The Girl Who Cried Sclero...

I am sure there is a general consensus amongst my friends and family that I just need to shut up already. I mean "we get it, you're sick...Stop beating a dead horse!" And I can respect that feeling, but in reality, this "horse"(aka scleroderma) isn't dead. It lives inside me, threatening to break me down and pull me apart from the seams on a daily basis.

So...no...I won't shut up about it. Not until there is more awareness. Not until the word scleroderma is as common as the word cancer. Hopefully it won't take an epidemic to make it that way, and that's why I do what I do, so patients can be diagnosed early, get better treatment, and live better lives.

So, with today being World Scleroderma Awareness Day and with all the work that has been done to spread awareness, I wanted to highlight some of this month's best moments as well as give a shout out to all my family and friends who have supported me in some way throughout this journey.

THANK YOU! GRACIAS!

1. Memes

One of the most exciting things for me this month, has been to see the overwhelming response to my memes. Both from scleroderma patients themselves as well as family, friends and total strangers. I have shared these pictures with as many people as possible and they have kept paying it forward and sharing them with others. I have received emails, messages and comments from people I've never met telling me how much they relate and how brave they think I am for putting my story out there. It has truly touched my heart and reinforces what I know to be true: I am not alone and my story matters because I can give a voice to those who cannot speak. None of the memes went "viral" but I did reach more people than I ever expected.


2. TX Chapter on Great Day Houston

This past Thursday, June 26th, the Scleroderma Foundation, TX Bluebonnet Chapter had the privilege of being in the audience for KHOU 11's Great Day Houston show. This show is a daily talk show/morning show hosted by local celebrity Deborah Duncan. Back in May, I was in the audience supporting the Lupus Foundation and had so much fun that I decided to reach out the show again during scleroderma awareness month in the hopes that they would let us be a part of the audience to raise awareness.  Earlier this month, I sent an email out to their audience coordinator and asked when we could come, in a matter of a couple of hours we had set a date and were told to bring 12-15 people to fill seats. I spent the next couple of weeks trying to rally people to make sure we had enough guests. And...we did!

I believe there were at least 20-25 people there wearing teal, and supporting our cause. Our board president Audrey Brouwer shared information about scleroderma at the end of the show and afterwards, Deborah said she would be in touch with us to bring in a patient and/or doctor to interview about the disease. (How awesome would that be!) We had a great time, clapping, cheering, laughing and even eating BBQ with Deborah Duncan and her staff. I am so appreciative of all the people that came out to support even for just 2min of fame on local TV.

Check out the segment below:

Ay Papi...

3. Family Support
It is unbelievable the amount of support I have received from everyone in my immediate family through to cousins of mine that I had no idea were even keeping up with me on Facebook or reading my blog. My family has found ways to show support in the simplest of ways and even going above and beyond what I ever expected or could have hoped. For starters, my parents have spent the month wearing teal as often as possible...even if that meant my quirky father putting his T-shirt on backwards instead of just having my mom take a picture of his back.

Love her!

My mom has also made a point to share inspirational quotes, images and scleroderma facts on her Facebook page on a daily basis. She is becoming quite the advocate!

The second group of people that have wowed me with their support in my family has been my cousins. On both my mom and my dad's side, they have done everything from paint their nails, and wear teal at the gym, to waking up at the crack of dawn just to appear on the Today Show in the hopes of raising awareness. I feel so blessed to have this many people in my life helping me fight the good fight and doing so much just cause little ole me is chronically ill.

Daniela, Cinthia, Ailin, Iraida & Iris- THANK YOU!

Throughout the years these awesome ladies have participated in scleroderma walks with and for me, sent me love and flowers after hospital visits and flare ups, and are always praying for me and trying to find ways to brighten my days. I was so elated when I spotted Iris on the Today Show this morning, making noise, smiling and waving a sign on only 3 hours of sleep! You are a trooper cuz, and I love you for it!!

Over the years, I have learned that many patients diagnosed with a chronic illness often have to cut people out of their lives because they don't understand what they are going through, or they judge them or refuse to accept their condition and choose to live in denial. I can honestly say, that my experience has been the opposite. I have had such an outpouring of love and understanding come my way (slowly but it is growing as I educate people more and more) that I almost don't know how to handle it all. My friends and family may never truly understand what I've gone through our what lies ahead of me, but they sure as hell are doing their best to support me through it, and that's more than enough.

(Yes, I know I didn't mention the hubs...he's getting a post all to himself tomorrow- ya'll know I can't do this without him...so stay tuned!)

4. Friend Support
Finally, the outpouring of support that has come from my friends via social media has been awesome. Again, it has often been those individuals that I never would have suspected or didn't even realize were "following" me or reading my blog. I love that both men and women have rallied at different times this month to wear teal, share one of my memes, or comment on a blog post.

I may feel like a squeaky wheel sometimes, but I think it's finally paying off! So, to all my friends that made one small sacrifice to show your support, and hopefully shared why you were doing it with one other person- THANK YOU! Now, my world is a little brighter because one more person knows what scleroderma is thanks to your small effort, and in order for patients lives to be saved, better treatment found, and research money to be had- awareness is key.

Michelle, Angelie & Joe

This month is not over yet, but it's getting close. Just a couple more days. But just because we reach the end of June does not mean my (our your) work is done. I know I will continue to blog (as often as energy and time permit) and I will keep doing the work I am doing for the Scleroderma Foundation until they force me out.

I know many people who are silent and private about their illnesses, and that is their prerogative. I am not one of those people and I never will be. It is important to me to empower myself and others with knowledge and awareness. If we do not advocate for ourselves, no one else will and when you're dealing with apathetic doctors and nurses, a faulty medical system, and just straight up ignorant and rude ass people, YOU HAVE to care, you HAVE to be educated, and you HAVE to speak up for yourself.

I hope that through this process I have given someone (friend, family, patient or caregiver) the strength and the foresight to continue pushing through this terrible disease and moving forward towards living a better life.

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30 Ways to Help Spread Scleroderma Awareness

On Strength & Beauty

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It is now day 22 of National Scleroderma Awareness Month and we have but a week left until it is officially over. But for those of us living with this disease, our campaign to raise awareness and our struggle to overcome our daily challenges is never over. For many of us, the one thing that keeps us going (aside from our friends and family) is the work that we do to educate and inform others about this terrible disease. Because I am not the only one trying to raise awareness and because I have met so many other wonderful souls whose lights shine just as bright if not brighter than mine, I wanted to take some time during this month, to recognize those women that have inspired, educated, and informed me along the way with their incredible stories, triumphs, tribulations, and strength. After all, I am not alone, and it's not all about me.

Today's meme and post is dedicated to all my sclero sisters, many of whom may not always feel beautiful on the outside, but carry more beauty in their souls and hearts than most people I have ever met.

Scleroderma has its visible symptoms as well as its invisible ones. For a young female in her 20s-30s, the physical manifestations of scleroderma can be frightening, annoying, and depressing. Your lips grow smaller, your skin grows tighter (which at first makes you look RADIANT) and itchier, you may suffer from discoloration and telangiectasia (tiny red spots) on your face, arms, hands and neck. It can definitely begin to wreck havoc on your self-esteem and social life if you let it.

It is not easy to accept these changes at first, but those of us that understand that there is a greater purpose to all of this quickly realize that our beauty is more than skin deep. That our beauty lies in our strength, in our smile, in our souls, and in what we have to give. 

Although I have only met one of these ladies in person, they inspire me each and every day to push through the pain and let my light shine. See, I kept waiting for the darkness to go away until I realized there would always be darkness -but it was up to me to let my light shine through the darkness so that not only I could see, but so that others could see and experience the warmth that my light gives- these ladies have taught me how to do that. 

Jovana:

Jovana is one of the support group leaders for the Scleroderma Foundation San Antonio support group. I first met her last year at the Stepping Out to Cure Scleroderma Walk in San An. She and her group single-handedly managed to host the largest walk TX has seen in a while! There was a marching band, face painting, waffle breakfast, bouncy house, DJ, raffles and giveaways. It was quite a turnout and quite an event. 

Since then, we have connected via Facebook, at a patient education event, and at a recent fundraiser (again, another success!) in San An. In this small but tight knit scleroderma community, it doesn't take much to feel connected to other patients, and I can honestly say that although I don't know all of the details of her journey/story, we are sclero sisters. She is a kind and gentle soul with a very large and giving heart. Her work with the foundation is driven by passion and desire. I hope that as the years go by, I am able to give as much as she already has.

Here's her story as published in the March/April Scleroderma Foundation TX Bluebonnet Chapter Newsletter: 

"You have Scleroderma." At the age of 14 I had never even heard such a word. My symptoms of cold fingers and skin changes started the year before in which doctors kept saying to "stay warm" and "stay out of the sun." My mother knew there was more going on than just being cold. 

I was forced to quit playing softball and volleyball in high school because my hands were starting to stiffen up and curl in. My joints were inflamed, I wasn't able to swallow my food and it was difficult to walk. Soon after I couldn't even jog a few blocks due to the severe shortness of breath. When doctors realized the Scleroderma was causing fibrosis on my lungs, they immediately started me on several toxic drugs to try and slow down this progression. At the rate this was going I was told I wouldn't live past the age of 19.

Fast forward a years, after numerous hand surgeries, hospitalizations, and years of IV infusions my lung involvement was considered "stable". Or so we thought.

I was frustrated and angry with seeing every doctor in the book, being in every hospital, taking so many medications for this disease all to just be stable for short periods at a time. I just chose to live and cope the best way I could. I was getting married and had already had a son. My wonderful life seemed to distract my symptoms for some time.

Early 2007 was when I hit rock bottom. Getting around on mostly a wheelchair and on oxygen 24hrs a day, I didn't even look the same. I remember the look in my doctors face when he told me there wasn't anything left that he can think of to help with the lung involvement. I thought to myself "That isn't true!" I have my whole life ahead of me, all I prayed for was to be a mother and a wife.

I was sent to see Dr. Burt at Northwestern Memorial Hospital in Chicago. He was conducting a study using healthy stem cells that were showing to reverse or possibly pause the progression of Scleroderma. The study consisted of intense chemotherapy, injections, isolation, and an almost 3 month stay in the city.

I promised my son and my family that I would return home a healthier person. I kept that promise and just completed my final follow up visit this past November. Instead of my lungs being "stable" they have improved. I consider having Scleroderma a blessing to me. Despite enduring such pain and setbacks, I find joy and fulfillment in having met so many people in the past 17 years. With pain comes strength and I choose to LIVE my life one day at a time. I am now one of the support group leaders in San Antonio. I love our group so much, we are family and I wouldn't want anything different.

Jess:

Jess is a young lady from Florida that I met while simply searching the word "scleroderma" on Facebook. She and I have never met in person, but we exchange stories, health tips, and ideas via Facebook often. 

She is younger than I am, and has already done so much to raise awareness not only in her own

community but across the country as well. She has way more followers and "likes" than I ever will and her spirit, strength and tenacity shine through in everything she does. (And that's just from the pictures I've seen- can't wait to meet her in person one day!) From fundraising events with the Miami Dolphins, to making presentations and motivational speaking at health fairs and events, she inspires me to keep raising awareness on good days and bad days because if she can do it, then so can I.

She has overcome more obstacles in the last 6 years than most people her age will in a lifetime and she will continue to fight this battle, as she is now trying to raise money to undergo stem cell procedure to at least slow down the progression of the disease so she can continue living her life.

Here is her story via her website: Scleroderma Strong (see, how awesome she is, she even has a freaking website dedicated to her journey and raising awareness!!)

Tricia
And last, but definitely not least, my dear friend Tricia Moses. She and I were connected through my cousin Iraida who told me she had a coworker that was suffering from the same illness I was and wanted to connect with someone who understood what she was going through. Around 2009/2010 Tricia (who lived in NY at the time) and I connected via telephone and spoke for over an hour comparing symptoms, medicines, laughter and even a few tears. 

I immediately Facebooked her and we have remained connected ever since. Tricia's story is probably the most incredible of them all. She recently underwent a double lung transplant (yes, double) just to save her life. The fibrosis in her lungs had gotten so bad she was on an oxygen tank almost 24/7 and the meds were of no use. She first postponed the procedure to ensure her students did well on their state tests (oh, how us teachers will do anything for our kiddos), and then she had to wait several months before getting a donor. She finally did, and is steadily recovering. 

All the while, she posts daily inspirational quotes, takes amazingly cute selfies, and lifts me up when I'm feeling down and have no one else to turn to. 

Tricia also was nominated for and WON a Hometown Hero Award for the work she did in the classroom while battling this disease. (If that's not beautiful, I don't know what is) See the link and video below for more of Tricia's amazing story! 

Tricia's Scleroderma Story

What I love most about these ladies is that they don't sit around feeling sorry for themselves. Of course they have bad days. We all do. But they take what little energy and good humor they have and share it with others. They are more positive and full of life than most "normal" and "healthy" people because they know how lucky and blessed they are just to be alive.

What do YOU think of my sclero sisters? Please share your comments below!

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30 Ways to Help Spread Scleroderma Awareness

Little Happies

“They say a person needs just three things to be truly happy in this world: someone to love, something to do, and something to hope for.”
― Tom Bodett (Retweet This!)

Lupe- my someone to love/Writing- my something to do/
Awareness- my something to hope for

I have been meaning to write one of these "Little Happies" post for awhile now. Inspired by my faraway but close friend Steph (See her blog HERE), a little happies blog post is about sharing out on a few of the little things in life that bring you joy. In the midst of our daily struggles, constant disappointments and stressful times, it can be hard to find the joy. But, if we are to survive it all, we must. 

My hubs, Lupe keeps challenging me to create "more positive" memes and posts. So, in keeping with the Little Happies theme, today's meme attempts to capture some fast facts about scleroderma, that although may not seem outrightly positive to some, they are a part of what make up my "little happies" list for today.

1. I am happy to be a woman.

It's true, most auto-immune diseases predominantly effect women. That sucks. BUT, I am proud and happy to be one of those women. I didn't choose this life, it chose me but what I choose to do with the cards I've been dealt is up to me. And I have made it my mission to help empower, educate and inspire other women who may be going through what I've been through. 

In the last 2 years, close friends of mine have been diagnosed with other chronic illnesses. While this makes me terribly sad and angry, I now know why I was diagnosed when I was and what my purpose in their life is. These friends have come to me in confidence, in their time of need asking questions, seeking hope and trying to understand what is happening to them. I believe, that in some small way I have provided for them what no one was able to provide for me. A sense that they are NOT alone. That someone (their age) understands. That it CAN and WILL be ok. That they are stronger than they think. That what their feeling is normal. And that they still ARE in control. 

Me and my bestie Cam (MS Diagnosis 2013)

I am happy to have experienced what I have at such an early age to help be the strong and educated woman my friends and other women need me to be. (Just from these few blog posts this month, I have had other women young and old that I've never met reach out to me asking for help and telling me that I am inspiration). I want nothing more than to continue this journey empowering women who because of their illness feel helpless and isolated. 

I want to provide insight through my blog, I am working on starting a support group, and I want to provide workshops and information on feeling beautiful, productive and being healthy despite your diagnoses. I know I have my work cut out for me, but I know it is necessary, because if I don't do it, I'm not sure who will. 

2. I am happy to have great doctors treating me with the best medicine.

20-30 years ago, a scleroderma diagnoses was practically a death sentence. (#truth) Today, if caught early and treated aggressively, many scleroderma patients can expect to live a relatively normal life span. (Things get complicated for everyone as they get older) 

I am happy to have caught this disease early and to live in a city where some of the top scleroderma research is happening. (UT Physicians in Houston is second only to Johns Hopkins). 

While I don't always agree with my wonderful doctor, and while I challenge his decision to keep me on prednisone, I am blessed to have a doctor that listens to me and treats me with care. He calls me personally when I've been to the ER, he responds to my emails within a 24hr period, and more recently he has been a huge supporter of the Scleroderma Foundation and has offered to help wherever he can to reach out to patients and their families. 

When I read online posts sometimes about people who have been living with this disease for 10, 15, 20 years and they STILL have questions about some of the most basic symptoms or medicines, it simply boggles my mind and makes me angry that they have not been provided the best care. 

I know that I am spoiled living in Houston, I know that my diagnoses was caught very early (within the first year of presenting symptoms) and although it changed my life completely, it makes me happy that I didn't have to live in the dark, pulling at straws, trying to figure out what was wrong with me. 

3. I am happy to have "survived" the first 5 years of this disease. 

I am currently in year 7. The general prognosis of the disease can usually be determined within the first 5 years. If you have rapid progression of skin tightening and an onset of other symptoms the likelihood that you will development internal organ involvement increases. Internal organ involvement (kidneys and lungs) is potentially fatal. While I do believe that I had a rapid progression of skin tightening the first two years, I was blessed to be treated with some pretty "great" (even if potentially harmful) drugs. (See Little Happies 2 above). These drugs helped prevent fibrosis in my lungs from spreading, kept my hands from curling, and have maintained my kidney function relatively normal. 

I have also learned to do my part. I was and still strive to be as proactive as I can about staying healthy and physically active. I KNEW that if I just sat down and let this disease consume me, it would. When I have the energy, I move, I stretch, I walk, I use my God given talents to help others and work. Even when I was mostly bed-ridden and recovering from near heart failure (Lupus related not scleroderma related), I made sure to use my hands and my brain to write and finish my book. 

For me, survival has always been more than just "how are your organs doing?" For me, survival is about not giving up and not giving in. Knowing when to let go and let God and pushing through the pain because tomorrow is another day. All of that may seem contradictory to some, but there is a delicate balance that must be found when managing a chronic illness. You have to listen to your body and give your emotions the time and space they need. Feel what you need to feel, then let it go and live. 

I am happy that I have learned how to take care of my body in the last 7 years (some of it was definitely learned the hard way). I have survived both emotionally and physically some of the worst physical and emotional pain imaginable. But the lessons I have learned along the way, like the ability to find joy in life's simplest pleasures (the juiciness of a mango, hugging my mom, cuddling with my dog and hubby) will remain with me forever. 

4. I am happy to have many someones to love.

My hubby and I started dating only about a year and half before my diagnoses. When everything hit the fan and I got really depressed and fat as the symptoms started to progress, I told him he had every reason and right to leave me. If he left, there would be no resentment and no judgement. I would simply move back to San Antonio with my parents and figure it all out. I did not expect him to stick around and watch me waste away.

He told me he wasn't going anywhere. He said he loved me and was going to be with me no matter what. And to this day, he has been faithful to his word. 

Mom and Lupe (froyo- another little happy)

My hubby makes me happy when nothing else will. Knowing that I have him is the greatest blessing. I can't imagine going on this journey without him by my side. He is my someone to love, and every day and every passing moment, I love him more and more.

I am also happy to have both of my parents by my side. Always. Since diagnoses they have been to as many doctor's appointments, walks, fundraisers, and support group meetings as is feasibly possible given that they live 3.5 hrs away and have full time jobs and responsibilities. They love me unconditionally and I love them just as much. There is nothing I wouldn't do for them and vice versa. 

Sure, sometimes they drive me crazy. (But parents are supposed to) They love me and they just want me to "get better." But truth is, in many ways, I AM better. I am a better me than I was before diagnoses. I am kinder now. I am less selfish. I show the ones I love that I love them and I say it on a daily basis. There's nothing that makes me happier than being around the ones I love. 

5. I am happy to have many somethings to do.

Not only have I been blessed to find a job that I love working from home, but I have also managed to keep myself very busy with my writing and outreach/volunteer work. 

When you're chronically ill and spend weeks at a time when you feel helpless and useless because all your body can do is feel pain, it's easy to get to a dark place. But it's important to find things you CAN do, and do them with all your heart. 

Taking care of my body is a full time job. I have to be cognizant of what I eat. When I take my meds. What doctor I have to see. What tests I need run. And on and on.

All these health related tasks are exhausting and often feel unrewarding. We think: "There has to be more to life than THIS." And there IS. But it is up to each one of us to find it.

"The trouble with always trying to preserve the health of the body is that it is so difficult to do without destroying the health of the mind."
-Gilbert K. Chesterton (Retweet This!)

I keep my mind from wandering by working on curriculum projects for my job. I keep my emotions in check by writing this blog and finding time to write poetry, see plays, and read books. I keep my spirit full by volunteering with the Scleroderma and Lupus Foundations and raising awareness and connecting with other patients. Doing these things makes me happy and gives my life meaning and purpose, especially when it feels like my aching body can do nothing.
 

I love that I can make a difference from the comforts of my couch. (GOD BLESS THE INTERNET!) I raise awareness, create newsletters, build online courses, connect with others through social media, and write my woes away without exerting a lot of energy. And that way, I can use the energy I saved for other little happies like movie night with the hubs, girl's day by the pool, or mani/pedis with mom. 

6. I am happy I have many somethings to hope for. 

I will be brutally honest here, (and many of you will cringe and scream when you read this) I don't hope for a cure. I don't. Einsten once said: "Insanity is doing the same thing over and over again and expecting different results." This is how I feel about laundry, the dishes, and scleroderma. 

I will drive myself crazy reading every article, looking up research data, and taking my meds in the hopes of a cure. Instead, I hope to raise awareness so more people, doctors and nurses included can know as much as I do about this disease so they can provide me with the best care. I hope for more effective medicines with less side effects so I can manage my symptoms and live a productive life. I hope for more people to understand and show compassion for those living with invisible and chronic illness. I hope that the stigma and shame that comes with living with these diseases at a young age will one day cease. 

That is what I hope for. Because these are the things I can do something about. If a cure comes in my lifetime (and the side effects aren't brutal) then sure, sign me up. But am I counting on it? No. Am I living my life praying for it? No. (My prayers are better spent on other things)

 

Honestly, I don't know if I want or need a cure. We're ALL suffering from something, and not all of it can be cured. But we CAN be at peace with it. We can find acceptance with what ails us. That, to me, is more significant than a cure. 

I don't want my "life" back, because the life I have now has been more blessed in the last 7 years than I ever thought possible. (I published a book for crying out loud! Something I would not have had the courage, time or confidence to do if I had been healthy) 

So, what are YOUR little happies? Share in the comments below!

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30 Ways to Help Spread Scleroderma Awareness

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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30 Ways to Help Spread Scleroderma Awareness

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