognize that I am leap years better then I was in 2010... and perhaps it is time to move on and focus my energy and talents on stuff that will help me make some money and allow me to rebuild my life. So, I decided that very afternoon, I am done with promoting Lyme awareness and advocacy publicly as Lyme Girl.  I am going with my gut on this, and my gut has been telling me remove yourself from the toxic fight - the toxic battle to prove Lyme disease exists and it is bad. I have to tell you the minute i made this decision, I felt a load off my shoulders. The best I have felt yet.

I wish all of you well and hope you recover and are able to move on from this as well. Please continue to fight for yourself and for others. I am still here for all of you and I love you all very much. This was and is a very hard decision for me. I will leave my blog up so others continue to know they are not alone when their family and friends abandon them or perhaps doubts them and makes them feel even worse then anyone can know except us.

I will leave my petition up and I hope to get 5000 signatures. link: http://bit.ly/IuJMrq  I will still work in the background politically on this, but it will be discreet and private support. I may write a book- but it will not be about Lyme - it will be about Life because what i found out through this is it doesn't matter whether you have lyme or go through a divorce... when life throws you a curve ball it sucks and you need to learn how to adapt and adapt quickly. i will focus my future writing about this... (oh i may do one more Lyme post on the myths of Lyme... I can't help myself after hearing so many crazy things people were saying on Saturday)

as for my vindication, I got it today by writing this post and turning the light off on Lyme Girl... I am off the hook and free from Lyme! I thank my friends for showing me this!

Love, LG xoxo

PS - please feel free to stay in touch with me. I welcome emails if you have questions for me or want an ear to listen. I am not giving up on all of you. lymegirls@gmail.com

What I have learned in 2011

My Christmas Tree. 

I know it has been an incredibly long time since I have posted on Lyme Girl. I have many reasons for it. The biggest reason is I want to move away from Lyme disease and move on with my life. What I have discovered is no matter how much I believe that Lyme will just be a short chapter in my life and there's more to this journey - my journey through life.  It- LYME is constantly in my face whether it be my dog suffering with Lyme & ehrlichiosis for five months this past year, a friend needing advice for a family member or loved one, my own symptoms varying and resurfacing and continuing to watch others needlessly misdiagnosed and not receiving proper treatment. With all this said, I have contemplated what are the positive things I have learned in 2011. I thought it would be nice to share my thoughts and lessons as I have gone through this.

* Live each day as fully as you are able. Don't lay around all day - go out for a walk - photograph a pretty scene - LIVE. Don't focus on the medicine, the tests, the diagnoses the minutia - it all doesn't matter. What matters is you are living and breathing - be thankful. which brings me to:

* Push yourself to go outside your comfort zone - try it start out with one thing once a month - then once a week and then once a day. You will be amazed at how much more you are able to do then what you expected - and it will give you a sense of pride and accomplishment.

* Be grateful and humble. For a while I expected and thought i was "owed" stuff and things - but life is not about what you think is owed to you or what you want and expect out of it. Life is about letting it be and being grateful for what you do have right now.

* Stop with the "what ifs" and the "should haves." For a few years I have been beating myself up with what if I did this and I should of done this ... and that, but what i realize now is it all doesn't matter. Everything happens for a reason, and you may not know about it at this moment but you will eventually. It goes back to the accepting and moving on being in the NOW not the back then or the future.

* Accept and forgive. This was and remains to be very difficult for me to grasp and carry out. I have learned that you may loathe someone or something so much - it eats you up inside - not figuratively but literally and physically. Yes there may be people who do not have your best intention at hand - but avoid them and move on. However, as I have gone through this learning process and journey, I have learned that most people have good intentions and mean well - it's is just you both may misunderstand one another. I have also learned that forgiveness is key - hard, I know and I still have to work on this as I have been hurt greatly throughout my life - but the more I release the pain and hurt, the better I feel.

* Meditate - I have suggested this many times to many people for various reasons... not just chronic Lyme et al. I suggest Cameron Day's Cosmic Flush - it has helped me greatly. When people ask me how have I exceeded expectations with my healing process - my gut reaction is meditation (and having a doctor who listens and cares).

* Do what you LOVE. This past year I set out to start to figure out what I will do next with my life. I am writing a new blog about my hometown - I am working on history stories and photographing places, things and people. I am also starting to sell my cookies and cupcakes. I am not doing this full time, but by starting out with these baby steps, I am inspired, motivated and committed to continuing on this path. I have had so many people support me through this and I am forever grateful to them for this.

* Always seek the truth and light. When faced with a difficult time or situation- look for the truth and light in it. Don't get caught up in your ego and your feelings - release them and rise above.

* Believe. This one is hard too- but actually quite easy. Believe in yourself and believe in others. Believe that there is a higher being guiding us on this journey- believe in guardian angels... I do and I didn't for quite some time - but very different now.

* Love. Don't forget to tell your family and friends that you love them and care for them. Most of all - love yourself - your brain, body and YOU. Don't focus on the negative, the sickness- focus on the positive. Look at yourself in the mirror and KNOW you are special and fabulous!

I wish each and every one of you a fabulous 2012!

Love and blessings  ~ LG

Putting Humpty Dumpty Back Together...

Humpty Dumpty, shown as a riddle with answer, in a 1902 Mother Goose story book by William Wallace Denslow

Well... I know it's been a very long time since I've written a post. There are a few explanations for why ... Some reasons having to do with my twitter being attacked for standing up for Lyme and ILADS and others are for personal matters that I've needed to address that have turned out to be quite consuming and draining of my energy.

So how's everybody doing? What's new? Fill me in on the latest? I'd love to hear from everyone!

My latest is I'm laying in bed now - in pain - head pressure is beyond - my eyes are blurry despite my typing this post and I'm dizzy. Funny part of this all is I was feeling a lot better for the past couple of months whilst focused on my personal matters. I still have several issues to address but somehow my body is telling me "STOP!!!!! You've overdone it now!" I go back and forth and debate myself and my body on this issue all the time... If I lay around all day and rest and relax - pretty much do nothing or bare minimum (impossible for me to do even now feeling worst I've felt in while) - would i feel better? Or does having goals and activities help one to heal faster? Or should one implement better balance into their lives and strike the right mix of relaxation and activity... My soul - gut- core says the latter is what's best but my silly little ego loves to push me to go go go go go and try to achieve huge feats in a day's time. I'm working on finding balance but find it very hard especially on days like today when I fall apart. Which brings me to...

I was talking to my lyme doctor and somehow we were talking about how hard it -- having Lyme and related tick infections is on patients. However, my doctor informed me that it's also frustrating for him because he said "just as he think he has Humpty Dumpty pieced back together again - Humpty Dumpty falls apart again because there was just that one little crack that he missed or didnt see but he fixed the hundreds of other little cracks... So Humpty Dumpty falls apart and he has to help put humpty dumpty back together all over again hoping it's a last time each time" does this sound familiar to you -- whether it be you -- the Lyme patient or your boyfriend, girlfriend, wife, husband, friend daughter, son !?! Do you watch and get better only to fall down again!? I have to say when my doctor brought up Humpty Dumpty I was like huh & hey... I did not like being compared to an egg on a wall (and also the fact the all the kings horses and all the kings men couldn't put Humpty Dumpty back together again!) ... But as I reflected on his analogy ... I thought it's a pretty good analogy for what we - our doctors and we go through.

I'll only add that I feel that that after each time I fall again...  I do feel slightly better on the next go around, but it is so very painful to fall. Why?? You know why ... You have hope when you're sitting back up on the wall... You hope like your doctor that this is it... that you are all better and no more antibiotics or tests or symptoms. That you can have your life back 100%.

I write this so you know you're not alone and also to encourage you to stay positive because one day you will be sitting back up on that wall with no cracks.

Love lg xoxo

The Biggest Challenge of My Life

My Violets April 2011 - LG2011

It has been a while since I have written a post. I decided to not have an April Lyme Hottie this month because many of our Lyme friends have been hit by some tough incidents in their lives. So this month, I ask that you focus on sharing and giving love- outreach to others that maybe you haven't heard from in a while.  Please check on all of our friends and ensure everybody is ok. I find that many of us think others are ok because we have not voiced dismay or pain- but in fact some of us are suffering. Please consider that maybe some need an ear or friend to talk to -  don't assume someone is ok if you don't hear from them. We are a family and a community - sometimes i think we forget this and turn on one another because you haven't heard from someone in a while. Bull CRAP - we all have our way of dealing! I want to remind everyone that I come from a place of love and my goal is to help others by letting them know they are not alone. I thought i was alone for so long in 2008 and 2009- I'd retreat to my bed and not want to talk to anyone -so i know what it is like. And i know there are some out there like this- please let's join forces to help our brothers and sisters get through chronic illness and find the light through this.... Lastly - Send special love and hugs to @andreabakes @Alisyngayle and @lymechick

As for me, i have been facing my own nightmares - I had a medical scare last month - and still have to deal with it. I continue to meditate and look to higher self to get through all of this. i have been finalizing three legal matters - one is out of my hands for now and in my attorney's for now... i am finalizing depositions - yes multiple - and records and reviewing. I really didn't think all of this- these legal matters would consume me this much- not just physically but mentally. I am drained rehashing my medical history- over and over and over to make sure correct- factual - i have all the records to support the history/testimony. All of this led me to write my local senator about my story- my medical story - and i asked my local senator to represent US - be an advocate for Lyme - all of us Lyme patients who are constantly being denied medical treatment (by insurers) and disability coverage - but what i found to be most frightening is when i typed up my history - i scratched my head and thought how could so many doctors tell me NOTHING is WRONG with you/ It's crazy. I actually talked to a couple of those doctors as I needed medical records from them - and i told them my story- my diagnosis - how i have improved (slightly) with antibiotic treatment. They were shocked- some dismissed and were very defensive (well all were defensive - hello malpractice) but a couple thanked me and admitted they had put me in a box - a box called anxious and depressed - stressed and anorexic. An easy box to check off... instead of considering to look further.

So i am dedicated to raising awareness about this often misdiagnosed and misunderstood disease. In May i plan to host a local Lyme Awareness event at a Farmer's Market. My doctor agreed to host with me and answer questions and inform about Lyme and tick related diseases. If you want more details friend/fan me on facebook. We may have to change the date - but stay tuned for final info and invite.

So that's a "quick" update on me - but my point of this post is actually to write about something that struck me hard the last week. I actually went in to NYC and stayed in for a few days - something i have not done in a very long time. Why haven't i stayed in NYC? because i could not bear NYC sounds and smells - the traffic- the crowds all made me crazy - and i'd panic- literally have panic attacks. But last week i had no choice - i had to go for medical tests and meet with my attorney's/ So i decided to stay over instead of back & forth.

I was pleasantly surprised to find that i was not as anxious - i was able to have lunch and dinner with friends- i walked around a little. I was tired- in fact exhausted but it was better this time - compared to last time. So i was excited. I thought to myself I am finally achieving better health. After a couple of days in the city, i went for all day medical testing. I sit with the doctor and after about two hours into the testing I looked at him with tears in my eyes - i was exhausted. Mentally & emotionally. he  noted my frustration and said he felt i needed more antibiotics... I looked at him like- how could this be- i have been on antibiotics for 1.5 years!! I defended myself by saying i just had lunches and dinners with friends all weekend long- that i had felt the best I have felt physically in long time- admittedly not 100% but i was semi-funcioning again. He shook his head at me - i looked at him in shock- he said the brain follows the body and i wasn't THERE yet... i couldn't help but wonder will I EVER be THERE - be BETTER?!! I was shattered by this. Then it hit me - this is the longest marathon i have ever had and hopefully will ever have to run. This race has been grueling - i know my Lyme friends know this already, but for my friends who haven't faced this. Here is the deal:

First, I have had to make my mind up to join and then win this race - I did that a long time ago by never giving up to find a diagnosis and get to the bottom of my symptoms. Some of you supported me - some of you thought i was just as crazy as my doctors did - it's ok- i remember in high school laughing at a girl who had Lyme- I remember thinking she was a HUGE drama queen- i eat those words now. You can't judge others - you don't know and i have learned this lesson over and over and over as i grow spiritually through this chapter of my life. Nevertheless, I found out what was wrong with me and then i made up mind I will kick it - then i went out and found my support group- my team - my team is made up others who are running this same race with me - we check- in- we give each other pep talks - and then i have my family and friends who are on the sidelines - they will never really know what it is like to run this race but i know they are cheering me on and want to see my cross over the finish line with a gold medal of good health... so in between deciding i am going to win this race and completing this race - i run little relay races- where i go on/off antibiotics and each little race i get stronger and prepare to finally complete this marathon... make sense?? It didn't make sense to me until last week- you see i still lived in this bubble - i had that this idea that fighting these diseases - the Lyme- the parasites the ehrlichiosis were going to be a piece of cake to "cure" - i thought a month or two of antibiotics and i would be in the home stretch- why did i think this - because i was never really sick before this - the worst thing that ever happened to me was walking pneumonia after traveling internationally then skiing out west then going to beach- when got home i collapsed - after 24 hours on antibiotics i was back up & running... (well i was but my doc insisted on resting few days & i did) I was strong- i was healthy and now look at me -look at me - i struggle to do multiple activities in a day- i now carefully plan my days to ensure i will have enough energy... OK i had to take a nap at my doctors office last week because i was too tired to do a full day of tests!! So yes i still ponder and contemplate - HOW COULD THIS HAPPEN TO ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! But now i look at it like my longest and best marathon i will ever run- and i will do this and i will cross that finish line... are you all with me - either running it with me or on the sidelines cheering all of us on?!! I hope so!

XOXOX