Visible Hope: How One Celeb Filled Glam Night Out Brought Me Visible Hope

Karina Smirnoff (Dancing with the Stars), Queenie Barb (wife, mom, and chronically ill) , and Quinton Aaron (The Blind Side) just, ya know, hanging out on a Thursday

Last night, Lupus LA held their 4th Annual Get Lucky for Lupus LA Celebrity Poker Tournament Fundraiser.  So, what does that have to do with me?  Well, I happened to come across a Groupon a couple of days before to attend the celebrity filled event.  The first thing that popped in my head was "Cool!  Getting dressed up, hob nobbing with celebs, food, drinks, and fantastic people watching for a great cause...I'm in!"

Then the doubts flooded in.  It's too far away.  It's a school/work night.  What if you can't handle the drive?  What if you pass out while your there?  What if something happens to your son...or the dog?  You don't even have lupus.  Why would you make such an effort to get out when it's so hard?  What would you wear? How are you going to convince the hubby to go?  And that's just the top Top 10 list.  Two days!  I spent two days analyzing, re-analyzing, and questioning myself about grabbing that ticket and just going for it.  I couldn't understand why I wouldn't just let it go and give up.  I mean, who would know differently, and who really cares anyway? Then, it hit me like a bright ray of light...I would know.  And I care.

I have tested myself to push beyond my perceived limits most of my life.  When others tell me no, I take it as a personal challenge to prove otherwise.  Pushing for an accurate diagnosis and effective treatment is a prime example of this will to overcome what others tell me can't be done. But there's other ways I've pressed beyond the likely and probable to achieve more than is expected and push beyond the limitations that are now firmly planted in my body.  I completed the LA Marathon in the down pouring frigid rain last year, alone.  I modeled for a girlfriend's jewelry line in Hollywood.  I flash mobbed for some very worthy causes. All while ill with dysautonomia and autoimmune disease.  I've pushed hard at key moments in my journey with my illnesses.  Why?  Why do I do it?!?  Because it brings me hope.

Every time an idea or opportunity comes up that most would normally blow off, or think is too hard, or impossible, I look deep down inside and think "maybe...just try," and the fever to accomplish and overcome is relit brighter than ever and hope firmly sets place once again deep inside me.  It's how I get through the overwhelming challenges that I've stumbled into these last several years without completely losing my mind. Hope challenges me every time to face the often loud obnoxious voice in my head that tells me "no," "impossible," "it's a waste of time," "why?!" and replaces it with a softer, but just as firm reply of "yes," "possible," "you can do it!"  Hope.  It's what I thought I was losing this summer while I suffered a decline as my son was battling seizures and seeking an accurate epilepsy diagnosis.  The inner voice of defeat was so strong this summer, but hope was stronger. Hope means the story is not over, and what seems unlikely or unrealistic or insurmountable can be achieved. 

So as the clock ticked down to decision time, I gave into hope instead of doubt and fear and judgement, and bought the tickets for that event.  And you know what...my patient and handsome hubby and I got dressed up, drove too far out of our way, stood on my feet way too long, talked to people we didn't know to support a cause that doesn't effect us...and had a fabulous celeb filled date night out!  I'm still glowing and am always grateful for every day that I have hope!

So this is what visible hope looks like to me...

LA Marathon 2011- Year 2 of my Health Hell Journey

Flash Mobbing for Buddy Holly's Hollywood Star Ceremony- Year 2

My stab at modeling in my 40's- Year 2

The Queenie & Gilles Marini (Dancing with the Stars)-Year 3

Oh yeah, and there was Lou Diamond Phillips

My Hero, My Husband Paul

Diagnose Me...Maybe?!?!

Blogging for Invisible Illness Awareness Week continues and I'm  in a super silly mood.  The road to diagnosis is irritating, long and redundant, kinda like that Carly Rae Jepsen song, "Call Me, Maybe". I got inspired to swap the lyrics out of the song, but I'll spare you the horror that is my singing voice.  Dedicated to anyone that's struggled or fighting to find an accurate diagnosis, I give you "Diagnose Me...Maybe?!?"  Feel free to share and belt it out loud at your next doctor appointment!

I threw a wish in the well,

Just ask me, I'm happy to tell,

Truth is I feel like hell,

And you're my specialist to-day! 

I'd trade my soul for my wish,

Medical bills and still no hint,

I wasn't looking for this,

But you're my doctor to-day.

You're looking bored and rushin',

I 'm dizzy and I 'm flushin',

Hot sweats, mind is foggin',

Where you think you're going, anyway?!

Hey, I just met you,

And this is crazy,

But here's my symptoms,

So diagnose me, maybe?

It's hard to sit up,

Can't speak clearly lately,

But these are my symptoms,

So diagnose me, maybe?

Hey, I just met you,

And this is crazy,

But you're my specialist,

So can't you diagnose me, maybe?

You didn't take your time here at all,

I said it takes no time then I fall,

You can't think of nothing at all?!?
But you still need my co-pay.

I beg, I moan and I squeal,

Can't you help me, this is real!

I told you exactly what I feel,

Can't you consult with a peer any-way?

Your stare was glazin',

And you were awkward pacin',

Crap, now my heart is racin',

Where ya think you're goin' anyway?! 

HEY! I just met you,

And this is crazy,

But these are my symptoms,

So diagnose me, maybe?

I've already seen like

14 doc-tors lately,

But these symptoms are sucky,

So diagnose me, maybe?

Hey, I just me you,

And no I'm not crazy,

But you're the specialist,

So diagnose me, maybe?

And all the other docs

Try to placate me,

But here's my symptoms,
Can't you Google this s@&t, maybe??!?

A Thank You Note For My Guys...

I am beyond fortunate to live with two of the best supporters in the world, my husband and my son...my guys!  Day in and day out, they have both been the ones to witness and react to the ever changing and often scary effects that my illnesses inflict on my body. It's hardly a week that goes by without my husband having to work from home, call in sick, or try to figure out on the fly if this is now the moment where we once again trot off to the ER for a pointless round of "gee we don't know what to do for her."  My son has urgently brought me gatorades and salt shakers, without being asked, just because he's seen the scenario of my rapid declines into syncope over and over and over again.  No matter how hard I try to rally, my body and these illnesses remind me that I am no longer in control and free will is not so free anymore.  Even the beagle, my unofficial third guy, has watched me with a look of concern more times than I can count over the last several years, laying his head down by my hands when we're alone to let me know he's on guard.  These guys are my day to day support system, they are my lifeline, and they are the main reason I carry hope so strongly.  I want to have better days not just for myself, but for them as well...they deserve every inch of fight I have within me.

I thank them daily, but given that it's Invisible Illness Awareness Week, I thought now would be the perfect time to thank them publicly.  You see, their roles are invisible too. They are part of the silent army of caretakers that help take on extra duties and expanded roles to help the ones they love get through the hardest of days.  It is a very difficult position to be in to watch someone you love suffer or struggle and not know exactly what to do to fix it, rolling with the punches one day at a time, moment by moment.  So for my guys, this note is for you....
 My Dearest Guys~

Two simple words that carry the entire meaning in my heart: thank you!  Thank you for working extra hard at school and at work.  Thank you for carrying me into my bed when I pass out in the car over and over and over again.  Thank you for making dinner, for picking up prescriptions, for helping me keep our home tidy.  Thank you for not judging me when I can't seem to get out of bed.  Thank you for loving me, when I seem a shell of my former self.  Thank you for inspiring me to want to fight my physical battles each and every day.  Thank you for holding me when I can't seem to stop crying.  Thank you for making me laugh and smile, on the good days and the bad. Thank you for all you sacrifice each and every day for the sake of our lil family.  Thank you for not blaming me for all that my illnesses have taken away from us.  And thank you...thank you from the bottom of my soul for waking up each morning with hope in your hearts knowing that nothing lasts forever and every day is a blessing because we have each other.

I love you always~
Your Queenie



Today marks the 11th anniversary of 9/11 and I just wanted to tell my guys thank you. Today is a blessing, and so are they! 

Invisible Illness Awareness Week: 30 ThingsAbout My Invisible Illness You May Not Know

 

Today kicks off Invisible Illness Awareness Week at invisibleillnessweek.com, a time to come together as a chronically ill online community to help raise awareness for the plethora of invisible illnesses and conditions that plague so many of us these days.  I've been a particularly vocal communicator of my battle and journey with my growing list of chronic conditions, but so many others suffer in silence feeling the harsh isolation, loneliness, and utter helplessness that accompanies the majority of invisible illnesses.  So, to all of those who suffer silently, or speak vocally, to all those who just don't know or understand exactly how invisible illness affects a person and their family and friends, this week is dedicated to you!  To kick it off, here's 30 things you may not know about my invisible illness...

1. The illness I live with is: NCS (Neurally Mediated Syncope,)  Hyperadrenergenic POTS (Postural Orthostatic Tachycardia Syndrome), Hashimoto's Disease, Psoriasis, Surgical Menopause (ok, that's not an illness, it's just feels like one sometimes), and now MCAS (Mast Cell Activation Syndrome)

2. I was diagnosed with it in the year: Well, it's been a cascading effect, with every year bringing on more and more diagnosed conditions, starting in 2009 with my surgical hysterectomy.  I was officially diagnosed with POTS at Mayo Clinic fall of 2011, Hashimoto's Disease was diagnosed in 2010, MCAS currently being diagnosed.

3. But I had symptoms since: My first major symptoms presented as endometriosis in January of 2009.  Looking back however, I believe I've had several bouts of dysautonomia and/or MCAS events throughout my lifetime since I was a teenager.

4. The biggest adjustment I’ve had to make is: Constantly adjusting. I hate it. I'm a planner and the utter chaos of my health conditions drives me nuts.  No two days are ever the same.

5. Most people assume: For awhile that I was ok,  because I didn't look sick.  Now I think most people assume that I'm struggling to get on top of my health because I've been so vocal about my journey.

6. The hardest part about mornings are: Not knowing what kind of day I'll be facing.  Is it a "walk and get a couple of things done" kinda day or a "my bed is my best friend and so is the TLC channel" kinda day.

7. My favorite medical TV show is: Breaking Bad and Mystery Diagnosis

8. A gadget I couldn’t live without is: My iPhone. It's my lifeline and connects me via text or facebook to friends and online support when I can barely move or think.

9. The hardest part about nights are: Sometimes sleeping, but usually reflection.  It's at night that I look back on my day and more often than not lament over the lack of accomplishment. The mornings are hopeful, the evenings are reality.

10. Each day I take _ pills & vitamins. (No comments, please) Well, it used to be 3, but I'm on week #2 of trying a MCAS treatment protocol so that's got me currently at 16 pills/vials a day.

11. Regarding alternative treatments I:  Have tried a few, particularly for menopause and nothing has helped. I'm open minded(ish), but want to exhaust all traditional medicine first.

12. If I had to choose between an invisible illness or visible I would choose:  While a visible illness would make it easier for others to understand, an invisible illness gives me the option to "fake it" when I want to. In other words, there are some days that I try really hard to slap on makeup and put on a happy face because I'm just sick and tired of being sick and tired.  When I pull it off successfully, I'm glad that my illness is invisible.

13. Regarding working and career:  My work for the last 13 years has been CEO of my household and raising my son.  I am FAR below my capacity to do my job to my satisfaction.  My husband has had to pull many, many hours of double duty.

14. People would be surprised to know: How afraid I really am. The future holds so many question marks, it's scary.

15. The hardest thing to accept about my new reality has been:  The utter and complete lack of control over my own body. 

16. Something I never thought I could do with my illness that I did was: Complete the LA Marathon in 2011, in the pouring rain, uphill both ways (ok, I'm exaggerating that last part).  Before I was officially diagnosed with POTS, I had a whole mind over matter attack and wanted to get back to my marathon days.  I completed it, but it still didn't change my health situation.

17. The commercials about my illness: Would be amazing if they existed!

18. Something I really miss doing since I was diagnosed is: Being active.  I push myself to walk when I can, but I really miss doing stuff when I feel like it and walking as my main coping tool.  Now, it's just an activity I push through.

19. It was really hard to have to give up: Volunteering.  While I still do what I can, I dearly miss volunteering at my son's school, and other places when I feel like it.  I'm trying to get that back, but since no two days are the same, it's hard to commit to volunteer.

20. A new hobby I have taken up since my diagnosis is: Blogging!  I love it, when I can concentrate long enough to pump out something coherent.

21. If I could have one day of feeling normal again I would: Travel somewhere with my guys.  I really miss vacations that don't include a stop at Mayo Clinic.

22. My illness has taught me: Patience and a certain amount of faith that things will work out the way they're supposed to. 

23. Want to know a secret? One thing people say that gets under my skin is: Have you tried <blank>?!? While I appreciate where the suggestions come from, I've lived with this body and these conditions for years now...trust me, I've tried and researched most things you can suggest.

24. But I love it when people: Just act out of compassion.  Bring an unplanned meal, send a card, text me randomly, invite our family over even if we can't make it.  I am fortunate to have many loving, caring and supportive friends and family.

25. My favorite motto, scripture, quote that gets me through tough times is: Never Give Up!  Never Surrender!! and lately Power to the POTSies!!

26. When someone is diagnosed I’d like to tell them: Take a deep breath and dig down deep for your patience...treatment and stability is a very long and trying road but it is VERY possible!

27. Something that has surprised me about living with an illness is:  It's brought me and my guys (my hubby and kiddo) closer.  We've been forced to strip down to the bare basics in so many ways and that means leaning on each other more. 

28. The nicest thing someone did for me when I wasn’t feeling well was: Listen to me.  It is so lonely being chronically ill every single day.  It's appreciated when someone takes the time to just listen.

29. I’m involved with Invisible Illness Week because:  Speaking out is a way to make the invisible visible. If you don't explain your struggle, how can you expect others to understand?

30. The fact that you read this list makes me feel:  Happy.  Thank you for listening to me!