Stacey’s Story - living with a Dysautonomia Disorder

Stacey’s Story - living with a Dysautonomia Disorder

“The body can take a lot but the mind is stronger," Stacey.

Before Stacy was diagnosed with Dysautonomia Disorder, she spent her time doing things like many of us in our forties.  She loved her job, traveling to the beach, cooking, working out, driving, photography and most of all her independence.  “My mind wants to do these things but my body says, I don’t think so...not today!”

We all dream about finding that special someone to share our lives with, to find that piece of our heart that has always felt missing.  It is glorious, heady, and simply amazing. 

Meet one of DiaNoche’s artists, Patti Schermerhorn, who has found just that.  Patti found Stacey, who filled that empty corner of her heart and left her breathless, thankful, and so in love.  So, you might think that is the end of the story.  Case closed.  Happily ever after, right?

But life, as we all well know, is not always so straightforward, or so kind.  One moment can change everything.  And, in that moment, Stacey lost consciousness, and her body crashed to the floor.  It was not an isolated incident, and happened over, and over again.  After countless trips to the ER to treat contusions, lacerations, and broken bones, and endless visits to medical specialists, it was finally discovered Patti’s partner, Stacey, suffered from Dysautonomia.  

 Happy Couple

Never heard of it?  Neither had we.  Yet 70 million people worldwide live each day with a form of Dysautonomia.   70 million people!  It is a blanket term that describes a maelstrom of medical conditions that affect the Autonomic Nervous System.  Our Autonomic Nervous System is a very complex network within us that controls all of the wonderful things we take for granted every day:  blood pressure, heart rate, kidney function, digesting our food, body temperature and so much more.  Can you imagine these bodily functions that are as normal as breathing suddenly going haywire?  The effects are overwhelming physically, mentally and emotionally. 

DiaNoche Design’s mission is to create awareness of this debilitating disease and gain support for Stacey in creating a better quality of life.  This campaign will raise money for medical care and a safer place for her to live.  Please listen with your head and your heart, and remember, a percentage of all sales from DiaNoche will go to Stacey from October 16-28.  Start your Christmas shopping today and do some good, all at the same time. 

Patti and Stacey opened up to us in a candid interview shared here:

How does this disease effect you and in your day to day life? 

Stacey:  “My illness is a disease that falls under a Dysautonomia Disorder. In a nutshell, my autoimmune system is attacking itself and it is focused on my vascular system. Upon any change in movement, my blood pressure drops and my heart races. Imagine going for a 1 mile run. That’s what my heart rate does when I stand up. It exhausts me. It also causes me to pass out. A lot!

Since this began, I have passed out 823 times. That wouldn’t be so bad if I just swooned into someone’s arms. However, I typically get no warning signs whatsoever. I have passed out more times than I can count down our stairs, in the shower and face planted on our tile floors.

We were going to the ER so often that we actually knew the nursing staff by name. I’ve been temporarily paralyzed on numerous occasions from my falls, I’ve dislocated my shoulder 7 times, broken 3 ribs, have had more concussions than an NFL quarterback, I’ve had contusions, cuts, gashes, broken my foot.....all of this as a result from my syncopal episodes. (Syncopal...big word for passing out)

This lovely disease also causes other issues.  I run a gambit of a vicious circle between migraines and diarrhea that lasts for weeks.  I had to have a port placed in my chest so that I can saline fluids 3 x’s weekly because I get extremely dehydrated.  Which, of course, causes me to pass out.

I have seizures when I pass out. Not all the time but enough.

I can’t be left alone. So Patti and I spend WAY too much time together but she’s been a saving grace and an amazing, patient and a loving advocate for my care.

I can no longer drive and my freedom feels very pulled away from me.  As does the ability to just have alone time.” 

 Stacey Camera

Patti:  “The toughest day was the first day in the ER. It was actually my 50th birthday. We had a beautiful day. Stacey had just been baptized. We were upstairs packing to leave to a dear friend’s beach house the following day. Suddenly, I heard a loud thud. Stacey had fallen backwards and hit the back of her neck and head on the toilet. She couldn’t speak, couldn’t move. She was paralyzed. Tears were just rolling out of her eyes and she looked so scared.  I, of course, called 911.  As I was sitting in the ER with her parents, I recall her dad leaning over and saying to me, “Prepare yourself Patricia”.  He meant, of course, in case she was paralyzed and what it would bring and how our life would change.  She spent the next two days in the hospital and actually left walking. The day of my birthday, I received a much desired gift, an iPad, every morning since then....992 days of entries...I have notated every symptom, hypothesis, doctor visit, fall, pass out, medication.  I prepared myself alright.  We have had more near death, scary, very personal moments between us than I would have ever dreamed possible.  Every time she passes out and goes unconscious, I hold my breath fearing that she won’t wake up. Those are the challenging moments.”

Stacey and Patti, how have you managed to work together, live together, and help each other through this?

Stacey:  “Even though it is difficult spending 24/7 with someone and frustrations can run high, it can make individuals and couples stronger. When one part of the team becomes caregiver and one becomes patient, you have to learn to adapt to different emotions and attitudes of each other and accept that your relationship will obviously change.

We got lucky....ours got stronger.”

Has Patti’s art had an impact on your illness, lives, etc.?

Stacey:  “Patti’s has her own little studio in our home.  Since I’ve been ill, she hasn’t been able to dedicate as much time in there as she normally did. This is more for her own artful soul, though, than for any other purpose.  She has also taught me to paint and now I understand why it calms her spirit so much. Plus, we have colorful, happy art surrounding us all the time and cats who like to get into her paints with colorful paws....that part is not fun but it is funny!”

Patti Studio

What sacrifices have you made for each other due to this illness?

Stacey:  “I think that you give up living two separate lives to live one life and you have to sacrifice what you may “want” to do in the moment for the other person’s needs or desires.  And although we are totally two, strong individuals we have to truly “give” from the heart and a lot of that falls into actions such as patience and timing and listening to each other’s needs as opposed to our own. Because we spend all of our time together, personal space is very difficult, so it is important for the two of us to respect that personal space.

We’ve had to sacrifice a lot of that (personal “I want to do’s) due to my illness.”

What will the money from this Fundraiser go towards?

Stacey:  “Because I had to resign from my position and apply for disability, my income has been cut by 75%. I do not allow Patti to pay for my health care benefits, my prescriptions, my expenses, including medical, this is a matter of pride and principle. As a result, this money will go towards my medical fund. My deductible and coinsurance alone, for example, runs upwards of 6000.00 a year and starts anew in January and I am still paying bills from this year. That does not include my monthly premiums, or prescriptions, which run me upwards of 700.00 a month. This also does not include other expenses planned for or otherwise. I am not able to save much money and I do not know if or when I will be able to work or how long my disability be in effect.

It would be nice to have some financial stability for the near future. My financial health is as unstable as my physical health. I appreciate this fund raiser more than words can express. It is one positive in my life at this time. I am grateful to everyone who will participate.”

How will this money help with your lives, quality of life, etc.?

Patti:  “This is all about Stacey, not me. So me...Patti....I’m going to fill in this question. Stacey lives a lot in her head. She’s a thinker and oh my goodness is she smart! I think I first fell in love with her mind and words before anything else.  Because she’s such a thinker, she over processes and she over-thinks her finances and worries and stresses. Stress causes her to pass out (it’s a trigger) and this has been a conversation we have had over and over on a behavior to modify.

This would impact Stacey’s quality of life because she wouldn’t be so worried about how she is going to pay her medical bills. She truly is a proud gal. It took a lot of prodding to convince her that a fundraiser was a good thing and to just allow people to reach out and help her. A short term goal for us, is that this gift of money will alleviate stress from Stacey’s medical expenses.  The worst thing someone can tell you is no and the best thing they will tell you is yes!  My mom taught me this and it has served me well.  So, have courage.  Whether it’s a gallery, a show, a venue or just life”.

Patti confides during the interview, that one of their big long term goals would be to work together, growing their savings so they can buy their own home—a refuge in a crazy world that is safe and secure for Stacey, cozy and comfy for Patti, with lots of quiet corners for endless naps for their brood of pets.  After a pause, she shares this with us:

“I don’t know where or what the question would be to this....but I did have something else to say....

As Stacey’s life partner and best friend and the person who spends 24/7 with her, the toughest thing is watching someone you love go through a roller coaster of emotions that this disease/disorder has brought into her world. 

Stacey Patti Beach

She is truly a loving, compassionate, talented, caring individual and so full of life. Watching that get squashed by this autoimmune disease has just been heart-wrenching. I’m a “fixer” and I can’t fix this. So, here’s something else people would be surprised to learn about me.....through all of this....I now wish I had become a doctor. Because that’s what you do right? You read, learn, talk, research. The dysfunctional aspects that fall under a Dysautonomia Disorder are awful. They are confusing, evolving and ever changing. Stacey confused even the best of doctors until we finally saw a wonderful specialist at the University Health System.

She has Stacey on a new “cocktail” of medications that have helped lessen the frequency of her syncopal episodes -- a Godsend for us both.  But then when she does pass out, this heavy weight just hits us both. But sadly we still haven’t found the right “cocktail” for the other persistent symptoms.”

It has been a privilege and a pleasure to get to know these two warm, lovely people. The love and support that flows between them is beyond humbling.  We would be so honored if you would support them in their quest to provide the most basic of needs to this family—safety.   

Patti:  “We are sharing Stacey’s story because we want to bring awareness to Dysautonomia and the life changing effects it has on all the patients, families, friends and co-workers. We both thank you from the bottom of our hearts for your support and for reading this and for caring.”

Have courage indeed. 

Here's how you can help and recieve a beautiful reward at the same time with our GoFundMe Campaign.

PS, just a reminder that a percentage of all sales from DiaNoche will go to Stacey’s medical care/expenses from October 16-28, 2015.  Never has shopping felt so good!

Patti Schermerhorn Art