You might be wondering what is the Visibly You Project and how did it arise?! Being a boudoir photographer I have photographed hundreds of women and many have shared a little glimpse of their personal journeys with me. I came to realized that there were so many issues both physically and mentally affecting how women see themselves. While most of us are finding a way to feel comfortable in our own skin there are other women fighting silent battles that even their friends and family aren’t fully aware of. I was shocked when women began to tell me their health issues, most of which I had never heard of and that’s when I decided I wanted to learn more about the battles that women are facing and help these babes educate others as well!
EACH one of these ladies has a unique story of pain or disorders that will be brought to light. This is a continuous project focuses on different areas of health or stigmas. For the first #VisiblyYouProject I selected women from my private boudoir group that had invisible pain or disorders. Without further a due I’d like to start introducing these beautiful women!
She is sharing her personal journey with the Alpha 1 Disease.
Why did you want to join this Project?
“I wanted to join the Visibly You Project, to allow myself to be an open book about my disease, and let others, know that, although many times, I may not feel well, and I may want to just stay in bed because I have no energy, that I still get up, and fight through the pain and uncomfortableness of not always feeling 100%, but do it anyway because, I will not allow this disease to take over my life, I own it, it does not own me!”
When and how did you discover your disorder?
“In October 2017, I was constantly going back and forth to my primary doctor for being sick, bronchitis, pneumonia, sinus infections, amongst other symptoms. My doctor was putting me on antibiotics, steroids, and I was buying a ton of cold medicines. I was trying natural remedies to try and kick these "cold" symptoms. So after about, four months of back and forth to my doctor, she ended up sending me for a COPD breathing test. I went of course, and as I was doing the breathing test, there was another test ( Alpha 1 Deficiency Disease) that was there, that the specialist explained to me, and me being me, I said, "what the heck! why not, let's just rule this out." So I took the test, a very simple finger prick test, takes about 1 minute. So the specialist, explained to me, that it takes roughly about three weeks to get the results back and as she is explaining this to me, she is telling me that Alpha 1 is a rare disease, and not "well known". She also explained to me that there are different levels of the disease. So I went about my business and continued my life. Around three weeks later, I get a call from my doctor's office and was asked to come in, some thinking about the COPD test, that I may have COPD because I smoked heavily. So my doctor and I sit down, she proceeds to tell me, that yes, in fact, I do have COPD, and I also have the Alpha 1 Disease, and I am in stage three of it. I am an SZ, my doctor told me, and it is the moderate to severe stages. It is a genetic disease and was passed down to me from my parents, more specifically my mother, who passed away in 2014 from COPD, and emphysema. She never smoked a day in her life.
I see a specialist that knows all about the Alpha 1 Disease. He has explained to me that there is a commitment that I must uphold on my part, to stay healthy and live a long happy life. I receive weekly blood infusions, which I will need to do for the rest of my life. I have a nurse that comes to my home weekly and administers the infusions through IV. My body does not produce the proteins that go into my bloodstream to protect my lungs to keep me from getting colds, bronchitis, and all of the others sicknesses. Alpha 1 affects my liver and my lungs so I quit smoking and I am committed to staying healthy and being there for my children and my fiance.
My feeling on this entire life-altering thing is that God only gives us what we can handle, so he thinks very highly of me, knowing that I can conquer anything and I can be a spokeswoman for this unknown disease, who only 100,000 people in the United States are diagnosed with. I am here to spread the word and get the Alpha 1 Disease out there. This disease is genetic so your parents must have the gene for the disease.”
What would you say to someone else experiencing the same symptoms as you or any help insight that has worked well?
Please go see your primary doctor, explain to him/her how you have been feeling, and then research, research, research! Also, connect with people that are going through the same thing as you. Join a support group through the Alpha 1 Deficiency Disease website.
Are there any helpful resources that you personally have read or used?
“I talk to my "sponsor" Jason on a monthly basis, he has the Alpha 1 Deficiency Disease, but he has the most severe, ZZ level. He actually has to wear oxygen because it is that severe, he also gets he infusions as I do. My nurse Danyelle whom I love her to pieces, she does my infusions, and she is an expert on Alpha 1 and works strictly with Alpha 1 patients. I am blessed to have her in my life.”
Were you nervous about having a boudoir session with me and how did you feel during and after the experience?
I was not nervous, I just was not sure what to expect. The experience was beautiful, and I felt beautiful and empowered.