Strangulation on Medicine: My Life as a Pain Patient

Imagine, if you will: Waking up morning after morning, with sudden, inexplicable, extreme pain in one side that leaves you bedridden for a few hours, then a few days, a few weeks, a whole year.

Imagine not being able to find the source of the pain. Spending every week with a different doctor. Spending at least $200 on each doctor. Trying at least one new prescription every month. Spending at least $30 on each prescription. Watching the medical bills pile up, knowing you are the sole cause of each one.

IMG_9121_1a_watermarkImagine watching your young children struggle to learn to live without you. Being unable to volunteer at your child’s school because, although you have the time, you don’t have the physical stamina. Being unable to attend most school events, and seeing the disappoint on your children’s faces when you have to tell them, “I’m so sorry, baby, Mommy just can’t do it.” Spelling bees, science fairs, choir concerts, end-of-school picnics, and most painful, 5th grade graduation.

Imagine seeing your spouse become literally bent over and graying early under the stress of being essentially a single parent, plus the stress of being a full-time adult care-giver, while holding down a full-time job, and doing all the cooking, cleaning, and fixing, while also going to school part time.

Imagine being unable to visit your beloved, aging grandparents who live 5 hours away. Or being unable to visit best friends who live 1 hour away. Being unable to attend weddings of dear family and friends because they are “too far away” at 30 minutes to 1 hour. Being unable to travel more than 15 minutes by car. Being unable to walk more than 10 minutes-on a good day.

Imagine being a house-bound invalid at age 31, feeling your muscles becoming a little weaker every day. Swallowing your pride to buy a cane, and using that cane (in public) to support your bad leg on those lucky days you do get out. Imagine shopping for electric wheelchairs since not walking seems to be the new normal, and you are being driven crazy from being stuck inside for so long. Imagine shopping for walkers at age 31. Imagine the embarrassment of personally knowing many people, twice your age, more active than you.

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Me, my dog, and Poe. This is where and how I spent much of my life for 2 years.

With “Care” Like This…

Imagine having your insurance company refuse to pay for things that might shed important light on your problem, or help make it better. Things like MRIs, prescribed back braces, insurance-required physical therapy, any number of expensive drugs or treatments.

Imagine having your primary care doctor whom you’ve known for 7 years, refuse to treat your pain, because new laws prevent him. Imagine him suggesting you are overreacting,and your pain can’t be as bad as you say, even though he just looked at your x-rays and declared your problem will never get better, and cannot be fixed.

Imagine your doctor prescribing a medication that does nothing for your pain, but causes brain dysfunction in the form of a manic episode. Imagine that when you tell your doctor this, he suggests you see a chronic pain specialist who cannot see you for at least 1 month, will insist on giving you invasive, risky, epidural (link) injections that may or may not help your pain, but are terribly expensive and painful.

Imagine your doctor, after telling you you will not get better, brushing off your request for disability papers because you are “too young”. Imagine your doctor brushing off your request for an expert opinion in the form of a neurosurgeon referral, or brushing off your request for further testing.

Imagine, if you will: Being unable to think or work. Imagine feeling so very tired all the time, or anxious too often, or deeply depressed. Imagine feeling worthless, no, more than worthless, a real burden on the ones you love most financially, emotionally, mentally, and physically. Imagine wanting to end your life, and planning it, at least once a week. Imagine crying for hours at a time, because there seems to be no end to the pain, the frustration, the uncertainty, the bills.

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The Solution to Your Problem is Simple…

Now imagine, if you will: At the end of the year, finally having your chiropractor (whom you have been seeing for insurance-required, but not insurance-paid physical therapy) order an MRI. Imagine, after a fight with your doctor who was annoyed you went over his head and had an MRI, while also insisting on a neurosurgeon referral, finally landing a doctor who reads the x-rays and MRI, understands your problem and (could it be possible after all this time!?) fix it.

Imagine hearing the news you were dreading, that you will need a spinal fusion (a major, delicate surgery, with a long recovery) and discectomy; that your lowest vertebrae are separated, and have been for years and years; that this has allowed a spinal disc to slide out of place, forcefully compressing a nerve; that this is the cause of your inability to walk, to ride in a car, to sit comfortably, to sleep through the night, to live well. Imagine scheduling your surgery and feeling like all the pieces are finally falling into place; there is a light at the end of the tunnel!

Imagine, if you will: A slow recovery that begins with immense pain and not being able to walk, to dress yourself, to bathe yourself, to lie down, to sit outside. Imagine feeling very old and very frail. Imagine every month expecting to turn an invisible corner in pain relief, energy, and movement ability, but only seeing little, gradual bits of progress here and there. Imagine that month 3’s post-op big accomplishment is going to the store (accompanied by a driver, because you have hardly driven in well over a year), by using the store’s electric cart and your back brace. Image month 4’s big accomplishment is making it through a brief session of physical therapy without needing a 3-hour nap afterwards.

The Right to Suffer:

Imagine everything you do/can do depends on how well your pain is managed: Getting necessary and wanted exercise; getting (finally) out of the house; getting around the house; sleeping through the night; doing a few light chores; having the energy and ability to focus on things you love like reading, playing board games with the kids, having visitors over, sitting in your garden swing, or just laughing.

Now imagine, if you will: Your surgeon, the only one familiar with your case, your surgery, your history, not legally being able to manage your pain after just 3 months. Imagine being referred by your surgeon to your primary care doctor, who refuses to treat your pain (but only tells you that after an office visit), and refers you to a chronic pain specialist who cannot see you for at least 2 weeks, who has little knowledge of how to treat acute (short term and surgery) pain, who has little knowledge of spinal fusions or surgeries in general, who changes your medication 7 different times in 3 months, who prescribes super-expensive medicines that you cannot pay for, who prescribes medicines that make you so sick, you are either in bed or in the bathroom all day, meaning your spouse must work from home to watch the kids, making you worry about his job security, which makes you anxious for how to feed your kids.

pain scale

Imagine this chronic pain specialist under-medicates you for 3 months, insists on treating periodic, break-through pain with 12 and 24 hour narcotics which make you sick, which are MORE likely to produce addiction. Imagine, that despite doctors’ promises about proper pain management, when you finally refuse to be a guinea pig anymore, and ask for the simple, effective, economical medicine option, you are treated like an addict despite all the urine tests you’ve taken to prove you are not, despite the good faith contract you signed at the office just to be seen, and despite all the paperwork that double-checked your claims, medical history, and medicines across your entire provider network–hey, whatever happened to HIPPA laws?

Doctors said that the vast majority of the patients who need pain medications don’t abuse them. Source

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The way is shut.

Imagine having a pain specialist who you cannot get in touch with for 3 days when your latest prescription, filled only 3 days prior, gave you diarrhea, chills, major migraines, insomnia, and finally a psychotic episode in which you cried for 3 hours and stormed out of the house at 5am, pacing the front yard like an animal as your spouse watched horrified from the front door.

Imagine having a pain specialist who accuses you of breaking your signed pain contract with them, because you told them in order to make it through the weekend, you had to cut old medicines from right after the surgery in half, since you couldn’t get in contact with them. Imagine having to tell them this, because at first they thought you hadn’t taken anything over the weekend, therefore you didn’t “need anything now”. Then imagine them dropping you as a patient like a hot rock.

Imagine:

Without pain management, not only can you not do what you need to or want, you begin to get cranky. You lash out at your kids and spouse without reason, like an animal in pain, because that’s what you are. Imagine finally collapsing into a tired, depressed heap, contemplating the cleanest ways to end your life, to end this pain for good.

Imagine:

  • Knowing that government officials who don’t know you, who are not doctors, who don’t see your pain, assume you will abuse the legitimate medicines that make life livable for you.

  • Knowing that these officials have made it effectively, though not “technically”, impossible to get what to you, is truly a life-saving medicine.

  • Knowing that the “stats”, “facts”, and “research” that are behind the new laws that have made it impossible for you to get help, are very, very skewed and without actual merit.

  • Hearing glib, pain-free people cheerfully announce that exercise, meditation, and a funny movie will remove their pain as well as any pill.

  • Knowing that real drug abusers who have been breaking laws, can get their addiction meds, often free, while your legitimate, provable, documented, legal medical condition is treated with contempt by law makers. *Sign a petition here!

  • Knowing that pain patients all over America, “the land of the free”, are needlessly suffering so that some politicians can look good in photo ops and in newspapers.

  • Knowing that we don’t allow animals to suffer like the laws have made actual people suffer.

  • Knowing that pain patients have a small voice, because they are too broke from trying to follow the burdensome laws suddenly imposed on them for things outside of their control; because they are too tired from fighting pain and doctors all day, all week, all month, all year long, to use the last of their energy to make their voices heard in politics, rather than spending time with family.

Imagine:

Spending all day trying to find another pain specialist, but being told by the first promising 4 they would not take acute pain cases, and could not recommend any one who would. Imagine calling your surgeon, desperate for help but being told their hands were legally tied. Imagine calling your primary care doctor, but being told they would not do anything, and to go to the ER if the pain “was that bad” (it’s not; you don’t need morphine injections, you just need something a bit stronger than acetaminophen, and you certainly don’t need an extra $6,000 medical bill).

Imagine not being able to take even ibuprofen, per your surgeon’s instructions, or being afraid of liver damage from too heavy acetaminophen use, or being on the phone for 5 hours, trying to find someone, anyone who can or will help.Imagine hanging up exhausted at the end of the day, and having nowhere to turn.

While nerve pain seeps into your side, your muscles begin to stiffen, and you desperately try to ward off an aching back and tailbone (you know, those parts that were recently severed and have bones, new hardware, and deep tissue working to heal) by sitting on an ice pack. The ice pack your now-defunct pain specialist told you not to use (although your surgeon recommended it), along with discontinuing those muscle relaxers your surgeon prescribed.

Imagine all this, if you can…

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Take a walk in my shoes

See also: On Opioids: OneYear After DEA Reforms and On Opioids: America’s Drug Addiction and the Wacky Laws that Perpetuate Them


*If you liked this post, please consider subscribing to my blog for just $1.50/month.


 

Take Action Now!

Garnering Support for Pain Patients, Media Sample Letter

Garnering Support for Pain Patients, Political Sample Letter and Petition


Learn More:

Opioid Epidemic, Drug-Mix Overdose Death

Pain Care Shouldn’t Be Political Theater

19 comments

  1. Brenda Sue

    I am SO sorry to hear that you are living through this Pain Management nightmare…. and it is just that… a screaming nightmare…. When you first wake up to discover that your pain isn’t a “medical condition” that requires compassionate medical treatment…. oh NO it isn’t… How naive it feels when this comes to fruition…. Your story reads a LOT like my own… it is unfortunate and heartbreaking… it took me 5 months of being under medicated.. having to use Same Day Care, (same as ER), and finally finding a PCP that was compassionate and intelligent enough to bridge me to a new PM appointment… A dishonest doctor that didn’t want my long term care in his practice lied twice to say I was “drug seeking” and “doctor hopping.” (He created the situation) Horrible, horrible 5 months…. You are not alone….. It is a very real every day, 24 hour reality in my life as well… I am blown away and disillusioned. Take good care everyone… and may all your paths lead to compassionate, realistic, and un-fearing practitioners.

    Like

    • Loura Shares A Story

      Thank you for reading and commenting, Brenda! I am so sorry to hear of your pain, and hope that this medical mess will soon be sorted out. I am learning more every day about conflicts of interest within doctor offices and pharmaceutical companies, bribery of political officials, and more. This rabbit hole goes deep!

      But I am also hearing more about brave, good doctors, willing to stand up for their patients, as well as a few good politicians not motivated by money and who are quite disturbed by this recent trend. They are speaking out, and pain patients are speaking out. We will make this right. 🙂

      Like

  2. Alexandra

    I am very sorry you have to go through all of this. It is very angering and frustrating. Just try to keep positive and don’t ever feel guilty or a burden – it is absolutely not your fault. I truly hope everything gets better for you. I have had some bad experiences with doctors but never something rising to this scale not to mention how expensive health care in the us is along with stupid painkiller laws that only harm those in pain- I honestly don’t even get how someone wants to take stuff like tramadol for a “high”, it is NOT pleasant to take and often makes me feel like a total zombie. I just don’t get it. I feel extremely lucky I am not living in the US. You are a warrior and a very strong person! And you have a very cute good to cuddle with 🙂 . You will get through this! 🙂

    Like

    • Loura Shares A Story

      Thank you, Alexandra! I really appreciate your kind words. 🙂 I likewise do not understand the desire to get high off these things. I don’t even like feeling tipsy!

      Like

  3. karen moore

    Thank you for such an incredibly well written article. I am 68 and have been suffering with spinal stenosis, cervical stenosis and arthritis in almost every joint in my body. I am embarassed that I have to spend so much time in bed. I am comfortable on my side in a semi-fetal position and am mostly pain free. I need help from my husband to get out of bed. \he is a god send..we have only been married 6 years and he certainly got more than he bargained for. I am on hydromorphone which is minimally effective, but it does take the hard edge of the pain off, but it does make me dopey, hense being in bed a lot. \in Canada our drug laws are somewhat differen than the u.s. and I dont have a problem getting my meds. I have just been diagnosed with metasses in my lungs from kidney cancer five years ago. The oncologist is holding off treatment until we see if the lesions are growing.
    I was seeing a pain specialist for 3 years before I moved to a new city last year. He suggested when I left that I should see someone new who might see me in a different light and offers something new. because of the cancer I have not done that yet. sorry for such a long post.
    I wish you well and am sending positive thoughts to you. thank you for sharing
    karen

    Like

    • Loura Shares A Story

      Karen, I am so sorry to hear about your pain and recent diagnoses, but am glad your husband is so generous and compassionate. I am very thankful to have such a husband as well :). Thank you so much for reading and commenting. You are too sweet, and are in my thoughts also. Please take care.

      Like

  4. Paul Winn

    I am the Ga rep for PNA ( Patients Not Addicts) and we are fighting the CDC and the FDA. I know some people abuse there meds. But there are ways to find out if they are.The Gov needs to keep out of my medical care.

    Like

    • Loura Shares A Story

      Thank you for reading and commenting, and thank you for advocating! I don’t believe this is about addiction at all, but forcing average folks to increase drug companies’ revenues. That’s my next post, coming soon.

      Like

  5. Janet B

    Your blog is very well-written, especially this article. I’m an admin for the Mesh Problems Facebook group, and have been in constant, severe pelvic pain for the past 6 years, since I was implanted with a transvaginal mesh bladder sling in 2010. So far, 7 surgeries, years of pelvic physical therapy, multiple nerve block injections, and 6 years of being a pain management patient – all because manufacturers of plastic pelvic mesh slings failed to warn doctors that the product they were implanting into their patients was defective, not meant for human implant, would erode through nerves, organs, tissue…and was permanent. Finding at the young age of 40 that my future included never again being able to sit, have sex, work, or live without pain management/medications. And never again having a minute without pain. There are 1600 members of our group who all will appreciate and understand everything you’ve written here; thank you for putting into words what many of us go through every day. And there are 100,000+ women in the USA alone who are permanently in debilitating, horrific pain from transvaginal mesh bladder sling implants. Sharing this on FB and Twitter, hoping that many of these women will read this and not feel so alone. Thank you! ❤

    Like

    • Loura Shares A Story

      Oh my goodness, Janet. I feel like my problems pale in comparison. I’m so sorry for your suffering. Truly, my recent networking with other pain patients has been a staggering eye-opener. So much pain… 😦

      I appreciate you taking the time to read and respond. Thank you.

      Like

  6. ladybrat2332

    Sweet pea, I felt/feel you pain everyday. Have walked that rd but it started back in 1982 when I was 22 yrs old. I’m now 55 and it’s SOS.. you know same Ole same Ole. I have been on opioids for the last 15 yrs after 3 back surgeries, countless injections. But that’s all in my lower back. The Stenosis, bone spurs, arthritis and bulging disc in my neck that cause a headache EVERY SINGLE SOLITAIRE DAY of my life for the last 8 yrs, nobody seems to want to do anything about. I like you was kicked out of a pain center I had been going to for 15 yrs, for a bad drug test… had been going for 15 yrs and they HAD NEVER found pot (I don’t do pot) but some strange reason last May they did. Luckily my family Dr took over my pain meds. My life like yours now consist of bed, couch, sleep and isolation. I would love to be at one of those government meetings they have about us and our meds….

    Like

    • Loura Shares A Story

      I’m so sorry! I was just reading on another site about those urinalysis tests coming back with false positives for some people, but most had no recourse to contest the findings. Another frustrating aspect of all this, is people need exercise to heal, they need fresh air/out of the house, they need to have some kind of job/mission they can do, but none of this is possible without pain medication. Without it, you are too miserable to move, and not only do people not heal, they get worse physically, mentally, and emotionally.

      Like

  7. Julie

    Not only can I imagine this, but I could’ve almost written this same thing verbatim as my own story. Non chronic illness patients have no idea how this system is failing and killing us. Thanks for writing this.

    Liked by 1 person

  8. handselkoan

    I cannot imagine that. I have never suffered nearly that much. But, as you wrote, I am aware
    “that pain patients have a small voice, because they are too broke from trying to follow the burdensome laws suddenly imposed on them for things outside of their control; because they are too tired from fighting pain and doctors all day, all week, all month, all year long, to use the last of their energy to make their voices heard in politics, rather than spending time with family.”

    I do not mean to belittle your suffering, or divert the due focus for it. I do want to say, though, forcing those without means to endure unconscionable suffering in order to prevent their changing fundamental forces at play–only to improve a suffering person’s own position in the scheme of things–is an injustice permitted and done by design to sustain the avaricious cycle by few in power. This is exactly what our society does, and it is not a question of capitalism versus any other economic system. It’s merely petty people with too many resources and too few morals.

    Your story is one facet of a wide, unbelievably greedy civilization, in which are many earnest people who are unable to change how it all functions pay for it. I am sorry it must be so for you, and I am sorry it is only one part of the trap we are all in if we don’t make $40,000 or more after taxes on one person’s income. Please do not take this as an attempt to minimize what you go through every day, I just wanted to say it’s not the ONLY way good people are made to live with too little: all on account of pride and lust for control.

    Liked by 1 person

    • Loura Shares A Story

      “…petty people with too many resources and too few morals.” Yes, I sincerely agree. I hope to write a part two to my DEA reform article soon, exploring some of those people and their motives. And you are, sadly, too right, that this is only one small facet of much, much larger problem. That’s why I’ve decided to go into politics (“someday, somehow”) much like Mr. Smith went to Washington. Once I figure out the details, I’ll let you know. 😉

      On another note, I really appreciate your readership and comments, encouragement, support, and insights. Thank you. I realized today, in looking over some old posts, I never followed up on comments from last year! I will strive to do better. 🙂

      Like

  9. Pingback: On Opioids, One Year After DEA Reforms: Part 1 of 2 | The Rambling Soapbox: Writings and Thoughts of Loura Lawrence

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