Sharon's Hope for Healing

My name is Sharon Rivera. I am a wife and a mother of two. I was having  symptoms with severe autonomic dysfunction since 2018 but only recently was diagnosed with Postural Orthostatic Tachycardiac Syndrome (POTS). A condition that is caused by autonomic nervous dysfunction, which is aggravated by being in an upright position. The autonomic nervous system is involved in the control of heart, blood pressure, temperature regulation, digestion and other vital functions. Even in seated position my heart beats very fast and I feel like passing out because my blood circulation is not adequate enough to reach to my brain thus I experience a lot of symptoms including severe lightheadedness and dizziness. I have been working with several doctors here in Hawaii to help treat my symptoms. Over the past few months I have gotten progressively worse. I am mostly bedridden and I am too sick to care for myself and for my family. I suspect that I have an instability in my cervical spine due constant neck and head pain. My head feels too heavy for my neck to support it, a lot of head pressure, stroke like symptoms, numb extremities, and GI issues that prevent me from eating well and make me feel nauseous most of the time. I am always tired, even the lightest chores I am trying to do puts me into flare.

I have been seeking support from family and groups online and I have learned that there are associated and/or other comorbidities along with my autonomic dysfunction. Also connective tissue disorder such as Ehlers Danlos Syndrome (EDS) plays a big role in developing a cervical issues where my doctor suspect that I also have this because I am hyper mobile. Cervical instability that include the tissues and ligaments in the neck could possibly collapse and become unstable which may lead to brain compression and this would create a lot of life threatening symptoms like paralysis, stroke or sudden death. These are all often times missed by medical health system in Hawaii, since we are limited access to the right equipment to be diagnosed. I am doing everything that I can to feel better however, I believe I am unable to get better if I can not get the right diagnosis and further treatment, including possible surgery.

As we are trying to manage my autonomic problems, I have asked my doctors to pursue for an upright MRI here to scan my brain and spine to give us the exact details and to determine the cause  that is causing my very debilitating condition but unfortunately these test are not available to me here in Hawaii. I need to go to the mainland for more test but it is impossible for us as my family and I could not be able to afford the cost that is needed.

Once I am able to get the right test and am diagnosed with Cervical instability, treatment would included me having surgery. I've done research and also found that their are a limited amount of neurosurgeon that is able to do the surgery.  I've been told by individuals online that the only way to treat someone with Cervical instability is surgery.

Asking for support is never easy, especially these times of crisis but I am here humbly pleading to request for help and support and my last ditch to achieve success in a situation that appears to be hopeless. This isn’t the path that i would have picked for me, for my children and especially for my poor husband for the years we've been together. I know there is hope always there is HOPE. There is always rays of light at the end of the tunnel and we are patiently walking by until we reach the very end to see the real light..So please help me/us to raise money and to fly to the mainland to get my right diagnosis for me to get the proper treatment as I am very longing to get better and to be the best I can be for my family.