10/14/2019
Since it's Dyautonomia Awareness Month, I wanted to share my story from a year ago.
FELICIA’S STORY
I’ve always loved taking photos and had the privilege of learning under the late Elwin Stilwell of Victorian Rose while in college. I only used my photography knowledge as a hobby to take photos of my daughter and friends thru the years. When my granddaughter was born, I began picking up the camera even more and was soon asked by many to photograph their families as well. Special thanks to Bryan Drum for all his pointers during this time frame. This began taking up so much time that I realized i had to either tell people I couldn’t or turn it into a small business. This was a difficult decision for me because if I could do everyone’s photos at no charge I most definitely would. However, little did I know that the Lord was preparing me for some things that would soon enter my life that I never expected. I reached out to Jim Pruett of J Pruett Photography and a lifelong friend of my husbands. What a blessing he has been leading and guiding me in this new adventure. Of course, he will be the first to tell you that I do not consider myself a professional photographer. I still feel I have so much more to learn. Maybe one day I’ll get there but for now I still consider my photography a hobby. Of course, it's a hobby I take seriously and strive to make each individuals pictures unique.
Three years ago, I developed POTS (Postural Orthostatic Tachycardia Syndrome) which is a form of Dysautonomia, an autonomic nervous system disorder that very few doctors are familiar with and currently no cure. Most individuals with this chronic illness look completely heatlhy. I couldn’t get good deep breaths of air without lying down. I had lots of inflammation on my right side near my neck and collar bone, along with major shoulder pain. Eating a regular meal is extremely difficult because it drastically affects the breathing. Housework that took me a few hours to do now takes a few days. Yard work that I always enjoyed is now mostly done by my husband except if I have a really good day I do try to help out because I know he doesn’t like yard work but he is so wonderful about trimming the shrubbery and edging just to make me smile. All this began while my husband was working out of state and only home for less than 24 hours in a week. We decided it best to enroll with a doctor that would be available for me to reach out to 24/7. Dr Tom White and Hometown Direct Care have been amazing. Most doctors would have told me this was all in my head but Dr White listened and has spent numerous hours of research trying to help find answers. Most people go undiagnosed with this condition for at least 6 years. I had answers in less than 2. Although we don’t have any treatment options at the present time due to limited research we have found something that gives me some relief occasionally. This diagnosis came as quite a shock because I have always been healthy, have always eaten healthy and exercised regularly. Now I’m lucky to go for a brisk walk.
I admit I was angry and have asked God numerous times why after thinking we have answers only to be let down yet again. He always shows me someone in a situation much worse than mine. Most days i have learned to function thru the difficulties but some are just too much to bear, so I take a break by lying down. I feel like I miss out on so much with family especially with the youngest grandchild since I physically can’t hold him like with the others or I pay dearly over the next few days. It’s frustrating because no one seems to understand and the medical community has no answers. After 3 years, it makes you began to feel like people think it’s all in your head. lots of people try to tell you how to fix the situation. The friends & family that were so concerned during the first year, soon stop checking on you to see how your doing since things continue to stay the same with no true answers or results and you feel like they just aren’t interested in what the next step of treatment will be. Lots of people get depressed and just finally give in to the sedimentary lifestyle. I understand because I've wanted to numerous times, but that’s when God sends along that special friend that continually prays and cries with you thru the difficult days and always keeps you laughing to take your mind off the pain. It’s friends like that and the photography that keeps me sane.
Your support of my photography has also helped with the large medical expenses. I can’t thank each of you enough who have supported and continue to support me thru this photography journey. I also asked for your continued prayer that soon there will be answers that will help with being able to treat this condition and I ask that you pray that I can learn to deal with this and accept this with grace instead of anger and frustration. I do know that the Lord is right here with me, walking with me through this each step of the way. Jeremiah 29-11-13 says "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart."
By sharing my long story and striving to be honest in what I've dealt with, I hope that someone will find hope to keep going thru those difficult days of dealing with chronic illness and know that God has great things in store. (Photos by Tara Jones)
2018 Update: I am no longer taking the medication that gave me some relief, but a gluten free, sugar free diet has helped tremendously with some symptoms. I do try to stay busy to keep my mind off all this. I work full time & then do photography...and of course there has to be time for those precious grandchildren. I've been to quite a few more doctors & still more upcoming appointments. Seems that Dr. White & I are much more knowledgeable (after years of research) than most of these. That's the reason I chose to share a story each week in October...to make people aware. Thank you again to the family & friends who continue to help me through this...you all make this much more bearable!
2019 Update: Made a lifestyle change to grass fed meats, no wheat, soy, rice, beans, corn, dairy, sugar. Quite a big difference in the ability to function daily. Special thanks to the OptiYou Rx program and Billy Wease. I do still deal with many of these issues but after 4 years, it's still a struggle somedays. We are still researching and testing when we find a new lead.
