Lady in Red

Last night was an unforgettable night...for a couple reasons.  First and foremost, it was "date night" and we attended a show downtown called "Cirque Goes to the Movies". This spin off of the traditional Cirque de la Symphonie, showcased some amazing aerial acrobats, jugglers, contortionists and strongmen choreographing their number to some of film's most iconic numbers, such as Titanic & Star Wars, with music performed by the Houston Symphony.  What an brilliant combination, the Symphony and these crazy talented, strong, and athletic artists doing things unimaginable to most.  It was BY FAR one of the best shows, I've ever seen in my life.

These "outings" (while a blast and still completely worth it)  do take a lot out of me.  It takes me quite a while to get "fancied" up these days, and last night, I was the "Lady in Red".  I bought a new red dress, donned on some leopard print heels, painted my lips a shade of red, and best part of it all, I still had some reserve energy to go do dinner and the show.  Our seats were perfect, located very close to the stage, but smack dab in the middle, which means ... bathroom breaks weren't going to be easily concealable.  So at intermission, I decided I should go to the restroom.  The venue was quite large, and the restrooms were a hike for the average person.  There were however, some handicap/disabled restrooms much closer to our seats, so my husband suggested I use those.  He knows me often better than myself, so I hesitantly listened and agreed.  I say hesitantly, because, I didn't have my oxygen with me.  It can be rather cumbersome to navigate with, and we were using cabs for our travel needs, so it was door to door service.  I figured for the night, I would be okay, so as long as I wasn't needing to walk too far. Plus, when able...a girl needs a night out, dressed up, without the "accessory" of oxygen!

Here comes the other unforgettable part of the evening, one that for some reason or another, I can't seem to shake.  After making the (shorter) hike to the handicap restrooms, I was leaning against the wall, trying to catch my breath.  I am joined in line by a couple older ladies, when one approaches me and says, "this is the disabled restrooms, young lady".  I knew what she was thinking right then and there.  She took one look at me, the "Lady in Red", and saw no evident signs of me fitting the label of being "disabled".  I didn't have my oxygen on, I wasn't in a wheelchair, I had all my limbs, and to her, I was simply abusing the "disabled code of honor".  I turned to her and stated that I knew it was the disabled restrooms and continued to wait, trying to catch my breath, and keep my emotions in check.  She didn't stop..."Are you waiting for someone", she asked with a slight bitterness in her voice.  And then, I caved.  I firmly looked her in the eye and I said, "No, I am not waiting for someone, I am waiting to use them myself, because" ... and before I could even EXPLAIN, she rolled her eyes and gave me a look of utter disgust. I continued ... "I am waiting to use them myself ma'am, because I can't breathe, and have terrible lungs.  I am on the lung transplant list, and simply walking up a flight of stairs can make me feel like passing out.  So, I know I don't LOOK the part, but inside I am very sick".  Caught off guard, she replied, "Oh, well then, that is fine (giving me her approval that my excuse warranted the need for the disabled bathroom)....it's just that, you look so cute, Lady in Red".  Before she could see my eyes welt up with tears, a restroom became available and I snuck inside so that she didn't see my vulnerable side, my hurt, my embarrassment, the emotional pain she had just caused.

It's the sad reality, but this happens much more often than I'd like to admit.  I have to explain, WHY I am using the handicap spot, or bathroom if I don't have my oxygen on.  Last night was no different, it was just that this woman took it upon herself to say something directly to me.  Most of the time, I get disapproving looks if I happen to utilize the handicap bathroom, or parking spot ... without my oxygen.  On rare occasions, I might need to just run in the grocery store for a quick item, and I won't take my oxygen in with me.  What people see, is a healthy young woman who appears to be able to walk fine, taking up a handicap spot.  Yes, I have my sticker up, but to them, I could be abusing it, using someone else's perhaps?  What they see on the outside, is far from the truth.  They have no idea how much energy it takes for me to just make it to the store.  They don't see the hours of breathing treatments, the pain throughout my body, the struggle to do everyday things.  They don't see the sleepless night, the endless coughing, the blood coughed up coming from my lungs.  They don't see or feel the suffocation, the muscle spasms, the shooting pains in my ribs or my back.  No, what they see is a "Pretty Lady in Red" who MUST have no regard for what it means to be handicap.

Point of this blog?  The point is, lets not be so quick to judge others.  Let's not assume the worst in people.  Do I wish I didn't need to utilize those handicap bathrooms and parking spots, you bet, and I often don't if I don't have my oxygen, purely for the reason of fear of getting disapproving looks.  It bothers me, probably more than I should let it.  I can't even describe the humility I feel when I see others look at me and judge me, if I don't have my oxygen on and I need to use that blue handicap sticker.  But boy, how that changes when I have my oxygen.  Then, people look at me and I can see the curiosity in their eyes, along with their feeling sorry for me.  People are often very nice and accommodating when I have my trusted oxygen slapped on, but without it, I am not validated. I must be "THAT" girl, the one who takes shortcuts in life and doesn't have any regard for others .... when in reality, that couldn't be further from the truth.  Do I blame the lady for questioning me, no of course not.  I don't LOOK sick on the surface, so why wouldn't she question me?  But there certainly is a time, a place, and a better way to go about things.  I am sure she's seen people abuse the handicap accessibility, I have seen it myself.  I just wish she wasn't so quick to judge, especially on a night when I wanted go out without my oxygen, without the heavy reminder that I am very sick.

So, it's a new year ... people often wonder what they can do to better themselves. Here's a resolution for you ... don't be so quick to judge others.  We often have no idea what others are going through.  Let's give people the benefit of the doubt, and NOT assume the worst in people.  Let's start there, and I bet you'll be surprised in what you find, when you open your mind and your heart to hope for the better in our neighbors, our family and friends and complete strangers.  People are often very good at hiding their vulnerabilities from the world, and people sometimes, just don't want the constant reminder that they are sick.

PCD Awareness

Well, I unintentionally, kind of slacked on the PCD Awareness month ... the last day of it is technically today, as it runs the month of October.  While the official awareness month might be over, PCD is NEVER over for me.  It is a daily, minute to minute, hour to hour struggle for me, so I felt appropriate to write this blog.  

It's been 28 days since I was put on the transplant list.  In that time, I've spent the last 14 days being pumped full of IV medications to get my lungs back to their whopping 22% functioning.  I've spent about 8 hrs a day hooked up, which includes late nights, early mornings and middle of the night infusions, so sleep has not been plentiful.  I'm tired, I'm bruised.  Yes, I feel quite a bit better, but lets remember that my "better" is probably comparable to a healthy persons worst day of having the gnarliest head and chest cold in your life, the only difference is that you get better, I don't ... in fact, I only get worse.  I still spend most of my days coughing, struggling to do the everyday tasks that once were easy, like cooking, cleaning, working out, shopping, walking the dogs...and it is because of this rare disease, Primary Ciliary Dyskinesia.  It is because of this disease, that I need a double lung transplant to survive.  PCD doesn't care what your dreams are, what you want to do, who you want to spend your time with, if you're married and want kids or where you want to go in life.  It interjects itself, and one simply must manage.



PCD is severely understood and often misdiagnosed.  Heck, I went 29 years of my life misdiagnosed.  It is crucial that awareness for this disease, and funds for research are raised.  We have come a long ways since the beginning of the PCD Foundation was launched nearly 15 years ago.  Started from scratch some amazing people (Michelle Manion and Lynn Ehrne amongst many others) have grown the PCD Foundation to what it is today.  Today we have a Clinical Centers Network for research and PCD care,we have a diagnostic and treatment consensus statement, we have genetics panels, we have a registry on the horizon, we have scientific meetings to teach & train medical professionals, we have the first North American PCD DRUG STUDY(!!!) and we have CARE days for PCD families.  Today there are 29 clinical and research affiliate centers here in the US and Canada.  This is up by 6 centers compared to just one year ago!!  My point is that we are making progress, but we still have SOOOOOO much more to do. So, so much more to do.

So, I ask of you, if you are so willing, would you please make a contribution on this day to the PCD Foundation?  Your contribution is tax-exempt and will be used to accelerate programs designed to improve the lives and healthcare outcomes of those with primary ciliary dyskinesia (PCD), like myself.

On this Halloween day, could you spare $31, for October 31st?  Or, maybe a calendar to go in your stockings this year?  Or, maybe you want a cozy t-shirt or sweatshirt showcasing PCD for this winter?  Thank you in advance to anyone who can donate, it means so very much to me!!!  Below are the links to the calendar, the apparel (and other merchandise) and of course the PCD Foundation Donation page if you simply would like to donate.  All of these methods, funds will go to the PCDF!!

PCD DONATION PAGE - https://pcdfoundation.squarespace.com/donate-now/

PCD APPAREL - https://shop.spreadshirt.com/breatheforpcd/

PCD APPAREL - https://shop.spreadshirt.com/RunningOnAir

PCD CALENDAR - https://www.yearbox.com/calendarsforgood/breathe-for-pcd-calendar/

TRANSPLANTAMOON.

Waking up today was much calmer and better than waking up the past few days ... that is because I got GOOD, no GREAT news!!!  My PET scan gave every indication to the doctors that the nodule they're following in my lungs is NOT malignant (yay, scream, happy dance!!).  This is by far the best news I've received in a while.

There is a little kicker however ... the doctors want me to have a repeat PET scan in 3 months to re-evaluate this sucker.  If the nodule is the same size, or larger, I will have to get a biopsy done to further rule out malignancy.  If the nodule shrinks (or even better, vacates the premises), no biopsy will be needed.

So...what does this means for going "active" on the transplant list?  Well, I can't go active until the nodule situation is cleared up (i.e., they determine in 100% certainty that it is not cancer).  The doctors are trying to AVOID a biopsy at all costs b/c the procedure is risky, and even more so for me and my already fragile lungs.  So, I am in somewhat of a stall period right now for another three months.

I was (and still am) at a point of being mentally, and physically ready to go active on the transplant list, so in one sense it is a bit disappointing that we can't move forward just yet (never did I ever think I'd say I was disappointed to not be listed) ... but in all honesty, I am just so thankful that the scan was negative, that is the main consideration.

Thank you for all the calls, texts, emails, etc over the past few days.  Waiting for critical results like this can be torturous.  For now, we try to keep me as healthy as possible and enjoy a few more months of "pre-listing" life.  As soon as I go active, I will have some limitations I have to abide by (like no travel more than 3 hrs from Houston, no alcohol, etc), that will extend beyond transplant as well.  In all reality we could be Houston bound for at least 2 years once we go active, so my little brain is wanting to get one last mini-vacation in, if my health allows ... we shall call it the "TRANSPLANTAMOON".  People always go on "honeymoons and babymoons" before getting married and before baby's arrival, so I say we do a "transplantamoon" before I get my miracle of a double lung transplant!!

Cheers and much love. 

Rebs