Enjoying Hobbies Post-Diagnosis

            There are many things that occur after becoming sick, some of them are immediate, and some of them take longer to digest. One of the things that took me longer to digest was my newfound lack of hobbies. Before becoming sick, I probably would have told you I didn’t like to do anything. This was partly because I was a 16 year old, and partly because I honestly just never paid much attention to the things I did enjoy doing. Ironically, I was one of the few people who enjoyed exercising. One of the elective classes I took in grade eleven had been completely devoted to working out; pilates, yoga, aerobics, cardio, and everything else. We had dance instructors come in, mock boot camp work outs, mini marathon training sessions, field trips to hot yoga studios, and more. By the time twelfth grade started, I was sick.

            A lot of the other hobbies I had included being active as well. I really loved walking; long walks, and I walked as quickly as I could at all times, to all places. I also liked running once in a while. I never went for runs alone, and never really picked it up, but I secretly enjoyed running around the track before class as a warm-up for gym. It was my favourite. I also loved swimming, but about 20 minutes in I’d always turn blue and be unable to stop my shivering. I could never understand why before. I also loved brain teasers, whether it was a trick question, or just finally figuring out my math homework, I loved challenging myself to learn more and expand my thinking.

            Those might not seem like very tough hobbies to lose, but for me, they were all I had in the end. To be quite honest, I didn’t even realize I was giving them up at the time. I just knew I was too sick to do anything, and I was focused on fixing that. At some point, it occurred to me that maybe I wasn’t going to be fixed. Around that point, it also occurred to me that I’d have to find a way to continue living my life, and that it would have to be completely different from everything I knew if it was going to be successful. So I started finding new things to occupy my time, when I had the energy to do them.

            The first thing I started doing was completely incidentally. I had just made a new friend, and the day after my birthday, her and her father took me for a quiet drive through the countryside. Both her and her father had an interest in photography; they had a good eye for unique shots. She let me borrow her camera for the day, and essentially I just fooled around and took photos of whatever I found interesting. At the beginning of the day, I had no idea what I was doing or what I was getting into. By the end of the day, I was completely in love with photography. I had taken a few shots that I just absolutely loved, and this was surprising to me. In tenth grade I had taken a photography class, and barely passed. I had no interest in it. Two years later, there I was, dying to get out and take more photos.  Now, I collect each and every photo opportunity I can. This is a hobby I hope to someday turn into my career, something I can do mostly from home, and something I can express my creativity through and still potentially make some money off of. I don’t expect much out of it; honestly, I just think it’s better to be working towards something.  

            The second hobby I developed is really more of a passion. I was enrolled in fashion twelfth grade for my elective. Unfortunately, this was the year I got sick, so I attended maybe 15 classes the entire year. Do you know what you learn in 15 classes when the program is 10 months long? Not much. I did, however, happen to make a dress and learn the basics of a sewing machine. I did all of this at home, with no instruction, and no idea what I was doing. Despite how I made that sound, I still have absolutely no idea what I’m doing when it comes to sewing. I do, however, absolutely love fashion sketching. (No, I’m not any better at that either, although croquis help exponentially). Eventually I ran into online courses, where I took grade eleven fashion and grade twelve fashion separate semesters. This is where I learned about inspirations, croquis’, fashion lines, famous designers, influences, forms, shapes, fabrics, and more. Now, when my hands/wrists aren’t in too much pain, I sketch for as long as I can remain focused on the task. I now have two binders full of sketches that I hope to someday turn into outfits. My favourites are dresses.

            Another hobby I’ve really come to love is planning and/or designing. This is probably because I’m somewhat of a control freak, and since becoming sick, I’ve learned there is not much left in my control. As you can imagine, this stresses me a little. So here I am, now willing to plan or organize just about anything, because it fulfills me to be able to turn nothing into something, or organize chaos and provide peace for somebody. Currently, I’m planning one of my closest friend’s baby showers. (And I’m honestly probably going overboard, but hey, that’s what I’m here for). This is also another hobby I’ve considered turning into a career. I decided at some point that if I ever get healthy enough to hold a job down, or attend college, it will be for business and event planning. Should things go really well, I’d love to own an event planning and photography business someday. Wishful thinking.

Now, with those listed, there are some hobbies I had before that I’ve had more time to pay attention to now. Mainly, reading and writing. As you can clearly tell, I’ve started a blog. For all of my posts combined, including this one, that totals 11,436 words, or 54,040 characters. (Did your eyes just get as tired as mine did?) Aside from this blog, I read. A lot. In the past 8 weeks or so, I’ve read 11 books. I’m currently on the 12^th. (Books are all listed below). Assuming I finish the 12^th book this week, that will be a total of 4,992 pages. Or, approximately 624 pages a week. (Honestly, do I not have anything better to do?) (Not really). See, the trouble with me reading is this: once I start, I cannot stop. At least, not until there is no more book to read. But then once I finish a book, I want to keep reading, so I just find another book to read. And so on and so forth. That is how I managed 4,992 pages in 8 weeks. Do I get a ribbon yet? (Totally kidding.)

·         City of Heavenly Fire by Cassandra Clare

·         The Infernal Devices Trilogy by Cassandra Clare
- Clockwork Angel
- Clockwork Prince
- Clockwork Princess

·         The Fault in Our Stars by John Green

·         If I Stay by Gayle Forman

·         Where She Went by Gayle Forman

·         Looking for Alaska by John Green

·         Thirteen Reasons Why by Jay Asher

·         Before I Fall by Lauren Oliver

·         Paper Towns by John Green

·         An Abundance of Katherine’s by John Green (currently reading)

This summer, I happened to step out of my comfort zone, and coincidentally, found I have another hobby: modeling. Now, this is not a hobby I ever anticipated myself enjoying, and it did not start out smoothly. I absolutely do not call myself a model, and I don’t think I ever would unless I was legitimately making money off of shoots and/or signed by an agency, something I have no intention of pursuing. However, in May, a local boutique named Gloss ran a competition called Gloss Top Model. This is something they’ve done every year since 2011, and every year I’ve watched with excitement and voted for my favourites.

                                             

Rowena Rodrigo Photography

I can only assume I was experiencing some kind of crazy fever that took over me when I decided to put myself in the running, but somehow it worked out for me. I made it through to Gloss Top Ten, and I was honestly terrified. I told myself when I entered it was all for fun, and I tried my hardest, but I told myself I wouldn’t get anywhere. So I didn’t prepare. Then I received a message after the interviews, telling me I made the top ten and group photos would be two days from the day I received the message. I told myself it wouldn’t be a big deal because I knew the photographer, so it would just be like hanging out. And to a point, it was. Except there were nine other absolutely gorgeous girls there (including Gloss Top Model 2013) and I couldn’t help but feel like I totally didn’t belong.

Natalie Brenner Photography

Things got worse when I realized I actually had to pose in front of these beautiful women, and even more humiliating when I learned pretty much all of them had previous modelling experience. I had my first “real” shoot shortly after that, and I have to credit the photographer for making me feel comfortable in front of the camera. We spent probably two hours just “hanging out” and I can honestly say I love each and every photo she took of me. I was stunned when I saw them – since when could I model? Needless to say, there have been a few shoots since then, and each and every one has just been more fun. I even find myself relaxing and laughing during photos now, whereas before I was super stiff and closed off.  To my awareness, Gloss will be picking their winner for 2014-2015 in October, and while I don’t think I’ll be advancing, I had an incredible experience and I would definitely do it again.

Model: Aleia Ally, Chung Photography

To sum up this post, I really just wanted to help out the rest of you who may be in a rut currently. I know there was a time, and still many times I find, where I feel as if there’s nothing I’m doing and that I’m not succeeding in anything. I want you all to know that isn’t the case at all. Each and every one of you is succeeding at being alive, and that is so much harder than we give credit for. On top of that, each of you has your own skill set and goals for life. Every day I try to participate in at least one of my hobbies, whether it’s taking a walk or just reading a book. (Walks to the kitchen or bathroom, totally count). I encourage all of you to find a hobby you can continue learning about over the years and something you can grow through.

Rest easy spoonies, xo.

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What The Hell is POTS?

            Recently, this question has come up many times for me. Okay, maybe not this question exactly but the look on their faces really says it all. Whenever I tell someone who has never heard of POTS that I have a condition called POTS, they all look at me with the “What the hell is POTS?” look on their face. Granted, many of these individuals hold back from actually saying this, and instead opt for a small explanation that does no justice for either of us.

Since my last post, I have come across two recent articles that have tried to spread awareness on POTS, one on the local news, and one in a magazine. However, my excitement was quickly replaced with dread and disappointment when I read the articles and found no real explanation of POTS, or facts that would help others understand what life is like with dysautonomia. In fact, both of these articles did the opposite. Both of them were deeply flawed and painted an awful illusion of what POTS is like and/or who it affects, and why, making it harder to get the truth out there.

I can only assume that I’ve been in such a deep brain fog stupor for the last four months and that is why I managed to start a blog without ever explaining what my blog was about. Honestly, who does that? Me, of course. Anyways, I’m going to do my best in this post to explain in as much detail as possible exactly what POTS is, what it means, and how it affects those of us who have it. I’m also going to try not to bore you, but I admit that science is not always interesting and health is unfortunately made up entirely of science. However, I will do my best to explain what each long, confusing word means in basic English, even if I have to use diagrams and charts to do so.  

To begin, POTS is short for Postural Orthostatic Tachycardia Syndrome. Postural = position of the body. Orthostatic = upright position (in this case, sitting or standing, or any time the head is above the heart). Tachycardia = a heart rate that is much faster than normal, generally a resting rate of 100+ beats per minute. Syndrome = many symptoms that all correlate to the same condition, think of the syn in SYNdrome meaning SYMptoms. Essentially, POTS just means an individual who experiences an abnormally fast heart rate with many symptoms present upon sitting or standing. Makes more sense, doesn’t it?

Causes of POTS

            There are many ways doctors assume POTS can be developed. These include the following; growth spurts, hormone disturbances, viruses, trauma, pregnancy or childbirth, and others. For many POTSies I’ve had the chance to talk to, trying to figure out how it started is often one of the most troubling questions. There is no way to prevent POTS and it is not a contagious condition. POTS is something that seems to just happen, as far as any of us know. For me, it was more than likely a parasite I had picked up that shocked my system, leaving my system unable to recover completely and open to developing POTS because of this.

That does not mean anyone who develops the same parasite or virus, goes through the same trauma, becomes pregnant or gives birth, or goes through a growth spurt is going to suddenly become chronically ill with POTS. Nobody can explain to me why it just picks certain people, and many doctors will insist there is no genetic link or predisposition. However, there are quite a few POTSies who have siblings, parents, grandparents, or cousins that have similar, or the same, condition.

Types of POTS

Adding to the confusion, but hopefully still understandable, POTS is a condition of dysautonomia. Dysautonomia is any condition that affects your autonomic nervous system. If you’re anything like me, that means absolutely nothing to you. To explain, your autonomic nervous system controls everything your body is supposed to do without you having to think about. Breathing, heart rate, blood pressure, sweating, temperature, digestion, and more. To my knowledge, POTS is one of four conditions of dysautonomia.

Something that has been fairly new knowledge to the POTSie world is that there are different types of POTS. The various types are assumed to be determined based on how each individual develops POTS to begin with. Here I will explain a little about the two types I’ve heard the most about, hyperPOTS and hypoPOTS. I’ll admit, I still know very little about this, so the following information may not be completely correct and I completely recommend looking into it further.

To my knowledge, hyper POTS is short for hyperadrenergic POTS. Hyper meaning over-stimulated and adrenergic meaning adrenaline (also referred to as epinephrine), this type of POTS sees an individual experiencing unnatural adrenaline responses. If you think of POTS in terms of dominos, there has to be a factor that knocks the rest over, or starts the falling. For hyperadrenergic POTS, this would be the unnatural adrenaline response, which would start the symptom set off (or falling of the dominos, in this example). Once an individual with hyperPOTS stands, their blood pressure begins climbing because of their adrenaline response.

This is probably about to get really confusing, really quickly, and I apologize for that. For those with hypoPOTS, or hypovolemic POTS, this generally does not occur. Hypovolemia essentially means you don’t have enough blood in your body to function normally, similar to bleeding out or anemia. I am medically dubbed as a hypoPOTS patient. However, my blood count is completely normal. Weird, right? To explain, my body acts as if I am lacking a normal blood supply because of how severe my blood pools. Blood pooling means your blood sits in your feet, legs, or abdomen, rather than circulating completely through your body. Basically, my POTS symptoms are worsened because of the lack of blood I have circulating through my heart, head, and torso. For me, this means my blood pressure is generally very low. Think 90/60 or lower.

Symptoms

In terms of symptoms, it is not uncommon for individuals to focus on a few main symptoms, making them the most well known symptoms of POTS. These include; dizziness, headache, fainting, pre-syncope, palpitations, nausea, and blacking out. Unfortunately, many people hear these symptoms and assume, since we haven’t listed any others, none exist. This is far from correct. Each of us experience upwards of 30 symptoms daily, regardless of which type of POTS is present, and most of us have just learned to pass these off as “normal” for our bodies. This large quantity of symptoms is why POTS regarded as a syndrome and not a disease.

Continuing off of that, we’ll talk about symptoms and what they really mean. First of all, the main symptoms; dizziness, headache, fainting, pre-syncope, palpitations, and nausea. There are many forms of dizziness, for me it usually means the room appears to be spinning, even if I’m sitting still. Headaches are pretty straight forward – there is pain in your head. These can range from a minor annoyance to absolutely debilitating because of the pain, depending on the circumstances surrounding why it’s there. (Example, dehydration). Fainting, for me, means you completely lose consciousness. Pre-syncope is really just a fancy way of describing the symptoms a body may develop before fainting. For me this is the 30 seconds where my body is all “girl, you need to take a seat”. Palpitation is doctor speak for being able to feel your heart beat, usually this means it feels as though it’s punching you from the inside out. Nausea is the feeling of needing to vomit, regardless of whether or not you actually do. Blacking out is similar to fainting, although you may not actually lose consciousness. For me, blacking out is the same as tunnel vision – my vision has started to curl in around itself and things have gone dark, but I do not faint.

Other symptoms experienced can be any of the following, and may be experienced at any time; fatigue, lightheadedness, tremors, exercise intolerance, brain fog, anxiety, abdominal cramping, constipation, diarrhea, vomiting, insomnia, chest pain, shortness of breath, tinnitus, disorientation, blood pooling, poor circulation, low or high blood pressure, bloating, visual disturbances, overheating or chills, and even weak muscles. To put this into perspective, these are only the symptoms that I personally experience, and have heard other POTS patients experience as well. Others may experience less, or more, as each patient is different from the next.

Fatigue is really just being extremely tired all the time, even with sleep. Lightheadedness is feeling as though there’s nothing in your head other than air, which often occurs before fainting. It feels almost as though your body is beginning to disappear. Tremors are also referred to as the “shakes” and occur involuntarily. So your hands, arms, or other body parts, may begin to shake uncontrollably for no obvious reason, without your control. Exercise intolerance is the inability to work out. Yes, this IS a very real thing. Many POTS patients cannot exercise because our bodies essentially just quit when we try – fainting, blacking out, lightheadedness, extreme warmth, nausea, etc.

Brain fog is like that one person that’s always around even though you don’t enjoy their company. Brain fog is kind of like having short term memory loss. I forget pretty much everything unless it’s irrelevant and completely useless information. For example, I could tell you that otters fall asleep holding hands so they don’t drift apart, but ask me my phone number or birthday and I’ll go blank. Fun, right? Anxiety is the feeling of being uneasy even though you may not be able to place it, or understand why. Abdominal cramping describes any type of pain in your stomach or surrounding areas.

I’d really like to believe that constipation and diarrhea need no explanation other than they are opposites and neither is pleasant to experience in any way. Vomiting is when whatever is in your stomach exits through your mouth, usually unannounced and unwelcome. Insomnia is the inability to sleep, no matter how exhausted you are, how much you want to, or how much you need to. It’s just not happening. Chest pain is pretty self explanatory as well; any type of pain in your upper torso could be chest pain. Shortness of breath can be mild or severe and occurs in healthy people when they are being physically active. When mild, it’s just slightly harder to catch your breath. When severe, it feels as though you cannot catch your breath, or as if someone is squeezing the air out of you, even without physical activity.

Tinnitus is also referred to as ringing or buzzing in the ears, it is the feeling of slight vibrations in your ear drums that sound similar to alarms ringing. Your ears may also be warm when this happens. Disorientation is somewhat similar to brain fog, on a lesser scale generally. This is when you lose your sense of direction or suddenly forget what you were doing, or where you were going. This happens to many people, and is not always a sign of a medical issue. For example, how many of you have walked into a room and suddenly forgot why you went in there? This is disorientation. We briefly discussed blood pooling when discussing types of POTS. To refresh your memory, blood pooling is the act of your blood sitting in your feet, legs, or abdomen, rather than circulating properly throughout your body. Poor circulation is similar to this, and may be the cause of blood pooling in some individuals. Poor circulation just means that your blood doesn’t flow as it’s supposed to, which can cause cold extremities to occur.

Having low and/or high blood pressure is not necessarily a symptom for most medical conditions, but for POTS it is a staple of the condition and therefore very important to include. High blood pressure is considered 140/90 or above. Low pressure is trickier, because it will not be considered low unless symptoms of low blood pressure are present. To put this into perspective, normal or optimal blood pressure is 120/80. Personally, my “normal” is usually 90/70, and is considered a “low normal” because I generally do not feel symptoms of low blood pressure unless I dip below 90/70. However, 90/70 would be very low for a person whose normal readings were 120/80.

Bloating is the ability to consistently look very pregnant without ever giving birth. Who wouldn’t want to be bloated, am I right? Basically, it’s the simplest form of torture and can become quite painful. Bloating means your stomach has become swollen, usually with gas, but sometimes with fluids. For POTSies it can be either, because some of us bloat due to blood pooling in the abdomen, in which case this “fluid” becomes blood. Visual disturbances can be anything within your visual field (vision) that is normally not there. Flashes of light, black spots, blurry vision, etc. Overheating and/or chills are exactly what they say.

Overheating feels as if someone stuffed you in an oven to bake for hours, whereas the chills can cause chattering teeth, shivering (little shivers, or tremors, that include the entire body) and goose bumps. Chills can occur at the same time as overheating, as a last resort way for your body to cool you down. Weak muscles are exactly that, and can occur spontaneously, causing you to drop whatever you’re grabbing at, or can be the cause of muscle deconditioning. Muscle deconditioning means that the muscles have begun to decrease, which could be the result of many things.

I’ll leave my symptom list at that, considering there are over 30 symptoms listed there and it has taken me 1,264 words to describe each of them. I bet your eyes are tired now, aren’t they? Let’s continue onto prognosis.

Prognosis

            Prognosis can vary in each patient, dependent on their form of treatment and underlying conditions. There is no cure for POTS, but for many patients, the prognosis is often “fair”. Meaning it could really go either way, as is the same with many chronic conditions. If you force yourself to try and continue to train yourself, you’ll have a decent quality of life. If you give up, it will only go downhill from there. Personally, I wouldn’t say that my quality of life is good, but that doesn’t mean I cannot still achieve everything I hoped for prior to becoming ill. It simply means I’m going to have to find new ways and it’s always going to be a challenge that I’m going to have to work around.

Treatment

            To my knowledge, there are no treatments specifically designed to treat POTS symptoms. All treatment options are off label and considered trial and error. The first thing most doctors will tell you is to increase your fluid and salt intake, which acts as a natural way to increase your blood flow. For most of us, this alone is not enough to make a difference. The top treatments are usually beta blockers, or florinef and midodrine. Sometimes these are taken individually, for others, all together.

Exercise is very important for POTS treatment and symptom management. Which seems completely contradictory because I just finished explaining how so many of us are exercise intolerant, but bear with me. Exercise encourages your blood vessels to tighten when you do stand, which is the main malfunction in POTS patients. If we can train them just enough to function somewhat more normally, quality of life can improve greatly. Other treatment options may include; IV therapy, antidepressant medication, ADD/ADHD medications such as Adderall or Ritalin, medical marijuana, the use of compression stockings, and more.

I know this was an incredibly long post and I appreciate each and every one of you who stuck with me through it, and hopefully even learned something. Awareness is one of our only hopes for developing more information on this condition, as well as any solid treatment options, or even a cure should one exist. Please educate your family and friends. If you are a POTSie and noticed any errors, please message me at one of the accounts listed below.

Rest easy spoonies, xo.

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My Journey to a POTS Diagnosis

            It was a mere two months before my 17^th birthday that I ended up sicker than I had ever been before. My family and I were visiting extended family out of town and at the end of a spontaneous beach day, I ended up bathroom bound. I figured it was just the flu passing through me and hoped it’d subside before our three hour journey back home at the end of the following day. When the next day came around, I woke up feeling somewhat sick but much better than I had, so I figured it was safe to say the worst was behind me. Never in a million years could I ever have imagined what was just beginning.

            For the next month I gradually got sicker but just continued brushing it off. My appetite completely disappeared, I was slowly shrinking in size, I was nauseous nearly all of the time, I was getting terrible dizzy spells, I couldn’t sleep, couldn’t breathe, started having chest pain. What I remember most vividly was the insane rib pain I would get at any point of the day. It was approximately two weeks before my 17^th birthday that my body just gave in to the illness that was attacking it. There was one day where I just started throwing up and couldn’t stop; I couldn’t even hold room temperature miniscule sips of water in. I lost nearly 10 pounds in two and a half days. What I thought started on a Wednesday had me in the ER by Friday afternoon, and that’s where my story started.

            Of course I had no idea what was happening to me or why, I figured it was emotional stress up until that point, but I was doing everything in my power to heal myself and I was just getting worse rapidly. They tried fairly hard in the ER to help me out. I ended up receiving the first IV I was capable of remembering for fluids, gravol, and a pain killer, six x-rays (three chest, three stomach), urine samples, and blood work. Eight hours later and I was beyond ready to leave, and with the gravol giving me the illusion of health, I was determined to be discharged. To her reluctance, the doctor agreed if I could keep two glasses of ice cold ginger ale down, she’d let me go. Thankfully I had a hefty dose of gravol in my system and went on my way.

            I knew after that there was something going on within my body that nobody was figuring out, and I also knew it was damaging me significantly. I ended up in my family doctor’s office multiple times over the next few months begging him to take me seriously. I often left with his explanation of “it’s just stress” or “you’re worrying too much”. He wanted me to firmly believe what he believed – it was all in my head. Eventually he took me somewhat seriously and tested me for parasites, where we learned I had been the host to giardia lamblia for the past three or four months prior. After being treated and still experiencing all of my symptoms, some now worsening, he sent me for a pulmonary function test, an echocardiogram, blood work, and an abdominal ultrasound. In his opinion, all of my results were normal.

That’s when I was sent to see a gastroenterologist. Thankfully, she took everything I said seriously. She checked into every symptom I shared and told me right off the bat the testing she was going to do. First, I was sent for more blood work, where she advised me my iron was slightly low but not of concern – I was never told the exact level. Following that, I was scheduled for a colonoscopy. All of this happened within six months of my original family beach day, but now I was just a few short months past my 17^th birthday. During my procedure prep is where everything hit me – how quickly my life was changing, how different I was compared to my friends, and how absurd the world I was starting to become a part of was. The nurse administering my IV in prep tried her best to comfort me, but I’ll never forget the look of pure heartbreak she had in her eyes looking down on me. She told me right before I was put out that her daughter was my age as well, and it struck me how different we could be despite our age similarity.

Following my colonoscopy, my gastroenterologist advised me she had taken a few biopsies just to be cautious, but that nothing was seen otherwise. A few weeks later at our in office appointment, she told me she wanted to proceed with an endoscopy and some biopsies, despite believing there would be nothing and what I was experiencing was just Irritable Bowel Syndrome (IBS). After my endoscopy, she told me everything had been normal, and she would see me in a few weeks. I spent the remainder of the night at home experiencing severe chest pains, which I ended up being too afraid to go back to the ER to be checked for. At my final in office appointment with her, she told me she believed I was definitely experiencing IBS but was going to order a brain MRI to be sure I didn’t have a tumour.

MRI’s are absolutely not a fun or relaxing test in the slightest. They are loud machines, huge but somehow also tiny, that have no comforting qualities about them whatsoever. Up until that point in my life, I had insisted I was not claustrophobic at all – I mean, how would I clean underneath my bed if I had been? Don’t get me wrong, I know plenty of people who find MRI’s to be a breeze; however, I don’t think I will ever be one of those people. All I can think of every time they roll me in is “wow, this must be just like being buried alive” and everything goes downhill from there. Factor in having an anxiety disorder, super sensitive hearing, and the inability to just lie perfectly still, and 30 minutes can seem like an eternity.

Anyways, following my first MRI, I called my gastroenterologist to book a follow up appointment to discuss my results, further testing, and all of that fun stuff. Her secretary informed me my results had been faxed to my family doctor as they didn’t specialize in my condition and I would have to see him for further treatment. I had my first cancer scare when I was 17 years old. I was beyond confused, what condition did I have? Did this mean I had a tumour? Did I have cancer? Was I going to die? By the time my doctor was able to see me I had already learnt from Google that it was most likely a pituitary tumour and that they often weren’t cancerous but could cause a plethora of unpleasant symptoms and often had to be surgically removed. My doctor wasn’t having any of this.

The student doctor explained to me it was most likely an old brain haemorrhage and asked me a bunch of questions; had I ever experienced head trauma or a brain bleed? Was I being tested specifically for a certain tumour? My family doctor walked in and told me there was nothing to worry about without even glancing at my results. I almost lost my mind in that moment. I am a completely calm person, but the person I was supposed to rely on for my health care was insisting having a tumour show up on a brain scan was nothing to worry about. At my insistence, he sent me for a second MRI to concentrate on my pituitary gland, as well as a referral to an endocrinologist to determine whether or not my hormones were affected at all.

The endocrinologist I encountered was less than pleasant. I can’t remember the exact time, but I believe I had either just turned 18, or was just about to. She refused to take me seriously in the slightest because of my age, she told me I was too young to have problems and she said she would run a blood panel as well as a follow up MRI in six months, but there would be nothing there. I left the office in tears. It had been over a year since my symptoms developed and I still didn’t have a diagnosis. Because of this, none of my teachers believed I was ill, and my peers thought I was just lazy and getting away with skipping all of the time. I had one friend to lean on at this time, literally just one. On top of that, I had missed an entire year of school, my senior year to be exact.

I decided I had no other choice but to take matters into my own hands. I talked to a bunch of doctors specializing in pituitary tumours and explained my situation; all of them said I should have been seeing a neurologist right off the bat. So, that’s what I did. I found a website that allows patients to rate their doctor and leave comments explaining their experiences with said doctor, and I found a neurologist that seemed as if they would take me seriously based on patient reviews. We called the office and within a month, I was in the office with a list of my 30+ symptoms and testing everyone else had brushed off. After separating what was most likely tumour or migraine, we went to work on uncovering the reason for the remainder of my symptoms.

There were quite a number of tests done before my neurologist brought up Postural Orthostatic Tachycardia Syndrome, but they were done in quick succession and I had a diagnosis within six months of being a patient.  I will never be able to express my gratitude for finally being put in the care of someone who knew what they were looking for, and someone who took every word I spoke 100% seriously. When I was finally tested for POTS, I was nearly 19 and over two years into this mysterious illness that plagued my life. It’s been a year and a half since my initial diagnosis, and I’m still learning new things about life with POTS. I was initially relieved to hear that I wasn’t crazy, I was really sick, but since then I’ve gone through a roller coaster of emotions. The great thing about POTS is that it’s not cancer. Then again, doctors know more of cancer and are more accepting of it, generally speaking. When everyday is an uphill battle against your own flesh and bones, there are days where cancer would almost make more sense. To clarify, there is never a day where I wish to have cancer. There are days, however, where it seems more reasonable to fight. 

I first walked into my neurologist’s office four or five months after my 18^th birthday, two years ago. Since my initial visit, I have gone through testing for things I thought I’d only experience after 30, at least. At 20, I’ve had in depth discussions about my chances of having children, my chances of having cancer, what my future looks like, and what the possibilities are of me having countless other conditions. To date, I’ve now had five or six MRI’s with another booked for approximately 9 months from now. I’ve had countless blood tests to check my hormone levels, iron levels, white blood count, liver lipids, cholesterol, sugars, inflammation within my body, and many more things I’d never remember the names of. I’ve had two field vision tests; gene testing for cancer, a pelvic ultrasound, another pulmonary function, two nerve conduction studies with the potential for more in the near future, a 48 hour holter monitor, and countless stool samples to check and re-check for giardia. And, of course, the obvious POTS diagnosis testing (more on that later). 

I hope all of you POTSies out there had a much easier experience with the medical world, and I hope you’re adapting to life with chronic illness as smoothly as possible, which is actually not smooth at all. I hope some of you can relate to my story (novel, really) and find comfort knowing there are other people out there cringing during every uncomfortable test and in depth conversation about our own bodies, probably just as much as you are.

Rest easy spoonies, xo.

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Grieving & How To Let Go

Personally, the toughest part of being diagnosed with POTS was learning how to let go of the life I had planned for myself, the life I hoped I would have by now. I imagine this is the same for many other medical conditions as well. For the most part, I have adjusted to the idea of dealing with all of these symptoms everyday, and all of the medical testing and time I spend in the hospital is almost normal for me now. However, when it comes to where my dreams lie and the goals I had set for myself? Letting go, and adjusting them, has taken me much longer to accept.

It's no secret that everybody has dreams and goals they set, generally with a broad deadline for when they would like to accomplish them. I was no different. I had hoped to get my license, go to college, get a job, etc. I was sick for a very long time before I reached a diagnosis, and while I knew during that time there was no way I could accomplish any of those goals, I still had hope that doctors would find what the cause was and fix it.

When my neurologist first told me he suspected POTS was the reason for my illness, I was confused more than anything else. I didn't know what that meant, but part of me was relieved that there was actually an explanation for what was going on with me. After we came to a solid diagnosis, I spent a lot of time trying to find out more information about this syndrome I had never heard of before. The more I learned, the more I realized what kind of future I was most likely going to have.

Now, I'm not saying individuals who suffer from an illness have no future. I absolutely believe in my future and have a lot of hope it will be a happy one. However, I do realize how much determination, work, and strength it is going to depend on to get there. This is the part I've struggled with the most – letting go of the ideas that I had for myself when I was healthy. Having an illness doesn't mean you can't get to where you want to get to, or that you can't do what you want to or be who you hoped to be. It does mean you're most likely going to have to find a new way to accomplish those things though.

The frustration comes from knowing it'll be much harder than it was originally supposed to be, but frustration is actually good. Frustration means you're grieving, grieving the life you were supposed to have, and that is completely normal. Frustration means, whether you realize it or not, that you're slowly beginning to accept your new life and future.

Acceptance is a very hard thing to experience. Regardless of the situation, accepting that everything is going to be different and nothing will be how you expected is going to be a major challenge you experience in your life. Don't ever think it isn't possible though, it is one hundred and fifty percent possible. There is no time line for grieving, whether it's grieving a person's death or grieving the loss of something very important to you. For me, grieving happens multiple times. Every time I have another test to determine if I have an underlying condition, or whenever the doctor gives me that “this should be working by now” look and I feel hopeless and stuck all over again, I grieve.

Every time something changes and I'm expected to just go with it; a new diagnosis, more medication, uncomfortable testing or treatment, another goal of my present pushed further into my future. I feel helpless, hopeless, frustrated, heartbroken, and just straight up angry sometimes. So I throw myself a pity party. I cry on and off all day long and feel miserable for what my life has become, I think of all of the things I've convinced myself I'm never going to have and I get angry that this has happened to me. And then I pick myself back up the next day and remind myself how blessed I am for all of the things I still have.

A lot of chronically ill would probably wish they never got ill, but at this point I'm glad I did. Sure, there are plenty of days where I hate everything about this, but there are so many blessings that have come into light because of being so sick. I've learned all of the people I can rely on, as well as all of the people I shouldn't have trusted to begin with. I've learned multiple ways to do different things. I've figured out new hobbies, and I've had the chance to develop new talents. I have the chance to spread awareness for these frustrating conditions, and I have the chance to let others know that they are never alone. I've learned so much about my government, disabled individuals, the spoonie community, and how society reacts to young, sick people. All of these have been incredibly important lessons for me and I would be afraid to meet who I would have become without learning them.

The point is, at the end of each day, there is one person you have to be on good terms with, and that is always yourself. It does not matter what the world thinks of you, what your parents think, what your partner thinks, your siblings, nobody else. You have to be the one that loves yourself, the one that is content with your decisions and actions, and the one that is happy overall with the person you are. If any of those aren't true for you, then you have to start thinking of what needs to change for you to get there.

Is it a person bringing you down? Are you always giving all you've got to others and never yourself? Is it a situation you've let go on for too long? Whatever it may be, allow yourself the strength to change it, and the faith that it will work out in your best interest. Don't ever let anybody tell you that what you're feeling is wrong, regardless of the circumstances. As a human being, you are allowed to feel whatever you want, whenever you want. The only thing you can control is the people you allow around you as a support system. If they aren't supporting you, what are they there for?

Remind yourself everyday that you are strong. You are going through something most people could never even imagine surviving through, and you are brave for doing so. Letting go of whatever you had before is okay, it's hard and painful and it just downright sucks sometimes, but it is okay. It is okay to feel all of the emotions that come with that too, I promise. We are all in this thing together, and if by some miracle we all get better out of the blue in the future, just imagine how much we'll be able to do after this experience. If nothing else, being chronically ill is teaching you what is really important in your life. It is putting your life into perspective and forcing you to make a decision.

What I've learned about myself through this are the things I really want to do. Most people my age are partying on college campuses, and at crowded bars. I don't have that choice anymore, but I've also learned that I don't want that choice. On the rare occasion that I do receive an amazing opportunity, I make sure to never waste it because of this. I see a lot of people my age wasting opportunities, and I've become a person that just can't do that, and for that I am grateful. Allow yourself to grieve, but also allow yourself to feel okay with your life again. It is okay to fall apart from time to time, but it is not okay to stay there. You learn a lot about yourself each time you pick the pieces back up, and each time you get a little stronger. All we can do is keep hoping, keep trying, and be there for each other. Remind yourself that you are never alone.

And as always, rest easy spoonies.

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Telling It Like It Is

I'm going to say it like it is today, so if you don't like to hear the truth, it's probably best you exit this page. When it comes to any form of illness; disease, condition, syndrome, whatever it may be, there is a good chance people just do not care what you're going through. Unless, of course, it's terminal. See, another hard lesson I had to learn because of my health is just that – nobody wants to be around you or act like a friend unless you're dying or dead. What they don't seem to understand is that there is no guarantee any of these illnesses won't be the reason anyone of us dies. Sure, there is a good chance we'll all be miraculously cured someday. Nobody talks about all of the people who don't end up better though. Another thing none of those people understand is how frequently your body can convince you that you just might be dying this time.

Something I've had an incredibly difficult time explaining to people is how sick I really am, and how POTS affects my entire body. Everyone laughs it off when I say it affects everything, literally every part of my body somehow, because they assume I'm just fed up and exaggerating. I'm really not. In general, POTS patients can experience any of the following, at any given point, with no warning at all. The main symptom of POTS is having a ridiculous heart rate, and by ridiculous I mean it increases to over 120 bpm, or more than 30 when you change from lying down to sitting/standing. There have been quite a few days where my “resting” heart rate was between 130-140 bpm, and that was lying down. Following this abrupt change, any or all of these can happen; nausea, lightheadedness/dizziness, chest pain, shortness of breath, ringing in the ears, heart palpitations, fainting, disorientation, brain fog, inability to exercise, fatigue, cold fingers and toes, blood pooling in the legs, weak muscles, low or high blood pressure depending on your body's reaction, headaches, bloating, diarrhea/constipation, stomach cramping, tremors, visual disturbances, insomnia, overheating/chills, nervousness, and more.

To put this into perspective, I'm currently experiencing all of the following at this very moment; increased heart rate (it was 136 last time I checked), nausea, recurrent chest pain, shortness of breath, brain fog, inability to exercise, fatigue, cold fingers and toes, weak muscles (I'm forever dropping everything, including myself), low blood pressure, bloating, tremors, visual disturbances, headache, and chills. When things get really bad for me, I can experience premature ventricular contractions (essentially heart skipping a beat which results in strong palpitations – feeling a strong beat). In terms of brain fog, I've forgotten my birthday, my address, my phone number, parts of well known routines, and more. So when it comes to remembering short term things, such as where I put my purse down, it could end up lost forever. On top of all of these symptoms, many of us have multiple other conditions with POTS (or another dysautonomia condition) and experience multiple symptoms from each of those as well.

Despite all of this happening, when people ask me how I'm feeling or doing, I almost always answer with “I'm okay”. Why? I've learned to accept my most common symptoms as normal life for me, so I'll only ever admit to not doing too well when my symptoms get out of control or I get a virus on top of my usual symptoms. Plus, most people take it at face value and wouldn't care to hear you list off the 20 symptoms you're currently feeling as an explanation for why you're not doing well. Back to my original point, I spent a long time pretending I wasn't that sick, mostly because that's what people want to believe. Have you ever noticed the only awareness campaigns that turn out successful are centred around death? Cancer, suicide, tragic accidents, whatever it may be.

Now, in no way am I saying we should all abandon these causes or that these people don't deserve recognition. I am saying we could all do a little more to recognize those that are doing their absolute best to survive and push through conditions that may or may not kill them. Just because most of us aren't on our death beds does not mean there is nothing equally as troubling happening to us. Many of us are grieving just the same, many of us have been forced to watch our goals and dreams die along with the healthy version of ourselves, and many of us would just like to hear someone step up and recognize that once in a while.

No, POTS is not terminal that we know of, but yes, we are all fighting very hard to make sure of that. As I'm certain all of you have learned in your lives, fighting against something that seems never ending seems nearly impossible without a support system. That goes for all struggles, not just health. If you accomplish nothing else today, do your best to support someone - whether they seem like they need it or not. Even if they don't seem to value your support much right now, I'm sure that will become a moment they will look back on in a positive light. There is always room to grow into a better person than you were yesterday, and you should never prevent yourself from trying.

As always, rest easy spoonies.

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Dealing With Ignorance: But You Don't Look Sick!

One thing you will learn relatively quickly when dealing with chronic illness is that there will always, always be someone who is too ignorant to understand. The good part is, these people usually stand out like a sore thumb by using phrases like “but you don't look sick...”. The amount of times a person dealing with an “invisible” illness hears phrases like this directly relates to the amount of patience they have when this occurs. Understandably, being sick and unable to do simple things you've spent your whole life doing is incredibly frustrating. Adding on the frustration that occurs when an outsider thinks looking fine on the outside means you're magically cured and/or are imagining the whole thing? Well, it's no wonder I've developed an eye twitch.

The easiest, and most efficient, way I've developed for dealing with ignorance concerning my illness is quite simple – do what my mother has always told me to do, and simply ignore them. Who knew mom actually knew what she was talking about, right? Now, if any of you are similar to me and the very idea of ignoring someone so coldly seems too far fetched for you, then do your absolute best to focus on something happier, funnier, or even more logical than whatever may be coming out of the mouth of ignorance. For example, I think of the spoonie community and all of the memes passed between us about individuals just like this one, and laugh to myself a little.

See, the crazy part is, most of these people don't even realize just how simple minded they sound. Most of them are even convinced they are doing, or saying, nice things to us and helping us in some way. I do my best to forgive each and every person that puts me, or my illness, down in some way. Sure, some take a lot longer than others, but I always try to remind myself that none of those people can relate to the life I have to live now. The best they can do is try to imagine what I might be experiencing, and even that is often asking for too much. Ask yourself, if you were the healthy person in this situation, would you react differently, not knowing what you know now?

No matter what the situation is, illness or not, looking at the bigger picture will always benefit you. Always. Unfortunately, I can pretty much guarantee you will continuously hear the most aggravating things from the most unsuspecting people. They will constantly tell you that you don't look sick because they just don't know what they're looking at. They will always try to suggest things that seem so obvious to you but so crucial to them – stuff like, 'just get more exercise', or 'change your diet'. As if this thought never could have ever been fathomed in our own minds without their insistence. These are the very situations that will develop your patience. So, if nothing else, thank them and leave it at that. Neither of you may realize it at the time, but it is through these learning curves that we are able to develop ourselves deeper than we originally thought we were capable of. Someday you will realize just how much all of those snide little comments helped you blossom into the beautiful person you are becoming. Until that happens though, feel free to Google chronic illness memes and laugh to yourself, while also finding strange comfort knowing someone out there completely gets you and what you're going through. And hopefully, they too are laughing.

Rest easy spoonies.