My POTS story pt. 6
Part 6 brings us to 2016! Thank you to everyone who has been following along as I’ve shared my journey with POTS. If you haven’t already, check out part 1, part 2, part 3, part 4, and part 5 of my journey with POTS!
I concluded part 5 of my POTS journey by talking about how I moved back into my apartment, how I was developing new symptoms, and was decompressing from PTSD. I concluded sharing my experiences that took place in 2014-2015, and today I’ll be talking about 2016 and 2017.
At the end of 2015 and beginning of 2016, I started volunteering at my Church. The opportunities came up naturally and it was a perfect way to ease back into a job without the added pressure. I volunteered as a small group leader for a course called Alpha and for a young women's ministry called CAYA. In 2016 I was still incredibly symptomatic, my symptoms were fairly unpredictable, and my depression was severe. However, I was determined to have as many positive experiences as my body would let me to counteract this depression. I never experienced depression or anxiety before getting sick (depressive episodes sometimes in response to trauma but that was it). I hated not being able to motivate myself out of a depression. I thought “if my brain wasn’t always like this, then it can go back to the healthy, not-depressed place it was before. This is just a neuropsychological response to trauma and I have to counteract it.” And so I tried.
On the New Year’s weekend of 2016 I went to my dad’s cottage with some friends. They thought it would be fun to do a polar bear swim of our own on the morning of January 1st. The plan was to all wear onesie PJ’s to the beach, do the pillar bear swim, and get back in them. My friend who’s a swimmer decided to jump off the dock instead of run in the water, so the rest of us proceeded to do the same. I was still incredibly deconditioned, but I was too self conscious about my new (thyroid) weight gain (of 50+ lbs), that I didn’t want to wear a bikini, nor did I have one that fit. So I kept my brother’s PJ onesie on when I went in the water and that was a big mistake. First of all, it was bone-chilling cold. Second of all, the water weighed down the thick onesie. Thirdly, I hadn’t yet swam since becoming ill. So when I tried to get my head above the surface, I barely had enough strength to. I had a moment of panic because the onesie was pulling me down with every attempt to get my head above the surface, but thankfully I finally made it, played it cool, and recovered for the rest of the day.
2016 looked a lot like that.
2016 also brought about a lot of physical pain...
Pictured: nerve blocks I got done by my pain management specialist for Occipital Neuralgia.
A lot of tests..
Look through the screenshots above to learn about the testing I had done at Dr. Raj's office in January 2016. I had to be off my medications (besides Gabapentin) for a few days beforehand so that the autonomic testing would be accurate. I also had a followup appointment with him after in which he increased my medications and sent more referrals out for different doctors in B.C. for testing.
One thing Dr. Raj and I had talked about was the fact that a brain MRI I had done showed lesions in my temporal lobes. Since my EEG's were historically abnormal, my neurologist thought maybe it was temporal lobe epilepsy (we never actually figured this out). My neurologist prescribed me Topamax in hopes that it would help with some of my symptoms, but I couldn't handle that medication. He tried me on a couple of anti-seizure medications that made me feel so much worse. Dr. Raj said he has a nephew with temporal lobe epilepsy and this nephew's mom (his sister or sister-in-law, I forget) couldn't tell if the symptoms her son experienced were from the epilepsy or the medications. Dr. Raj advised that I continue under the advisory of this seizure specialist, but that he didn't think it was causing a lot of my symptoms (but that POTS was to blame instead, for at least the majoriy of my symptoms).
A lot of brain fog and fatigue...
The left picture is an appointment time I wrote down in my calendar with no name of the doctor or information whatsoever. Stuff like this happened a lot in 2016. The picture on the right is a screenshot I found back from 2016. My sleep schedule was unpredictable and I "napped" for 5 hours in the middle of the day on many occasions.
A number of hospitalizations..
And a lot of depression...
2016 felt like I was trying to climb myself out of a hole I didn’t dig myself in. It felt hard to climb out of a dark pit of depression without the physical strength to do the things that once brought me joy.
In the first and 3rd picture above, with Fozzy right there by my side, I am having what I now refer to as "bath tub moments." These were the moments I felt like I was trapped underneath a weighted blanket of depression. They happened since I moved back into my apartment, and were intensified the week before my period since developing the symptoms that were later identified as my thyroid tumor symptoms. When this wave of depression would hit, there’s nothing I could do but ride it out and try to survive. I’d lie on the bathroom floor, or in the bath tub fully clothed with no water, for hours and didn’t have enough mental strength to pray, or call a friend, or do anything but to say the name Jesus over and over again (my attempt sat praying). Going back on birth control helped a bit with this, so did counselling and neurofeedback for PTSD and codependency recovery, and so did Fozzy. When I got Fozzy I knew I’d never commit suicide because there’s no way I could leave him wondering where his mom went. But more than that, it was God who instantaneously healed me from suicidal ideation in the summer of 2017 (you can read more about it in my blog post series about suicidal ideation).
On March 3rd (according to Instagram, not my memory) I had an iodine test to see how much my thyroid absorbed. I remember not being able to eat sushi (not like I do much anyway), and having to avoid certain medications, to make sure I had an accurate result. The next day (I think? Or shortly after) I had a thyroid ultrasound. I knew something was wrong by the tone of the technician’s voice and the odd questions she was asking in the middle of the scan. I know they’re not supposed to hint at anything, and she wasn’t trying to, she was just easy to read.
Trying new medications and supplements became a fear of mine back in 2014 when I started reacting, and sometimes being hospitalized, due to my body reacting to seemingly safe (prescribed) medications. Once I moved out and lived alone, this made me even more fearful. For the first while, I would have a family member check in on me a couple hours after taking it. I was worried I’d pass out, or have a seizure, and I’d be alone and no one would know. Neither of those fears were unreasonable, considering both have happened on their own and in reaction to medications in the past. However, my health had stabilized a bit more, or else I wouldn’t have moved out on my own. Thankfully my family was there for me if I needed them, no matter what time it was.
On one occasion I even kept my brother on the line for half-an-hour while I drove to a 24 hour drug store to pick up some Magnesium. I had run out around a week ago, and thought I’d hold off until I saw my naturopath (as I usually bought my vitamins from her office), but my restless leg syndrome, tremors, and adrenaline surges came back at full-force. I couldn’t fall asleep and felt horrible. Magnesium Glycinate (not citrate!!) has helped me immensely, even though I’ve never been deficient in Magnesium and have a diet rich in Magnesium. I obviously thought I was safe enough to drive, or else I wouldn’t have, but I kept my brother on speaker phone to calm my nerves.
Throughout this time, I continued to seek out natural alternatives to help strengthen my body as much as possible. I found a new chiropractor that helped me a lot with the pain of my subluxations.
In the Winter and Spring of 2016, I found myself volunteering with the preschool-aged kids for “Kids Church.” I volunteered every couple of Sundays and it brought so much purpose and joy back into my life. There’s nothing like being around kids, who find joy in the most simple things, to help you find joy in the mundane things of life.
Throughout 2016, I was a lot more confident about my team of doctors, but every once in a while, I found myself seeing a doctor like the one above.
2016 was the year that I tried to integrate back into society but was really struggling to adapt. I was chronically stressed, late, rushed, showing up with my hair still wet and my shirt on backwards, and overall just feeling like I don’t have my crap together. I’d make goals for sleep but insomnia kept me up, I’d sleep through my alarm, I’d be reckless in traffic making up for lost time, I’d be forgetful and overbook my schedule, I’d cancel a lot on people, and I was constantly overwhelmed. My biggest issue was learning how to stay motivated with depression and chronic illness, and learning new time management skills. I was always underestimating how much time it would take me to get ready or get somewhere. For some reason, it took around a year for my brain to adjust to how long it now took me to do basic tasks.
One thing I read a while ago on a screenshot from Tumblr really resonated with me about this time management/motivation issue. The post was about how the writer wish someone had told her to just show up. She was referring to her perfectionist mindset and how her depression and anxiety often got in the way of her doing things perfectly, so she felt too ashamed and depressed to show up. She said "How bad is it that I thought it was better to not show up than to accept a B." She then urged people to show up for their lives out of self-love and self-care.
This is something I was doing in school but felt ashamed for. I showed up with wet hair to class more times than I didn't, because I underestimated how long it would take me to shower (and then recover from a shower) and blow-dry my hair. I was embarrassed to show up like that. I was ashamed of getting lower marks than I used to. I contemplated just not showing up to class on the days where I had to wear the same clothes twice in a row because I didn’t manage to get laundry done, I wasn’t wearing makeup, and felt awful. This also transferred over to my social life as well: I contemplated cancelling because my shame tried to convince me that not showing up was better than showing up imperfect.I couldn’t have improved my time management skills if I didn’t show up. I had to show up. It was meaningful to show up. But I was ashamed when I showed up.
My brothers, my mom, and I out for lunch on Mother’s Day 2016.
After the waitress took this picture, I realized how much weight I had gained. I looked nothing like myself and it broke my heart. I hated when my friends or family wanted to take pictures when I was that heavy. I didn’t want old acquaintances to see the pictures and see me like that. I felt like if there was no proof of me gaining the weight, then it didn’t happen. This is one of the pictures that I allowed to sneak by because it was Mother’s Day. It’s a picture I have on my fridge to this day, side-by-side with a picture of me before I got sick with POTS or my thyroid tumor. Underneath it, I wrote out some encouragement to myself to read each day. On this piece of paper on my fridge, I reassure myself that my body doesn’t need fixing, it’s not broken, and that the weight gain, cystic acne, and stretch marks are proof of my battle with illness and nothing to be ashamed of. It then encourages me to do what I can to take back my health by eating foods that nourish my body, not out of punishment but out of love. I look back on this picture with love now, not embarrassment.
I look back and see a woman that didn’t know her worth, a woman that was hurting so deeply and was so ashamed of her appearance that she tried to hide under baggy clothes. A woman who looks cute with chubby cheeks and deserved to be in a picture, or a room, just as much as anyone else.I also look back with empathy because even though it’s easy to say “your looks don’t define you,” I felt like I had lost all control with the weight gain. It wasn’t just the fact that I had gained weight, but the fact that my body no longer felt like it was my own. I’ve always been avid against fat-shaming, but once my physical appearance started looking like how I felt (different and outside of my control), I felt empty.
The end of April/beginning of May brought on a lot of positive changes for me. I I was determined to get my life back. I got a job, for one! I also had my first haircut in years and donated what taken off. This haircut did wonders for my body image! And on May 1st 2016, I rescued Fozzy.
On April 29th 2016 I started working for the first time since becoming chronically ill. I applied for a position that opened up at my church as a “Kids Church coordinator.” My pastor and an elder at the church, both of whom knew about the state of my health and supported me when I was bedridden, informed me of this part-time (8 hours a week) "summer job."
I’m so thankful that I decided to volunteer for Kids Church because volunteering was a safe place to test out the waters of how much I was physically able to do. Since I already had experience with their Kids Church program, I began to think and pray about whether or not I should apply for the job or not. I felt peace about moving forward with this position and sent in my resume. This was a big step for me, it was another risky step forward. I had no idea if my health would get in the way or not, I had no idea if I would have to take a step back for health reasons, or if I would disappoint. However, I felt as ready as I could have been without having certainty I could only receive from experience. A lot of times the only way you’ll ever know if you’re ready is by actually taking the chance.
That’s one thing I’ve learned through this journey; I’ve had to do a lot of things before I was ready to figure out if I was ready.
I had an interview and received a phone call that day informing me that the position was mine! That job ended up being an amazing opportunity and a huge step forward that propelled me in the right direction: the direction of better physical, mental, and spiritual health, and a place of responsibility and autonomy. That job required me to be at church a couple hours before and an hour after service, but besides that, I could work from home. I could come and show up to work at the Church’s office throughout the week if I wanted, or I could do work from home. I worked at the office for the first little bit, but once I got the hang of the job, I opted to work mostly from home. I ended up working there from May 2017 to January 2018 (they extended the job from its original “summer job” description) until God radically called me to a new place.
My before and after shots from that haircut.
On May 1st 2016 I really started my healing journey. On May 1st 2016, after 2 weeks of excitement and anticipation, I rescued Fozzy. I know it’s cliche to say this, but I truly mean it when I say that he really rescued me. I had wanted a dog for a while so I started to build up my strength in preparation. I slowly worked my way up to being able to walk for 10 minutes 3x a day. Before Fozzy, I sometimes wouldn’t leave the house for days in a row and that isolation really contributed to my depression. Fozzy was found bald, wounded, and on the streets of Tijuana, Mexico. His temperament and fear, cut ear, and back issue are proof of trauma. Focusing on trying to heal his trauma and provide him with a safe, trusted, and loving environment ended up being the beginning of healing my trauma.
Shortly after, I had a few tests on my breasts because of the lactation I was experiencing since developing my thyroid symptoms. They found a cyst in my left breast that is benign, and they don’t believe is causing any issues, but that breast is often in pain. I still experience discharge and my doctors don’t know why.
I got this wheeled basket to help me bring stuff from my car up to my apartment for whenever I needed to go out. I also brought my garbage and recycling down to our garbage room in this. Even though my parking spot in my building is thankfully the one closest to the elevator, and my apartment is as well, carrying heavy (over 5lb items) often became a challenge. It was doable but really aggravated my POTS symptoms. Finding products like this to help me navigate my daily life with chronic illness was a huge help.
The thyroid scan ended up showing a hyperactive thyroid tumor. This was odd for me to hear because I was having the stereotypical hypo- symptoms. My Dad has Grave’s disease (hyperthyroidism). He was the only one that I knew with hyper symptoms and they presented extremely different than mine, especially when it came to weight. On a cruise ship years ago when his Grave’s disease was at his worst, he was 120lbs (he’s short, 5’6”, but still) and would eat 3 dinners a day on the cruise ship and still lose weight. I was eating the same way I always had, which was a lot healthier than he ever did, and was gaining weight.
My thyroid scan prompted my endocrinologist to refer me for radioactive iodine treatment to remove the tumor. In the meantime, she had me get blood work every 3 or so weeks to keep a look out for my thyroid levels.
Father’s Day 2016 at our cottage. Fozzy’s first time kayaking with me. Kayaking is the only exercise I’ve done that hasn’t triggered symptoms for me. Dr. Raj has told me that rowing is especially important for those with POTS because rowing increases the size of the heart and deconditioning decreases it.
On June 21 2016 I had my radioactive iodine treatment. I expected it to flare my symptoms, as my body doesn’t like anything new, but it thankfully didn’t. I felt a bit off that day but for the most part, it was underwhelming.
My mom took care of Fozzy for a week while I was radioactive. My doctor, and the technician, said I shouldn’t be around kids, have close contact with people, or use public washrooms for at least a week. When I asked if I could be around my dog during that time, they gave me an answer like “hmm I’m not sure, you can probably be around him, maybe just don’t let him sleep in your bed for the time being. It’s probably okay, especially since dogs don’t live as long as humans.” That answer didn’t give me any comfort or confidence, so I had him stay at my mom’s.
Within the next month and a half I lost around 20 of the 50ish lbs I gained from my thyroid tumour. However, after that, I lost none of it on its own which was really frustrating. I ended up developing hypothyroidism as a result of the radioactive iodine, which caused me no additional symptoms. I was put on Synthroid, and am still on it to this day. After the radioactive iodine, I had significantly less shoulder, chest, and back acne (that I developed around the time of my tumour), my period slowly came back, I lost 20lbs, and I stopped experiencing the temporary neurological symptoms I’d have from time to time as a result of my tumour (these were different than the neurological symptoms I experienced as a result of POTS). However, radioactive iodine was definitely not a cure.
Some health-related gifts I got for my birthday in 2016 (July 1st).
After 2-3 weeks of setting up the Kids Church room with gloves, disinfecting everything more diligently than usual, and not volunteering in the actual classroom, I was able to go back to the actual classroom with the kids. I wanted to be extra careful of not letting this affect any of the kids I taught and cared for.
On July 13th 2016, the internist (I think) Dr. Raj referred me to, Dr. Morley, diagnosed me with Chronic Fatigue Syndrome. Dr. Morley was very thorough and gave me so much hope. As Dr. Raj suspected, my fatigue was in fact more than just POTS. She referred me to 2 different pain clinics, a neurologist, a sleep apnea study at UBC, and a complex chronic disease program.
In July, my grandma and grandpa (Mom’s side, my grandma pictured has EDS and Rheumatoid Arthritis) came to visit us. They raise 4 kids around my age on their own (their adopted daughter’s kids that she can’t take care of) so it was always a big sacrifice for them to come out to see us. This is a really fond memory of mine because although I distinctively remember how awful I felt, my grandpa had recently been diagnosed with Alzheimer’s and I was intentionally cherishing any time I had with him.
A Mast Cell reaction I had (some of it scarred, thanks to EDS). After this, my MCAD doctor (an immunologist) put me on a specific cream for this skin reaction that thankfully helped. He then also increased my Ranitidine and Cetirizine (my MCAD is very debilitating when I am not on these meds, but quite mild/moderate on these meds thankfully).
During this time, I started treating candida overgrowth and leaky gut syndrome with the help of my naturopath. When I first got sick, an osteopath and naturopath I saw assumed that I Had both and started treating me for both. The treatment made me feel worse and so we decided to order a test for candida overgrowth, and mine came back negative so we stopped the treatment. However, looking back, I definitely developed both after my short-term use of Florinef, and around the same time I developed my thyroid tumour and, as we later found out, adrenal fatigue.
In June 2016, I went on something called a "Fast Metabolism Diet" (FMD) with the supervision of my naturopath, in hopes that it would help me lose my thyroid weight. It wasn't super restrictive, it just was a more intentional way to jump start my metabolism, which slowed down when I became bedridden. I ended up losing only 5 lbs after doing it twice (with a break in-between). My naturopath said she had never seen such poor results on it. In her defense, my daily diet was pretty similar to the Fast Metabolism Diet.
In June I also went on a blind date with my last boyfriend. Looking back, I knew I should have just been friends with him, he would have been a great friend and he would have been okay with that. But when you start dating someone when you feel your worst physically and emotionally, feel most insecure and unlovable, and haven't dealt with your lost identity since developing chronic illness, you're not in the best place to try to find a life partner. Him and I went on a couple dates in the summer, became official in October, and ended things in April. There were many red flags about him: he wasn't a bad guy by any means, in fact he tried very hard to be a good guy. However, he had untreated mental illness, his own trauma he hadn't dealt with, and later admitted to me that he was a pathological liar. The stress of this relationship took a toll on my health. I wanted to leave again and again, and I expressed this to him, but didn't have the mental capacity to detach from anyone (codependency). It was a mess. I was a mess.
In July I found myself in the hospital for crippling abdominal pain. Looking back, I believe this was due to undiagnosed gallbladder issues that ended up flaring again in November 2018.
During all of this, I was still actively looking for pain management solutions. I was often found using a TENS machine in public, like pictured above.
Pictured above are some reports I got from one of my pain management doctors.
Dr. Morley, my Internist, referred me for a more comprehensive sleep study than the one I had at home to make sure that I did, in fact, have CFS and not a sleep disorder. Pictured above is me at my first appointment with the sleep disorder clinic.
In the Fall semester of school, I was still struggling with time management skills and my pain was getting worse. I took this picture above after getting out of class because I had realized that I was wearing a jacket and cardigan over top of the shirt I had worn to sleep the night earlier (I hadn't noticed until I got out of class). Adulting with pain is hard.
At the end of November of 2016, I had an amazing, life-changing epiphany in Church one day (I will share later when I share my testimony). God was calling me to help plant a Church with 2 pastors that had met me, and prophesied over me in 2014. These 2 pastors were friends with my pastors at the time. I realized that God was slowly having me let go of volunteer responsibilities at my old Church, Life Church, in preparation for a new season. I was becoming burnt out commuting to the Church I was working at (Life Church) because it was 1 hour away. I started going to that Church before I moved out (before I developed POTS) and it was only 20 minuets away from my mom. When I moved out I continued to go to this church. However, when I moved back out a second time (after living at my mom's for 1.5 years when she took care of me) and was now dealing with chronic illness, the commute slowly became far too much. God knew this. Even so, it was hard to leave a Church that I had a secure job with, a Church where I found Jesus and was baptized, a Church where 3 of my best friends would continue to go to, and a Church where the pastors felt like a second pair of parents to me. This required a lot of trust.
That brings us to 2017...
On the day my nephew was born, I was in a rush and the trunk door of my car slammed on my head when I was parked on a hill. I started slurring my words and was out of it but thought it was my POTS symptoms being flared from a shock. Weeks later, I was hit with a wave of intense post-concussive symptoms, found myself in the hospital, being advised not to travel to see my sick grandpa (the rest of my family still went thankfully) and to go on bed rest.
My newborn nephew, Braxton, and I in January 2017. He's my foster sister's baby.
Developing a concussion just a few weeks into the start of my Spring semester was rough. I took a few weeks off of frequent screen-use and tried my best to help my brain heal. However, I then developed Pneumonia and the flare continued.
On January 15th 2017, I had my last day at my job and my Church. IT was emotional and beautiful. The elders of the church prayed for me and sent me off with a beautiful card signed by everyone in the church and a bouquet of flowers.
A collage I made and posted on January 20th 2017- the 4th year anniversary since I developed POTS.
The first service at my new Church plant (the Church I currently go to): City Life Church. January 22nd 2017.
Some pictures from my Spring 2017 school semester.
On March 2nd 2017 I had my first appointment with my current geneticist. Prior to this, my mom had been diagnosed with Classical EDS by a Rheumatologist, and Dr. Raj and the geneticist he referred me to (who did it as a favour to Dr. Raj) at our Children's Hospital diagnosed me with POTS. However, this comprehensive appointment with my geneticist gave me an official diagnosis of Classical EDS. He has continued to supervise my treatment and make referrals to other doctors. He ended up referring me to the Complex Chronic Disease Program that my Internist, Dr. Morley, already had, but I didn't remember the name of it.
My sleep study showed that I did not have Narcolepsy or any obvious sleep disorder. I had to be off of my Modafinil and Midodrine for a few days beforehand to make sure it was accurate. After that, I had a daytime sleepiness test which consisted of 5 schedule 20-minute naps. I ended up falling asleep for every single one of them apparently. After each nap, they came in and asked if I thought I had slept and if so, how well. Every single time but one I said I didn't fall asleep. However, the results of the study showed that I did.
My followup appointment at the sleep disorder clinic confirmed the diagnosis of CFS.
On March 19th 2017 City Life Church had our first service our new building (the building we are currently in). We're just over 1 year old now (at the time I'm writing this). I still volunteer at our Kids Church program and am loving it. God has provided for me since I stepped out in faith and obedience when I listened to His calling instead of my comfort zone (by helping to plant this church).
Random appointments and such.
In April 2017, I saw my grandpa for the last time. I didn’t know it would be the last time, but I had a feeling it would be. I got a chance to pray alone with him and it was a beautiful experience I’ll never forget.
While I was there, my boyfriend at the time was staying at my place watching my dog. On the last night I was in Manitoba, seeing my grandpa, my ex ended things over the phone. I wanted to end things for a while now, but wasn’t mentally stable enough to, and so looking back I’m glad he did this, but he couldn’t have had worse timing. The last moments I had with my grandpa, the morning after (and the day of our flights home), I was thinking about the breakup, trying not to keep checking my phone to see if he had contacted me. Thankfully I already had the cherished alone time I had wanted with my grandpa.
My ex’s counsellor actually advised him that he was not ready for a relationship (he really wasn’t, but neither was I) and his counsellor, and roommates, suggested that he take a step back while focusing on his mental health. That night, without going into too much details, he was extremely unstable and I worried about him taking care of Fozzy. When I saw him that day, it was traumatic for both of us as it was a really messy breakup. This prompted me to see a counsellor and this began my recovery in what I now know was extreme codependent behaviour. I still see this counsellor around once a month, and saw him for once a week for a year. We also did trauma therapy and neurofeedback both for my medical trauma and complex childhood PTSD. That breakup encouraged me to change my life around and it ended up being the best thing that ever happened to me. To this day, I’m still on a beautiful road of self-love and acceptance.
In June 2017 I started the HCG Diet under the supervision of my Naturopath. It is a restrictive diet that I don't necessarily recommend as it did flare my POTS symptoms temporarily. It was hard and unlike anything I had ever done before. Before this, I never counted my calories except for when I did the Fast Metabolism Diet. I just ate a healthy, nonrestrictive, diet my whole life. I always had a good relationship with food but I was sick and tired of not losing my thyroid weight and decided to take matters into my own hands.
June 2017 cardiologist appointment which resulted in a prescription for Ivabradine that I didn't end up taking until January 2018.
In July 2017 I was diagnosed with adrenal fatigue by my naturopath. In 2014, my cortisol levels were double what they were supposed to be on some days, but normal on other days, so all my doctors thought it was just because of stress (it might have been!). Eventually, my adrenal glands bottomed out. Looking back, I think I developed adrenal fatigue (a controversial diagnosis) at the same time I developed my thyroid tumour.
Pictured above are some health-related gifts I got for my birthday that have been very helpful for me.
In the summer of 2017 I was also in the hospital for low potassium levels. I thought this was a new thing but after looking at my Geneticist’s report to my family doctor, I realized he specifically asked her to follow up on my chronically low potassium levels but she didn’t.
In September 2017 I went back to school FULL-TIME! This was huge for me as I had only been taking classes part-time since developing POTS.
A family trip in September 2017 to a lake a couple hours near where I live. My dad took this picture of me napping with Fozzy.
Pictured: some church leaders and their kids doing a team bonding exercise (I'm the one with the bangs on the far right in a white cardigan)- September 15 2017.
My church family lifted me up in prayer and supported me on a regular basis and I don’t know how I would have gotten this far without them.
Pictured above is me waiting outside for a cab to come get me at 3:00AM in the morning. Right before I left for the hospital, I grabbed my prayer journal so I could pray through the fear.
In the summer of 2017 I went on a short plane ride to a family reunion. It was a really empowering experience to face my fears of travelling with POTS yet again. It was a great opportunity to meet extended family members (like 3rd cousins) that I haven’t seen since I was a young kid. When I came back from the trip, the air quality where I live was extremely poor. It was like nothing I’ve ever experienced before! There were forest fires happening up north thanks to the dry heat and this was affecting our air quality. I had to wear the VogMask my Mom used in China for weeks. I had a big flare of symptoms, especially my Mast Cell symptoms, because of this. This experience lit a firey passion inside of me for environmentalism like never before. I realized that if we continue to destroy our planet at this rate, I can expect to experience this air quality chronically in the future and that just wasn’t an option for me.
Near the end of October I did the HCG diet for a short, second round, in hopes of losing the last 15lbs of my thyroid weight. I did (I gained a little bit back after my gallbladder surgery that I haven’t been able to shake). It was such a relief to start to look like my old self again. I was really excited to be doing what I can to take back control of my life, wherever possible.
I was also starting to see new pain specialists at B.C.’s “Change Pain” clinic that both my Geneticist and my Internist who diagnosed me with CFS wanted me to see. I continue to see them to this day to get ahold of my severe chronic pain.
The jean size I wore when I was my heaviest was 14 (pictured is size 12 cause I had given away my size 14 jeans at that point). After doing 2 rounds of the HCG diet, I could fit into my old size 1 and size 2 jeans. I’ve since discovered (also partially because of my 5lb weight gain post-gallbladder surgery) that size 4 jeans in the petite section (I’m 5’2” so that way I don’t have to hem my pants) fit most comfortably for me.
In November 2017 my scans showed that, as I suspected, gallstones were the culprit causing all this new pain and nausea.
In December I did my best to reserve my energy in preparation for the busy Christmas season and our upcoming Mexico appointment. I was really worried that I’d have gallbladder issues in Mexico. I prayed daily that I wouldn’t (and thankfully I didn’t! Besides mild to moderate pain and nausea).
On December 26th 2017, my brothers, their girlfriends, my Dad, and I were off to Mexico! I was really worried that the lack of rest between Christmas Day and our travel day would run me into a flare but thankfully it didn’t! Of course I did have additional fatigue and lightheadedness, which is always the case when I have busy days or do too much with no rest days in between, but nothing more than that.
I had an absolutely amazing time in Mexico and faced many fears. I also found myself doing things I haven’t done since I’ve developed POTS: like swimming (2x), playing volleyball (not running around for the ball though, I was mostly just the server), and snorkeling (which really flared my symptoms the next day but it was worth it)!
Pictured: me going to a friend’s engagement party with only a few days of rest since going to Mexico. I was exhausted and lay on their couch most of the time, and thankfully my friends joined me!
In January I finally got up the courage to try a medication my Cardiologist in Vancouver prescribed me in the summer: Ivabradine. He told me that I didn’t need to start it right away, but that he thought it would help. I had read a lot about Ivabradine and POTS and had wanted to try it. However, I was really nervous to try a new heart medication. Bisoprolol caused me to have 2 seizures a day after trying 1 pill ONCE (until I increased my Gabapentin) in 2014, calcium channel blockers didn’t work, and I just had a bad history with trying new meds. One day I was feeling really sick from my gallbladder and decided I had nothing to lose by trying Ivabradine, so I finally did. Ivabradine works differently than beta-blockers in that it doesn’t reduce the blood pressure, just Tachycardia, which is theoretically perfect for those with POTS. Ivabradine also takes a couple weeks to work. So for the first few weeks I felt more short of breath than usual, had more Tachycardia, palpitations, and chest pain. However, I immediately noticed that I had more energy and a better time sleeping. I even stopped having my daily couple-hour nap! After a month, I wish I had started earlier!
January and February 2018 I felt the best I’ve felt since developing POTS in January 2018. It gave me so much hope. Besides my gallbladder attacks, and the mild-to-moderate pain and nausea I had with eating (due to my gallbladder issues), I felt like I could function.
On February 15th 2018, my grandpa passed away, one day before my brothers and I had our pre-scheduled flights to come out to see him. One day. That was hard. But the nurse told my mom that happens often, it’s like internally they don’t want their loved ones to be heartbroken seeing them like that. My mom and my grandma (his wife) were in the room when it happened. God had been preparing my heart for this and I knew it was coming.
When my mom called me to let me know, I fell to my knees and played the song “Highest Praise” by Amanda Cook. The week earlier God told me I would need that song. My Grandpa passed away from bone cancer and Alzheimer’s. The month before he passed away, he didn’t know who my grandma (his wife for 50+ years) was, but he never forgot who God was.
My Grandpa would often forget where he was. When he’d ask, one of my mom’s sisters, my Auntie Debbie, would respond saying “God is making room for you in Heaven.” And he would always say “oh, that’ll be nice”He stopped talking and stopped swallowing on his own, but every night he would verbally pray out loud for “lost souls.” That weekend we had the funeral, which was lovely and not very sad, because I knew my Grandpa was home. I wrote him a long letter filled with promises I’ve kept, and words I wish I had said, and it was tucked in the urn with his ashes once he was cremated.
The surgery went smoothly. I only had to take narcotics the day of the surgery, and 1 pill the following morning. After that, the pain was bearable. The day of the surgery, I came home, napped, and then worked on homework. The following day I did the same but was hit by a wave of what felt like being high and a huge hangover at once (my daily POTS symptoms feel like this but this was even worse). From what my doctor assumed, it was how my body was processing anesthesia (delayed). I had a really tough week and after just a week of being mostly bedridden, I already felt the effects of being deconditioned. This was extremely discouraging and reinforced how important reconditioning is.
Weeks later I started having mild digestive issues that corrected themselves in a month. I now don’t have any digestive issues, besides my original food sensitivities and issues when reacting to them. I also have random nausea with POTS but that’s it.
I had to pull out the old oxygen machine (not pure oxygen) when my levels dropped too low when I was recovering from my gallbladder surgery.
Thankfully my mom, my dad, and 2 of my brothers (one was travelling) stayed with me so I wasn’t alone for a week after my surgery. Gallbladder surgery itself was a piece of cake, but my reaction to anesthesia, and the way it flared my POTS, left me housebound. It was actually really discouraging because after 2 days of doing pretty well, I was randomly hit with a huge flare and it reminded me of when I was first sick. I found myself trapped, dependent, and struggling to find hope. Thankfully, I had much more wisdom this short time around, and access to much more hope through my deeper relationship with God. However, it felt like a full circle being back in that situation for even just a week.
I slowly recovered from where I was and ended up only getting sick with a cold/flu on three separate occasions during this cold/flu season which is HUGE for me. In the previous years, I’d get sick with any virus that came close to me, it would flare my symptoms for weeks, and just when I started seeing the light at the end of the tunnel, I’d get sick again. Seeing how little I got sick with a cold or flu this year gave me a lot of hope that the lifestyle and holistic protocols I’m doing, are in fact making a difference in improving my immune system.
March 7th 2018: Some leaders of my church (including me) praying together on the first Wednesday over every month. I'm on the left side with a pink circle scarf.
Today, I am where I never thought I would be with POTS. I still have daily, debilitating symptoms, but I’m out in the world. I’m no longer drowning. I’m no longer suffering with depression. I’m no longer hopeless. I have a new identity and am making the most of my life with chronic illness. I still have rough days, but they aren’t half as bad as the days I had in 2014.
Writing this post series has been a humbling experience. It’s required me to look back on the most traumatic events of my life but it’s also reminded me of how far I’ve come.
I still remember the days I prayed for what I have now.
I want to thank every single person who has spent the time and energy to read my story. I’ve been meaning to share it for a while, but it’s been a daunting task. I’m so glad that it’s finally out there. I hope you find hope in my story of transformation. I hope you realize that you’re not alone.
Some memories I've made so far in 2018.
I often get asked what I believe has helped me the most on my POTS journey, and so I thought I'd comprise an over-simplified list to address this question:
-Finding the right combinations of medications for me.
-Finding the cause of my POTS (EDS) and treating that (physiotherapy and pain management).
-Dr. Levine’s POTS exercise protocol.
-Midodrine (it didn’t help me when I was bedridden though).
-Making sure I’m not deficient in any vitamins and ensuring they’re always at their optimal levels.
-Treating my MCAD with Ranitidine and Cetirizine.
-Treating Candida overgrowth and leaky gut.
-Treating adrenal fatigue.
-Ocassional saline infusions to help me get through flares.
-Making lifestyle changes that involved minimalism (simplifying my physical belongings and mental burdens), an anti-inflammatory vegan diet (I have tried many diets), and counselling, neurofeedback, and trauma therapy to address my medical PTSD and help me adjust to this new life.
-Switching from Metoprolol to Ivabradine (this won’t necessarily be as big of a help for everyone as it has for me).
-Compression socks and tights.
-My TENS machine and other products that help with temporary relief.