Want to help me with my health journey?

Hey everyone, for those who don’t know me I’m Billie!

Ever since I was born I’ve always had medical issues. My legs were the first issue. My mom could never figure out why I was always crying as a baby. Then when it came time to crawl, I refused and scooted around on my butt. Growing up my mom always took me to the doctors for my legs and they would always brush it off as growing pains. As I got older and stopped growing it was then brushed off as patellofemoral pain syndrome.

Throughout the years I’ve gone through some major medical issues that have landed me in and out of the hospital and doctors with no real answer. Between asthma attacks and fainting and severe pain flares.

A few years ago I became really ill and I was vomiting multiple times a day. The symptoms just kept coming. They’ve taken my gallbladder out, treated me for severe infections. All while dealing with chronic pain at the same time.

After working with a physical therapist, he pointed out I was hypermobile. I started looking more into it and then after tons of research, I came across some posts of Ehlers Danlos Syndromes.

After working with my new doctor, I was able to be diagnosed with hypermobile Elhers Danlos syndrome without the genetic testing. My doctor has been an amazing support and has sent out so many referrals to get me help.

After speaking with an Occupational therapist, he suggested I take the test. He highly suggested I take this test for my own personal helper. He believes I may have another type of Ehlers Danlos syndrome, but advises against having a gene test ran on me and put in my medical chart as it can ruin my chances of getting life insurance in the future.

I already have the hypermobile in my chart so that gives doctors the warning, but I’ll still be able to get life insurance in the future.

My primary also believes I have some sort of autoimmune disease, but we can’t seem to pinpoint it. I honestly just want answers and I feel like this would be the key into helping me pinpoint my health issues.

I am finding it harder to get around these days as I’m slowly losing the ability to stand and walk without my heart racing or my legs and back being on fire and trembling. The nerve pain is traveling and I’m just so fatigued all the time. I want to get answers so I can find a better treatment. I want to take my life back!