A Different Kind of Pain

Sometimes it seems as though you’re on a roll. The heavens are reigning sunbeams down upon you. You feel happy, content, and warm. Ahead, you see only clear, blue skies. Seemingly nothing can go wrong in the foreseeable future.

Granted, that’s not been my lot in recent years, but I’ve had periods of time when I was at least somewhat content. Lately, though, the dark clouds won’t seem to part for me so I’ve had to call upon my lifetime of experience and seek shelter from the storm of what-ifs that have begun creeping into my thoughts. What-ifs are opportunistic vultures that circle about your ramblings ready to prey at any moment. You can’t completely shut them out, that’s not realistic, so you must manage them.

Managing what-ifs is hard, and it’s a learned skill. You have to reflect on your most difficult times, preferably those more common in nature to what is causing the challenge at hand. Focusing on how you previously managed some of your most formidable hurdles, and applying those coping actions to your present circumstances is how that works. This all sounds so practical and easy to implement. In theory, it is, in reality, it’s something else entirely.

After an unexpected month of distractions, I was ready to dive back into reading and writing on Medium. Just as I began catching up on my reading, I was struck down with a pain I wouldn’t wish on anyone. I’m all too familiar with this having dealt with it thirteen years ago. It’s most likely more herniated discs in my neck. Previously, after battling them for eighteen months, I had broken down and had the surgery I needed to remain functional. Herniated discs can lead to paralysis if left untreated. I had already begun to lose control of my left hand and the pain became unbearable.

This time, I waited a day, hoping I had slept the wrong way, but the pain overwhelmed me. Reluctantly, I called my sister to take me to the hospital. The last MRI of my neck was exactly two years ago. I had gone over it at that time with my neurosurgeon and knew things were deteriorating. However, I needed a current MRI in order to see him and thought with my history surely they would give me one at the hospital. But I was wrong and left there much worse off than when I entered.

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I was able to get a CT scan and had had one of those on my neck annually for three years prior, so they were very easy to compare. But CT scans don’t pick up what an MRI can. It showed dramatic slippage of a couple of other discs but didn’t pick up enough to show a herniation. I was asked at the hospital what I was taking for pain and informed the person in charge of my care I was taking Dilaudid (Hydromorphone) Dilaudid is a strong narcotic, one reserved for the very worst pain, when dispensed for home care. But the Dilaudid I used for emergencies wasn’t managing this pain, I explained.

Guess what they gave me to better manage it? Motrin. That’s right. One of the strongest narcotics available for off-sight use wasn’t knocking down my pain so they thought Motrin would. I was beginning to become alarmed. No pain medicine? No MRI? What was going on here? I am surrounded by Duke and The University of North Carolina, and their hospital systems, and I was in one of them! Yet I was also surrounded by incompetence to a frightening degree, and it gets worse. It turns out another medicine was also prescribed for me but I never received it. Someone made a mistake upon entering the prescription into the system.

I won’t elaborate on further shortcomings of my hospital care other than to say I was thankful when discharged, and had orders to see my neurosurgeon. The following day I was at my neurosurgeon’s office. He was in surgery, but Dan, his very competent PA, was caring for me as he had at times, before. I could barely move, even with a neck brace and cane. Dan studied the recent CT scans, and last MRI, and was convinced at least one other disc was herniated. He put in an order for an MRI right away and hoped I might get it that day.

Two days went by with no word of an appointment. Dan had refilled my Dilaudid but it wasn’t helping much and I don’t like to take drugs like that any longer than necessary. However, with no MRI appointment, and no lessening of my pain, I had no choice. The following day, I called my health insurance company to make sure they received the request for an MRI. No, they had received nothing but told me I didn’t need prior approval. I didn’t think I did but was covering my basis. Next, I contacted the radiology office where Dan had sent my MRI order. They claimed they never got it. So, I called my neurosurgeon’s office.

They took over at that point and miraculously were able to assist the radiology office in locating the order, which had then been there for three days. They called but told me I would have to drive to another city to get an MRI this week. Nope, I told them, that’s ridiculous. I should have already had the MRI. I was in far too much pain to tolerate such a ride. Then it would be some time next week they said. Furious, I told them to forget it and called my neurosurgeon’s office once again. They transferred the MRI order to a larger radiology office, who likewise claimed they had no order for me when I called them.

No exaggerations here, unfortunately. I was told to call back in two more days, which would allow them time to process it. I knew better and called the next day. Voila! They found it! I was given an appointment two days later, at least slightly better than next week. In the meantime, Dan had called, horrified at the incompetence and neglect I had experienced. I’m supposed to get that desperately needed MRI tomorrow!

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Then my neurosurgeon can read it and decide if I need surgery or another plan of care. I don’t want to go through that surgery again. It’s tied with my second rotator cuff repair as my all-time most painful. But, I might be better off, if that’s his suggestion, and going ahead with it.

A side note: I’ve suffered nine fractures, some requiring surgery, a twice ruptured left Achilles tendon, three shoulder surgeries, two of which were a right rotator cuff repair, gall bladder surgery, and eight bone spur removal surgeries. Also, sight-saving surgery due to acute narrow-angle glaucoma.

So I’m no hospital or surgery novice. What has happened to the standard of care I had come to expect from professional medical staff? Did so many quit during the pandemic that they’ve had to be replaced by inferior personnel? A couple of people I spoke with during this ordeal sounded somewhat challenged. I’ll add nothing further in regard to my opinion on that subject.

I will say this. Until the last couple of days, I’ve been in some of the worst pain of my life. It’s mercifully backed off somewhat, and I’m off the Dilaudid. That kind of pain makes anything extra you have to do much more difficult, you’re functioning in survival mode. Yet I had to advocate for myself every step of the way. Every call was a monumental task. Severe pain wears you out, you have no resources left to do battle with incompetent individuals.

This pain made me scream out loud. It completely broke me. Never mind writing, I couldn’t even read anything. As time ticked by and it became apparent if I didn’t help myself I would receive none, I became angrier and angrier. Each call took every ounce of strength I had to manage. Exhaustion washed over me in waves. At one point things were so touch and go for me that I considered calling an ambulance. My sister confessed she was afraid to call and check on me. She thought I was going to die.

It’s been close to two weeks since this saga began. Who would have thought living in one of the most well-staffed areas in the country for medical care, I would have to wait more than a week for an MRI? Or leave a major hospital in worse condition than when I entered it? Not be able to obtain basic healthcare, essentially? Things are horribly broken. Pray that you don’t become seriously ill or need the attention of a neurosurgeon.

I believe eventually I’ll get the care I need, my doctor is highly skilled, and I’m fortunate to have him. However, you shouldn’t have to wait weeks for this level of care or suffer in pain that literally makes you scream out loud. This is America and we’re supposed to be able to care for our sick with acute issues quickly, not brush them aside for weeks! Except for Dan, no one I spoke to seemed to care. Their tones were icy and indifferent.

I’m grateful for my past pain and suffering. I learned coping skills that helped me withstand what I’ve had to endure this past almost two weeks. I’m afraid though. Afraid of what might be down the road for me. If I do need more surgery, this will be the first time I will ever have entered the hospital seriously wondering if I’ll survive my stay. And what if the discs aren’t quite bad enough to fix? Will anyone even care that I must live with this level of pain? Probably not.

I think that’s the worst part of all of this. Worse than the incompetence, it’s the indifference. Life lessons include reading moods from the tone in a voice you hear. And aside from Dan, all I heard was indifference. I don’t think any other person I encountered cared about me, even a little. Knowing you don’t matter is hard to accept, but I’ve had to.

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This post was previously published on medium.com.

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