Rae Lewis-Thornton: “Each Day Renders A Right Now”
Well, here I go again!! I started IV medication last Tuesday and this week makes round two. I know for sure that I least have one more round. What a way to spend Thanksgiving week! Things had been going great until now. Other than recovering from the liposuction, I really can’t complain. BTW, the heeling from the liposuction is going well to! The swelling is going down daily. The doctor said it will take about 3-4 months to fully recover. I have more to say about this another blog coming soon.
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It’s seems that this life style change I have under gone with my diet and exercise is rendering some great results. My Irritable Bowl Syndrome (IBS) was under control and I was feeling better overall. I wasn’t blogging much, not sure why because I have lots to say, but I was pressing my way in other ways.
Then BAM, here I go again. So my life is turned upside down again. I’m sick as shit from the side-effects of the IV medication. Nausea and fatigue is the order of the day. Yesterday, I was so sick the smell of food made me sicker. I’m to weak to work-out and cook and juicing went to hell in a hand basket. So this week I realized that my IBS is flaring up yet again. Yep, I’m constipated yet again. So for sure I know now that juicing and working out was actually the thing to get my bowels moving and was the thing that was making me feel better overall.
It’s seems that this herpes continues to be the thorn in my flesh. It’s been almost four months since my last round of IV medication and I was hopeful that it would be much longer before I had to travel this round again. You can search my blog for herpes to get more back ground.
But basically I have drug resistant herpes. A very aggressive genial herpes that has been complicated by my impaired immune system. Herpes also attacks my nervous system causing nerve pain in my back and feet mostly. For the last 7 years, the only thing that will treat this form of herpes is two very aggressive anti-viral medications taken intravenously, cidofovir and foscarnet. I’m on cidofovir now. It’s a once a week, all day infusion at the chemo infusion clinic and it wipes me out.
Yesterday I was so sick that I didn’t want to do anything but be. It seems that this round is taking a toll on me. Typically, I’m able to bounce back and get back to some of my normal routine about 3 days after the infusion. Which is great, because I’m able to be human again before I have to go back for the next round.
But this time I’m just not bouncing back and that has left me with a funky attitude. I hate having a funky attitude, but being all chipper is hard when you feel like crap. I don’t know how those, happy go-lucky, praise the lord people do it. You know what I’m talking about. You ask, “How ya doing?” and they say, “blessed and highly favored!!!” in that cheerleader beat and the world is falling down around them. Me on the other hand, I be like, “How the fuck you think I’m doing,?” *hangs head*
I just don’t have it in me to fake it, until I make it. There’s something about faking it, that adds an extra burden. Not only do you have to figure out how to keep your head above water, but then you gotta find extra energy, keeping that cheerleader beat. It’s easier for me to just sit still, accept that my capacity is limited and take the time to get better. In the end, I can give an honest answer about how I feel. And y’all know that honesty is my only policy!!
I’ve done real well in seeking out alternative methods to be as healthy as I possibly can both physically and emtionally, and for sure I’m still searching. I’m thinking about adding medication to my routine and that my help me get through those dark moments a tad better. For now, I just listen to a little gospel music and cuddle with my baby girl, Sophie.
Living with HIV/AIDS and all the complications that come with it, could be a full time job. It certainly is a life style of its own. But even so, each new day renders a right now. So instead of faking it, I’m embracing the right now and seeking avenues to make the right now better. There is healing in the honesty of your right now. There’s an African Proveb that I love and take that with me in all things, in all areas of my life, “He who conceals his disease cannot expect to be cured.” Embrace your right now in truth.
My Story: “My Dad Died From AIDS…& I’m HIV Positive”
Internationally known, award-winning photographer Duane Cramer has become an advocate for HIV awareness for over two decades after finding out that his best friend died of the disease. His best friend being his father.
Duane’s dad died of AIDS 29 years ago. Because HIV/AIDS had such a huge stigma back then, the family initially told everyone that his father died of cancer.
“He had been sick on and off for quite some time; the doctors really didn’t know what was going on,” Cramer recalled. “In the ‘80s, when my father died, there were no medications…there was a lot of shame and guilt around HIV/AIDS. We were really fearful of the stigma…we actually told people that he had died of cancer.”
Duane then started volunteering for various HIV-educational programs. But he felt like something was missing from the conversation, and that the HIV/AIDS story from a black perspective needed to be told.
After 10 years of volunteering, Duane contracted HIV himself from a relationship. Both his and his father’s diagnoses fueled his passion to educate the community even more.
“At first it was only a white gay man’s disease, and those blacks with HIV were left out in the dust.”
Duane currently encourages people living with HIV to help develop a treatment plan for each other, using his photography and creativity to bring much needed attention to the disease. He has been involved in various campaigns and HIV-education initiatives designed to get people talking about and tested for HIV. Duane captures social images, and shares those images to incite conversation and tell stories. Which is appropriate, since Duane sees himself as a professional storyteller.
Duane is currently working with Merck on Project I Design, a educational campaign that helps people living with HIV to work with doctors on their own terms. As a part of the campaign, Duane shares his personal experience to show the importance of a healthy dialogue with doctors and patients.
“If there’s one thing I want our black community to know is I want people to really be authentic, especially with their doctors. So many times–for whatever reason–we don’t tell our doctors the whole story, which delays accurate diagnosis and treatment. Be real, so you can be healthier. No matter what happens, keep a positive attitude. It’s a value that my family instilled in me and it’s kept me going all these years.”
For more information on Duane and Project I Design, click here.