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But, life and death have a way of happening while you're busy making other plans. This is definitely not the post I expected to write. This has not begun nor will it end the way I brainstormed it in my head for the last 5 days because I suppose it was never meant to. I am here in this moment for a reason. I need a refill on joy and I hope to find it in these words.
"I may not have gone where I intended to go, but I think I am where I was intended to be..." right here, in this dark room in Orlando, Florida listening to the rain and trying to be at peace with the fact that the only thing certain in life is death.
But before death, there is life. And my Uncle Ricky lived a very vibrant one. To him, laughter WAS medicine, no, it was life. Always telling a joke, smiling and telling everyone "not to worry about 'it'." And "it" was everything from your broken shoe lace, to your bills, to your weight (especially your weight, Ricky was a man who loved his food and wanted you to love it too). He lit up a room and was a father figure to more children than anyone cares to count. A heart of gold and the spirit of a child.
Although he and I hadn't spent too much time together these recent years...I know, that if we had ever spoken about my illness, he would have said: "don't worry about it." But with such sincerity and truth, that I would've actually listened.
So to honor his memory and his joy, I approach today's meme with a sense of humor.“Worry never robs tomorrow of its sorrow, it only saps today of its joy.” ― Leo Buscaglia (Retweet This!)
#scleroaware14 #scleroderma
One of my biggest challenges and adjustments with this illness has been keeping up with my medication.
Filling it.
Taking it.
Dropping it off.
On an empty stomach.
With food or milk.
With a full glass of water.
Before bed.
In the morning.
Once a day.
Twice a day.
Avoid antacids.
Add a probiotic.
Order online.
Pick up at the store.
Don't get pregnant.
Can't get pregnant.
Class A, B, C or D?
Generic.
Name Brand.
Co-pay.
Deductible.
Automatic refill.
Authorization required.
My medications are a full time job. A daily routine as necessary as brushing my teeth. A biweekly errand that takes the place of going to the cleaners. (Cause when you're on this many pills, a dry cleaned shirt is the least of your problems) I organize pills the way healthy people organize laundry. Each medication has its proper place in my pill box, in my day, and in my body. There are certain colors and delicates you can't mix or you'll be left hanging out to dry.
No one WANTS to pop pills. But some of us have to. I fought this for awhile. I sometimes still do. I rebel and take half the dosage as a way of asserting control over my life. Sometimes I feel empowered when I do this, other times it bites me in the ass cause I feel like hell. Regardless, medication...is my reality..it is my "normal." And I'm not going to fight it anymore.
People will judge me, tell me I should drink some weird tea concoction instead, or get a gym membership and massage treatments. And that's fine, you can tell me I should do that, and trust me...I HAVE, done. all. of. that. But, I've been off my meds, I've seen and felt firsthand the havoc this disease can wreck on my body when I'm not on any drugs, and quite frankly I'd rather live a good life NOW, than risk an early death by worrying about "potential side effects" in a future that is not guaranteed to any of us.
I say this because people's first question is: Well aren't you worried about the side effects? Of course I am! But as long as the immediate side effects aren't worse than the pain and suffering I'm dealing with in the now, I'm willing to take the risk. For those drugs that are more serious, I work with my doctors to taper me off them when we can and I take other vitamins and supplements to counteract what they MIGHT be doing to me.
Rest assured, concerned family and friends, I've done my research, I'm doing what I feel my body needs.
The truth is, when I think about this disease and the medication I keep coming back to one point: live in the moment, one day at a time. If I spent all of my time trying to prevent what MIGHT happen to me in the future based on prescription pill warning labels, I'd be dead by now, or at least terribly ill. The future isn't guaranteed to any of us. All we have is this moment (as my Uncle Ricky's sudden death reminds us) and I want each moment to matter. And if your moments are filled with pain and fatigue it can consume you and rob you of living. So, I choose to take 14 pills a day because I choose to live, and to live in the now.
What the future holds is not in my hands. I have only a limited amount of control over any of it. Scleroderma could be the cause of my death just as easily as a car accident might. The when, where, why and how of our demise is and will always remain a mystery. If the prednisone I'm taking now causes osteoporosis when I'm 60, I'll cross that bridge when I get there. For now, I'll be sure to take my calcium and work out when I can to prevent it as much as possible.
But I will not dwell on that list of side effects that are read so quickly at the end of commercials or printed in tiny letters on every prescription I take home. Because doing so will only stress me out, and THAT I have learned, is worse for my health than any pill I've ever been asked to pop.
In loving memory of Ricky Gonzalez (1954-2014)
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well said!!
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