My Story: Barbara Jennings

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What were the steps leading up to your diagnosis?

In 2009, I lost my mother who was my best friend. Just four months later, our home flooded, destroying everything we had. After the flood, I contracted strep throat and a severe ear infection that led to severe vertigo. From there, everything just took a spiral downhill. I began having migraines almost every day, constant dizziness, heart palpitations, pain in various parts of my body, and extreme tiredness. This progressed for two years before I finally received the fibromyalgia diagnosis.

What lifestyle changes have you needed to make?

Before this, I was the person that everyone would call when they needed something. I was independent, strong, and as healthy as an ox. I am in my senior year of college for my bachelor’s degree in Psychology. Since getting sick, I have had to cut down on my courses; I have to cancel plans with my family a lot; and I have had to change my diet as well as almost every other aspect of my life. When you deal with chronic pain every day of your life, it would be easier to ask what you haven’t had to change. Nothing in my life is the same as it was before this horrible monster robbed me of my normalcy. I lost the life that I once had and the sad thing is that I will never get it back.

Who has been there for you? How?

My husband has been my greatest support through this. He is there to massage my back when I am hurting, tells me I am beautiful when I am feeling ugly, and helps me complete the chores that I can no longer do. We have two children that suffer from a very rare genetic disease and they have a lot of medical issues. Had it not been for my husband, I can honestly say that I do not know how I would have taken care of them through this.

What accomplishment are you proud of?

I am proud that I graduated with my associate’s degree in Psychology and now have almost finished my bachelor’s degree.

I lost the life that I once had and the sad thing is that I will never get it back.

We warriors must stand and allow them to hear our voices.

We warriors must stand and allow them to hear our voices.

What's your advice to someone else living with Fibromyalgia?

Do not ever give up! Even when the pain is at its worst and you are so tired that you cannot get out of bed, never ever give up. There is a brighter day. There are days that are horrible but then there are days when you can almost pretend that life is normal again. Learn all that you can about this disease and use your voice to raise awareness. There are many out there who believe that this is in our heads and that it is not a real illness. We warriors must stand and allow them to hear our voices. We must show them that it is real and we hurt.

I am an advocate now. I advocate for rare diseases and fibromyalgia.

Is there anything else we should know?

I am the mother of two precious children that have a rare disease. They are the only known cases in the entire world. Their disease and fibromyalgia has led me to my purpose in life. I am an advocate now. I advocate for rare diseases and fibromyalgia.

About Barbara Jennings

My Story: Barbara Jennings
I am 44 years old. I just completed my BS in Psychology. I am a mother to 2 special needs children who suffer from duplication of chromosome 14q32.33. They are the only known case in the entire world. I am an advocate for rare diseases. I love researching geneology and someday my goal is to establish a non-profit organization for rare diseases. I also hope to travel and spread awareness for fibromyalgia and rare diseases.

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