I am a 47 year old mother of 6. For 17 years I have been fighting chronic pain, disc herniations, fusions, fusion revisions. I have fought, and come back from every surgery, not only recovered, but overcome, gotten stronger. I have taken all the tools and used them to the best of my ability to maintain my physical health and avoid more problems. I have gotten myself from wheelchair status to spin bike queen.

It’s different this time, after years of constant, chronic, debilitating pain, and 7 spinal fusions and/or revisions, I have spent the last 7 years deteriorating, in and out of appointments with all types of specialists, the best of the best, only to tell me I’m perfectly fine even as my symptoms worsened. Now, the clicking in my joints is so loud and constant, that it can't be ignored, and I worry that irreparable damage is being caused. I am unable to stand solidly on my feet, I cannot sit for more than 10 minutes. I change positions constantly as I lay. I spend most of my time alone, trying to get my body in a place that allows me to breathe, think clearly, and participate in normal life. I am no longer able to.

It is going to require a specialized team to do thorough medical testing to help me find an answer and guidance. Though I don’t have an official diagnosis yet, HEDS is the expected result. It causes my joints, every single joint from head to toe, to slip in and out of the socket all day long. This creates hundreds of minor subluxations, and some full dislocations daily. My body does not rest, because the muscles are always trying to protect my nervous system. Muscle spasms are created, and pulling occurs on other joints, creating an endless cycle of pain. My body audibly snaps, clicks, and pops in and out of place all day long. There is no medication that helps, no furniture that exists that holds me comfortably, and no position I can get into to get relief.

I need to fund a trip to the Mayo Clinic in Florida. I need to be seen and cared for in their EDS clinic. I need access to doctors that can help me. I need answers and directions. I have no quality of life. I am my pain, I walk, I talk, I breathe, I exude pain. Existing is overwhelming. It has stolen the best of me from myself. Separate from my six kids deserving a functional mother, my husband deserving a wife who can be more than a patient, I deserve to live. I have been wasting away waiting for a doctor to finally hear me.

Two doctors in a row now acknowledged that I need something beyond that they are capable of. I was told a typical doctor or specialist won’t be able to help me. I need a full body team of experts in a very rare and specialized field. It knocked me off my feet to hear I can’t be helped, but it was as validating and honest as a doctor has been for a very long time. Simply being acknowledged as valid after years of dismissal and medical trauma is enough for now, but it also means I’m starting over. All the way over. I don’t want to waste any more life on this. I want to get where I need to be and I want to know what I can do.

I am overwhelmed and desperate for answers. I want to live, not just exist in pain. Any and all help is appreciated. This is my only option at this point. I am losing my mobility and my ability to walk. I am working hard to maintain what I have, but it is without guidance. Every day counts. I thank you for taking the time to read my story. I hope to get to a place that allows me to manage my illness and allows me to be an active participant in my life. I just want a chance. This will not be a wasted opportunity.