When I say the seven days of last week were the epitome of an absolute disaster of epic Murphy’s Law proportion, I’m not exaggerating. I am psychologically traumatized by the amount of roadblocks that emerged in just trying to carry out seemingly easy decisions the doctor and I agreed on.
It’s hard to convey how defeated it feels to be so desperately reliant on a health care system that appears to lack any incentive to see that you’re taken care of. Pull yourself up by your own bootstraps is a phrase I’ve heard all my life. There was a time when that was possible and I had no excuse not to be totally self sufficient. But that all changes when you lose the reliability of your body. It’s like trying to beat a video game with a broken controller in your hands.
I feel trapped. Chained to a medical network where in every domain outside of actual face time with the doctor, I am a policy and not a patient. Whether I have access to what is necessary to maintain any health seems to have become almost anecdotal.
My time and energy are consumed by the position of full-time liaison, constantly navigating the logistics between the doctor, the doctors own front desk staff, the pharmacy, the insurance company, and adjusting to the perpetually changing federal laws that affect the dispensing of my medications. Maybe it’s this easy to fall because there are so many gaps between doctor and patient, and they’re widening all the time.
I can’t remember when this part of life with chronic illness became harder than managing the physical illness itself, but that’s where I am now. I’m also realistic and understand that in the context of a multi-systemic disease like M.E., a lot of my time will go to doctors and exams and bloodwork and prescription refills and pickups and insurance appeals etc. etc. etc. That’s simply part of life when you’re sick and I accept that part. (See photo)
What I struggle with is the fact that maintaining my healthcare has become a battle. Keeping up with the aforementioned aspects of my health between doctor appointments is a fight, as constant and reliable as the disease I wake to everyday.
This probably all sounds generic and obvious to say; But I’m not actually referring to the conventional financial or accessibility issues of our system. I have health insurance. I’m not talking about having an inadequate plan or the absurd price of prescription drugs or the lack of access to good doctors. On the whole I have great doctors. So why, when it comes to that crucial part of fulfilling the medical plan that a doctor and I have decided is in the best interest of my health, am I met with constant resistance from the moment I step out of the exam room?
That resistance fought me at every turn, every day last week. Beginning Monday, the said battle of having my health needs met ensued due to simple administrative mistakes, systemic gaps, and changing federal laws that made shitteth hitteth the fanneth. I will share how the system tends to fail with the slightest pressure, but first I think it’s important to explain my current state of health and why I require the doctors, treatments, and care that I do.
I am writing about this not to pettily vent or point an ambiguous finger—believe me, I’d rather forget it ever happened. But last week was not a fluke. This happens constantly, and it will happen again. But if a chronically sick person with good health insurance and good doctors has to fight this hard and often lose when it comes to basic needs– like prescription refills and scheduling timely follow-up appointments– something is broken. Maybe by highlighting how laws, policies and medical personnel affect the health of an actual person, it may somehow in the end help fix or improve them. Maybe I’m dreaming.
**State of the Human**
Most are familiar with my physical circumstances. Quick status: I’ve been fighting a chronic disease that lacks treatment or cure since I relapsed a decade ago. As a result of many things going awry in my body, I am in pain all the time. Without precise disease treatment, the best we can do is manage the many symptoms of M.E. In my case, fighting chronic pain is the hardest part.
In both legs I have something called small fiber neuropathy. This is a deep ache, basically everywhere there is skin, and typically a burning in my feet and calves, especially if I stand for more than 15 minutes. My feet often get physically hot and sometimes swell, as though I were some pregnant broad, but nope! All of this began around age 25, when the restless leg syndrome also worsened at the start of my relapse. It’s like an electrified current running up and down both legs that won’t turn off.
Untreated, my legs ache and burn constantly, but worst of all, they make sleep impossible. At best it comes in one to two minute fits and bursts before the pain wakes me again. Imagine being pricked five times by a safety pin every 90 seconds throughout the night. You’re getting there…
Beyond my legs is my head. Or my brain I should say, because that’s where the pain feels like it’s emerging from. It’s as though my brain were swollen and pushing against my skull from the inside. It’s a chronic pressure and pain with very frequent migraines. Five years ago the pain moved into my face—not an acute pain, a widespread pressure pain like a tension headache, but beyond my forehead it extends to the top of my head, down to my cheeks, jaw, and even my mouth sometimes. On bad days it’s just my whole head.
Some other treatments have included steroid injections in my head and back of my occipital nerves, as well as lidocaine injections in my face to help control/ disrupt this pain.
Perhaps underscoring my head pain are the issues with my neck. I’ve had a “bad neck” the way a seventy-five-year-old has a “bad back” since high school. There’s a good chance some of these neck issues are driving the head and face problem, but we’ve not been able to land on anything definitive. Trust me, we’ve tried, and we will continue to. We’ve spent years and years searching for answers, visiting doctors, & trying a lot of techniques—from chiropractors to physical therapy to acupuncture/cupping to two weeks of ketamine infusions (That’s a story I’ll tell soon because…Damn.)
Lastly I’m dealing with chronic interstitial cystitis pain that resurfaced in December with an infection. We treated and “cured” that with antibiotics, but the pain and symptoms of IC decided to stay. In July those symptoms worsened drastically and have added to my pain load. I am hoping and praying and trying a lot of remedies (including homeopathy) to get the IC under control, but it’s not been easy. I didn’t know it was possible to pee more than 30 times a day but guess what? I think I hit 40 once.
We recently had my MRI’s looked at by an M.E. literate 3rd party who pointed out abnormalities on my brain stem and cervical spine. One included a minor CSF blockage and bursitis on five disks. These structural issues would likely explain a lot of my pain problems and may even be responsible for other symptoms like those from dysautonomia.
Some of these abnormalities can be fixed with surgery, but I have to see a specialist who would decide ultimately the best course of treatment. If it meant the possibility of an end or improvement of this pain, I’d go under the knife tomorrow. I’m ready for my life to start in so many ways, and I do believe we will find an answer to all of this. In the meantime…
Due to this constant high level of pain, I see a specialist and take prescription pain medicine, as well as undergo nerve blocks, trigger point injections, and live with an ice pack on my head to help find relief. This combination of treatments help keep my high level of pain down to a more manageable one so I can have some quality of life. I have not changed the medicine in eight years or the dose in more than four. Want to see what I look like after a nerve block?
I’ve provided my situation regarding pain because this is where most people have a strong opinion one way or another, and more often it’s that you’re just being weak, don’t really need it, or you’re treated like an addict. Often that attitude comes from front desk staff or a pharm tech filling my Rx! I wish this perception would change and that people understood there are millions like me; prescribed to this medicine for the reason it was created: to alleviate physical pain. We take it as prescribed and there’s no misuse. It’s a matter of livelihood. That’s. All.
Having to rely on medicine to evade my natural state of pain is not something I’m happy about or proud of. I’m also aware it’s not a ‘solution.’ But I do know my life would be unequivocally crappier and less functional if I had to face the world fighting such a high level of pain 24/7.
For that reason, I’m grateful for my doctor and for medicine that provides some relief. Until science catches up with understanding my disease and treating it, this allows me not to be tortured at all times. I don’t think that’s anything we should have to feel shame about.
There, now you’re caught up…on one part of the battle ;) More on last weeks clusterbiff and how to prevent it, coming up.
Health, Happiness, & a 10 on the Pain Scale
4 thoughts on “Navigating Healthcare When You’re Chronically Sick *and a Chronic Pain Patient (1)”
Great writing Mary! People need to hear your story! I feel aweful you are in so much pain, it doesn’t seem fair, but I’m praying for relief, and hope you know what a positive example for those around you. Keep up your insightful ness and know that we’re with you in this fight.
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Thanks Nicky tricky! Don’t worry, thanks to modern medicine I’m NOT in pain all the time, and I’m praying that we can find an equivalent doctor in Colorado (or that Brenda cures me:) mom said last night my blogs are too long and she stopped reading them. Well, Can’t please everyone I guess haha. I’ll be better at keeping up with the writing, but I want to thank you for your constant encouragement and reaching out to me. It makes a big difference and I need it! Thank you for everything you do for me. I hope to see you and yall soon 😉
Yep. I’m being forcibly cut down on my pain medications too. I was stable for years on my medications, and then my doctors license was threatened if he continued to prescribe. I don’t want to lose my job and my life and my ability to be a parent, but i also don’t want to be the reason someone else can’t provide for their family. Little by little my meds are being reduced. And I’m scared – I’m scared to lose my practice, for my kids to have a mom who’s constantly in pain, for my house to be a reflection of everything i don’t have energy for… i don’t understand how the CDC can say everyone who’s taking these medications are the same. We’re all addicts, we’re all risking our lives, and we all should be able to survive on 50cc morphine equivalent. Being on this medication for 17 years – never asking for an increase in dose, never doctor shopping, never refilling early… I’m not in the category of people they’re trying to protect against. Yet, im now at risk of losing my life in a different way. I’m not going to overdose on opioids, but i am going to be unable to work, lose my home, and be unable to do everything that makes me who i am, specifically parenting two young kids, ages 5 and 2.5. It’s not fair. People are killing themselves because their livelihood is taken away, and we’re supposed to just understand because people who misuse opioids – not pain pills most of the time, but heroin and fentanyl, are dying. And there’s nothing we can do. They have our doctors by the necks, so what are we supposed to do?!
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Ali, I am so sorry to hear that. I hate that they treat all of us as drug abusers, when so many of us are just trying to have some form of life that is manageable and not in ongoing pain. I hate that they include “heroine and fentynal” under the heading of opioid deaths… not an accurate representation or picture of what’s actually happening at all. Unfortunately as a result, pain patients are paying the price, and drug abusers still get their fix. It’s messed up in more ways than one. I’m so sorry to hear you are but one more patient who’s meds have been reduced because of those that abuse them. I assume you’ve looked far and wide for doctors that will treat you (mine is an hour away) but he’s good and worth the drive, even if his front desk staff is a mess 😑 I would say keep looking for a doctor that treats you adequately, because living your life in pain that way puts so much stress on the body and mind and I know you already know it. A good doctor makes all the difference and I’m hoping for your sake that you find one. Hang in there buddy, a lot of people are right there with you. Keep in touch and let me know how you’re doing. Praying for the best,
Mary (and Monty)