Help me. It's my body. Why won't you listen?
It's shocking with the amount of technology at our fingertips today and access to information that our access to health care remains out of reach in this country. When someone is in pain and needs immediate care, there's no way to get it. Unless you're having a heart attack or stroke, the emergency room is useless. Urgent care is only good for minor illness such as the cold or flu. No where does immediate care exist for conditions that put your life on full stop like when you can't walk and are in excruciating pain. These are conditions that should warrant immediate and quality care and the longer they're left untreated the greater risk for further harm or irreversible damage.
As an athlete, I've experienced this first hand. In January 2014, I suffered a calcaneus stress fracture in my right foot. The injury was immediate and over a weekend. I was unable to walk when it happened and in gut wrenching pain. I went to the ER where I was given a boot and told to follow-up with an orthopedic which I was unable to see until 6 days post injury. Meanwhile I was left in pain, my life on hold while I waited for care.
After recovering from the stress fracture, I endured pain in my right calf for months where a knot of tightness exists to this day. My podiatrist sent me to a specialist for compartment syndrome. The specialist ordered an MRI of my feet and calves. The MRI confirmed the stress fracture as well as identified a small stress fracture in my big toe that I was unaware of. The specialist referred me to his colleague a foot doctor to review the MRI results because my own podiatrist couldn't read the scans in his system. It's a big problem when doctors don't have the technology to serve their patients forcing their patients to see a new medical professional who is not familiar with their history.
The new foot doctor examined me and told me I was healed, which I already knew. But he had no clue what was causing my calf pain. Finally I saw a chiropractor who suggested my pelvis had been tilted from wearing an air cast for many months. After one adjustment and acupuncture, the pain in my calf disappeared. Scary an MD couldn't figure that out.
Two months later, the ankle of the same foot began to hurt and swell badly. I returned to the new foot doctor because he was had access to the MRI. He examined me and was stumped about the pain. I told him about my back at which he theorized my ankle pain was a pinched nerve. Wow. Did you even try to use your brain? He scheduled me to see a nerve specialist, but I couldn't get in for 2 months.
The following week the pain was excruciating. It was so bad I sat in my car at work and cried every day. The pain to walk into the office from the car was too much to bear. I couldn't walk and going to work was nearly impossible. I returned to the new foot doctor crying in his office, begging for him to do a CT scan, another MRI, something to identify the cause of the pain. He told me "it was unnecessary and the insurance wouldn't pay for it either." I told him I had new insurance because I just switched companies. He told me I had no injury to warrant it and suggested I have blood work done to test for arthritis. I pleaded with him to help me explaining I couldn't walk and was in awful pain. He said "I can't help you." He left me in the room. He left me in tears. He left me in pain and as I limped and sobbed out of the office, none of the health care professionals in the office bothered to notice.
A few days later, his nurse called stating my sedimentation rate was high and that she would forward me my results to follow-up with my primary care physician. Further she stated they were canceling the nerve specialist test. When I received her email, she had mis-read my results. All my results were within range. I responded to the email to confirm my interpretations, but never received a response. I was left with no answers, no follow-ups and in so much pain. How do you leave a patient in limbo with no answers or resolve?
For two weeks, I worked from home. I was in too much pain to go to the office. After this time, the pain went away. The swelling never fully went away, but I was able to walk and live my life somewhat normally again. The swelling became severe in the afternoon and at night. It haunted me. I was desperate. I saw my original foot doctor. He told me it was a sprain and it would need to be scoped, but something told me that wasn't right.
That's when I scheduled an appointment with Mayo Clinic for another opinion. When I saw the MC orthopedic, my symptoms were mild. The swelling was there, which I explained had been there 8 wks already. He told me it would eventually go away and that I needed physical therapy to strengthen my injured leg. He scheduled me with Mayo PT and told me I was fine.
2 weeks later, the swelling returned on a Friday. It was horrendous. I knew something was really wrong. I called Mayo. My orthopedic's colleague returned my call telling me I had complex regional pain syndrome. A rare condition that occurs after injury and that he would speak to my physician on Monday. I told him I was in severe pain to which he advised me to go to the ER. I responded "do you know what the ER does with orthopedic cases? They do not help them. They tell you to see an orthopedic." But he told me that was all they could do.
That Sunday morning when I woke up I couldn't walk. I was in tear jerking pain. I can't even begin to explain how awful it felt. I went to urgent care. The woman who examined me asked "what would you like for me to do?" Apparently we're not only the patient now but the medical professional as well. She gave me steroids for the swelling and released me. They didn't even bother to x-ray it. Urgent care did nothing except cost oodles of money.
The next day I called Mayo 5 times before speaking to the PA. She told me they think it is CRPS, the rare disease. Of course you do because someone else gave you the idea not because you solutioned it on your own. I argued I didn't believe that. After reviewing my symptoms, she advised me to go to the ER for a blood clot test. She insisted even though I knew that wasn't it.
So I went to Mayo ER where I was put on a stretcher in the hall because no rooms were available. I was left there alone for hours. The pain was immense and they gave me nothing to help, not that I was there for pain meds. I wanted answers. I sobbed on the stretcher, alone and scared. When a nurse walked by, I asked her if they forgot about me. I lost it. I sobbed harder, repeating out loud "why won't anyone help me? Why do the doctors keep forgetting me? I need help. Help me. Please help me! Someone help me!"
Finally the ER doctor came and ordered the test. The test returned negative and the nurse released me. The ER doctor never returned to give me the results or follow-ups. I asked the nurse how they could release me in so much pain and unable to walk without explanation. I pleaded with her to do something. She explained the ER doesn't deal with this "kind of stuff."
I sobbed on the drive home. I felt crazy. Like I was imagining the pain and swelling. I knew something was terribly wrong with my ankle, but no one would listen. No one cared. No one would help.
That night I couldn't sleep. At 2am, I drove back to Mayo ER. I was desperate, in pain and needed answers. I was the only patient and had all the staff's attention. ER doctor #2 ordered an x-ray and blood work. He initially told me he felt it was septic arthritis and suggested a rheumatologist. After I returned from x-ray, he stated he reviewed my orthopedic's notes (at Mayo any doctor has access to your files in the system which is why I went there). He said he thought I had the rare disease CRPS and to follow up with a pain management doctor like my orthopedic advised. The ER doctor took the easy way out. Last I checked, you fail when you cheat. You failed ER doctor.
I went home. Exhausted. Defeated. Emotionally Wrecked.
Hours later Mayo ER called. The radiologist compared my x-ray to one of my previous scans and identified an ankle stress fracture. I called my orthopedic at Mayo. The orthopedic didn't see it on the scan until he had the radiologist point it out to him. He agreed with & confirmed the prognosis. I knew this was the right diagnosis. I finally had my answer. Thank goodness for that radiologist.
But why did it take months to get a diagnosis? Months of suffering and pain. Months of lost quality of life. Months of lost health & risking further injury. Months of an emotional roller coaster questioning my sanity. Months of worrying I'd be this way the rest of my life.
Why did it take so long for someone to listen to me? I'm the patient. I'm an athlete. I know my body. Not you. Listen to me. Why didn't you doctors listen?
Why don't doctors think anymore? Cheating isn't the way to diagnose patients. Ignoring isn't either. Medical schools costs a fortune yet problems aren't solved.
I'm appalled by every medical professional involved in my case and how they mis-treated me. I'm appalled that no one cares about the well being of the patient. I'm appalled by the lack of access to care when it's critically needed. I'm appalled by doctors who refuse care. I'm appalled by doctors who don't try. I'm appalled.
Navigating the health care system is impossible and finding a doctor who cares about your well being no longer exists. When you suffer an illness or injury, doctors pass you around like a Thanksgiving turkey. Doctor to doctor. With no follow through. I'm not a turkey. I'm a patient. I'm a person.
Meanwhile the patient suffers. Their life is put on hold. The physical pain leaving them emotionally wrecked and depressed. The hardest part is the lost time in getting a diagnosis which can result in the patient getting worst, further injuring themselves or not getting treatment soon enough enduring irreversible long-term effects from not receiving immediate care.
I'm ashamed to be a citizen of a free country where access to health care is suffocated and the quality of care is that of a 3rd world country. Health care should be about getting timely and quality care. So what I wanna know is...
What do you think?
Linking up today with Amanada @ Running with Spoons for Thinking Out Loud
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larissa says
Unfortunately, this type of thing happens far too often. It is beyond frustrating knowing there is something off and wrong with your body and there is no one to help you, what is worse is when the people who have a duty to help, are often those that do not listen and choose to write people off as if their opinion were the only one that matters. Sorry this happened to you, it sounds terrible. THanks so much for sharing, it is nice to know that other people notice the really awful parts of the health care system.
Megan says
I don't think the average person understands how bad it is. It's isn't until you're sick and suffering, desperate for answers that you realize health professionals do not care. They say it's too hard or that they're trapped by insurance. I would like to understand how exactly insurance prevents you from researching a problem? Organic chemistry and the m-cat aren't hard, but figuring out what's wrong with a patient is? Personally, I think doctors have just gotten lazy. It's just mind boggling.
Moniquem says
These healthcare professionals are lazy. I was seen for a calcaneus fracture and my podiatrist only ordered X-rays of my heel. Months later we took an X-ray from another view where the doctor finally caught another injury in my foot. If you have a calcaneus fracture make sure to get your entire foot, toes, and legs xrayed. Take your X-rays and continuously make them look at it over and over again.
Megan says
So sorry to hear you went through this. Healthcare has become all about insurance and billing and left no room for the patient. It's an awful process for anyone who is injured or ill.
kristine says
Hi Meghan, wow, what a story. I'm dropping you a quick a note to say I and some good friends of mine have experienced trouble with the medical community as well. I live in Phoenix also and have found an excellent physician who is THOROUGH and takes unbelievable amounts of time talking to you and figuring out with you your diagnosis. He's actually an oncologist, but also a type of general practitioner as well, I have FMS/CFS/EBV, and he spent 2 1/2 hours with my first visit with him then a battery of tests to determine the correct diagnosis. If you ever need a physician like this, drop me an email (found at my site) and I'll give you his name and number. Good luck! 🙂
Megan says
Thanks for your note Kristine! Actually since I wrote this, I found an excellent naturopath who was able to diagnose me, but if I ever need a traditional doctor I know who to come to!
Lisa @ Running Out Of Wine says
I am so sorry you had to go through all of that! It can be so frustrating when the people who are supposed to take care of us fail to do so. I haven't had very good experiences with urgent care either, but nothing like what you endured. I broke my finger last year and when I went in they told me it was a sprain. The next day they called and said I had to come back because the radiologist found a fracture. I had a gut feeling it was a fracture all along but they insisted it was a sprain the first time and then made me come back and pay another copay.
I hope that you can find a doctor or specialist who you can trust and who continuously tries to help you1
Megan says
Thanks, Lisa! I think the specialists I'm seeing at Mayo are getting closer but it's been a long road. It's unfortunate doctors don't listen more to their patients especially when they're athletes. Hope your nagging injury heals soon!
Christina @ The Beautiful Balance says
Megan that is awful! I told you that I severely sprained my ankle doing box jumps and was just given an air cast and crutches and then an ankle brace. Later on I had someone look at my X-rays and I ended up having a fracture in my ankle. They told me it was too late to do anything and that the doctor should've put me in a hard cast immediately. Till this day (this happened in July) my ankle is deformed, swells randomly and stays swollen, and aches like no other. So happy to hear you found a solution. This makes me want t go for a third opinion now!
Megan says
None of the 3 doctors I saw figured it out. It was a radiologist that saw it only after I went twice to the ER in the same day and demanded an x-ray because no one would do one. I can't believe you fractured your ankle and they didn't know that. How did they miss that in the x-ray? I'm so sorry to hear you're still living with side effects of that mistake. Unfortunately I feel like it happens to a lot of people. Doctors can walk away easily and people are left to deal with pain & suffering the rest of their lives. It's not right. Getting another opinion is never a bad idea in my opinion.
Yaara Leve says
I'm so sorry you went through this misery! At least you have answers now and can finally work hard on healing. How is your ankle/foot feeling now? I'm actually injured myself and it's freaking annoying as hell! Around Thanksgiving I strained the tendon that stretches from my inner ankle to the calf and extends to the achilles and heel--it's called the posterior tibialis. I was just doing the elliptical over and over again on high resistance and didn't alternate with other things like swimming--so it's definitely an overuse injury. I"m stubborn and when I find something I enjoy I keep doing it. I like swimming--but I enjoy the elliptical because I can listen to music; it's more convenient etc.. Anyway--the pain hasn't subsided and it hurts to walk badly. This week I've just been taking it easy and doing a little swimming. I have an MRI appointment next week and I'm praying the tendon is not torn. Have you every strained something like this? How long did it take for you to heal? I wish these injuries would just STOP happening to us! It's freaking annoying because I look at other bloggers and other people on instagram and they run every freaking day or do the elliptical everyday with no injuries. It's just not fair! I curse every time I was just lazy and didn't feel like going to the gym.
I also have to get my hormones checked out. My period has been nonexistent for years now--it's not a weight issue with me--it's strictly hormonal. Even when I was severely overweight I didn't get my period--it's just a weird hormone thing. I think balancing that out would help preserve bones;joints etc..
Anyway--sorry this turned into my own personal rant--but just know you're not alone and if you ever want to talk/vent/etc.. I"m always here for you.
XOXO
Sending you healing vibes!
PS: Oh and we should totally share swim workouts! I'm always looking to shake things up.
Krista says
Sorry to hear about the pain and dealing with a frustrating healthcare system first hand! I work in healthcare and see the gaps in the system, daily. More alarming is why a young gal like you continues to get stress fractures. I hope you're looking into that issue! Best wishes!
Megan says
I saw an endocrinologist this week. It's a hormone issue. I have no estrogen. I did see an endocrinologist 6 months ago & he told me having no estrogen wasn't an issue unless I was trying to get pregnant. Now I know he was wrong. Once again, terrible system, terrible doctors.
Megan says
Sorry I missed responding to this. It's been busy getting back to work after the holidays & all my doctor appointments have been crazy too. My ankle is much better since I've been doing lower intensity workouts & resting more. My focus has been weight & body weight training to strengthen imbalances & build my bones. I've been doing 10 minutes on the spin bike with circuits in between 3x about twice a week. The other days I swim laps (nothing fancy) and lift upper body. It's been very effective for me. Thankfully I am feeling a lot better, but I still have to be careful even once I'm out of the boot. I'm sorry to hear you're injured again. Recommend you take it easy. I know that's hard, but sometimes you have to ask yourself if you're doing more damage or good to your body. That was not something easy for me to come to terms with. This last injury made me realize my body just needed a timeout. Surprisingly with lower intensity workouts I feel stronger than ever and getting a lot of compliments too. You may surprise yourself. Take it easy & keep me posted on the MRI. 🙂
Kaylin @ Enticing Healthy Eating says
I can understand and sympathize with you. Many years ago, just after i was born, my father had a major surgery done on his leg to try and fix some extreme pain he was having with his nerve problems. The doctors stupidly cut the wrong nerve--the one that was actually working properly--so now he just has to deal with the pain every day and has ever since I was a baby. They cannot cut the nerve causing him pain now because then he would not have use of the leg. Way to go medical system...But yes, I do hope your situation turns out much better!
Megan says
That is an incredible story Kaylin about your Dad. I can't imagine the suffering & frustration he has had to endure. It's very sad we can't rely on our HC system and doctors to take care of our needs. All the best to you & your Dad.
lindsay says
this makes me angry and sad. I am sorry friend and i feel ya! i wish it wasn't this way. VENT anytime!
Megan says
Thanks, Lindsay. I almost gave up on myself. I'm glad I didn't.
Megan @shelikesitfresh says
What a horribly painful and frustrating experience. Healthcare is so disjointed these days, with so many specialties that it is so easy to get bounced around from MD to MD without any answers. So sorry you went through this.
Megan says
Thank you! I'm just glad I didn't give up on myself and kept trying to get answers before it fractured completely. I just knew in my gut something else was going on. There were certainly days I felt like giving up. No one should have to go through that.
Laura @ Sprint 2 the Table says
That is unreal! I went through a horrific 2 year experience with my mother that was caused by a doctor's negligence. It's unreal how much they get away with! So glad you finally ave your answer.
Megan says
2 years is a long time! I can't even imagine. It's sad that this happens to many people every day.
Michele @ paleorunningmomma says
So sorry you went through all that! Agree that there need to be changes, that should not have to happen to anyone, and sadly these things happen all the time.
Megan says
It shouldn't happen to anyone & I can't imagine how I would have felt or done if my ankle had fractured and none of the doctors did anything. You really have to question everything with doctors.
Kirtley @ The Gist of Fit says
Oh that makes me sick. How much do you think Obamacare has to do with this? Our medical system is in biig trouble and needs to see some serious changes soon.
I'm so sorry about the mess you're in, wish I could help somehow!
Megan says
I believe it's about insurance and the bureaucracy that comes with that. Instead of caring about the well being of people, it's all about big business and who makes money. It overdue for an overhaul & I doubt Obamacare will address that.
Lauren @ The Bikini Experiment says
Sadly I so agree with your view. The healthcare system is an utter mess. Everything is a run around and costs a fortune. I'm sorry you have been through such a hard time. Glad you are starting to heal and reading this post reminded me how we all have to be our own advocate when it comes to healthcare. We really have no choice.
Megan says
You really do have to be your own advocate & never give up. When you do get an answer & don't feel right about it, you have to keep trying. There were so many times I almost gave up.
CJ Johnson says
OMG, this blog needs to be in a national magazine and talk show. I falling into the same kind of situation. My health insurance is via a small to mid size system and no teaching hospital on the plan. Although I was taken to the trauma center after falling from my horse no CT or MRI were taken of ankle. Just basic ex-rays. They did do a lot of extensive blood work which had nothing to do with my ankle. They put me in a temp cast with a referral to an orthopedic doc in a few days. He ripped my cast off, said this is over kill, made me try and stand up and I fainted from pain. And yes even the x-ray shows I have a broken fibula. There may be more damage but apparently my health system operates on a system of if we don't look for the entire picture we don't have to treat it. Meanwhile told surgery can't fix it we just need to wait and see. Many hours of google research later I find that people with similar fracture and no surgery end up with chronic pain. Of course think about it, would you go back to your original doctor to report this? No, you would find a new one so these doctors have no clue on the outcome long term. Oh, and yes it can be fixed but only at a major teaching hospital where they have state of the art equipment. Yep, it called hold chip togetherwith a tiny pin instead of a large screw. Duh......... And like you, my first visit to the ortho they put me in a room with NO computer to read x-rays. They were not even going to go over it with me or take new one. I ride equestrian and my ankle is critical in riding. No one cares in the health field unless you are well connected. Finally my parents friend who is well connected put my case in front of a teaching hospital Director ( in a large city) and they are reviewing my case. This care is only because of connections. It would never happen otherwise. Everyone deserves to be "connected". We have to write medical directors at hospitals and insurance companies write the newspaper as it is shameful the care today. And don't get e started on the medical supply stores. These are the most depressing places with the fugly ugly options for mobility and care. I saw seniors being ignored, no compassion to help. And all the cool hip mobility stuff on the internet-not in the stores....