My Pain Anniversary

My Pain Anniversary

Anniversaries are always such happy times…okay, so not always.

This is one of those. 10 years ago today October 19, 2009. It was my last night in Los Angeles. I had done the 30 year reunion thing, spent time with my kid, saw friends I had not seen in years. All in all it was a good weekend.

I remember I even had plans the next morning for breakfast. It must have been 3:00 in the morning. I was downstairs in the family room at my mother-in-laws house. The house was dark and I had already learned that one doesn’t turn on lights at night even for a second.

I remember the stairs were polished wood. I had a glass of water in my hand, but it was pitch dark below me. I stepped forward and slipped.

There were only 8 stairs. Those 8 stairs changed everything.

To this day, I have no idea how the glass didn’t break. That glass of water I absolutely had to have.
I remember laying at the bottom of the stairs on the cold hard floor. I remember that I didn’t know if I was okay or not.

Nothing was broken, but I was far from okay.

Denise Hedley

I had been through some degree of pain for awhile following a car accident in 2001. It was little more than an annoyance. I yearn for those days.

The official laundry list of injuries from that fall:

2 pulled hamstrings, Two sprained knees, on strained calf, two sprained hips. One sprained wrist, one contusion, one sprained back.

I flew home the next day. When my mother-in-law heard what happened, she called and made arrangements for me to fly home as handicapped. Little did I know that I would never fly any other way again.

After I got home, I went to my primary care. He shook his head and we talked about things such as hot packs and ice and Flexeril and Percocet. I figured I would be okay in a day or two.

Four weeks later, I figured my Lupus must be acting up. I had been diagnosed in 1986. I did the obvious thing and got an appointment with a rheumatologist.

By the time my appointment came around, it had been 8 weeks since my fall. I had convinced myself it must be the Lupus out of remission. I was in far too much pain.

I will never forget that appointment. The questions she asked about past trauma – looking very much beyond my simple fall 8 weeks before. She was very kind and incredibly thorough.

I remember her leaving the room and then coming back to talk to me.

“Denise – I firmly believe that your Lupus is in total remission.” She took a deep breath before continuing. “However, your fall down the stairs was what is known as a trigger event, and you have the worst case of fibromyalgia I have ever seen.”

I think the world held still for a moment.

We discussed treatment and basically the description was that I would be in constant pain for the rest of my life.

At first I refused anything more than half a Percocet with the flexeral at night and Cymbalta during the day. I was optimistic. I knew of two friends with fibro and they didn’t talk much about it, which I now understand completely. But when I thought about them, I thought about how they had been becoming crippled before my eyes.

I remember promising myself that I would never be that patient.

We got my meds regulated over the next few appointments, and I stayed at that combination and that dosage for the next 9 years.

As you have probably guessed, I never have experienced true relief. Since I triggered, a lot of things have gotten worse. My arthritis had only been diagnosed 4 years before.

I did have to give in and have my 8th knee surgery. I apparently tore meniscus in my “good” knee during the fall. I got sick – it was harder to deal with the post-operative pain. Things got psychologically abusive at home. I began to experience flashbacks from not only my fall, but from two physical assaults many years before. My pain grew.

But at the same time, I was one of the lucky ones. I had a diagnosis and knowledge is power. I was honestly grateful.

The first time I ever heard the word “disability” was three years after the fall. It was almost an intervention. I was being ordered on to SSDI. I tried to defend myself but other doctors agreed.

I was transferred to a different rheumatologist one who teamed with a pain management doctor and literally had a nurse in his office whose only job was to follow up on SSDI applications and make sure that they were pushed through. I argued that I wasn’t ready.

I might have known that I was.

Before the SSDI decision came through I had a freak injury. Both tendons torn from the bone in my right elbow. I of course hid it for a week. I was caught when I went to turn a simple door knob and collapsed to the floor in tears.

Since then, my life has been about pain. I never wanted it to be. I’ve tried like hell to function and I did for awhile. Not any more.

I tried to hide under a pile of blankets for a few years. That one worked for awhile.

Now, here I am on the 10th anniversary of my life changing forever. My pain anniversary.

In many ways I don’t function very well, but I’m not hiding under a blanket. I get up and do what I have to in order to survive.

I write.

But here’s the difference. I write from my iPad that has a keyboard case to it. I have approximately 7 pillows and a heating pad on my back. My feet are propped up on pillows – currently elevated from the cellulitis. I write for Textbroker to make ends meet. I have enough Direct clients to make a difference, with the promise of some good work coming very soon…I firmly believe unless they discover I’m disabled. That might throw the chance at some real money out the window.

I don’t dwell on it, but I can’t help but think about it. That day – before the night I fell – I walked on the beach. I must have walked a good 3 miles. I felt good.

I have never been able to walk that far again.

10 years ago, I discovered the true meaning of the word pain. For 10 years now, pain has been my constant companion.

Anniversaries don’t seem so happy any more, do they?

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Authored by: Denise Hedley

Denise Hedley was first diagnosed with fibromyalgia in 2009. Her condition has worsened, and was diagnosed with bilateral RSD in January, 2019. She also suffers from Osteoarthritis, 2 herniated discs, and Systemic Lupus Erythematosis.

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Denise Hedley

And I’ve been doing it without meds for the most part since September 2017 which makes it even worse in many ways. I was far more functional medicated. I freely admit that. I think about how much more productive I could be if they hadn’t have taken them from me. But – with what is going on, we all know that won’t be happening again any time soon. I’m still hoping to get back into pain management, but even with that – I don’t know what to expect these days. That ER doc last week – that was a blessing. That was not the usual treatment in an ER – as we all know.

Paula

My story is similar. Thank you for sharing Denise!

Skeeter

Ok, and I thought I was kinda weird for remembering the anniversary date of my onset of CRPS/RSD. Well on Monday October 13th at approximately 7:30am 2003 while on vacation at a friends house in Fort Worth Texas I woke up with a terrible pain in my right shoulder..Well it’s now 16 years later, that pain was diagnosed as RSD. It has spread to my entire right shoulder arm and hand also my right foot, I guess you could say that I’m all “right” witch is a good thing because i’m left handed.
I am still fighting the fight with CRPS, I really don’t have much choice. That’s my anniversary story in short, at least I’m not the only one.

Know what MY FIRST thought was? WHAT AN IDIOT! Understand I’m a family physician who treated pain patients when NOBODY ELSE WOULD in my community before I HAD a pain problem THEN had my own “trigger events.” A virus in residency & working long hours for 3 yrs after initially caused muscle pain. Later TWO unfortunate stressful events 4 mos apart flipped me into full-blown fibromyalgia so severe I couldn’t walk across my house without pain. I couldn’t stand up to work more than 4 hrs/day after having worked 14 hrs every other day! BIG CHANGE in my life.

Did I AVOID pain meds? OF COURSE NOT! I was a PAIN MANAGEMENT PHYSICIAN! I knew exactly what I needed but I had to be careful or I might be “investigated.” Fentanyl patches (Duragesic) had just come out. I’d had excellent success using them w/patients BUT while it was LEGAL for me to prescribe them for myself in IN, I had a PERSONAL policy not to START a scheduled med for myself. Problem? I was the ONLY Dr around using it for chronic pain. I suffered for 2 yrs until I needed emergency surgery for a bowel obstruction. I went to a neighboring hospital for care as I knew those at my local hospital would treat me badly for being on the meds I was for my fibro. After surgery, the hospitalist at this hospital was also well versed in pain management AND he knew of me by reputation as an excellent pain Dr. He put a fentanyl patch on me. My life was on the road to normality again! I knew how to adjust it to the dosage that worked well for me after my surgical recovery. Within 2 mos, I began working 7hr days. In 6 mos, I was working 30 hrs/wk again. Later I saw a pain specialist who said I wasn’t on a high enough dose as I was taking more breakthru meds than I should. I shouldn’t think anymore about my pain meds than my BP meds so I learned more from her. She put me on 150 mcgms every 48 hrs along w/occas Percocet instead of Lortab. I NOW FELT NORMAL!

WHY wouldn’t you want to feel normal IF pain meds would allow it?

Rosalind Rivera

I feel very badly for you and having had chronic and intractable pain for some 30+ years, I truly understand what you are going through. I too have Lupus, Rheumatoid Arthritis, Spinal Stenosis for which I had failed surgery and a slew of other painful and severely debilitating conditions. Of course, as I’ve aged, all of these have become much much worse. It’s bad enough when one is in this state but then to have the medical community turn against you and to have absolutely no support whatsoever from anyone, especially your family members, makes everything that much worse, painful, isolating and psychologically detrimental. If your experience graduates as mine have then brace yourself, for the ride is only downhill from here. What makes it worse is the lack of support and outright vicious negating our pain and the failure of our doctors to address these issues because the powers that be, the CDC, HHS etc… day so!

Erin Cole

❤️

Gail Honadle

Your story sounds so much like my Niece’s a few differences as her Lupus is not in remission. Has Lyme’s, FMS, lungs, liver and kidney’s are trashed. Jacksonian Seizures. She’s torn the meniscus 3 times, no more surgery is possible. Plus she has to cope with the Concussions from falls. She has a 14 yr old who has Duchenne MD in the early onset stage.

Blaming Prescription Pain Pills For The Opioid Epidemic Is Fake News

https://thefederalist.com/2019/03/26/blaming-prescription-pain-pills-opioid-epidemic-fake-news/?fbclid=IwAR0hwvoIW9wRvt0lAcKXYF-y_onKfFuRfIvh92VYsrEfFZOefPQx3i_2QiU#.XamnDrO3vPC.facebook

Claudia

Denise… Iam so very sorry to hear… I have heard of Fibromyalgia. But now 7 months prior I understand it my heart goes out to you ..As well I am have CHRONIC pain and it SUX… 1st thing I do is turn on a lite Evan at 4 am .. I fell way to many times . I so understand ..its hard to sleep and waking is worse screaming worse I am glad you are doing so type of work or anything that I like .. I fight to make it out the 🚪.. It’s hard I scream . I remember when I got hurt at work I waited 10 days not my choice they called the ambulance .. Bruised back back at work in a lite duty before any surgeries
.yeah I don’t dwell anymore
.i so feel your pain on a not so happy anniversary .. I do hope they doctor s scientists come up with something new Gd bless u Denise I hope things get better . I truly mean that your story really touched me

Georgette singbiel

I’m going on two years of severe chronic pain. I need a hip replacement but hesitate because that may give me even more pain. Chronic Pain Syndrome. Opiods don’t really help, but what else is there? Today I had about two pain-free hours. I spend a lot of time in bed. Not exactly what I envisioned my retirement to be. Thanks for sharing. It all does suck.