I did my first interview! Big yikes.
It was a little weird to talk about myself (in writing I do it all the time, but to a stranger?! On the phone?!). It was a lot of fun though, and it has really given me the impetus to get movin' again in terms of posts.
Big shout-out to "The Healthy" for the feature, and Alyssa Sybertz, the author! The title of the article is, "My Severe Back Pain Turned Out To Be A Hip Misalignment."
Read the full article here.
I know I haven't posted in a while, life just got in the way! Remember that time I decided to redo my kitchen myself? Greeeeat idea.
But seriously, I'm happy they featured my journey to get a diagnosis. Don't ever stop looking for a solution! It can be awful, and hard, but you are so worth it.
How do you medically advocate for yourself? For those of you that follow along, you know that I went to the Cleveland Clinic main campus ER about a month ago for a severe back pain issue and the experience was less than stellar. It was actually awful, mainly because the doctor failed to adequately manage the pain, attempt to find a diagnosis, or come up with a treatment plan. I did a follow up post regarding the very well documented dismissal of women, people of color, people of size, etc. who complain of pain. So now, the final post - how to medically advocate for yourself.
It's important to be able to do so, especially if you're an adventurer, because even if you don't have chronic pain there's a fairly high likelihood that you'll injure yourself in some way at some point.
So here's a few tips and tricks to make sure that you're diagnosed and treated.
Do not let them shame you. Being fat or old or gay is not a moral issue. YOU ARE A PERSON AND DESERVING OF TREATMENT.
Do not allow yourself to be dismissed - you know your body - insist on care. It could save your (or a loved one's) life.
If you're doctor isn't taking your pain or issue seriously, ask for another doctor. You're having real fucking symptoms, don't let them make you feel bad for having them.
When my grandmother had a stroke, she was definitely not getting the care she needed at the rinky dink hospital she was at. They refused to do any tests to see if she'd had a stroke, etc. In fact, they insisted she was simply dehydrated and refused to do anything at all except IV saline. We insisted she be transferred to another hospital, which took my father and I driving to main and not budging an inch. The doctor was later fired, and my grandmother was transferred to a larger hospital able to get her the care she needed (and responded to).
If you have a chronic issue or long-term disease, carry your medical records with you. You can get a free dropbox account to store them, or email them to yourself. Don't depend on your phone, in case you don't have it when you go.
Next, question, question, question and be sure to communicate concerns and desires. There are some questions you can write out beforehand (and give to a friend), so they're stuck in your mind and ready to go. When in the ER, especially, it can be stressful and overwhelming, making it very easy to get confused/forget to ask the important stuff. Some questions to ask if you go to your regular doc/doc in a box:
- What do you believe the issue is?
- Why do you believe it is xyz?
- Is there a test to confirm that? Why are you/are you not confirming?
- I am in a significant amount of pain - what is the plan to treat it? Why are we treating it in that way?
- Why hasn't my pain been addressed yet?
- If your symptoms persist, do NOT be afraid to go to another doctor, even if you like the one you have. Different doctors have different knowledge bases and experiences.
If you’re in the Hospital or ER, then add these questions on:
I'd like to mention that the Cleveland Clinic is one of the top rated hospitals in the country. I have had wonderful treatment there. However, this ER needs to get its shit together. I still have nightmares about it.
I'm definitely implementing these, so I can be better prepared if there's a next time. Hopefully, they also help you or a loved one. If you have any tips to add, please feel free to comment below or contact me here.
The pain is just in your head...that's how I felt when I went to the Cleveland Clinic downtown ER just over a week ago. The doc implied I was in pain because I was fat, had over-exercised, or that I was simply drug seeking. It was such an awful experience that I wanted to see if I was the only one. I felt very much alone and I started to doubt myself which I rarely do. Then I started reading. And holy shit. Sorry not sorry for the length of the post. It's important shit, and if it's 400 words over what people will typically read, well, if you can make it through a Stephen King novel, you can hopefully hang on long enough to make it through here.....
This isn't made up - it's a valid problem, as reported on by the NY Times, Harvard Health, and the Washington Post.
So what's happening? Well, unfortunately, if you aren't a white cis male and in pain, good luck:
Why? Why does this happen?
You can't ignore that white cis men have certain societal privileges, leftover from a thousand years of being the top dogs. I have nothing against white cis males - my problem is with the people that afford them the privilege at the expense of others. There's a historical connection that can't be ignored - for example, studies have shown in the case of women, doctors are much more likely to assume women’s pain is caused by emotional issues and/or hysterics rather than rooted in actual physical causes.
EVEN WHEN CLINICAL TESTS CLEARLY DEMONSTRATE THEIR PAIN IS REAL AND IDENTIFIABLE.
Not only that, but women with emergent or chronic pain are much more likely to be misdiagnosed as having a mental health issue and prescribed anti-anxiety or psychotropic drugs. I guess that's progress from the forced masturbation doctor's prescribed in the 1800s. Additionally, lady folk with biologically female issues in the ER and out of the ER, who complain of pain associated with fibroids or endometriosis are still often dismissed in high numbers as having pain “normal to being a woman.”
It boils down to doctors believing women are more emotional and irrational than men, and so over exaggerate their pain, if they are actually having pain at all.
This isn't anecdotal - Karen Calderone, for example, found doctors tend to treat men and women differently when they’re in pain, even when they exhibit the same symptoms. And they’re given sedatives instead of pain-managing drugs. Because the pain is in their head and will go away if they get their hysterical vaginas under control.
The internalized discrimination is immense in the medical community.
In 2016 nearly 50% of those medical students and residents surveyed believed at least one myth regarding race and pain – like believing black people had nerve endings that are less sensitive than whites. Uh, what? Like, what the what?
Doctor’s also erroneously believe that women and persons of color are more likely to become addicted to painkillers, because they’re more likely to abuse them.
And these are only a few examples.
If you’re attractive? Ha. Good luck to you. The ER is one place that shit will work against you. Why? Because is you’re pretty on the outside, it means you’re healthier on the inside and therefore you’re less likely to be treated for serious health issues.
Basically, unless you’re a white, heterosexual male, you’re kinda fucked. Older? Told the pain is part of aging and to suck it up. LGBTQ? Hysterical. Children? Whiney.
The list goes on.
So what kind of ramifications does this have? The answer is….a lot.
Medical research on women lags behind, and it's killing us - A study published in 2000 by The New England Journal of Medicine found that women were SEVEN TIMES more likely to be discharged from an ER in the MIDST OF HAVING A HEART ATTACK. Why? Because all the studies on heart attack symptoms are done on men and women have different symptoms.
What about abdominal pain? Head pain? Back pain? Pain is an indication that something is wrong. Get the pain under control and then figure that shit out. Don’t send us home. Don’t ignore us. Don’t patronize us. When you do, we live in pain and illness much longer than necessary. Sometimes, it's never treated.
Women and persons of color are also less likely to seek medical attention, out of fear of being dismissed or ignored. So the problem worsens. Or we just die.
I run a group for misfits - those that don't fit the stereotype of the "typical" outdoor person. Outdoors adventures. Sometimes we're going to get hurt. Sometimes we're going to have chronic problems and/or pain. We also deserve to be cared for, to be treated in a fair and equitable way. When you don't, you further limit our access. Stop it.
I posted what happened and I've now looked in to why it happened. Next up, what can be done? It's not enough to complain, I want to find solutions. What do YOU think people can do? What the solution is? Post below or contact me here.
I was in the parking lot after a hike last week, when I took a step and as my father would say, that was all she wrote. My lower back exploded in pain. I managed to drive home, took some pills, and settled in for what I assumed would be an uncomfortable evening. But the pain kept increasing, and at 1:00 a.m. woke my husband up to take me to the downtown ER at the Cleveland Clinic.
Going to the Cleveland Clinic Main Campus ER was a big, big mistake and ended up being a traumatic experience instead of a healing one.
They took me back quickly and a resident came shortly thereafter. His examination, moving everything everywhere, increased my pain intensely, but I'm sure it needed done in the manner he did it. He was confused because they'd put me down as having flank pain, not back pain. He asked a lot of questions about my hiking: Oh, you were hiking? First time out? You really hiked four miles? Are you sure you didn't fall? You hike how many miles a week? These were the gist, both then and when he came back later. It became clear he thought I was a fatty out for exercise above what I could do, probably the first time I'd been out in years, and had managed to hurt myself. I also got the feeling they thought I was drug seeking, based on the course of treatment that was yet to come and some of the off-hand comments that were made throughout.
They did not ask what medications I was currently on, nor if I had any allergies. Then a nurse showed up to give me some steroids and Tylenol. Which I am allergic to, which was noted in my chart (Cleveland Clinic has integrated systems, so they had my chart), AND I was wearing an allergy band. Even after my husband and I explained the allergy, the nurse STILL tried to get me to take it. Finally, he left and said he'd speak with the doctor. Thirty minutes later, he came back with a Lidocaine Patch and some heating pads.
I'd like to take a moment to mention I wasn't calmly sitting in a chair. I was crying, laying in a bed, and I'd explained over and over my pain was at a 6-7. I was REALLY in pain.
By 3:30 a.m. no one had come back and the pills I'd taken at 9:00 p.m. had worn off. The pain hit a level nine, and I was crying pretty hysterically and fairly incoherent. My husband kept going and trying to find someone. They couldn't find the Resident. There must have been a shift change, because a nurse helping another room heard me and came in. His name was Michael, and asked what was going on. He was pretty horrified and went to get help. He also brought a blanket and kept me pumped full of ginger ale. Michael was amazing.
Help came in the form of the attending, since no one could find my doctor. They then tried Valium - which is a muscle relaxer, but also treats anxiety. This was followed an hour later by one 5 mg hydrocodone. Followed another hour later by the ORIGINAL resident coming and saying they couldn't give me intravenous drugs, the next step, without admitting me. My pain had gone from a 9 to a 7, but I was still crying. He said to be prepared to do PT and do some work. I responded, again, telling him I'd been in PT for several years and did exercises every day, to which he answered, "Uh, ok." I responded along the lines of, "Whatever you have to do to actually get me some relief, please just do it. Seriously. I've had enough. The first doctor was here and disappeared for two hours, I just need help" I then felt the need to apologize - though I'm not sure why - it wasn't like I was yelling. You could see he was clearly pissed, and he just turned and walked out.
Michael came back a few minutes later to give me morphine, saying the doc was discharging me if I could walk after taking it. But then he discovered I didn't have an IV in, which apparently no one had noticed. One was put in, I got the morphine, and was discharged. The morphine brought the pain to a four, and they gave me scripts for a steroid, five hydrocodone, and more valium. No imaging was done, despite telling them over and over that the pain was different from my original injury and despite numbness in my leg, which I still have.
My self diagnosis is a new herniated disc. I needed help getting the pain under control, and I needed to know that was the issue (and the numbness would go away). They never followed up on the leg after the initial exam. My pain is better than what it was, but still significant.
I feel, frankly, traumatized. I've cried a lot. I was dismissed. I didn't know how to get them to believe me, to help me. I've had nightmares about having to go back, or running in to the doctor in another capacity.
I've worked for years to get to the point where my daily pain level is a 2. I've worked hard to take the least amount of medication possible, to start hiking again. I'm proud of what I accomplished.
I shudder to think if my husband hadn't been there, as I was in too much pain to advocate for myself.
I was dismissed and treated without respect by most of the staff (not Michael) at the Cleveland Clinic Main Campus ER. I felt small, judged, and unworthy.
Because I'm fat.
Because I'm a woman.
Because they assumed I was drug seeking.
I feel embarrassed and ashamed writing this, like I did something wrong. But I didn't. It was their incompetence and bias.
I've been doing a lot of reading on women, pain, and the ER, which I'll post in my next blog update. It's been eye opening.
Shame on you, Cleveland Clinic. Do better.
I'd like to note that the Cleveland Clinic is huge, and all my doctors are with them. This is a review of only one of their ERs/centers. My regular doctor, who is helping get everything back under control, is absolutely amazing. I can't rave about her enough.
Have you ever had a negative ER experience? Been dismissed or marginalized by the medical community because of your gender, skin color, size, etc? Comment below or email me here.
This is a follow-up to the post I did last week on Vitamin I(buprofen), cause pain and inflammation sucks. From sore backs to tension headaches, nothing puts you down harder or faster than uncontrolled pain. So how the heck do you deal with it when you can't- or don't want to - take NSAIDS? Unsurprisingly, there's a bunch of methods to deal with inflammation and pain, you just have to find what works for you! Below are some of the tricks I, personally, use.
Honorable Mentions for Area Specific Issues
This is just what I've come across that has worked for me. I'm not a doctor or medical provider, and I do recommend you speak with them before starting any kind of supplement or making any significant change. And don't be afraid to do your own research!
Most importantly, know there's nothing wrong with you. You haven't failed and you are deserving of whatever adventure you want to chase.
How do you deal with pain/inflammation without NSAIDS? Comment below or email me here!