We’ve all been there. Something goes wrong somewhere and it delays us being able to get the medicines we’ve come to rely on to make it through each day. Maybe it’s a problem with a doctor writing a prescription in time before you run out. Maybe you have the physical prescription, but the pharmacy it out of the medication and needs to order it. Maybe funds are tight, like they are for many of us, and you just can’t afford the medication. It could really be any reason, but most of us have had times when this has been an issue. So now what?
My medication nightmare began over a month ago. I live in the Canary Islands, near Spain, but I order the thyroid supplement I take for my Hashimoto’s through a company in the United States. Since it’s being shipped internationally and has to go through customs, I am always sure to allow plenty of extra time. I’ve never had a problem, until now that is. It’s been over a month and I still have not been able to receive my medication. No matter what I do, I seem to hit another roadblock. At this point, I’ve actually cancelled the order and attempted to reorder in hopes I won’t have the same issues, as I’ve never encountered this problem before, but only time will tell.
So what can you do if you run out of a medication? Hopefully, you’ll never be in this predicament, but if you are, here are some things to try.
First, try to avoid the problem. It happens. Many of us take multiple medications throughout the day. It’s easy to lose track of how many pills you need to make it through the week. You look at the bottle and think you’ll be okay, until, before you know it, you’re down to your last pills. If you can, try to order the medication before you’ll actually be out of it. This will also allow time for the pharmacy to order it if necessary. Some pharmacies have automatic refills to help with this, but a good way to ensure you won’t run out is to make a habit of reordering the prescription a week before the date it was last filled. For example, if you last filled your prescription on the 20th of the month, reorder it on the 13th of the next month. Set a reminder if you need to.
Second, pay attention to how many refills you have left. Often with chronic illnesses, you may take a specific medication for months or years on end. With the exception of pain medications, doctors will often allow multiple refills on a single prescription. Try to pay attention to this so you’re not trying to refill a prescription when no refills are available. Even when you or your pharmacist notices a new prescription is needed, the doctor’s office may not be able to fulfill the request immediately for any number of reasons. Therefore, it’s important to allow time for this. The one week rule from the previous paragraph works well here too. Ideally, you may have realized the need at your last appointment and requested the prescription then, but allowing the week buffer leaves enough time for your pharmacist to contact the doctor and the doctor to respond.
But what if you miscalculate or are even away from home and run out of your medication? Or maybe it’s a weekend and your doctor’s office it closed? There are a few things you can do. If you’re using your home pharmacy and have a history of taking a particular medication, your pharmacist may be able to give you an emergency supply of the medication, or just enough to make it through a couple of days until a prescription can be attained. You can also take the original bottle from the prescription into another pharmacy and, providing you have refills, the can fill the prescription or contact the prescribing doctor or even an on-call doctor when necessary. In a pinch, you may also be able to find a walk-in clinic and have the doctor there address your prescription needs.
Even with all of this in mind, sometimes life happens and you’re stuck without your meds. As a chronic illness sufferer, I know that with some of my medications, even just missing a single dose can make a huge difference. Then, of course, dealing with the resulting flare can be horrific and impact every aspect of life, from sleep habits, to brain fog, to eating, and participating in daily activities. This is the position I currently find myself in.
As I said earlier, I’ve been waiting for my thyroid supplement for over a month, but it’s caught up in customs. Initially, I tried rationing my medication to try to make it last longer in hopes that my order would arrive from the US. I would either take less doses each day or take smaller doses to stretch out what I had left. I figured something was better than nothing and really expected this to be a temporary situation. My body can definitely tell the difference. Even with the smaller doses, I was much more tired than usual, experienced more migraines, and just generally had more pain.
Now I’ve been without my medication for a while, and my body is not happy. I’ve become virtually dysfunctional. My fatigue is unending and the pain is unbearable. It’s hard for me to complete work, do household tasks, and even spend time with my daughter. All I want to do is stay in bed all day.
As much as I’d love to build a blanket fort and not come out until this nightmare is over, life must go on. For me right now, that means trying to organize my house and make it more livable as I’ve recently moved. I don’t feel well. Like I said, I’m exhausted, weak, and in pain, which is making it difficult to focus on even basic tasks. In the life of a Chargie, these factors can lead to disaster.
Not being able to take my medications has effected me in ways I would have never imagined. Recently, I was trying to make my house a little less chaotic and more settled after my move. I decided I would at least try to get rid of some of the empty boxes scattered throughout my house, as I thought this task required very little energy or concentration. Well, Things didn’t quite go as I had planned.
I was attempting to fold a larger box to get it out of the way. Like I said, I’ve been feeling weak and my dexterity is waning from being off of my meds for so long, so the box slipped out of my hands. I bent down to try to catch it, when SMACK!!! I hit my head on the corner of a cabinet. OUCH!!! As if I didn’t already have enough problems, I managed to give myself a concussion. Even the most menial tasks can require Herculean effort on a bad day. For more on this story, check out my YouTube video above.
Through all this pain and aggravation, I did learn a few things. First, plan ahead. Normally, I do this, but this time it wasn’t enough as my meds are still being held hostage. Maybe now I know that what I thought was more than sufficient time may not be. Second, have a Plan B. In my case, there’s really not much more I could have done for this particular medicine, but it’s good to know alternatives if you do find yourself out of a medication. Panic and stress will only make everything worse. Most importantly, if you do find yourself in this situation, be gentle with yourself. If you are already in a vulnerable and weakened position from being without your meds, pushing yourself will generally make you feel worse. While yes, life has to go on to some extent, pick and choose your battles so you don’t make your flare worse than it needs to be. Everything else will still be there when you’re feeling better.
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’re chronically ill, it can be very easy to lose yourself in feelings of low self-worth and self-pity, and to generally feel depression and despair. Often we lose the ability to do what we once could and just getting through each day can be a challenge. You tend to focus on what you are no longer able to do or what other people who are healthy can do. Even though you are sick, you can still try to focus on the positives or things you can do in order to live your personal best life. In our community, these small celebrations are called, “Chargie Wins”.
The Power of Positivity
I tend to be a very positive person by nature, so I subconsciously tend to find these “Chargie Wins”, even when I’m having a really bad day. Like I said, it can really be anything meaningful to you that you’ve been able to accomplish during a given day. For example, I have not been feeling well for the past few days. I canceled all of my plans and got no work done. Yesterday, I was finally able to take a shower and wash my hair and today I straightened my hair and did my makeup to record a video. To someone without chronic illnesses, these are things they take for granted that they are able to do everyday, but for me, these are Chargie Wins.
Do Unto Others
As I said, I have not been feeling well and have been in bed for three days. It’s very easy for someone to feel down under those circumstances. When people don’t feel well physically, it can also effect how they feel mentally or emotionally. When this happens to me, I find it helpful to focus on the positive. Something that always makes me feel better is helping other people. I’ll go to the Unchargeables Instagram account or Facebook page and read through the posts and try to give other people advice or encouragement. It can also be a good distraction from whatever I may have going on. I’ve found that when I support others, they return the support when I need it as well. It can even help to know that someone else relates to what you are going through. This also helps me to feel productive and like I’m doing something good in the world.
I also enjoy looking at the Facebook and Instagram accounts for another reason: other people will share their Chargie Wins. This can be a good reminder to celebrate the little things when it doesn’t seem like there’s anything worth celebrating. It’s also a reminder that everyone has their own challenges and good and bad days. Sometimes it just gives me a gentle reminder to stay positive and tomorrow can be a better day.
The Path to Acceptance
At times, my health will not allow me to be on the computer or use screens. Since so much of my work for the Unchargeables requires being at the computer, these days can be difficult for me. I have learned that I just need to accept this and hope that things get better, but for now I have to just do whatever I can do. On days like this, I will practice self-care and do things like listen to podcasts, cuddle with my animals, or spend quiet time with my daughter instead. Life with chronic illness is unpredictable. You never know how you will feel from one day to the next. That’s why it is important to set realistic goals for yourself and manage expectations. With this comes acceptance. For me, acceptance means that today was a bad day so I didn’t accomplish everything I wanted to and hopefully tomorrow will be better.
My capacity for acceptance was challenged during my recent move. I had planned out my entire week. I told myself I was going to do a certain amount of work and packing each day in order to meet my goal in time for my move. Well, that’s what my mind said, but my body had other plans. When the first day of packing came, I was physically unable to do it. I thought, well, it’s not a big deal. I’ll just do more tomorrow. Tomorrow came and I still was not feeling well enough to do anything. The same thing happened the next day. Part of me wanted to scream! My plan did not work and I was off of my schedule and still had so much to do. I calmed down and realized that there was really nothing I could do about it. That was something I had to accept. I would get everything done at my own slower pace as I was able. Sometimes you have to amend your expectations to fit circumstances you cannot change.
It’s Hard to be a Mom
Another area of my life where acceptance comes into play is when trying to raise my daughter. Being a chronically ill mother is the worst! I often feel guilty for not feeling well enough to play with her as much as she would like. I can’t always take her to the park or the movies or even just outside to play. My body will not allow it. I feel guilty for not being able to do some of the things parents who don’t have chronic illnesses can do with their children. It’s hard, but I’ve learned acceptance in this area of life too. On my bad days, I’ll try to do things like cuddle with her and watch a movie or even reading stories.
I’ve also accepted that I need help sometimes. I have told the other kids’ parents that I’m chronically ill. I will plan play dates for her with other kids so that she can still have fun even when I am not feeling well enough to play with her. I have told the other parents about my illness so that they can not only be there for my daughter, but myself as well. Everyone needs help sometimes, but when you’re chronically ill, having that support system becomes even more important.
There’s Always Tomorrow
I’ve learned that the biggest part of staying positive when living with a chronic illness is to manage expectations. For many of us, those expectations are drastically different from those which we had for ourselves prior to becoming chronically ill. Instead of focusing on what we used to do or can no longer do, it it important to shift attention towards the victories we can attain. These Chargie Wins, though they may seem minor to those who are not chronically ill, should be celebrated for the accomplishments they are. Furthermore, even if something did not work out quite as we would have liked, accept that it may not be able to be changed, but know that tomorrow is another day.
I didn’t know I had celiac disease, also know as a gluten allergy, until about six years ago, and now I have to be careful eating everywhere I go. Gluten can be anywhere, even hidden in places that you wouldn’t expect it to be. I have had to become a food label detective in order to keep myself as well as my daughter safe. When you have a gluten allergy, or any food allergy for that matter, there are some things you need to consider in order to remain safe.
Think and Prepare Ahead
Recently, I was visiting my friend, Hemme in her home. She knows me very well and is aware of my dietary restrictions, so prior to my visit, she asked me for a list of foods that will be safe for me to eat during my visit. I sent her a list of foods that are generally okay for me to eat, and she actually did a great job accommodating my gluten allergy. Even still, I nearly had a reaction.
She was preparing fish with a breading and thought that she could simply make mine without the breading and I would be fine. What she didn’t realize is that by having the fish on the same tray or even in the same vicinity, cross-contamination could occur. This is a huge problem people with gluten allergies commonly encounter. She was really happy I caught her and called this to her attention before I got sick, but such realizations are not so easy when dining out in a restaurant.
Then, Hemme was going to prepare some pasta. I eat lentil pasta because I can’t have the corn or rice that is often in other kinds of gluten-free pasta. She consulted the list I had sent her prior to my visit and bought lentil pasta for me to eat with my fish. Hemme bought frozen lentil pasta instead of fresh or dried. I read the package and sure enough, it contained cornstarch and rice flour, so I could not have that either. Sometimes things that seem like they are safe at first glance really aren’t.
The Packages are Lying!
I’m sure we have all been to the grocery store and have gotten lured in by all the different packages. We look at the front of the package and pick which variety of a product to buy. It may list a few key ingredients and maybe some nutritional information, but that’s just the beginning of the story. In order to get the full picture, you have to turn the package over to the back. That is where you’ll find the rest of the information: all the ingredients and nutritional information.
Sometimes, you even have to be a scientist or detective to find out exactly what you are eating. Especially with more processed foods, ingredients may go by different names or contain additives to make foods shelf stable for longer periods of time. Sometimes you almost need to recognize the elements of ingredients or certain key words to know if something is safe to eat. It can be very deceiving. For example, something that does not typically contain corn may use corn syrup as a sweetener. If you can’t have corn, then you also can’t have corn syrup or corn starch, and therefore this product is unsafe to eat.
The Dangers of Cross-Contamination
My daughter also has celiac disease. I have to educate people as to what is safe for her to have when I am not with her. She went to my friend’s house one day to play with her daughter. I’ve eaten there many times before and have never gotten sick, so I thought she would also be safe eating there. My friend is always very careful about how she prepares food, but she had gotten her some fries from a takeout place. Well, later that night, my daughter wasn’t feeling well and I recognized her symptoms as a reaction to gluten. I was really surprised. I thought maybe I hadn’t cleaned the oven well enough after my boyfriend used it to make regular (non gluten-free) bread. I questioned my friend about what my daughter ate when she was with her, and she told me about the fries.
What my friend didn’t understand at the time is that even though the fries themselves might be safe, if they are fried in oil with other things that contain gluten, this can cause cross-contamination. That’s why when we go out to eat somewhere, we have to be sure that if she orders something like fries, they are the only thing the oil is used for. The restaurant using the same oils to fry something like chicken nuggets can result in an allergic reaction. Similarly, cooking areas and utensils need to be sanitized or designated as for gluten-free use.
Allergy Vs. Intolerance
Some people may not have a true allergy to gluten, but are rather just gluten intolerant.
When you’re gluten intolerant, you may get sick when you are exposed to gluten. Your stomach may hurt, or you’ll feel tired and just generally may not feel well. With a gluten allergy, also know as celiac, your body will actually attack the enzymes of gluten within the body creating an autoimmune response. This can often lead to other health issues as well. While not confirmed, I suspect that some of my other health issues may actually stem from having celiac disease and eating bread and pizza for 30 years.
Gluten is Everywhere!
Gluten is a group of proteins, termed prolamins and glutelins, stored with starch in the endosperm of various cereal grains. It is found in wheat; barley, rye, and oats as well as products derived from these grains such as breads and malts. It’s is found in many of the most common foods we all enjoy eating and can be very difficult to avoid. It’s in breads, cookies, cakes, pizza, cereals, and many other places that you wouldn’t suspect.
You always have to check the back of the package when you are trying to avoid gluten because, like I said before, the front of the package lies and the back of the package actually tells you what’s inside. You have to make sure that it says that it doesn’t have any wheat or wheat derivatives in it and that it actually says, “gluten free”. Gluten can be in unexpected places, even in foods you’d think would be safe, like chocolate or hamburgers. It is necessary to become a food detective and read what exactly goes in to a given product. This can be tricky as it can vary by brands of similar products and even by different varieties of a particular brand.
While I focused on gluten allergy and intolerance, as that is what effects my daughter and me, the same potential dangers exist when addressing any food allergy or sensitivity. Always consult the back of labels when addressing any food allergy or sensitivity. Even things that appear safe at first glance may not always be. Beware of cross-contamination. Taking these steps will help keep yourself and your loved ones safe and free from food-related reactions.
Have you ever felt so exhausted that you just can’t seem to regain energy no matter how much you sleep or how balanced your diet is? If so, you may be experiencing adrenal fatigue. Adrenal fatigue is when the adrenal glands are exhausted and unable to produce adequate quantities of hormones, primarily cortisol, due to chronic stress or infections. Adrenal fatigue is a term to encompass a collection of nonspecific symptoms, such as body aches, fatigue, nervousness, sleep disturbances, low blood pressure, and digestive problems that can occur when adrenal hormones are insufficient.
I’m so Exhausted!
I’ve experienced adrenal fatigue numerous times. In fact, I am currently experiencing an episode and am actually annoyed with myself for not realizing and treating it sooner. I have been exhausted, but more so than my normal exhaustion. I wake up exhausted and there’s nothing I can do to regain energy. I am dragging all day, but then very awake at night and cannot fall asleep. My eyes, hands, and feet get very swollen and puffy. I also get intense salt cravings where all I want to eat is salty chips and popcorn to satisfy this craving. I actually went to the grocery store this morning and wanted to buy a bag of chips to eat for breakfast. That’s how intense my salt cravings can be.
You may be wondering how I figured out that all of these symptoms were actually because of adrenal fatigue. Years ago when I was diagnosed with Hashimoto’s, I was also tested for adrenal fatigue, but I did not realize that at the time. I was not diagnosed with Hashimoto’s in a typical way, but rather as the result of my own detective work and with the help of a nurse practitioner I had met through a Facebook group at the time. I had some labs done locally, and she helped me interpret them and I eventually flew to see her in California for further testing and diagnosis. It was during this visit that I did a spit test for cortisol and my adrenal fatigue was detected.
The Answer’s in my Spit!
During the spit test, you collect samples through a 24-hour period in order to see how your cortisol levels change throughout the day. My test came back that my cortisol in the morning was super high, but then be completely depleted and eventually spike up again. It was all over the place. I found out that this is what what causing my salt cravings and irregular sleeping patterns.
By the time I knew it was adrenal fatigue, I was happy that it had a name, but still didn’t really understand how having the diagnosis would help me get through it. With the help of my nurse practitioner, we figured out a regimen that works for me.
She told me to start drinking “adrenaline cocktails” and instructed me on how to prepare them. She said to mix orange (apple or cranberry) juice (preferably, fresh-squeezed, but packaged it okay) with ½ to a whole teaspoon of salt and ¼ to ½ teaspoon of cream of tartar and then to drink this concoction. The juice provides a quick source of sugar and nutrients, the salt, sodium, and the cream of tartar, potassium, which tend to be lacking during episodes of adrenal fatigue. This cocktail allows all these things to be replaced quickly.
Mmmm….Adrenal Cocktail
I know what you’re probably thinking: Gross! Who could actually drink that concoction and not get sick? That’s actually a good way to figure out if you have adrenal fatigue. If you suspect you have it, make the cocktail and take a sip. It it actually tastes good to you, you most likely have adrenal fatigue. If it tastes very salty and disgusting, then something else is likely causing your fatigue. Obviously I’m not a doctor, but this is just an at home test that you can try yourself. If you think your suspicion may be correct, contact your doctor and request the spit test to have it confirmed.
Replace and Restore
I usually drink the adrenal cocktail right away when I wake up, as that is when it will help balance the adrenals and give more energy. I few minutes later, I already feel a little better, as if I have just taken a nap. I feel more rested and like I have more energy. Depending on how bad your adrenal fatigue is, you can drink this cocktail up to three times per day. Since I may not know when I’ll have an episode, I usually carry packets of salt with me when I’m out and about and then buy some juice and mix it in. For me, it a very efficient way to balance my adrenals and restore energy. The effects usually last a couple of hours, so it allows me to continue going about my day.
Another supplement that I take to help balance my adrenals is called Ashwaganda. Initially, I didn’t think it was helping, but took it because my nurse practitioner advised me too, but when I stopped taking it for a couple of months, I actually noticed a big difference. I also take B supplements, specifically, B6 and B12, because they help with your adrenals and provide energy. For me personally, I also take supplements to help balance my thyroid antibodies, as they are very high as a result of my Hashimoto’s. This supplement is called Tythrophen PMG. Using this helped decrease my thyroid antibodies, which calmed my body down and made my adrenals not have to work as hard anymore. This combination really helps me recover from episodes of adrenal fatigue.
The final tip I have was also recommended by my nurse practitioner. Before I go to sleep every night, I take 150 mg of magnesium. It helps with sleep as well as helps regenerate your muscles, which also benefits my fibromyalgia. It can also help with migraines, so when I am experiencing a migraine, I will actually increase my dose.
Finding Balance
Through the years, I have learned to recognize when I’m having an episode of adrenal fatigue. When I went to the supermarket this morning and bought the bag of chips again intending to eat it for breakfast, I was able to stop myself. I told myself the adrenal cocktail will be better as that will actually help me rather than just trying to fulfill a craving. I’ve learned that intense cravings like this are often because your body is trying to fulfill a need for something missing, in my case, salt and potassium due to adrenal fatigue. When something doesn’t feel right in your body, there is usually a reason. Sometimes it’s necessary to do some detective work to find the cause and give your body what it needs to function at its best capacity.
When you’re living with chronic illnesses, some days you’ll find that it’s just too difficult to get up and go to what most people would consider a traditional job. Recently, I had a very trying flare. I would be up until 3 AM and then somehow need to be able to function at 6:30 to get my daughter ready for school. It was all just too stressful and too much for my body and mind to handle. This would happen too often, and unfortunately, my employers would not understand what living with chronic illness is like. Time after time, this pattern would cause me to lose my job.
That’s why about seven years ago I started marketing online. I did different things. I did affiliate marketing, where you will promote someone else’s product for a commission. I did advertising and had an advertising company where I helped small businesses advertise online. About 4 years ago is when I started with the Unchargeables community and began making the T-shirts and other products. I really LOVE this work, but unfortunately, it doesn’t pay my bills completely, so I’ve had to come up with other sources of income.
Survival Mode
Chronic illness has a way of turning your entire world upside down. It can often render people unable to do things they once were and force us to make very difficult choices. For many of us, it becomes impossible to continue to hold a full-time job, if we are able to work at all. This can greatly add to the day to day stress we feel in the overall struggle to survive. For many of us, not working at all is simply not an option, particularly as we endure the long and painstaking process of applying for disability benefits, which can often lead to rejection and reapplying. The process can take years. So what can someone with chronic illnesses do in the meantime to survive?
Time for a New Plan
Working from home is optimal for people with chronic illnesses who still need to work as it often can provide for a flexible schedule and work environment and eliminates an often long and stressful commute. As the founder of the Unchargeables, my main source of income come from the associated shop. Obviously, this is not an option for most people, but you can take the concept and apply it to your own skills. If you’re crafty, you can create a product or craft and open up your own shop on venues like Etsy or Amazon. A big help for me in my business is Clickfunnel, a software which helps structure and manage online businesses. This would allow you to use your skills at your own pace and bring in some income.
Harness Your Skills
Another source of income that I’ve come to rely on is that I’m a freelance translator. I have started doing this in the past year to help supplement my income. It allows me to work from home and at my own pace. I have also taken consultation jobs using this skill. Whether it’s translation or something else, find a skill you possess and offer you services as a consultant. Perhaps you had to leave a full-time job due to your illness. Find a way to harness the skills you used and offer them for consultation. For example, if you were a teacher, tutor or write lesson plans. If you worked with computers, offer technical support. Almost any career has a skill that you can offer to provide consultation for if you break it down into its elements.
Sell Yourself!
When you’re chronically ill, you’ll find much of your life is spent in survival mode. It becomes so important to minimize physical, mental, and emotional stress, which are inherent with many traditional jobs. Just as you devise creative strategies for things like self-care and completing daily tasks, it becomes necessary to be creative to earn an income. Sell yourself! You are a valuable commodity with a lot to offer, even if it’s not how you originally planned.
It’s “just a headache”, right? How could something that millions and millions of people get every day have such a huge impact on my daily life and ability to function? Well, it’s not “just a headache”. It’s a migraine and it has the ability to turn my world upside down and make it nearly impossible to do even simple everyday tasks. When I have a migraine, it completely stops me in my tracks.
Through the Tunnel, I Saw the Light
I started getting migraines about ten years ago, although at the time, I had no idea that was what I was experiencing. I was still working a corporate job at the time and started having tunnel vision seemingly out of nowhere as I was working at my computer. I could see things in the middle or right in front of my face, but the surrounding areas were dark. I must not have looked right either, as my coworker asked me if I was okay. I literally thought I was going blind.
My boss sent me to the doctor to try and determine what was happening. I explained what I was feeling and the visual disturbance I experienced to the doctor, and was told I was experiencing tunnel vision. The doctor explained to my that this can be a common occurrence prior to a migraine. This was surprising to me as I had never had a migraine before. Sure enough, a few days later, I got my first migraine.
Identifying My Triggers
When I first started getting migraines, they were no where near as severe and debilitating as they are now. Through the years, I have been trying to figure out my triggers, or what may be the cause of my migraines, but have been generally unsuccessful. Common triggers can be anything from smells to foods to sounds, stress, and even medications. I knew if I figured out what was causing my migraines, I might be able to prevent future attacks.
About four years ago, I was able to determine that eggs are a trigger for me. I completely eliminated eggs from my diet and was successful in avoiding having a migraine for about a year and a half. I was so excited to finally be free of the pain and other symptoms that would take over my life for days at a time. Much to my chagrin however, my migraines returned earlier this year.
The Flare of Flares!
I had travelled abroad earlier this year to facilitate Unchargeables Meet-Ups. The stress of traveling triggered a flare of my autoimmune conditions and, I believe, also triggered the return of my migraines. That was about five months ago and my body is still trying to completely recover. Stress can exacerbate many chronic health issues. Although I’m not currently experiencing acute active stress, as I did when I was stranded, I have chronic stress in my life, which definitely impacts my overall health.
I am currently experiencing my second major migraine flare of the year. My last flare lasted about nine days. Hopefully, this one won’t last quite as long. This is the second time this year that I have a migraine.
My Migraine’s Split Personality
I’ve noticed my body had two ways it tends to cope with migraine flares. The first way is to just sleep it off. I’ll be constantly exhausted and basically sleep until it’s over. I actually prefer that. While I’m obviously not productive while I’m sleeping, that’s the worst of it. When I wake up, the migraine is gone.
The other way my body responds is to do the exact opposite. Unfortunately, that’s how my body is responding to my current migraine. I can not sleep and I’m exhausted. I also can not really do anything else. I just have to lay in a dark and quiet room. I am unable to look at a screen (so no computer or TV), and cannot even talk most of the time. At most, I may have short periods of time when I can tolerate a phone call or talk to my daughter or boyfriend, but I just need to have silence most of the day. I can’t even walk my dog. It’s pure misery!
During these migraines, I’m also extremely sensitive to outside stimuli. Lights, sounds, and smells can all make my symptoms worse and increase the duration of a migraine attack. I am very nauseated. I have to wear sunglasses inside because even the light from a lamp is too much for my sensitive eyes right now. I cannot even tolerate a shower because just the water hitting my skull aggravates my migraine symptoms. My head is pounding, I’m nauseated, and I have a ringing in my ears. There is nothing I can do at this point but just lay in bed and wait for the migraine to pass.
Coping Strategies
If you’ve ever experienced a migraine, you know how debilitating it can be. I’m sure you’d agree with me that you would do just about anything to make it go away, or better yet, to avoid getting one altogether. I do not take any medications for my migraines, as I have not found any that actually work for me. So what do I do when I get a migraine or feel one coming on? Here are some tips I’ve learned through the years to help when I migraine strikes.
First, it’s very important to stay hydrated. This may help prevent a migraine as well as alleviate some symptoms. The best thing to drink is water, but some people report caffeine can help lessen their symptoms. Severe dehydration can actually cause the brain to pull away from the skull, thereby causing a headache. Dehydration headaches can occur at any time, but are especially common during the summer or in warmer climates, such as the case where I live.
I also take extra magnesium when I’m fighting a migraine, but I’m not positive if it actually works. It was recommended to me by a friend, so it has become part of my migraine maintenance routine. I take double the dosage when I’m actively experiencing a migraine. One study, however, actually found that regular intake of magnesium reduced the frequency of migraine attacks by 41.6 percent. Other research has shown that taking daily magnesium supplements can be effective at preventing menstrual-related migraines. Magnesium oxide is most frequently used to prevent migraines.
Be Kind to Yourself
My next self-care tip is to rest as much as possible. Your body needs rest to recover from this attack on the body. Migraines are exhausting! Like I said earlier, during some of my migraines, all I can really do is sleep, while during the other, my symptoms will not allow me to sleep. Even when I cannot sleep, it is important to rest. I try to do this by unplugging and eliminating external stimuli that may further aggravate migraine symptoms. I avoid light and sounds and just lock myself in my bedroom with the curtains closed all day.
Another thing I’ve found helpful in dealing with migraine symptoms is massaging peppermint oil on my temples and in the back of my neck. Peppermint oil contains menthol, which can help muscles relax and ease pain. This is usually most effective for me either when the migraine first starts or when it is about to end. If my migraine is severe, the relief is very short-lived, only about ten minutes, but I will take any relief I can get.
With my most recent migraine, I decided to try something new. I have been experiencing a stiff neck, which I don’t actually get with every migraine. I have been using a CBD-infused muscle rub. I have been massaging it from about the base of my skull though my upper back and have actually noticed some relief. Some people also receive relief from cold compresses on their head, neck, or back, but I personally have been hesitant to try this because of my Cold Urticaria, or allergy to cold.
It’s Not “Just a Headache”
Managing migraines, as with any chronic condition, can be very challenging. I hope you can relate to my experiences and find my coping strategies helpful. Like any condition, people may respond differently to stimuli and treatments. It is important to try to identify your triggers and have treatment protocol in place for when a migraine strikes. Migraines are not “just a headache” and treatments can be just as complex and multilayered as the condition itself. Hopefully, I have helped you identify some strategies that may be useful to you in your quest for relief.
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.
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.
