Friday, July 27, 2012

Seeing Right Through Me...

For the past several years, I've found myself stumbling into old friends at the most random of moments, and have learned something that I have come to discover, every Lyme Patient knows: I LOOK FINE. 

In fact, no one would ever expect that I was even remotely ill. It's actually become kind of an art of mine, hiding my physical, cognitive, and emotional symptoms from everyone, hell - if you look at my facebook pictures you could almost call me a liar...but deep inside I'm always yearning to actually feel how I look.

It's surprising, but this wasn't always the case, I did have a period where a handful of some very unfortunate souls witnessed what Lyme ACTUALLY looks like. One of them even wrote about it in an effort to help me win a war I was entrenched in for over two years with disability. 

I will forever be grateful to him for writing this. I barely remember anything that happened during that last couple of months in 2007, and without it, I would never know what a normal person must "think" when they witness something as crazy as this...Clark, I miss and love you very much, thanks for watching me go through hell and having the guts to write about it xo   

Here is the letter NY Disability received:

2607 Halm Avenue
Los Angeles, California, 90024 
(310) 903-7282 

October 13, 2009
To Whom It May Concern:

I have been asked to describe my observations of the physical and mental condition of Sarah Lamando during the fall and winter of 2007.

At the time, Ms. Lamando and I both resided in apartments at 4437 Ambrose Avenue in Los Angeles. When I first met Ms. Lamando in early 2007, she was full of energy and enthusiasm, practicing yoga, horseback riding and several other sports on a daily basis. She led me on many energetic hikes through nearby Griffith Park. In conversation, her mind was sharp and witty. She was, in other words, a happy and healthy young woman with an infectious enjoyment of life.

Beginning in September 2007, I witnessed a shocking change in her physical and emotional demeanor. She lost weight rapidly and her healthy skin tone grew pale and sallow. She became inexplicably disoriented in the middle of conversations. Once, at a restaurant, she became so confused and withdrawn from her surroundings that we were forced to abandon our meals. I gently escorted her back to her apartment where she collapsed in bed and could not move for several days.

She had just been hired as a massage therapist at one of Los Angeles’ most renowned health spas, and her clientele included celebrities in the entertainment industry. This was her dream job so it was especially heartbreaking when her decline became so debilitating that she could no longer work. Her physical grace and strength vanished and she began to suffer frightening seizures. This happy and healthy young woman had, in a few short months, been reduced to a bed-ridden shadow of her former self. It was devastating to witness.

In December 2007, Ms. Lamando’s condition had become so life-threatening that she was forced to give up her dream of living in Los Angeles and return home to New York, where she immediately began intensive treatments for her condition.

I have witnessed family and friends suffer from a variety of ailments, including cancer, alcoholism and manic depression. Ms. Lamando’s physical and mental deterioration during this period was more rapid and severe than anything I have ever experienced.

I knew little about Lyme Disease before meeting Ms. Lamando. Since then, I’ve educated myself about this chronic disease. I understand that Ms. Lamando has worked hard to regain some of her health, and for that I am thankful. But it frightens me to realize that she can suffer a relapse at any time.

I hope this letter serves to illuminate particulars about Ms. Lamando’s medical condition. If I may provide any further information, please do not hesitate to contact me at the above address and phone number.


Clark Perry

I think the saddest part about the letter is that, however horrific it may sound, it is still only a fraction of what was really happening to me. The scariest part about it is that it can happen to ANYONE...

If you are considering on contributing to our indiegogo campaign, please, don't wait till the last minute. Trust that there is a reason I picked this organization, and please realize that I did it in an effort to protect future generations....

My grandmother used say to me, "Thank God you have your health, Sarah," and I used to laugh at her not understanding what it meant to NOT have something I felt was so obviously "there". Now I know what she meant and pray that at such a young age, you never do, but if so, that there will always be a place for you to go.

All My Best,


Anonymous said...

OMG - this made me ball my eyes out. Today is one of those days where I am so over having Lyme disease.

Sarah Lamando said...

I sincerely hope your day being with being "so over" having lyme is...over : ) I know what you mean when you say "Today is one of those days," but however slow those days may feel, they DO end...keep hanging in there - it DOES get better...
All my best and sincerest sympathies,
Sarah said...

love your story and your page. praise almighty for your outreach! i too am a fellow chronic lyme sufferer... two years and 3 months into my journey with lyme. I. must agree with you that "it does get better" when we gain knowledge and understanding of the disease and make healthy choices. We the sick must be the ones to forward change... in care, treatment and YES, even belief in the fact that chronic lyme does exist. I desire to share, help, pray and hope for and, with; all humans who suffer. Knowledge hard gained should be freely shared and assistance given where one can. I myself have no monetary resources whatsoever at this time, only a measurement of health and, a wealth of gratitude for each day sprinkled well with happiness and servitude. Prayers for you and your mission Sarah!!

Anonymous said...

Thank you for sharing,! May God bless you. I've had chronic Lyme Disease for two years...a few months ago my oldest daughter was also diagnosed. Even with positive blood test results, my daughter and I were told by a number of doctors that it was impossible for us to have contracted Lyme Disease in within the sate of New Mexico. I found a doctor here in NM that had a lick of common sense and have never been to another doctor. Although more rare, Lyme Disease in New Mexico is still possible. I personally know 5 people in the state of New Mexico that have Lyme Disease and all of them are still battling this disabling condition. I think change really needs to start happening in the medical community. New information about this disease needs to be embraced just as new information about cancer or any other disease would. It still baffles me when I think of all of the controversy surrounding chronic Lyme Disease...hopefully we can all join in and make a difference...

Stephanie said...

Hi Sarah... Please send me an e mail at ...... Our stories are almost identical, with some differences. I also lived in LA and had to return to NY due to Lyme illness. I would like to connect with you about resources, ideas, and other things. Together, an answer is possible!

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