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!

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The Diagnosis Dilemma

POTS affects between 500,000 and 1,000,00 in the USA alone, according to Dysautonomia International, but isn’t very well known in the medical community. It is more common than Parkinson’s and Multiple Sclerosis- so why has no one heard of it? Some of this is due to that POTS was just recently given the name POTS in 1993. Lack of research and understanding is the largest problem. Research is finally starting to be done, but a lot more needs to happen. Often Veterinarian students will learn about Dysautonomia and medical students hardly gloss over it. A lot of POTS patients many different doctors before they diagnosed. Throughout this process we begin to lose support from your loved ones, support from the medical community, and are told our symptoms are all in my head.

My Experience

My personal experience with getting diagnosed with POTS was an incredibly lucky one. While working as a receptionist at a hotel I fainted after I had been standing for a few hours. They took me to the hospital to make sure I didn’t have another Pulmonary Embolism and (of course) didn’t figure out what the cause was. They sent me home with a referral for a cardiologist. The cardiologist was useless but did do one great thing: he sent me for a tilt table test.

My first tilt table test was ridiculous. When I told them I was going to faint they ignored me. My heart rate went from up over 60 beats per minute and I passed out. Afterwards, I asked them what that meant and they told me it was normal.

After waking up from fainting at the sight of my wife giving birth, MRW the doctors stare at me - Imgur

If I had listened to my cardiologist and the technician it would have taken much longer to get a diagnosis. Not everyone faints from POTS, but it was lucky I did because I was able to figure out what I had as a result. I googled “fainting after standing” as one of the hundreds of things I looked into. Between that and looking up “increase in heart rate upon standing” I was able to find that I had POTS. I found a new cardiologist, who wasn’t much better, who was able to definitively diagnose me with POTS. My hyperPOTS diagnosis took a bit longer, but that was a few years later at Mayo Clinic.

I did have trouble with getting diagnosed with my gallbladder problems and Pseudotumor cerebri getting diagnosed. Any rare or complicated condition has the potential for diagnosis these problems.

Just How Long Are We Talking?

To best understand what POTS patients go through in obtaining diagnosis we must look at the length of time and the number of doctors seen before diagnosis. Most POTS patients see 3-5 doctors, but there a few who have had to see 36 or more! That is about a day and a half of doctor’s appointments total; which means a day and a half of doctors telling you nothing is wrong and it is in your head. The amount of money for 36 doctors and a lot of testings is incredibly expensive! It is also emotionally draining.

numberofdocs

Source: Data from the patient survey on POTS this wonderful website it doing here.

As for how many years it takes to get diagnosed, for the vast majority of POTS patients it takes over five years! For some patients, it takes as long as 20 years. Twenty years of medical tests, doctors visits, and feeling terrible with no answers.

Untitled2

Based on a Facebook poll of 76 POTS patients.

The Emotional Toll

Often when we first get sick people are very understanding and supportive. They want to help and there is a lot of sympathy. However, after months with no answers that sympathy and understanding goes away. Parents demand you clean and do chores, after all doctors found nothing wrong with you. Friends get upset when you have to cancel due to your symptoms. People stop asking how you are and that support turns quickly into judgement. It is one of the most alienating things I have ever been through.

If your loved ones not being supportive isn’t enough, the medical community begins to “shun” you. Doctors are terrible at saying “I don’t know”. Instead, they blame the patient and insist it is all in their heads. Here is a notable list of things doctors may say:

1. “It is just anxiety” Or insist it is depression, hypochondria, or another mental health condition.

2. “You are doing this yourself.” They assume it is Munchhausen’s or Munchhausen’s by proxy.

3. “You need to stop doing drugs.”

4. “You are making things up to get drugs.”

5. “You just need more exercise.” Or they tell you to be more active, go back to work, get out more.

6. “You are making up all this to get attention.” Oh ya, I love how much attention I get for POTS.Most of it is negative! I hate being that sick girl- who would want this?

7. “That is normal.” Fainting is normal? POTS symptoms aren’t normal and are a huge threat to the quality of life!

MRW i am about to fart but it really is a shart and i stop it just in time - Imgur

Feeling terrible and hearing these things is incredibly draining. After hearing it is all in your head you begin to wonder if they are telling the truth. Friends and faily may even agree with the doctors and begin to say hurtful things when all you need is their support.

How Do We Fix This?

Advocate and Educate! It can be incredibly frustrating to have to educate a doctor, but it is the only way things are going to get better. The more doctors know about POTS, the fewer people will have to endure misdiagnosis. Those of us with a diagnosis need to help those who haven’t yet.

Here is a pamphlet from Dysautonomia International on Dysautonomia to give to any doctor who needs to do some learning. This is a fact sheet on POTS. This is a POTS overview. Go forth and educate!

And Then She Told Me I Have Cancer

Having Cancer is News to Me

Last week I was diagnosed with cancer by an ultrasound technician before the test even began. I sat down and she sais, “so we are looking at the state of your thyroid cancer.” As far as I knew I was just having a thyroid nodule checked. I was nervous, but her comment terrified me. I confirmed with her that the order did say I had cancer. Did the doctors know something I don’t?

I then proceeded to ask the name of this doctor who said I had cancer. Somehow, the order was from a doctor I’ve never even seen. A doctor I hadn’t even been to yet said I had cancer. My primary doctor is the one who scheduled the test so I was very confused. Maybe this new doctor didn’t care enough to enter the correct code for the technician. I can’t even imagine what happened to make that mistake. As a result, my weekend was stressful. I had to wait four agonizing days before the doctor finally called me back.

At least for now, they have determined that the tumor doesn’t need immediate attention. I don’t understand because it has doubled in size in the past year. I also have mysterious thyroid blood test results. For some reason, I don’t feel relieved yet. Maybe it is taking a while to sink in because I was trying to get used to the idea that I do have cancer in case the ultrasound technician was correct.

I am confused and frustrated over this situation. Patients shouldn’t have to deal with a fake cancer diagnosis. Telling someone they have cancer should never come so lightly! And you definitely shouldn’t have to hear it from an ultrasound technician.

I try to be understanding of people just making mistakes. However, these sort of mistakes happen all the time to me. I’ve been misdiagnosed a few dozen times. In fact, this isn’t even my first time being told I have cancer. The first time I was told I had cancer was by a Gastroenterologist. He diagnosed me without even doing tests. As someone who struggled to get my diagnosis, I am usually all for getting diagnosed. But only is if it the correct one! Incorrect diagnoses are stressful and harmful to patients.

The first time I was misdiagnosed with cancer, I was referred me to an oncologist and they did many painful tests and put me through a lot of stress before determining I didn’t actually have cancer. For months, I thought I had cancer because my doctor didn’t care enough to get all the facts. That stress takes a toll on your mental state.

When you're really not okay but you don't want people to worry... - Imgur (1)

Too Many Rules

I also had bronchitis/pleurisy last week. I was coughing, hadn’t slept in three days, and was in terrible pain. It is now taking three weeks to get into a Pain Specialist for an appointment. So I called my doctor. She called me in an antibiotic and cough syrup with codeine to the pharmacy to help me sleep. I was excited to finally get sleep and feel a little better.

Cough syrup with codeine is monitored closely under the law. A hard copy of the prescription is required to refill it. So obviously the fax from my doctor didn’t work. I called my doctor at 4:30 PM and they were already closed! So just because of ridiculous rules and regulations I had four pain filled and sleepless nights in a row instead of just three miserable nights.

I understand that many of the rules and regulations in the medical system exist for a reason. However, people who are chronically ill have to deal with all the inconveniences created by rules daily. While I am sure that requiring hard copies may lessen narcotic abuse, but it makes it so difficult for chronically ill patients to get the medication they need. When these problems arise, doctor’s offices take hours if not days to get back to you. The rules and regulations may not stop, but how medical professionals can change to make their patient’s lives easier.

When problems do arise, doctor’s offices take hours, if not days, to get back to you. The rules and regulations may not stop, but medical professionals can change to make their patient’s lives easier.

I'm overwhelmed. - Imgur

We Need Change

The medical profession exists to help people. However, when things go wrong the medical system can ruin your day, week, or life. Even small mistakes, like the failure in communication between professionals I experienced, can really make the patient’s experience worse. Dealing with an illness is already a trying time and incorrect information can affect people’s quality of life. Shouldn’t medical professionals be working to make their patient’s quality of life?

It needs to be easier to contact doctors for questions; it needs to be easier to refill a prescription. There has to be a better way for medical professionals to communicate with each other.

Most importantly, we need to value medical professionals who do care about their patients. There is so much focus is on competition and learning in medical school that by the time those students are doctors, they have a hard time seeing them as humans. When intelligence, competition, and apathy are encouraged in medical students is it really any surprise that doctors don’t value their patient’s quality of life.

My largest complaint with the medical profession is that I am treated like a number. I have bounced around hundreds of doctors and am constantly bombarded with tests, but rarely does a doctor treat me like a human being. Treating patients like humans instead of numbers will solve many problems the medical system has. I know a doctor who cared about patients as people wouldn’t accidentally diagnose someone with cancer.

I feel overwhelmed with emotions and I don't know how to handle them. - Imgur