We are not seekers

Dear Doctors, Nurses, Nurse Practitioners, Physician Assistants, and other Medical Personnel:

We are not seekers… or druggies… or addicts – we are in pain.

You cannot hear us because your ears are deaf to our cries; your eyes blinded to our tear-stained faces. Your hands feel our cyst-filled ovaries, yet they glide so smoothly over the knots of turmoil that seethe in our stomachs and keep us up all night. Your laparscope camera view witness to the implants, bleeding, oozing, growing – our bodies playing hostess to a disease that is internally draining the life from us. It sees the webs and bands of adhesion’s formed and wrapped like cellophane and Christmas wrapping on our uterus, our ovaries, our fallopian tubes, our pelvic cavities, our intestines, our bladders – binding everything and pulling them into a tight band until everything is forcing to snap from the tension.

We ask for relief – you give us “the pill,” “the shot,” “the ring.” Whatever the mask it’s wearing it’s hormones you bring.  This plagues us with migraines, and moodiness, achy joints, weight gain, cravings. Slowly, we feel ourselves slipping; we are no longer ourselves. We’ve become bitchy blobs.  Some of us are still in great pain; bleeding and writhing in  monthly nauseating waves. It never ceases, even though we plead for it to as we cling to our bed sheets as we wait for the heating pad to heat up or the ibuprofen to work.

But when push comes to shove, and we just can’t take it any more, we slide back into your offices and beg for something to numb the hell. Just something, we ask, for those 2-7 days. Just something, we ask; just something for the pain. Yet, we keep getting turned away. Your ears remain deaf. Your eyes remain blind. Your fingers reach for your pads and write out that script for a lesser drug. You might say, “I would love to give you something stronger but I’m only an NP.” But we know this is a lie. If you wanted, you could get the doctor’s permission. You’ve done it before. You’ve…done…it…before…

So remember…Doctors…Nurses…Nurse Practitioners….Physician’s Assistants…and other Medical Personnel…

We are not seekers… or druggies… or addicts – we are in pain.

Doctors, you take an oath to do no harm – yet, when you send us away under-medicated and in pain you are doing harm. Please, stop under-medicating your chronically ill patients in fear that they are addicts. Instead, take the time and get to know your patients. By doing so you will know if they are addicts or truly in pain.

Chronic illness sucks – doesn’t matter what kind. If you’re in pain and not being properly treated, you’re life can be rough. But sometimes dealing with the doctors who treat you like an addict when all you’re trying to do is get someone to listen to your pain is down right frustrating. And that is so sad.

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12 responses to “We are not seekers

  1. Thank you, that is so true. I’ve met my fair share of doctors that looked upon me that same way. Its so frustrating when they eye you suspiciously and you know they’re thinking “oh she’s just making it up.” It took me 10+ years to finally find a doctor who believed me and has no problems giving me scripts for the good stuff. His wife has Endo too and so he KNOWS… I’m so sorry you have to put up with that… hang in there and I hope an pray you will one day (hopefully very soon) find a doctor that takes you seriously and gives you the attention you very well deserve! ((Hugs))

    • I wrote that post not just for me, but for every single one of us with a chronic illness who has to endure these doctors who refuse to listen and look and see our pain. May one, or two, or three of them see this post and pass it on and hopefully next time, they will listen. We are not asking for an hour of their time, just a few minutes. We don’t want their sympathy, just their respect.

  2. Never has a truer post been written. I suffer with horrid chronic pain, 24/7 and as I sit here and type, I could curl up and die with it. Chronic pain drains the ever loving life out of you. I need something different. Some days I wonder if I am unrealistic to expect to take a pain med that gets me 100% out of pain. I am awaiting a referral to a pain specialist 5 hrs away whose philosophy is: ” Pain control is a basic human right.” I agree, it is. When I was a nurse in training, we were taught that ‘pain is what the patient says it is.’ Not any more! I do take a lot of pain meds to begin with, but, most days it still doesn’t cut it. It is time for something different.

    It is so sad that those out there abusing narcotics are making it more difficult for those of us with chronic pain. Doctors are now scared to death that they may be prescribing a narcotic that will be abused or sold on the street for abuse. I would gladly take a urine or blood test to show I am taking exactly what I am scripted and need. The spectrum has swung way too far the other way and now the patients with chronic pain are suffering. I would love to be out of pain and never have to rely on pain meds, but the reality is, if I don’t have them, I don’t move out of bed! I have never gotten “high” off of any pain med I’ve taken. I’ve often said I wish I did-then at least I’d be enjoying myself. The fact is:those that take narcotics for chronic pain do not get high. It goes to the source of pain to obtain relief, there is no goal or wish to get high….JUST TO GET OUT OF PAIN!

  3. I’ve been fighting chronic pain most of my life. Undiagnosed, misdiagnosed and finally diagnosed with transformed daily migraine. Three years ago, I had surgery to remove what turned out to be endometrial ovarian cysts (two doctors suggested I had ovarian cancer before I found a great OB/GYN). He did his own ultrasound right in the examination room and told me the good news — not cancer. Then the bad news — I needed surgery. Sailed right through it and he sent me home with 20 vicodin. 20! Enough for 3 days at dosage instructions. Now, I don’t know about you, but my pain was not gone in 3 days. (Likely exacerbated by being kicked in the stomach by a 2-year-old having a temper tantrum.)

    I made the pain meds last 5 days. By that night I was literally writhing in pain from the surgery. Pain in any part of my body (real pain, not a stubbed toe-pain) triggers severe migraine with vomiting. My friend had to drive me to the local ER (where I was well known as a migraine patient). He helped me inside and up to the registration window. I was doubled over and panting, an ugly mess, and my friend tried to do my talking for me. (Tip #1: Always take an advocate with you to the ER if you can).

    Nice Nurse Candy (yes, her real name) was not on duty that night. Instead I got the nurse from hell. He yanked me out of my chair and told me to get in Room 3. His name tag said “Andy” but I shall refer to him as Nurse Dick. I was sobbing and hurting as I followed him down the hall. He pointed to the bed and told me to strip down, then threw the hospital gown at me. (Tip #2: NEVER let them see you cry. Advice given to me by my neuro doc who is also a migraineur.)

    I could hear my friend explaining my situation (surgery, migraine, vomiting) to Nurse Dick. Then I could hear Nurse Dick explaining to the doctor that I was an addict in withdrawal stage. He told my friend I needed to “just suck it up and get off the drugs.” My friend went ballistic. Yeah, he raised his voice. God forbid you raise your voice to a doctor. He was asked to leave the ER before they called security. (Let me add, my friend was not out of control nor threatening in any way.)

    So, now, there I am freezing cold and sweating at the same time from migraine. Doubled over in pain and panting. Trying not to cry because it just makes the migraine worse. Alone. My advocate is in the ER parking lot chain-smoking. Nurse Dick grabs my arm impatiently to take my BP. Very high. He starts in on me telling me that he’s not going to help me because I’m “engaged in drug-seeking behavior.” Wow. Seems to me he’s right (for the first time that night). I informed him that I was a psychology major, understood his terminology, and agreed. Yes, I am in severe pain and I am seeking drugs to relieve it. Then I suggested he page my surgeon. Well, that request was refused. Apparently, my surgeon needed to be associated with their hospital in order to be paged. I had my surgery at another hospital because that’s where my surgeon had priviledges at.

    Finally, the doctor came in. Yes, I waited another hour alone in Room 3. (The ER was empty that night so I don’t know what the hold-up was.) The doctor had already been prepped by Nurse Dick and believed I was a drug addict. I tried explaining my situation and pointed out that I had surgery 5 days earlier. He also accused me of engaging in drug-seeking behavior. I said, yeah, you know what, I am. I need PAIN MEDS NOW! I ripped off the gown — at that point I didn’t give a shit who saw me in my undies (at least they were clean). I got dressed and left. I spent the night curled up in a ball, rocking back and forth trying to ease the pain, and whimpering (cuz it hurt too much to cry). Had my surgeon paged in the morning and got my prescription filled.

    Lessons Learned:

    1. Bring a letter written by your neuro/GP/other doc stating that you suffer from XYZ and they (the ER staff) should give you what you need for pain treatment. The letter should also state what pain meds the doctor recommends, and requests that the doctor is to be paged if they have any questions.

    2. Write down a list of all pain meds you’ve tried. Write down which ones worked and which didn’t. Also note why certain meds did not work. In my case, I cannot take codeine because it gives me horrible nightmares and increases nausea. I cannot take Percocet because it is too strong — like drinking 10 cups of java at once and I’m up all night (being very productive, of course). It also makes me scratch all over like a “crack addict.” Share your list with all your doctors.

    3. Being knowledgeable about your own pain management and health issues impresses the medical staff and they are more likely to believe you. Do your own research! Ask questions!

    4. Take a friend with you when you are too sick to advocate for yourself.

    5. Insist on being treated with respect. Make written complaints when you are not. (Yeah, this takes time, but we gotta be the change we wanna see, right?)

    Sad to say, but I have to agree with Jeannette “The spectrum has swung way too far the other way and now the patients with chronic pain are suffering.” The focus in the last few years has been to train medical personnel to recognize drug abuse. It is time for their training to include recognizing patients with chronic illness and learning how to treat them with the dignity and respect they deserve.

    Ok, ‘nuf said.

    • Amen! I can’t take Percocets either. They makes me sick as a dog – my head swims, I get dizzy and foggy headed, and I itch all over as well. Odd.
      Nasty little suckers. We need to make a stink and tell these docs we aren’t going to take it anymore!

      • TheDailyHerb

        I think that telling your doctor about pain meds you don’t tolerate (and describing why) gives you (the patient) credibility in their eyes. Here’s how the conversation goes:

        Describe pain (do not cry). I am requesting pain meds to treat the pain related to “Name of Condition.” I have found that “Name of Med” does not work for me because “Describe Symptoms.” (Go through all the meds that don’t work one by one). I have found that I best tolerate “Name of Med” (or meds) because I get pain relief without “list bad side effects.” This allows me to (you get the idea).

        But, having said this, there are STILL medical practitioners (nurses, doctors, ER staff) that will view you as an “addict engaged in drug-seeking behavior.” That’s why it’s good to follow 1-5 above. 😉

  4. Thank you so much for writing about the difficulty and sometimes humiliating process we endure while trying to get some much needed relief! When I wrote to you on the 29th(May) I was feeling so alone-I had never even read a blog about endo(!) but now,even though I am dragging and hurting, I feel like I have a voice. I don’t have my own blog-site. I’ve just started reading all of these wonderful blogs from/about incredible women who share their lives not only for themselves but for all of us who have suffered in silence!! I am just so grateful to you for touching on this subject. I am not alone, I am not alone, I AM NOT ALONE!!! Keep up the great blogging, ladies ; )

  5. This is a fantastic entry. In fact, I like your whole blog. I hope you don’t mind that I’ve added you to my blogroll. You’re the first!

  6. Hi, I wanted to share with you my story as well. Maybe give you a diffrent perspective to what we all are
    suffering. As a girl my impression of the world was one of inequality. I felt that boys got more freedom & privileges. From there started my journey of low self esteem. I hung aground with boys, intellectually challenging them, choosing electronics over home science, just to prove I was good enough. Outwardly no one could make out this fight that went on deep inside me. Marriage at 30 had given me a beautiful baby girl followed by a bad post natal. It was then, 5 years ago that I encountered Nichiren Daishonin’s Buddhism. Benefits started pouring in my life. A house, stable job & financial abundance but I was still waiting for the sun of absolute happiness to arise in my heart.

    3 years passed by. In a spontaneous full health check, the sonography showed cysts on my ovaries, a condition called Endometriosis, something I had never heard of before. I had been experiencing abdominal pain for close to 3 years, but no one ever diagnosed this. Research on this diagnosis shocked me. No doctors, no website could not say what caused it or what was the cure. All my life, I had begrudged being a girl and now my female system was malfunctioned. The workings of the Law of Cause and Effect. The effects for me now were infertility, constant pelvic pain, severe fatigue, low energy & mood swings. Medication also did not help & I went through a very painful removal of one cyst which came back in a few months. I felt unfortunate. My life condition became that of self pity & complaints. Life seemed a bagful of responsibilities and no energy. I got introduced to homeopathy medication and found some relief with the pain.

    I came across Dr Daisaku Ikeda’s guidance ” For all you know, you may have been saved from a much bigger tragedy.” Unquote. In an instant I recalled the words “NOT MALIGNANT” from the report when my endometriosis was diagnosed. Instead of begrudging I decided to do something about this! I knew that it was the manifestation of my own karma that I was in this condition. I chanted with deep gratitude and overcoming my laziness I started doing 1 hour chanting every morning before leaving the house. I started chanting to discover my profound mission that lay behind my suffering

    My mood swings were still getting the better of me. On days I was this perfect angel and then some days I turned into a devil. Saying and thinking the most despicable things imaginable. I was hurting and alienating the people who genuinely cared for me. I would immediately regret but it used to be too late. I just could not control what I said. This increased my frustration & desperation. Buddhism teaches “Thoughts, words and actions create karma”. And I was creating only negative karma. I researched a bit on what caused mood swings. Hormonal imbalance? Imbalance! But hadn’t that been my predominant life state from when I could remember. Feelings of inequality, disharmony with self and environment was what I had always experienced with all my actions revolving around it.

    Isn’t equality and balance the law of nature itself? Co –existence is the dharma of the universe. My fundamental darkness’s were causing everything. Buddhism talks about “changing poison to medicine”. I now see mood swings as moments of immense passion and pledge that I will channelize this into positive for creating immense value. Irrespective of being men or women, we all have the same Buddha potential in us to tap. In the guise of my mood swings I only given hurt by saying horrible things, so loving myself now seems inconceivable. How do I undo all that I have done? Nichiren Daishonin says & I quote “It is the heart that is important” unquote. I determine to make my heart so beautiful to only feel compassion, caring and respect for others.

    I determine to reach out to all women in the world who feel suppressed to discover the balance and equality that exists inside of them and also in the universe. I determine to start an Endometriosis Support Group

  7. Thank you so much.

    May I repost your entry in the sidebar of my blog with full credit to you?

  8. Of course you can, Steph!

  9. Pingback: We are not seekers

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