Friday, August 14, 2009

A Rambling Revelation

I guess all along ( since my diagnosis in March 2009) i have had some inkling or understanding that i may have had this disease ( Lyme Disease and / or co-infections ) for a very long time - much longer than my recent tick experience would suggest. I had even discussed this with my LLMD in my first visit . We discussed it again recently.
We were going over some of my current issues and went back over my early health history .
I had one of those blazing 'lightbulb' moments of " HOLY CRAP ! " i have HAD this for more than 30 !!!! years . Yes , i was re-infected recently - that i know for certain but some , if not all of this was on board for a very long time. ( i think the Babesia is the only real 'new' one. )
In my recent LLMD appointment we went over my Bartonella flare since this seems to be the main culprit right now and i realized ( as i was adding up my current symptoms ) that many of the SAME symptoms have appeared and re-appeared over the years since i was 13 years old . I had a stray kitty that we had adopted and she was vicious in the beginning , scratching me repeatedly etc . until i tamed her and she became my best friend. It is very likely she infected me first.
I had strange rashes.
I developed strange , red, angry " stretchmarks" on my hips and upper thighs. (I was 95 lbs at the time.)
I had terrible migraines ( my grandfather passed away so maybe it was stress )
They were bad enough for my doctor to suspect a brain tumor, though.
I had several Cat-scans, MRI , etc . Nothing.
Stress.
They went away only to come back , intermittently over the years.
I got conjunctivitis alot , recurrent bladder infections , strange rashes, emotional outbursts . I was a teenager . Normal , right ?
All the doctors made me think so .
I had Mono ( Epstein -Barr virus ) so bad i was hospitalized overnight.
I always got tired easily after that. They administered steroids.
I would get "sun poisoning" on my chest when i went out in the sun .
I cried alot , threw 'fits' . Had strange nightmares. Migraines and neck pain persisted.
My periods were so heavy i had to stay home from school.
I never felt 'normal'.

I am SO ANGRY. No one ever thought to test me for Lyme disease , i was outdoors all of the time , hiking , camping , playing forts in the woods growing up , frolicking through fields and beach grass without a care in the world.. I was bit by spiders, ticks, mosquitos , fleas - you name it . Constantly . I was sick a lot.
Then I got cervical cancer in my early twenties, - had a good patch for about five years when i got ' health concious ' and became a vegetarian and organic only consumer. I took probiotics , practiced yoga , took vitamin c . I built a stronger immune system.
Then i went through a very stressful period with work and love and i started getting sick again.
I had fibrocystic breast tumors , ovarian cysts, uterine fibroids. Depression , ADHD, exhaustion. Neck issues and migraines continued.
Years passed- i guess i am aging early...
A pregnancy plagued by pain and illness. My son almost died . I almost died . A year later - hysterectomy.
Now i worry about his health - which is like a ticking time-bomb waiting to explode. He is healthy now but what if ? This thought haunts me. I don't want to miss anything, like i was missed. I also don't want to be one of those scary , over -protective germ-phobic mothers , either . So i wait and i watch , like a CIA operative.

No one EVER questioned ANY of my health issues .
I suffered off and on for years with no explanation.
Just tests picked out of a hat , pills and being brushed off when i couldn't be helped or 'solved'.
WHY didn't anyone know or suspect ???
BECAUSE NO ONE KNOWS .
I am making it my mission to help educate people on the truth behind the 'spin'.
I will no longer stand silent and help perpetuate a lie.

The fact that i have possibly been suffering in silence for YEARS is even worse .
I am just so angry , and i am trying to come to grips with this idea.
i know many , too many of you can relate.
I am not 'special' , i am one of thousands who are only now ( if they are lucky (unlucky ? ) finding out why their life has been filled with unexplained health problems.
Multiple exposures are not only possible but highly likely . A strong person's immune system can fight back a lot of infection . Many of us ( most of us actually ) have viruses and bacteria that we live with and never cause us much of a problem. Until your immune system is compromised by stress, poor health , surgery or another illness - you may never even know it. We are only tested and treated when something goes wrong . This , in my opinion is definitely part of the problem with medicine in the US - we do very little in terms of preventative care which would make everyone a lot healthier and happier . Except Pharmaceutical companies , of course .
And they have their hands in everyone's pie. but THAT is another discussion , altogether. ; )

So , i got a tiny little tick bite last summer ...
And that may have just been THE STRAW THAT BROKE THE CAMEL"S BACK .
My world has changed forever.
It is that realization that has me floored, still.
I just cannot get over it.
It is a lot to process when one is already ill .

I do not want my child or anyone else to go through what we are going through .
It is just too much to ask .
I am still in shock that i didn't know ANY of this just a few short months ago .
Hard to believe .
And i like to think of myself as an informed human being .
I was lied to . We all were .
In the 'information ' age , to boot.
Thank you for hearing me . I just needed to tell someone - everyone - how i am feeling . I am strong - i am a survivor . But i still hurt .
And tonight , i am really hurting as i mourn the loss of that thirteen year old girl who loved nature and animals and the world and it didn't love her back the way she thought it would.

3 comments:

  1. I am so sorry for your LOSS. I feel like I understand and it is a loss.
    I don't know if this helps you or not but no one ever questioned things for anyone because Lyme wasn't even named until the 80s and they still know so little. But through people like you and me they are learning. Things will be better for the next generation. Hang in there, kiddo.

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  2. In defense of THEM (the doctors and the system) these diagnoses are difficult and Lyme Disease simply wasn't as much on the cultural/medical radar as it used to be... at least you're in the midst of some self-discovery, as baleful as it might be.

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  3. I'm sorry for all the pain you have been going through. There is no way you can get those years back, just make the most out of the years you have. I think you should have your voice heard by over 6 million monthly visitors who come to Wellsphere's website to seek information on a variety of health related topics. We would like to raise awareness for Lyme Disease, and connect you and other people who are in similar situations. Through Wellsphere's HealthBlogger Network, you can engage with others to lend a helping hand for one another.

    For more information about joining, please visit http://www.wellsphere.com/health-blogger or email me at hua [at] wellsphere [dot] com.

    Hope to hear from you soon!
    Hua
    Director of Blogger Networks
    twitter.com/wellsphere

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