The KLS Episode

My mom wrote the poem: “The KLS Episode” when KLS was at it’s worst for me. I hope this helps!

The KLS Episode

 

Today my daughter lost her soul

There is no emotion

There is no understanding

There is only sham rage

A rage she does not control but

That controls her

It is directed at me only because

I care for her

If she were alone, it would be directed

At thin air

I love her with my entire being

 

Today my daughter sleeps

The sleep is not restful

The dream is a nightmare

It lasts for days, or weeks, or months

Life for her is lonely

Life for her is cruel

She is a prisoner in her own mind

Can you imagine the torture she must endure?

I love her with my entire being

 

Today my daughter is swollen

Her face and eyes are puffy

Her pupils are dilated

Her sclera is yellow

Her tongue is thickened

Her body is bloated

Her color is gray

Her heart palpitates

She cannot care for herself

She is vacant

She is distant

She is unsure

She wonders, “Am I dead or am I alive”

“Is this real, or am I dreaming?”

Her short-term memory is destroyed

Her relationships are destroyed

Her dreams are destroyed

Her life is destroyed

I love her with my entire being

 

Today my daughter asks, “Why was I put on this earth?”

She says, “I can’t do this anymore.

“I don’t want to live.”

“I want to die.”

“I want peace.”

“I want to be in heaven with God.”

Tears roll down my face too!

I can’t answer her questions

But I continue to give hope

“It will get better,” I say

“It will go away one day.”

“You will live the life you desire and deserve.”

I love her with my entire being

 

Today my daughter went for help

The hospital staff makes assumptions

How can the medical field not understand an organic illness in the brain is no different than

An organic illness in the heart, or the pancreas, or the lungs

They ask, “Why are you here?”

“There’s nothing we can do for you”

Then they call social workers in

If we’re lucky, my daughter won’t be committed

I can care for her better than any psych ward

What shame!

I wonder why they’re even in the

Business of helping people

I go home to care for my daughter alone

Isolated from the world

I love her with my entire being

 

Today my daughter begins life again

Her soul returns

She is young, maybe 3, maybe 5, maybe 10

She’s cute and sweet

She’s funny and mischievous

She’s loving

Her emotions return

She can care for herself again

She can read again

She listens to music

She is waking up from this long, awful nightmare

I love her with my entire being

 

Today I hear the words, “Mom, I’m awake.”

My sleeping beauty returns

The words are bittersweet

Sweet because we know she’s back with us again

Sweet because she can live again

Sweet because she can function again

Bitter because she’s lost her memory

Bitter because she lost more time

Bitter because she lost her self

Some memories come back in flashback form

Which is itself torture

In healing comes pain

But we’ve already been through so much pain

When will it end?

Maybe this will be the last one.

I love her with my entire being.

 

By Diane Wong

How to Find the Right Doctor When Living With KLS

How to Find the Right Doctor When Living With KLS

Every KLS case is similar yet so different. What may help one person, may not work for another. The brain is so complex not every person’s reaction to a treatment is going to be the same. You may need to experiment with different medications and dosages to help you with your symptoms. That is why it is so important to find a good, compassionate doctor who is right for you. Finding the right doctor needs to be a top priority. Once you find the right doctor that is willing to work with you, your quality of life may improve, your health care will improve, you will feel safe sharing information, and you will know that your doctor cares about you. Finding the right doctor for KLS is not going to be easy. It will take effort and patience. A good way to begin your search is to use information from your current doctor’s experience. If you are seeing a doctor at the moment and are unhappy with the care you are receiving, ask yourself these questions. 1) What do I like about my doctor? 2) What don’t I like about my doctor? 3) What type of environment do I want? Writing down your likes and dislikes will provide you with a good list of what you want in a doctor.

How to Find the Right Doctor When Living With KLS

How to Find the Right Doctor When Living With KLS

Because KLS is rare, it may be difficult to find a doctor who knows about KLS. A good starting point is going to the KLS Foundation website and looking at the Doctors Familiar with KLS page to see if there is a doctor in your area familiar with the disorder. Here is the link: http://klsfoundation.org/doctors-familiar-with-kls/

If there is no one on the doctor’s list in your area, try calling one of the doctors closest to your area from the KLS Foundation’s list and ask for a doctor’s recommendation in your area. Or you could ask if that doctor would be willing to see the KLSer. You could search for a Sleep Specialist or a Neurologist in your area. Many Neurologists and Sleep Specialists are interested in rare conditions and would love the opportunity to work with you. Another suggestion is to ask for referrals in the KLS support groups. You can join the KLS Support group by clicking here: KLS Foundation Facebook Support Group. There may be a KLSer in your area who will know of a doctor familiar with KLS.

Doctors see many patients throughout the day, so you need to be prepared and ready for your appointment. When scheduling your appointment to see a doctor, ask how many minutes your appointment will be. Try to schedule enough minutes to get through all your concerns. Be prepared with a list of questions you want answered. An example might be, “What medication can relieve this symptom?” Be prepared to write down important points. Ask the doctor to write down any treatments, symptoms, medications, etc. you may want to research for yourself so that you can decide if that is the approach you would like to take. Having someone with you at your appointment is very important. That person will be your second set of ears and will be able to catch things you may have missed. Remember-you are the expert on KLS. You know your symptoms, your body, and your experiences. The doctor knows treatments. After you decide on a treatment together with your doctor, be sure to evaluate how that treatment is working. Stay on top of your medical decisions and be proactive in your care.

I hope you found this post helpful! If you did, please leave a comment below. I love hearing from you!

With Love,

Alanna

P.S. If you haven’t purchased the Kleine-Levin Syndrome (KLS) Guidebook, you can do so here: http://alannawonglife.com/shop/klsguidebook/ 

Read Disclaimer here: http://alannawonglife.com/disclaimer/

Goodnight KLS! from Randi; USA

The following photo is by: Randi

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Randi for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Glenn; USA

The following photo is by: Glenn

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Glenn for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Mindy; USA

The following photo is by: Mindy

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Mindy for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Mary; Canada

The following photo is by: Mary

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Mary for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Stijn; Belgium

The following photo is by: Stijn

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Stijn for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Mvg; Belgium

The following photo is by: Mvg

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Mvg for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Amy; UK

The following photo is by: Amy

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Amy for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

Goodnight KLS! from Lois; England

The following photo is by: Lois

Goodnight KLS!

Goodnight KLS!

Do you want to participate in the Goodnight KLS! Campain and get a free wristband? It’s easy! Click on the following link to learn more about how you can participate: http://alannawonglife.com/get-kleine-levin-syndrome-kls-wristband-goodnight-kls-campaign/

Thank you, Lois for participating in the Goodnight KLS! Campaign and helping spread the word about KLS!

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