By Liza Zoellick.
A 43-year old chronic pain warrior from Houston has decided to share her pain. She believes the answer is not one thing…but a combination that she has “prescribed” for herself and for others. The National Pain Report is asking chronic pain warriors/patients/sufferers to share their story and how they deal with pain. Send your story to firstname.lastname@example.org
My illness began 3yrs ago, innocuously enough in the form of hip pain. My previous history included avascular necrosis which prompted the necessity for total left hip replacement, and so when the pain began I had worried it was the AVN. Instead, it ended up being this long battle with determining the cause of the pain, and ultimately resulted in not just one diagnoses but three. The first is sacroiliac joint dysfunction, more commonly known as SIJD; the second is fibromyalgia as the pain evolved from localized pain to widespread pain and the third, which i believe was already present and simply overlooked for an easy diagnosis of fibromyalgia, is rheumatoid arthritis. It took several doctors, including two pain management and two rheumatologists to be able to diagnose me correctly. I also struggle with chronic migraine and IBS-d (a symptom that seems to tag team with fibromyalgia).
Chronic illness has had a very powerful effect on my life in its entirety. I can no longer work and I am in the process of fighting for disability. The system is difficult.
For one to navigate and often a convoluted one that also necessitates the need for legal counsel to maneuver and understand it. I feel like chronic illness has taken away not only my ability to do some basic things in my life but with it, my self-worth and self-esteem. There is a stigma, especially for someone my age (43), who is not working. You are seen as lazy, sometimes even as though you are trying to manipulate the system because you don’t want to work. It’s very hard living with this feeling of not doing your part. But chronic illness has also impacted me in positive ways. I have started a blog called lovekarmafood.com that talks openly and honestly about chronic illness/fibromyalgia/R.A. and I try to give people hope, and information and I want them to know they are not alone. Chronic illness alienates you from the rest of the able world.
I am dealing with my illness through a combination of medications and yoga and diet. I am also dealing with it creatively, by writing and engaging in chronic illness social media. I do take opioids, but my rheumatologist is also treating me with biologics and my hope is to eventually be off opioids and be able to live in moderately less pain.
If you are going to take one thing from my story is to be an advocate for yourself. Had I stopped at one doctor and just went along with what he said I would be in much worse of shape than I am now. And by advocating for yourself I do not mean simply going to different doctors and waiting to hear what you want, but reading about your diagnoses, investigating the symptoms and different treatments and learning to ask questions. We have this pre-conceived idea that Doctors are the epitome of knowledge, but the hard truth is, that many don’t know chronic illness very well and do not know how to treat it. It’s up to you as a patient to research for yourself as much as you can and bring it to the doctor so that both of you can determine the best course of treatment. The other thing I would say is not to lose hope and forgive your body for its failings. Some things are out of our control and chronic illness is not something anyone asks for. Forgive your body and do not blame yourself. Once you do that I think you can accept and move on.