I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Friday
Aug172018

Tired, Just Tired of Lyme

I'm tired.

I'm tired of the world not understanding chronic Lyme, of doctors disrespecting the other doctors who treat it, of doctors saying it doesn't exist. 

I'm tired of family and friends questioning the amount of money we've "thrown" at treatments that haven't worked or maybe worked only for a short amount of time.

I'm tired of family giving up on us. I'm tired of watching every word I say. I'm tired of not having much to think about besides chronic illness some days. I'm tired of trying to convince someone else that chronic Lyme exists. I'm tired of arguing about disease and transmission.

I'm tired of there being no damn cure. Of there being no good testing. Of doctors with conflicts of interest or simple ignorance arguing against the evidence of the persistence of Lyme. I'm tired.

I'm tired of relapsing, of not always being filled up with energy. I'm tired of not being 28 anymore, with my 28-year old's high energy.

I'm tired of the financial struggle; hell, we could've had a zillion vacations or purchased a summer home in Tahiti instead of dealing with this.

I'm tired of the emotional struggle, of seeing kids fight before they're even fully grown, while their peers race through the normal hurdles of life. 

I'm tired of people you thought were supportive suddenly questioning everything you believe.

I'm tired of pretending for moments at a time that all is calm and OK when it won't be in five minutes.

I'm tired of putting on that face, you know the one that you wear when you're at the grocery store and someone asks how you're doing..."Oh, fine, how are you?" I'm tired of wearing that face even for family members. And I'm tired of not spilling all to family and close friends so that they have a true picture of what is going on, but if I were to spill it all, there would be judgments. 

I'm so tired of being judged. And we are judged. Everyone who is chronically ill is judged. It's yet another prejudice that underlies our culture. We become the "them." 

I'm tired of having a happy day only to return to grief. I'm tired of coming home. I'm tired of struggling for years.

I'm tired of asshat doctors saying that PANS doesn't exist or it can't happen to kids who have autism or it must have a sudden onset or must only be caused by strep. Even if these issues don't pertain to my kids, I'm tired of them because they affect people I hold dear to me, other parents who are TIRED of this.

I'm tired of being a pioneer. I'm tired of feeling alone and forgotten.

I'm tired of giving up my dreams. I'm tired of looking older and losing precious time with my babies. I'm tired of missing out on normal childhood fun. 

I'm tired of explaining myself. I'm tired of forgetting vocabulary and I'm tired of feeling cornered when attacked and unable to come up with the correct language and ideas.

I'm tired of not being there for friends as much as I would like to be. I'm tired.

I'm tired of fearing that there is worse. I'm tired of fighting for treatments, trying to figure out the right doctors. I'm tired of the huge expenses and the fees that some doctors demand. I'm tired of not going to all the right doctors anymore because we're not billionaires.

I'm tired of being sad, of questioning the meaning of life, the significance of our existence and beliefs. I'm tired of praying and wishing for dreams that don't come true.

I'm tired. I'm grateful.

I'm grateful for the warriors who continue to find the words and fight. 

I'm grateful for the people who add to the list of studies done to chronicle chronic Lyme.

I'm grateful for the actors and athletes and politicians who took a bite out of a lime to increase Lyme Disease awareness in the #LymeDiseaseChallenge. I'm grateful for Yolanda Foster for kicking it into gear after 5 of us moms across the country launched it after months of intense work and planning. I'm grateful that it continues, several years later although I'm no longer as active with it...because I'm tired.

I'm grateful for the scientists who continue to study the persistence of Lyme so that they can create a cure.

I'm grateful for the doctors who put their work on the line so they can treat it, for the doctors who look beyond an erroneous blood test to diagnose Lyme, to the doctors who struggle to see the big picture.

I'm grateful for friends who feel the same way and tell me so.

I"m grateful for all the writers and advocates in our community who just don't quit. I'm grateful for people who feel it's their life's work to make change. 

I'm grateful for small moments of tranquility and large moments filled with laughter. 

I'm grateful for wine and chocolate and bicycling and yoga. I'm grateful for happy dogs, beautiful sunsets, music and books that let me escape.

I'm grateful for the reaching hands and words and love from people I've met often or haven't even met in person.

I'm grateful for doctors who say that everything will eventually be OK.

I'm grateful for my own personal need to make change so that others don't endure as we have done.

But I'm tired too, and at times, I just need to stop. And I am tired of feeling tired.

 

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