My Story: Living With Pain That Never Ends...Never
Hello to you...My name is Deanna, and I never imagined I would be here — writing this, asking for help to survive. I left the corporate world. paid my way through night school and eventually earned my Master’s in English Literature in 2006, and I had dreams of teaching, writing, and building a meaningful life. But that same year, my health collapsed. I was diagnosed with fibromyalgia, a neurological and autoimmune-related disease that causes unrelenting pain. It’s been downhill ever since.
I'm only 53 and I'm laden with the number of health problems ten people have. A few year's ago I left the States to move to Vancouver in Canada to be near my family because I have been dealing with multiple health issues for many years. I love spending time with my Dad, watching football games and having Sunday dinner every week with him. I love to write and teach - I have a master's in English lit and was a professor for many years. Those were some of the best times of my life. However, Fibromyalgia has taken away those great times and I am stuck.
Over the years, my body has been through surgery after surgery and blow after blow: my gallbladder removed in 2000, my appendix in 2007, my back “going out” in 2005, open-heart surgery to replace my mitral valve (At the age of 41!!) in 2018, a diagnosis of chronic daily migraines in 2018 as well, multiple hospital stays, and most recently — a fractured vertebra after a series of terrible falls. Doctors don’t know why I fall, but severe muscle wasting and peripheral neuropathy in my left leg mean I sometimes drag my foot just enough to lose balance. I’ve hit my head, my ribs, my knees, my spine. The latest fall nearly took away my ability to walk at all. I live with severe GERD (acid reflux) that has destroyed most of my back teeth and a couple of my front teeth. I think I will have dentures in the next few years.
I wake up every day to a body that feels like it’s been beaten, muscles torn off the bone. I often describe it as the worst hangover of your life multiplied by ten, mixed with the worst flu you’ve ever had multiplied by ten, and then fused together into something that never stops. It isn’t just debilitating — it’s disintegrating.
For two weeks recently, I was hospitalized. While there, something extraordinary happened. A kind nurse named Julia advocated for me to try a treatment I didn’t even know was possible: a 24-hour ketamine infusion. For the first time in years, I experienced a miracle — my pain was gone. I was able to call my dad and say words I never thought I’d speak again: “Dad, I’m not in pain.” That one day of relief reminded me what life could be like. Sadly, the infusion wore off, and the pain returned with a vengeance. But I hold onto that day as proof that relief is possible, even if the system makes it almost impossible to access. But it is possible to break this vicious cycle of pain if I have with more frequent infusions.
I am not without support. My dad, at 83 years old, has stood by me through every hospital stay, every surgery, every day of this fight. He should be enjoying his own later years, but instead, he is my caregiver, my anchor, and my lifeline. His apartment is now being sold and the place he has called home will be lost. He recently lost his car of 20 years in an accident — a heartbreak on top of everything else. He has given all he can, and more than he should have to. I wish I could take care of him, but I am so weak I can’t even care for myself. Now he is overwhelmed with costs and tasks an 83 year old should never have to worry about. And I feel like so much of his stress is all because of me. He loves me so much and does everything he can to help his one and only child.
The truth is, I am isolated. Friends fade away. Family doesn’t step up. We are each other's only family. My condition is invisible, and so people assume I’m fine because I look fine in photos. But an invisible illness is a prison. It leaves me begging for the most basic dignity — the ability to afford food, my medical supplements, to get treatment, to keep a roof over my head, and to have some hope of a life beyond endless pain.
If you know me, then you know I have always loved to laugh and smile, to be silly and make people laugh, to learn and share, and take care of others. Now it is a fight just to try and smile at all. I miss the old me. I miss sharing the "old me" with my friends. If you saw me now, you wouldn't recognize me.
I am asking for your help — not for extras, not for luxuries — but for survival. Every donation, no matter the size, makes a difference. Even $25 — the cost of a coffee and a scone at Starbucks — helps keep me afloat. I am so grateful to anyone who reads this, who shares it, who believes me, and who helps me carry this weight.
Please, if you can, help me find a way forward. My body and spirit are so tired. I need a break.
Anything is appreciated; there is no gift too small. If you would like to break up your donations into smaller monthly contributions, please visit my Patreon site ...for the daily price of a cup of coffee you can change a life. As I look towards the possibilities of the future, I humbly ask for your support to truly live once more
With gratitude,
Deanna
Organizer
