Mary Poppins Rocks Her Louis Vuitton - Health Blog Challenge: Day 7
/So it is Day 7 of the National Health Blog Month Challenge and I am almost too many minutes close to midnight too late to do it, but at least I'm in!! Today's topic we have to write about what is in our bag everyday and why!
Soo, this is my Louis Vuitton bag that I carry everyday...I'm not into name brands especially trendy ones, but this was a gift for my 28th birthday and I just can't find a purse I'd rather carry. It fits me because I have not seen anyone else carrying it. I like standing apart :D Moving on to the contents, which are no where NEAR as glamorous as a Louis...
I will just focus on three things out of this sea of gum, makeup, tissues, candy and change; that I carry everyday.
1 - My agenda. (Yellow circle). I carry this everyday because when I get asked to speak, or if I'm going to a conference, or if my daughter's leadership team is available to volunteer at a walk-a-thon, I want to be able to say yes, with confidence. I know I can put all this information in my phone, but sometimes I need to see my handwriting, ink on paper, and turn pages for it to embed itself in my mind. It's like a security blanket for my memory.
2 - My backup stash of pills (Green circle). I carry these because there are some days I don't make it home in time to take my meds before I go to sleep. I'm on my treatment once a day and the best time of day for me to remember is before I go to sleep. There are times I am out late and too tired when I come, so I keep them in my purse. Plus, when I travel and my luggage is ever lost (knock on wood), then I won't have to worry about missing a dose.
3 - Scripture cards (Red circle). I carry these to help me stay encouraged. They are actually scriptures based on healing. Plus, I have a hard time memorizing scriptures. It is easier for me to tell stories but there are some that have nothing to do with a painted picture, it will be a set of instructions. I carry these cards as a memory tool and to help encourage others I meet throughout my day.
*pulls random card from box* Matthew 4:23-24 "And Jesus went about all Galilee, teaching...and preaching the gospel of the kingdom, and healing all manner of sickness and all manner of disease among the people..The brought unto him all sick people that were taken with divers diseases and torments, and those which were possessed with devils, and those which were lunatick, and those that had the palsy; and he healed them."
So in a sense, my bag is like Mary Poppins in that I have a teaspoon of sugar for my mind, body and soul.
You have some AIDS in your hair! Say WHAT? Health Blog Challenge - Day 6
/Say WHAT?!What’s the most ridiculous thing you’ve heard about your health condition? Was there any context? What did you think at the time you heard it – and what do you think of it now?
Being HIV positive, I try not to be offended by myths, but it's hard. Growing up I've always heard I have "good hair", and now that I'm natural, people are baffled that I still have "good hair". Really? PLEASE. Hair is hair and usually if someone with HIV/AIDS is losing their hair it's because of the various treatments they have been on or other health ailments that their immune system is fighting in addition to the virus.
Thanks to media and Hollywood, the portrayal of HIV/AIDS infection is diluted to generic symptoms which isn't their fault because if you exhibit any immediate symptoms after infection, they are very similar to the flu or a bladder infection (which was my case). This baffles me because regardless of the HIV NOT being transmitted through coughing, sneezing, holding hands, using the bathroom after someone, using the same eating utensils, or swimming with - the concern for someone coughing severely should be addressed because of the flu which there is actually a vaccine for. When the Swine Flu came about everyone lost their minds wearing masks and drowning in hand sanitizer. With reason. But when public health officials tell you that all you have to do is abstain or wear a condom to prevent the transmission of HIV/AIDS people don't want to do it.
I'm thankful to those out there willing to admit that they didn't realize what they believed was false and I'm thankful to those out there that are educating themselves so that they can educate others. I'm grateful for my life in light of my infection 11 years ago because it has opened my eyes to the limits people put on themselves regarding their own health and the responsibility of maintaining it.
Embraced at USCA: Living Beyond the Quilts (an emPOWERed series)
/So, now I'm home. I'm back in my community, my routine, my environment. What can I filter from USCA that will live and grow where I am now? How can I keep that energy I felt alive?
Well, let me share a four-part series with you on what I experienced. That's the first step. If I keep it all to myself, I'm not doing anyone any good.
**UPDATE - Those who know me, know that I write a LOT. The three remaining posts of this series are way overdue and are still a work in progress as I learn more and more that is attached to this initial experience. Please bear with me. All three of you! LOL**
A little history to how I became able to be at this year's conference. I was a part of an NMAC (National Minority AIDS Council -the sponsoring agency for the conference), work group for PLWH (People Living with HIV) Leadership. There were other groups that were focused on content, social determinants and policy.We were flown to Washington for a meeting where we basically brainstormed on modernizing the Denver Principles of 1983 (used as framework - not to change it). The Denver Principles has been termed as the "Declaration of Independence" of AIDS and was presented during a gay and lesbian conference held in Denver by a handful of activists living with AIDS. Thirty years and many advances later, it was time to make some amendments that reflected these advances and changes. This was exciting for me and my glimpse into how much I didn't know of my HIV history. How could I begin to appreciate a life without HIV if I never understood what it was really like when it first came about? I knew what "text books" said, but I had never taken the time to really talk with the people that were still here and still thriving, to get a better understanding.
You're probably wondering why I didn't. Well, it had to do, like for many of us, with my personal encounters,when I was first diagnosed. I remember searching for a support group, someplace where I could be with people who understood my confusion, depression and feed into the ounce of hope I had for a life worth living. A health department employee took me to such meeting. At least that's what I thought. I walk in this room, it's full of Gay. White. Men. And they were angry. Very angry. Not at me, but with their situation living in Polk County as well as the the lack of medical care and support they were receiving. I was stunned. There was no hope in this room. There was no one who looked like me. There was no one willing or able to pull me aside and let me know I wasn't alone because they already felt alone in their own circumstances. I left and never returned. Not because they were White. Not because they were Gay and not because they were Men. I felt I didn't have a place among them. I was terrified because I didn't want to be in their situation. These men looked sick in their weariness. While I wasn't happy to be HIV positive, I didn't want to be in an emotional or physical state that welcomed AIDS either.
That experience haunted me, so much that I found comfort in being planted in the Black Woman from the South niche. While it is valid as it makes me relate-able to the faces that need someone to look to, I allowed it to hinder my growth as an advocate. Inwardly, I was becoming just like the men that were living in their moment in that support group. And I didn't even know it.
I didn't know until I sat in a room in D.C. with long-time survivors that it was time for a breakthrough. I viewed working on the blueprint of the Denver Principles as a historic moment. Just as historic as the Supreme Court overturning DOMA the same exact day. Of the two events, I want the world to remember that while we were defining our HIV/AIDS community and its needs, a momentous decision was made that only drove home the importance that after all is said and done...WE, the People...MATTER!
Having a voice at the table with history makers, people who had experiences that could add to mine, people who had to figure out what worked to survive because they had no choice. Today, in 2013, people newly diagnosed with HIV have a choice. It's not about the struggle to stay alive anymore because people are living longer and fuller lives everyday thanks to the treatments available. Now, it's about challenging individuals to shed the stigmas that we have against one another so it's the struggle to live...live a life without judgment or persecution because of an HIV status.
Here at this conference, among these survivors, I found myself sitting on a goldmine of life affirming experiences and my eyes were opened. I could see beyond my intimidation and embrace their perspective on these experiences.
On leaving that meeting and for the next few weeks I was torn in my emotions. I didn't understand why I was being allowed to be at the table. I was conflicted because I felt there were individuals there younger than me that were representing issues and a generation that I didn't recognize. It was when I arrived at the conference, the experience became more clear. The haunting of my experience in that support group had vanished. I stepped outside my comfort zone, my target population mentality and I focused on what was bringing us all to this conference. We had worked together, we shared and through that I finally felt like I had a place.
So I found myself presenting "The Blueprint: A Treatment Education Agenda for the 21st Century" with a panel of individuals that I admired, who ranged from long time survivors to newly diagnosed. "I" was the missing component, that intimidating factor; as a person who is neither newly diagnosed but not quite yet a long-term survivor. I knew how it felt to be newly diagnosed, but my missing part was what I needed to close the gap between the generations and culture divides. I found that the people whose mentoring I needed, those long-term survivors who were either too busy, too sick, too jaded had been there all along, but…one in particular had embraced me from the first moment I disclosed my status. I suddenly saw him in a whole different light. I wanted to hear his story, I wanted him to explain phrases and terms and things to me that I used to allow to go over my head because it didn't fit my experience.
I have to change that and it starts today, with this blog. If I truly want to be a part of this fight to end AIDS, I have to truly embrace how the fight began and all of its contributing factors, celebrate the lives that were involved along the way and unwrap myself from my safety net that separates me from others that are free diving into this thing and not looking back.
USCA Day 1, was my deciding moment, it's not too late to find yours.
Dedicated to Ron Hudson - my fabulous big brother, living positive for 30+ years and being a positive influence in my life since day one of my journey. I love you Ron.
The Phoenix and an Elephant had a Baby
/One thing was not meant to be related in context of fear, but it's how I applied it due to what I'm going through in my heart right now.
When we ask God to order our steps, we want the entire blue print to what He's doing. We want to see the whole picture (mostly because if He sends us to the Red Sea, we're pretty much going to tell Him we'll pass). The key to this prayer to God for Him to order our steps is SURRENDER. He can't order our steps if we don't want to move and take that first step without seeing where we're going. We have to have faith to walk out and trust that if He ordered the first step, He will guide us on the rest of the path.
The second thing that changed me that night was that what keeps us from really doing the first thing that I mentioned was fear. Our fear sometimes gets settled on this critical inward thinking that we tend to do in life. We tend to remember what we should forget and forget what we should remember. We focus on many of our failures and forget how we overcame them. If we reversed that, we'd be some righteously confident individuals conquering injustices and inequalities all the live long day.
Linking to the World
/Anyone who says "If it ain't broke, don't fix it", really needs to get out more and probably doesn't have a LinkedIn or an about.me account. I've never been one to actually say those things, but I have been a person who would easily get comfortable with what I liked to do in social media or how I wanted to present myself in a professional manner. A resume, some nice business cards and an email address were the standards. A website was a luxurious bonus in my creative eyes. Unable to decide on how I wanted things to flow from page to page for a website, I'd grow frustrated and end up with nothing. Something was broken and it was beyond time to fix it.
| about.me site |
| LinkedIn site |
Oh and a Twitter account helps too. I would add Faecbook because it's popular and easily accessible as well but personally, all the different Facebook pages can be a little overwhelming to not overlap personal interests with things similar to your field of expertise. For me, at least. So, in mending things that tend to be broken, I pray I am on the right path. I don't do the work that I do for the glory whatsoever. HIV/AIDS consulting chose me and I surrendered to it's call because there are people in this world that are sitting in a dark place, wishing there was someone that they could relate to, someone who's been in their shoes. For them, I keep pushing to spread the message of hope, inspiration, and victory in eliminating stigma, access to care for all People living with HIV/AIDS and for the cure. It's coming and I believe it will be in my lifetime. Until then, I will keep mending me so that the message is heard loud and clear on all four corners of the earth.
Heart Transplant
/What makes what my friend said to me so astounding was that even before I posted that video, I posted a status update on Facebook that I don't believe she had read because we've just recently added eachother on Facebook:
Looking Back...Happy New Year
/As I spend my first year home from church on New Year's Eve (I'm sorry Granny), I am actually pleased with my own meditations and prayers that have been placed on my heart. Though I embrace these everyday, I find it a blessing to let them saturate my spirit collectively going into 2011.
I pray earnesty for a new heart on a everyday basis because from the time I get up to the time I lay my head down, the world throws so many opportunities at me to cling to the old, hurtful, dark me. I can no longer be that creature as I rest in how far God has brought me not just this year, but from the moment I learned of this world.
Ezekiel 36:25-27And in looking back, I cast many thanks to what God has delivered me from. As I tell people often, I know that God allowed me to find out my HIV status the way I did, when I did for a reason and I am forever thankful for it. No one knows the path of destruction I was willingly headed towards because of my pains and insecurities. No one knows how far from God I was but He and I. The fact that He is a merciful, loving, forgiving God brings me so much joy that I cannot wait to give thanks when my eyes open each morning. That's His way of saying, "I still have work for you to do" and looking back at but not holding on to those fears and pains, propels me forward. If He's done this much for my life and I've been screwing up the past 20 something years, I can't imagine what He could do through me for my remaining!!
25 I will sprinkle clean water on you, and you will be clean; I will cleanse you from all your impurities and from all your idols. 26 I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh. 27 And I will put my Spirit in you and move you to follow my decrees and be careful to keep my laws.
Philippians 3:13-14 (King James Version)
13Brethren, I count not myself to have apprehended: but this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before, 14I press toward the mark for the prize of the high calling of God in Christ Jesus.
I sometimes beat myself up for not doing things my parents wanted me to do; telling myself that my life would be "better", forgetting that all things happen for a reason. At 28, I truly feel like I am living life the way I am supposed to. I feel as though the past ten years I have been in a deep sleep and God has awakened me to start fresh, get it right and break free of any strongholds that I held on to as a teen. All the pains I've caused, all the hurts that have been dealt my way I still give God the glory because if they didn't happen, would I honestly take the time to reach out to God? I'd be deadlocked with my left hand raised and my right hand out "claiming my blessing" as though He owes me. Nothing that passes me by from day to day really has anything to do with me and for that I'm thankful. If it was all about me and I summed up the past 28 years...I'm not saying much! But because I know HE has a purpose for me to bring others to Him, I choose to be the willing vessel.
Hebrews 12:10-11In closing...(this far I'm pretty proud my thoughts haven't rambled off!!) I will not waste my days looking at what the next person has or even what the next person's goals are. Just because someone is successful doesn't mean they are living with purpose. I couldn't imagine going through this life making decisions that led to an ultimate dead end where only I prospered and only I reaped benefits. Even when I'm not "doing anything", I'm actively pursuing God's will. And if that means to simply sit still and wait for further instructions, so be it.
Our fathers disciplined us for a little while as they thought best; but God disciplines us for our good, that we may share in his holiness. No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it.
Psalm 37:7
Be still in the presence of the LORD, and wait patiently for him to act. Don't worry about evil people who prosper or fret about their wicked schemes. (NLT)Isaiah 40:31
Yet those who wait for the LORD will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary. (NASB)
And I waited and was strengthened. I've soared and I've ran. I will continue to walk with God as my guide and will not grow weary. In Jesus' name. Amen.
Life's A Banquet...
/My introduction cannot do her justice to describe just what has defined her in life, what has sustained her character and built her smile but know that once you get to know her and the fibers that weave into her the patches of survivor, beauty, restoration, wife, fighter, mother and advocate you will embrace her quirky sass and feel right at home. Please welcome her to my blog, (which is an honor more than I can express) and allow her to share with you her beautiful family and her story of life lived golden. Enjoy.
Whenever my daughter talks about my cancer, she tells people something that they can't believe. She says in her most matter-of-fact tone, "I saved my mommy's life." She doesn't even hesitate. It's as easy for her to say as saying she's hungry. That's because it's true. Of course, people have to ask why and I never mind telling the story behind how Lily was my hero through the darkest time in my life.
I waited a long time to get pregnant. My husband Cameron and I didn't want to have a baby right away. We had a lot going on and it wasn't the right time. Well, it finally was the right time. We waited three months before we got the news that I was pregnant. I had a very smooth pregnancy, and I was excited each and every day to be closer to meeting my baby girl. There were so many questions going through my head. I thought about what my mom was like and what I would be like, as well as what she was going to like. I figured out early that I just wanted to be good mom no matter what.
While the pregnancy was really easy, delivery became a little more difficult. Lily was a breech baby, and I needed to have an emergency C-section. At least I knew she would have a round head. I was always looking for the funnier side of things. However, nothing compared to that moment of holding Lily for the first time. She was an amazing little bundle of joy. With her bright eyes and wiggling limbs, she immediately stole my heart. It was a blissful day and something I'll never forget. I never imagined that my happiness could be stolen in another way just a few months later.
About three and a half months later, I received the news that I had malignant pleural mesothelioma. In addition, the doctor also informed me that I only had 15 months to live if I didn't start treatment soon. That was a wake up call after I fell completely silent. I was just numb and unable to really comprehend what was happening. I'm so grateful that Cameron was with me to help figure out treatment options. I knew that I had to have surgery and that we needed a specialist doctor who had a high success rate for mesothelioma survivors. We found a specialist on the East Coast in Boston who was going to save my life.
Being a new mother was difficult but having cancer and also dealing with a newborn became too much. Still, I made myself take care of her as much as I could before I went in for surgery. That following February I went in for major surgery that removed one of my lungs, part of my chest lining, heart lining and diaphragm. I knew that I had to make sacrifices, but I never expected to be away from Lily for so long. I spent over two weeks in the hospital recovering from the surgery before I had some down time until chemotherapy and radiation. I went through it knowing that there was a little girl who needed me to be there for many years. I wasn't going to give up despite everything that I had to go through.
When I look back on everything that I went through with mesothelioma, it was a trial that I had to go through to be a tougher person and mother. I have always looked on the bright side of things. My humor has been the reason that I am able to get through many things, but it was Lily who really pulled me through this dark time. I'll never forget all of the pain but when I thought things were at their worst, I only needed to think of Lily and I was happy. I drew strength from her. Mesothelioma usually takes about 95 percent of the people who are diagnosed, and I had survived. That made me really believe that Lily was the hero of the tale.
I can't forget about those people who were also there for me during this time. My husband was a rock and still is the best man I know. My parents were there for me through it all, offering child care for Lily and giving me a place to recover after major surgery. Friends, family and people we didn't even know reached out to help my family. Today I'm cancer-free and so happy to be the mother of a beautiful and intelligent little girl. So when she says, "I saved my mommy's life," I know exactly what she means and how right she is. I don't think I would have made it without her.
So, now that you've gotten to hear Heather's story and you want to learn more (you know you do), please visit the Mesothelioma Cancer Alliance site (it will open in a new window) and share this information plus Heather's story. Also, it's Global Asbestos Awareness Week! There is GREAT information provided on both sites and you know you can take my word for it because I am an information junkie. Once you know better, you do better!
And if you're wondering where that "quirky sass" is I spoke of or if her daughter inherited it...well, just take a look for yourself. One beautiful rockstar family!



