Tuesday, April 17, 2012

The Unknown

I heard the rattle of a curtain and the click of a mouse. "How quickly a week passes, huh?" my nurse says, making polite conversation. "It passes even quicker when you don't want the day to come," I reply in a somewhat callous tone that I immediately regret using even though it's how I feel. I hear her sympathetic sigh as she motions toward my arms with the piping hot blanket.

"We go 'right' today," I grumble. She gently places the blanket on my right forearm and gives me a smile. I dare say the nursing staff has grown quite fond of me over the past few months. Partly because I'm polite, but also because I'm self-reliant and I barely make a peep, spare a moment to ask for some water now and again. I'm what they call an "easy" in the nursing game.

I loathe hearing the sound of my own voice as I state my name, first and last, and my allergic reactions for the umpteenth time, but it's protocol so I trudge through it. Wouldn't want to lose my "easy" label now, would I?

The clink of the plastic tubing on the I.V. pole drives me mad and I wonder how it felt to hear it as often as Angela did. I guess the way so many people with a chronic illness do...they learn to tune it out. That incessant "tink tink tink" with every movement no matter how slight. I wonder what I'm complaining about when I can hear beeping coming from a dialysis machine that's connected to a guy two curtains down. What about the gal in the station next to mine? She's bald and shivering from weeks of chemo and is still trying to smile, all while sporting a nifty little afghan hat she was gifted by the nuns that give out hand stitched items on a regular basis.

My nurse counts down from 3 and then jabs me as smoothly as she can. I can't help but twitch and watch the needle and IV slide into my vein. The vein collapses and immediately begins to bruise. She tries again and the new vein rolls, but after a little digging it's in. It's been a good day. You'd think I'd be used to them by now, but I'm not. I never will be. I've spent the last 6 months getting IV infusions for my untraceable vitamin levels, the same vitamin levels that are causing me night blindness and lowering my already compromised immune system to subterranean levels. And nothing is happening. Nothing good and nothing bad. I'm maintaining my mal-absorbed levels and looking into future options.

I hear an elderly man who just got a kidney transplant complain that he was tired of having to remember all his medicine. I heard the sound of two "code blues" followed by rushing feet and the clatter of a body-filled stretcher which disappeared as quickly as it came.

Here's where the hard part comes in. I have more than four hours alone with my thoughts. Yes, I watch a movie now and again. Something I can recite each word in the cadence of every character with spot-on accuracy. Maybe I'll post some sophomoric status update on my TwitteryFace account then check it every five minutes hoping someone will find me amusing. Then I listen to the voices in my head...the soundbytes of my mind that hammer in the questions that only create more questions: "If I can't absorb the vitamins I need to live, what does that mean for my future? What about these new miracle drugs that are supposed to slow down the damage CF does to my body? Will I even absorb them enough so they'll work the way they should? If I can't, then will they make them in IV form?"

Just then a familiar face peeks around the curtain. My doctor has unexpectedly dropped in to discuss the options. We agree on a few months spent with a PICC line and daily multivitamin doses. If that doesn't work...then a port-a-cath it is and a bi-weekly dose of vitamins in my home for the rest of my life. I'll be honest and say that a port scares me because it was a port infection that started Angie on her final downward spiral. Yes, things have changed in twenty years, but emotional hurdles I see so vividly are hard to clear.

I speak the words that anyone could see on the tip of my tongue:

"So what does all this mean for me and my future?" I asked. "What about these new drugs and what about the possibility of transplant later on in my life?"

"Well, I can't say for sure,..." my doctor replied in all honesty. "...but we're hopeful and we're going to figure this out." She sends me a look wrought with optimism and I can't help but be encouraged...and frustrated...and angry...and weary.

The progression of my particular journey with CF is unique. In the immortal words of one hit wonder "Harvey Danger": I'm not sick, but I'm not weeeeeeelllll..." I have so many blessings and so many unknowns. I'm very scared and I'm not ashamed to admit it. There is very little research to go on about my "situation". I have no idea what's going to happen, but I'm taking things as they come...guinea pig that I am.

Meanwhile, back in the real world, I feel like an island unto myself. I see friends and family following their "blueprints for life" and aside from a few bumps in the road they are getting everything they ever hoped for. I have little to say and less in common with them than ever before. We are running perpendicular to one another. I'm not jealous or envious of them, but it's been much harder to handle than I thought it was going to be. My heart hurts....but I press on.

As I write this I realize that there are people with CF who are going through journeys of their own. Some more perilous than mine will ever be...and some of them dying despite never giving up. I know that even though we are making outstanding advancements in drug therapy and improving the quality of life for those living with CF...those advancements aren't coming soon enough for far too many people.

Still, I believe in my heart that every day we live...we prove the doubters wrong. We triumph against adversity and find success and joy in the little things most take for granted. We realize dreams that are slowly but surely becoming the norm...and we have our stories to prove it.

So on a day when I fear the unknown...when it's been hard to breathe, there is a pain in my side and streak of blood in my mucus....I am peaceful and I'm thankful that I have another day. And even if those new drugs may not ever work for me...I know that someday they will help others live a life where cystic fibrosis is just a blurb in a research paper and an example of "what used to be" in a 7th grade biology text book. Best of all, some student will raise their hand in that class and say:

"I have that CF thing, but I never had to do what so many others did years ago. All I have to do is take a pill a day and it's nothing to worry about anymore. It's a piece of cake."

Here's to the day when we all get a slice of that cake.

Please take a moment to donate to my Great Strides campaign for the CF Foundation. Your donation helps fund the research to improve the quality of life and some day find the cure for CF.

http://www.cff.org/Great_Strides/welcometojoshland

And take a moment to learn about other great organizations that help the CF Community live life to the fullest and achieve our dreams:

CF INFO AND RELATED SITES

Peaceful Things,

Josh

Help Moganko Meet the Muppets For Cystic Fibrosis Awareness!

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14 comments:

  1. My dear, sweet, honest Josh....

    I have no words, I wish I did. Sending lots of love and hugs to you through the abyss...

    As always, much love ~j

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  2. My hubby just got out of the hospital.. his PFt's were Horrible and he had to have a surgery to get His sinus's cleaned out.. So He can sympathise.. you are on my prayer list and I read your posts every time I catch them on my facebook..
    just remember you are AWESOME!!!!! and we will find a cure

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  3. Josh, even in your saddest most defeated days, you still touch our hearts and encourage me to be a better support for my daughter. By the way, I vote port....I know your reservations, but I also know how helpful my daughters has been to her.

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  4. Josh, thank you for sharing so honestly and vulnerably.
    Sorry things have been so difficult for you these past couple years. In the face of it all, you remain an inspiration to me and so many. Keep the faith.
    Sending lots of love this day and always...
    Uncle Brian

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  5. Josh your strength brings tears to my eyes and hope to my heart. You have given my little princess Allissa the comfort of acceptance in her battle with cf. You are a part I our family and all you do and who you are is a part of our daily life. Thank you and I pray each day is a better one. Thank you.

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  6. I am going to beg for a port next admission. Too much anxiety with PICCs. We can be new port buddies <3

    As much as we have the wonderful web to help us find support there are still days when I feel miles away from everyone. Where I look around at family and friends and their woes and wish for only a day that I had those woes and was not facing mine. But then again I think everyone has those days.

    Much love to you Josh!!!

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  7. Oh Josh, just read this. Love you and it so much. It has been a hard month for me too, and this sums up some of it. Thank you for expressing yourself. xo,bp

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  8. I love you! I love you! I love you!!!

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  9. Thank you for sharing! Praying for you :)

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  10. So, I'm late on the bandwagon of this post, but I just wanted to stop by and say: Beautiful. Thanks for writing this. I know what you mean about feeling like you are stuck while all those "normal" people are making plans and then carrying them through and getting what they hoped for—that's something I've really been struggling with for the last few years.

    Oh, and for what it's worth, I have really terrible absorption and am still having some really amazing effects from Kalydeco. I suspect not as much as some people with better pancreases, but still enough to make it well worth it. I'm crossing my fingers that you'll be the same in a few years when there are more drugs available.

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  11. Praying for you, Josh. Thank you for all you do for the community! You're a treasure.

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  12. Hey Josh,

    Maybe you just need to start snorting Flintstones chewables. kidding

    I had a port put in about two years ago for chemo. It's way better than having PICCs when I get an exacerbation. If it comes to getting one you can do it :)

    Peace,
    Steph

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  13. Josh, how about an update. It's been some time, or are you just hanging on facebook these days? You know how I feel about that web site.

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  14. You are remarkable and I am proud to call you a friend and a brother in fighting. We'll be here to see the end of this! I know it! ♥

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