Update: I’m Dead Inside (Literally)

Some of you may have noticed I haven’t written anything in quite a while. This past year has been one of the worst of my life. Even more has been added to the list of things I cannot do and so I have been going through the stages of grief as a result (but had an extended stay on the depression part.)

A New Diagnosis

By September 2017, my ankle had been really really hurting for the past 3 years, but my doctors kept writing it off. “It’s just EDS pain,” they insisted, writing me off again and again. Yes, EDS led to my ankles usually being sore but not nearly as painful so I knew something was wrong. After insisting it was different than EDS pain and asking for my rheumatologist to look into it for three years straight I finally had an X-ray.

That X-Ray led to an MRI and that MRI led to a surgeon. In August I was diagnosed with Avascular Necrosis (AVN) in my ankle. AVN is essentially when the bone dies because it doesn’t get enough oxygen from the blood. In some cases the bone fully collapses, my ankle being one of those lucky cases. I had been walking around on a collapsed bone in my ankle for THREE YEARS.

As if that wasn’t enough to deal with, I was diagnosed with AVN in seven other joints (so far.) I have AVN in one shoulder, both hips, both knees, both ankles, and in my toes. My ankle AVN was by far the most severe as my talus (bone in ankle) had already collapsed. However, collapse in my hips is inevitable and I will likely need a few more joint replacements.

So I finally had an answer to why my pain had gotten so much worse over the past couple years, but it definitely wasn’t an answer I wanted. AVN is incredibly rare and there aren’t many treatment options. Many are very new or even experimental. When bones are in the early stages there are surgical options to put off joint replacements, but when it is very advanced joint replacement is the only treatment. Unfortunately, the only proven treatment for AVN is surgery.

Surgery

So in November 2017, I had my ankle replaced and fused. In addition, a procedure was done on my hip that was supposed to put off collapse. I think that hip procedure failed as my hip is far worse off now, but the ankle replacement is going well.

I’ll write its own piece on my ankle replacement as well as hip surgery. The science behind it is amazing and there’s a lot to say. Even though my ankle is recovering well, I’ve been really struggling with the grief and isolation that comes with a major surgery like this.

Limitations & Coping

I can no longer point or flex my foot and never will be able to. It’s hard to not think of the list of things I can’t do; it feels like it’s getting longer by the day. I haven’t been able to dance in a couple years, but I always thought of it as a possibility. Now I’m not sure it is. I can’t drive and will have to relearn to eventually once I’m healed. Hiking also seems unlikely. I’m actually okay with the never being able to wear heels again part.

I’ve coped with my EDS and POTS, but this is a whole different story. AVN has the potential to spread anywhere. Every joint pain I have worries me that I have AVN in another joint. Sometimes I can feel or even hear my joints crumbling or bone grinding on bone. I feel like I’m dying on the inside and it’s one of the most unnerving conditions I’ve had. It’s beyond depressing to know your body is degenerating and feeling it happen doesn’t help.

I’ve also had trouble coping with isolation. I rarely leave my house for something other than a doctors appointment due to pain. I moved to a place without stairs and that has helped. I also plan to dedicate a whole article to chronic pain and isolation in the future.

So there’s my very quick update. So many other things have happened that I will be writing about more in the future. For example, getting more diagnoses, finally getting IV hydration, PICC lines, a CBD product review, and more. Thanks for sticking around during my writing slump!

8 Ways Alternative Medicine Hurts Those of Us With Chronic Illnesses

Since the moment I first got sick the suggestions people gave me were unreal. The suggestions began with “just needing to pray harder” and gradually made their way to biofeedback, grounding, crystals, supplements, and more. I honestly am not sure which was worse, but I do know that suggestions and trying alternative medicine have only made a hard life with chronic illness harder.

1. The Patient Gets Blamed When a Treatment Doesn’t Work

When a doctor gives me a medication and it doesn’t work I don’t get blamed for the failure. However, when I try an alternate medicine I nearly always do get blamed for the failure. When it was biofeedback, I wasn’t trying hard enough or practicing enough. When it was acupuncture, I wasn’t trying to relax hard enough. Even with supplements, I just hadn’t waited long enough for the benefits (no matter how long I waited).

It is hard enough to be blamed for a treatment not working when you are trying your best. It is even worse when this attitude gets perpetuated beyond your treatment and into the rest of your life. Sometimes when I tell people the conditions I have I get the response “Well are you trying _____” (Insert any alternative medical treatment). Sometimes it is implied and sometimes it is explicit but the underlying question is always there- why aren’t you trying everything you can? The reality is that people with chronic illnesses don’t owe it to anyone to try treatments not verified by science. The attitude that we aren’t trying hard enough when we don’t try whatever alternative treatment is hurting people. It has kept me from getting the support I need from my friends and family- I was never trying hard enough to get better so in their eyes I didn’t deserve their support.

2. Alternative Medicine Is Dangerous

There are many reasons using treatments only verified by science is so important. One reason is safety of a treatment is verified. The treatments benefits must outway the risks for it to go to market. However, alternative medicine doesn’t need to go through the same thorough screening. People with pre-existing conditions can be the most endangered by this lack of safety.

For example, supplements often aren’t what they say they are. This can cause medications interactions and other problems- especially in people who already aren’t healthy. Chiropracty and acupuncture have their own dangers too. Chiropracty has been linked to strokes and acupuncture to puncturing organs.

I often hear “But it is natural so it is safe” or “I don’t want to put all those drugs in my body- I prefer natural treatment.” What so many people fail to realize is that natural does not mean safe. So many natural things in this world are dangerous- berries, mushrooms, and poison ivy for start. The thing is so many of the medications on the market come from nature and have been improved upon so they are safer and more effective. One example is aspirin, which initially comes from willow bark. There are dangers from the completely natural willow bark and aspirin the same. The difference is aspirin has been tested and put into the safe, same dose in every bottle with dosing specifications included. The risks are assessed and addressed whereas natural products usually only claim they are natural and the public assumes that means safe and doesn’t question the risks of the treatment further.

3. Costs

Alternative medicine profits off people with chronic illnesses. I’m not going to try and argue that “big pharma” doesn’t profit off us being sick as well. However, when we pay for medication we are paying for something that has been proven to be effective at least some of the time. With good insurance, these treatments are likely to be at least partially covered. With alternative med people pay, and they pay big, for something that has not been proven to help with their condition- or any condition at all.

People with chronic illnesses already have to deal with crippling medical debt and are just desperate enough to try anything- any crazy alternative medicine no matter how small the chance there it has of actually helping them. People know this and they benefit off of it. They take advantage of the desperate.

4. It Assumes Laymen Know More Than Doctors

There is a reason we should only trust medical professionals to treat medical conditions. The human body is infinitely complex and so many things can go wrong. Doctors and pharmacists spend a large chunk of their lives in school learning how to treat patients better and minimize risks. But alternative medicine professionals? Anyone can become one. They don’t have to know much about the human body or even anything about the condition they claim they can help with.

5. Patients End up Constantly Chasing Hope All The Time

Having a hope certainly isn’t a bad thing. Having false hope in a treatment that will cost you hundreds, if not thousands, and let you down is a bad thing. A lot of people with incurable, chronic illnesses, if not all, go through a time similar to the bargaining stage of grief. They try anything- no matter how slim of a chance it has of working. Alternative medicine con men know this and they take advantage of it. They promise cures to our chronic conditions. They are in the business of selling false hope.

False hope hurts. Putting 50+ hours into biofeedback that claimed to cure (or hugely improve) my POTS and getting so little out of it. I was crushed by letting myself hope I could get better and then continuing to be sick no matter how hard I tried. The biofeedback technician blamed me; I blamed me. Even worse, my loved ones bought the false claims the biofeedback technician made. And when I wasn’t cured? They blamed me too. It was one of the darkest times of my life. The disappointment consumed me.

6. It Claims To Fix You, Not To Manage Symptoms

Trumped up claims of efficacy are a hallmark of alternative medicine. All the medications from a true doctor I took only claimed to possibly manage the symptoms of my conditions. However, alternative medicine practitioners claimed that they could cure my incurable illness or basically make all the symptoms disappear.

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My conditions are incurable. Cutting out gluten, doing biofeedback nonstop, becoming vegan, yoga, walking, crystals, needles, etc. is not going to make an incurable illness curable. If the cure was truly found actual scientists and medical professionals would be all over it. Alternative medicine conmen making these outlandish claims produces false hope, keeps people from learning to live with their conditions, and makes conditions harder to understand. That leads me to our next point.

7. Pseudo-experts Make Understanding Conditions Harder

Education on conditions is important to people being supportive. When alternative medicine conmen enter the conversation they dilute the available information with false claims rather than facts. This makes the condition more difficult to understand for the patient, medical professionals, and loved ones. Pseudoscience, therefore, makes the lives of patients much more difficult.

For example, I have had doctors tell me that my conditions would be cured by cutting out inflammatory foods. This diet has no evidence to back it up but somehow made it into my doctor’s education on my conditions. Getting suggestions that indicate a fundamental misunderstanding of my condition (that it is incurable) is frustrating and disheartening.

For other examples, you only have to look as far as support groups. There is so much pseudoscience and misinformation that many patients don’t even understand the basics of their condition.

8. Alternative Medicine Simply Does Not Work

There have been many studies into alternative medicine and the results are conclusive- alternative medicine simply does not work. There is a common joke in the science community: What do you call alternative medicine that works? Real medicine.

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So before you consider the next random treatment suggested to you- check it out first. Is there any good evidence that it helps people with your condition? Is it worth the money, the false hope, the risk, or the blame you will likely receive when it fails?

Defining Yourself By Your Disability and Seeing Yourself As Sick

Defining Yourself As Your Disability

 This article makes a really good point I have  been thinking of lately. People should not demand someone with a disability to look at themselves in whatever way you see fit. Don’t complain that they talk about their illness too much. My disability does not define me, but it has shaped who I am. I have to deal with it every single day; it is a part of my life and I will talk about it if I want to.

Firstly, telling people to not “define themselves by their disability” is insulting because it implies that is how they do define themselves. For me and for most people this isn’t true.

Secondly, telling someone to not define themselves by their disability or to talk about their disability less is just ignorant. The people you see every day, the job you go to every single day- those things shape who you are. So who are you to say that a something I deal with every minute of every day should not influence my life or how I see myself?  When you hate your job you are probably going to talk about it a lot. In no way does that mean you are defined by that feeling, your crappy job, or how you deal with it. Talking about something that affects you so profoundly absolutely does not mean you are “defined” by it.

Seeing Yourself As Sick

While at the Dysautonomia International Conference a Dr. Paola Sandroni, a neurologist and expert in POTS, claimed that IV fluids should not be given to patients because it makes them think of themselves as sick*. Well, my question to Dr. Sandroni: how is wanting IV fluids to feel less sick going to make me suddenly see myself as more sick?! IV fluids make me feel less sick and more normal. Do you want to know what does make me think of myself as sick? Fainting. Pain. Brain fog. Dizziness. Nausea. Severe tachycardia. Vomiting. Chest pain. Our symptoms make us feel sick and think of ourselves as sick; treatments make us feel better and more normal. Stop demonizing our attempts to feel better.

I have also heard “friends,” family, and medical professionals go even as far as saying that you would feel better if you didn’t focus so much on being sick. Just stop talking about it and it will go away. In some cases, I am sure this is true, especially with patients who have both anxiety and POTS. Most of us do not. Just as many others, I don’t see myself as weak and sick. That is not why I talk about my illness. In fact, I see myself as strong, and a fighter for what I go through every day and keep on going. I recognize how hard it was to ask my friends and family for support. I recognize that I am doing everything I can to raise awareness to hopefully limit both the suffering of others and myself. If I need support to deal with this really tough thing then you can bet I will talk about it, and I’m stronger for that fact. You can’t silence me by demonizing the way I get support and deal with my illness.

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*All the other doctors at the Dysautonomia International Conference were wonderful and much more understanding of patient’s struggles. This was just one negative experience of an overall wonderful weekend.

Do No Harm: A Ranking of the Harmful Things Medical Professionals Have Put Me Through (Part 1 #13-8)

The medical profession is supposed to be about helping people. I have been lucky enough to have some wonderful, caring, and compassionate health care professionals. I have also had some absolutely horrific experiences healthcare professionals. Dealing with doctors and nurses who don’t understand and make my life more difficult has been one of the hardest parts of having a chronic illness for me.

These professionals go to school for years and we are told to trust their medical expertise. Blindly following advice from a bad doctor can get patients killed- so should we blindly and always follow their guidelines? Many of us with chronic illnesses have been through the experiences I describe below so it is no surprise that some of us have anxieties about going to the doctor and don’t always trust those in the medical profession.

We turn to these professionals in a time of great need and commonly aren’t even treated as human beings. Unfortunately, I know I’m absolutely not alone. Stories of terrible and harmful doctors and nurses fill my support groups on a daily basis. So here it is- a list from least harmful to most harmful (in my personal opinion) of what medical professionals have put me through in the past six years:

13. Letting Their Ego and Arrogance Get in the Way
We have all heard of them, doctors who think they are god’s gift to the earth. They went to medical school or nursing school and now know everything and are never wrong. There is no way a patient could help them understand their condition or offer any input into their personal care. After all, this information is coming from a lowly patient.

kanye8When these arrogant doctors can’t easily find a diagnosis suddenly the patient is the problem. They will tell us we need to be more positive, try harder, and better comply with treatment (even if we already are).

“Have you tried like… not being sick?”

Other egotistical doctors will tell patients that they are are faking it for attention, that it a psych issue, or that their patient’s pain tolerance is just too low (see #10). These doctors are on the patient’s side until they can’t figure something out; then they turn into villains in their patient’s medical care.

In Helpful Medical Professionals:
One thing I look for in doctors is the ability to say “I don’t know.” Some of my conditions aren’t understood well so I don’t expect my doctors to know everything about everything to do with my condition. Admitting they don’t know the answer to something means they are more willing to ask a colleague or do some research.

12. Refusing to Research My Condition
I understand that working in the medical field is difficult and busy. However, if a patient seeks medical help and the medical professional hasn’t heard of their patient’s condition or only vaguely remember things from school decades ago it is essential to take the time to research their condition. Different conditions can change how medications work and need special considerations. If someone doesn’t know about a condition, does nothing to find out, and decides to treat their patient anyway they are putting their patient in danger and not giving them the best care.
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 In Helpful Medical Professionals:
Medical professionals who are willing to research conditions they aren’t experts in are definitely keepers. These professionals actually care and it makes a world of difference in our care. If they get stumped they may ask a specialist for help, but they won’t dump their complicated patients.

11. Deciding You’re “Someone Else’s Problem”
It is common for complicated cases to be passed on from doctor to doctor. That is why some POTS patients have to see over 36 doctors to get an accurate diagnosis. Doctors commonly dump “difficult” patients with ridiculous excuses. I even had a doctor yell at me and tell me to go elsewhere. I had just moved and simply needed a doctor to prescribe antibiotics for strep throat. He did so and told me to work on finding a more experienced doctor because he didn’t think he could help me. Fair enough.

I chose this doctor so I could get in quickly while looking for a more experienced doctor (which can take months to years). He was good enough for what I needed in the short term. A week later I developed pleurisy. For whatever reason, this tends to immediately happen to me after colds, the flu, strep, and most viruses. All I needed was a steroid shot- I’ve been down this road many times.

The doctor absolutely chewed me out for coming back to him. I was too complicated and he wouldn’t treat me. When I explained I had an appointment with a much better doctor than him the next week and just needed help until then he realized what a jerk he was being. Needless to say, I did not go back to him.

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One doctor who I thought really wanted to help suddenly made an 180 after I had been seeing her for months. In the beginning, she was so excited to help me and try everything she could. In the end, she decided to suddenly drop me. She later became an oncologist which seems like a terrible choice for someone so lacking in empathy.

Recently I had a pain management doctor tell me “they don’t manage chronic pain.” That’s the exactly the purpose of the clinic. When my case became complicated they just gave up and didn’t even care enough to come up with a reasonable excuse.

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 In Helpful Medical Professionals:
Medical professionals who stick with complicated cases are hard to find. If you do find them, keep them around! Unfortunately, it is hard to tell if your new doctor, physician assistant, or nurse will actually stick around and not write you off further down the line.

10. Calling Your Pain Tolerance Low
Medical professionals commonly write off their patient’s pain as exaggerated or made up. In response to pain complaints, these professionals insist their patient simply has a low pain tolerance.

This happened when I had my wisdom teeth taken out. My recovery was absolutely dreadful and lasted weeks longer than it should have. I actually had to withdraw from school because I was so sick between dealing with my wisdom teeth and my concussion I had at the time. I woke up in the middle of the procedure moaning in pain- even with anesthesia. I am absolutely positive the oral surgeon hit a nerve during the procedure, but instead of admitting to her mistake the doctor told me I must have a low pain tolerance.

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I was also told my pain tolerance was low when I had my pulmonary embolism (a blood clot in the lung) too.

“You just have the stomach flu and a low pain tolerance.”

I’ve had multiple doctors tell me I couldn’t have kidney stones because I wasn’t outwardly displaying my pain. They insisted that something less severe was going on and I was overreacting to pain by coming to the doctor.

“I’ve seen grown men screaming on the floor in the fetal position. You can’t be in that much pain.”

1 (3)They were obviously proven wrong. Of course, I received no apology. Patients with chronic pain get outstandingly good at pretending to not be in pain and putting on a brave face. For example, as long as I am under a 7/10 on the pain scale, unless you know me really well, you will never just how much pain I’m in (unless I tell you). Pain looks different in every person. This attitude is just ignorant.

 In Helpful Medical Professionals:
Medical professionals who actually believe their patients are hard to find. It is pretty easy to figure out early on if they are going to support you and believe you or dismiss your pain early on. Doctors who understand that severe pain doesn’t always mean laying in a fetal position screaming are the best doctors.

9. Believing You Are Just Not Trying Hard Enough
The first line of approach to treating POTS involves lifestyle changes. You can read more about them here. The lifestyle changes are not fun by any means but compared to my symptoms these changes were worth a try. For a while, I complied with every single suggestion. I was the perfect patient. When I didn’t improve dramatically, I started to get blamed for my symptoms not improving because I wasn’t trying hard enough. Often lifestyle changes alone aren’t enough to help manage a condition. I have since figured out what changes actually are beneficial to me and my doctors respect that. When a medical professional blames their patient for not getting better it is time for them to get the boot (assuming the patient is honest with their doctor).

tumblr_inline_npt6s4jAb81s0vf4f_500Most of us who are chronically ill desperately want to feel better. We will try nearly anything that may work to improve our condition. So a doctor blowing their patient off because the patient doesn’t get all better from what they suggest is absurd. Some patients are exceptions, but it isn’t acceptable to immediately jump to blaming a patient for treatment that doesn’t work for them.

In Helpful Medical Professionals:
I work out 5-6 times a week in an attempt to help my symptoms. Exercise is incredibly hard every single day. It is easily the hardest lifestyle modification to comply with. Pushing through severe pain, exercise intolerance, dizziness, and extreme tachycardia is a battle every single time I exercise. Having doctors who acknowledge the hard work I am putting into my health, whether through working out or otherwise, is incredibly refreshing. The best medical health professionals acknowledge the hard work their patients put in ( assuming they are making changes), not chastise them for not trying hard enough. One example of an awesome, supportive doctor acknowledging their patient’s hard work can be found within this lovely article.

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8. Not Following HIPPA
All my illness began when I was 17 so for a while my parents were involved in my care and medical decisions. By the time I had turned 18, I was the expert in the family on my body and my conditions. My parents did research but know a lot less about my condition than I did. So when at 19 years old a medical professional called my mother to relay incredibly sensitive information (a test testing for cancer) I was livid. My mom called me right away to tell me the news, but playing telephone with sensitive information is unacceptable!

While this has been the most blatant example of my privacy being disrespected I have had other times in which my privacy has been violated. For example, lab technicians have taken pictures of abnormal and interesting test results that had my personal information on them and I watch them share the results with their friends. Unfortunately, not all medical professionals take privacy seriously.
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 In Helpful Medical Professionals:
This one is simple- find doctors who respect patient privacy. We all have a right to have doctors who share medical information with only the people the we choose; it doesn’t matter if they are family. Life and death cases, in which the patient is unable to make their own medical decisions, are obviously an exception. In general, if a medical professional violates patient privacy, they need to be immediately reported to the medical board.

These are pretty terrible things to happen, especially from a profession dedicated to doing no harm. And it gets much worse! Watch for part two where I discuss the top seven harmful things I have witnessed from the medical profession.

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