Wednesday, June 18, 2014

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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  1. you make me fall in love with you more and more, every day. punk.