Let me start of by saying, I am very happy I don’t have cancer. It’s a horrible disease and I don’t wish it on anyone. That being said, telling me “At least it’s not cancer” is not making me feel any better.
Fibromyalgia the mysterious disease
I live with Fibromyalgia, there’s not a whole lot known about the disease. We have recently found out that it’s a progressive neuro-disease. At least that’s what they think now. It changes about every year, because the fact is, they really don’t know. It’s mysterious and there is no cure.
I am in pain every single day, the pain travels through my body. I never know how bad it’s gonna be, where it’s gonna show up or if I’m even able to function at all.
With fibromyalgia comes the fibro fog, or brain fog. That means that it feels like there is a thick fog in my brain preventing me to think clearly. Or even find the simplest of words, in any laguage for that matter (I speak three on a daily basis)
Next to my Fibromyalgia I have been diagnosed with Graves’ disease and Hashimoto’s disease (both autoimmune thyroid disorders), Celiac disease and Raynauds disease (both autoimmune as well). They say when you have one autoimmune disease, more will follow. Why is that though?
Many vague symptoms
Prior to being diagnosed with any of my conditions I had a long list of vague symptoms that didn’t seem to correlate to eachother. The first thing they test for is cancer. It’s the most well known disease that can show itself in different ways.
Along with a bunch of other test, including general autoimmune (ANA) test they came back. All your test results are negative. You are the picture of perfect health.
People around me were relieved. “At least it’s not cancer”. While I was relieved I didn’t have cancer, I still did’t know why I felt so ill all the time.
Graves’ Disease
At the young age of 19, after 3 years of being tested on a range of things without any results, this one came back positive. I had Graves’ disease. It was so extreme and in such far stages, that my main symptom (being out of breath) was caused by the strain on my heart.
At the age of 19 I was rushed into the heart monitor room because they were afraid I could have a heart attack at any moment.
But at least it’s not cancer, right?
The way to treat Graves’ disease back then, is to give you some type of chemo therapy, to slow your thyroid down. By the way chemo therapy is also used on patients with Lupus, RA and other autoimmune conditions as a treatment option.
A decade later
Fast forward a decade and some. The Graves’ disease is in remission, yay! I’ve gotten all the new diagnosis I’ve mentioned above. But also a msyterious new thing that is making me loose weight, fast. Very fast!
Even though I eat plenty, I keep loosing weight. Again they have done a lot of test, tested for cancer again. All clear. “At least it’s not cancer” someone says to me. Uhm that’s all nice and all, but I am loosing weight so rapidly that my organs are now in danger of failling. And they can’t figure out why.
“At least it’s not cancer” is again not making me feel any better.
6 months go by, and I weigh 45kg/99 lbs and I am 1.73cm/5 feet 7 I am very very underweight. Finally they figure out I have a bacteria causing all my issues and the road to recovery can begin. Yet again
What does the future hold?
At this point in time I think I have all my autoimmune issues and other health stuff under control. They are chronic, meaning they will never go away. The furture is uncertain, because we simply don’t know how my issues will progess with time.
I have new undiagnosed issues, like my teeth dissolving from the inside out. No idea why that is happening, but we’re trying to treat it.
I concider myself very lucky that I don’t have cancer. That is a fact. It’s also not what the article is about. My point is, there are things that are just as bad and deadly as cancer. And things that need to be treated the same way as cancer. The diagnosis “not cancer” isn’t always a good one. Please remember that when you tell your friend next time “At least it’s not cancer”
I have had stomach problems since I was a teenager, but I took me a until I was in my thirties to figure out the cause of my issues was actually Celiac Disease. As a teenager, I always had terrible cramps and acid reflux. By the time I was sixteen, my doctor put me in acid blockers to try to control my symptoms. I took the medicine every day for years and it helped, but my symptoms still persisted. Being that I was sixteen, the doctor’s attributed the cramps to my monthly cycle and figured the acid blockers would resolve the rest. But they didn’t. I eventually just learned to live with the symptoms and go about my life. I thought this is just how my life would have to be. After all, I was feeling better, just not good.
When I was about twenty, my cramps became even stronger and more frequent and I was having trouble coping with the pain. I once again returned to my doctor, and he suggested that I do an elimination diet to see if what I was eating may be contributing to my symptoms. He suggested I replace the multigrain bread I normally ate with plain white bread or spelt which would be easier to digest and that I should eat a lot of yogurt, which has good probiotics and is easy to digest. He also prescribed a medication to help with the cramps. I made the dietary changes, took the medication, and it helped a little, but I was still suffering.
It’s Hard to Work when You’re Chronically Ill
While I was trying to figure out the cause of my gastrointestinal issues, I was also working a full-time job at a call center. This was the type of job that required you to clock in and out every time you took any kind of break. Even if you were just going to the bathroom, you were required to clock out when you left and back in when you returned. My symptoms had gotten so bad that I would have to go to the bathroom six or more times a day and I could be in there for ten minutes each time. Well, my employer took notice of this and I was called in for a meeting. As much as I tried to explain that I was legitimately ill and couldn’t help it, all my employer saw was the time and my contract was not renewed. After about six months, this extreme flare finally calmed down. My stomach ache and acid reflux were just a part of my everyday life, but we’re not so bad that it was disruptive to my day or my life.
On Vacation, but not from my Symptoms
Some time passed and now I was about 26 and I went on a vacation to the Azores, Portuguese islands in the middle of the Atlantic Ocean. I looked 4 months pregnant! My stomach was extremely swollen and it hurt a lot. I had been been living on antacids and other medicines, but nothing was really working anymore. At the time, I thought my body may be reacting to the different foods I was eating. In this area, they tend to prepare everything using a lot of butter and I had stopped eating butter years ago, so I thought I must not be used to it anymore and that’s what was probably causing my reaction. I was convinced the butter was the cause of my problems. Even when I just ate a salad, which obviously had no butter, I still felt really badly. It was so extreme. I was only there for a week or two, but when I showed people pictures from my trip, my physical transformation was so drastic that people would ask me if I really was pregnant.
I didn’t know what was going on. As chronic illness life goes, you get some bad days, then you get some good days. Every year you have is different. Still, I was undiagnosed and I went on with my life. All the while, I kept taking stomach liners, acid blockers, and other medicines for my bowels. This became my daily regimen in order to live without constant abdominal pains and cramps.
Making Changes
Some more time past and now I was 31 or 32 years old. I started researching more into my health and looking into natural remedies and the holistic way of living. I wanted to change my lifestyle to try to feel better. I had stopped eating sugar years prior and it made me feel so much better, but I noticed after a couple of years, the effects of that wore off or something. I decided to make some other changes I hoped of regaining that feeling. I knew I had to do something drastic. That’s when I started the autoimmune protocol diet. For this diet, you cut out all sugar, lactose, gluten, rice, seeds, and beans and then slowly start reintroducing them back into your diet to see which ones are aggravating your body. For me, cutting out gluten was the hardest. I’d literally dream of bread and croissants and pizza. It was crazy!
After being on the autoimmune protocol diet for about 3 or 4 months, I really did start to feel better and I tried to introduce things back into my diet. During that time, I would get together with a group of friends monthly, and we would cook and eat dinner together. This day, we each brought something to be grilled and so we would all prepare the food and then share it amongst the group. One of my friends made something breaded. I don’t remember what is was, but it was being cooked on the same grill with everything else. As I was still not eating gluten, I did not eat the breaded food, but instead partook in the other options. but it was in the same grill.
By the time I got home and I was so sick! I got cramps and I had major brain fog. I couldn’t think straight. I was sweating profusely and was sick and exhausted for three days. I thought this was an extreme reaction, so I started doing research into what could have caused it. That’s when I discover the cross-contamination that can occur with gluten. Still, I was surprised that I had such a strong reaction. I learned that this is actual quite normal when someone is exposed to gluten after long periods of time without it.
My Daughter is Following in my Footsteps
About six months later, I noticed my daughter, who was about four at the time, was very tired and cranky all the time. She was a picky eater and would only really eat bread, potatoes, doughnuts, and of course candy. This seemed strange to me, so I brought her to he pediatrician thinking she may have picked up a bacteria or parasite somehow. We went to the doctor and had her tested, but the tests were negative for any bacteria or parasites. Still, I knew something had to be wrong, so I asked her doctor what else could be done. He told me there were two things we could try. The first option was to virtually turn her inside out running tests to look for anything and everything. Since she was still so young, her doctor thought that would be extreme. The second option was far less invasive. He suggested eliminating gluten for about two weeks to see how she responded. This made a lot of sense to me in light of my own experiences with gluten, so we decided to give it a try.
Going gluten-free was very upsetting to my daughter at first. She had seen the strict autoimmune protocol diet that I had been following and thought that was what she would have to do too. I explained to her that what she was doing was not nearly as strict. She would not have to give up everything, only the gluten. Over the next three days, we finished all the bread and doughnuts and other gluten-containing foods in the house and went 100% gluten-free. The rest of my family wanted to support, so they stopped eating gluten too so she wouldn’t feel so badly. Her dad, my mom (her grandma), and my sister (her aunt) all gave up gluten so my daughter wouldn’t feel alone.
After four days, I had a different child. She had energy and was not so cranky. I could hardly believe the difference! Just by not eating bread, cookies and other gluten-containing foods, I had my daughter back. I still let her have some treats, like cake, but she ate the gluten-free kind instead, as I wanted her to still be able to eat similar foods to what she was used to. After a month, we went back to the doctor to report how it had gone. The doctor said that her improvements indicated that she has celiac disease.
It’s in my Genes!
By this time, my daughter was feeling better and had gotten accustomed to eating the gluten-free foods, so my mom and sister thought it would be okay for them to go back to eating the regular bread and other foods they had given up to support my daughter, but their bodies had other plans. When they ate regular bread again, they got really sick. Unbeknownst to all of us, we all had celiac disease.
It all made sense now. As a baby, my daughter had the worst acid reflux. She couldn’t hold her milk down and she never wanted to eat the porridge. It was difficult to make her eat stuff because she couldn’t keep it down. Thankfully, now we know why. She had been diagnosed with celiac when she was 4 and now we know that it tends to run in the families.
Everything is Starting to Make Sense Now
It took me over 30 years to figure out that I have celiac disease. I believe that many of my autoimmune issues stem from me having undiagnosed celiac disease. Celiac disease is an autoimmune disease in which your own immune cells track the gluten enzymes within your small intestine. Your body is basically attacking itself. Looking at my timeline of all my diagnosis, I think this could be the cause of many of my chronic illnesses. I started having my Graves symptoms at 16, but I only got diagnosed at 19. Then at 28, I had Hashimoto’s Disease that went undiagnosed for about 6 years. After my Hashimoto’s diagnosis, I started having Raynaud’s disease, which is also an autoimmune disease that effects blood flow. If you don’t figure out what’s causing autoimmune conditions, they have a tendency to accumulate. Since I discovered my celiac disease so late, I wonder if that may have been the catalyst for my other conditions. I may never know.
I hope my family’s story helped you in some way. I know by sharing my experiences with my own family, my mom and sister have given up gluten and are now feeling better. It’s not for everyone though. Some people have experimented with going gluten-free to try to lose weight or think it’s the cure for any ailment, but it’s not. Going gluten-free is not necessary for everyone. If you think you may have celiac or be gluten intolerant, talk to your doctor and consider trying an elimination diet to find out. Some people can eat gluten with no problems, but for those with celiac, it is a real and serious autoimmune condition that effects their daily life and not just another dietary fad.
When you live with chronic illnesses, sometimes your body can react differently than the average person’s would under normal circumstances. This can not only be confusing to you, but also to the doctors or other medical staff you may encounter when trying to seek treatment and can effect the care you receive. I had an experience with this when I needed to have my tonsils removed.
I had my tonsils removed when I was 23. They had gotten infected and I went to the emergency room for care. At the time, I couldn’t open my mouth because the infection had gotten so bad. The doctor on call tried to force open my mouth and this caused so much pain that I literally passed out. However, he told my mom that I just fainted because I was scared.
Grave’s Strikes Again
Year prior to this, when I was about 19 years old, I was diagnosed with Graves’s Disease after years of experiencing a lot of vague symptoms that no one had been able to figure out before. When I was diagnosed with Graves’, I had to take a lot of medications, 13 pills, to treat not only the disease itself and it’s effect on the thyroid, but also to treat cardiac symptoms and to help with the side-effects of all the other medicines.
After about a year and a half in the medications, my Graves’ Disease went into remission, but my overall health had suffered from all the medication I had taken during that time. Sure enough, I had gotten very sick. I had double pneumonia that lasted about three months. It took a lot of antibiotics, but I eventually recovered. At this point, I decided that I really just needed a break, so I decided to take a semester off from University and went to Aruba for five months to just relax and recharge.
A Break From One Problem is the Start of Another
While in Aruba, I started getting horrible throat infections. My throat would be bright red with white spots and extremely painful. This was accompanied by a very high fever of 40* C (104* F) or higher. I had been to the hospital multiple times for it, about four times in a five month span, and each time I would be prescribed antibiotics, but it kept coming back. Part of the problem may have been that Aruba, while beautiful, is a very dusty island, and when you breathe in the dust in the air, it can irritate your lungs and tonsils, making it difficult for throat infections like I had to resolve.
After 5 months, I went back to Holland because my semester was starting at University. I just got my first apartment in Amsterdam and I wanted to get back. Over the next year and a half, I was still constantly getting these throat infections and had been on antibiotics at least seven times. The antibiotics would work, but not well enough, and my tonsils kept getting infected.
Operation Time
At some point, the doctor told me that he recommended having my tonsils removed. As I was still young, he said it would be a fairly easy operation, so considering all the problems I had been having, he thought I shouldn’t wait until I was older, as it’s a much harder procedure on older people. Apparently, they almost peel out on a young person, but with older people, they are attached more to the body and therefore the procedure requires a lot more cutting. I reluctantly agreed, as I was having these severe throat infections almost monthly by then, and decided to go ahead with the surgery.
The day of the surgery arrived. I am very sensitive to all medications, so I advised the doctors not to use too much anesthesia. I knew just a little bit will do the trick and told them they should start with a very low dose. Prior to the procedure, I had a meeting with the anesthesiologist. Thankfully, he really listened to me, which made me happy and more comfortable about the procedure. Sure enough, when the time came, they really did give me a very low dose of anesthesia. I know because I can remember them talking during the operation. I didn’t feel anything. I wasn’t scared. I just felt a really weird sensation like I was sleeping, but I knew I was awake. I could hear the people around me, but I could not move or wake up or do anything. It’s a really strange sensation.
I woke up after the surgery. Everything went well, but it took me a long time to recover. It took me about eight hours to wake up after surgery, whereas I was told that most people wake up after only four five hours. I was told that after I wake up, if I could eat some ice cream and go to the bathroom on my own, I would be able to go home to recover. But I just couldn’t wake up. I couldn’t eat the ice cream. It was about ten hours after the surgery before I could manage to do what they requested and was discharged to go home with my mom to recover.
I went home, but the pain was still so bad that I could hardly tolerate eating the ice cream or even drinking. This progressed, and after three days, I was in so much pain that I couldn’t even open my jaw anymore. So after three days I was in so much pain and I couldn’t really open my jaw anymore. I think it was a Friday evening, as I usually got sick on Friday evenings for some reason, and I called my mom and told her that I felt like I needed to go to the hospital.
A Rough Recovery
I felt very strange. I was in a lot of pain. I felt like I was floating and hallucinating. Something was very wrong. My mom rushed me to the emergency room and I saw a doctor. I’ve always been kind of jittery and anxious about anything hospital or doctor related, so I only go when I urgently have to. Well I was there and feeling anxious, but I was in a lot of pain and couldn’t really open my mouth, so I knew I needed to be there.
I told the doctor how I was feeling and that I couldn’t really open my mouth when he came to examine me. He didn’t take me seriously and thought I was being dramatic and exaggerating. I opened it as far as I could, but that wasn’t good enough. He told me to “ man up” and open my mouth properly, but when I was unable to do so, he took his hands and forced it open. This caused so much pain that I actually lost consciousness.
I woke up on the floor with a pillow under my head and my mom sitting next to me. There’s no doctor in the room at this point. I asked my mom what just happened. She knew the truth and was furious. Soon, the doctor came back into the room. He blamed the incident on me being scared and having and anxiety attack and then just walked away. I was stunned! I knew I had fainted from the pain and this doctor had the nerve to not listen to me and then blame it on anxiety. Just because I wasn’t screaming and carrying on, it doesn’t mean I’m not in pain. That’s something I wish people understood. When you have chronic illness or chronic pain, you tend to react differently to pain than most “normal” people. You can almost hide it and push through when other people would act like they’re dying.
Yet More Antibiotics
In the end, he gave me another round of antibiotics that I had to drink while my throat was infected and open after surgery. I can still remember the flavor and smell to this day, and if I smelled it again, I wouldn’t be able to take it because it was such a traumatic experience. The pain I had was the worst pain ever! It was even worse than childbirth! Drinking the gross antibiotics twice a day in my open , sore, infected, swollen throat was no easy task. They were a gross orangey flavor and I’d just drink it as quickly as possible while my entire head was wrapped in bandages and packed with ice. It was awful!
The antibiotics did help this time. It took me longer than normal to recover, but in the end, it was successful. To this day, I have never had another throat infection. And have only had sore throats maybe three times and they were nothing compared to the infections and fevers I had previous to the surgery.
Doctors, Please Listen to your Patients
While I must say the surgery was successful, this was just one of many stories of doctors who didn’t believe me or just didn’t take me seriously. Obviously, not all doctors are bad. There a lot of good doctors out there. This doctor probably meant well and really thought I was having a panic attack, but I would like to share this story for all the people living with a chronic illness and issues like these to know that these things happen everywhere. I also hope that some doctors will see this article and realize that what they do is very important. How they react and interact with patients and whether it seems like they believe them can make a huge difference.
I hope you enjoyed my crazy story about when I got my tonsils out. From this experience, I learned how important it is for doctors to listen to patients. It can make a world of difference in the patient’s outcome and, for doctors, can make a difference in their treatment plan and relationship with their patients. It is important to be your own advocate and speak up when something doesn’t seem or feel right. Especially when dealing with chronic illness or pain, what seems “normal” may not be, so we must advocate and educate on our own behalf’s to have the best possible outcome.
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.
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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!
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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.
Life Altered by Multiple Chronic Illness Diagnosis
Chronic illness has completely altered my life. I went from a two sport varsity athlete in high school to a person who functions at a pain level that would leave most people bedridden. Now life has been consumed by handfuls of pills twice a day, at least one doctor’s appointment a week, constant pain, exhaustion, and more difficulties. After struggling for over a year to get an accurate diagnosis I finally ended up with several: Rheumatoid Arthritis, Sjogrens Syndrome, Graves’ Disease, Fibromyalgia, and Irritable Bowel Syndrome.
Seeking Sobriety and Answers
I can’t tell you when the pain started. I spent years as a full time heroin addict, and while I was using I wasn’t in pain. But every attempt to get sober left me in agony even after withdrawing from the drugs; which only lead to relapse after relapse. Every attempt at sobriety would lead me to a different doctor for an answer, but every doctor assumed it was Post Acute Withdrawal Syndrome. I knew in my heart there was something seriously wrong, but I couldn’t find anyone who believed me. Eventually I managed to get sober and continued my fight for an answer to my pain. Every doctor I saw just assumed I was looking for drugs, even when I told them I didn’t want any narcotics. I went from doctor to doctor looking for someone who believed me and would help me finding an answer. I finally found one, over a year after I began my search. A few months later I got my answer. It came with a laundry list of health problems.
Chronic Illness Diagnosis Too Much to Bare
A few weeks after getting diagnosed with fibromyalgia and rheumatoid arthritis I landed in a mental hospital for a suicide attempt. I was so overwhelmed by the idea of dealing with pain everyday for the rest of my life that I assumed I couldn’t do it. I didn’t really want to die, I later realized, I was just afraid of a life of constant pain. Fear is a completely overwhelming emotion and I was terrified thinking of the kind of life I was being forced to live.
Struggling to Stay in School
Throughout all of this I struggled my way through college. I am currently studying the prerequisites to get into the nursing program. Just this past semester I developed a serious infection that was sensitive to only five antibiotics. As it turned out I was allergic to four of them. I spent weeks covered in a rash because of constant allergic reactions. I ended up with a PICC line to take the final antibiotic that would work, which was only available as an IV antibiotic. It took three weeks on that medication to heal. Thankfully it worked and I was finally free of the infection. But throughout all of that keeping up with classes wasn’t possible and one had to be dropped.
Immunosuppressant Therapy for Chronic Illness
Once I was free of the infection I could start my treatment for the Rheumatoid Arthritis- it was an immunosuppressant. This medication, which is also used in chemotherapy, makes me sick for at least one day, usually two. Once I realized this fact my mental health took another turn for the worse. This time going to the hospital was not an option. It was only a few weeks away from finals and past the date to withdraw from the class. The doctor upped the antidepressant which caused suicidal thoughts. I decided that if the next change my doctor made didn’t help I would take my parents wrath and go to the hospital for help. Thankfully the change the doctor made worked. I was no longer suicidal. The depression remained as a hard consequence of chronic pain.
Looking for Positive Side of Chronic Illness
Everyday is a struggle to keep looking for the positive when it all feels negative. Sometimes I think the light at the end of the tunnel is just a train that’s going to hit me at full speed. And sometimes that is what it feels like. But I searched for a group of people who understand the kind of struggles I have. Thankfully I found a few and began to make friends with others who have similar challenges. I began to talk to my family members who also struggle with chronic illnesses. I created a beautiful new relationship with my mother who struggles with almost the exact same situations as me. Anyone can find help through The Unchargeables Chronic Illness Support Group.
Chronic Illness Self Care
I realized that I can’t look at my whole life at once but instead I now try to take it a day at a time and go easy on myself. I can’t control what may or may not happen in the future, but I can control what I do today. And today I choose to allow my doctors to attempt to put my body back together while I focus on what I can do to better myself. I do what’s put in front of me: run the errands, study, go to appointments, and on and on. When things get overwhelming I do some self-care. It’s hard for me to do self-care because I tend to forget about it with everything else going on. I love taking baths and writing poetry and that’s what I try to do as often as possible. Life is still hard, but every day I do something, even if all I can do that day is get dressed. I’m grateful that today I have people in my life who understand my struggles and love me through them.
About the Author
Chris Thoman is 23 years old, a 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. You can follow Chris on Instagram at https://www.instagram.com/foreverandalwaysarebel/
For as long as I can remember there were little things wrong with me. I got the flu at least 6 times per year. My colds lasted from November until March every single year. I grew up with sharp stabbing pains in various parts of my body, they called it growing pains.
Growing pains
I remember clearly I was 14 years old and sat in class. All of a sudden I got such sharp stabbing pains in my upper arms that I fell off my chair. For the next years tests followed, but there was never anything found. The pain in my muscles was untracable.
The pains could not be classified as growing pains anymore, but since they were untracable it must probably be in my head. Teens have to carry around heavy backpacks filled with books all day. I was probably experiencing muscle aches and was overreacting…
No air
From the time I ws 16 I started having dreams where I was underwater and could not breathe. I felt myself slowly choking until I finally woke up and was able to get a big gush off fresh air into my lungs.
During most the day I was short of breath even though I was not moving. I always felt warm even in winter. When everybody was wearing warm sweaters I was walking around in my tank top.
I went to the doctor several times during the following year. In the end the doctor decided that it was all in my head. I was having anxiety attacks. I was very surprised because I had no feelings of anxiety. I just felt like I could not breathe. All the time…
I was sent to breathing therapy. I got one-on-one coaching on how to breathe, ground myself and relax my mind. I was told to breathe in a bag when I felt like I did not get enough air. Which was a strange suggestion since I felt I could not get enough air all the time. After a year of breathing therapy they decided I was cured. Although I could still not breathe properly…
It is all in your head
At this time I was so used to not being able to breathe in deeply that I hardly noticed anymore. I have been having the drowning dreams and shortness of breath for almost three years now.
When I was 19 years old I went on a holiday to Spain. My breathing started to get worse. I remember sitting on a bus and feeling like the bus was closing in on me. I could not catch my breath! During the day it slowly got worse untill I decided I needed a doctor.
The doctor came to the hotel room and checked me out. He told me all would be fine just take this pill. Turns out he gave me Valium. Because he decided my breathing issues were all in my head. Yet again…
Well, the Valium knocked me out for 2 days. I felt like a drugged up patient in a mental institution. You know the ones you see in movies that are not able to respond, just sit and drool. That was me. I could notice the world around me, but I could not respond to any of it. When I moved it went super slow motion, my muscles did not want to respond the way I wanted them to. I could still not breathe properly.
It’s not in my head?
Upon coming home I decided to take my symptoms to a doctor yet again. By this time I have seen at least 8 different doctors with the same symptoms. This doctor decided to just give me the biggest blood test possible.
Test results came back and it turns out everything looked fine but my thyroid was going a little too fast. Since I was so young, the doctor told me to see a specialist. I called the hospital and asked for an appointment. They asked me if it was urgent. I did not know actually, so I told her how the talk with my doctor went and they decided it was not urgent. I had to wait 4 months for my appointment.
Weird symptom summer
During the summer that I waited for my appointment with the thyroid specialist I started to experience very strange symptoms. The shortness of breath was always there and I was still always very hot. But I also started shaking. Eating soup was not possible, the soup would not stay in the spoon all the way to my mouth. Being 19 I laughed away my problems and patiently waited for my appointment.
One day I was working and my co-worker started laughing and told me I looked like a cartoon. I looked in the mirror and saw that she was right. I looked like a just swallowed a beach ball and it was stuck in my throat sideways. It didn’t hurt and by the end of the day the swelling reduced, so I just waited some more for my appointment.
The specialist
Finally the day of the specialist appointment came. The doctor called my name and upon laying his eyes on me he said: “I hope they sent you here as an urgent case!” I told him I just waited 4 months.
Before we even went to his office he took me to the cardiac department. I passed very old and grey people attached to IV’s. The doctor walked me straight to an empty room and hooked me onto machines!
Shocked much?! I knew it was not all in my head, even though people kept telling me that. But I did not expect this!
After hooking me to the heart monitor for 10 minutes he decided I was okay and we went to his office to talk.
More tests followed and the diagnosis was Graves’ disease. I had a pretty severe case where my heart was going at three times the normal rate. That was causing my shortness of breath. After listening to my story and realizing how long I have been walking around with these symptoms he told me I was lucky to be alive. A couple more months and I would’ve had a heart attack for sure.
19 years old and 15 pills per day
The medications started and a very difficult 2 years followed. I took 15 pills per day. 1 for my thyroid, 1 for my heart and all the others against the side effects of the first two pills.
I got “cured” of my Graves’ disease and was released from further monitoring. The doctor told me that 20 years in the future my thyroid would probably stop working sufficiently because of the medication I took. He told me not to worry, when that happens you just take 1 pill a day for the rest of your life and you will be fine.
Because I did not believe my doctors, because I trusted my body and what I felt, because I trusted my own judgement even at this young age I finally got my diagnosis. It was not in my head!
Many people, friends, family, doctors, therapists will tell you it is in your head. Invisible illness is invisible because we can not see. That does not mean it is all in your head. You can not will yourself to be better. Like I could not will myself to breathe. It was not anxiety it was my heart.
Never give up. Be your own advocate and keep fighting!
