How A Car Crash Changed Her Life: Cathy’s Story
A Series of Interviews With Chronic Illness Patients, Uncensored and Raw Truths About Life With Chronic Illness.
If you have a chronic illness, you know that each story is unique, including yours. I’m always telling my clients ‘No one knows you better than YOU’. Of course, in this experience, there are some very difficult experiences shared by many of us: at some point a doctor has probably told you ‘It’s all in your head’, You’ve likely been dismissed, your symptoms minimized and may have been made to feel as if your body is lying to you. It’s important to hear from others who might be going through something similar, to see how we are all different and most of all – to know we’re not alone in this struggle looking for validation, treatment and support in getting our lives back.
Keep reading to learn how my first guest Cathy defied the odds to be with us today and how her spirituality, among other things, has helped keep her going…
Q: What brings you to the realm of chronic illness? How did it all start for you?
A: “I was diagnosed with IBS when I was in the 6th grade. I had bad headaches and problems with my jaw and my hearing starting that same year. I always was getting a sprained ankle, or twisted my knee or a backache. My family thought I was a hypochondriac. I tucked away being sick and tried to be normal. I learned to live with my little things, grew up was married and had two children.
It is funny, I was not going to start with my childhood aches and pains. Usually I start with the car crash we were in when I was in my mid-thirties. I realize that the early symptoms I was having were related to the genetic disorder I have, Ehlers-Danlos Syndrome, hypermobility type. Although I was not officially diagnosed with hEDS until I was in my 50’s, it is easy to see who in our family has EDS, we just did not understand how it affected us.
I was in a car crash with my 10 and 12-year-old daughters and my husband. I was in the passenger seat with my feet on the dashboard. The car only had lap belts, so when the car which was going over 100mph came around the corner and hit us head on it changed my life. The car that hit us had three teens in it, going on a beer run for a graduation party. Two of the three boys died. My husband and daughters sustained some injuries, I was very hurt. It took some time before they could get me out of the car. I had two out of body experiences that night. I have written about the spiritual parts of what happened in my blog if you want that part of the story.
My injuries included rupturing my intestines. Over the years I have had many abdominal surgeries, removing bits of intestine that became scarred over. My uterus and gallbladder were removed and finally when I was 60, I had a permanent ileostomy and a suprapubic catheter placed. In the crash I also had many orthopedic injuries. I fractured my jaw, some bones in my face, my right wrist and because my feet were up on the dash when we were hit, both feet were turned backwards, toes to heels. The left foot was torn through, leaving my foot dangling from muscle and skin on one side. I also had head injuries, a fracture in my neck and in my lumbar spine. I was fortunate to have survived, but the toll it took was huge. I had multiple surgeries on my feet and ankles, both knees were replaced and both shoulders were replaced too. Then I had my left shoulder was re-replaced. I stopped counting surgeries at 30.
I was diagnosed with Fibromyalgia, arthritis, and other chronic pain syndromes. My goal was to live to see my children grow. I have done better than that. My husband Chuck and I have 4 grandchildren and we have a very close family.
If all this was not enough, I started fainting about 10 years ago and after many doctors and a huge number of tests I was diagnosed with a type of Atypical Parkinson’s called Multiple Systems Atrophy. There is no cure or treatment for this disease, just treatment for the various symptoms that happen. I was undiagnosed with MSA and told it was some form of Atypical Parkinson’s, but the kind is unknown. Some of the symptoms I deal with are fainting, low blood pressure upon standing, confusion, choking, incontinence, headaches, depression, tremors and weakness. I am in an electric wheelchair most of the time and try to use a rollator (walker) while in the house. I have gone through periods where I had to have someone with me all the time. My sleep is disrupted with apnea (I wear a bi pap at night) and night terrors. I act out my dreams and have done some things that are funny and some that are really scary. I broke my side table thinking I was surfing, cut my hair with some small scissors, I have taken the wrong medications, talk and scream and was working hard to turn the lights, and woke to find I was using my grandsons’ nose for the switch.
Two years ago, my doctors stopped all my pain medication because of the “war on opioids”, not seeing the difference between addicts, who get high and chronic pain patients who take meds to function. I am in Palliative Care and the Doctor finally gave me a prescription for 30 hydrocodone for 30 days at a time. I am afraid to take them, scared that he might decide not to refill them. I also use THC and CBD for pain. “
Q: What’s the most challenging aspect of life with a chronic illness?
A: “Just trying to do things, to be involved, to not need so much help just to get around. It takes me 3 hours to shower. Everything takes much longer and I feel I do not participate in my life as well as I should. I sleep way too much, have to be transported in a special van. My weight has increased with my meds and lack of exercise which makes it harder for people to help stand. I am living in the present moment, but not in a good way. I lose words, names, events and then have panic attacks because I feel so out of control. “
Q: What has been something rewarding or positive that has come from your chronic illness experience?
A: “I have always been an artist, but took to drawing Mandalas are part of my meditation practice. I have spurts of artistic impression. draw, paint, design a clothing line and have had a series of art shows and sell much of my work. I get to spend time with my family. “
Q: What are some things you wish people understood better about your illness?
A: “I still have a lovely face and smile and I am a interesting person so even though I am in a wheelchair I get “the look” and sighs when I ask for help. I wish people did not feel that it is okay to ask me all kinds of personal questions. “What do you have?” “What medications are you on?” “Have you tried alternative treatments?” and the worst, “I know the person who ‘s cousin had something like yours and they tried XYZ and it cured them, and I am sure it would cure you.” And the other horror, “You know, if you just lost some weight and exercised more you would feel much better.
I try to be nice; I am a nice person. But deep inside I just want to hit them and yell “YOU HAVE NO IDEA WHAT I DEAL WITH! I AM A STRONG WOMAN DEALING THE BEST I CAN WITH NOT JUST ONE, BUT A BUTT LOAD OF DISEASES, SO FUCK OFF!” (sorry) “
Q: What are some of the best techniques or strategies you’ve used to manage symptoms?
A: “Meditation, drawing every day, hanging out with my grandchildren, taking drives looking at birds, the ocean or the mountains. Taking my medications, but always asking why I am on them to make sure I don’t take something I don’t need. I have a bed that goes up and down, it is hard to sleep in a flat position. My garden, my service dog and being current with the news and having great discussions with my son-in-law who has very different opinions and is very smart. “
Q: Have you ever seen a therapist to help with your illness experience? If so, how has therapy helped you?
A: “Absolutely. I see a Therapist once a month now. It was every week, but I am doing better now. I can call and see her if I need to, but about once a month is working for now. She helped me when I was diagnosed with MSA and given two- or three-years tops to live. Lots of grief around that. Then the anger around realizing I might not die after all and begin to start up my life again. She is always there when I need here. “
Q: What advice would you give someone who recognizes something might be wrong but still hasn’t received a diagnoses or has just received a new diagnosis of chronic illness?
A: “My spiritual life has helped significantly. I warn people to reexamine the spiritual community they are in. If in any way they believe that your illness is God’s will and you are being punished, or that some bad Karma has caused you to be sick, run away. Hang with only supportive people. Choose someone to really hear you and not give advice.
Focus only on what is actually happening, not what you have been told is going to happen. Symptoms only. Dr Bernie Segal who wrote the book, Love, Medicine and Miracles wrote that compliant patients die on time. I work to stay as non-compliant as possible.
Don’t assume just because the last 5 days were bad that today will be the same. Examine what is really happening and go for that. You do not need to explain to anyone that you are having a good day. “
Want to read more articles, check out my youtube videos and get notified when I launch another online group class? Sign up for my email list!
Does Stress Get to be Too Much For You? Sign up for the next LAUNCH of our first 6 week online course: STRESS LESS: Secrets to Stress Management