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.