My Story: Keep Your Faith and Forgive Your Body for its Failings

My Story: Keep Your Faith and Forgive Your Body for its Failings

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 editor@nationalpainreport.com

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.

Subscribe to our blog via email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Authored by: Liza Zoellick

  Subscribe  
newest oldest
Notify of
Robert

Hello Liza,
I have, have had AVN and four hip replacements / revisions and may require a fifth as the left still come out of place. My pain has never gone away some days it still feels like one or the other or both still have bone dying. Strange as the hips have been replaced but none the less they feel like the hip(s) are still there and still suffering with AVN. Some times without medicine I’m back on the walker or can’t move or even sleep. The pain can be excruciatingly dull in one or both or very sharp and right down the femur to the knee. It will present as just a burn on the sides on a good day, or in combination. Apparently AVN has some issues not known to a standard hip problem, as in a worn out joint. I have been told it may not ever completely go away.

Thank you all for the wonderful comments and sharing your stories. It helps so much to hear you and know that you relate and understand.

Maureen

DC, you ought to go to a Rheumatologist for your Fibro diagnosis. Try to research and find one that may specialize in FM though. Been there, done that myself.
If that diagnosis does not fit the bill then consider whether or not your have developed RSD/CRPS. GOOGLE that also for the symptoms.
Best of all and hang in there! Maureen

Jim in Pa

DC- Sorry for your pain. I have very similar pain to you. I have cervical and spinal stenosis. Sounds to me like you are getting pretty good care. You have a pain doctor who gives you opioids and sounds like he is trying to help you. You say that you have pain in your shoulders and arms. I have cervical stenosis which causes radiation pain down my left arm all of the way to my hand. Try to verbalize to your DR. what hurts and that your medicine is not helping. Unfortunately, because of the new war on opioids, Doctors are cutting back on the doses of meds.

DC

Hello, Thank you for sharing. My chronic pain journey has been about a year and a half. It started after I was rear ended in a car accident. Not a lot of damage happened to my car so some people think it’s unusual that I’m having a lot of pain. I’ve just finished a year of physical therapy for my neck first then my lower back. My shoulder hurts a lot now as well.
Sometimes I hurt all over. I would be nauseous and not able to eat most days if I didn’t have pain medication and Cymbalta. I started on Cymbalta because I was frustrated to the point of depression. That has helped with one spot where I have pain. When I was in physical therapy, the physical therapist threw around fibromyalgia but I have no formal diagnosis. I have a pain management doctor who is a spine specialist. Again, I have no formal diagnosis but I feel that I fit the fibromyalgia symptoms list. I don’t know which type of doctor to go to next to help me get diagnosed. Can somebody suggest which type of doctor to go to? This pain management doctor wants to do an epidural but the pain is not only in my neck, shoulder and arm. I’ve had a different shot for my SI joint but that didn’t help. I’m also pretty sure I have sacroilliac joint dysfunction also. Last night I hurt everywhere but especially my neck, shoulder and arms. I literally did hurt everywhere and my hands and arms were numb and my wrists were “swollen” when I woke up yesterday. Today I hurt everywhere, same thing in my wrists but my face was also swollen. Last night when I was in so much pain all I could do is cry, it hurt so bad. I wear a 15mcg Butrans pain patch and I use opioids but they barely touched my pain last night. Anyway, if you all could please guide me as to what kind of doctor to go to and when to know I should go to another one. And how do I choose the next doctor? Thank you!

Ibin

I don.t blame my body for the constant generated pain. I blame no “one” person. I am a blue collar worker that has physically worked for 42 years, At 59 years old, told that I could no longer receive beneficial, documented effective for pain, opioid medication at the previous dosage that has not been increased for 7 years. Yeah, there are days that even the prior to the “guideline” dosage does not ease the pain to a tolerable level but, one carries own. The reduction of medication, unilaterally harming patients, physiologically, emotionally, socially, monetarily, and spiritually is who should be shouldering…..the blame. The “inconsistencies” and “gaps” of adequate pain relief as per the CDC mis-guided-line: is causing an epidemic for patients that suffer with pain, 24 hours…..per day. I have set blame aside and am looking into the immediate future, which does not look “good”.
Nevertheless, life goes on, pain will still exist, medication situations will always be there..Radical “remedies” for the patient with pain has been affected negatively in an attempt to slow mortality from drug overdose. Dubbed the “opiod crisis” in America, is actually a drug overdose situation. The blame seems to be placed on the patient with incurable, continuous pain that is prescribed opioid medication. We have one body, one spirit, and one life. Life with continuous, incurable pain to a level of intolerance, even to the strong willed has been attacked. DOT. GOV has enforced a “policy”, a reference to prescribing that is doing more harm……than good.

RB

I wish that I was in a position financially to be able to see multiple providers, but it’s not possible. I can barely afford to see my PCP as we have a $4000 annual deductible. Fortunately, we do have prescription coverage, but my pain medication now costs me $110/month with a Goodrx coupon. If I used our prescription card, I would have to pay $170/month. My new PCP refused to prescribe three Norco 10/325’s that I had been stable on for six years and changed me to morphine sulfate 20 twice a day, which only are effective about 6 or 7 hours. Thinking back, not one of the past three PCP’s, including my new one (we’ve moved 3 times in 4 years!) have actually touched me to see where my pain is located. Not one! They’ve just taken my word for my pain – along with my MRI reports. I suppose that’s enough. I’ve rambled on long enough. Best wishes, everybody.

Danny Elliott

Lisa Zoellick, thank you for sharing your story with us. I must admit that you are so far advanced in your self-evaluation in the 3+ years of your suffering than I was at the same time period! One significant difference in you and me is that I didn’t have the Internet as a tool for research when my electrical accident occurred in 1991. After a few days spent in an ICU room and several more in a regular hospital room, I thought I had dodged a bullet by having my heart function return to normal and simply had to be patient in allowing the resulting muscular damage to heal. After that, I thought I was headed back to work and the life I was building. I had no clue how wrong I was. Long story short, I developed massive, incapacitating pain in my head within 2 weeks of being released from the hospital. I suffered several seizures w/in the next 3 months, all while this head pain was increasing in intensity and frequency. I was lost, especially due to the fact that serious research into electrical injury had only recently begun in earnest and it was nearly impossible to discover it. My big break came in a form that someone your age will barely be able to comprehend: Living in a relatively small city and having a large circle of family friends, someone noticed a small news blurb in the local newspaper concerning a research study that had begun at the University of Chicago less than a year prior. Seeing that I was 29-years old & single at the time (and fortunate that I had parents who could financially afford to assist me when insurance wouldn’t cover certain costs), we began to make phone calls, eventually connecting with & being accepted into the Electrical Trauma & Research Program at the U. of Chicago. Even with that fortunate turn of events, the research was in the early stages and all they could tell me was that my “symptoms” were quite common among others in the study. I was praying for a cure, but it was just as well that was all I learned because I then accepted that this was my current future “life”, unless some tremendous breakthrough occurred. It allowed me to accept that I had a different future than what I’d planned, even though through the many years that have followed, such “acceptance” has been very difficult. Which leads to my final point: I feel confident in saying that you are probably in for a rollercoaster ride of acceptance and frustration, successfully dealing with your new “life” and hating it. As for me, my spiritual faith has helped a lot, but even it fails me, quite often. By continuing to do the best you can, each and every day, you will be as successful as humanly possible in living your “life”, such as it is now. Also there will come a day when you will find an opportunity to… Read more »

Cherylm

I can’t think of one positive thing to say about what having chronic pain has given me. I wish I could be like you and others who find some meaning in this he**.

Definitely though trust your instinct. You know your body, not someone who haas examined you for 10 minutes. After a surgery I ended up with a painful protrusion in my pelvis area. One surgeon said it was because I was too skinny. Another said I had CRPS and needed a spinal cord stimulator. (Guess he needed a new car). Luckily I have some medical experience and new this was total BS. Finally hooked up with an anthesiologist who helped with injections for ACNES. It’s not the best solution but better than an expensive stimulator that could have caused more symptoms.

Janice

Lisa, Your post were very insightful and we share many of the same conditions. Like me, you have several disorders that are in the auto immune category. Have any of your doctors indicated that you might have multiple auto immune spectrum disorder?

Roslyn Bourgeois

Thank you Liza. We need all the support we can get. It is affirming to hear others say things you believe but may have never stated. I appreciate your voice.

Jim Moulton

Hi Lisa,
I can relate to a lot of what you are writing about. I have a lot of painful issues, like cervical stenosis, which at first was diagnosed as carpal tunnel syndrome , they did the surgery and it made my hand pain worse. I went another doctor who recommended I get a real full exam by a hand institute. My hand pain was caused by nerves that were pinched from a bad neck, not carpal tunnel. Since then, it has been one thing after another. I finally went on disability. I didn’t have any trouble with that, I went to the local office, a lady filled out an application. I had to see a couple of their doctors and I got it in about 6 months. Forgiving m body is something I never considered. Jesus forgave my wicked sins, very similar concept. Thanks.

Maureen

Liza, First off…I have to say you look like an adorable teen and not 42! in your picture. And secondly, I am sorry that you suffer so much.
I Thank you for such an inspiring story, full of hope and encouragement to accept and forgive ourselves. I too tell people that you MUST be a strong and knowledgeable self advocate. About 2 yrs ago I shifted gears from finding my cure to gaining self acceptance of my chronic illnesses and really got into researching my conditions then. I have learned since that I truly do know more than my doctors.
The problem is finding a doctor who is self confident enough to want to work with me as a team player on the future of care. It’s near impossible to find!
I wish you the best of all with getting your disability settled. Keep strong! Maureen

D. I. S. May

How sad to direct anger at the body suffering medical illness or injury and resulting pain. All emotions are data delivery systems and anger delivers information regarding a threat to the individual welfare of the person experiencing anger. Threats from within the person are brought to our attention with anxiety. Both emotions are accompanied with energy for solving the problem (fight or flight). Feelings are healthy, life saving methods of getting needed information onto the conscious platform. How we manage this emotion is where people get into trouble. The first task, in the presence of emotion, is to ascertain the person or people and the current circumstances the emotion references. I recommend simply sitting with the emotion and allowing all thoughts to come to mind while suspending belief. After the novel thoughts are finished occurring to a person, then a sort function is applied. It is then that each thought is examined and a decision made as to what belief to invest in the thought. My personal experience is that feelings of loss of control equal trauma. Feeling loss of control is intolerable, so ‘going to guilt’ is a natural tendency; better to be ‘at fault’ than feel out of control. I did this when a pet developed an ataxic gate. The thought that arose was ‘failure of care’; in other words, if I’d cared adequately for my per it would not suffer this plight. I knew at the time it was ridiculous; i.e., I decided not to invest that thought with beleif other than as noted, I was experiencing loss of control. What I did was take my pet to a specialist. I learned the pet was, as a member of a particular breed susceptible to spinal problems of the sort mine had. Fortunately, it was treatable with a medication easily administered orally and the problem resolved. Now I am filled with spinal problems that are due among other things to inflammatory sequellae of complex trauma. Anger I experience in relation to the pain and moderate disability I direct at the authorities responsible for my care as a child for ttheir collective failure to tend to my needs as a child resulting in the chronic fear and neglect I experienced growing up. Now I experience more pain and anger which I direct at authorities whose agenda does not include my welfare. More of the same. Authority and competence are far from co-occurring. Indeed, people with authority are often tepted to take money and favor in exchange for using their authority in ways that harm the people for whom they bear responsibility. Increased temptation. People with pain, chronic pain, are such easy prey. Those folks who do not entertain guilt, hold themselves as higher, mightier, because they have more money for example, are delighted to move towards blame. Moreover, they are not picky about who they take their anger out upon. Easy prey? Excellent! These people who are vulnerable and stigmatized make it easy for people who are lazy. Predators… Read more »