Before becoming disabled due to chronic pain, Jodi Cornelius was a bango-pickin’, backpackin’, tech editing, hard working dynamo. Read how her life has changed.
My Life As A Chronic Pain Sufferer
by Jodi Cornelius
Imagine, waking up one morning and discovering that your life has been slowly changing – and not for the better. Imagine what started out as an innocuous minor pain turned into a pain that keeps you from performing your everyday life without taking pain meds and muscle relaxers, anti-depressants and anti-anxiety medications. Doctors shuffle you from one specialist to another because the neurologists say it’s orthopedic in nature yet the orthopedists say it’s neurological in nature. Here is my story…
In 1995 I was involved in a rear-end collision. I was stopped for a flagman on a mild curve waiting to be allowed to go. Suddenly, from around the corner comes an 82 year old man who never saw the BIG orange diamond shaped signs signaling that there was road construction ahead and also a flagman and to slow down. He rear-ended me doing 50 mph and never touched his brakes. My car stopped his car and kept him from slamming me into the flagman. I had my left arm out of the open window because the weather was really beautiful and was kind of slid down into my seat just relaxing while waiting. I happened to glance into the rearview mirror just in time to see the car coming. I don’t remember much after that. I had my youngest son in the car – he was 12 – and he said that I sucked in a big breath, yelled hold on, and flung my arm in front of him to hold him in place. Fortunately we were both wearing seatbelts.
Because he didn’t see what was happening, he made out really well. No injuries that we knew of (although later down the road we found out that our internal organs aren’t quite where they are supposed to be due to the heavy impact and the scar tissue that has “moved” them around a bit) and since we were so close to my sister-in-law’s house, he ran down to get her to call the police.
As I sat in the car, I saw the older man sitting in his car with his airbag deployed and making no effort to get out of his vehicle and away from the chemicals from the airbag. As I tried to get out of the car, I realized that the door jamb of the car had slammed into my left elbow (he had apparently tried to avoid the car instead of slamming on his brakes or else it just happened to be the position he was in when he hit me and he collided with the left back half of the car), my left knee had been slammed into the dash, the seatbelt had ripped into my left shoulder (which was fine because that kept me from being flung through the windshield) and the driver’s seat had been shoved into the my left hip. But at that time, I didn’t feel much of anything – I just wanted to get out of the car and see if I could get that older man out before he got sick from the airbag fumes.
Shortly after that, the police and an ambulance showed up. They went over to see the older man and see how he was doing and when they came to see me, I slowly started sliding down the side of my car. They got me on the ground and asked me where it hurt. I kind of kidded with them and said “Everywhere, of course” and then proceeded to tell them where I thought my injuries were. They put me in a neck collar and took me to the hospital – my car, at that time, was not drivable because the bumper had been shoved forward so far that it was keeping the tire from turning.
I was diagnosed at the hospital as having a badly bruised elbow, knee, and hip, with mild to moderate whiplash. It took me about a year to recover from the accident but after that I was mostly fine. No real major problems although I continued having knee surgeries on my left knee every 3 years or so needing to clean it out and started having some major reflux problems that caused GERD and it was later discovered I now have Barrett’s Esophagus which is a pre-cancerous condition. It is unknown as to whether the accident had much to do with it. It is possible since my insides got a touch “rearranged” which was discovered when I had to have a Nissan Fundaplication done due to the fact my GERD could not get under control with medication and new spots of Barrett’s continued to show up.
Then, in 2005, I woke up one Monday morning to get ready for work only to find out that I couldn’t get comfortable unless I placed my left arm over my head and rested it on top of my head. I was a cylindrical press operator at the time and there was no way I could do my job, or any job, in that condition. So I went to my chiropractor and he ended up making it worse. I called a different chiropractor and she sent me in for x-rays which showed that I had degenerative disc disease in my neck and proceeded to do therapy. When that didn’t work, she ordered an MRI done to my neck and discovered that I had herniated discs with mild impingement at C3/C4 and C4/C5 and herniated disc with significant impingement at C5/C6 and C6/C7. After some physical therapy, it was determined that the PT wasn’t doing what was needed so surgery was scheduled. My neck was fused with bone from my hip and a titanium plate at C5/C6 and C6/C7.
I finally had the surgery and once I recovered from it, I was ecstatic with the results! No more pain in the neck — outside of my husband and occasionally my kids and grandkids; no movement issues other than an inability to look fully to the left, which was totally acceptable to me. I was very happy.
About 5 to possibly 8 months later, I started developing a problem in my left wrist. It would get a sharp pain in it which would cause me to drop stuff. I wasn’t concerned because it wasn’t happening that often so I just contributed it to the fact that it was part of my job. Then I started getting muscle spasms in my forearm muscle that would cause my arm to draw up similar to that which happens to stroke victims. I would also get triceps spasms which would lock my arm in a straight position that I would be unable to bend. Both types of spasms were severe enough that I would have to have someone else straighten or bend the arm to break the spasm. This developed into difficulty raising my arm above my head. It also caused weakness in my left arm and a sharp pain behind my left shoulder blade that felt like someone was stabbing me with a red-hot poker.
I went to my surgeon to tell him about my problems and all he told me was the fact that his surgery was perfect, which I agreed with, and there was nothing he could do. This went on for about 2 years before I finally said “enough.” By that time I was in so much pain I was crying from it every day (and I have a very high pain tolerance). The general practitioner prescribed me Tramadol, and Hydrocodone and neither of them did anything for me so all this time I was dealing with a major amount of pain without any relief. It was during this time that we discovered that I have a high resistance to medications so meds that would sedate an elephant would have no affect on me whatsoever.
This, of course, led to a difficult time trying different pain medications due to the fact I live in a small town and there were no pain management clinics close-by to make sure that I wasn’t just a “drug seeking” addict so all I could get prescribed was Hydrocodone which was useless because it was like taking candy. I got to the point to where I said “forget it” when any new doctor would say “I can prescribe you Hydrocodone.” So for about 2 years I went through agonizing pain without any pain medication. Suicide began looking like a viable escape. If it hadn’t been for a supporting family, I wouldn’t be here writing this today.
I finally went to a neurologist in a larger city (I had refrained from doing this because riding in a car hurts me really bad and having to travel for 1.5 hrs to 2.5 hours one way is not a good thing for me) but I was to the point that I was ready to do whatever I had to do to get some help. So I went to a neurologist that my sister-in-law had gone to. Now, as I’m sure some of you reading this realize that once you’ve had surgery in your neck or spine, other specialists tend to refuse to treat you because they have to deal with whatever the surgeon did or didn’t do. But since my husband had taken his sister to one of her appointments he mentioned my situation to the surgeon and asked if he would look at me – if nothing else, just look at me and see if there’s something he can recommend. So I went to the appointment and he told me it wasn’t neurological, it was orthopedic. Here we go again. He sent me to a local (for me) orthopedist that I hadn’t been to before and that doctor gave me a shot in my shoulder and scheduled me for an MRI. He got the results and told me that I had a minor rubbed spot in my rotator cuff and that since I hadn’t gotten any good results from the cortisone shot then he couldn’t do anything for me. Naturally, I cried. I was so depressed and so upset that no one seemed to be able to help and no one seemed to even care.
I called the hospital where I had the MRI done and asked for a copy of the MRI and the doctor’s report that went along with it and discovered, myself, that not only did I have a “minor” rub spot in my rotator cuff but I actually had, according to the report,”…a partial-thickness tear of the surpaspinatus tendon just before it’s attachment to the greater tuberosity. A frank complete thickness tear is not identified. There is a signal void in the supraspinatus tendon, which conceivably could represent calcification, which would be better seen with a plain film of the left shoulder. There is considerable DJD of the right AC joint with significant osteophyte extending inferiorly from the joint, which depresses the musculotendinous junction on the surpaspinatus tendon indicating a high likelihood of impingement syndrome caused by this osteophyte. The bicep tendon appears intact.”
In English, that means that I had a tear in my rotator cuff, not a minor rub spot, as the doctor said, I also have significant DJD (Degenerative Joint Disease) that the doctor didn’t even mention PLUS bone spurs rubbing on my bicep tendon.
So, in tears again, I got another appointment with my “new” neurologist and brought my MRI report for him to look at, hoping that it would be something that would tell him “Oh, yeah, okay now that we see this, I see what we need to do.” Instead, what he told me was the same thing he told me before – I need an orthopedic surgeon and I burst into tears in front of the doctor when he said that. I told him the local doctors were either bad or just not caring and I had no idea what to do or where to go and he recommended the orthopedic surgeon who did his wife’s knee. I said, fine, I am at the end of my rope and the office called and they scheduled me within a few days. The neurologist sent a personal letter to the orthopedic surgeon explaining all that had happened and the orthopedic surgeon looked at the MRI that I had and pretty much said the same thing. He couldn’t do anything but give me cortisone shots and see what that would do for me. But then he did one of the best things I’ve ever had done for me during this whole time. He sent me to a pain management clinic that actually believed what the ortho doc told them. He told them I have a high tolerance to medications and that they may need to do a lot of trying out various medications in order to find the right combo without making me look like a drug addict. We’ve worked around quite a bit with different medications and we’re slowly getting closer and closer to getting the right combo – and this has been going on for over a year. But the pain levels weren’t going down that well with the meds that were being issued. The doctor gave me a couple of lidocaine shots in the bad areas in my neck and shoulder and while they helped a little bit, they still didn’t do the job. I was still unable to move my left arm outside of my waist area. To raise it caused intense pain regardless of the meds.
So the pain management doctor told me, if I didn’t have surgery done on my shoulder then we would be unable to go further. My orthopedic surgeon didn’t want to do it because he knew that it wouldn’t work and fix my problems. After the comment from the pain management doc, I made an appointment with the ortho doc and told him I realized that the surgery wasn’t going to “cure” my problems but with what the pain management doc said, it needed to be done in order to rule out shoulder problems.
The ortho doc told me “you do realize that your problems are not going to go away, right?” And I told him yes, I understand but whatever help it gives me has to be better with what I have going on now.
So he did the surgery, and once again, it’s a surgery I wish I had done way back when. It’s a surgery that, once the doctor got in there, he realized that had my shoulder surgery been considered the first time I had started having problems and had the original doctor moved away from my “perfect neck surgery”, I wouldn’t have had the problems I had. Had he gotten in there and done exploratory when I was mentioning my problems, he would have discovered a small bone spur that could have been removed, a small tear or rubbed spot in my rotator cuff that could have been repaired or eased, and a little bit of arthritis that could have just been given cortisone shots on a regular basis and ¾ of my problems would have never developed. But because the proper attention was not paid to my complaints, when the surgeon got into my shoulder to fix the minor tear and remove the bone spur, he found a surprise waiting for him. My “up to 2 hr” surgery lasted 4 hours. When he got in there, there wasn’t one minor rub/tear in the rotator cuff, there were 2 significant tears. Not only was there 1 bone spur, there were 3. Not only did I not have a slight rub on the bicep tendon, the bicep tendon was so worn they had to remove 4 inches off the tendon and reattach the tendon to the top of the humerus instead of back where it belonged. They removed 1 inch off my collar bone due to arthritis and generally just cleaned everything up.
Once I recovered from THAT surgery (let me tell you – if you have to have rotator cuff surgery and people tell you it hurts like crazy – believe them! But I would do it again in a heartbeat.) I can now raise my arm over my head which I had been unable to do for over 2 plus years. I can open cupboard doors over my head, I can adjust the showerhead. To me, these are short of a miracle – just ask someone who suffers with arthritis and has been given something that allows them to finally take the lid off their medication with a minimal, if any, amount of pain. It’s wonderful! Now, I can’t do much with it other than that. I can hold stuff so long as my arm stays by my side. I cannot take a cup or bowl out of the cupboard without fear of dropping them. If I grab a bottle to drink out of or a cup to drink out of, I have to switch to my right hand because I’m liable to either drop the item, or spill it because the spasms can strike making my hand shake.
The weakness I have mentioned is all throughout the left side of my body. I still have the red-hot poker in my left scapula that no one can explain. No one has explained the weakness that I have. No one can explain the nerve pain I get in my shoulder. No one can explain the severe neck pain that shoots up through my head and out my eye with no warning. I can’t get an explanation as to what is going on with my left hip – one says it’s arthritis, another says it’s my sacroiliac joint. But neither doctor nor therapist has helped it. My left knee needs replaced but I’m too young, although I’m sincerely hoping that since I’m now 49 that this will change. I will wake up screaming in the night with the inside of my left knee burning so bad I can’t straighten it out. I have to hook my right foot behind my left ankle and straighten it out that way. Because of this, I must use a cane when out in public because I lose my balance fairly often and that’s the only thing, outside of my husband, that keeps me from falling. However the only good thing on my left side is my left ankle, which I probably shouldn’t mention because it’ll jinx it.
Every morning, I take my pain med, my muscle relaxer, my anti-depression med, my anti-anxiety med, my acid reflux med, my cholesterol med, and my mood stabilizer in the hopes that I don’t go off the deep end. Some days, you just wish something would happen and you just wouldn’t wake up the next time you go to sleep. Other days, they aren’t too bad – they’re actually quite good, relatively speaking. But most days are the days that chronic pain sufferers tend to deal with — it’s not a “good” good day, but it’s not a “bad” bad day – like the chart in the hospital – we usually run between 4-7 on our “normal” days.
A lot of times I get asked “How do you deal with this every day?” from people who know me. I just tell them God blessed me by making me highly tolerant to pain. I mean, if He’s going to make someone “highly tolerant to pain” seems to me it’s better to give it to someone who’s needing it than someone who’s always healthy, right?
But those of us chronic (or ongoing as I’ve heard a lot of people mention) pain sufferers who have no external signs (in my case, I just have a cane and I limp – there’s no visible injury or anything like that and nothing visible to show all the rest of the stuff that is wrong) that anything is wrong with us, we get slapped with a “you’re just trying to get sympathy.” Or another good one is “you’re just a hypochondriac looking for attention.” Those are the ones that make you want to knock their heads off their shoulders and send them on their way. Now you may think that sounds brutal, but when you suffer 24/7, 7 days a week, 52 weeks out of the year with NO breaks from pain, to have someone look at you and say “There’s nothing wrong with you. Why don’t you just get a job and stop sucking money out of us taxpayers!” — well, that cuts pretty danged deep. Because for me, personally, I busted my hump for my last employer and had been with them going on 9 years and had planned on making it my retirement job when all this crap happened. I loved my job. I still love my job. If I could be healed right now, I’d immediately go back to my job and see if I could go back to work there. I’ve paid my dues into the Medicare and disability programs. I didn’t just decide one day, enough working – I want “free” money. No, I struggled to work until the doctor flat out told me I had to stop or end up possibly paralyzed. What choice would YOU make?
So for those of you reading this (should this not end up on the cutting floor) who happens to be fortunate enough to not be dealing with chronic pain and who happens to see someone park in a handicap parking space who appears to be healthy, think about it before you condemn them. Maybe they aren’t as healthy as they look. Think about it the next time you go to the doctor’s office and you see someone with a Medicare or Medicaid card who doesn’t look like there’s much wrong with them. It may not be a real noticeable thing but it’s still there, regardless.
And know that for all of us who are suffering on a day-to-day basis with a legitimate chronic pain problem, none of us want to be in this situation.
Pain not only hurts, it’s depressing to the point of suicide and it takes away all the things you used to do before all this happened. (I played the banjo and loved to backpack neither of which I can do any more.) You tend to be stuck in the house by yourself because friends don’t know what to say to you so they stay away.
But know also, there are a lot of us, myself included, who try to find humor in our lives, making fun of things that happen to us. I never go into a doctor’s office without kidding with the nurses and the doctor and trying to stay upbeat because I refuse to allow my life to be ruled by pain. I still go out and do things that I know I’m going to pay for the next day or even that evening and will probably pay for for days after. And while I don’t do it often (I’m not a masochist!), I do enjoy my time when I do decide to get out of the house and go on a trip even when I know it is going to cause me pain. My pain is not going to rule my life, I am going to rule my life and deal with the pain as it comes.
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