Losing It

“Anyone who has lost something they thought was theirs forever finally comes to realise that nothing really belongs to them.”
― Paulo Coelho (Retweet This!)

As a poet I should probably not admit that I am slightly obsessed with Jewel. (Yes the singer/songwriter who wrote a terrible book of "poetry.")...BUT, I am. Her music got me through those pesky years of puberty and teen angst and I enjoy the fact that I can sing the songs in the same key. While listening to her music and reminiscing about the "good ole" days a couple of years ago I was reintroduced to her song Hands. It was one of the pretty popular ones back in the day. And while I felt its meaning then, it has taken an entirely new meaning in my life now.

As a patient of scleroderma, one of my biggest challenges the last two years has been dealing with the limited use of my hands. It is extremely debilitating and frustrating to not be able to do things, anything because the tips of your finger ache, or because your joints and knuckles curl up and your skin tightens.

I subconsciously anticipate severe pain with every single thing I touch. It hurts to pick up a bath towel, turn on a light, hold a utensil, use my car key to turn on the engine, hook/unhook my dog's chain, pick up a coin, squeeze the toothpaste, brush my hair...My hands are affected by every task I do and I think I've programmed myself to protect them from pain...My right hand is worse than my left and I always reach out with my left hand to shake another person's hand, which sometimes seems awkward, but I have to be in protective mode, otherwise the slightest unexpected touch can send me into a pain that makes me hold my breath until I can shake it off!- Joanie, Akron OH

If you want to work in this world, be productive, take care of yourself, feel empowered and be independent, you need your hands. Of course, many people get along without them, they've learned to adapt and make adjustments. But those first few months of limited mobility and use are hard.

One of the symptoms of scleroderma is known as Raynaud's Phenomenon. I have another blog post about it HERE, but in short, Raynaud's causes the blood vessels in the extremities (fingers/toes/lips/nose) to constrict, reducing blood flow and causing them to turn blue/purple and to tingle. It is usually triggered by cold temperatures and stress (I will always live in TX) After too many episodes  or years of living with this symptom, patients can develop painful ulcers on the tips of their fingers and toes.

Photo Courtesy of Jess- Scleroderma Strong

It feels like I've got 'ice burn' as if I had put my bare hands on a block of ice and kept them there! I get ulcers on my fingers which can be the most severe pain I've ever had , if someone offered to chop my finger off I would say DO IT !!!!- Karen, Great Britain 

If you suffer from Raynaud's you are not getting enough blood flow to the extremities which in turn makes it harder for these ulcers to heal, which can lead to infection. If left untreated, these infected ulcers can get gangrene which could lead to the necessary amputation of the fingertip or entire digit.

"My Raynaud's is worse then labour. Pain that never stops. Enough to make you go crazy."- Silvia, Woodbridge, ON

"My Raynaud's feels like Needles and razor blades with frost bite."- Karie Ann, Kansas City, MO

Over the last year, I have experienced all of this. (Check out pics of progression) Of all my trials and tribulations, I can honestly say that the deterioration of this one little fingertip has been THE most painful and draining experience so far. (Not emotionally, but physically). I have lost countless nights of sleep, spent hours hunched over on the couch holding my hand agonizing in pain popping narcotics that didn't work, and was forced into a hospital bed for a 6 day infusion treatment that did nothing but set my veins on fire and cause multiple bruises on my arms where they couldn't find a vein. 

I wouldn't wish this experience on my worst enemy. I didn't go through several rounds of chemotherapy (and I AM thankful for that) but over the last year (the ulcer started as a scab last March and got worse) I have felt pain and loss like none other and although I have kept all my hair (though it's falling out from stress) I lost a fingertip. A part of me that won't ever grow back or be the same ever again. And though I will do everything I can to prevent this from happening again- there is no guarantee. (Another ulcer has already begun to form on the index finger of my left hand- yay)

"In the winter when I do have Raynaud's with the ulcers, my fingers hurt like no other pain I've ever had. For the ulcers to be so small, sometimes I feel it'll feel better to cut the whole finger off..."-Brittany, Winnsboro, SC

I have had to learn how to live with a hand and a half. I have had to relearn how to live and function as a left-handed person. I brush my teeth, eat, clothe, shower, open jars, drive and do my hair mostly with my left hand. Those first few months sucked. But, I'm getting better and better at it each day, and for that I am thankful. 

I guess what I now understand about Jewel's song is that our hands belong to us and yet they belong to the world because it's what we use to make, create and help others with. My hands are not "whole" but that does not mean I am broken. I still have something to give and what I choose to give, make and create is my choice. 

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As a writer, the loss/disability of my hands is frightening and yet, because I am writer it is what makes my story that much more powerful. 

We find it shocking and yet admirable for cancer patients to show off their shaved/bald heads, I wonder if my shortened finger stub will incite the same response?

To read more quotes from scleroderma patients about what Raynaud's feels like go HERE

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What do YOU think of my fingertip amputation? Is it a similar experience to the loss of hair that chemo patients go through? Did I go too far? Are they 2 different experiences? Please share your comments below. I want to hear from you!

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Refills Require Authorization

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There is a strong wind blowing behind me. There's a calming view of a lake in front of me. The sun is setting and the rain has begun to fall. A week ago I would not have believed you if you told me that I would be in Florida mourning the loss of an uncle. I would have said: "No way, that man is full of life, energy, good humor, joy and strength."

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.

“Worry never robs tomorrow of its sorrow, it only saps today of its joy.” ― Leo Buscaglia (Retweet This!) 

So to honor his memory and his joy, I approach today's meme with a sense of humor.


#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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Sick & Tired of Being Sick & Tired

"When you are young and healthy, it never occurs to you that in a single second your whole life could change." - Annette Funicello (Retweet This!)

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I'd like to focus a few of the blog posts this month on explaining and "demystifying" some of the symptoms that accompany this disease. For many of you (including myself), you knew nothing of this illness until you met me or someone you know or you yourself got diagnosed with it. 

Like this year's awareness campaign says, you probably heard the diagnoses and went: "sclero-what?" Or in my family: "es-sclero QUE?" And when it was repeated slowly...scler-o-der-ma...you shook your head yes in agreement, and still didn't know what the hell the doctor, or your friend/family member was talking about. 

If you were the one that was diagnosed, you probably thought:

Thank God, at least it's not cancer.

And then, as the doctor began to explain what could potentially happen to your skin, lungs, esophagus, kidneys, hands, feet and body...and as you began to live with the never ending pain, fatigue, skin tightening and miserable medication side effects you begin to think:

Dear God, why couldn't have been cancer?

At some points, the thought of being diagnosed with something a bit more predictable. Something more people understand and support. Something with the hope of remission or even the certainty of death is all we really want. No illness is easy, but at times, being metaphorically thick skinned while literally getting thick skinned can be impossibly difficult. 

 Jess -SclerodermaStrong

"Look what this disease has done to me! Changed my body so much that even my eye shape is different. Sometimes I may not act like it but I go through A LOT on a daily basis. I don't want a pity party, I just want the world to know about a special group of people who smile in the face of adversity and conquer whatever may be in their way."

All we want is to catch a break. One day off from the pain, the pills, the fatigue and the discomfort. But those breaks are few and far between. We experience just as many good days as bad, if not more of the latter than the former.

If we want to make the most of our "good days," we have to learn to how to balance our free time between social gatherings, personal and household responsibilities, and rest. 

Pain in our joints and muscles and all over our skin comes with the scleroderma territory, but sometimes a symptom even more debilitating than the chronic pain is the chronic fatigue. 

Jovana- An amazing Sclero-Warrior/San An Support Group Leader

"My fatigue is like the heaviest 'ball and chain' pulling on my joints and lungs. It is never ending."

Chronic fatigue in scleroderma and in other auto-immune diseases isn't just your average: "I'm extra tired today, so I guess I'll take a nap." Chronic fatigue is like when a healthy person gets the flu and they decide they still want to go to work but do as little as possible throughout the day to not over exert themselves more than they have to...The shortness of breath. The achey feeling. The dragging your feet. The stopping every 5 min to sit down....yeah it's (kind of) like that...only...it's forever. (Unless you're on prednisone, but more on that another day) 

Chronic fatigue is: sleeping 12 hrs, waking up and not feeling at all rested.
Chronic fatigue is: showering only when you really have to (or smell) because you know that showering will take all your energy 
Chronic fatigue is: patting yourself on the back for making it out of bed and onto the couch for the day
Chronic fatigue is: taking 2 hrs to get ready for work/an outing because every activity requires a 10 min break afterwards (yes, even brushing your teeth, getting dressed and putting on make up feel like a workout)

"I want to do things but just getting up & showering & getting dressed can be so tiring. That it is not worth the trouble."- Michele, Indiana

It is not a symptom you can see. It is not a symptom you can even understand unless you've lived it. There's not enough coffee, Red Bull or Coke that can make it any better and the more you try to fight it, the worse it gets. 

Over the last 7 years I have had to learn (am still learning- ask Lupe!) how to manage my chronic fatigue. It is a delicate balance. Some days (thanks to the meds) I feel like I'm on top of the world...so I try to take over the world. And what happens? I end up in bed for 3-7 days afterwards. Sometimes, it's worth it. Other times, not so much.

"My fatigue at it's worst feels like someone plugged a vacuum up to me and sucked out all of my energy."- Wanda, Montgomery, AL

Before sclero, I was definitely a doer. A go getter. My schedule was non-stop. Since diagnoses, it's been very hard to adjust, but I know that if I want to live a full life I have to give my body what it needs. And, to my dismay, it needs more rest than the average person. 

"EVERY inch of my body aches. My skin feels like it's going to split wide open."- Trish, Waco, TX

I recently sent out a survey to find out what are other scleroderma fighters saying about their chronic fatigue and I included some of their quotes throughout today's post. But there were so many, here are a few more:

(How would you describe your chronic fatigue?)

"Some days, even resting makes me tired."-Jacob, Humble, TX

"My body feels like I am dragging it through sludge. Some days even my mind just wants to sleep."- Shelly, Lanark, IL

"I feel like I am dragging a child around who is hanging on to my legs."- Patty, Tallahassee, FL

Others described the fatigue as "running through their veins," "bone weary," and "life canceling."

So, I just ask for one thing, don't say you envy my ability to take naps in the middle of the day. Because more often than not, it is out of necessity and not desire. I work from home because I have to, not because I really want to. I would much rather have the energy to do things...anything..but sometimes I just don't. And, if I cancel plans because I say I'm tired, 95% of the time it's true..and now you know what kind of "tired" I'm talking about. So, don't take it personally...just try and understand.

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30 Ways to Help Spread Scleroderma Awareness

Spreading Awareness- "Priceless"

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Welcome back! Clearly I haven't offended you enough yet as you have come back for more meme/pics/comics. I hope I do not disappoint. 

Today's images, similar to my body, somehow managed to take on a life and a story of their own. I tried to shape it and control it to do one thing, but in the end the pictures wanted to do something else. And like the true artist that I am, I relinquished control and the result (I think) is even better.

It started very simply. Take the standard "holding a hand written sign with some amazing fact/anecdote" while "looking" the part of what it says on the sign. (There is surely a name or definition or research study for these viral images by now- remind me to look this up) So, as per my usual routine, I took several pictures with different "looks" in an attempt to capture what the sign read. 

My next goal was to post here to my blog and have you all vote on your favorite. Here are the results: 

I wanted to have a little fun with it so I made some interesting faces. (I was an actress in my previous life, you can't blame me)

BUT, as I stared and stared at the different pictures and read and re-read the sign, I realized that if I just rearranged the pictures and split up the sentences...I told a great story. I had somehow (unintentionally) created a comic strip!

So, I got to work, using my limited photo editing skills, and this is what resulted: (Made me laugh)

What do you think? I find it to be hi-la-ri-ous! 

All of the facts on the signs are true. (Slightly inspired by the Mastercard commercials) Scleroderma affects mostly women (4 to 1) between the ages of 25-55. I was a few years "young" to get the diagnoses, but the truth is age is NOT a real factor or deterrent for this illness. Which is precisely why I cringe when doctors or nurses tell me I'm too young to be this sick. (I cut normal people some slack cause they shouldn't know better) But doctors went to school, most auto-immune diseases attack YOUNG MINORITY WOMEN in their child bearing years. I mean I found that info online! They didn't read it somewhere while getting their fancy degree from their fancy school? (just saying) I'm not too young, I'm just the right age.(Unfortunately)

Young people are supposed to epitomize ideal health. If you are in your 20's you are in your "prime." Running marathons, biking across the city, hiking trails followed by drunken nights and Sunday morning hangovers are supposed to be your hobbies. And for about 5 minutes (19-21), I had that. And then, it all just faded away. I spent more time in bed than at the gym. Taking a shower felt like a workout and climbing one flight of stairs was the only "hiking" I could do for about 2 years. I don't drink because the acid reflux from one drink that burns my trachea for 12 hrs after isn't worth 5 minutes of drunken bar debauchery. I've sacrificed a lot just to feel "normal"and given up who I was and wanted to be for someone that I rarely recognize but am I learning to love again.

Since diagnoses, I have been in and out of numerous emergency rooms, hospital beds, doctor's offices and cancer causing x-ray machines. I've seen the inside of my brain, lungs, heart, uterus, stomach, esophagus, and hands. I've given enough blood to save at least 5 lives and peed in more cups than a meth head on parole.

I will be honest, I have hated most of my 20s. I'm ready for 30- hoping a new decade will bring more joy and less pain. More acceptance and less fear and anger. But I know that age really is JUST a number. It won't change my fate or erase my past. But the last 7 years have brought me a great deal of wisdom- perhaps more than most people my age have- and for that I am thankful.

In the end, all of those numbers and all of those facts aren't the numbers that make me who I am. The numbers that matter to me are that I have 1 mom and 1 dad that love me very much. I have 1 husband that cares for, respects and worships me. I have 1 sister that loves me in her own quiet way and showers me with great gifts. I have 1 brother that I know will be there when I need him and I have a great handful of friends that I can count on when I just need some damn froyo and a cupcake to make it all go away.

I also have just 1 body to carry my 1 soul, and just 1 lifetime to make it all matter. I had 22 great illness free years that I took for granted and will always remember (with joy and not with regret). And by the time I'm 43 I will have spent more time being sick than being healthy and yet I don't think I would change any of it. (Besides, I wouldn't have all this time to write if I wasn't this sick) But, I also know that I have "X" amount of years left to keep living, telling my story, and spreading awareness, and the fact that God gives me that gift each and every day I wake up that is what counts and that is priceless.

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Back to Basics

“You may never know what results come of your actions, but if you do nothing, there will be no results.”
― Mahatma Gandhi (Click Here to Retweet This Quote!)

And so begins the social(media) experiment. Whereby I try to make at least one of these memes/pics go viral all for the sake of raising awareness. Will it happen? Who knows. Will it matter? To some. And to me, that's what counts. 

Over the month of June, I will post these self-created memes/pics/comics on my blog with some context, and on my FaceBook page and Twitter to see how many "likes," "shares," and "retweets" I can get. Maybe one of them will land me on Ellen. Maybe not. But I'm sure that at least within the Scleroderma community, it may cause a stir. 

We start this journey by going back to the basics. A simple introduction to me and to scleroderma. I took two photos. Which one do you like? 

I couldn't decide if I should be happy and enthusiastic to garner support? Or if I should be more like "yo..wtf?" What do YOU think? (Share in the comments section!)

This back to basics pic was inspired by the ones I've seen that get thousands of likes for "beating" cancer. Yes, that is something to celebrate, but what about those of us that struggle on a daily basis against something we will NEVER "beat" and that may eventually kills us? Chronic means forever, there is no cure and rarely remission. This disease affects parts of my body I didn't even know could hurt! (Know that tight, swollen feeling you have when a bug bites you? Imagine that, all over. Ever had a simple glass of water feel like its burning through your esophagus? Or had your jaw wired shut and have to take small bites cause your mouth won't open? Or that fatigue you get when you have the flu and life sucks? Yeah, it's like that: ALL. THE. TIME.) 

My mom recently told me she met another woman who's had Scleroderma for over 20 years. The woman said she was diagnosed with cancer 5 years ago and went through chemo and was thankfully able to beat it. The woman told my mom that compared to her battle with scleroderma, cancer and chemo was easy. (I'm not making this stuff up, and I share it because it is someone's truth) 

So, don't we deserve some recognition for fighting a never ending, painful and debilitating battle? Where's MY make a wish foundation? (I got some wishes!) 

But, like I've said before, if you're not getting your miracle, then it's time to BE the miracle. And maybe, just maybe...one of these pictures will reach someone in need and change their life for the better. Maybe...just maybe someone will see this and decide to get the help they need or be filled with the hope they once lost. Maybe, me or my words can be the miracle someone else was looking for. 

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30 Ways to Help Spread Scleroderma Awareness