Thursday, May 14, 2015

Put On Purple!

The first step toward change is awareness. The second step is acceptance.
- Nathaniel Branden

Lupus Walk May 2014
May is Lupus Awareness Month! Yay for awareness! I haven't done as much as I wanted to on this blog with Lupus Awareness Month, but something is better than nothing. So, I figured I'd start with National Put on Purple Day, which is May 15th. And, in case you can't tell, putting on purple is easy and fun for me to do since clearly, I love the color purple. (No pun intended Lupe) 

For those of you that are unsure, or unclear as to why I "celebrate" put on purple day and Lupus Awareness Month, please be advised of the following:

1. I have Lupus. (shocker)
2. My Tia Morena passed away from complications with her Lupus
3. My Tia Daveyba also lives with Lupus
4. Lupus sucks and we need to raise awareness. 

Although I started this blog many moons ago to cope with what Scleroderma was doing to my body and my life, over the last few years, my body has also decided that it wants to take on the challenge of living with I am. Raising awareness not just for sclero, but for Lupus as well. I am a woman of many talents. 

Me & My Boo at the Lupus Walk May 2014
Today, I just want to share 15 fast facts about Lupus that I think you need to know to put this all in perspective: *For more facts visit Lupus Foundation of America- All information below is from the Lupus Foundation of America

1. Lupus is an unpredictable, chronic autoimmune disease that ravages different parts of the body.

2. In lupus, something goes wrong with the immune system, the part of the body that fights off viruses, bacteria, and germs. The result is the production of autoantibodies that cause inflammation.

3. Ninety percent of the people who develop lupus are women, though men can also develop lupus and their disease can affect some organs more severely.

4. Most often, lupus develops between ages 15 and 44. However, between 10 and 20 percent of cases develop during childhood and these cases can evolve into serious health complications more rapidly.

5. African Americans, Hispanics/Latinos, Asians and Pacific Islanders, and Native Americans are diagnosed with lupus two or three times more frequently than Caucasians; however, lupus affects people of all races and ethnicities.

 6. Lupus is not contagious and cannot be “given” to another person.

 7. To make a lupus diagnosis, doctors evaluate a patient’s current symptoms, lab test results, personal medical history and family medical history.

 8. Lupus can affect any organ system of the body, including the heart, kidneys, lungs, blood, joints and skin.

 9. The malar, or “butterfly” rash on the face is present in an estimated one-third of people with lupus. This flat, reddish rash across the bridge of the nose and cheeks often is the only outward symptom of lupus (though other signs and symptoms might be present).

10. Though all pregnancies of women with lupus are considered “high risk”, advancing technology and a better understanding of the disease have improved pregnancy outcomes. Today, 80 percent of women with lupus symptoms that are not active can have successful pregnancies.

11. Lupus is not a form of arthritis, but many people with lupus do suffer from joint and/or muscle pain

12. Among people with lupus that affects the skin, poor mental health is common and has been found to be similar or worse than mental health among those with type 2 diabetes, recent heart attack, heart failure and high blood pressure.

13. People with lupus have two times the risk of developing cardiovascular disease than do people without lupus.

14. Nearly 3 in 4 people with lupus surveyed (76 percent) said fatigue limits their ability to participate in social activities.

15. An estimated 1.5 million Americans and 5 million people worldwide are living with lupus.
Mami and Me @ Lupus Walk May 2014
I am one of those 1.5 million, and there is probably at least one other person in your circle of family and friends that is also living with this disease and you just don't know it...and maybe they don't know it yet either. 

It's not an easy disease to live with and manage. It's always surprising me. I've often said that I feel it's worse than scleroderma- only because sclero never attacked my internal organs and that's all Lupus seems to want to do. I  know both are devastating in their own ways, and I am trying to learn to  just be an observer, to live with these illnesses with non-judgement but I am a work in progress. 

Lupus has taught me to be patient with myself and others. To take nothing for granted and to live with purpose. To acknowledge that my body and my mind has limitations and to be ok with that. And to treat others kindly because you never know what secret battles they are facing. 

I also know, that I inted to continue spreading awareness, sharing my story so others feel less alone, and to continue tackling  all of it with humor, passion and grace. 

If you put on purple on May 15th, please snap a selfie and share it with me here or on Facebook/Twitter!!!

(Next on the blog...My Lupus Journey and The Spoon Theory..stay tuned!) 

Saturday, May 9, 2015

Silence Is Golden

Surfside Beach, TX (Silent Yoga Retreat)
The picture on the left is what I woke up to on Saturday morning at Surfside Beach on the first full day of my silent yoga retreat. I spent the first part of the morning meditating, mainly because I hadn't really slept the night before (thank you again chronic pleurisy), so I was in quite a relaxed and vulnerable state when I walked out on the deck and saw this. I was immediately overwhelmed with emotion and I actually began to cry. It was so bizarre but I couldn't help myself. I was in awe of all the beauty that was before me, and so...I snuck my phone (we had to keep them in a box for the weekend) and took a few pictures to capture the moment. It is something I will always remember and cherish, feeling so overwhelmed with emotion by mother nature. It really set the tone for the rest of the weekend, and I can honestly say I came out the other end of this retreat a renewed and transformed individual. (Not. Exaggerating.)

I really enjoyed the first yoga retreat I went on in November, which focused on gratitude and I really wanted to challenge myself so I decided (rather on a whim) to do this for myself and for all the lingering questions I still had hanging around. I was hoping to gain some peace and perspective on it all, and I did.

For starters, we stayed in this amazingly lovely beach house with all the amenities and yummy vegan and gluten free food you could ever want cooked by some really talented chefs.

I spent a lot of time on the deck and on those comfy couches reading and writing my thoughts. I wanted to spend more time on the beach and in the water, but alas, my Lupus and my meds kept me from doing so. (I didn't want to risk a flare up due to over sun exposure- so I covered up from head to toe and spent only about 30 min by the water, but it was really nice).

So, what was the premise of the silent yoga retreat?

1. Spend time in silence to quiet and calm the mind.
2. Practice yoga and meditation to quiet and calm the mind, body and spirit.
3. Learn about using conscious language- "Language builds the house we live in"
4. Read Deepak Chopra's The Seven Spiritual Laws of Success (highly recommended)

What did I get out of it?

1. The ending to memoir # 2 was revealed to me! It was hard to shut my mind off, as it got really really loud at first(in my head). But eventually I was able to focus on what my mind was telling me and I knew how it had to end. I let my mind wander at first, and I doubted myself, but eventually the "why" of why it had to end the way it's going to made sense.

2. I was able to spend some time creating a list of things I still want to do that don't involve having children. I felt I needed to do this in order to prove to myself that I have a lot of things to look forward to. A lot of life yet to live, and I shouldn't let fertility or infertility define me or my quality of life.

3. A shift in perspective. For the longest time, I have been using language to creat a very negative and destructive "house." I am making a conscious effort to change that. (You may have noticed that my FB presence is quite minimal these days). So a part of it involves changing my daily affirmations and goals. Instead of saying things like:
"I hope I get better"
"I hope this medicine works"
"I hope I can get pregnant"

I have changed my language to:
"I trust I will get better"
"I trust this medicine will work"
"I trust I will get pregnant"

This subtle shift in language and in my daily affirmations has already made me feel so empowered. I've moved from wishful thinking with a cloud of doubt to positive expectation with a side of confidence.

4. The only way to move forward is to make amends with your past. I had a very tender moment on the last day with one of the yoga teachers. We were discussing whether or not I should do yoga teacher training, and she was encouraging me to go for it. At the end of our conversation she asked me to repeat the phrase: My only security is shining. And as soon as I opened my mouth to say them, I burst into tears. I don't know what it was about those words that made me so emotional, but it was probably one of the hardest things I've ever had to say out loud.

I realized that the only way I was going to "shine" is if I let go of all my old baggage. If I came to terms with my past, spoke the truth about the mistakes I had made, and began the process of forgiving myself in order to heal.

It was a difficult process, and I  still have a ways to go, but I am in a much better place now that I have begun the journey.

5. I want to plan and coordinate a Writer's Retreat for Texas writers next summer that will involve
writing, meditation, workshops, fun, food and laughter. Lupe said he is ready to do it with me and as soon as the fall rolls around, I want to start planning it. This silent retreat was so beneficial to me that I just want to share the love and I think writers could really benefit from this. I am super excited about the possibilities! Stay tuned writer friends, Mendez Writing Workshop Weekend coming your way in 2016!!

This yoga retreat was everything I needed and more. It forced me to face things I've been too afraid to and it gave me the space and time and quietness I needed to finally listen to the things I had been trying to silence.

I know there's still a lot more work that I have to do on myself so that my light continues to shine brighter and brighter, but I'm learning to take it one step at a time.

Managing and living with chronic illness is going to be a lifelong battle. But that doesn't mean I can't win. And for me, winning doesn't neccessarily mean a cure, or remission or having more good days than bad (which I also learned we shouldn't label things good or bad, since again this is language, rather we should just observe what happens with non-judgement), but rather winning for me, is about learning to shine despite the pain and flare ups.

Shining, even if dully, when everything hurts.
Shining when I'd rather stay in bed.
Shining for others when it's hard to do so for myself
Shining because I want to.
Shining because I can.

That, for me, is a win.