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My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

 

December 24, 2021 | Tabitha Andrews Orth 

My letter to Santa.
ATTENTION: YULETIDE BUREAU 
WISH DEPARTMENT

Dear Santa,
As you know, I have given great thought to my Christmas wish this year.  I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.

Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping, and you know when I am awake. LOL:)

Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.

Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying or judging. I can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!

I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa.  We are talking TOUGH challenge here.

Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.

Sorry, attention span problems, back to my favor. 
But… I have practiced daily random acts of kindness for many years…attention span problems again and paranoia I might not make the cut for that ‘Nice List’.

Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could!
Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.

Okay, I forgot what I was going to say… LOL. Wait, I’ll reread this and write my main point on a sticky note so I can remember my wish. Why am I telling you that? YOU see me. YOU realize everything.
Ok. Wait just one minute for me Santa. Yes. I am back. Got it. My Christmas Wish. (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)

I am having a problem with worry for my future. I have now faced FEAR.  I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. 

This brings me to that favor I mentioned. My Christmas Wish. 
Gosh, Santa, I need your help.

By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best, so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late.   Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year…
But, you know that too… Sorry…..
What was I going to say? Oh, right! My Christmas Wish:)

You’ll find an envelope by your nighttime snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas Wish. 

And when you take your leave, by the way, I LOVE that time suspension magic you do- very cool!

When your laughter rings out within and around our home, can you add a bit of Christmas Spirit Magic to infuse your laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were?  By adding your love and laughter to mine Santa, well, that’s a powerful infusion. Exactly what is needed to receive the appreciation of each day.

My family and I laugh a lot Santa. YOU know. My laughter helps my husband, Jim and our son, Matthew. Their laughter helps me. And so, it goes….

P.S.
Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.

Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) 
Pleasant trip and God speed. 
Best Wishes,
Tabitha 

Tabithas letter to Santa facebook Post 300x251 - My letter to Santa ATTENTION: YULETIDE BUREAU  WISH DEPARTMENT

(Originally written December 17, 2014)


IAES invites you to spread awareness of Autoimmune Encephalitis by sharing this delightful musical spoof utilizing the classic holiday music from ‘Rudolf the Red-Nosed Reindeer’. Learn who identified the most common type of autoimmune encephalitis of them all and where that magical moment occurred.


The Most Common AE Antibody of All  ~  A Holiday Song


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International Autoimmune Encephalitis Society (IAES) is a Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premier organization leading in these vital roles.

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Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

Trivia Playing cards 3 FB 500x419 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

AE Warrior Store 300x200 - The Real-World Challenges of Surviving an Autoimmune Encephalitis Diagnosis

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We Shall Overcome

We Shall Overcome

July 4, 2021 |by Tabitha Andrews Orth, President and Founder of IAES

It was July 4, 2013.

I sat in a plastic chair with my arms wrapped around my knees curled up with my toes pointed to the floor. Non-responsive. Catatonic. I was not aware of the date, as I sat unmoving holding that position from 6am on July 4th until 1 a.m. on July 5th. The white plastic chair I occupied was similar to those cheap stacking patio chairs you see for five dollars at local discount stores. It was one of three positioned in front of what appeared to be a ‘guard station’. It wasn’t a hospital setting. I didn’t know the United States had places like this where human beings were treated with such disdain; malfunctioning rejects of human society. My medical chart referred to me as an ‘inmate patient’. In the early hours of July 5th, someone came and escorted me from that white plastic chair to my bed.

My husband had taken me to the local ER on July 3rd. I was 55 years-old and in full-blown first-time out of the blue psychosis. Just a few weeks before symptoms began to appear, I was a stable, responsible and highly respected woman among my family, friends and community. Since there was no room on the hospital’s Psychiatric ward, I had been transferred to a private psychiatric hospital without a neurological work-up and without my husband being notified of where I had been sent. (We later learned that this ‘hospital’ was a private hospital chain under investigation for abuse and admitting people inappropriately for psych hold lock up streamlining them for commitment with the intention of draining all their insurance coverage).

The ER attending had run a brain CAT scan which showed mild frontal lobe atrophy. He asked if I had ever had an accident that could account for this finding. I never had. He commented that this is what he expects to see in a woman of her mid-eighties. A blood panel showed I had a high white blood cell (WBC) count. I was experiencing tachycardia. I had a B12 deficiency they felt accounted for my memory loss. With no history of mental illness, I was placed on the first of several consecutive psych holds, this one being a 72-hour psych hold, followed by several 5 day holds. Once transferred, the facility holding me drew up commitment papers and arranged a court date to be set to determine if I should be legally committed to the state hospital for a minimum of six months.

I experienced and witnessed unspeakable human cruelty during my 16 days of incarceration there. This was a place where human beings were sent when deemed to be of no value to society. I remember the bugs swarming in the sink, the mold on the shower curtain, the fog finger-smudged mirror and counter in the bathroom, the rust stained germ-infested toilet bowl. The dirty linoleum floors. There were no windows. It was not a ‘hospital’, there was no medical staff or assistance. As I tried to parse out what kind of place this was, I ruled out a prison or jail. It was something ‘other’ than that. I was in very big trouble. That was unmistakably clear to me. I was too sick to help myself although I tried.

The screams from the 4 other patients locked away in this section with me seemed to reverberate against the walls echoing from the acoustics in the chamber of a section we were in. The cleaning crew was not permitted in the section I was being held in as the patients were deemed to be too dangerous.

Today, people with Autoimmune Encephalitis are still being held or committed unjustly without having received a full medical work-up. Although it doesn’t happen today as often as it has in recent history, Autoimmune Encephalitis is recognized more frequently than it was when I became ill in 2013.  It is still under recognized and misdiagnosed as a psychiatric condition in the USA and around the world.   

My husband ‘liberated me’. He hired an attorney. He got me the medical attention I needed. It would be over a year before I was accurately diagnosed.

Independence Day has a different meaning for me today than it did prior to that fateful 4th of July in 2013 where I spent time locked away where liberty did not dwell. I now know what it is like to have my freedom taken from me. I appreciate the gift of Independence personally and reflect on the blessing of being able to lead an independent life. I hold my freedom dear now.

Present day

I live a ‘free’ life and know what it is to NOT live a free life. Each 4th of July that has passed since that horrifying year, Independence Day is a day when I reflect on the gift of being free.

I am in recovery from Autoimmune Encephalitis. Although I have some brain injury, it is nothing compared to how badly impaired I was. Miraculously, with everything against me, I lived! Lack of knowledge about AE was the reason I was almost sent to a state institution and committed.

I founded IAES because I was determined to change the course of people’s outcomes. I felt and feel dedicated to preventing more stories like mine from taking place. Spreading awareness, strong advocacy and increasing research is the path forward. Join me in celebrating our Freedom today and walk with me in a ‘Cyber 4th of July Parade’ for AE in the knowledge that: “We Shall Overcome.”

My medical records reflect that on the late evening of July 4th 2013 I started singing “We Shall Overcome” in a clear and amplified voice. I wish you all a joyful Independence Day. Let Freedom ring.

Diana Ross - We Shall Overcome (HD quality)

Your generous Donations allow IAES to continue our important work and save lives! 

guidestar platinum logo 300x300 1 e1605914935941 - We Shall Overcome

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

Trivia Playing cards 3 FB 500x419 - We Shall Overcome

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

AE Warrior Store 300x200 - We Shall Overcome 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

 

Father’s Day 2021

June 20, 2021 |by Tabitha Orth and Mari Davis

IAES would like to celebrate the fathers and men in our lives. Every year in June we have a day that celebrates Fathers. It is our belief that we should celebrate these men every day. These are the men that have helped us become who we are. These are the men who have shown us support, told us stories with a sparkle in their eye, laughed and cried with us, and danced the dance of life with us! It is our sincere hope you enjoy the two stories below that highlight the role of the magnificent men in our lives….Happy Father’s Day!

——–

by Tabitha Andrews Orth, IAES President

I was 27 years old when my Dad died. It was unexpected. He’d been recovering from a hip replacement surgery and wasn’t feeling at his best. I’d gone to visit him that morning before I was due at work and kissed him good-bye on the forehead, which was my custom.  “I’ll see you tonight” I called out as I walked down the hall with a wave, my back turned to him.   That was our final good-bye.

I’ve lived more that half my life without the physical presence of my Dad. Yet, he has always been a strong present force in my life. Love never dies. That’s the wonder of love. It really is everlasting.

As a child, I remember looking up to my Dad. I mean that quite literally. He was a tall man. I’d look up and up with my neck bent back to see his face. Dad had the bluest eyes that twinkled with laughter, mischief, courage or confidence. They had a sparkle to them that dialed in on the emotion of the moment. He could say more with his eyes than he often did with his words. Yet, he was a verbose and highly entertaining storyteller. A gift few of us possess. His stories, lessons and banter took you on an adventure, or made you really reflect on a topic long after the conversation ended.

I always felt safe and protected as a child with Dad by my side. If I was scared, my fear never took hold because I knew nothing bad would happen if Dad was with me. There is a magic some father’s have in making us feel safe and loved. I was blessed to have a father who created magical moments daily. That’s not a common trait. I recognized that as a child. It was something I valued about my father even more as I grew older. I knew he was an uncommon man.

This Father’s Day some of you will be marking this day without your Dad by your side.  Whether it is your first Father’s Day since your Dad’s passing or, like me, years without your Dad. Our minds still fill with memories of our father. The laughter, special moments or occasions will stand out freshly in our memories.  We spend the day thinking about our Dad and appreciating the time we had together. That will never change. Our love never dies. It is everlasting. My relationship with my father didn’t end on March 8th, 1985, it simply changed. Happy Father’s Day, Dad! I love you!

1963 Newport Harbor, California. Tabitha at the helm, age 5. Pictured with her Dad, older sister and younger brother.

By Mari Davis

Four years ago, I went to work as a nurse case manager like I had done every other day. I had not had any different or odd symptoms that I recognized before this fateful day. This was during a time in our lives that my husband, as an athletic trainer, worked long hours. We were both busy. At times, and on some days, we would see each other only in passing. If there were any signs of anything happening to me, he didn’t have an opportunity to see them.

While at work, I shared an office with a nurse I have worked with for twenty years or so. She recognized something was not right. She took my keys from my purse. Oddly, I was not upset when I could not find the car keys. Normally I would have been very bothered by this. I went to the unit to do some needed work and while there began to have seizures. In the meantime, as soon as I had left our office, the coworker who had taken my keys called my husband to tell him that she felt something was wrong with me.

After being diagnosed with sero-negative Limbic Encephalitis, I was treated with steroids, IVIG, plasmapheresis and was started on anti-seizure medications to help control my remaining seizures.  After treatment was completed and I was stabilized, I was transferred to a rehabilitation facility. I had a short-term rehab stay and was then discharged home where I started rehabilitation therapy from home. 

During this time, my husband had to call my parents, children, siblings, and friends to let them know I was in the ICU and explain that the doctors were trying to figure out what was happening and what my diagnosis could be.

He had to figure out bank accounts, college payments, bills, etc., all the things that I had previously taken care. My husband is not a person to get worked up or upset about things. He has always been that person who takes life and issues step by step to work everything thru. He was able to figure out my previous job’s benefits such as sick days-, short- and long-term disability. These are all things I had taken care of previously and did this kind of work as part of my profession. In short, my husband had to step up and step into taking hold of the wheel of a well-oiled machine that, in a sense, had suddenly gone off the tracks.

Families and friends often wonder, how can they help the person with Autoimmune Encephalitis? What will be felt as helpful? What might make things worse? There are many ways to offer help to an AE warrior and their family, but one of the most important is to realize the person with AE is still the person they know and love with some changes. Personally, I can share that my husband continued to see the parts of me that were still the same. I still had/have a sense of humor. My husband could and still can see thru the illness or disease to the real person I am and have always been. That although I now had memory issues, I was still smart, and with direction, I could do many of the things I had done prior to the onset of my disease.

As time went on, he figured out what I had trouble with. As with many AE warriors, I have memory issues for those things and events that have happened within the few years prior to diagnosis.  For example, if I was cooking and couldn’t find a pan, I might call him. He became familiar with where everything was in the kitchen and household so he could help direct me and this in turn gave me confidence. He encouraged me to be as independent as safely possible. Chores I was normally in charge of such as making a grocery list, or doing laundry, he encouraged and helped me with which gave me the confidence necessary to accomplish them independently.

I learned many safety strategies during my rehabilitation. For example, I always use a timer when cooking because I do not have a sense of smell and need that safety net so I either don’t forget I have something in the oven or fall asleep. I had to take a special driving test to continue to drive. To be honest, I learned many strategies that made me a much safer driver than I previously was. My husband takes time to remind me of the things I can do and remain good at. Many of us still possess those brain pathways that retain the neural networks that house many things from our past and are still in our long-term memory. If stores and streets and buildings and all other things in town have changed, as we know they always do, my husband has the patience and takes the time to review all these things with me. He helps me navigate the fastest and easiest way to get here and there. If I need to park, he will go over the best place to park and how to get there.  

I have learned that many of the things I chalked up to having a great memory where more likely due to routine. When we have routines, such as certain places we park or certain days we grocery shop, this eliminates the need to think things thru. It is simply routine.  When I was in day rehab, I really struggled with my disability. My routines and various ways of doing everything were completely disrupted. At times I felt as though going to rehab just reminded me of my disease and disability and how much my life had changed.  Each day before I left for rehab, my husband danced with me. He tried and did find things that I liked and loved, and he would do them with me to lift my spirits, give me confidence and help me move forward in a positive way.

I suppose much of this means being in tune with and paying attention to the person with AE or other brain diseases. Identifying things they are still able to do, helping them to not become frustrated, and encouraging or simply empowering them to become the best they can be. Importantly, being a part of this process as much as possible. Many of us may need reminders or help staying mentally and physically organized. We may not have needed this assistance in the past. My husband has found ways to assist me to do this the best way possible for myself and has helped me to find new strategies to accomplish independence and success. He has encouraged exercise by us doing it together. AE as well as many other illnesses and events, such as coronavirus, can and has left many feeling isolated.  Doing things together, such as exercise or helping me to learn tasks that in the past were routine, not only helps the patient but also build the bond between the caregivers/loved ones and patients.

For husbands and fathers and many men, when the women and children in their lives develop Autoimmune Encephalitis they step into roles or tasks that they may not have previously done. They not only support the women and girls with AE but also learn and support the family as a whole.  They are our main supporters, while still managing their own feelings. The role of these men may be the one their children, families and friends turn to for comfort and explanation all the while managing the homes, their own feelings and being the major mental, physical supporter, and cheerleader of the women or child. These are the men the AE warrior women and children depend on. The family depends on them for their support and strength. In the past, many women have commonly taken the role of holding the family together by performing the daily responsibilities we are all familiar with that need our attention. These men have stepped up and into that role without hesitation!

So, we celebrate Father’s Day! We celebrate the men in the lives of AE women and children! We thank you!  For without you, we would most certainly not have made such strides in our recovery and AE journey….

Mari Davis and her husband

Mari Davis with her family in front of the home she grew up in

Your generous Donations allow IAES to continue our important work and save lives! 

 

 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

 

Honoring Mothers in the Autoimmune Encephalitis Community

May 9, 2021 |by Tabitha Orth, IAES President 

Honoring Mother’s in the Autoimmune Encephalitis Community:

Happy Mother’s Day from International Autoimmune Encephalitis Society!

—-

How this piece by Erma Bombeck came to me will always be fresh in my memory. There was a synchronicity to it that touched my heart.  Our son Matthew is now 30 years old. When he was four, I was fortunate enough to be accepted into a very elite advocacy training program for people with disabilities called Partners in Policymaking. Raising a child with autism is hard. Attending a yearlong program that met for a 3-day weekend each month was challenging for Jim and me as Matthew required 24/7 care and without back-up, that meant Jim would only get a few hours of sleep a night during those periods.

On this weekend, I was to give a presentation. A break was scheduled right afterward. So, people got up to mingle after my presentation. The room was packed with a few hundred people milling about. As I stepped off the stage, I noticed a woman weaving her way through the crowd toward me.  She wore a brown hat and was about a foot shorter than my 5’4”, I vividly recall.  She came up to me and handed me a piece of paper, smiled, nodded her head to gesture that she was pleased and that she had completed her task, and then wordlessly turned around and wove her way back through the crowd. I remember following that hat with my eyes wondering at her silent retreat.

Then I looked down at the paper she had given me and saw its age. Three of the edges were dusty brown with the remainder a greyish white that told me it had been kept in a book smaller than the size of the page for many years. The paper itself was from an old-fashioned mimeograph machine from the 1960’s. The texture had that slick feel I recalled from my days in elementary school. This dated the paper back more than thirty years. The crisp edges had worn away years ago as they were now softened, curled and brittle enough with cracked tears in the mimeograph paper all a witness to its age.  The print was faded with wavy lined sentences from the imprecise printing of the drum of the machine.

This is what it said.

Choosing “Special” Mothers 

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 660,000 women will become mothers of a child with a disability.  Did you ever wonder how mothers of children with disabilities are chosen?

Somehow, I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation.  As he observes, he instructs his angels to make notes in a giant ledger.

“Armstrong, Beth, son.  Patron saint: Matthew.  Forrest, Marjorie, daughter, Patron Saint: Cecilia.”

“Rudledge, Carrie, twins, Patron Saint…Give her Gerard.  He’s used to profanity.”

Finally, he passes a name to an angel and smiles.  “Give her a disabled Child.”  The angel is curious.  “Why this one, God?  She’s so happy.”

“Exactly,” smiles God.  “Could I give a disabled child to a mother who does not know laughter?  That would be cruel.” 

“But, has she patience?” asks the angel.

“I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair.  Once the shock and resentment wear off, she’ll handle it.”

“I watched her today.  She has that feeling of self and independence that is so rare and so necessary in a mother.  You see, the child I’m going to give her has his own world.  She has to make it live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”

God smiles, “No matter.  I can fix that.  This one is perfect, she has just enough selfishness.”

The angel gasps.  “Selfishness, is that a virtue?”

God nods.  “If she can’t separate herself from the child occasionally, she’ll never survive.  Yes, here is a woman whom I will bless with a child less than perfect.  She doesn’t realize it yet, but she is to be envied.  She will never take for granted a spoken word.  She will never consider a step ordinary.  When her child says ‘Momma’ for the first time, she will be present at a miracle and know it.  When she describes what a sunset makes her feel like to her child, she will see it as few people ever see my creations.” 

“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above these.  She will never be alone.  I will be at her side every minute of every day of her life because she is doing my work as surely as she is by my side.”

“And what about her Paton Saint?” asks the angel, his pen poised in midair.

God smiles.  “A mirror will suffice.”

By: Erma Bombeck

 

Your generous Donations allow IAES to continue our important work and save lives! 

 

 Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

 

My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

 

December 24, 2020 | Tabitha Andrews Orth 

My letter to Santa.
ATTENTION: YULETIDE BUREAU 
WISH DEPARTMENT

Dear Santa,
As you know, I have given great thought to my Christmas wish this year.  I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.

Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping, and you know when I am awake. LOL:)

Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.

Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying or judging. I can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!

I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa.  We are talking TOUGH challenge here.

Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.

Sorry, attention span problems, back to my favor. 
But… I have practiced daily random acts of kindness for many years…attention span problems again and paranoia I might not make the cut for that ‘Nice List’.

Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could!
Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.

Okay, I forgot what I was going to say… LOL. Wait, I’ll reread this and write my main point on a sticky note so I can remember my wish. Why am I telling you that? YOU see me. YOU realize everything.
Ok. Wait just one minute for me Santa. Yes. I am back. Got it. My Christmas Wish. (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)

I am having a problem with worry for my future. I have now faced FEAR.  I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. 

This brings me to that favor I mentioned. My Christmas Wish. 
Gosh, Santa, I need your help.

By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best, so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late.   Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year…
But, you know that too… Sorry…..
What was I going to say? Oh, right! My Christmas Wish:)

You’ll find an envelope by your nighttime snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas Wish. 

And when you take your leave, by the way, I LOVE that time suspension magic you do- very cool!

When your laughter rings out within and around our home, can you add a bit of Christmas Spirit Magic to infuse your laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were?  By adding your love and laughter to mine Santa, well, that’s a powerful infusion. Exactly what is needed to receive the appreciation of each day.

My family and I laugh a lot Santa. YOU know. My laughter helps my husband, Jim and our son, Matthew. Their laughter helps me. And so, it goes….

P.S.
Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.

Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) 
Pleasant trip and God speed. 
Best Wishes,
Tabitha 

(Originally written December 17, 2014)


IAES invites you to spread awareness of Autoimmune Encephalitis by sharing this delightful musical spoof utilizing the classic holiday music from ‘Rudolf the Red-Nosed Reindeer’. Learn who identified the most common type of autoimmune encephalitis of them all and where that magical moment occurred.



Your generous Donations allow IAES to continue our important work and save lives!


International Autoimmune Encephalitis Society (IAES) is a Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premier organization leading in these vital roles.

 

Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.

Giving Thanks!

November 26, 2020 | By Jeri Gore

I have often pondered over this day throughout my life. From being with loads of family laughing over a huge turkey dinner and all the talk and smiles and analyzing whose stuffing is best and simply being together. To being away at college or jobs that have carried us off and unable to return home for Turkey day. I have thought about those with less and those with more. Those with illness and those in seemingly perfect health. Always and I mean every single time I have found thanks. This is not to say, I have not felt a twinge of ‘wow, where am I now’ but true and honest thanks because at every turn I have learned something, and I am grateful for it. I like to separate the word Thanksgiving to Thanks and Giving.

This has been a year like no other. This can be said for each year I realize, and many many generations have crossed bridges and had years they can say this for. For us, at this point in time, this has been a year of highs and lows like I, for one, have never seen or heard.

I would like to Give Thanks to all of you at IAES. I am an AE Warrior and have newly been introduced to a group of people across the continent and globe that have had a hand in helping me get to this place where I am this year. This organization has helped not only me but my family, loved ones and caregivers. I want to say and give thanks to IAES. Thanks for your guidance, virtual smiles, endless conversations (at all hours) with my husband regarding ‘what the hell is happening to Jeri’ and offering to simply be there at every turn. From my heart, THANK YOU all! There are many others that feel this same way.  I have the distinct honor to express the feelings of many here. Happy happy Thanks and Giving…..

~Jeri Gore

 

Your generous Donations allow IAES to continue our important work and save lives!  

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

 

For this interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

 

 

Be a part of the solution by supporting IAES with a donation today.

 

Fun Halloween Activities in a Social-Distancing Year

October 6, 2020 |  By Tabitha Andrews Orth and Mari Wagner Davis

Every parent or caring adult knows all kids have gone through enough this year that they deserve to have a fun and memorable Halloween celebration, keeping in mind the Covid-19 rules of necessary social distancing.

Trick-or-treating will certainly look and feel different this year (the masks alone will change costumes – maybe with a little creativity for the better!), and you can make sure every child gets to experience the candy, the costumes, and the fun of this truly kid-friendly event. Here are some tricks you can use to make this Halloween a treat for most families.

AT-HOME EVENTS (for Small Kids and Immunocompromised Attendees)

Stage a Trick-or-Treat in Your Home: Set out buckets of candy in different rooms, decorate each door in a special way, and play Halloween music. Instead of going door-to-door in the neighborhood, kids go door-to-door in your house. Add to the fun by carving or decorating pumpkins with members of your household and displaying them.

Do a Twilight Hunt: Adhere glow-in-the-dark stickers to goody bags and hide them all over the backyard. At dusk, give each child asmall flashlight and send them searching for treasure. Carving or decorating pumpkins outside, at a safe distance, with friends or neighbors, is an added bonus.

Host a Mask Costume Contest on Zoom: Pictures can be submitted to an appointed judge. Then, friends submit to design the judge the designs of personal or a family’s set of face masks. Gather together over Zoom to see who has come up with the award-winning single mask and set of masks.

Create a Backyard A-Maze: Set up a family obstacle course with booby traps and haunts. Ask the kids to collect balls to win a prize. A few options here would be:

  • Spray them with Silly String as they grab candy.
  • Get them to venture behind caution tape where another family member can jump out from a hiding spot.
  • Setting up a series of weblike structures that make the kids crawl under the webs to reach goodies.

Stage a Halloween-Themed Meal: Organize a Halloween-themed meal at home with your family members. Get creative with your meal choices, thinking up fun ways to present traditional meal items geared toward this holiday. Need help? Check out the Weelicious blog for some fun ideas! 

GROUP EVENTS

The Halloween-themed meal described above can also be staged for larger groups, too, in an outdoor location when eating and socializing with larger groups. In fact, there’s an opportunity to maximize the fun for adults if there’s competition involved in either the set-up or the food – or both!

Organize a Schoolwide or Other Parking Lot Trick-or-Treat: If the weather will cooperate, it’s easy enough to stage this in a large, local parking lot. Decorate the cars or trunks before gathering to give and receive candy. With everyone wearing a face mask, park in alternate spots, and place cones six feet from each car’s trunk. Include a rope at the end of each cone that’s clipped with candy for trick-or-treaters. By planning this in advance, you may be able to ask businesses inclined to participate (especially those are geared toward children) to donate candy, coupons or other treats to the event. If the space allows this, add an outdoor Halloween movie with people/families spaced six feet apart.

Do a Window Treasure Hunt: Pick a Halloween symbol – something simple like a witch’s hat – and then let the kids cruise the neighborhood to try to find as many as they can. This works best by coordinating in advance with neighbors, encouraging them to dress appropriately and creating a station outside of each partipating home with glow tape to mark social distancing. Toss treat bags or stock a station made up as a caldron or witch’s table with treats, so each child can come up to it to get a treat left by the retreating witch. Lights and music can enhance this event dramatically! Other fun ideas for this are in this video, including how to make glowin-the-dark chalk to create social distancing, games, a maze that gives clues to the next treat stations, etc. Let your imagination guide you. 

Host a Zoom Costume Party or a Photo Shoot: Have a Zoom costume party to demonstrate your creativity. For safe social distancing, dress the kids up, set up a backdrop outside and let each of them ham it up for their own mini photo shoot. Give treats and prizes to all participants and a memorable photo to make the occasion.

Reversed Trick-or-Treating: Organize a “You’ve Been Booed” event with your friends and neighbors. Get the word out by text, e-mail or phone to explain the game, asking people to sign up for a “Secret Boo.” Every participant’s name is put in a bag and each person is assigned who they will “Boo” by a drawing. Ring the doorbell of the person’s name you receive, leaving a bag of goodies out front, and running away before the door is opened. Tape a big sign to the bag that says, “You’ve Been Booed!” along with the recipient’s name and signed by the giver so they know whom to thank.

Host an Online Jack-o-lantern Event: Make sure entries are put in age categories – painting for the kids and carving for adults – so pumpkin art is judged among peer groups. Pictures can be submitted to an appointed judge. Have treats and prizes for all participants. In the event this is done in a neighborhood, light your jack-o-lanterns at a marked social distance when it’s dark enough to see each work of art. Judging and treat- and prize-giving can be done at a social distance.

Organize a Halloween Car Parade: Car parades can be a lot of fun. Music and lights can add to your Halloween caravan. Create a “drive-by event” or contest where individuals dress up or decorate their vehicles and drive by multiple judges’ homes, with a Zoom event after for awarding prizes.

“Drive-through events” are where individuals remain in their vehicles in an area with Halloween displays. Participants can receive a treat bag of commercially packaged non-perishable treats. Contact local places of worship, schools and locations that have large parking lots to see if you can arrange an event at a central location.

Door Decorating Competition: Get neighbors, friends and family living nearby to sign up for a door decorating competition. Then walk or drive by each house to view the spooky scenes. Arrange for treat-giving at each location by texting or calling the house to announce your arrival. Treats can be placed on the hood of your car (hopefully by someone in costume) so the kids can get out and retrieve their treats while social distancing. Again, appoint a judge in advance and host a Zoom after to award prizes for the best door.

Halloween Window Letter Hunt for Kids: This is a great activity that still involves the neighborhood! Contact your neighbors via text, phone or a neighborhood Facebook group. Pick a secret word relating to Halloween, e.g. Ghost, Witch, Goblin, Frankenstein or Vampire. Each home participating is assigned a letter in the secret word. They then create the letter they are assigned with Halloween art. Here is a link to inspire you.  A list of participating addresses is posted in front of each participating house so passersby can join in the fun and everyone has the correct addresses. Walk or drive to each house on your list and look for the letter that will be posted by a specific date and time to signify the beginning of the hunt. Make a note of each letter you find at each house. At the end of the hunt, unscramble the letters to solve the word scramble puzzle and discover what the secret word is. Text the organizer the secret word so they know you have solved the trick. Celebrate solving the puzzle trick by having a Halloween-themed meal at home, a special dessert, Halloween family movie time or a candy hunt in your yard or home.

Visit a Pumpkin Patch or Orchard: Be sure in advance that attendees use hand sanitizer before touching pumpkins or picking apples, and that wearing masks in enforced as is social distancing.

A Few Key Notes to Remember

  • If you are preparing goodie bags, wash your hands with soap and water for at least 20 seconds before and after prepping the bags.
  • A costume mask (such as for Halloween) is not a substitute for a cloth mask. A costume mask shouldn’t be used unless it’s made of two or more layers of breathable fabric that covers the mouth and nose, leaving no gaps around the face and mouth, leaving no gaps around the face.
  • Don’t wear a costume mask over a protective cloth mask because it can be dangerous if the costume mask interferes with normal breathing. Consider getting creative by using a Halloween-themed cloth mask.
  • If screaming will occur, greater social distancing is advised. The greater the distance, the lower the risk of spreading a respiratory virus.
  • If you attend any event, ensure appropriate mask use is required and enforced, and that all groups remain more than six feet apart.

Your generous Donations allow IAES to continue our important work and save lives! 

 

Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store!  This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.  

 

Be a part of the solution by supporting IAES with a donation today.

 

 

 

Thanks Dad!

June-21-2020 | Leslie Holland

My dad and my brain go back more than a few decades. When I was two, he convinced my eldest sister she could teach me to read, which I insisted upon in order to move on from coloring books. It wasn’t that I was bored with Dad reading Dr. Seuss to us before bed, it was a fascination with the stories that I wanted MORE.

Among my rather large family—including more than a dozen cousins, with whom our young parents raised more like a collective of siblings—I was given the nickname “The Brain.” I took no offense at the name (until adolescence finally kicked in); rather, I relished reading in a corner when the rest were doing anything else.

It paid off, too. I was immediately admitted to the public school’s advanced program, while my four siblings attended the local parochial school. Dad generally drove us to school and I was the final drop-off, during which time he encouraged my academic achievement in multiple ways, whether quizzing me on spelling words or asking me to solve math problems in my head.

Dad was in advertising, heavily involved in political campaigns, which also set the stage for my career in public relations and marketing—including a stint as a registered lobbyist for the Health Insurance Association of America. As a matter of course, the last three people who hired me asked in the interviews whether I was his daughter. My answer weighed heavily in my favor.

Fast-forward to November 2018… During dinner with my boyfriend, I said something so out of course with our conversation, that Tim was stunned. The next day I had no recollection of it and he insisted I see my internist, who knows me well enough that I was sent immediately for an MRI. Limbic encephalitis was rampant and the obvious diagnosis. (I’ve had epilepsy for nearly 30 years, due to an entirely separate and resolved diagnosis, so all seizure activity was well-controlled, making my memory issues the trigger in my case.)

Upon receiving this new diagnosis, I communicated it to my family. My sister, Suzanne (the one who taught me to read), is now a bioethicist in Washington state, and she arranged for me to be seen at Mayo Clinic for a consult with Dr. Sean Pittock, who agreed out of professional courtesy. Immediately upon meeting me during my office visit, he admitted me and began my steroid treatment.

During this time and since, Suzanne, Dad and I have been in daily text communication. Sometimes it’s related to my encephalitis, though often it’s about our beloved University of Louisville Cardinals, the Chicago Cubs, Thoroughbred racing, or the political antics of the moment. Never has Dad wavered in his commitment to my wellness.

Once it became apparent that working at a job I once loved was no longer possible because of my significant memory issues, he has continued to nudge me along intellectually. He’s convinced “The Brain” will overcome and achieve in new ways. There are days I’m not yet there with his belief, but more often than not, I’m still the kid who’s being quizzed in the car on the way to school.  Happy Father’s Day, Dad!

Terry Holland

She Didn’t Stand Alone, She Had Her Father

June-21-2020 | Mari Wagner Davis

 

She did not stand alone, but who stood behind her, the most potent moral force of her life was the love of her father.  Harper Lee.

Father’s Day is a day we celebrate our fathers. We may take them out to dinner, send a card, or make a special phone call. There have likely been times when we have argued or butted heads with our fathers. Times when they have come to our rescue. Times when they have chewed us out for doing something goofy. I didn’t really realize how important my parents, my father is, in my life until I had seizures and was diagnosed with autoimmune encephalitis.

Growing up, my Father’s goal was to make sure we were competent, independent adults. We had to learn to read a map, change our oil, when we were five he helped us open our own bank accounts and made sure we put money in them to save. One thing he couldn’t protect me from or prepare me for was autoimmune encephalitis. But as always, my parents have stood behind me, loving me, supporting me, at times holding me when I cried from the frustration of not being who I was before and celebrating the small goals I have achieved as I have inched along in my recovery.

Events one doesn’t conceive of celebrating such as when I completed day rehab, passed my special driving test so I could resume driving, and when I was able to stay up all day without a nap. (Autoimmune encephalitis makes you celebrate the small things).my Father celebrated with me.

So, when we feel alone, know that whether we still have our Fathers physically with us or not, they stand behind us, cheering us on.

Happy Father’s Day DadWillard Wagner

 

 

Become an Advocate by sharing your story. It may result in someone receiving an accurate diagnosis who is suffering right now and is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

 

International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’s ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.

 

 

Be a part of the solution by supporting IAES with a donation today.

 

 

My letter to Santa ATTENTION: YULETIDE BUREAU WISH DEPARTMENT

 

December 23, 2019 | Tabitha Andrews Orth 

My letter to Santa.
ATTENTION: YULETIDE BUREAU 
WISH DEPARTMENT

Dear Santa,
As you know, I have given great thought to my Christmas wish this year.  I hope I have made your ‘NICE LIST”, as my wish is in the form of a favor.

Since I am awake, due to insomnia from the IV Solumedrol infusion I received yesterday afternoon, I thought it was a good time to write you. I guess I didn’t need to tell you that, since you see me when I am sleeping, and you know when I am awake. LOL:)

Sometimes the lessons we need to learn to grow our soul and faith come in the most unexpected forms. I have realized the truth of this and am doing my best to rely on my faith, to celebrate the love and support I receive and do my best to face my adversity.

Santa, I have to be totally naked in my honesty here. As Head Elf, embodied with the Spirit of -now here’s my word finding problem rearing its head… It means to love without qualifying or judging. I can’t remember how to say it Santa, but you get me. How could anyone ever imagine they would get a disease where your immune system attacks your brain?!

I mean if my brain isn’t working right, nothing works right. That’s a hard thing Santa.  We are talking TOUGH challenge here.

Santa, you know this. You have been watching. I don’t have to explain because you have lived it with me. Yeah, I’m totally on the “NICE LIST”.

Sorry, attention span problems, back to my favor. 
But… I have practiced daily random acts of kindness for many years…attention span problems again and paranoia I might not make the cut for that ‘Nice List’.

Santa, this disease has created personality changes that are not the heart of me. It has taken ME away before with episodes of psychosis twice now. I am inside. In my heart, buried deep, I am ME. People were not able to see ME when my brain disease flared in this way, but YOU could!
Sorry, I will try to stay on topic. Attention Span problems, but YOU know this.

Okay, I forgot what I was going to say… LOL. Wait, I’ll reread this and write my main point on a sticky note so I can remember my wish. Why am I telling you that? YOU see me. YOU realize everything.
Ok. Wait just one minute for me Santa. Yes. I am back. Got it. My Christmas Wish. (That is what I wrote on the sticky note. Oops, sorry, forgot. Don’t need to tell you that.)

I am having a problem with worry for my future. I have now faced FEAR.  I have stared it down. I have survived. I get scared sometimes. YOU know I do. My faith and spiritual beliefs sustain me; through them, I draw my courage and do my best to surrender my fear. 

This brings me to that favor I mentioned. My Christmas Wish. 
Gosh, Santa, I need your help.

By the way, Jim says guys like peanut butter cookies and oatmeal raisin the best, so we will be leaving those out in their usual place by the Cocoa. Feel free to use the copper pot I leave out for you to warm up your Cocoa in case you find yourself running late.   Oh, the carrots for the Reindeer are grown by local farmers- I am adding some lovely fresh pears this year…
But, you know that too… Sorry…..
What was I going to say? Oh, right! My Christmas Wish:)

You’ll find an envelope by your nighttime snack. I’ve enclosed all my fears and worries inside. Could you kindly take them from me? That is my Christmas Wish. 

And when you take your leave, by the way, I LOVE that time suspension magic you do- very cool!

When your laughter rings out within and around our home, can you add a bit of Christmas Spirit Magic to infuse your laughter, Joy, and that kind of love I can’t remember the name of …within our home, our hearts and my brain where my fears and worries once were?  By adding your love and laughter to mine Santa, well, that’s a powerful infusion. Exactly what is needed to receive the appreciation of each day.

My family and I laugh a lot Santa. YOU know. My laughter helps my husband, Jim and our son, Matthew. Their laughter helps me. And so, it goes….

P.S.
Should you find other letters written by people with Autoimmune Encephalitis, whether they be drawings by children, a single word, or simply the breath of fear blown inside an envelope and sealed, my wish is that you take these too and leave your laughter.

Oh, make yourself at home as long as you would like Santa. The weather across the Northern Hemisphere is projected to be quite cold. There are extra blankets in the hall closet. Help yourself. When you are working your way across the Southern Hemisphere and get to Sarah’s house in New Zealand since it is Summer there and you won’t need them any longer, you can leave the blankets with her and she’ll get them back to me on her next visit;) 
Pleasant trip and God speed. 
Best Wishes,
Tabitha 

(Originally written December 17, 2014)


IAES invites you to spread awareness of Autoimmune Encephalitis by sharing this delightful musical spoof utilizing the classic holiday music from ‘Rudolf the Red-Nosed Reindeer’. Learn who identified the most common type of autoimmune encephalitis of them all and where that magical moment occurred.



Your generous Donations allow IAES to continue our important work and save lives!


International Autoimmune Encephalitis Society (IAES) is a Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.

Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premier organization leading in these vital roles.

 

Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

Travel Tips for the AE Warrior

December-18-2019 | Mari Wagner Davis, RN

Last Summer my husband and I traveled to Italy to celebrate our 25th wedding anniversary. Not only was it special because it was our 25th anniversary, but special because we had survived 2 years after my seizures and diagnosis with autoimmune encephalitis.  My husband has learned a variety of tricks to help me feel more comfortable in any environment. Traveling overseas, was something we hadn’t done since I got sick.

I found the following tips helpful and wanted to share them:

 

  1. If you haven’t traveled at all since you were diagnosed, consider doing a weekend stay close to home, to help identify any issues like finding the room, remembering which floor you are on) ahead of time.

2. Bring your insurance cards with you, physician’s phone number and important medical records(I had mine copied to a computer disc).

 

3. Make sure you have reservations and confirm them, keep a folder where you can write down confirmation numbers.

 

4. Provide your family members with your itinerary, including phone numbers.

 

5. Identify how to get medical help in countries where you do not speak the language.

 

6. Consider using a travel agent that specializes in planning trips for people with disabilities.

 

7. Plan on addressing jet lag before you leave. Try to adjust your sleep schedule a couple of hours to the time zone you will be in.

 

8. Adjust scheduling your medication schedule as close as you can to the time zone you are traveling to a week or so before you leave.

 

9. While flying try not to sleep too much especially if you will be arriving in the evening.

 

10. Set your watch to local time so you do not get confused.

 

11. Drink plenty of fluids.

 

12. Daylight can reset your internal clock, be aware that you may need to nap to adjust to the different time zone.

 

13, One trick I have found helpful in hotel rooms is to leave the bathroom light on, so I can find it in the middle of the night.

 

14. Finally, be flexible and have a sense of humor!

 

Your generous Donations allow IAES to continue our important work and save lives!

Become an Advocate by sharing your story. It may result in an accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org

 

 

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Our website is not a substitute for independent professional medical advice. Nothing contained on our website is intended to be used as medical advice. No content is intended to be used to diagnose, treat, cure or prevent any disease, nor should it be used for therapeutic purposes or as a substitute for your own health professional's advice. Although THE INTERNATIONAL AUTOIMMUNE ENCEPHALITIS SOCIETY  provides a great deal of information about AUTOIMMUNE ENCEPHALITIS, all content is provided for informational purposes only. The International Autoimmune Encephalitis Society  cannot provide medical advice.


International Autoimmune Encephalitis Society is a charitable non-profit 501(c)(3) organization founded in 2016 by Tabitha Andrews Orth, Gene Desotell and Anji Hogan-Fesler. Tax ID# 81-3752344. Donations raised directly supports research, patients, families and caregivers impacted by autoimmune encephalitis and to educating healthcare communities around the world. Financial statement will be made available upon request.

CONTACT US


352-527-2470

IAES@AUTOIMMUNE-ENCEPHALITIS.ORG

Autoimmune Encephalitis Trivia Playing Cards

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