An Open Letter To My Body:

An Open Letter To My Body:

By Katelyn O’Leary

Katelyn OLeary dress

Katelyn O’Leary

Hey there, it’s me, the part of you that isn’t on the same page.

I don’t know what I did to deserve you: equal parts lovely and equal parts rage.

You challenge me often and you make me question my choices.

Should I have stayed back home? Can I really achieve my goals? Does anyone really love me?

On the surface, I look like anyone else, except 5-9 inches taller. My height has always drawn attention – typically unwanted.

“Yes I know I’m very tall. I appreciate you telling me this, especially while drunk.”

And yet it would seem that I was destined for another genetic lottery – a condition with no cure – no end in sight – just hope and endless bouts of hospital treatments.

My leg burns with the fury of a dying star. My leg is equal parts abuser and abused. Don’t upset my leg, it might overreact. I’m sorry I can’t go out because of my leg.

Why can’t I fix you? What did I do wrong?

How can I move forward with a leg that seems to move backward?

I ache for the days when I could run and deal with my stress. These days I need a week to decompress from a weekend of high energy, heels, and a dress.

I wish I could keep up with those around me, I wish for many impossible things.

But for now I will wish for understanding, because I don’t know when I will change.

Katelyn O’Leary suffers from CRPS. She lives in Los Angeles, works in the entertainment industry. She is a frequent contributor to the National Pain Report.

About CRPS: Complex regional pain syndrome (CRPS) is a chronic pain condition most often affecting one of the limbs (arms, legs, hands, or feet), usually after an injury or trauma to that limb.  CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.

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Authored by: Katelyn O’Leary

There are 9 comments for this article
  1. Janet at 1:08 pm

    Hi Annie- I wondered where in FL you are- just area? I am in Brevard County & just walked out of my first consult with the new FL Pain Institute which bought out my great retiring PM Dr., and he wants to do the new high resolution spine stimulator for my venous leg pain shown to worsen with age…he actually practices near Tampa. Just curious if same dr. I’ve been chronic pain for 23 yrs since iliofemoral to ankle DVT’s ruined my deep venous system. I heard a CDC rep ALSO say: people have had chronic pain without opioids in the past. So terribly showing lack of empathy AND understanding. Sure, and patients w/chronic pain back in the day drank, or killed themselves. Thumbs up for your reasoning CDC!!! We also didn’t have these nerve burnings, nerve blockings, SCS’s invaded into bodies back in the day. Can this be due to the 2 persons on head of committee being in program which rehabilitates drug addicts? Or the fact that these invasive procedures are extremely costly- and no guarantee? No. They (MD’s) are NOT thinking about helping their patients. Since private insurance became so arrogant about increasing premiums, covering less, and drinkin with boys in DC, what’s BEST has been lost for the patients of ALL kinds. Dr’s were used to McMansion livin, well, when I graduated from nursing school in ’78, they didn’t live this lifestyle. They enjoyed medicine as art, enjoyed respect, and had control over how they would treat their patients- many medical organizations now treat them as mere employees, with rules and limitations they must sign on to if they want to work in a “practice”. And who can afford to work alone after med school? It is CORRUPT. And we, as in “les miserable'” have gone extremely backwards. I think we all know whom is responsible for this ayn rand attitude. Perhaps ask your primary, if you like them, whom they would send a family member to for pain management. Best wishes.

  2. Chris at 10:36 am

    Thank you for speaking out.
    I have many of the symptoms, and take many of the same meds.
    But, I just want to say Thank you so very much.

  3. Annie at 10:23 am

    Don’t give up Katelyn! You are not alone.

    My last visit to my Pain management doc was eye opening. The first words out of his mouth “We need to get you off of all these pain meds”.

    He proceeded to tell both me and my husband about the new and improved stimulators that of course he would get paid to implant in my body.

    This Florida doctor knows I already went through the trial stimulater process. it was implanted in my spine for 5 days and only aggravated my Arachnoiditis.

    Still he pushed and I walked out, leaving my poor husband to deal with this so called PM doctor.

    In the 28 yrs that I’ve been dealing with chronic pain I’ve never had to Doctor shop, but after moving from NJ to Florida Im actually thinking about it.

    Last year I had a lumbar spine fusion. I was able to wean myself off of major amounts of pain meds. Because I’m not an addict I get no credit for that.

    My new PM doc skimmed over 28 yrs worth of medical records that were sent to him by my Jersey PM doc. It pisses me off when Fl. Doc calls Jersey doc a quack. Really?

    It’s frustrating to have to explain that I’ve already tried a certain medication, all he has to do is look at my records that are right there in front of him on a computer screen.

    My body hurts!

    My neuropathy hurts!

    The pressure and spasms in my spine hurts!

    My RA hurts!

    When my body is in a flare from Fibromyalgia it hurts!

    My only hope is that Medical marijuana gets to Florida before We’re all bed ridden with pain, and before PM doctors start handing us all scripts for Aleve and send us on our way.

    What ever happened to “First do no harm”?

    I don’t understand how an addicts life is more important than a person who lives day in and day out with chronic pain.

    Do we all have to March, stumble and crawl on Washington in order to be heard?

  4. James Fugedy, MD at 4:47 am

    Transcranial direct current stimulation (tDCS) provides relief for treatment-resistant central pain syndromes which include CRPS, fibromyalgia and migraine. tDCS is easy to do, without adverse or side effects and can be self-administered with training and supervision. tDCS is also effective for treatment-resistant depression. Over 2,000 published papers in the last 15 years.

  5. Spicer at 9:48 pm

    I’m a veteran and was shocked to be seen by a pharmacist who called himself a doctor. Abused after six compliant years and humiliated by this jerk, he reduced my oxycontin from 180 mg a day to 90 mg in one month! Suffering I’m told opioids are no longer used for RSD and I’m being sent for ketamine infusions outside the V A. The cost for hospitalizaton, not to mention the debilitating exacerbation from this shocking non-care, does not matter to this man, asking me if I used meth, cocaine, marijuana. Anyone whod ask, aware of 6 yrs of passed urine drug screens, who’d treat a 55 y.o veteran, old enough to he his mother with such disrespect ought to be reported. I reported him to find out all providers are either saying nothing, or have the nerve to give me a speech on opioid and benzodiazipines, and the universal problem they are. The fact i have had sympathectomies 20 years ago, today i was asked, “exactly who was it who said you had RSD”, as if I was misdiagnosed! I was pain controlled for a good 5 hours a day and sleeping, that’s over and I’m becoming more depressed quickly. The V A cared about suicides last year. This year their care is replaced by “end opioid use.” My primary care ignores my messages and this pharmacist is not a pain doctor, but a rude man intent on humiliating veterans, and interrupting chronic RSD patients lives. The war on drugs is the war on very sick people, who have depression. Show me a happy sick person living in pain! The one klonopin I’ve taken for years to sleep at night when the burning I have will not let me sleep I have been told is lethal with opioids, and will be discontinued as you well. The records I have will say all but the truth, as compliant, there is no reason for this change. If ketamine does not help me, I’m looking at a life that hurts and scares me so much I cannot think ahead or I become anxious and petrified, which will only add more pain, to what this decrease has. They don’t care if you have a chronic illnesses now! The plan to end pain medicine, no.matter the effect on my life, is tunnel vision! The abuse will continue and more chronically ill will suffer

  6. Janet at 6:18 pm

    The change is already occurring. As the CDC representative said on TV, “chronic pain is not relieved by opioids, so “they” can use oh, physical therapy, or what hasn’t been invented yet.”
    My leg pain is from several severe groin to ankle blood clots, ruining my deep vein system. The Dr who tried to stent it, after stenting veins invented, said “I am sorry but it is (blood clot residue & scarring) like cement in there, I couldn’t push the stent through. I cannot fix this, get a good pain management specialist.”
    If one reads the CDC policies, they are directed to the “primary doctor”. NOWHERE is a board certified pain management specialist Dr. addressed, in the entire document.
    I feel I gave of my life as an RN, caring for others. Not a bad terrible person. I feel they are worrying more about the drug addict than those who truly suffer, daily, from intense pain. Imagine getting not enough oxygen to your leg muscles: this is me with my microcirculation so impaired it can no longer exchange toxins with oxygen. Wear a tourniquet around your thigh during your day. And now I am told the regime I am on, which has helped me so much be physically more active, will go down, down. To nothing I suppose.
    Shameful they refuse mental help for drug addicts, and decide to treat organic chronic pain patients the same. Drug addicts elevated over regular once working individuals with conditions they did not ask for. This is the truth: our govt cares more about keeping drug addicts alive, than those who truly suffer, every day. I am dreading my next visit, as I know they will decrease greatly what DID HELP MY CHRONIC PAIN, never elevating in dosage.
    Please know, I, and many good people, will die of suicide rather than live in this much pain.
    But, hey, those addicts will be alive. You know, the ones whose primary dr’s overmedicated.

  7. Layla Rose at 4:29 pm

    Wow this touches me so deeply. I am very moved by others’ pain. Perhaps it is a permanent condition of the suffering to be empathic and sensitive to other’s suffering as well.

  8. Amber at 12:44 pm

    Oh, how I understand you my dear. My child had had CRPS since she was 15. It’s been a grueling journey for her. She’s finally walking again, after a 4 week stay at Cleveland Clinic. I also have chronic pain (interstitial cystitis, fibromyalgia and pelvic floor dysfunction). Know that we all fight with and for you. Stay strong, beautiful girl.

  9. Hayden Hamby Jr. at 6:54 am

    I am not familiar with Katelyn’s disease, but I do know quite a few people either who have had surgery for an injury or sickness or have been diagnosed with a crippling painful diseae causing chronic pain. I personally have been dealing with chronic pain for 24 years and still working a good bit trying to provide the needs of my family without leaning on the pocketbooks of others in any capacity. I was a volunteer firefighter for 14 years without any compensation. I like people. I like people helping people. Like all of us with chronic pain I have analyzed…… what makes the pain worse? What makes the pain better? How can I manage the pain and live an any where near a “normal” life? Hard questions with few answers. I do know that I don’t like going to pain management every two months. I don’t like spending the money it costs to have a reasonable pain…..less life. I don’t mean painless, I mean a life with pain tolerable enough to keep going so to speak. Like all of us in very bad chronic pain, even suicide crosses your mind. May as well admit it, it is part of a life with chronic pain. Now what I do not agree with is the powers in control that regulate oral medicines are attempting to have Americans “cut back” on their medicines. WHY? Should this decision not be left up to a doctor who has been to school for the most of their young adult lives? Pain varies with the individual whether it is a a pain tolerance issue or an injury or sickness issue. I ask that before any wrong decisions are made about the control of scheduled medicines, please talk to the doctors disepensing these medications. They see the real people fighting pain daily! Bless You Katelyn, I DO know where you are in your fight with pain control. To the official regulators, those who regulate (dispensing and how much etc.) medicines that do help us in chronic pain and I understand it is about one third of America to one degree or another, please look at someone in your own family. I am sure someone is having a hard time with pain. I know that you would ease their pain if you could. Maybe you can if you are in th capacity to regulate the dispersment of pain easing medications. I ask that they please think what impact a new law can have on the ones in chronic pain. Yes there are other ways to help ease chronic pain and I use them all. Watertherapy, braces, proper rest, and any other way that I read about that can help me with my pain control. My name is Hayden. I have no education as I came from a family that could not send me to school and I did not have a mentor to advise me to make good grades in school, earn scholarships, and go to college. All I had was the knwoledge that to survive, I had to work. I have worked in construction most of my life. Yes, construction labor is needed in America too! @ back surgeries later and neuropathy developing in my legs, I have no regrets about working hard. I just ask those who make hard decisions in our peoles government please don’t make life any harder.