Arms of an Angel.

I have been crying on and off since I heard the news.

It is what we have longed for. . . it’s what we have been working toward.  But hearing it actually happened gives me goosebumps each time I think of it.

Lukah is currently at Canine Partners for Life.  Her training classes started on Oct.11, so she and her dad made the trip across the country to meet her guardian angel, Jasper.

And that is just what he has become.

While they haven’t known each other long, Jasper has already proven his loyalty to her.

Today, just three days after being introduced, he protected my girl from The Beast.

Lukah and her dad were on lunch break during training.  They still had 45 minutes left, so they took Jasper for a walk.  While they were walking, he suddenly stopped. He wouldn’t move . . . not even a budge. Lukah decided to sit down just in case that was his way of “alerting” her to a pass out or a seizure.  Nothing happened, so a few minutes later, she got up again.

Not long after they started walking again, he stopped abruptly again.  Again, she sat down for a few minutes and nothing happened.

She began walking with him yet again and again he started nudging her and also began weaving in and out of her legs.  She noticed it and sat down for a few minutes.  Again, nothing happened.

When they walked again, he weaved in and out of her legs again and nudged her profusely.  This time, her dad noticed it, too.  So she sat down for good this time.

Jasper hovered over her legs like this:

Lukah said he was eating grass, but refused to move to make it easier to do so. He was like a first base man there . . . stretching as far as he could for those blades of grass so he would still be protecting his girl (while also eating grass).  🙂

It wasn’t long after this time she sat down that she went into a seizure.

Jasper laid his head on her legs and stayed with her until it was over.

She wasn’t alone.  She was in the arms (paws) of an angel.

“Angel”

http://youtu.be/ozKsQnRHb-c

Spend all your time waiting
for that second chance
for a break that would make it okay
there’s always some reason
to feel not good enough
and it’s hard at the end of the day
I need some distraction
oh beautiful release
memories seep from my veins
let me be empty
and weightless and maybe
I’ll find some peace tonight

in the arms of the angel
fly away from here
from this dark cold hotel room
and the endlessness that you fear
you are pulled from the wreckage
of your silent reverie
you’re in the arms of the angel
may you find some comfort here

Oh how true those verses are.  I can’t read them without tearing up let alone listening to Sarah McClachlan’s hauntingly beautiful voice sing them.

She has been through so much.  She fears going places in case she has a seizure.  She feels isolation as a prisoner in her own home because The Beast has stolen the normalcy of her teenaged life.  She has never known when The Beast would strike.

Today she did, and she wasn’t alone.

Nor will she ever be again.

She’ll be in the arms of an angel — of her angel . . . Sweet Jasper.

Thanks for reading.

 

Acceptance.

I haven’t written in a while, and it has been intentional.  We got some FABULOUS news that I have been wanting to share, but I haven’t had the right words come to me to share that news.  I’m still not sure I can explain exactly how I feel, but here goes . . .

On the morning of July 24, my husband came home from running an errand to find a message from Canine Partners for Life asking Lukah to call them. Lukah was still sleeping, so he immediately called me.

“Why do you think they called?  Do you think this is it?  Do you think she’s getting a dog?” he asked me.

“I don’t know — have her call them back!” I said.

“Well, she’s sleeping.  Do I wake her up?” he asked.

“YES!  Wake her up! And call me back after she talks to them!” I said.

My mind was racing.  “This has to be it,” I thought to myself.  “They said they would check in about six months into our wait to see how things are going, but it has only been 2 months since we got back.  They wouldn’t call to check in this early.  Or would they?”

My desk phone rang and I practically leapt to answer it when I saw it was my husband calling. “Well?” I said.

“She is still tired and wants to wait to call them until she wakes up later.”

And so we waited.

I went to lunch with my friend and the whole time  I wondered, “Is this it?  Are they calling with good news??”

On my way to my car from the restaurant, I saw I had a voice mail on my cell phone.  It was from Lukah.  She had gotten “the call.”

Canine Partners for Life had called her and they had matched her with a dog!  A black lab named Jasper!  Isn’t he cute?

 

Even better news was that they wanted her to receive him in October — after 3 weeks of team training with him.  That is more than 18 months earlier than expected!

I was so happy, I cried.  And cried.  And cried.  And then I continued to cry some more.

 I had to sit in my car in my work parking lot and cry for 15 minutes before heading back in.  And, once inside, I would sporadically cry at my desk throughout the afternoon.

I cried so much, I started to wonder if these really were tears of happiness?

That night, when talking to my husband, I told him how I had cried and cried and I didn’t know why.  I am so very grateful for Jasper.  So why was I crying?

My husband nailed my feelings exactly when he said, “Well, it made me sad to hear the news, too.  Because it made it real.  It was ‘final.’  She’s so sick that she is getting a service dog.”

I knew instantly that’s why I couldn’t stop crying.

I’ve written on my blog in the post entitled “Forever Potsy” about how I was learning to accept the fact that she will have this for life.  But, I don’t think I had really accepted it though.  Knowing that she will be walking around with a service dog is sealing  the deal — the finality of her diagnosis is becoming real now.  There’s no turning back.

Even two years ago, I never would have thought that my healthy, athletic, smart daughter would become so sick that she would benefit from the help of a service dog.  Fast forward two years, and she does.  I had secretly hoped it wouldn’t come to this — that she would get better and wouldn’t end up needing the dog — but that didn’t happen. I had hoped we would get her disorder under control — that things would calm down, medications would help get her pass outs and seizures under control  and we could change our minds about the service dog.

But they haven’t.  Even today, despite all of the meds she is on, she had another seizure.  And again, my heart is broken, because each seizure takes with it a little piece of my soul.

It took me a while to write about this, because I didn’t want to sound ungrateful.

I am  extremely grateful to Canine Partners for Life for selecting Lukah to be matched with a service dog to watch over her.  And, I am extremely grateful for all that our  community, and several of my friends, are doing to help her get Jasper — there are fundraising efforts left and right.  The support we have received is remarkable. And it warms my heart.

But part of me still grieves what might have been.

It’s like the song “What Might have Been” by Little Texas.

“I try not to think about what might have been
Cause that was then and
We have taken different roads
We can’t go back again
There’s no use giving in
And theres no way to know
What might have been

…………
Yes, they might be the best days we will ever know
But we’ll have to leave them in the past

So try not to think about what might have been
Cause that was then
And we have taken different roads
We can’t go back again
There’s no use giving in
And there’s no way to know
What might have been”

While Jaspers arrival is a blessing, it also solidifes that things will never be the same — that my child’s life is now very different because of Dysautonomia and that all of this awfulness and pain is her “new norm.”

And, while Jasper will do his job well and will watch over her like a guardian angel to get her to safety before she falls, I also am sad because the truth is he is not “the answer.”  He can’t take away the other debilitating symptoms of Dysautonomia.  He can’t stop the near-daily headaches.  Nor can he end her exhaustion.  Her belly aches?  Well, there’s nothing he can do about those, either.

I had hoped and prayed so much for her to be approved to receive a service dog.  And those prayers were answered.  But, I’ve also accepted that Jasper is not the end-all-be-all to this disease.  He is instead, much like a new medication.  He is helping her with a certain symptom — seizures and pass outs specifically.  He can’t take Dysautonomia away.

Unfortunately, Dysautonomia is so much more than just passing out and seizures — the things Jasper will help her with.  Dysautonomia affects almost every “system” in the body and causes so much pain and debilitation. And Jasper can’t do anything about those things. So, she will continue to suffer despite his presence a month from now when she receives him, and perhaps, for the rest of her life.

That’s why I am sad. That’s why I am grieving. That’s what I am, ever so slowly,  still accepting.

Despite acceptance, I also have hope.  And it’s the  little things that add up to perhaps some day making her overall quality of life better . . .   A different doctor who is willing to try new treatments . . . a new medication . . . a service dog . . .

I’ll remain hopefuly and I will always keep “Looking for Lukah.”

God Bless.

 

 

Approved.

“The gift which I am sending you is called a dog, and is in fact the most precious and valuable possession of mankind”
-Theodorus Gaza

April 29, 2014 is the day we found out Lukah will be given just that:  one of “the most precious and valuable possessions” she will ever receive.  She will receive a service dog. This dog will not only give her love and companionship — he or she will give her much of her life back.

As we hopped in the rental car and drove the 30 miles in the hilly Pennsylvania countryside, I was nervous. We have tried drug after drug; treatment after treatment.  Yet, nothing is helping keep her safe from the dangers associated with passing out and or falling to the ground with seizures.  If modern medicine can’t help her, man’s best friend certainly can.  But, will she be approved?

I kept going over in my mind the conversation I had with the Canine Partners for Life representative a few weeks before. “The trainers think she is a strong candidate.”  That’s good right?  “But . . . they want you all to fly out so they can talk with her because she is so young.”  Well that could be good or bad, right?

I was nervous, but I knew they would love my Lukah. And I knew her maturity would shine through.

While she is only 15, Lukah is wise beyond her years. She always has been.  My sister used to say she was even wise as a baby because she was so serious.  She had “wise eyes” her Aunt Stevi would say.  Then, she was wise beyond her years when she began talking at two years old and would use words like, “especially . . . and usually . . .” to start her sentences — and she would use them in the appropriate context!  As a preschooler she was wise beyond her years, too.  While she had a lot of friends in her classroom, often times during playtime, she preferred to sit with the teachers and spend time with them instead of playing with the other children.  Lukah’s “wisdom” has continued throughout her young life but has shined the brightest through her battle with Hurricane Dysautonomia.  Rarely is there a “woe is me” moment from her.  Instead, she says she is glad it is affecting her instead of someone she loves.  She fights her battle day by day, never knowing how she will feel or how her body will react to itself tomorrow or the next day or the next.  She takes it all in stride.  I am grateful that God graced her with the gift of wisdom from an early age.

As the GPS indicated we were “approaching our destination,” chills ran up my spine.  We drove down a long lane to come across two buildings — one was a house, the other looked like a shed.  And then I saw it — the Canine Partners for Life sign.

As we walked to enter the building, I fell in love with this van.  🙂

When we entered “the house” building, we found out it was the office space.  It was set up like a house–with a kitchen, living room, etc.  The bedrooms had been converted to the “office space” and conference rooms, but everything else was very much like a regular house.

The first thing we did was watch a short movie.  It shared information on how Canine Partners for Life was founded, its mission and some success stories of great matches between service dogs and their “masters.”

After the movie, it was time to meet with the trainers for Lukah’s “interview.”  It was a relaxed interview, but still very much an interview.  They asked several questions about our financial background (to make sure we could take on the expense of caring for the dog), and also some questions for Lukah.  Some of them were tough!

“Lukah, you have an invisible illness.  People see you and they don’t necessarily know that you are sick or disabled.  If you get a service dog, people are automatically going to know that there is something different about you.  HOw does that make you feel?”

Wow!  Tough question for anyone . . . but particularly for a 15 year-old.  Or, I should say, MOST 15 year olds. Lukah answered with poise and wisdom.  “Most people in my town already know I am sick to begin with.  And, I don’t care if others who don’t know me know as long as the dog is helping me.”

Amen, sister!

It was funny because during the interview, there were like 4 dogs “working” by just laying there at their owners feet.  It amazed me how calm and “non-distracted” they were by our presence.

After the interview, Lukah was able to work with a few dogs!  The trainers watched her walk with 3 different dogs.  Each dog “led” differently.  The first dog was definitely a leader, and practically PULLED Lukah along.  Another dog was slower and let Lukah take the lead.  And then another one was the happy medium and they both were kind of in-sync and led each other.  The trainers asked Lukah what she felt most comfortable with and it was the one that was in-sync with her. Here she is walking with Rosebud . . . appropriately named because Lukah’s middle name is Rose!

We also toured the kennel.  One of the first things we saw was a small, wide cage with guinea pigs in it!  The trainers use these guinea pigs to train the dogs to not be distracted by small, fast, furry little creatures like rabbits, squirrels or other small dogs like my sweet Sadie.

Next we saw the doggie pads.  Their kennels are huge — lots of room for them.  The dogs live in pairs to keep each other company and they were loving on each other as we walked through.  An interesting thing was, even though we were three strangers walking through their territory, only one dog was barking.  The others sat quietly watching us walk through while wagging their tails.  The trainers explained that the dogs are taught to not be distracted by PEOPLE, also.  So, they quickly learn that if they sit quietly and not bark at strangers as they walk by, they will receive a treat.  Only those who are quiet will get a treat.  Unfortunately, the newbie Labradoodle named Wesley hadn’t quite learned the game yet and barked and jumped as we walked through.  He will learn soon I am sure!  🙂 Isn’t he cute?

Here is a short video showing some of the dogs in their kennels.  Notice the only dog barking is Wesley the Labradoodle.  LOL!

Next they showed us the doggie play areas.  The dogs have a HUGE, fenced-in concrete play area with tons of plastic kids playground equipment for them to climb on.  This area is used for play time  when it is wet and muddy outside. They also have a fenced in grassy area with equipment for them to play on, too.  It was fun to watch them frolic during their “off” time.

After the tour, the trainers gave us the news we have been waiting MONTHS to hear:  “Lukah, we think you are a wonderful candidate for a service dog.  Congratulations.  You are approved!”

Even though tears stung my eyes, my heart was singing!  This dog will not only be her best friend, he or she will be her protector.  He or she will keep her from those harmful injuries she has sustained in her falls. He or she will be her guardian angel.

Although it will take up to two years to actually get the service dog placed with Lukah, it will be worth every second we wait.

Until then . . . we fundraise.

And, keep Looking for Lukah.

Thanks for reading.

Second chances.

Wow it has been a busy few weeks since I’ve blogged.  So many stories to tell and not nearly enough time to tell them, I swear!  Here we go . . .

“Some things are destined to be — it just takes us a couple of tries to get there.”   ― J.R. Ward, Lover Mine

No words could be truer in regards to our recent trip out east.

This trip was significant not only because we were going to see about getting a service dog for Lukah, but it also was significant because it was a second chance . . . a “redo” if you will.

Last year, Lukah was scheduled to go on a high school band trip with her friends to Philadelphia and New York City.  The kids couldn’t wait for their departure in June!

But then The Beast entered her life, and the band trip quickly became the first of many things that have been stolen from her. Because she was having so many seizures, she had to back out of the trip.

I remember feeling so sorry for her as we watched her older sister pack up and go on the trip.  While I was happy for my oldest daughter, my heart ached for Lukah as she watched her sister and all of her friends post pictures and statuses about all of the fun they were having.

I remember hoping that someday, we could take her on a similar trip.

Little did I know that in less than one year’s time, that opportunity would present itself.

While planning our necessary trip to Pennsylvania to meet with Canine Partners for Life about a service dog for Lukah, we realized Cochranville — the small town that the organization is located in — was just about 30 minutes from Philadelphia.  That meant, the little town was also just a few hours away from New York.

It took us all of about 2 seconds to make the decision to “recreate” the band trip that she missed out on while we were out there for our meeting with Canine Partners for Life.

So, on April 26, 2014, Corey, Lukah and I hopped on a plane to Philadelphia with high hopes for a service dog approval on our minds, but also on a mission to make up some “missed out on memories” for Lukah.

Here we are at the airport on our way to Philly.

Let’s board that plane.  But first . . . Let me take a selfie!  🙂

Small plane to ChiTown.

Somewhere over Central, IL.

When we arrived at our hotel, in a town called King of Prussia (funny name, I know!), we were greeted by beautiful flowering trees everywhere! Can you believe I took this picture with my iPhone?  Gosh I love my iPhone camera almost as much as I love my many DSLRs.  🙂

 

Lukah did not feel well from getting motion sickness from being on the MOST turbulent flight we have ever been on, so she stayed back in the room to rest while Corey and I went out to dinner and to get some groceries.  That night, since we were all tired from the day of travel, we just hung out at the hotel.  Here we are in the lobby that evening:

The next day, we explored “The City of Brotherly Love.”  We started out by having lunch at a really cool place called Reading (Pronounced Redding) Terminal Market.  They have every kind of food you could ever imagine.  It is kind of overwhelming, really.  Talk about sensory overload between all of the sights, smells, tastes and touch (from people bumping into us)!

Of course Lukah got her first Philly Steak sandwich.  Only, this one is mine — hers was plain.  I’ve gotta have all of the goodies on mine.  🙂

Here they are cooking them:

Next we toured Independence Hall and got to go in the very room that the Declaration of Independence was signed.  Here’s the room:

We also saw the Liberty Bell.

(blurry pic . . . SORRY!)

And all of the beautiful flowers in front of the Liberty Bell:

It was hard not to feel patriotic on this beautiful day in the City of Brotherly Love! (This flag is outside of Independence Hall)

The next day, we headed into New York City!  I was so excited because I have always wanted to go there.

We had signed up for a “walking tour” and the meeting spot was right next to Wall Street — right by the New York Stock Exchange!

We went to the Federal building.  George Washington took his presidential oath on these grounds on this very stone!

Also, even though the World Trade Center is several blocks away, the building has damage from the fall of the towers.  While repairing the damage, they made the intentional decision to leave a single crack in the wall to be a “tribute” of sorts to those who died in 9-11.

We also toured the most beautiful church I have ever entered.  It is called Trinity Church and it is a gothic looking structure right smack dab in the middle of the skyscrapers!  There is a cemetery on its’ grounds.  Alexander Hamilton, one of our countries founding fathers, is buried there.

From there we walked a few blocks to the 9-11 museum.  It was harrowing to stand on the same grounds where so many had fallen.  The memorial is breathtaking.  Each “pool” is in the exact spot where the towers stood, and are made to be the exact dimensions of the twin towers.  The water falls from individual streams — each representing an individual who lost their life in the tower — into an infinity pool.  The sound was calming and peaceful as I paid my respects.

See the individual streams?

At the 9-11 site, there is a beautiful pear tree called “The Survivor Tree,” and it was in bloom while we were there. It smelled amazing.  If I close my eyes and imagine myself there, I swear I can still smell it. The irony of the sweet smell in a place where there was so much death is beautiful to me and also, a metaphor of hope to me. We have gone through so much darkness and sickness — surely we will someday come out smelling like a rose (or in this case . . . a pear tree :)).

The tree now stands near where it was planted in the 1970’s where it greeted guests in the plaza of the World Trade Center for decades. After the attacks on Sept. 11, 2001, the tree was buried for weeks under the rubble of the Twin Towers.

Amazingly, the tree survived! In October of 2001, the tree was dug out of the rubble– the last living thing pulled from ground zero.

It was moved to temporary “home” during the rebuild.  Ironically, the night before it was set to be moved back to its true home, it was struck by lightning!  Refusing to lose its fight, even though it had been knocked down again, the tree blossomed once it was planted back where it belonged.  That tree reminds me of a metaphor for Lukah.  Even though Hurricane Dysautonomia keeps knocking her down, she does not give up the fight, and continues to grow more beautiful despite her circumstances.

Next we walked to Battery Park.  From there, we took a ferry to the Statue of Liberty.  I will never forget when my eyes say it for the very first time.  I imagined what it was like for my great-grandmother to see that sight, after a long journey on a boat from Lithuania at the age of four, as she started her life in a new country. I remember a story about her — someone handed her a banana and they laughed at her as she bit into it without peeling it.  She had never had a banana before she came to America!

 I can definitely see why Lady Liberty is a monument of freedom to those who immigrated to our country. It took my breath away.

Below is the view up from the terrace.

From Lady Liberty, we took a ferry over to Ellis Island and toured the main building.  It was haunting to think of so many of my ancestors who had walked the same halls many decades ago, eager to being their new life.

After seeing these sights, we hobbled back to our car (our feet were killing us from all of the walking) and headed back to the hotel to prepare for Lukah’s big day the next day!

I am so glad that we were able to recreate this trip for Lukah.  While she didn’t get to see everything she would have on the band trip (i.e. a broadway show, Central Park and Times Square), she did see a lot of the same things. And, some of the things she got to do more of with us than what they did with the band (i.e. we got to go up on the pedestal of the Statue of Liberty and actually got to go inside to the see the Liberty Bell and they didn’t.).

I believe it was fate — or perhaps another God wink — that brought us to a second chance to recreate this trip for our girl.

I am so grateful we could make it happen.  Even though it probably wasn’t as fun for her as it would have been traveling with her friends, we were at least able to partially give back something The Beast stole from her.

Now, if only we could give back the rest of the things The Beast has taken . . .

Until then, we’ll keep Looking for Lukah.

Thanks for reading!

 

Our journey begins . . .

Tomorrow we embark on a journey.  A very important one!

It’s a journey that I never  envisioned going on.

But, when I really think about it,  that’s how a lot of life is — filled with unexpected journeys.

While I didn’t expect to be on this journey, I am relieved and so very grateful that we are taking it.

If you’re still with me, at this point, you’re probably asking, “WHAT JOURNEY? WHAT ARE YOU TALKING ABOUT???”

Tomorrow is the day we fly to Philadelphia in preparation for our meeting next week with Canine Partners for Life regarding a Dysautonomia Service Dog for Lukah!

If you had asked me 18 months ago what I would be doing on a Saturday in late April, I would have answered, “Watching my daughter dominate third base in a high school softball game.”

Fast forward 18 months and that is not happening.

If you had asked me a year ago what I would be doing on a Saturday in late April, I would have answered, “Hopefully watching my daughter dominate third base in a high school softball game.”

Fast forward a year and that is not happening.

If you had asked six months ago what I would be doing on a Saturday in late April, I would have answered, “Well I won’t be watching my daughter play softball.  Instead I will be worrying about her having another seizure or pass out, and praying that iF she does, her guardian angels are watching her to ensure her safety and not another injury.”

Well, that is still happening. 😦

But I’m hoping, after this trip, I will at least see a point in time when I won’t have to worry QUITE as much.

And that will be because she will have someone else watching over her — a  guardian angel. The angel won’t have glorious wings or carry a harp though.  Instead, it will have a glorious shaggy coat and will carry a “Don’t pet me . . . I’m working!” sign as her angel just happens to be a dog!

While I never envisioned things getting to the point that we would be starting this journey, I am so incredibly grateful that this path is there for us to follow.

Obtaining a service dog for Lukah will provide so much more independence for her. Not only will she be able to go on more outings on her own again, it will also bring back her confidence, because right now, she lives a life of daily fear of when she will next pass out or have a seizure.

“Will it happen in front of a stadium-full of people when I go to watch the track meet?  Will it happen when I am at the mall? Oh gosh what if it happens at the One Direction concert this summer?”

Put yourself in her shoes for one day and imagine how crippling the fear of not knowing would be.

This angel will bring back her peace of mind.

While our journey starts tomorrow, we are not on a fast track.

If approved, it will be 1-2 years before she actually gets her furry angel.

But a journey’s gotta start somewhere, right?

So tomorrow, as we board that plane to Philadelphia, I am asking you for a favor.  Please say a say a prayer for our important journey that is beginning. PLease pray that angels will oversee not only our physical journey to the city of Philadelphia and back, but also our metaphorical one — the journey that ends with a furry gaurdian angel in her arms.

And maybe a year from now, if you ask me what I would be doing on a Saturday in late April, I will be able to answer you, “Definitely NOT as worried about my daughter. Hey, in fact, maybe she and I and her guardian angel will go watch a softball game?”

Thanks for reading.

God Bless.

Forever POTSY.

“Her illness won’t go away.  She will have it for life.”

 He said those words at her appointment last Friday, just as he said them to me at her appointment before that in January.  Now matter how many times he says them, they always sting.

“He” is Lukah’s autonomic neurologist, Dr. B, in Chicago.  He said those words when Corey made a casual statement about getting rid of her POTS.  It’s not what I like to hear from Dr. B, but I appreciate him not sugar-coating it and I so appreciate his expert opinion, as I truly believe he is an expert.  There are not many “experts” on autonomic disorders, and I am very grateful to have him as Lukah’s primary POTS doctor only 3 hours away.

There are so few experts, in fact, that most DOCTORS she has seen or I have talked to, have never even heard of POTS.  When she has been hospitalized, we have to educate them!  Here is a funny video that pretty much sums up the life of a Potsy when seeking medical care:

http://www.youtube.com/watch?v=lg7YvKousDM&feature=youtu.be

Back to Dr. B. . .

Ever so slowly, I’m accepting this opinion of Dr. B’s — even though I do not like it.  I know I am accepting it because my goal has drastically changed from this time last year.  It has gone from looking for a CURE for what was going on, to instead, looking for ways to make her more comfortable.  To me, that is a sign showing I have accepted that The Beast will remain.

I  just want her belly aches and vomiting to stop.  I want the blinding headaches to stay away.  The ones that I can tell she has without asking her just by looking in her eyes. I want her to be able to sleep, instead of suffering from insomnia until 5:30 a.m.  I want the urinary tract infections to end. And most of all, I want her passing out/seizure episodes to halt.

What started as seizures and passing out, has turned into so much more than that.  It seems each day we are uncovering a new facet of this dreadful disease.  Another symptom to chalk up to The Beast.  Yet, the seizures and passing out is what I most want to end for her.

And we’re working on just that, with the help of Dr. B.

We had our second visit with Dr. B last Friday. He wanted Lukah to come up so he could do some autonomic testing on her.  Even though she has had this testing before, he wanted to retest so he could watch for himself what her body’s reaction to the testing was. . . instead of relying on past medical records to tell her story.

Prior to the testing, he spent a great deal of time with Lukah, talking about how she had been feeling.  In addition to talking at length about her seizures and fainting spells, she advised him again of her headaches (almost daily) and stomach aches.  She also mentioned strange leg pain that has been happening.  It happens on the back of her thighs and also the back of her knees.  It is very painful, but it isn’t like muscular pain from working out too hard, and it isn’t when she stands up — only when sitting or laying.  He calls it neuropathy, and is yet another complication from POTS.

After spending about 45 minutes with him, we  went into the testing room.  The testing technician placed electrodes on Lukah’s back and she was hooked up to a high-tech blood pressure and heart rate machine that would constantly monitor both fo these.  The first test was a deep breathing test. She had to inhale for 5 seconds and exhale for 5 seconds, and she repeated this 6 times. She got dizzy.  No surprise there!

The next test she did is called the Valsalva maneuver. While still hooked up to the machines above, she had to, this time, exhale into a small syringe that looked kind of like a straw.  She had to keep the air pressure at 40mm for 15 seconds (which is a long time to breathe out into a straw at a high pressure!).   She had to then rest for three minutes and do this 2 more times with a 3 minute rest in-between.  She was dizzy each time.  Shocking, I know!  🙂

Dr. B came in at this point and the testing technician pointed out a few things on those tests and he nodded and said, “Yes, very signficant.”

It was then time for her tilt table test to start. The tilt-table test is an informative test that can help identify the causes of  fainting.  The tilt table test places a patient on a table with a foot-support, and then the table upward. The tilt-table may start off in a horizontal position and be tilted by degrees to a completely vertical position. Lukah’s was tilted at about a 70 degree angle. The patient’s blood pressure, pulse, and symptoms are monitored throughout the test.

Here she is all strapped in and ready to be tilted.

Dr. B stayed in the whole time, watching her body’s reaction.  I would watch him shake his head, ask her if she was doing ok, ask her if she was dizzy, then look at the blood pressure readings and shake his head again.  Here is what he was looking at when he would shake his head.  How smart is he to be able to make sense out of this screen???

 Lukah did not pass out this time (she did on one of her prior tilt table tests) but had markedly positive results indicating orthostatic intolerance and increase of heart rate indicative of POTS.

So tell me something new, right?   🙂

Dr. B told us she has the blood pressure of a 65-year-old.  To that, Lukah exclaimed, “But I’m only 15!!”

Through this round of testing, Dr. B was able to identify what types of medication he feels will best help Lukah based on how her body reacted to the testing.

In my last post, I talked about how many medications she was on.  Dr. B has now opted to change-up her medications, which will reduce the amount she has to take by 2.  She will now be on a drug that is actually usually prescribed for ADHD called Tenex.  It can help with POTS as it is known to constrict blood vessels.

He also has prescribed a drug that is not available in the USA called Ivabradine.  For some reason, it is available in just about every country besides the United States.  Lukah’s heart rate is always high (yesterday, while just sitting on the couch, her resting heart rate was 118).  The ivabradine actually reduces the heart rate instead of working like other heart medications to reduce or increase the blood pressure.  I will be working with a pharmacy in Canada to obtain this drug.

She also was given another heart drug called midodrine.  For many “potsies,” this is a miracle drug.  I’m hoping for the best.

So, with Dr. B’s help, we are tackling her first symptom — and her most debilitating one . . . her seizures and passing out episodes.  But we have many more to conquer.  Dr. B knows that, and mentioned bringing other doctors in to the mix (a urologist for example, to help with the frequent urinary tract infections).

While we may bring others into the mix,  Dr. B will remain her “chief” as I respect him completely and am so grateful he has shown such kind and caring interest in her case.  With him, we will figure this out.

While it may never “go away,” at least with Dr. B’s help, perhaps someday will keep The Beast at bay.  And we’ll always keep Looking for Lukah.

Thanks for reading.

You know your daughter has POTS when . . .

I’ve been told by some that they think my posts are sad — that they make them cry.  Please know that is not my intention.  My goal is to raise awareness about Dysautonomia/POTS — not to make you sad.  But the truth is,
POTS/ Dysautonomia IS sad in many, many ways.  So, while Lukah’s story may be sad, we’re also raising awareness about a rare disease and to me, that’s worth every tear that’s been shed while her story is heard.

On a lighter note, today, I thought I’d create a slightly- silly- but- completely- truthful- post called “You know your daughter has POTS when . . . “

Enjoy!

You know your daughter has POTS when . . .

1. Instead of asking her how her day was, your preferred greeting to her when you get home from work is “How do you feel today?” because you don’t want to know the answer to how her day was (because the good days are so few and far between.).

2.  For Christmas, one of her “gifts” was a 4 slotted weekly medication holder so she can better keep track of her medication times.

3. You’re so used to the sound her body makes when dropping to the ground during a seizure that you race to the room she is in when you hear even the softest thud. I don’t know how many times I have annoyed her with this one. She will drop a book or something and I am like a mad ninja checking on her within one second of the noise. If I am lucky, I will be greeted by a slight eye roll and comment like, “What? I just dropped a book ? “

4. Her typical water glass is the “Bubba Keg” that was purchased for our trip to the all inclusive resort in Mexico (so we didn’t have to ask for refills every two seconds since they use tiny plastic cups for beverages there).
It holds 52 ounces. She refills it three times a day.

5.  As you head out the door to the ER, you automatically grab a pillow and blanket because you know you will be sleeping on the couch in the room once she is admitted and you already know that room is  freezing.

6.You carry a medication list card in your wallet so you have it on hand for medical appointments because there are so many medications she is on you are afraid you will give incorrect information  (but you actually have the card memorized — it’s a “just to be safe” card in case you have a brain fart while filling out the paperwork.).

7.  You change batteries in the blood pressure/heart rate monitor nearly as often as you change your clothes.

8. You can glance at her and know she has a headache without even having to ask her just by looking in her eyes.

9.  Instead of a blizzard from DQ, her after dinner treat is a smoothie . . . with more than half of it being made from green veggies.

10. At the age of 15, she is on more medications than a ninety year old.

Artwork I made from the meds she takes in ONE day:

11.  You have educated many people on your child’s rare disease — including Doctors and Nurses — because they have never heard of it and don’t know how to treat it.

12. This is what you doodle while on a conference call:

13. And most importantly, despite the lack of progress being made to improve her quality of life, you never lose hope that someday there will be a cure, and things will go back to how they once were.

 Thanks for reading!

Here comes the sun.

This morning, as I walked into the building of my work, I saw the beautiful yellow sun peeking out of some dismal grey clouds.  It was a lovely display– I almost took a picture of it for instagram but didn’t have a clear shot.  For some reason, this not only caught my eye — it spoke to me as a message of hope.

As I looked at God’s beauty before me, I had a strong feeling of peace overcome me.

God’s work of art quickly became a metaphor for my soul.

You see, it has been a long hard winter here in Illinois.  We experienced record breaking temperatures and record breaking snowfall during numerous winter storms.  We are all ready for

.

But, it also has been a long hard winter in my heart.  This is the first winter we have been battling dysautonomia, and, I am sad to say, it has frozen my heart a little, as I have never experienced anything like it.

This winter, my daughter went on homebound school through the district.  Since the New Year, she has experienced more than 25 pass outs/seizures (that is not counting the time in the hospital when she couldn’t sit up without passing out.  If I counted those — it would be more than 50!).  She has battled near constant headaches, frequent stomach aches, digestive problems and complete exhaustion.  She has weathered the storms of insomnia (up until 4 a.m.) at least once a week.  Her heart has raced, dizziness has prevailed and her pupils have been randomly enlarged, yet she has weathered Winter Storm Dysautonomia without complaining.

I asked her the other day why she didn’t ever complain.  She said, “There is nothing that I can do about it so what is complaining going to do?  I am just glad it affects me instead of someone that I care about.”

A lump rose in my throat.

I said to her, “I wish I could take it for you.”

Her response?  “Stop it mom.”

She hates it when I say that, but it is true. Most mothers would agree with me — they would rather suffer than watch their sweet children suffer.  Someday, when Lukah has children, she will understand.

Back to the sun . . .

So hopefully you can understand why my heart has frozen a bit this winter.  There is nothing like watching your child suffer.  It changes you.

I have been reading a book loaned to me by a good friend.  It is called “When God winks at You.” 

It is a compilation of stories explaining how God speaks directly to us through the power of coincidence. It is amazing.  The author, SQuire Rushnell calls these coincidences “Godwinks.”

I had been asking God for a “wink” lately — for a sign that things were going to get better.  For a sign that we would see improvements in Lukah’s quality of life and that the ice in my heart would eventually thaw.

I had been asking for a sign that we would see the sun.

I believe today, I got that sign.

I realized what that feeling of hopeful peace that I felt this morning was when I received 2 phone calls today  — one of them particularly special.

Faithful readers of my blog will recall that we had recently sent in an application to Canine Partners for Life for Lukah to receive a service dog.  We have been anxiously waiting several weeks to hear from them after they reviewed her application materials.

Today, they called.  They think Lukah is an excellent applicant and want to meet her!  Since Lukah is so young, they want to meet her in person rather than via skype or phone call.
So, Corey, Lukah and I will soon be hopping a plane to Pennsylvania to meet with the trainers regarding a dog trained specifically for her needs.

Coincidentally, the representative I have been working with from Canine Partners for Life has the same last name — Case.  Even more of a coincidence is the fact that she also suffers from POTS and has a
service dog of her own.

Ms. Case explained to me how her service dog has made her quality of life so much better.  She had to drop out of college because of her passing out issues from POTS, and, because of her dog, she was able to finish college and is working full time (for Canine Partners for Life!).

Ms. Case’s dog alerts her to when she is going to pass out.  She said all dogs alert differently, but hers stares at her intently (she said it is almost creepy how he stares lol), and if she misses that stare then he persistently nudges her leg.  She lays down, so she doesn’t end up passing out. Then, he alerts her when it is safe for her to get back up.  So, she completely avoids the passing out to begin with.  She said he is absolutely amazing and that she hasn’t passed out since she got him.

I can’t imagine what the improvement in Lukah’s quality of life will be when she gets her dog. Notice I say, “When” and not “If.” 🙂

In addition to that phone call, we also heard from Dr. B — her autonomic neurologist in Chicago.  He has decided to wean her off of her POTS medications and do some autonomic testing of his own.  So, we will be heading to Chicago on April 11 for him to conduct tests.  His nurse tells me he is very meticulous and exact with them and the very best.  After the testing, he will put her back on the meds that he feels she needs based on her results. His nurse assures me he will figure this out.

Today, this first day of Spring 2014, has been filled with Godwinks for me.

The minute I felt that peace while looking at the beautiful yellow sun peeking out of those dismal grey clouds, I knew it was a metaphor . . . a Godwink if you will . . . telling me that today was the day I would have hope restored.

Is it a coincidence that the service dog representative I talked to shares the same surname AND the same disease that Lukah does?  I think not!  I, instead, prefer to think of it as Godwink.

That Spring sunshine has melted the Illinois ice outside on the lakes, and also inside of my heart.

Those Godwinks today . . . that feeling of peace, those phone calls, the last name and same disease coincidences make me feel as if He were singing straight from one of my favorite songs by The Beatles,

“Here comes the Sun” :

“Little darling, it’s been a long cold lonely winter Little darling, it feels like years since it’s been here
Here comes the sun, here comes the sun And I say it’s all right.”

I can feel in my heart that things are only going to get better from here.

God Bless.

 

One year.

A year ago, March 10, 2013, at about this time, I went to bed not knowing how my life would change the next day.

March 11, 2013 was typical. I went to work; had a decent day; carried about as I usually do. I came home and cooked dinner for the kids and spent the evening in my “norm” of editing photos. I was doing just that when I heard the sound I have come all too familar with — the thud, followed by the dog barking . . . and barking . . . and barking. As I ran into the kitchen to see what was going on, Sadie met me halfway with a look of protectiveness in her eyes, telling me to get in there and make things right.

But when I got in there, I couldn’t.

You see, Lukah was under the control of The Beast — for the very first time. She had passed out several times before in her life but I had never seen anything like what happened to her that night as she had her first seizure. I will carry the visual with me always, and it makes me shudder when I think about it.

Little did I know, it would happen again and again and again.  A year ago, I had no idea that the longest she would go without experiencing a seizure from that point on would be 17 days (and that was early on. Realistically speaking, it is more like the longest she goes is a week now).

March 11, 2013 changed our lives forever.

Little did we know that with that first seizure, our journey would begin, and our lives would never be the same.

On March 11, 2013, I knew what I witnessed was the most terrible thing I had seen happen. But what I didn’t know was that I would continue to witness it, on average, 3 of these episodes per week for the next year. I didn’t know she would have three hospital stays in less than a year, see countless specialists, miss more than 40 days of school each semester — eventually ending up on “homebound” school.  I didn’t know that she would have to cancel her band trip to New York, or that I would have to fight for her care through 3 misdiagnosis’s. I didn’t know that I would spend the next year searching for answers as doctor after doctor, specialist after specialist, cast her away.

I didn’t know that I would hear that what she has is genetic and that it won’t go away.

I didn’t know that I would cry so much that I would eventually become numb to the fear. I also didn’t know that I would eventually overcome the numbness and start fighting again.

I didn’t know any of these things just as my friend from work did not know that she would die this past weekend. She was one of my favorite rare disease heros. She had a similar story to Lukah in that she became ill and searched for answers before hearing an answer she didn’t want to hear. She was diagnosed with Wegener’s  disease last fall. She fought quite a battle through many surgeries, drugs that made her physcial appearance change (due to swelling in her face), loss of her hearing and the most difficulty in breathing that I have ever heard. Yet, she put on her good attitude and came to work, making it a better place every day she was there. We talked a lot about what she was going through and what Lukah was going through. We related well to each others situations.

She died on Sunday, unexpectedly.

And it breaks my heart.

While I could be “woe is me” about it having been a year of unknowns, instead I will be positive, like my friend at work would be, in looking toward Lukah’s future . . . in searching towards more answers.

And I will be grateful for this past year, as it has taught me more than I ever could have imagined.

I am stronger than  I was a year ago, though I am not a warrior.

The warrior spots are reserved for those actually suffering from rare diseases: Lukah and all of the others . . . especially my friend who lost her battle yesterday.

It is in her honor, that on this anniversary eve, I make my pledge to always continue “Looking for Lukah.”

God Bless.

Rare Disease Day

Tomorrow is National Rare Disease day.

While I have participated in supporting Rare Disease Days of the past, this is the first year I am directly impacted by it.

I always knew Lukah was a rare gem, but I sure as heck never thought she had a rare disease! That changed forever on October 24, 2013 when she was diagnosed with Dysautonomia/Pots
(another date I will never forget . . . see earlier post entitled Dates.)

So what’s the big deal about being rare? Everyone is unique in some way, right?

Well I’m here to tell you that “ain’t nobody” want to be the “rare disease” kind of unique. Having a rare disease is not like having a split in your teeth like Madonna, or being skilled in a special talent like glass blowing. Instead, the thing that makes someone “rare” is usually the fact that they are fighting the hardest battle of their lives . . . and very often times battling FOR their lives.

You see, many times the symptoms of rare diseases are uncommon to most doctors, so rare diseases as a whole represent a large medical challenge. We have found this to be very true with Lukah. It took us 7 months to even get a diagnosis for her disorder, despite having seen more doctors than I can remember to count.

There also is not a lot of funding for treatments for rare diseases. Consider this: What would give you more bang for your buck? Getting three “new without tag” designer purses at a trendy resale store or paying store price for one designer purse from Saks 5th Avenue? The same is true for rare disease research and treatment development. Looking at it from a strictly monetary perspective only, does it make more sense to sink a lot of money into curing a single rare disease that will cure a small amount of people (like Dysautonomia), or to fund research for something that will find a cure for the masses . . . like cancer. It’s sad but true.

“More people are affected with a rare disease than with cancer and AIDS combined, yet we get no funding,” said Patty Weltin in an article entitled “Health Check: Rare Disease Day”
on the website www.turnto10.com “None.”

Did you know . . .
• There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day. The type of rare disease my daughter has is called POTS and it was just classified 20 years ago.

• 30 million people in the US are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population. I personally know two other people with rare diseases – one young angel child with Batten disease in my little town and then at work I have a friend who is battling Wergner’s disease. Do you know anyone battling a rare disease? I’ll bet you do — you just might not know they have one!

• In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if fewer than 50,000 citizens per disease.

• 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear. This is the case with Lukah. Her neurologist believes her condition to be genetic, even though she did not show her first symptom until the age of 8. Then, after that, it was dormant again for a few more years until junior high when she would pass out about once a year. Then, came March 14, 2013 and she hasn’t had a break since. He does not believe she will “grow out of it” since he thinks it is genetic.

What can you do to help?
While people with rare diseases are unique, they do not bite (usually that is lol!). If you know someone who has a rare disease, don’t shy away from them because of their disease – especially if the disease made its grand entrance after you already knew them. Better yet, get to know them better! They probably need someone to talk to. If you’re comfortable, ask them questions about their disease. Raising awareness for rare diseases is important and by asking questions you are becoming more aware.

Walk a mile in their shoes. Imagine what it is like to never know when another seizure is going to strike, or not being able to breathe without a wheezing exhale with each breath or having your hearing stolen from the awful disease. Don’t be annoyed at them for “disrupting class” with a seizure or talking too loud at work because they can’t hear very well anymore. Be empathetic.

While this is not the case for Lukah, often times, people with rare diseases look “different. Don’t stare at them, but also, don’t shy away from looking at them in a friendly way, either. Often times, they feel isolated so a friendly smile will do wonders for their spirit.

Don’t judge. While a constant battle, those with rare diseases often times have good days and bad days. If you see them out and about, don’t automatically think snarky “Well see she’s not so sick after all” thoughts. Instead, be happy for them that it is a good day and they were able to leave their bed that day, because often times, those good days are few and far between.

Wear jeans tomorrow. The Wear That You Care™ campaign is simple — all across the world people can participate in supporting the Global Genes movement and rare and genetic disease awareness by wearing a Genes Ribbon™ and their favorite pair of jeans in support of those suffering from rare diseases. Why? The more awareness we build the more attention rare diseases will receive which leads to the possibility of additional funding.

Consider making a donation to the rare disease organization of your choice. If you’re interested in donating to a good one that supports the disease my daughter suffers from, Dysautonomia, please consider donating to Dysautonomia International through www.dysautonomiainternational.org.

Thanks for reading and God bless!