One bright and sunny afternoon Chiarisaurus, or Zippy, as his friends called him, and Migrainopod, Pod for short, went to the grocery store together. As they walked down the first isle Zippy started to feel really bad. His head started hurting and he got super dizzy. His vision started to get foggy and he told Pod he needed to sit down. Pod understood because sudden and severe headaches happened to Zippy a lot. So they sat down together right between the juice and water in the beverage isle. Pod didn’t care if it was socially unacceptable to sit down in the middle of a grocery store or not. He just wanted to make sure his friend was okay and do whatever he could to help.
Pod asked Zippy, “Is there anything I can do to make you feel better?”
“I would like some ice cream. That would help my head feel better.” Zippy said.
“You got it!” So Pod walked a few isles over to pick out a pint of ice cream, but there was no ice cream in the freezer. He walked around the whole store and saw that there was no ice cream anywhere. He went back over to Zippy and sat down beside him.
“There is no ice cream. It’s all gone.” Pod explained. “I don’t know what to do. What do you think?”
Zippy thought about it and said, “This sounds like a mystery that needs solving. But first I need a nap to help my head feel better.” So Pod helped Zippy up and they slowly walked out of the store eagerly chatting about who they could call to help them solve this mystery. On the way home Zippy said, “I think we should call Depresosaur. He’s always good in a crisis.”
“But when you play with D, Anxieton always has to come along. Sometimes she makes everything so scary and talks about all the things that could go wrong. She’s so anxious” Pod reminded Zippy.
“I know”, said Zippy, “and D is depressed but they are our friends and they’ll want to help us. What about Missy? Let’s call her too.”
“Missy can be so frustrating. She confuses me, but you’re right. We can definitely call her too.” Pod agreed. And they went home to rest and call their friends.
Once they got back home Zippy laid down to nap because his head still hurt. Meanwhile, Pod called D and explained to him the plan to solve the mystery of the missing ice cream.
“I don’t know, I’m so tired. I don’t want to get out of bed. You know we might not find the ice cream. I’m going to have to talk to Annie. I can’t do anything without her. If she wants to do it then maybe I’ll help. I’m just so depressed.” D complained.
“I know you are tired and sad, but Zippy really needs some ice cream. He has another bad Chiari headache and he said ice cream will make him feel better. Please help. It’s okay if Annie comes with you. We want her to help too.” Pleaded Pod.
After a brief minute, D conceded, “Oh, okay. I’ll get Annie and we’ll come right over to help. Anything for Zippy.”
Pod was so thankful that D and Annie were going to help find the ice cream for Zippy. He just wanted to help his friend feel better. He knows how bad Zippy’s Chiari headaches are and that not much can be done to relieve the pain and other symptoms they cause. If Zippy wanted ice cream then he was going to find that ice cream.
Pod decided to call Missy next. She was frustrating but he felt like she could help them if she would cooperate. “Yes, I’ll help. Wait, no I can’t. Something has come up. I don’t know. Maybe I can. I’m not sure.” Missy told Pod after he explained what was going on. Misdiagnosaur was always vague and no one ever quite new exactly what was going on with her.
“Missy, this is to help Zippy. Please come over and help us find the ice cream. We all just want to help him feel better.” Pod persisted.
“I can’t. I can’t tell you why either so don’t ask.” Missy finally said and that was the end of the conversation. It was all very confusing. It always was with Misdiagnosaur.
Pod shook his head and mumbled to himself about how Missy was so incredibly frustrating. Now he was even more confused but he had an idea. He went to talk to Zippy who was finally up from his nap.
“How are you feeling Zippy?” Pod asked.
“I feel a little better but I could really use some ice cream. Have you talked to anyone? Are they going to help us?”
“I did. D and Annie are on their way over now. Missy is being Missy, but I have an idea.” And with that the doorbell rang and it was Depresosaur and Anxieton.
All four Chargimals sat down and talked. Pod told them about his idea and they all agreed that the first thing they would do is go over to Missy’s and try talking to her again. Zippy was still not feeling very well but he gathered the strength to go along. He knew dealing with Missy would be hard, but he also knew he really wanted that ice cream and hoped they would be able to find it.
The Chargimals went to Missy’s and knocked on the door. When she opened the door she was holding a pint of ice cream in one hand and a spoon in the other and she clearly had ice cream in her mouth. She swallowed hard and looked at them knowing she was caught. Pod’s suspicions were confirmed. Misdiagnosaur took all the ice cream.
“Missy! Do you have all the ice cream?” Zippy asked.
“I don’t know. Maybe. No. I might. Perhaps I do.” Missy was so confusing. Of course she had the ice cream. She was standing there eating it!
“I have a Chiari headache, Missy. May I please have some ice cream so I can feel better?” Zippy asked politely even though he was really kind of mad at her for taking all the ice cream and not saying anything to Pod when he called her.
“I guess so. Come on in everyone. Let’s all have some ice cream.” Misdiagnosaur said and stepped back so they could all come inside.
The Chargimals sat down and all enjoyed some ice cream together. The mystery was solved and Zippy started to feel much better. He got his ice cream and he had great friends that would do everything they could to help him through the tough times he faced dealing with Chiari Malformation. He felt very lucky to have them and he couldn’t wait for their next adventure.
Doctors don’t like to say ‘I don’t know.’ It appears to be a phrase they hate. There’s a lot they will do to avoid acknowledging that they aren’t sure as to what is happening – Doctors will often use lots of scientific jargon and short phrases that remove or dismiss responsibility from themselves. Let’s explore them, shall we?
They describe the condition
There are many diagnoses out there that give doctors an easy out when it comes to explaining a strange symptom. The most common ones, arguably, are ‘idiopathic’ and ‘essential’. If you are told you have an idiopathic or essential condition, be aware that the doctor has only told you what’s happening, not why or how!
The term idiopathic literally means ‘arising from an unknown cause’. My partner was diagnosed in July 2017 with idiopathic osteoporosis. Osteoporosis itself is much more a definition than an explanation, as osteoporosis translates into ‘porous bones’. For people who fit the standard expectations, idiopathic is sometimes all the closure you would get. For example, a woman in her 70’s who gets the osteoporosis diagnosis is going to be told she has idiopathic osteoporosis, presumably due to age. However, since Al is a man under 40, it was essential to dig deeper to define the cause, as the usual mechanisms were not in play.
‘Essential’ is another way doctors avoid needing to say ‘I don’t know’. The term essential is used in standard English to describe being either of the utmost importance (this is an essential piece of the dish) or of being purely that one thing (‘essential oils’). In medical terminology, though, ‘essential’ is a synonym for idiopathic – indicating that the issue is just the description with no cause attached. ‘Essential’ is often used to describe neurological symptoms that have no obvious connection to the conditions that might usually be associated with them. Essential tremors are an example. If your doctor uses idiopathic or essential in their diagnosis – or gives you a descriptive diagnosis (like osteoporosis), with no mention of why it’s happening, it’s time to press them to explain further or seek a second (or third) opinion.
Blaming the Patient
Sometimes when doctors have trouble finding the cause of the problem, they turn around and make it, on some level, the patient’s fault.
‘Maybe he didn’t develop properly as a child’ is doctor language for ‘I see there is a problem, there’s irrefutable evidence of that. However, I can’t figure out the cause, so maybe he was born this way and we only just figured that out’. My partner and I were told this when we were investigating the cause of his osteoporosis. His broken hip and DEXA scans proved that he definitely had unusually brittle and weak bones, but this endocrinologist ran every test she could think of, and everything she thought to check didn’t explain anything. After we assured her that Al had not had weak/brittle bones as a child (he actually had been pretty accident prone, and at one point he broke a rock with his head!), or as a young adult (he was very involved in mixed martial arts, so had plenty of opportunities to reasonably break bones, but didn’t), we struck out in search of an endocrinologist who could think of more options.
‘This may be a genetic variant’ – sometimes abnormal test results fit with a person’s genetic history. Al was told a couple times that his blood test indicated mild anemia, but at one point another doctor of his looked the information over and told him he likely has smaller hemoglobin than average because he is of distant Mediterranean descent. I’m not disagreeing with the statement, it may be true – Al is Hispanic so there is some Spanish in his ancestry. However, it did take the focus off his hemoglobin size and density when he actually had a form of anemia that required treatment.
Malingering is the process of pretending to have a problem in search of some form of secondary gain. For example, a person with an opiate addiction may pretend to be in more pain than they are in to get an extra pill. For patients with many types of invisible illnesses, one of the ways doctors may dismiss our very real pain or other symptoms is to say that we are malingering in order to get attention or other gains. I was very fortunate that I was not accused of malingering, but many other people with conversion disorder/FND, fibromyalgia, and other conditions that don’t show on scans or tests are often accused of it. This results in these patients needing to ‘prove’ that they aren’t faking their illness.
Ways Doctors say ‘I give up’
‘Diagnosis of exclusion’ means that the doctor has run out of possible diagnoses. Doctors either recognize a condition when you walk in the room (‘oh that sounds like whooping cough’, or ‘I’d know that rash anywhere, you have shingles’), or they need to start coming up with hypotheses (guesses) that they can then test (usually against samples from you, or testing your response to stimuli). However, at some point, the doctor will run out of guesses. When the doctor runs out of guesses before you have a diagnosis, their last guess becomes their ‘diagnosis of exclusion’ – usually something that is difficult or impossible to confirm or deny with additional testing.
My condition, FND, used to be considered a diagnosis of exclusion by many neurologists – and honestly still is at times, even though there are now are relatively simple confirmatory tests out there – mostly related to consistency of symptoms and ability of the patient to be distracted from symptoms. Unfortunately, these are sometimes associated with malingering (pretending to be sick for secondary gain), and a lot of neurologists simply haven’t kept up with the research.
‘It’s a coin toss’ is usually used in regards to treatment. Will this surgery help me, doctor? ‘It’s a coin toss’. This is more likely to occur when your condition has been happening for a long time. If a lot of treatments have already been undergone and haven’t helped, the doctor is more likely to suggest treatments that are higher risk or are likely to be less effective. By telling you his or her degree of uncertainty, the doctor is abdicating their medical responsibility to advise you, and allowing your desperation or pocketbook to determine your course of treatment. While this may at times be a correct answer, it still isn’t useful for you as the patient. If you get told this, I suggest seeking a second opinion or discussing the pros and cons further with your doctor.
‘Let me refer you to…’ is, in all honesty, the most hopeful forms of giving up. When a doctor suspects or knows that your condition is treated by a different type of specialist, they generally refer you to the specialist in order for you to be properly treated. Sometimes, the more hopeful times, they get information that adjusts their thoughts – for example, Al’s second endocrinologist referred him to a hematologist because his B12 was almost unmeasurable and so she suspected he had pernicious anemia. Her suspicions were correct, so we are grateful for the referral.
I was referred by a neurologist who specialized in epilepsy to a movement disorder specialist who was able to properly diagnose me. Again, that was a very positive effect – once the neurologist determined that I did not have epilepsy, a colleague of his was able to suggest a movement disorder as an alternative cause – and recommend an office to go to. However, there are also times where doctors use referrals to get rid of challenging patients. By referring their patient to a different specialist, they are effectively passing the responsibility on and admitting that they cannot diagnose the issue.
Be aware of medical ‘I don’t know’s’
It can be extremely frustrating to see doctors only to learn that they cannot help you. Many doctors have found ways to avoid you realizing that they don’t have an answer until after you leave their office. As a patient, the more easily you recognize the ways the doctors avoid admitting their ignorance, the better able you are to either call BS and demand a better answer, or know when it’s time to find a different medical professional.
Again, be aware of terms that blame or put the responsibility on the patient, and condition descriptions that do not have any ‘meat’ or treatments attached. You deserve to have a full diagnosis, treatment options, and the ability to find people who share your diagnosis. Now that you know the terms, please keep your ears open to protect yourself from these non-answers!
Alison Hayes has a long history with disability and disabling conditions. She managed a mild learning disability in childhood, confusing her classmates by being in both advanced classes and the ‘resource room’. She was diagnosed with depression at the age of 9, and had her first unexplainable symptoms within a year or two of that. While in college, she started having strange movement symptoms, leading to an eventual diagnosis of conversion disorder in 2003.
Since then, she:
got on to SSDI,
got trained and certified in geographic information systems(GIS),
discovered new muscles by pulling, straining or spraining them,
taught college courses in GIS,
taught a lot of doctors about FND,
got a master’s degree in organizational change management,
regained the ability to safely use stairs, and
Started her own business. Twice.
She currently runs Thriving While Disabled, a blog to encourage others with disabilities to take back control of their lives, and is working on a community-building tool to enable the disabled community.
Sometimes, it can be a struggle to get a proper diagnosis when something is not right in your body, Today, I’d like to tell you the story about when I was having breathing problems as a teenager. I was misdiagnosed as having anxiety but in reality, I was actually having a much more serious issue. The following is the story of how I was finally diagnosed with a thyroid disorder.
Growing Pains? But I’m not Growing Anymore!
My symptoms started when I was around 14 years old. I was living in Holland at the time and sitting my Dutch class when, out and out of the blue, I got shooting pains in my upper arms and across my chest. These pains were so intense that I got out of my chair in the middle of class. I went to the doctor where they did a lot of tests. They checked my muscles, joints, and blood and nothing showed up so they told me it was probably just growing pains. This didn’t really make sense to me at the time and at my age, but I just listened to the doctor and went on my way.
I’m Calm, Really
Over the next couple of years, my symptoms started to change and still seemed very strange to me. By the time I was 16, I started to constantly experience shortness of breath. I felt like I couldn’t take a deep breath in. Once again, I went to the doctor and they started checking my oxygen levels. My oxygen levels were fine, so they decided it must be all in my head, like I was having anxiety. By the time I was almost 18, the doctor sent me to breathing therapy because he thought I was having panic attacks.
I didn’t feel like I was having panic attacks. To me, it was something that just happened and would subside just as suddenly as it came. I just felt like I couldn’t breathe properly. Around this time, I would also have strange dreams in which I was choking or like I was drowning underwater. After what was probably just a few minutes, I would wake up and take a deep breath. My body just felt like it was under so much stress, but when I would explain this to the doctor, it would be dismissed as anxiety.
Breathe in….Breathe out….
The doctor sent me to therapy to learn breathing exercises to help me cope with this so-called anxiety. I learned to ground myself and to take very controlled breaths in through my nose and out through my mouth and how to do these breathing exercises when I’m in situations when I feel stressed or need to calm down. Funny enough, this helped me about 15 years later when I was pregnant and found myself in a scary situation, but did nothing to help my current health difficulties as these were not, in fact, panic attacks.
By the time I was around 19, I was going from hospital to hospital and having test after test, but no one could figure out what was wrong with me. Each test would come back negative, and that was just about the worst thing someone could tell me. According to them, I was the picture of perfect health. That really upset me because I knew something was wrong. I know it sounds crazy because to most people, a negative test result would be a good thing, but I knew something was wrong with me so it actually made me quite upset.
A Lead in the Right Direction
When I was 19, they did another comprehensive blood test to really try and figure out what was wrong with me. As a result, my doctor discovered that I had something wrong with my thyroid and referred me to the hospital to have an ultrasound to try and figure out what’s really happening. I called the hospital to make an appointment for the test and to see a specialist, but I was told the first appointment wouldn’t be for four months. The lady who was scheduling asked me if it was an emergency, and my doctor didn’t say it was, so I said no, as my doctor didn’t say it was, and waited the four months until it was time for my appointment.
At this time, I was 19, living independently from my family in another city, and working part-time in a butcher shop. When I was at work one day, people started looking at me really strangely and asking me what was wrong with my neck. I looked in the mirror and it looked like I swallowed an inflatable, donut-shaped life preserver! It looked like a cartoon! My neck was swollen really badly, but even though it looked and felt strange, it didn’t hurt at all. My hands started shaking, but at only 19, I still didn’t know that anything was really wrong.
I went to the doctor, but figured I would probably be okay since I’m already on the waiting list to go to the hospital. It didn’t occur to me at the time that I should call the doctor and tell them what my symptoms are. My neck was huge, but at that point, I didn’t even know where my thyroid is or what symptoms to watch out for. Back then, the Internet wasn’t really available like it is now. I did do some research in the library, but still didn’t think it was a big deal, and by this point, my hospital appointment was only three weeks away, so I thought I could wait. By this point, my hands were trembling so badly that it became a game to see if when I ate something like soup, anything would be left on the spoon by the time it reached my mouth.
As Serious as a Heart Attack
The day came that I had my appointment and I was sitting in the waiting room with one of my friends. The doctors kept coming in calling the names of each patient as it was his/her turn to come back. Finally, I was called by a doctor that was old and cranky to say the least. He called out my name and I got up. He has never seen me before and knows nothing about me. He just knows I’ve been referred and he needs to have a look at me. The doctor looked at me and said that he hoped I had been sent there urgently. I’m like, “What?!” He asked how long I had been on the waiting list. I told him I had been waiting four months. He was shocked and said that I need to be seen by cardiology urgently. Once again, I was shocked! I asked, “What? Where are we going?” He said that he needed to make sure my heart would last the day. “WHAT!?!?”
There I am, walking with this doctor, and we’re going past all these elderly people waiting in line. There was a lady who was probably 80 years old sitting with an IV running, and yet I was the urgent one! First, I went to cardiology, where they stuck all these things all over my body to test my heart to make sure I was fine. I’m like, Oh My Gosh! Again, I’m 19, so my friend, who was maybe 21 at the time, and I were laughing and giggling throughout. We would laugh and make jokes to ease the tension, but all the movement was impacting the test, so soon enough, the technician peered through the curtain and told us to stop so he could get an accurate reading of my heart rate. We calmed down so he could check my heart rate. It was not very good, but it was good enough to allow me to go to my consultation.
By this point, I was freaked out. I just wanted to know what was happening to me. I had the consultation, during which he ran bloodwork and tests to make sure I was okay because he was scared that I was going to have a heart attack. Again, I was 19 and had been having these symptoms for three years. I told him about my shortness of breath, that I had to go to breathing therapy, and because of it, I can calm myself down when I get tense, but I still couldn’t breathe normally.
The doctor said that the reason I couldn’t breathe was because my heart was in such distress that I couldn’t get enough oxygen. I just freaked out! I could not believe what he was telling me. Long story short, I had to go into the hospital every four days for a whole bunch of different tests and it turns out that I had Grave’s Disease, which I later found out is an autoimmune disease of the thyroid.
A “Grave” Answer
At the time, I was told I had this condition, Graves Disease, but the doctor really didn’t tell me much about it. He said it should go away on its own in about a year and a half, so we just needed to focus on getting through the next year and a half. Knowing what I know now, I would have questioned this, but at that point, I was still only 19 and didn’t know much about the thyroid. I was told I just needed to take a some pills for my heart and some for my thyroid and additional pills to counteract the effects of those pills, about 13 pills in all. I also had to go into the hospital for tests every four days for the first six months of my treatment.
I had treatment for about a year and a half. My Graves was under control and I thought I was cured, as this is what the doctor told me. I was taken off all the medicine but warned that in about 20 years, I would have the opposite problem: my thyroid would go too slow instead of too fast like it had worked previously.
The doctor explained that with Graves Disease, your thyroid works too fast. Your thyroid is like the motor of your body. When things like your digestion goes too fast or you feel anxious and jittery, or you have a fast heart rate, you’re hyperthyroid. That’s what had caused all of my weird symptoms. The doctor told me I was cured after taking all the medicines.
My Graves Disease was gone, but in about 20 years, my thyroid will to be too slow, or hypothyroid, but that’s about it. He said I would have to take a pill for it for the rest my life, but that’s about it. That didn’t sound so bad, so I just signed the papers and left the hospital. No more tests, no more pills, no more anything. I was finally free to go enjoy my life. I was cured! Or so I thought….
Pregnant! But Something Wasn’t Right…..
Seven years later, I got pregnant. I had a pregnancy from hell. I didn’t know what was going on. I had bad moods all the time. I was so tired that I couldn’t stay awake for more than 3 or 4 hours per day. It was really extreme. They thought I had postpartum depression 6 months after I gave birth to my daughter. Years later, I found out that I actually have Hashimoto’s Disease, which is an autoimmune disease of the thyroid, but now the thyroid goes too slow. The doctors gave me a pill and said to take this pill every morning when I woke up and I’ll be fine. I had to test my thyroid every year.
The numbers looked okay, but I still wasn’t feeling well. Long story short, when I was researching Hashimoto’s, I figured out it’s not just hypothyroidism, or when your thyroid goes too slow, it’s an autoimmune condition. I also figured out that Graves was an autoimmune disease of the thyroid, which I never knew before. Apparently, I had an autoimmune disease of the thyroid, but it was just in remission. I wasn’t cured at all, and the doctor failed to tell me about it because I’m sure that he knew. Since I was 19, he thought he could just keep it light and simple, and just tell me I was cured. You can read more about my pregnancy here.
Always Trust Your Instincts!
They lesson I learned and that I hope to convey to others who are teenagers or young adults is that teenagers can remember. I remember every single thing that this doctor told me. If he would have told me that I had an autoimmune disease of the thyroid, I would have done things differently while I was pregnant. I would have pressed for a test of my thyroid. I would have told them that I had a thyroid issue when I was about 19, but I’m cured. Instead, no one ever tested me. No one looked for anything while I was was pregnant, and I think a lot of my cascading downhill health could have been prevented if I would have been presented with the right information when I was a teenager and having all these problems.
Teenagers know when something is wrong with their body. They’re not just being lazy. They’re not just having panic attacks. They’re not just making it up. If they are really suffering from issues or having symptom for years at a time, it’s real, and you just have to search until you find it. If you have a problem with your health, be your own advocate. Don’t give up. Even when the doctor told me I was having panic attacks, I still didn’t believe it. I complied with the doctors and went to the breathing therapy, but I never ever gave up. It didn’t matter how young I was. It didn’t matter that nobody believed me. I just kept going. I got my diagnosis and in the end, I got my treatment.
When I was 19, I was diagnosed with Graves’ disease, which is an autoimmune condition of the thyroid that causes it to work faster than it should, also known as hyperthyroidism. When I received this diagnosis, I was never told that pregnancy effects the thyroid. I had treatments at the time and eventually the doctors told me that I was cured. Well, eventually I became pregnant and remember these treatments when I was reviewing my medical history with my midwife at me first appointment, which was when I was about 13 weeks along.
I’m Dutch, and in Holland, we tend to use midwives during pregnancy. Most midwives are big believers in home and keeping things as natural as possible. I filled in the forms with all the pertinent information about my parent’s health history as well as my own, and included the information about my previous thyroid issue. They took all of this information and added it to my file along with recent blood tests, which were all normal. However, in Holland, the blood tests do not include anything about the thyroid.
I’m Pregnant…..But Exhausted!
In the first trimester of my pregnancy, I was extremely tired, much more than normal. I could only stay awake for about 3 or 4 hours per day and the rest of the time I would be sleeping. When I told my midwife that, she didn’t think this was unusual. She said that first 3 months of the pregnancy are the most important ones, so I should actually be resting as much as I can. Something still didn’t seem right, and I asked her if it’s normal to only be able stay awake for 3 or 4 hours. That seemed kind of excessive to me. Shes was dismissive of my concerns and just said that everybody’s different, so I should just go with it and I’ll feel better.
Then the nausea started. I was about 10 weeks pregnant when the nausea started. I spoke to my doctor and midwife and was told it will be better when I hit 12 weeks, but sometimes it goes on until about 14 weeks. At 14 weeks, I was so nauseas, I couldn’t eat and I was starting to lose weight, which obviously is not something you want to happen while you’re pregnant. This made them start to take it a little more seriously, and when I was 16 weeks pregnant, they gave me medicine to lower the nausea so I could eat something. That’s medicine helped a little, but the nausea didn’t go away. I didn’t just have morning sickness, I was nauseas all the time, and that lasted until I was 26 weeks pregnant.
By then, obviously, you could see on the outside that I was pregnant and while I was happy to be having a baby, I was not feeling happy. I felt like I had this dark cloud above my head all the time. I was constantly in a very bad mood and I was just very unhappy and I didn’t know why. I was less tired than in the first trimester, but I was still really tired. Everything was hurting me. I kept going to the doctor and would tell him that I understood these are pregnancy symptoms, but this just all feels very excessive. I didn’t know any other moms-to-be that were like this. I wasn’t really depressed, but more like in a bad mood and unhappy about everything. I felt like I wanted to fight about everything and I just didn’t want to do anything but just be laying down. When I was laying down, I felt really bored. I was just really unhappy all the time.
S
Something Doesn’t Feel Right
When I was about 26 weeks pregnant, those negative feelings finally started to fade and I thought that maybe I was finally get to the part where I do feel better. Things were going okay until I was 32 weeks pregnant. I was still working at the time for my job, and we had a dinner with all the coworkers. During dinner, I started getting these sharp pains in my belly, so I started to walk back and forth in the restaurant. All my coworkers were really nervous that I was going to have the baby right then and there. I thought I would walk it off and I’ll be fine. After an hour of walking back and forth in the restaurant, my manager suggested that maybe I should go home. My mom came and picked me up and took me home with her.
The next morning, these sharp pains still weren’t gone. I went back to the midwife and she told me that the baby wants to come out, but I was only 32 weeks long, so it was way too early. Then, she put me on strict bedrest. I was shocked! I was on strict bedrest until 38 weeks. So for the 6 weeks that followed, I was kind of like an incubator. That’s how I felt. During this time, my mood worsened. I was more and more unhappy and I just wanted to have this alien baby out of me because I was done with this.
I must say that this midwife gave very good mental counseling and support, and she’d come to my house and tell me things to calm me down, like that I may feel this way now, but if my baby’s going to be born now, it’ll be premature and and I’ll have all these worries. She said that even though it’s very hard being stuck in bed, that I should understand that I’m doing this for my child and will be fine. She reminded me that this was just temporary and when my child get born at a normal stage, I’ll feel better about it. I listened to her.
The doctor never did any more tests. They never checked anything extra. They just told me it was all pregnancy symptoms. And then the day came that I went into labor. I was excited and eager to go to the hospital, but that’s not how it works in Holland. The midwife comes to your house and she checks how far along you are and she makes a call if you can go to the hospital or not. She told me, nope. I was too far along already and it’s going really fast. I could not go to the hospital and would be having my baby at home. I’m like, WHAT??? I don’t want to have my baby at home!!! I knew I really couldn’t do anything about it though, so I went along with it. I’m like okay, let’s do this. But the baby did not want to come out.
Welcome Baby!
After about an hour of trying to push her out, nothing was happening, and the ambulance was called. I lived in Amsterdam in an apartment on the 4th floor, and if you know houses in Amsterdam a little bit, the stairs are really steep. I had practiced because I knew if I needed to get down these stairs while I’m in labor, I’m practicing these freaking stairs! It was the middle of the night in January 15th when the ambulance arrived, and it was snowing in Holland at the time. The ambulance was there and they told me whenever I didn’t have a contraction, I should go down the steps and into the ambulance. And I was like, now! I can do it now! I ran down the stairs and I reached it in time for the next contraction. Apparently, I went out just in my bare feet just wearing a T-shirt. The paramedics told me to stop pushing. I didn’t even think that was possible!
A
During the whole ambulance ride, I’m in the ambulance with 3 men. Men! Three men telling a woman in labor to stop pushing. That is not happening! It’s like, impossible! Anyway, a long story short, we made it to the hospital. I ended up having a cesarean because, despite trying to get her out for an hour, she did not want to come out. My oxygen was starting to get low. My contractions were basically stopping. I felt much better now, which the paramedics said was apparently a bad sign. They rushed me into the operating room and I had a C-section and my daughter was born.
I was really happy to see her, obviously, after she was born, but my recovery was extremely slow. They kept telling me that if I can get up and go to the bathroom by myself, I could go home. After 4 days, that was still close to impossible. I couldn’t move my body. My body was so exhausted that I just couldn’t move it.
At this time, I didn’t know that I have a whole bunch of autoimmune diseases and I just thought, why am I so tired? Why is my body not moving right? With the help of my then husband and my mom, we managed to get me to the bathroom and get me released from the hospital to go home, but as I told you, I was living on the 4th floor with stairs that are this steep, and now I had to get up these stairs. My mom and my then husband literally took my feet and placed them on the next step and I’d pull myself up. We’d repeat this process until I made it up the stairs. They couldn’t carry me because I had just had a cesarean and everything was hurting. Then I was in my apartment in bed where I was just was for 6 weeks before my daughter was born. She was born at 38 weeks and 2 days and then I was in bed for almost another month. I just could not get out of bed.
Something’s Still Not Right……
Once I was home, the midwife came by and said that I should just do it. She insisted more and more that I should push myself to just get out of bed. She said that my recovery was going too slowly. Once again, I had no tests to try and find out what was wrong with me, just all the regular tests they do after you have a baby and they did with my daughter as well. No one was really concerned about why my recovery was so slow and why my mood was so bad.
In the days that followed, psychologists came to my house to check on me. They would sit next to my bed with the midwife and people from all sorts of agencies. There were so many people coming by because they were checking for postpartum depression, but I was cleared and told I was fine. After about 2 weeks they left me alone. I slowly recovered. My bad mood was less, and I lost all the weight that I gained, which was not a lot since I didn’t gain a lot of weight because I couldn’t really eat. But I lost all of the weight from the pregnancy within 10 days after the cesarean.
Then, I started to have a very poor appetite. I was really tired again, but this was more extreme. I knew new moms are really tired because they wake up during the night to feed the baby and everything, but I was deadly exhausted. I couldn’t move. I couldn’t think. I couldn’t eat. I couldn’t even walk. I started gaining a lot of weight, but I didn’t really eat much. It all seemed very weird to me and I started getting depressed.
I started getting hallucinations. I’d imagine I was standing on top of the stairwell with my daughter and in my mind I saw us tumbling down the stairs. I knew this was not happening. Later, when I felt better and I was able to drive again, I would drive to work. While I was driving and focusing on the road, my mind would show me images of crashes happening and me tumbling over with the car. It was just surreal. It was the weirdest thing! Then, I would look in the mirror and I would not see myself. I saw another person. When I saw pictures of myself with friends and family from before I had the baby, I saw a different person. Only the pictures that were taken when I was feeling like this looked like me. I went to the doctor and described these hallucinations. I said I didn’t know what was going on, but this was all very strange and doesn’t feel like this should be happening to me.
The doctor told me to go to the psychologist. I went there and I felt like she really didn’t take me seriously, so I didn’t want to go to her anymore. I wanted to go to another one. My doctor didn’t agree and was really upset with me. One day, I bumped into him in the bakery and it was just very awkward and I was just very unhappy about it.
Taking Back Control
About 7 years ago, I started doing my own research. I was looking into depression and depression clinics. I found a depression clinic in west Amsterdam that looked like it would be a good fit for me, so went back to the doctor and asked him for a referral so I can try to go there. He came back and reluctantly agreed give me a referral letter. I went there, and that was the best thing that I’ve ever done.
My psychologist was just a girl my age that I could speak to on my level. She believed everything I told her. She was even doing research for me based on all my symptoms. She said that she doubted it’s postpartum depression because was about six months after the baby was born, which is really late. She said if it was postpartum depression, I would have had it right away after she was born. She thought the fatigue I had told her about could be chronic fatigue syndrome, and advised me to look into that. She worked with me based on her diagnosis and told me talk to my doctor about it, and see what you think. I worked with her for about three years every week. While that did help me, it didn’t solve the problem. We worked on positivity exercises, how to make my world a little bit smaller, mindfulness exercises, and how to come back to myself and my core, but something was still off.
At some point, I think about 6 months into my work with her, they did a test, and it turns out that my thyroid completely stopped working. Zero. It did not do anything anymore. That explained my hallucinations, my depression, my gaining weight while I wasn’t eating, and all of these previously unexplained symptoms. They gave me the thyroid medicine, Synthroid. I started taking it and the first 6 months, I started to feel much better and after a year, I was almost back to my old self. I still didn’t really lose the weight, which was kind of weird and my moods were still on and off. I was still exhausted and in a lot of pain, but it was much better than it was before.
Years later, I was actually doing research for the Unchargeables Chronic Illness Community to look more into thyroid issues. Back then, the community was more for people with fibromyalgia because I had fibromyalgia and so that’s what I could support people in. Then I realized, well, I have this thyroid thing as well. I take this pill every morning, but there must be other people with thyroid problems like me. I thought maybe I could support them too by sharing my story and just offering them some support.
It’s a Miracle!
I was doing research about thyroid issues, and I stumbled upon this thing called Hasimoto’s Disease and miracle babies. I was surprised and decided to look more into this. There were these stories of women who were pregnant and had all the same symptoms I had that didn’t experience all the stabbing pains in their stomach, but their babies didn’t make it. Only about 10% of these babies survived and actually were born into the world and those were called miracle babies. I’m like, oh my god! I think my baby’s a miracle baby!
By this time, she was already three or four years old. I started looking at all the symptoms and the treatments and everything. I read about a whole bunch of people who were taking the Synthroid medication, but this was just not enough for them and this was not making them feel any better. There were a lot of people that reported that natural thyroid medication made them feel so much better.
I started looking into that and researching more. I read medical books about the thyroid and about Hashimoto’s and understanding everything better and then I discovered this: Thyrovanz. This saved my life! When I switched from Synthroid to Thyrovanz, I got my life back. I wasn’t so tired anymore. I didn’t have bad moods and mood swings all the time, The fatigue and pain and just not happy about life improved. I could move. I could walk. I felt so much better! Today, my daughter is now a happy 7 ½ year old and we are super-happy together.
The lesson I got from this is even though your doctors may know a lot and they studied for a very long time to become a doctor, do your own research. Be your own advocate and make sure that your medical treatment is correct for you because every body needs something different. Do your own research and try to work with your doctor.
Adrian looked around the waiting room, noting that he was
easily the youngest person there. Most of the people sitting in the room were
easily a decade older than him, probably more, and that all of them were women.
This made him embarrassed. He knew that most people seeing a rheumatologist
were women and probably older, but seeing it in person was different.
Feeling uneasy while waiting
Adrian
tried to ignore his embarrassment by looking at the decorations on the wall,
which was all still life photographs. He had to suppress a snort, of course
that’s what was on the walls. Just like every doctors office, there has to be
boring, framed photos of nothing interesting.
“Adrian
Thompson,” the nurse called.
Standing up
slowly, Adrian followed the nurse to the exam room in the back. Even as he
followed her, he couldn’t keep up and had to walk significantly slower than her
because the pain in his joints was so bad. He immediately sat down in the lone
chair in the corner when he reached the room, ignoring the exam table.
“What
brings you in today?” the nurse asked.
“I’ve
been having pain and swelling in my joints, muscle pain, fatigue, and stiffness
when I wake up in the morning or if I move after I’ve stayed in the same
position for too long” Adrian replied.
She wrote
everything down, looked at him quizzically, and said the doctor would see him
soon. Adrian looked around the room after she left. He noted several arthritis
posters, a osteoporosis poster, and some three dimensional models of joints on
the counter.
The doctor
30 minutes
later, the rheumatologist, Dr. Erikson, entered the room. He read the notes
that the nurse had made and asked what brought him in. Adrian repeated exactly
the same thing he had said to the nurse.
“Hop
onto the exam table,” he said.
Adrian
flinched several times when Dr. Erikson pressed on points that hurt, then
ordered some blood tests and offered to prescribe him painkillers for the
intervening days until he saw him again.
“No,
thank you,” Adrian said, “I am an addict in recovery, I have 60 days
clean and sober today, and I don’t want to risk going back into active
addiction.”
“Good
for you getting sober,” Dr. Erikson said. And with that, he left the room,
telling Adrian to make another appointment in 30 days.
Second appointment
The
following 30 days were agonizingly painful and long. Adrian desperately wanted
to know what was wrong, because something was obviously wrong. The constant
pain was something he didn’t think he’d ever get used to, almost worse than the
pain was the fatigue that was making it hard to be a functional human being.
Adrian could barely remember what it felt like to wake up feeling rested.
Returning
to the doctor’s office, Adrian waited an hour just in the waiting room just to
wait another hour in the exam room. When Dr. Erikson finally, finally, showed
up, Adrian became hopeful that he might finally have an answer. He was
disappointed.
“All
your labs came back negative, there is nothing physically wrong with you,”
Dr. Erikson told him.
“So
what happens now?” asked Adrian.
“Here
is the business card of a good psychiatrist in the area. I’d recommend talking
to her and getting on the proper medication” the doctor told him.
Adrian was
so upset he couldn’t speak. Even a doctor, the best rheumatologist in a 50 mile
radius, thought he was making up the pain and various symptoms he was
experiencing. Adrian numbly walked out of the office and got into his car. When
he closed the car door, he finally broke down. He wasn’t crazy, was he? He
didn’t think so. But either way, he pulled out the psychiatrist’s card and made
an appointment.
Continuing the search for awnsers
Over the
next year, Adrian searched for an answer. He saw the psychiatrist, who referred
him to a therapist and a different rheumatologist, that rheumatologist referred
him to a different psychiatrist, who told him to see another rheumatologist. He
didn’t have anyone actually believe he was actually in pain until he finally
gave up on specialists and saw his general practitioner.
Adrian
told his general practitioner his symptoms, telling him about all the struggles
to find an answer, and he watched the doctor’s eyes light up. Adrian knew then
that he finally found a doctor who completely believed him, and he was
ecstatic.
“Here’s
an order for more blood tests and an order for getting your hands and feet
x-rayed,” Dr. Johnson said, handing Adrian the stated orders, “Come
back in two weeks and we’ll review the results.”
U.S. Army Spc. Juan Hernandez, Jr., McDonald Army Medical Center U.S. Army Medical Activity medical laboratory technician, draws a blood sample from a patient at Joint Base Langley-Eustis, Va., June 26, 2017. The JBLE lab technicians perform over a million tests annually and study the hematology, coagulation, chemistry and microbiology of the samples. (U.S. Air Force photo/Staff Sgt. Teresa J. Cleveland)
Adrian
immediately went to get his blood drawn, and two weeks later he was back at the
office, eagerly awaiting the results.
The results
“Adrian
Thompson,” the nurse called. Adrian got up and followed the nurse into the
exam room, and 20 minutes later Dr. Johnson came in.
He spent
five minutes looking at the results from Adrian’s tests, and then looked at
Adrian.
“I know
what’s wrong,” Dr. Johnson told Adrian.
“What?”
Adrian asked eager to finally have an answer.
“I
have two diagnoses for you. The first is about the joint pain. You have no
markers for it, but you have what’s called seronegative rheumatoid arthritis,
based on the high amount of inflammation and the damage to the joints in your
hands and feet. The second is related to the muscle pain, and there’s no
specific test for this, but I believe you also have fibromyalgia.”
Those were
exactly what Adrian thought he had from his research, but having confirmation
was both a relief and a weight on his shoulders.
“So
where do we go from here?” asked Adrian.
“I
will give you a copy of the results and write a diagnosis on a prescription
pad, and I’ll give you a card for a rheumatologist. He will know better on what
medications to put you on, but I’ll give you a couple of things to treat the
conditions while you wait to see the rheumatologist.”
Finally getting a diagnosis
Adrian
went home in a daze. As soon as he got home he called and made an appointment
with the recommended rheumatologist. With that done, Adrian got back into his
car and began the hour and a half drive to the beach, the place that always
seemed to calm him. Since it was still winter and he was in Washington, Adrian
made sure to take a heavy coat with him. He tried not to think much on the
drive, and to appreciate the beauty of the forest around him.
When he
reached the beach, he put on the coat and began to walk along to beach right on
the edge where the forest ended and the beach began. The beauty of the place,
with the rock cliffs in the middle of the ocean that somehow had trees on top
the constant green of the forest, and the drift wood that had washed up on
shore. This place always brought Adrian a sense of calm. Adrian got to be alone
with his thoughts since it was nearly deserted because it was no longer tourist
season.
As Adrian walked, he thought about how much his life would
change because of the two diagnoses he was just given. He didn’t know if he
would be able to continue to work at his goals, if he would be able to work as
a nurse like he was studying for. He didn’t know if he could continue to live
in this beautiful area, because the weather always hurt his joints. But most of
all, Adrian thought about how scared he was about the future. He knew what
advanced rheumatoid arthritis could do to joints. He had seen the pictures online. Adrian even
let out a couple tears as rain began to fall, counting on the rain to hide his
tears from anyone who might look at him.
Adrian
knew his life was about to change, and as he got back into his car to begin his
drive home, he tried to just be grateful to finally have an answer after over a
year of searching and allow the future to turn out however it’s meant to.
Chris Thoman is a 23 years old, college student, and lives with several chronic illnesses. He loves meeting and talking to new people, especially those who struggle with similar things as him. Follow him on Instagram
I’ve always had an uncanny knack for remembering dates. Don’t ask me why I still remember that my 6th grade orientation was on August 26, 1997. But the date February 25th always makes me think back to 2016. That was the day I spent a solid 8 hours in the emergency room. And the day a huge diagnosis was missed.
At that time in 2016, I was having migraines almost daily and no one knew why. I would joke regularly in my journal that it must be a brain tumor. (Although, deep in my mind, “joking” was actual concern on my part at times.) I had already missed entire weeks of work since the beginning of the year, and this was only the end of February.
On January 18, 2016 I wrote, “I’m incredibly restless. I can’t sit still at all. I feel tremendous anxiety about missing work today. I feel like a horrible person. But I don’t know what else I can do about these headaches! Maybe I have a brain tumor. It would certainly explain a lot.”.
Getting Worse
This particular week was my first week back from a two week continuous leave. I spent those two weeks at various medical appointments. I was finally diagnosed with Status Migrainosus and was started on five new medications to prevent migraines. I also sat through three days of 4-hour long ‘migraine’ infusions while I was off. So far though, I had made it through this first week back at work mostly unscathed.
But on Thursday morning, February 25th, 2016, I woke up around 10 am with the worst migraine I had ever experienced. I got out of bed to see if it would make me feel better. Sometimes, I would wake up with headaches that were helped by a positional change. However this wasn’t the case and I quickly decided I needed to lay back down. Then, when laying down seemed to make it worse (whereas that usually makes it better) I told my husband we needed to go to the emergency room. This was easily a 9/10 on the pain scale.
Too Bad To Ignore
(Trigger warning for next paragraph: emetophobia)
I called off work, we got into the car, and we drove the 27 miles to the main campus emergency room where my husband works. The pain was so bad I thought my head was going to split open. I threw up twice in the car, once while waiting at a stoplight. I felt bad for the people in the car next to us.
One perk of having your husband work in an emergency room is that you can go in the ‘Employees Only’ access door, scout out the charge nurse, and skip waiting through triage. As compassionate as healthcare professionals can be towards patients, there’s also something to be said for “taking care of our own.” Within a few minutes, I was in bed in a corner room of a quieter unit. My nurse was a friend of ours, a no-nonsense military veteran with a heart of gold. The doctor who saw me knew my history and had treated me for a migraine in the ED before. It was during the first week of January, just after the migraine fiasco had begun.
At The Hospital
Due to this, he immediately requested a placement for me on the Neurology floor before even seeing me. My husband met him in the hallway to tell him what was going on. After confirming I wasn’t pregnant, I was given medicine to help with the nausea. After that, a CT scan to rule out bleeding in the brain. Since I wasn’t, they were able to give me Toradol for my pain. (As an NSAID, Toradol can make bleeds worse.)
Before long, the neurology team came and saw me. They gave me two options: 1) I could be admitted for infusions or 2) I could do a steroid burst and taper. I chose the latter because I will do anything to avoid a hospital admission and the infusions hadn’t worked the week before. So I was given a steroid burst in the form of an infusion of methylprednisolone to hopefully knock out whatever might be causing such a severe migraine. Additionally, I was given a prescription for prednisone to taper over the next week.
By the time we were getting ready to leave, my migraine was down to 5/10, which was considerably more manageable. On the way out, we casually mentioned to the attending physician that I had just had an infertility workup and it showed my prolactin was elevated at 98.1, which can indicate a tumor on the pituitary gland. We double checked that the CT scan showed no brain tumor. The doctor said, “Anything large would have shown up on the scan so unless there’s something really tiny on the pituitary, it would have been seen.”.
A Diagnosis
Less than a week later, I received a message from my reproductive endocrinologist.
“Your FSH, LH, and E2 are all low, which indicates suppression coming from the brain (hypothalamic cause). This likely reflects a small growth in your pituitary gland (your prolactin was elevated.) This is the most common kind of pituitary growth and is usually NOT CANCER. The next step will be a head MRI. I see you had a normal CT…”
On March 9th, I had an MRI that confirmed the presence of a 6 mm microadenoma (specifically a prolactinoma) on my pituitary gland. I had a brain tumor! A real brain tumor! Such a tiny thing yet it was causing such huge problems. It explained everything, from the headaches to the infertility. (Too much prolactin suppresses ovulation by affecting the levels of FSH and LH, which control ovulation.) In essence, I wasn’t ovulating because of the tumor.
The Next Steps
My treatment was rocky. There were two medications available to shrink the tumor, but I reacted badly to both of them. Although I was no longer having migraines, the side effects of the medications continued to cause me to miss weeks of work at a time. My quality of life was essentially as bad as it had been before the diagnosis.
After it was determined that I “failed” both medications, I was finally allowed to see a neurosurgeon in July. While surgery is not routinely performed on my type of brain tumor, the neurosurgeon recognized that the life I was being forced to live was not one that anyone should have to live. We discussed the options left, surgery or radiation, with surgery having a slightly better cure rate (70%) than radiation (50-60%). My husband and I didn’t even have to discuss it. We just looked at each other, a silent communication passing between us. I turned back to the surgeon and said, “We’ll proceed with the surgery.”.
A Final Solution
On September 8, 2016, my itty bitty brain tumor, which I had nicknamed “Mini,” was removed during a four hour surgery. I spent 48 hours in the hospital and then continued a very long recovery at home. A year and a half later, there are still no signs of recurrence.
Am I upset that the emergency room missed the tumor? No. As the attending physician said, the tumor would have had to have been “really tiny” to be missed. And it was really tiny.
The Takeaway
While we may get frustrated when physicians miss a diagnosis, especially when others seem to diagnose it easily, we need to understand that sometimes, a big problem can be caused by something really tiny. And that really tiny things, even brain tumors, can be difficult to see.
Laura Tietz is a pediatric pharmacist. She has multiple chronic illnesses, but she enjoys spreading awareness about them through her blog, ribbonrx.com. Reading, writing and sharing life with her husband and seven cats are her greatest joys in life.
I called off work, we got into the car, and we drove the 27 miles to the main campus emergency room where my husband works. The pain was so bad I thought my head was going to split open. I threw up twice in the car, once while waiting at a stoplight. I felt bad for the people in the car next to us.
Laura Tietz is a pediatric pharmacist. She has multiple chronic illnesses, but she enjoys spreading awareness about them through her blog, ribbonrx.com. Reading, writing and sharing life with her husband and seven cats are her greatest joys in life.