Tuesday, November 17, 2015

Day 1, The Journey to Rewriting the Rules on Digestive Health

So shortly after this video on November 13th, I successfully acquired proper referral to Gastroenterology for possible future screening colonoscopy. I've followed state protocol while living on disability, and now the date has been set to finally meet my digestive health doctor on December 10th, 11:30am. 

I'm not nervous at all, as I know I'm doing the right thing in pursuing this far more sooner than when it's potentially "too late." Given the family medical history of colon cancer on my mother's side, and my long HIV-positive status, it's vital that no risks be taken. We only have one life to live, and by screening early, I'm hopeful of establishing a baseline reference point for the future of my own digestive health. 

So after December 10th, I will follow up with my online blogging family, and let everyone the outcome of my first visit. Will they do scans? Schedule a colonoscopy? That's the game plan at least. I truly and sincerely hope by doing this important decision, that someone is paying attention to this and through my case, the rule book can be rewritten for those living with Hemophilia, HIV, Hepatitis C, or all three. If you know someone that needs to read this, please share my web site link, as I want everyone to follow my progress during this time. Your prayers and continued support are greatly appreciated. 

Thursday, November 12, 2015

The Road to Digestive Health & Prevention Among HIV, HCV & Hemophiliacs

Let me open this post with some very important information regarding long diagnosis' with HIV. I come from a large family of hemophiliacs, 6 male cousins of mine in total all were born with the genetic blood disorder. 2 have passed over the years from complications relating to HIV/AIDS. Recently, I was informed one of my male cousins has been battling colon cancer for some time, and is now facing lymphoma as well. The culprit? HIV.

We now have ways to stop the virus from replicating it's RNA and progressing to AIDS. Thanks to recent advances in the past 10 years of cART (combination antiretroviral therapy), we can now prolong the lives of HIV patieivets many, many decades if compliance in drug therapies are sustained. But now, the biggest statistic resulting from prolonged HIV infection are various forms of anal, colon, lung, cervical, prostate, breast cancer (among others) are now the leading cause if morbidity and mortality among patients.

Over the next few months, I'm going to tear down some walls, and open the veil of transparency in my life. The recommendation for a colonoscopy is at age 40. But I'm willing to change the rule book for Hemophiliacs, HIV and Hepatitis C patients, and see if we can initiate new standards of preventive care by 35. The quicker we establish a baseline of our digestive health, the better off we are.

With the recent news of my family member's diagnosis, I'm carrying the torch into uncharted ground and posting everything that happens here on my blog. Triumph. Discouragement. Headache. Insurance. All will be brought to the limelight here on my site as my journey to obtain a colonoscopy by age 35 gets under way. The next few months are going to be a bumpy ride I'm sure, but be praying for me during this time that we get answers, good results and change the standards among Hemophiliacs, HIV, Hepatitis C and co-infected patients. It all starts tomorrow morning, 9:45AM, with a visit to my primary care doctor to obtain a referral needed to see a gastroenterology specialist and hopefully get a screening scheduled.

Sunday, November 8, 2015

5 Rules To Finding True Love Despite Chronic Illness

It's hard enough going through life with some small sense of normality, but walking down the pathway of life with a chronic illness can be enough to make one's head swim with anxiety. One of the biggest things I hear not only as a care counselor in church, but a leader among my church's life groups and outspoken advocate of the hemophilia and HIV community is that people simply want to be loved. Being alone and with a bleeding disorder, HIV or both is enough to make some not even chase the dating game, or detour them altogether from discovering the great, "what if's" of life.

To be honest, it's not easy being in your 20's, 30's or 40's - living life single and alone. Compound that with living HIV positive, while attempting to find your soul mate, it can be a towering behemoth most would flee from. Finding someone who is "in the know" can be rare, much less finding a partner educated enough to understand your disease, rather than run from it. HIV is a big deal, and it impacts everyone around you from family, friends and dating.

This list may not translate to every single person living with HIV, Hemophilia or Hepatitis C, but contains enough of foundation to get you started in the right direction for true love. Often times, the biggest hurdle we have to face isn't dating itself, it's our own reflection looking back at us. Once we conquer the skewed image we have of ourselves, and truly realize our worth, we can become empowered not only to find true love, but change the lives of everyone around is.
  1. Circle of Trust - Friends are a precious commodity this day and age, and it's vital that we surround ourselves with friends who are educated, in the know, and will be there for you to love, comfort and listen when you need it most. A great group of friends not only provides a solid foundation, but also helps us launch into new and otherwise uncharted areas. They encourage us, motivate us, and make us feel wanted; that's important for self esteem. Friends also help us stay accountable, socially aware and are constantly engaged in conversations and real life situations. Remove toxic friends, and find ones that elevate your spirits to new horizons.
  2. Don't Believe the Naysayers - One rule of thumb I always encourage people to take to heart is, "you are NOT your disease!" Many of us have been told lie after lie, that we're not good enough, it's pointless, and we're just going to get our hearts shattered. Don't be bound by being a mere label, rather, be an impact on someone's life. Stop listening to the grumpy people who try to dictate what they think is best for you, and start empowering yourself to take a chance every once in a while. If you're true to yourself, people will naturally gravitate towards you, and the naysayers will fade away like yesterday's celebrity gossip column.

  3. Stop... Breath... Focus - If we concentrate all our efforts on this one thing, to find true love, and we relentlessly focus on that one objective, while avoiding our surroundings, we will gradually loose sight and will need to refocus our efforts. Don't focus all your attention on finding your significant other, rather work on being the best you, you can be;  every moment, every day. Remember, your one thought away from contentment. Grumbling is actually more toxic and contagious than any other action we can do. Instead, be content, in the moment, and thankful for where you are, and what you have - not what you don't. So stop, get your bearings, take a deep breath and refocus your goals.

  4. Simply the Best - If you're single and reading this, let's face one fact, you just have you. Work on making an impact, and other's will take notice of your efforts. True love isn't found in an online dating app, it's discovered when volunteering for the local charity organization helping others. When you're truly happy and content with your life and where you are, it's typically in those moments others take notice and are attracted to your self esteem and independence. I've never met a single human being who strays from a confident person, have you? Sure some days are better than others, I understand that sincerely, but approach each day as a new opportunity, rather than a burden.

  5. Honesty is the Best Policy - When I first found my true love, and later married her the following year, I reflected on the fact that I was open and honest with my partner. I told her my diagnosis' and some of the challenges I face daily. A true partner will not flee, rather gravitate towards honesty and humility. I prayed over ten years for a perfect companion to come my way, but I first had to work on me, and get over the "implanted thought" of being a sick person with complications. It's not complicated, it's life.