AGITATION, IRRITABILITY, AND MY BACK PAIN IS DRIVING ME CRAZY

 

Remember that closing scene in the film "Private Ryan" when the old man at the cemetery with his family asks his wife...and I'll need to paraphrase...' Jean, Have I lived a decent life? Have I been a good man?'

Of course, the feeling is that yes, he lived a good life and he was and is a good man. So, he had answered Tom Hanks' plea to 'Make this worth it....'

Personally, these recent days and weeks of my lumbar pain has me asking myself, "Why me? I've lived a good life. No criminal record, no history of cheating on the wife, no stealing from places of employment, no taking out my revenge on people who have screwed me over for this & that over the decades. Overall, I think I'm a decent, honest, regular guy.

So why am I shaking and shifting in my seat, my bed, sitting up, lying down, and pretty much always getting torturous exacerbations of lumbar nerve & disc issues EVERY DAMN DAY & NIGHT? What did I do?

I'm making a fist now, sticking to the number of pills I am allotted each day, and needing to double-up to keep from shouting. But if I take more now to stop the pain for a few hours, I'll just have to take less on a day or days before the end of the month. God forbid I get enough of an Rx to help me have a life. I'm invited to a big family dinner at a fancy restaurant next week but I can't go as I won't have the extra tablets to get me through a drive to dinner, a long dinner, then home. And if I do take double the medicine to keep me from squirming & bouncing around in my chair...yep, my spastic movements are quite obvious to people nearby...and more pills make me say stupid stuff...then I'm short for another day.

I've used my TENS unit stickers at high level so much that the skin is burned. I alternate hot packs, frozen ice pads, braces on and off, hanging upside down on my teeter table to relieve pressure on my neck and lumbar nerves. But I'm moving toward losing my ability to hang in there with living the life of pain that only gets worse over time. But my medicine does NOT get thy biggest worry is the week of horrible post-op pain and the conflicts that will come over getting prescriptions for hydrocodone tabs. The institutions involved don't communicate with any common sense, because that's the way our medical/legal/bureaucratic/pharmacy system fails to function for the good of the patient. 

Every health professional (???) in the system will remain within the letter of the laws and the post-op patient goes without medicine for a week or more. What a difficult challenge this is...

Why would an orthopedic surgeon honestly believe that a one-week supply of a moderate-dose opiate Rx is reasonable? Why do pharmacists...every doggone time...tell me that a message will have to be sent to the prescriber to inform him of the primary doctor's Rxs. This is not urgent for the retail pharmacist. The message may be a fax or electronic; the message will sit somewhere for an indeterminate time; a weekend may begin; The nurse on the prescriber's end may take a day or two or never return a response to the pharmacy. And these deficiencies occur every instance and the patient loses. 

I know many of you have it worse. Your pain doctor may require an office visit with a drug test and the office visit charge before generating a refill. Then you can enter into the pharmacist delay routine requiring the doctor to reassure the dispenser that you are an okay human being. As we know, we are all considered to be bad until everyone in the process proves otherwise. Such a disgrace!

EPIDURALS AGAIN

 

I got L-3 epidurals the beginning of July. After 5 days, they stopped helping to decrease pain. I had a few good days only.

I got bilateral L-4 steroid injections 5 days ago and the result is also lousy. Day 2 and 3 after injections had me decrease pain level by about 1/3rd, now I'm back to my customary Rx level. 

The doctor told me of bone spurs at L-5; I don't recall hearing that over the preceding years. 

I can't face another surgery at this time, along with the fact that there's no guarantee that metal discs at L-3 and L-4 would decrease the pain. It sure stinks to be my lumbar back. Day by day.

INSIDIOUS

 

On days like today and the past 3 days, this word 'insidious' surfaces in my thoughts again and again. INSIDIOUS PAIN.

I just read Merriam Webster's definition of the word and it suits nerve pain well--the chronic type that keeps you 'down in the dumps' and holds you down in pain quicksand. 

At its peaks, which are frequent throughout the 'bad days,' I unwittingly make a fist and the momentary thought of punching a hole in a wall from frustration struggles to become action. I suppress it. Been there and done that.

Insidious means something like a bad thing that is below the surface; it can't be observed, but it's negative and unwanted, and gradually, inexorably, gets worse & worse. That's my insidious nerve pain that lives at L-3 and L-4 bilaterally and has for 14 years or so. You know the deal. Doctor can't palpate it. You don't jump off the table when he presses on the spot like you would with an inflamed appendix.

But it lurks below, a coiled rattlesnake with a grudge against you, striking for a bite of you, then dropping back to watch you suffer with the damage. 

This is when the TENS unit electrodes get stuck on the area and the dial is turned up high. It doesn't relieve the pain; it only tries to distract you with a different buzzing sensation on the skin. 

After failing that, the 4% lidocaine lotion is rubbed in liberally. (Aspercreme). It doesn't do much, but perhaps a tiny placebo effect helps...

An ice pack or a hot pack over the electrodes next. 

I wrap that combo up with a velcro elastic lumbar support, and over that I cinch up the hard brace, you know the one they put on you after your surgery.

Damn it all!

Bilateral Steroid Epidurals at L-3 Level

 

The day of the shots brought a higher pain level, then days 2 and 3 did not bring any pain. I had 2 pain-free days...well on day 3 I had some pain, but much less than my daily levels.

Day 4 the lumbar pain returned half-way and day 5 put me back with pain that was at a little less severe than customary levels.

We'll see what the second week brings.

I don't know what else to add, other than having 2 pain-free days was some sort of a blessing.

Life without pain is sooo different.

Epidurals to be approved by HMO, then scheduled.

 

Looking forward to epidurals the end of next week. Months have slipped by me and I can't remember my last epidurals. I need them badly.

Tonight I'm going crazy with my right lumbar nerves L3 and L4 getting compressed or contacted in the typical manner they do. 

TENS unit on for hours today; elastic lumbar support snug; hard lumbar brace on and off throughout the day.

Ice pads on and off today, as usual; I've been trying the hot pads that go in the microwave for a minute, then put over the electrodes & strapped under the elastic support. 

It all really doesn't do jack shit but serve to distract me at times from the piercing nerve pain. Rx meds also daily but they don't do more than give me a couple of hours of relief.

I checked the mail tonight and the university magazine arrived from the school I attended. It comes every 3 months or so to alumni. I read a brief article inside about a psychological researcher at the university who was involved in a formal study of chronic pain patients--only a few specific types of conditions--that reported benefits of pain relief with cognitive therapy and hypnosis.

That type of stuff really ticks me off. Why are these academics making light of pain conditions that debilitate and cause loss of employment, along with depression that often accompanies the endless pain. 

Maybe you fellow pain people have been through these recommendations for your pain. Only a pain-free person with some goal or objective would sell these ideas. Such garbage...

VA Staff Cutbacks

 

I am a peacetime veteran with a service-connected disability of 70%. 

Accidents while on active duty have led to 3 spinal operations. 

I hurt a lot every day. 

Due to the very noticeable staff cutbacks at the VA Hospital in La Jolla and the Oceanside, CA Clinic, we patients are experiencing significant delays in obtaining medications, treatments, scans, and appointments. Really excessive waits. My respect & thanks to the hard-working, professional doctors, fellows who have no power to speed things up.

It is all unnecessary and directly a function of this president's seemingly complete lack of caring for Americans.

I'm currently waiting 6 months for a cancer injection of a medicine for a recurrence of a cancer. That's a long time.

For the last week I have been experiencing my daily severe pain levels which my great doctor at the VA prescribes for me monthly. If only the pharmacist barriers would stay out of matters about which they are ignorant, i.e., a patient's medical history.

Due to his increased workload with the budget cuts, he just cannot keep up with the extra demands on him, and I know he does his best. He is an empathetic, caring doctor...my best VA primary doctor yet. His prescribing is stonewalled by pharmacy personnel lacking common sense, it seems to me.

With plenty of days ordering ahead, and with the La Jolla pharmacy putting up roadblocks for doctors, I find myself without pain medication. Seven days and counting, and I wait and worry. 

This is a very common practice in pharmacy, always has been since I worked retail in the mid 1980s.

If the reader is a chronic pain patient, you know the drill. My emotions tell me to get angry and fire off a nastygram but that would be the kiss of death.

I often wonder why those professionals and technical staff whose job it is to interact with patients ASSUME at the outset of an encounter that the patient is a bogus skell with a substance problem...that type of person is a rarity; I know from 30 years pharmacy retail.

I am thankful for our VA staff because they almost always are kind and understanding; however, they are now under strain at work trying to keep up with less staff and more work.

Our local Congressman Mike Levin has been actively arguing to restore and improve health care and disability processing. Two weeks ago, I emailed him with a complaint that the water fountains at the clinic entrance were broken for several months. He or his staff did something and the water fountain has been fixed. Isn't that a shame...

I Can't Stand the Nerve Pain Today

 

Recovering from a few things, today I made the decision that I'm gonna' call my Orthopedic surgeon and see if he'll schedule me again for the lumbar disc replacements.

I hope I don't have to go through the BS of authorizations again from the beginning. 

I chickened out of the ALIF surgery mid-August 2025. I don't want to do it but living with daily lumbar nerve compression is making me angry when it persists for hours and consecutive days. 

I'm over my pain med limit and need more. Damn. 

Fuck it!

Too pissed off to write.

CANCER RADIATION PAIN

 

    I'm finished with my 32 radiation treatments for my medullary thyroid cancer, stage 4, and the horrible neck skin pain is gone. But as I massage the Aquaphor ointment into my tight neck skin a few times a day, I realized that I only shared some photos of the radiation damage to a few family members.

The photos are a shocker, so I'll post a few here now. Today is a month after treatments ceased. 

If the pictures allow the reader to zoom in, the damage is rather interesting. When I was told about the need for treatment, I had no clue how painful the 7 weeks plus a few more weeks after would be. 

And try to get some strong pain medication...good friggin' luck!

I learned so much about the negative dominant atmosphere in pharmacies and the callousness that exists in the soulless pharmacists working in our world today! They are a disgrace to their job. Institutional and retail chain pharmacists are dominated by jerks.

I showed this neck in person twice in a pharmacy that had my doctor's order for a pain Rx, perfectly legal, necessary, and legitimate Rx, and got nothing! Just treatment like I was a criminal. 

Procedure: Oncologist electronically transmits 100 ml oxycodone liquid 5mg/teaspoon. Twenty doses. Not much for weeks of severe neck burns--and the radiation burns are INSIDE the esophagus too.

Go to chain pharmacy.

Stand in line for 10 minutes.

Get told the doctor has to verify the Rx so go away. There is no actual speaking to the prescriber, only emails and faxes which don't tend to get answered. 

Next day. Pharmacist again tells patient he's waiting for the doctor to call back. Sure.

I call doctor and can only leave a message with his nurse. Good luck with that.

A couple days later after a treatment, I catch the doctor and ask him if he will actually phone the pharmacist. Yes, he does.

Later that day at pharmacy. Told that doctor called but the Rx not ready.

Next day in pharmacy. Wait the ten minutes as usual and observe the generalized APATHY of the pharmacy workers. No, Rx still not ready. Insurance problem.

On and on until I give up. Even the gargling of viscous lidocaine for the throat pain, which is severe, is a holdup for a few days. 

Why?

HOW ABOUT PAIN DURING CANCER RADIATION?

 

I get so many weird conditions that it's really quite ridiculous!

I'm experiencing post-surgery cancer radiation at a very nice Scripps place in Vista, CA.

My course is 33 total, and I have done 16 treatments.

It hurts!  When the surgeon removes one's thyroid gland and several dozen lymph nodes in the general area of the neck, that's rough enough with the healing process.

But this burning and severe pain INSIDE the throat and esophagus is much worse than I anticipated. The external skin burn is tolerable with lots of Aquaphor ointment slabbed on a few times a day, along with ice packs.

I have ice packs and soft & flexible ice pads wrapped around my neck in front most of the day, tied on, and when I try to sleep at night. The ice helps.

A positive aspect of pain in different body areas is that it takes one's mind away from the lumbar & neck pain that is a mainstay of my life. 

Radiation victims--you have my empathy!

A BAD PAIN DAY

 

Today's pain is the same area and intensity as my December 5th post. Right side lumbar nerve spot. 

Do you get aggravated quicker by little things when in this state? I suppose you do. How could you not?

I won't say more because I'd regret it. 

I've tried gabapentin a few times over the years and am thinking about it again. Last time I brought it up with my doctor I was told it would be a problem with serotonin drugs. Not true but one better not argue with the doctor who controls the primary pain Rx.

Something will move a tiny bit and I'll get some relief. You know the deal.

The nerve from my thyroidectomy in the back of my neck has gone intermittent, thank goodness. I wrap my neck always with a folded up t-shirt for neck firmness or wear the hard neck brace but I think whatever hit that nerve during dissection of lymph nodes is healing, getting less inflamed. Something positive in the whole circus of my physical body, anyway.

A NEW STRIP OF NERVE PAIN IN MY NECK FOLLOWING A MAJOR SURGERY

 

It's been a while since I posted about chronic pain. My lumbar nerve pain continues unabated, temporary relief only from a prescription med, TENS unit, ice packs, braces/supports, NSAIDS, massager device.

Since my last post, I got diagnosed with thyroid medullary cancer, a bad type, and had surgery for a total thyroidectomy with dissection of a large neck area to remove lots of lymph nodes from ear to ear, and extending from the top of my sternum to under my chin.

The gravity was a surprise, and a six-hour surgery is an ass-kicker, I can state. 

Something good happened in surgery. The aggravating pain from a neck side muscle since my last neck fusion is GONE. The guy dissected lots of tissue and I think he released or cut whatever little muscle fibers were causing me daily muscle pain in my left neck side with extension to headache. GONE.

Thank you.

However, a nerve behind my right ear extending down about 4 inches vertically has been on fire since the surgery. Some nerve got injured, a nerve that attaches to my hairline and is tender as a baby's butt--in a bad way. This nerve strip hurts like the devil! Dammit.

Today--I'm adding to this post Jan 2, 2026--I went to the radiation oncologist to get my face/neck mask made to use for radiation treatments that begin in a week. I am troubled by the misery to come--pain, rashes, dysphagia, tissue damage in the area to be irradiated. No choice. 

Getting fed up!