You may lose the battle but don’t stop fighting the war.

It becomes daunting, being a regular-ass person who has to deal with the American medical complex.

You may even consider yourself a reasonably intelligent and resourceful person, capable of functioning fairly well in every other aspect of life/adulting in general.

Maybe you’re like me, and you are fairly well-educated, have a good bit of life experience, have survived quite a bit and lived to tell the tale and so you get a little bit cocky about it.

Like, “What could they possibly throw at me that I haven’t survived, ducked, or dodged before?”

If you only knew. If I only knew.

When you are a chronic pain/back pain patient, nothing is reasonable. I hope that I can save someone else some of the mental anguish I’ve experienced by telling them this up front:

The system is designed to drive you batty, make you question yourself, and consider giving up basically every day.

You can’t. You have to keep fighting.

For yourself and your sanity and overall well-being, you have to suck up your pride and lick your wounds and keep fighting because if you don’t…no one else will.

“They” count on you giving up.

I am a survivor of things. I may not be the toughest broad on the planet but I’m no slouch. When I fail at something, or some circumstance defeats me, I’m usually pretty good about crying it out for a bit and then getting real pissed and taking care of business.

Every warrior has their limitations though, and advocating for yourself and your right to proper care and good health, especially in the American medical complex, can get real overwhelming real quick.

Those who have been following along know that I last worked on 6/20/17. My primary care doctor completed FMLA paperwork so that I could take time off of work to heal and recover from what was happening in my spine.

I have since been participating in aquatic physical therapy, spinal injections for pain management, transitioning to an anti-inflammatory diet, trying yoga out…basically anything that doctors, specialists, or my mom (she works in this industry as the Clinical Manager at a spine clinic back home) has asked of me I have tried to do and stick to.

I only have one physician writing my prescriptions, have avoided narcotic/opioid medications, and my family has no spent about $400 on CBD oil stock for me.

Outside of my physical recovery and rehabilitation I have also done all I can to keep myself and my mind busy and active on the couch and in my home, where I spend 90% of my time. I’ve invented my own brand and hashtags as such.

When my pain was overwhelming for me and I began to have thoughts of self harm I was honest and open with my doctor and we managed that.

I say all of that to say this:

It should be obvious to anyone at this point that I am actively participating and invested in my own recovery and I am not just a drug-seeking lay-about who just wants to “cheat the system” and collect disability checks.

I’m going to summarize for you a bit of what I have been up against since this all started.

It was May 8th when I walked into my doctor’s office, in tears, and said, “I know that we have discussed me not wanting to have to take narcotic/opioid medications to manage my back pain…it has suddenly become much less manageable and I’m scared and I think something has gone wrong. I can’t take this pain anymore.”

My PCP took x-rays of my lower back right then, stated that he was concerned because there was a disc that he could hardly make out in the x-ray, ordered an MRI, and wrote me a prescription for Gabapentin.

I had the MRI less than a week later.

I saw an orthopedic specialist next, I’ll call him Ortho #1, who spent all of two minutes in the exam room with me, looked at my images and said that he was the wrong guy to be treating me, ordered bilateral epidural spinal injections at my L4/L5 disc and sent me on my way.

I was in tears with pain and when I asked about FMLA and he said, “I don’t think we need to talk about that yet. I’ve only seen you this one time.” With that, he walked out of the room.

Next I got the bilateral epidural spine injections.

The day I went in also happened to be the day that my left leg went completely limp and numb and I couldn’t walk. Nathan had to push me around in a wheel chair.

Then came the three days of pure Hellish pain. The injections ultimately failed and only made my pain worse for a week. Also, the left leg continued to go limp and numb.

Next, I saw the spine surgeon — Ortho #2. I was in tears of pain when I saw him, as well. I had left work for the appointment.

He walked in and said, “I can see from your images why you are in so much pain, but I can’t help you. I would only make your pain worse. You’re not a surgical candidate.”

He then told me that I needed pain management, offered me narcotic medications as my long-term treatment option, got pissy with me when I refused, and referred me to the pain guy who he said was actually the guy who had done my spinal injections.

I asked about FMLA, explained how difficult it was to do my job which required a lot of driving, when driving and getting in and out of the car were/are the two most painful things for me and always exacerbated my pain and other symptoms such as numbness and tingling.

He said he wasn’t comfortable talking about that yet because he’d only seen me one time.

A few days later, I saw the pain guy. We’ll just call him The Pain Guy.

Again, I’m crying in pain. (I cried nearly every day from pain for probably about two months). This office has the worse effing furniture.

The Pain Guy prescribed 6 weeks of aquatic physical therapy, 3 times a week.

He didn’t want to talk about FMLA either, because he had only seen me this one time, if you didn’t count the time he gave me the spinal injections.

Are you seeing a pattern?

A few days later, on 6/20, I went back to my PCP, in tears, begging for mercy.

I told him that none of the specialists would put me off work on FMLA because they all said they’d only seen me once.

My supervisors and HR department, on the other hand, were insisting that I really needed to go on FMLA because I wasn’t capable of doing most of my job, the pain was just too much, and it wasn’t safe for me to drive in the shape I was in.

I further explained how bad the pain was, even with Gabapentin maxed out, the addition of cymbalta into my medication regimen, the flexiril, and the mobic.

My PCP read my job description, had me explain more about my job to him, and filled out the FMLA paperwork. He said it was obvious to him that I was in no shape to work.

I started aquatic physical therapy the following Monday.

Next, I saw spine surgeon #2/Orthopedic specialist #3, for a second opinion on surgery. He spent about 5 minutes with me, told me that he agreed with Ortho #2 and that it should take about 8-10 months for my discs to heal themselves naturally if I stuck with the anti-inflammatory diet and physical therapy.

I completed 6 weeks of physical therapy and returned to see The Pain Guy. He prescribed 6 more weeks of physical therapy and gave me a shot directly into my ass, to see if it helped the sciatic nerve pain. It did, for a week.

He ordered another set of spinal injections.

My PCP extended my FMLA by another six weeks.

Days before I was scheduled for more spine injections, my pain suddenly went back to being just as bad if not worse than when all of this first started back in May/June. It was HORRID. I thought I might die.

I called The Pain Guy’s nurse who communicated to me that The Pain Guy thought I may have had another herniation occur, but that he would treat it just the same as he was already planning, so try to hang in there and they would see me at the next injection.

I had the second round of spinal injections, went through living Hell for a few days, had four days of absolutely no pain, and then it all came back overnight. It was now mid-October and I was still in no shape to get back to work. My PCP extended my medical leave further and completed ADA paperwork for me.

I completed another 6 weeks of physical therapy.

On October 13, I lost my job.

I saw The Pain Guy’s Physician’s Assistant (PA) two weeks after the second set of injections and told her they’d helped but not for long, and that I’d lost my job and my insurance would be changing on November 1.

We scheduled my third set of spinal injections for October 31.

So far, the injection has helped and it’s sticking. That plus CBD oil has my pain much more manageable, though I am still taking all of the medications to keep it that way.

I tell you all of that to tell you this:

Yesterday I was informed that UNUM had turned down my long-term disability claim that was filed on September 26. (My former employer actually paid for this policy as they do for all of their employees.)

I was lulled into a false sense of security when a UNUM claims specialist called me on the day of my second set of spinal injections and explained all of the benefits of the policy to me.

I would receive 60% of my salary she said, job placement services provided at no cost if I ended up losing my job (I did) and free legal services if the time came that I needed to file for permanent medical disability through the federal government.

She said she’d been through back surgery herself not long ago and empathized with my pain and didn’t think it would be a problem at all for my claim to be processed.

Great! I can heal, and not worry about money! I can stop feeling like a burden to my family and just focus on the therapy and the healing! AWESOME!

Not awesome.

Here’s the catch:

All of those specialists put it in my charts that I was still able to work, even though they never once asked me about my job or read my job description.

My PCP was the one who put me on FMLA, and continued to extend it when it was clear that I was still in no shape to perform the basic functions of my job, or any job, and how the heck would I drive myself there?

Unfortunately, my PCP would never return the calls from the clinicians on staff at UNUM, who were seeing all of these pieces of paper from all of these other doctors saying that I could still work.

That guy I went to for a second opinion, Ortho #3? He literally just agreed with the assessment of the other guy, Ortho #2, and didn’t even bother to look at my MRI scans. He said as much in his notes. I read it myself.

Some of the doctors and specialists I’d seen said that I had 2 bulging discs. Others? That I had four, two severely bulging… no one could agree on whether there was spinal compression, either.

All I knew for certain was that everyone seemed to be blowing me off and the pain was so bad I didn’t want to live at times.

Yesterday I received a 7 page document listing all of the reasons why UNUM was denying my long-term disability claim, all the reasons why I would not receive benefits that I know I deserve for September, October, November, and December.

January 1 is the current plan for when the job hunting and the working begins. Though I’ll have to look for something remote or work-from-home still, probably.

In 7 pages they said things like, “The imaging doesn’t justify reported pain,” and, “Dr. So-and-so indicated that you had weakness while Dr. Whats-his-face said you do not have weakness only three days earlier/later.”

7 pages that felt to me like I was being called a liar.

A faker.

A cheat.

know that I am not any of those things.

It is demoralizing and dehumanizing to be trapped in this “back pain industry,” and to have page upon page of someone telling you that you’re not supposed to be in this much pain.

Therefore, you must not be.

Luckily I have a friend who is also a lawyer and is going to try to help me out in appealing the decision.

Most people in my position don’t have the financial resources to access a lawyer, or the wherewithal to know that it might be worth fighting a decision like this.

I don’t have the financial resources to hire an attorney. Especially not after more than 5 months out of work.

Ya know what?

That’s what these insurance scumbags count on.

Ultimately, whether they give me the money I know they owe me or not, that has no bearing on my physical rehabilitation.

Never let anyone else write your story.

Don’t let them decide who you are and what your truth is.

They aren’t the ones who have to look you in the eye every morning when you look in the mirror.

I lost the battle.

Now I’m pissed.

I’m not going to stop fighting the war. I can’t. Quitting isn’t an option. I would never forgive myself.

Look, I know I’m not a liar, a faker, or a cheat.

Know what I am? Royally pissed off and ready for a fight…

I guarantee you, they don’t know me.

 

 

 

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2 Comments »

  1. I personally am tired of ‘fighting the war’. For a start It’s not a metaphor I particularly like, because in the end the ‘enemy’ always wins anyway. It’s a war one cannot win. I prefer the concept of ‘The Will to Live’. I believe this concept will always be heavily influenced by loved ones, friends etc, whose wishes in most cases outweigh the sufferer’s. By which it is usually transformed into ‘The Will to Live for Others’.
    As someone who has borne chronic ill health all his life and who is now having to cope with progressive bone pain due to osteoporosis, I personally would throw in the towel if it was left up to me. I have had enough of it. I don’t need to be given a pep talk on ‘how good life can be’, because I just don’t see it. I don’t want or need to be here. Which is where ‘The Will to Live for Others’ comes in. Constant pain is such a diabolical and devilish contraption that it actually serves to entrap the sufferer in a kind of self-sacrificial torture chamber. In seeking to avoid inflicting the pain of his/her suicide upon loved ones and friends, the sufferer places him/herself inside this chamber for the rest of his/her natural; for as most patient’s know only too well, doctors are useless at pain relief, and chronic disease is most persistent.

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    • Hi Paul,

      First I would like to apologize for taking so long to get back with you. I hope you’ll understand that in addition to getting ill the week following Christmas, i also went through a couple of weeks of a pretty deep depressive cycle.

      I’m sorry that you feel you’re in a war you can’t win. I get it, I understand why you feel that way, but I’m sorry that it’s like that for you. I’m not there yet, I might be, but for now I still feel like I’m in a war I can win.

      We are going on 8 months now of not knowing exactly what the hell is happeningwith my body. But I kept fighting and finally got to a doctor that believes he knows at least part of it, and promised not to leave my side until we figure out the rest. That’s huge. Having a doctor that has your back (no pun intended) in a situation like this is key, and it took me a lot of feather ruffling, insistence, and being annoying AF to my PCP and his staff before I got here.

      I’ve dealt with a lot of trauma and shitty circumstances, health wise and with life circumstances. I live with PTSD. I’ve gotten to where I have a pretty great grip on that. But in addition to the chronic pain, I’m dealing with PTSD, depression/anxiety. You know as well as anyone that these things are exacerbated by pain.

      I’ve had many days/nights when I considered suicide, I try to be open about that. At this point, though, while I know it would destroy my family and I want to spare them that pain, I also want to keep living and fighting. Again that may change some day. But I still have dreams and things I want to do, a person I want to be, that I put on hold for MANY yearsbecause I felt lik eI wasn’t allowed to dream or do the things I dreamt of doing because of my enormous student loan debt. I had JUST started to get myself back, get my creativity back, and reconnect with the writer in me when all of this shit started. I’m not ready to give it up again because of this.

      I don’t know what all you are dealing with, but I’m sorry it’s taking away your will to live for yourself and not just others. I wish I had some way of supporting you to make it suck less. If there ever is a way, please let me know.

      Like

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