As part of an ongoing series, I am interviewing people with chronic illnesses and telling their stories. Today’s interview is with Ruth, who suffers from chronic pain after an accident at work almost 30 years ago.
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What is your first name and age?
What is your chronic illness/injury?
Almost 30 years ago I was injured while at work. I slipped and fell and had severe lower back pain. However, every doctor I went to through workers compensation basically told me that it was all in my head and that there was nothing wrong with me.
It wasn’t until about nine years later when I went to an independent doctor that I finally found out what was going on. When I fell, I ruptured a disc in my lumbar spine, forcing it onto my sciatic nerve. The doctor put up the first images I had done and the one that he had just ordered and they were identical, meaning that any of the doctors I had seen in the years previously should have seen this and done something about it.
By the time I got adequate treatment, it was too late. Scar tissue had developed and was wrapped around my sciatic nerve. I underwent a surgery to remove the ruptured disc, but refused the procedure to remove the scar tissue, as there was a very high chance that it would leave me paralyzed or in worse shape.
Since then I have discovered that the meniscus in both knees are torn, there is no more cartilage and there are Baker’s cysts in both of them, among other problems. Because I am uninsured and unemployed, however, I cannot do anything about it.
When were you diagnosed?
For my back I was diagnosed in 1998 and my knees were diagnosed in 2009.
What are the symptoms you deal with?
Constant pain in both knees, my back and down my right leg. It is always there; it never goes away. I can’t walk very well or for very long and I have trouble with balance. I have to sleep on my back because it’s too painful to sleep on either side, so I often have headaches stemming from a crick in my neck.
I also have emotional symptoms. I’m depressed and angry and anxious, especially now with all of the opioid laws. I hate that I can’t work and after being denied for SSI four times and by a judge, I don’t know what I’m going to do.
What alleviates your symptoms?
My medications, propping my legs up with a pillow under my knees, sometimes stretches help, but not always. I have my heating pad nearby at all times.
What exacerbates your symptoms?
Everything? No, but really most of the things I do during the day flare up my pain. If I clean the house I’m on my feet for too long. Walking to the mailbox hurts. Sleeping hurts. I can’t go anywhere or travel because being in a car for just a short period of time hurts.
What is something you wish people understood about your illness/injury?
I’m not useless just because I can’t work. Also, I would love to be able to go back to work! I hate that I have to depend on my children to take care of me financially. I would love to have the independence of a job. I’m not just on a constant vacation.
I also want people to know that the medications I’m on are the only reason I’m alive right now. You may have your preconceived notions of what I’m taking and how it affects me, but until you’re in my situation you have no clue how much they help. If you aren’t a chronic pain patient, don’t judge those of us who are. We would love nothing more than to be normal.
Before my accident you couldn’t slow me down. I built a house when I was 21 with my bare hands. I raised three children and wanted nothing more than to be the mom I once thought I could be. The pain has taken pretty much everything away from me. I’m not lazy. I’m not an addict. I’m in pain.
In which state do you live?
Have you been affected by opioid laws in Florida? If so, how?
Oh, yeah. I’ve been seeing the same doctor for over 20 years and have been on the same regimen for about 15. I’m 60 years old and have been on these medications for decades, yet I was told at my last visit that I will be having my dosage cut by more than half over the next few months. Why? Because of pain-free legislators and politicians who want to look like they’re doing something about the opioid overdoses.
I’ve never failed a drug test. I’ve never asked for more medications or for them early. Yet, here I am about to be cut down to almost nothing. They want me to try medical marijuana, which I am perfectly fine doing, but I can’t afford it. Right now I get my medications through a program that allows me to pay a very reduced price for them.
I can’t even tell you how scared I am for my future. I can’t live in the pain that they’re going to allow me to be in.
Do you have any advice for other people going through a chronic illness/injury?
If you know something is wrong with you, fight to find someone who will believe you. Get a second opinion or a third or a fourth; whatever it takes. Don’t let anyone make you think you’re crazy for what you’re feeling. It’s your body and you know it best.
If you are on pain medications, be prepared to have them taken from you. We are fighting, but we don’t have public opinion on our side because they’ve all been brainwashed into thinking we’re the problem.
Most importantly, you’re not alone.