Afraid to be Rescued

Afraid to be Rescued

by Angelika Byczkowski

One afternoon in summer while riding my bicycle along a fire road in our local forest, I crashed hard. I dislocated my shoulder, broke my collarbone and three ribs, and was knocked out for at least a few minutes. Luckily, my husband was with me.

Angelika Byczkowski

My first instinct after regaining consciousness was to quietly sneak back home so I could rest, take stock of what bodily damages I’d sustained, and lick my wounds in private. This is a natural instinct of most inured mammals. At the time, I believed I’d only dislocated my shoulder, and I didn’t find out I’d broken bones until days later.

With my husband spotting me, I had to ride my bike over a mile back to the Park Headquarters. There I found a couch in a dark corner and laid down while he rode his bike a few more miles to where we’d parked the car. People were going in and out of the building, but I made sure to look like I was just resting and hoped no one would notice anything amiss.

Any “normal” person would have called 911 and have an ambulance take them to the nearest emergency room, but I was desperate to avoid whatever reckless medical interventions I would have been subjected to. A lifetime of invisible chronic pain from a genetic connective tissue disorder (Ehlers-Danlos Syndrome) has made me fear and mistrust our increasingly standardized medical system.

Over decades, I’ve explored many avenues of pain treatment, alternative, allopathic, and cognitive, and found none effective except opioids. Now I hardly ever see doctors except for my PCP who knows my whole history and prescribes my regimen of medications for pain: antidepressants, antiepileptics, and opioids.

Without knowing anything of my history, I worried emergency room staff would interpret my current pain medication regimen as evidence of addiction, or jump to the conclusion that I had crashed because I was “high” on pain pills. They could easily put some comment about their belief that I was an addict or that I was having “problems” with medication into my medical record and, in this way, make sure no doctor would ever prescribe opioids for me again.

I feared that in an emergency setting, doctors might insist on “putting my shoulder back into place” with some abrupt physical maneuver that would make it worse or even break some other body part. I didn’t trust them to understand how a connective tissue disorder could impact my injuries or their treatments, and I doubted they would believe how sensitive and fragile my non-standard body is. They could assume any resistance to their “standard treatment” was just a lack of cooperation, and this would prejudice them against me.

I was almost certain that unfamiliar doctors wouldn’t be able to believe how much pain I was always in and would assume my strong reaction to being handled without great care was an act. As in so many other emergency rooms these days, they would assume I was a drug-seeking addict and send me home, so why bother?

Instead, I waited three days until my trusted prescribing doctor would be back in the office and then went to the Urgent Care Clinic at the medical group where she works. I had just recently read that concussions cannot be treated with anything other than rest anyway and I had no headache that would indicate a hemorrhage, so I spent the weekend home on the couch, mostly asleep, getting up only for necessary bodily functions. My husband tended to all my needs and kept an eye on me every moment, even sleeping on the floor next to the downstairs couch each night.

Over the weekend it became more clear to me that I was severely injured and needed medical attention, but I was still afraid to go to an emergency room. Getting help would mean letting someone physically handle me in a busy ER when I was in too much pain and too disoriented to defend myself against the best intentions of medical staff.

They would have been trained to check a certain list of symptoms, match them to a certain malady, and then treat that malady according to standard protocols. But standard protocols are devised and established for the “average” patient (the one with one testicle and one breast), not real patients like me and you.

I’ve become wary of our increasingly standardized medical system. My body and its workings are so far from average that standard treatments are rarely effective and can even be damaging.

I’m hyper-vigilant not to do anything that might increase my pain levels or put my access to opioids in jeopardy because doctors are now being told that pain no longer requires “real medical treatment”, only unproven “alternative therapies”.

Especially in my broken and vulnerable state, I was afraid to be “rescued” by America’s ideology-oriented and profit-driven medical system.

Until she was disabled by progressive pain and fatigue from Ehlers-Danlos Syndrome and Fibromyalgia, Angelika was a high tech IT maven at Apple and Yahoo, and a competitive endurance athlete. She lives in a rustic cabin in the redwood forests of the Santa Cruz Mountains just up the hill from Silicon Valley with her husband and various 4-legged kids.

When her pain allows, she spends her limited energy researching, writing, and blogging about Chronic Pain, EDS, and Fibromyalgia at http://EDSinfo.wordpress.com and writes poetry to sustain her sanity.

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Authored by: Angelika Byczkowski

There are 29 comments for this article
  1. Maureen at 9:53 am

    Sheryl, I’m keeping you in my prayers. I’m so sorry for all that you are going through. Life can so very tough. Keep as strong as possible. Sending a hug.
    Maureen

  2. Sheryl M Donnell at 6:37 pm

    I could write your story. My last visit to the emergency room was a column just like this. Since then I fell again and broke my arm, but I would not return to the emergency room where I was so mistreated. I waited for an urgent care clinic that specializes in bones and faked a lower pain level to be seen, never asking for any more pain meds. And my once trusted pain doctors? Three phone calls and no returns. I know I am in high risk for a spread of my CRPS, but they don’t seem to want to help anymore. When I broke my CRPS foot in Sept. I got no additional meds even though my pain was and is still insane. Now with my broken arm, I must find new doctors and I am terrified. God bless you and your doctors.

  3. Steve at 8:08 am

    Sorry I missed spelled subtex buprenorphine suboxone are used to get off opioids .they are all opioids . With out the high and side effects . They are not FDA approved for pain but doctor use it for long term pain .

  4. Leah at 11:53 pm

    Angelika, your issues sound similar to mine. No long term pain mess for chronic pain. CDC guidelines have docs scared to prescribe even muscle relaxants. Biking accident. I was hit by a driver and ended up with with severe broken bones and lower lumbar herniated discs.

  5. Maureen at 8:04 pm

    @Judy (and Steve). I also googled it and found no medicine under those names.
    But if it has to do with Suboxone…it’s surely not a med to be on for life, that’s for sure.

  6. Zyp Czyk at 5:58 pm

    @Sheri – I must point that this had nothing to do with Obama. The original impetus came from a group calling themselves PROP (Physicians for Responsible Opioid Prescribing). These are mostly doctors that do “Interventional Pain Management”, like surgery and epidurals that aren’t particularly effective, but are highly profitable. Without the option of using opioids, these guys will have many, many more desperate customers.

    The PROP group has been advocating for opioid prohibition and submitting their anti-opioid rhetoric to the government for many years. They and their director, Andrew Kolodny, gathered other anti-opioid advocates and created a group to ostensibly “research” opioids. They wrote the CDC guidelines themselves (you can find verbatim quotes from other PROP material), and then quietly and quickly pushed them through the government’s guideline-creation process.

    (see also https://edsinfo.wordpress.com/2015/09/21/opioid-war-intrigue-a-crime-drama/ and
    https://edsinfo.wordpress.com/2015/11/09/prop-founder-calls-opioids-heroin-pills/)

    PROP has been the origin of many efforts to restrict opioids. I feel like they’re trying to take us back to the dark ages, when painfully crippled poor people were left to rot in the streets.

  7. Kathy at 2:36 pm

    I wish you had finished your story. How did you get the medical care you needed? Did you just stay home and suffer?

  8. L at 11:05 am

    I don’t see doctors anymore. My ENT did four surgeries on me since 2005. Back then I got the narcotics I needed because it was oral surgery for squamous cell carcinoma. Since that time they have made me feel like a drug addict and even said so. Although they kept telling me I needed more and more surgery like every three years. Then lied. I went to see another doctor and he told me no, I did not have a hemigloyssectomy, as my first doctor noted. She obviously did that to get the money from the insurance company. After my last surgery she did not see me before or after surgery and performed surgery I knew nothing about and it was unnecessary. Excruciating pain! This was at Emory! Any flareups and it was like: “we have to remove that surgically right away”. No! And not give me enough meds to keep me from pain because trust me when you have your tongue operated on it is the most painful area on your body other than one other I can think of that I won’t mention. Doctors are either crooks taking kickbacks from pharmaceutical companies or lie to you. They shoot in the dark. They don’t know what they’re doing. Emory, I was there lab rat and then I was called a drug addict. I hated taking those drugs and I did not after I could take the pain. After I complained to patient advocacy and Emory they threw it out. The AMA did nothing. How often is it that you have surgery and the doctor does not see you before or after? Then you’re supposed to have a two week follow up and they let you see their nurse. I had to beg for a doctor and saw a nurse instead. Can you say insurance fraud?
    I’m never seeing another doctor again.

  9. Judy at 7:23 am

    @Steve….what is subsone and subtext??? Tried googling it & got nothing.

  10. L at 2:33 am

    Under Trump there will be no more medical research and he’s looking at ways to get rid of disability income. You think we have it bad now? Think again. He wants to be rid of the old, the poor, the sick and the hungry. He’s already stated no more meals on wheels. Talk about suffering. Doctors are quitting left and right and they certainly won’t give out any painkillers. If you’ve had a catastrophic event like I have you’ll be out on the street looking for heroin because you won’t have any money and then you’ll just be out on the street or just let yourself go.

  11. Amanda Albany at 11:55 pm

    So happy to know that there are people out there like me who recognize the need of pain patients who are becoming desperate for real help. I’m truly thankful to know I’m not alone when I say we need better care. No one should have to suffer for so long…

  12. Jean Price at 11:42 pm

    Your article speaks volumes about the current state of heath care and the state of many patient/physician relationships!! And as one of our presidents once said in his State of the Union message…”The State of the Union is NOT good!” The union of medical science, technology, physician priorities, and patients needs is really not good either! It’s not working very well…and especially for those like yourself, Angeika… and many of us who have complicated care issues!! Sad, but true!

    This makes me think of the loss of good patient-centered care which has happened over time! Starting from the very beginning….when hospitals were once for sick patients to go to die. Then next they developed into helpful places for patients to actually expect the type of care needed to recover…and to live, due to better understanding and better treatments for many previously fatal or debilitating injuries and illnesses. Soon they were being dedicated to the various physician specialties in medicine and advanced technology, both of which quickly appeared after World War II…and it was a time when doctors ruled the day, as far as hospital administrators and nurses….and even patients were concerned. Next, not so long ago, hospitals turned into large health centers where real individualized patient care fell to substandard, lost in the dictates of the administrations pushing their acquired costly advanced technologies—and physicians relying less on the art of practicing medicine. To finally what we see now…health care facilities mostly governed by large insurance companies…with a huge dash of government bureaucracy overlaying all care! Where patients are now often at risk!! Especially if they don’t fit a certain protocol!

    So, we, the people, often are lost in all the red tape and medical errors and judgment errors…with the nursing staff and physicians much more schooled and concentrated on following the dictates of administrators, insurance companies, and an armload of government regulations! And not centered on individualized care, especially for pain!! (Even before the CDC became so involved…which is still difficult for me to understand about the WHY!). In effect, we do take our lives in our hands when we walk into a hospital! And without the help of a caring, questioning advocate, it’s even more scary! The art of listening to the patient and being partners in our own care has shifted! And we are the ones who seem to lose the most! Sad!,

  13. Sheri at 8:33 pm

    I hope we can get all our stories to whoever is doing these surveys, or someone that can do something about this mess. I feel the same way about going to the hospital. I have DDD with multiple bulged/herniated discs throughout my whole spine. Also, I’ve been diagnosed with cervical dystonia, muscle spasticity (upper left side between ribs), myofascial pain syndrome, and facet joint anthropathy. I also had a spontaneous collapsed lung a couple years ago. So…with the muscle spasticity and myofascial pain, it cause so much pain in my chest and back, that sometimes I think my lung collapsed again. With the myofascial pain, I can literally feel my heart, left lung, and those ribcage muscles. So often I’m not sure if I’m having a heart attack or collapsed lung…BUT, I DO NOT want to go to the hospital because I know how I am treated. I am lucky to be able to call my primary doctor, and he will tell me to come right in for an x-ray. I have been seeing a Neurologist for 17 years. I am on disability, I have never abused my meds, and since Obama started this BS, I no longer have quality of life. My Mom has dementia and I used to be able to help care for her, but with the cut-back of medication…I just can’t do it. I try. So that adds more stress and more pain. So I have came to the conclusion that if my lung does collapse or I am having a heart attack…so be it.

  14. Patti Okon at 7:34 pm

    I’m so sorry to hear your story! I, like you suffer from EDS, Fibro and RA. I’m so fortunate to have an awesome PCP, who totally supports me. I fear “The System” will force her to cut off my much need med regime. I’m have been as stable as can be for 10 years on the same meds. I don’t ask for anything other than occasional antibiotics for infections. I’ve had 4 surgeries on my neck C2-T2. I now need additional surgery for herniated disc below my current fusion. I’m declining. Each time, within a yr or two, I break down below the prior fusion, because of added pressure.

  15. Steve at 6:44 pm

    Never abused opioids ,never felt normal while I was on them .used all the pain mgt options shots pills nothing worked long term .Opioids ruined many years of my life .then I call around for help it was all about money , I didn’t need counseling or spend thousands on rehab .Found a doctor on the subsone site who excepted my ppo the Medicare insurance it cost me $35 per visit and get generic subtext 8mg 30 pills per month for $ 53 with Good RX coupon
    Takes all my pain away . These drugs should be used for long term pain not opioids .

  16. Zyp Czyk at 11:50 am

    Thank you so much for your comments and praise – it feels so very good to have accomplished something that others appreciate.

    Here’s the “rest of the story”:

    When I finally went to Urgent Care the following Monday, I don’t recall spending any time waiting. They must have taken one look at my grossly disfigured shoulder and whisked me right in. I was still only 3 days post-concussion, so I don’t remember things clearly. They took X-rays right away and then came back with the verdict: broken ribs and surgery needed for my collarbone.

    I told them I was a chronic pain patient and that my usual pain was so bad, the accident only made things slightly worse. They all behaved as if it was perfectly normal for someone to be taking “chronic opioids” for a chronically painful disorder, like EDS. No one said anything about it, so that was a relief for me.

    On the other hand, they said they’d call in more Vicodin to my pharmacy, but I never saw it. I’d just recently refilled my monthly opioids, so I wasn’t surprised when the Rx didn’t make it through. Thank goodness I didn’t need it – the pain wasn’t nearly as bad as I’d expected and I made it through using some of the breakthrough meds I’d saved up for just such an emergency.

    I never saw any written record of the prescription so I decided to keep my mouth shut about it and manage with what I had. Better that than draw any more attention to my medication.

  17. Deborah Babcock at 11:26 am

    This is exactly why I don’t go to the Dr for things that I should be seen for and it’s a real and terrible thing that happens to us at the hands of the drs and medical staff..

  18. david hatten at 9:11 pm

    I know how you feel, I have to go to a pain mgt. the center just to get my meds for back and neck damaged in a car wreck 6 months ago. I used to get the same opiate from my general Dr. [oxycodone] a 150-mile round trip, which is an agonizing ride, is there anything we do about this crazy made up opiate crisis? am I going to have to go to getting heroin or something off the street to just get through the day?we need a way to fight back

  19. Chris at 7:58 pm

    I am so sorry to read this, but I was nodding along as I read- I have a different invisible illness- Complex Regional Pain Syndrome. I’ve had it for 27 years, since I was a teenager, and I’m the same way. I will not go to a new doctor. In fact, I currently don’t even have a PCP because since moving to northern California finding one has been…challenging. They all want me to go through “pain management” I’ve been there, done that. At this point all I care about is having something so I occasionally sleep. I’ve given up on ever not being in extreme pain. I just need enough sleep to function. For the first few years after moving back to No. Cal I flew back to AZ to see my prior doctor.

  20. Lexie at 11:51 am

    I understand completely! I used to be a nurse and worked in a variety of critical areas and today, I am terrified to go to a hospital!! When I have to have surgery I take detailed posters to put on the outside of my door, over the head of my bed and to take in to surgery with me. It gets a lot of teaching done, about EDS, but it sure doesn’t always keep me safe.

  21. Annette Merkley at 8:28 am

    It’s incredibly horrible that our country’s medical system has come to this! Any American with a diagnosis such as yours should have total access to the meds needed to survive and function without fear of being labeled an addict and having those meds taken away. Thank God for your husband…others are not so lucky! What is it going to take to make these government idiots realize that they are causing a precious and vulnerable section of American citizens to be treated less humanely than animals!?!

  22. Eve Rios at 8:18 am

    I’m so sorry and feel the same about any doctors. Thank you for writing what I feel. Love and hugs

  23. Judy at 7:45 am

    Wow Angelika, I can only imagine how much pain that bike accident caused you in addition to your usual pain & fatigue. I hope you’re healing from your accident. Like you, I don’t trust most of our modern medicine doctors who fail to look at us as individuals with symptoms that don’t fit neatly into their box of standard maladies. My doctor told me 25 years ago to “learn to live with the pain”…..no pain meds at all. Besides chronic pain, I also have chronic fatigue, and just don’t have the ENERGY it takes to find a new doctor, who probably wouldn’t be any better.. So, I live with the pain….the only way I’ll ever be pain free is when I’m dead. I’m ready!!!

  24. Cheree at 7:26 am

    This is one of most appalling stories I have read! THIS is what the United States medicine is now?? THIS is how we have to protect and advocate for ourselves??? THIS is medical care??? THIS is insane!!!

    Angelika Byczkowski, I do hope you are doing better now—through NO help from the so-called medical field. My heart goes out to you……….to all of us………..

  25. David at 7:19 am

    Thank you for your sincere and personal article. I have chronic systemic pain from many herniated discs due to someone on illegal drugs hitting me in a car accident. I unfortunately I have drug resistance due to multiple ABCB1 genes so of course I have extremely unusual reactions to most all medications except Opioids that I need just to survive. I can really relate to your views on “standardized” medical care that does not understand statistical outliers such as you and I so… we are easily invalidated and considered a problem. Thanks for fighting for our rights to medical care and I wish you peace and health.

  26. Maureen at 6:48 am

    Angelika, I’m soooo sorry that you endured those injuries in the midst of a wonderful bike ride in the woods! Your words surely wrap it up in a nutshell!!
    I’m curious to know the end of your story…what did you have to endure from then on?? How were you treated afterall?
    I pray that you are well healed by now.
    Hang in there and keep strong. You are a fine warrior for sure! Maureen

  27. Leah at 3:41 am

    I had a retired policeman hit me while I was bicycling three years ago. No one would give me long-term pain medication. I was almost killed. I have a separated shoulder and lower lumbar herniated disc that hurts the most. I had numerous issues when I was hit. Left parietal lobe concussion, fractured pelvis, fractured symphysis pubis, and the list goes on and on. I went to numerous physicians. None of them understand the scope of pain. I gave up trying to get anything for my pain from physicians. In fact I’ve given up on physicians altogether. I’m treating myself with Kratom. Physicians don’t make any money and you are just a number.

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