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» LymeNet Flash » Questions and Discussion » Medical Questions » the good points about having lyme

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Author Topic: the good points about having lyme
roro
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trying to be positive here. lets list some good points:

1. I met all of these wonderful people on lymenet

2. I have more myspace friends now

3. due to poor memory I can watch the same movies every couple months and its like watching a movie I've never seen.

4. I no longer have to search doctor after doctor for a diagnosis.

anyone else have any?

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tdtid
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Roro,

When I first saw this topic header, I started wondering what mind drugs they must have YOU on. Hahahahahaha.

But I do need to say that I agree 100 percent with your number 1. I have met some of the most intelligent and compassionate people through these boards, local support groups and at lyme events that I know I would have never met without lyme.

So from that angle, yes, a DEFINITE positive.

Also, yes, it is a true blessing to not have to go from specialist after specialist, telling him all your symptoms, having tests run and being told, "let's try this medication" that often I'd have a reaction to and end up in the hospital, yet again.

I do think that as a whole, lyme doctors are really the best. REAL doctors wanting to help us, rather than run us through an assembly line and pass out drugs in hopes something will make a difference.

But due to my brain fog and lack of thinking skills right now, I have nothing new to add to your list, but will bring this topic up for others to add. [Smile]

Cathy

--------------------
"To Dream The Impossible Dream" Man of La Mancha

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Leigh9O
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Hi Roro,

I also thought "nutso here.. needs new meds" when I saw the topic.. lol

but, you are absolutely right..

#1 is definitely meeting all the new people on here and I feel very supported now, where I didn't before.

some more that I can add too (even tho I'm herxing like crazy and keep thinking "I can't even doooooooo this!!)

*getting educated.. I had no idea about the complexities of this disease, or any C0-infections. I am now armed with some things to discuss at my next LLMD appt.

*Help getting through the SSDI process. OMG I have been having to wait and wait. I didn't know what to get my docs to "fill out" or what exactly to share and not share about my illness to get approved. BIG HELP!

*I now have more support from family, friends and others that I have a dx of Lyme. They all knew somethign was wrong w/me, but often friends, co-workers etc asked the question "why are you sooo sick all the time??"


I also had an email sent to me by mistake where my manager and others were talking about me being sick all the time, but they wondered if I was just trying to get out of work [Frown] How frustrating and depressing

I can't work anymore, but I do try to keep my chin up , count my blessings, and look at what I "can" do and that I'm moving forward now with a dx. Thats a positive for me.. just knowing what the heck it wrong w/me.

Thanks for your post and shining a light on the importance of trying to stay positive through this nightmare.

Take care and God Bless,

Leigh

--------------------
God Bless,
Leigh

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roro
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I thought of more:

I know a LOT more about medicine because of all the things over the years they had to do tests to rule out.

I swear they tested me for hundreds of things, and every time I looked it up on the internest to see what the symptoms were. also I looked up stuff because I thought I had it and looked up the symptoms for

as a result, I now can help others because when they have symptoms I can usually guess what they have. I always guess the right answer at all the House shows, Mystery Diagnosis, Diagnosis Unknown, Dr G Medial examiner, etc.

Another one:
I have grown a lot emotionally, and have become a better person. I am stronger, more empathetic towards others, and my priorities in life have changed for the better.

I have learned to value each day and live life to the fullest. I have gained gratitude, and realize the value of good health.

c'mon folks, help me think of more.

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Dawnee
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It has helped my faith in God and my relationship with Him.

I have been able to warn friends/family/even strangers that their symptoms or diagnosis could be wrong.

I have been able to educate my chiropractor and my primary care doctor.

I have a better understanding of how precious my time on earth is.. and my priorities changed!

I know I don't have a tumor in my head or in my upper body due to 3 MRIs when regular doctors were trying to figure out what was wrong with me...so at least I know things inside are okay for the most part! (that helps.. since I am a bit of a health worrier)

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Tracy9
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Gaining the insight and appreciation for what is important in life. Nothing else matters if you dont' have your health.

I no longer care what car I drive, heck I dont' even drive for that matter, what clothes I wear, or about any material things.

All I want is to be healthy. I have an entirely different outlook on what makes me happy. Just today a shelter came to my house and picked up a truck load of "stuff" I donated. I have come to realize downsizing is very important. It will make my life more manageable, and I dont' need so much "stuff."

I also have a HUGE appreciation for a "good day." What, in the past, would have been "just another day", is now the best gift one could possibly get. Those good days, though few and far between, are cherished more than diamonds or jewels!

I know now that all that matters is my family, that we are healthy, have food and a roof over our heads. Everything else is just the icing on the cake.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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lymebytes
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I am most thankful for having lyme because it helped to diagnose 6 other people in my family, especially my son, I would have NEVER known what in the world was going on with him, hadn't I had been diagnosed.

I have met the greatest people on earth - lyme patients. I mean that - this is a unique strong group who have fought doctors, pain and politics and been called crazy and we go on.

I am grateful I have been able to educate 3 doctors (who were open to it) who now are "aware" and looking for Lyme in patients.

--------------------
www.truthaboutlymedisease.com

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METALLlC BLUE
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Personally? If I had to give up all the good things that came into my life, and never had gotten sick, I'd have gladly chosen that path.

I am not grateful in any respect for what I've lost as a result of this illness. I'm 30 years old, I was bitten at age 9.

That just isn't a life to me. I'm working on this problem though.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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Cold Feet
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Great topic, thanks for this positive and creative idea. Here are my newfound gifts after years of struggles: humility and hope.

--------------------
My biofilm film: www.whyamistillsick.com
2004 Mycoplasma Pneumonia
2006 Positive after 2 years of hell
2006-08 Marshall Protocol. Killed many bug species
2009 - Beating candida, doing better
Lahey Clinic in Mass: what a racquet!

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Clarissa
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Empathy

Learning that each day is a gift

Learning that life has no guarantees

Weight loss (sorry but it's great to be thin!)

Helping others and will continue to do so through awareness and reaching out

Friends on Lymenet

Learning to be resourceful, strong and ok being alone a lot of the time

Loving simple things like my bubble baths

Validating how important my pets, family and friends are to me

Bringing out the fighter in me

Realizing that NO ONE gets a free ride

Hoping this happened to me for a really good reason that will be evident in hindsight

--------------------
Clarissa

Because I knew you:
I have been changed for good.

 -

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lymebytes
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Metallic Blue - I totally and completely understand your point because there is no price on health. I am not grateful for what I have lost, but I am grateful for what I have gained that no one can take away. I am betting you have helped and influenced/educated a lot of people because you have had this disease, you have changed someones life, maybe many for the better as a result of this blip in time, that I am sure of. I don't believe anyone of us has suffered in vain. Know that you have made a difference in this world and that counts more than anything.

Yes, I'd give up anything to have my health back..including my right arm, I was naive to believe nothing like this could ever happen to me.

But if you watch the news or look around this world, so many are suffering from starvation, sickness, disease, the planet is a mess and none of us get out alive. More reason why we have to make the most of everyday..otherwise we are "allowing" this disease to steal our life one day at a time. I know as well as anyone how hard that is...but I try, I practice and I convince myself and believe this too shall pass.

We can meditate about how screwed up things are or think how great things will be when we are well. Don't doubt it for a second. I try to also always be thankful for what I have left.

As hard as it is to get up each morning knowing I will suffer yet another day isn't easy - but I tell myself, I have made it this far and I will live another day thankfully and I always hope I will encourage someone or help someone learn about this, as I wait for wellness.

I know when it is over I wouldn't have changed it for anything. Because it has changed me into a much different person, I don't even like the person I was pre-lyme. I don't even want that life back...I want my health back with the new me attached.

I would rather have had this disease and helped one person in this world. Rather than, just floating through life like a Paris Hilton or some other ditz who is rich and shallow and will likely never make a difference being too focused on themselves...helping people is what life should be about...losing sight of ourselves and helping others,now while sick and always.

I can add that to my list -

knowing the true value of being healthy
knowing each moment of everyday counts
helping one person changes everything, because that person will help someone else and it will trickle down - it builds legacy's - we are really the pioneers for generations to come.

You know the saying - that which doesn't kill you only makes you stronger.

I am now stepping down from my soapbox.

[ 29. June 2008, 11:53 PM: Message edited by: lymebytes ]

--------------------
www.truthaboutlymedisease.com

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Tracy9
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Now, that was a damned fine soapbox.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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bettyg
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quote:
Originally posted by Clarissa:

Weight loss (sorry but it's great to be thin!)]

but clarissa, on WINDY DAYS I DON'T BLOW AWAY!! 1 advantage of the extra lbs. i'm carrying!!!


metallic blue, you have helped so many people with your llmd lists of pros/cons for those you have. you give patients OPTIONS of who they want to chose to get their life back in remission!!


i think you've mentioned them all off the top of my head.


LIVE EACH DAY TO ITS FULLEST!! tomorrow may never come! [Wink]

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Hoosiers51
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I wouldn't have ever taken the time to learn how to cook, because I was so busy before Lyme!!!!

I also discovered, in my spare time, cooking is one of my true passions and may pursue it as a career once I get better.

I wouldn't have met my husband, because I would have been in college at the time we were dating, but was too sick to go.

I became so much more mature than any of my peers! I see the things other mid-20's people worry about and they seem so trivial. I even look at things older people worry about and they seem trivial!

I feel like I have a greater appreciation for life, and a greater appreciation for family. Instead of worrying about a career (because I don't have one!), I think about the people in my life. Granted, I had to make some medical progress before I could get to that point when I wasn't just fighting to keep my head above water.....but once I got a little better.....that's when I could take the time to help out the family!

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roro
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quote:
Originally posted by METALLlC BLUE:
Personally? If I had to give up all the good things that came into my life, and never had gotten sick, I'd have gladly chosen that path.

I am not grateful in any respect for what I've lost as a result of this illness. I'm 30 years old, I was bitten at age 9.

That just isn't a life to me. I'm working on this problem though.

I can see your point. Your life was affected so young, that you never really got a chance to develop into a healthy adult, so you don't know what you would have been like if you hadn't been ill. So how can you tell which things were because of the illness?

But every tragedy, no matter how horrible, always has things that came out of it that are positive. I guess what I am trying to say is every cloud has a silver lining.

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Clarissa
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roro:

I think this was a lovely question to pose on a post. It shows what a positive person you are and helps us all take a look deep into our souls to find that silver lining in this disatrous affair.

Metallic Blue: I was born with this wretched rancid disease so I know no other me than the Lyme me.

All I know is that, for some odd reason, everyone seems to think I'm 'special'. I think that reason is because Lyme made my brain and senses so overly sensitive that I can, literally, feel other people's pain and I feel and love so very deeply.

It is a blessing and a curse but I'm wondering if sometimes that our journey's are not always about our own personal happiness.

Maybe this time around, it's about giving and you give a lot to this board. I trust and respect your opinions and research very much. You'd be one of the first people I'd PM if I had a complicated or very personal question.

I do believe in reincarnation and I do believe we're all learning lessons from this disease to help us in our next life. My Lord, it does take its toll on the heart, soul and body but I pray we will be rewarded in some way, if not in this life, in another. [group hug]

--------------------
Clarissa

Because I knew you:
I have been changed for good.

 -

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bettyg
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clarissa,

i love your post and the way you ended it ...YES, YOU ARE SPECIAL; i'm sure you have been told that all your life by either your mom or dad or BOTH on many occasions.


i was told this all the time by my mom; later as dad was nearing death, and i told him he was dying; he opened up and said I LOVE YOU; which in his late 80s was unheard of as he grew up! [Wink]

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Michelle M
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quote:
Originally posted by lymebytes:
I am most thankful for having lyme because it helped to diagnose 6 other people in my family, especially my son, I would have NEVER known what in the world was going on with him, hadn't I had been diagnosed.


Same here.

I'm actually glad that I got lyme myself first.

Otherwise, when my daughter began having knee problems, I probably would have taken her to the local duck. He never would have thought of lyme. She'd have had steroid injections. Worse problems. Then maybe surgeries. Later, for the Bell's Palsy, maybe more steroids. I know how they treat these things.

So I'm really glad I got lyme. Thank you, God.

Michelle

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jjeennnniiee
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Thanks for starting this thread Roro!

Lots of very inspiring posts here!

Thanks to those of you who have contributed!

I'm adding the ones I couldn't think of, but can relate with, to my list now.

I need to be reminded of this often, as my mind tends to wander toward the bad, instead of the good.

After the day of herxing I've had today, I'm glad I came across this!

This reminds me of a saying...

Life isn't measured by the number of breaths we take, but by the number of times our breath is taken away.

I think my lyme brain got that right. [lol]

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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groovy2
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Aaaa- I have a lot of small plastic jars with tops
to put nuts and bolts in -Jay-

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ssmillik
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For me, the most important positive to come out of Lyme was learning to self-advocate. I no longer take a doctor's word as the final word of God (unless it's pretty clear-cut).

I take their word as a guideline, and then I do my own research.

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METALLlC BLUE
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I have this long post I wanted to put up, but I don't have the courage to say how I really feel inside to that degree. It's a lot of anger, swearing, and an extreme amount of self-pity.

Instead.......

I can say though, truthfully, that I appreciate what you all are trying to do for me in saying what you have. You've all been so sweet in your attempt to reach me by sharing some hope with me, so maybe you'll be able to go one step further after I say these next few things.

I don't need help fixing my feelings, or changing my attitude. I don't want to be happy or grateful at the moment. I need help feeling my feelings as they are, not as I or anyone else wants them to be.

That's part of why I'm so ungrateful and so exhausted. I've held my true feelings in, in order to "help others, and to be positive." - I feel guilt for going against the grain here, but I need to say these selfish things. I would give anything to go back in time, and to have never walked through those woods as a child. I'd give up all the people I've helped, all the kind things others have done, and all the people I've met, to have what I presently don't. I can't tell you that my life would be better or worse if I could go back, but it's how I feel, even if it's not rational.

There comes a time when even iron can be bent and broken, you know? I can't hold it in anymore.

I want to put me first and to be able to permit myself to spew my anger and pain, because it's where I really am. It's what I'm really experiencing. Tell me it's ok, and that if I do this, it will help me move past these feelings to some of the positive things you're asking me to take inside and own.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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jjeennnniiee
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Hi Metallic Blue,

I understand what you're saying.

I really do.

Who would really want to be sick with lyme and lose the good life they once had?

No one in their right mind.

You're grieving and everyone grieves on their own time.

While others can try to help, it's up to you to decide the best way for you to work through it.

There's no right or wrong time, but eventually, like you said, you can't hold it in anymore.

If you feel it's time, then it's time.

Only you hold the answers and once you find them, can act upon them, accordingly.

I think you actually revealed some in your post, especially the last part of it.

Anyone can tell you it's okay, but you're the one who has to tell yourself that and when you do, really believe it!!!

I struggle too, where I have days I'm grateful and can see postive things and others where I'm not and only see the opposite.

I don't know if anything I've said will help you or not, but I hope you find some consolation, just by knowing you're not alone.

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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Larkspur
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Interesting thread

I have a very similiar story to Clarissa - exposed to TBI as a little girl and not diagnosed until early 30's when I presented with full blown neurolyme(5 years ago)

Once I got diagnosed I worked my butt off being postive and doing everything I could to get well, and pretty much was in remission.

But I wound up relapsing. I'm still not back on my feet.

I'm really really angry and bitter about relapsing. About being sick all my life. That is where I am right now.

Maybe I need to experience that and be ok with my anger as part of the healing process, who knows.

I believe there are no negative or positve thoughts or feelings - I think we need to feel what we feel at that moment

BTW - I believe in reincarnation too - I'm and really really hoping this is my last incarnation!!!!

--------------------
"We must be willing to get rid of
the life we've planned, so as to have the life that is waiting for us" - e.m. forster

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Clarissa
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Metallic Blue:

I TOTALLY get it and I feel like you a lot of the time.

Screw it, this DOES suck but if I don't "let go and let God" then I may as well just shoot myself. My brain HAS to find some "good" in this because I can't go on if I don't.

Today my dermatologist (so beautiful) said she's engaged to the plastic surgeon (so handsome). I felt a physical pain in my body...an envy of a life I may never have being a 40-year-old woman with TBD's in my body.

I pictured their beautiful home and the gorgeous healthy children that they'll have and how they look at each other when they pass in the hallway and I thought, my life SUCKS.

I think it's totally healthy to vent, be angry and to let it out BUT don't let "it" drive you, don't let IT be your future and try try try not to brood. SO much easier said than done, I know.

We're all doing the best we can, and no, we're not quadriplegics, burn victims or Helen Keller but we're WORN DOWN mentally and physically...just damn worn down.

Let it out, all of it and then slowly re-fuel, re-build one minute, one hour, one day at a time. Would you really want to put the book down now? Don't you want to know how it ends?

I do.

xoxo MB
I respect your honesty.
[kiss]

--------------------
Clarissa

Because I knew you:
I have been changed for good.

 -

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Greatcod
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There are some positives to all this, but I would give them up in a second if I could have my health back.
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Larkspur
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Well, today I was reading the July Issue of Oprah mag and there is an article by Martha Beck talking about dealing with regret/anger over the past and steps to move forward.

Obviously, I found it quite interesting.

Well, anyway, to illustrate the steps she recommends the example she used was a person who has Lyme disease!

It was interesting she chose to use that situation as her example!

It made me think about some of the issues we had been discussing on this thread.

It's on page 2 section 2 of the article

http://www.oprah.com/spiritself/omag/ss_omag_200807_mbeck.jhtml

She does insert a little humor about Lyme, which is ok with me personally, but I suppose it might bother some...

Just thought I'd share

--------------------
"We must be willing to get rid of
the life we've planned, so as to have the life that is waiting for us" - e.m. forster

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jjeennnniiee
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If you're struggling with living with lyme disease, I suggest you read The Lyme Disease Survival Guide by Connie Strasheim.

I'm almost finished reading it and have found the "physical, lifestyle, and emotional strategies for healing", per the author, to be quite insightful and helpful.

It's also written "with a dash of humor to light the way", per the author, which really makes you smile and laugh, at times.

I do believe in the old addage laughter is the best medicine and it's the first lyme book I've ever read, which has actually been enjoyable for me to read.

Kind of ironic to read about lyme and have that happen, eh? [Smile]

Love, Light, & Health,
Jennie

--------------------
My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm.

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Lauralyme
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The good points...
Since taking ABX my complexion has never looked so good! Never a blemish. Being slimmer is kind of fun too.

Kidding aside I would say I am profoundly aware of inner strength I didn't know I had. I feel a stronger bond with two of my friends as they have been so very supportive which I am eternally grateful for.

The contact I have had with other lymies has made me see a side of humanity that I hadn't seen before.I can't change the past so I have to focus on the postives.

--------------------
Fall down seven times, get up eight
~Japanese proverb

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4Seasons
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I am so grateful to have a diagnosis and the hope of getting somewhat better.

I apparently contracted Lyme when I was 23 and I just turned 50 this year, the same month I was diagnosed.

I spent 27 years looking for pain relief, wishing my life was different, trying to make it as normal as possible. Especially when I was younger, I had so many regrets about not being able to live the life I wanted to live. Mostly, though, it was so lonely.

It taught me tremendous patience and inner strength, but it also brought me to my knees many times. It taught me only to work with health professionals who treated me like a partner.

It taught me to put myself first and not always take care of others.

It taught me that I am a survivor. Just in the last couple of years I reconciled myself to never knowing why this happened to me and the best I could hope for was pain management. For a long time I have been working on seeing the the good things in life - my husband & daughter, friends, many great blessings. sometimes when in great pain I just kept looking into my daughter's beautiful blue/gray eyes or studying the complexity of a leaf to help me hold on.

I like the person I am at age 50. I don't remember life without pain. Finding out the cause when I had finally given up all hope is a miracle to me.

The reason I found out is because my 13 year old daughter has been critically ill for 8 months with congenital lyme. It is taking every resource I have 24/7 to help her through the hell she is in. Hopefully, she and I will be able some day to see some good points about her having lyme - but today is not that day.

Marla

--------------------
"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."
Anonymous

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Robin123
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Having lyme has slowed me down and made me more attentive.

I don't rush around because I physically can't. I stay in one place on the escalator instead of running up or down it like others do. I don't run for the arriving bus or train. I don't see the need to honk at other drivers who are driving too slowly.

I'm just happy to be out at all, and I am present to what is in front of me. My former self wouldn't know what I was talking about here!

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