My POTS story pt. 5
Thank you to all of you who have been reading my POTS story! In January 2014 I developed POTS and became bedridden and housebound. I am sharing my story to share what's worked for me, what hasn't, and to provide some hope. If you haven't already, you can read parts one, two, three, and four of my POTS journey on this blog.
In part 4 of my POTS story I concluded by talking about the best decision I ever made: to start my own "exercise program." I had become really deconditioned and had a lot of muscle atrophy from being bedridden that was adding to my already debilitating symptoms. Looking back, this moment was when I really reclaimed my health and took control over my situation.
I had reached the end of how far modern medicine could bring me at this time. I was terrified. I was convinced that I would never get better. It's here that I realized that I needed to take matters into my own hands.
Chronic illness is a lonely journey. I took this photo when I first started walking to my mom’s room and back all by myself. I remember peeking out the blinds of her bedroom window for the first time since I got sick. At first, I was proud of how far I walked on my own. Then, as I looked outside, my reality came crashing down on me. Outside I saw neighbours walking their dog and I remember thinking “they don’t know someone is trapped inside here. I wish I could walk a dog. I wish I could be on that side of the glass window.” The world was passing me by and there was nothing I could do about it. What first was a victory felt like something no longer worth being proud of.
Fighting my POTS symptoms and proper treatment was the hardest thing I’ve ever done. Reconditioning was definitely the second hardest. Trying to find that balance between pushing myself and not pushing myself too hard that I crash was definitely a process. What helped me was making slow progressions each week (like 30 seconds more on my recumbent bike or walking 50 more steps). I’d complete that goal every day of the week no matter how I was feeling and then increase my goal by a little bit at the end of that week.
After receiving an accurate diagnosis of POTS, I found myself stuck between specialists. If it weren't for my mom spending all of her time and energy fighting for my health, I don't know what I would have done. I would be referred to a cardiologist just to get there and have them say "POTS isn't a cardiac issue, it's a neurological one." I'd then find myself at a neurologist appointment just to get there and have them say "POTS isn't a neurology issue, it's a cardiac one." No one wanted to take responsibility for me, no one really knew how.
At this time, I didn't have the energy to respond to all of my loved one's caring messages asking how I was doing, so I made a closed Facebook group called "Sarah's Health Updates" to update everyone at once. I used this group for around a year.
In the mean time, we saw private specialists out-of-pocket, naturopaths, osteopaths, and every kind of alternative doctor we could find. We treated leaky gut syndrome and candida overgrowth (we later found out that I didn't actually have candida overgrowth until 2016 though). With every new appointment I found myself learning more but not feeling any better.
In the midst of these weekly appointments, severe suffering, anxiety (undiagnosed PTSD at this time), and a loss of independence, I found myself with a very financially privileged issue to have, but one that brought me so much anxiety. My Dad booked a trip for my brothers, my boyfriend at the time, and I to go to Hawaii in December 2014 . He booked this trip to us before I got sick. The trip took place 11 months after being sick. It took place when I was still mostly bedridden and almost entirely housebound.
You see, my family loves to travel. We’d go on multiple small trips a year and a big one every couple of years. I lived to travel. But I was absolutely dreading the idea of this trip. My mom kept reminding me that I could cancel but I felt tons of guilt at the thought of that. It would be my boyfriend’s first time out of the country and my dad wouldn’t get a lot of his money back. I’d cry to my dad about how worried I was and he kept saying (he meant well) “you’ll be better before then.” I hoped so but I had this deep fear and intuition that told me otherwise.
Months into the exercise program I made myself, I created a new set of goals that I taped to the wall beside my bed. These goals were to prepare me for that Hawaii trip.
I took this picture in November 2014, when I had already accomplished some of the goals.
There are a few tools that helped me with my reconditioning process. The first three are pictured below:
1. My EmWave 2 program (I now have the EmWave Pro which I recommend).
2. My FitBit clip (I now have the FitBit Charge HR).
3. These electric leg compression garments.
4. My TENS machine (I put the pads on my calves to help pump the blood away from my legs to prevent blood pooling and to strengthen my calves).
5. A recumbent bike.
6. Mullein tea: helped me a ton with the shortness of breath caused by reconditioning (and sometimes just POTS in general).
Every time I “exercised” I’d have a big CFS crash and have to be on oxygen. These were one of my scariest symptoms and experiences. It hurt too much to inhale and exhale on my own, because I was so deeply fatigued. My blood oxygen levels would drop, I’d forget simple things like my middle name or how to use my phone, and would just lie still, focusing on my breath for hours. The EmWave2 program ended helping so much with this. I ended up starting to use this helpful hand-held device every time I wanted to change positions (lying down to sitting, sitting to standing, going to an appointment), when I exercised, and when I crashed. It became so helpful that once I was with my boyfriend at the time at my Mom’s “retirement condo” at the beach (20 minutes away from where she lived and I was staying while sick) so I could have a change of scenery while bedridden (my cabin fever was so bad), and I forgot my device there this one time. I knew I’d suffer so much more if we didn’t go back to get it so my boyfriend at the time thankfully did.
Another resource that helped me immensely was this book "POTS Together We Stand." This book helped me figure out what to be tested for, how to travel with POTS, that a lot of my symptoms doctors couldn't figure out the cause of were actually caused by POTS, and it helped me understand what I was experiencing on an emotional level: grief (the chapter on grief inspired this blog post of mine). I highly recommend this book to anyone who has been recently diagnosed with POTS.
I continued to bounce from doctor to doctor, trying out every diet and natural protocol I could find, and searching for a cause of my POTS. I had private MRI’s done that showed multiple disc herniations in my neck, mild cervical stenosis, and mild to moderate scoliosis (we knew about the scoliosis since I was a kid though). It didn’t show anything that could be causing my POTS symptoms, though.
At this point I'd stay in bed the entire time except for when I was doing my "exercise protocol" (most of which was done lying down in bed), going to the washroom beside my room for 30 seconds max, or having a 30 second (not exaggerating, it was like a race) shower sitting down on the floor of the tub, or going to a doctor's appointment. My mom kept asking me if I wanted an electric wheelchair, or at least one that wasn't a transfer chair, but I didn't want one because I was convinced I wouldn't be sick for "that long." I ended up needing that transfer chair for almost 2 years, a lot longer than I ever anticipated, but I no longer need it.
All the health-related things I kept in my purse at the time. My symptoms were so unpredictable in 2014.
Every moment of every day in 2014 was spent trying to extinguish fires. I was exhausted beyond reason, I was mentally drained, I was traumatized, and I was suicidal. But no one but my mom and my boyfriend knew, and even then, they just saw the half of it. I had a journal at the time and wrote in it whenever I could muster up the strength to do so. I wish I had kept it but I ended up ripping it to shreds in 2016 because it was too traumatizing to look at. I begged God to take away my illness or let me die. Everything hurt. Everything was too much. But slowly, I kept on surviving, seeing no progress, having mental breakdowns, until slowly those steps added up. On June 28th 2014 I posted my first picture to my @StrongerThanPots Instagram. I had no intention or idea that it would become what it has today.
One day my boyfriend at the time mentioned that he was going to be doing something called “Freedom Session” at our church in the Fall. He had still been going to church and keeping me updated but I was unable to attend. I knew very little about “Freedom Session” but knew I wanted to join. I assumed it would be like the other short-term classes I had joined at the church in the past that taught me more about God and inspired me to feel closer to Him. I needed more of that so desperately. I was isolated (although I had visitors once every couple weeks), so out of it, and felt so distant from God. I was convinced that I needed to go and had no idea what I had really signed up until that first day in late September. But after my boyfriend at the time told me about this, being able to attend became a new goal of mine. I asked my pastors (who I was speaking to regularly during this time in my life. They kept me sane) how long it would be each night so I knew how long I’d have to sit up. It was around 2-3 hours. So I started training in Spring 2014 to sit up for 1 minute a day with the goal of sitting up for 2-3 hours in a row in Fall 2014.
On July 1st 2014 I had my first birthday since becoming sick. I was still mostly bedridden, but my family put up streamers and made it really special. I told everyone that I wanted to go to my mom’s “retirement condo” at the beach, the evening of my birthday so I could be bedridden with a different view. I had done this a couple times since becoming sick. Since my birthday is on Canada Day, I knew there would also be a Canada Day parade I would be able to see from bed.
I went there around dinner time. I was still so deconditioned that my boyfriend at the time had to push me in my wheelchair from the car to the elevator door, which was located directly beside our parking spot, and then from the elevator to the bed- which would approximately involve being vertical for 2 minutes.
When I got there, 3 of my best friends surprised us there and had decorated my mom’s condo beforehand. My love tank felt so full. On a really hard day- my first birthday with chronic illness, my best friends went above and beyond to make it special. The energy it took me to be a passenger in the car, be wheeled to the bed, and say hi to everyone made it so I fell asleep. I woke up when someone picked up the fish and chips they ordered. I had fish and chips, lay on the balcony with my friends while we watched the Canada Day parade and fireworks, and went to bed. It was as good of a day as it could’ve been.
I ended up waking up in the middle of the night, throwing up everything in my stomach, because up until this point I had eaten only gluten-free, dairy-free, refined-sugar-free, and nonprocessed food. I also hadn’t touched caffeine since I got sick (but I introduced that later when the fatigue became too much to bear).
In July my mom went on a trip with her sister to China for a month. She booked the trip before I got sick and kept insisting that she doesn't have to go, but I would have felt bad if she cancelled, so I insisted she go. Both my mom and my boyfriend at the time had become my "safe people" -they were the people I physically relied on when I was too sick to take care of myself. They were the only two people who had seen it all. They could see in my face that I was experiencing a symptom before I was even capable of telling them, and they'd know exactly what to do. I was super anxious in the weeks leading up to my mom’s trip. My mom had scheduled it so my boyfriend at the time, my brothers, or my nurse would be home with me so I would never be alone, but I still was consumed by anxiety. I had developed a severe attachment to her in response to my physical dependence on her. I felt like a child and in some ways behaved like one.
A week and a half into her trip and I started to feel more confident and less attached to her. One thing I’ve learned during my journey with chronic illness is that the only way to get over a fear is to face it. I felt fearless before developing chronic illness, but with each new trauma came a new fear. Throughout July 2014, I started going on lots of drives to places in nature so I could get a change in scenery. I was still mostly bedridden but I'd recline my passenger car seat and just stay in the car or we'd put a blanket on the beach and I'd lie down. I posted a lot of pictures on my personal Instagram account during this time that made my life look a lot better than it actually was. I did it for myself, because I thought I'd look back on the pictures of 2014 and not see through the obvious inauthenticity, and instead just see pretty pictures of times at the beach. But I also did it to keep up a pretty Instagram feed. I did this in one way or another until 2016 (my intentions shifted and became more authentic after this). It was my way of trying to subconsciously convince myself that my life was worth living.
When my mom got back from her trip, we continued the search for better treatment. In August 2014 I finally got a disabled parking pass. I was hesitant to get one for the same reasons I didn’t want a wheelchair, but it proved to be extremely useful. Around this time, my mom and I had also asked my family doctor if she could request Dr. Levine's POTS exercise protocol from him and refer me to cardiac rehab. She did both. My family doctor forwarded my mom the e-mail Dr. Levine sent her, which included all necessary information, 2 weeks later. I didn't have my initial consultation for cardiac rehab until the Winter, but I used the information I had about the Levine protocol to help me guide my exercises. When I started Cardiac Rehab, I had just started doing the first pre-month of Dr. Levine's exercise protocol. The "pre-months" are dedicated for those who are bedridden and can't start the actual months of the program yet. I was so deconditioned, and my muscles were so atrophied, that it took around 8 months of my own "exercise program" before I could even start this first pre-month. I ended up doing the first pre-month for 3 months and the second for 3 months.
I still have a very poor memory to this day, so I've relied on the dates of pictures I've taken or things I've posted to my @StrongerThanPots Instagram account to help piece together the puzzles of my story. In August 2014 I posted on my @StrongerThanPots account saying "Dr. Satish Raj ('Associate Professor of Medicine and Pharmacology at the Vanderbilt University Autonomic Dysfunction Center') is a POTS doctor who's moving a province away from me!! There's only one POTS specialist in BC (whom I haven't seen yet) so it's good to know that if things don't work out with him, I won't have to spend $11,000 to go to the States!"
On September 3rd my endocrinologist sent me to a lab to do a lying down and standing norepinephrine blood test to test for Hyperadrenergic POTS. I had asked her if she would do this because my BP was randomly starting to spike and I wasn't on Midodrine or Florinef at the time (my BP eventually stabilized). She agreed to it and told me that the lab had only done that test 1 other time before. My endocrinologist did a lot of research to make sure they were doing the test properly. It came back negative. Now that I look back, I think the process of reconditioning my body was what threw off my BP, HR, and caused a ton of different kinds of chest pain (which was one of the main reasons I often ended up in the hospital because the pain was too intense. One type of chest pain was caused by costochondritis) and shortness of breath. All of this stabilized (but didn't cure itself) over time.
In late September I started the Freedom Session program at my church. I was so anxious to go that evening, I remember it so distinctly. I had to take a quarter of an Ativan, which I hadn’t had to do in a while. I was so anxious: “what if I pass out? What if I have a seizure?” That anxiety continued throughout the night but I did it! I’ve since realized that everything I did, I did afraid, but I did it anyway. I did it before I thought I was ready. The only way to conquer fear is to face it, and oftentimes what we make it up to be in our heads is a lot scarier than the thing we fear itself.
I remember how hopeful I felt after that first night. It was the first time I had left my house to do something "social" since becoming sick, and it was the first time I was able to make it to a Church function since January.
Freedom Session ended up being a once-a-week meeting that went on for 9 months. It's a healing program that was designed by a pastor in my community who used to be an Atheist who struggled immensely with Alcoholism. He designed this 9 month program in a 12-step kind of way. This program isn't just designed for addiction, though, it's designed to find healing in any area of life and to start living an "authentic life" (the 3rd and final workbook of the program is called "authentic living"). It's interesting because I didn't know why I was there at first. Most people came there with a very obvious issue they wanted to work through. Both of my pastors at my old Church (Life Church-where I became a born-again Christian) did the program just to help them continue to live an authentic life, but most people don't commit to a 9 month, once-a-week, intense program with lots of homework unless they really need it.
This program is where I met 3 of my best friends. Well, I met 2 of them before but only a couple months before getting sick and so they were still just acquaintances before Freedom Session (although 1 of them visited me when I was bedridden). I always say that I’m lucky enough to have 2 sets of best friends- one set from high-school that I still talk to daily, and the other consists of these 3 women from my old church. These women all know what it’s like to really endure and suffer physically and mentally. Amber is one of these 3 women and she has Type 1 Diabetes, Fibromyalgia, brain lesions that are possibly M.S., autonomic Neuropathy, ulcerative colitis, hypothyroidism, and severe depression and anxiety. I’ve seen her struggle immensely since I’ve met her. But nowadays she’s working part-time, being an amazing single-mom to her 10-year-old son, and doing a lot better mentally than ever before. Seeing her live her life, work, be a mom, and carry herself with such grace in the midst of all of these difficulties has been inspirational.
Like most women in my Freedom Session “small group,” I wasn’t entirely sure why I was there. We didn’t have one big issue to address like many people seemed to, we were just all dissatisfied with our lives and struggling to one extent or another. As the months unraveled, I started my recovery of codependency. I started forgiving people unconditionally. I started feeling whole.
Click here to learn more about Freedom Session and to find a Church near you that hosts the program.
I slowly started going out to a friend's for an hour or two in October 2014. I'd lie down on their couch but this was a huge victory for me. Still mostly bedridden, just bedridden somewhere else. I had developed social anxiety. I never would have imagined that an extroverted, outgoing, people-person like me would have ever developed social anxiety. But I felt unrelatable, I felt detached from reality because of my brain fog, and I felt scared that my symptoms would flare while I was somewhere besides my mom's house. My boyfriend at the time came with me to all of these places because he was my "safe person" and I was too anxious to go anywhere without him or my mom there by my side (since they new my condition, and how to help, much better than anyone else). During the Fall, until graduation 9 months later, I I continued Freedom Session weekly and to my surprise, rarely missed a session. I was one of the few people who made it from start-to-finish. Everyone else had excuses they could lean back on, like work, kids, family, etc. I had nothing to do but fight for my health and lie down all day. While Freedom Session was seen as burdensome for many people, to me it was the only thing that brought me life and the only thing (besides doctor appointments) in my schedule. This weekly commitment kept me going.
In early November 2014 I started cardiac rehab. As I mentioned earlier, I had just started being able to do the first pre-month in Dr. Levine's exercise protocol when cardiac rehab started up. It took me 8 months of my own "exercise program" to work myself up to doing the first pre-month, that's how deconditioned I was. The program was 2x a week, was 15 minutes from my mom's house, and was free. The cardiac nurse and exercise therapist helped me immensely. They learned all about the Levine protocol and created a strength-exercise program for me to do. They never pushed me too hard, but just enough. I worried that I wouldn't be able to keep up with the weekly commitment but to my surprise, I only missed a couple times. One of those times was because I fainted as soon as I walked into cardiac rehab and they put me on a stretcher and wheeled me over to the hospital in the same parking lot.
I continued my own exercise protocol on the days I wasn't in cardiac rehab. It was one of the hardest thing I ever had to do, but also the most rewarding.
A picture I took on Giving Tuesday in 2014.
And when I say most rewarding, I mean it..
I was working hard to be able to go to Hawaii after Christmas, but every day I was terrified. I wanted to cancel but I didn’t want to disappoint my family. They assured me it would be fine, but I wasn’t convinced. I was so scared I’d end up in the hospital when I was in the States and make my family bankrupt with hospital bills. My brothers, dad, and boyfriend at the time were all covered by travelers insurance. However, the travel agent informed my dad that there’s no way they’d pay for issues caused by pre-existing conditions.
I had my first Christmas as being sick and it was bittersweet. Christmas is my favourite holiday by far, but I couldn’t participate in as many family traditions as usual. That was partially because of my symptoms but also partially because I was trying to conserve my energy in preparation for Hawaii.
I ended up making it to Hawaii and went the entire 5 days without any major issues. It was my first time flying with POTS and that was scary. The first evening, we were at dinner (as I could now sit up for around 5-6 hours if necessary) and I was apparently staring blankly into thin air and wouldn’t reply when talked to. I remember feeling a lot of pressure in my head. My boyfriend at the time noticed it immediately and wheeled me back to our hotel room where I lay down and cried for the rest of the night. I brought my wrist BP cuff on the trip and had really high BP after the flight that trip.
My doctors never ended up fully diagnosing what these episodes were. My EEG’s and sleep deprivation EEG’s came back abnormal but they weren’t conclusive enough to really know what was going on. Words like “temporal lobe seizures” and “autonomic seizures” were thrown around but nothing was ever diagnosed. They slowly went away and I no longer have these episodes thankfuly.
That Hawaii trip was healing for me. Even though I was extremely symptomatic and anxious the entire time, I conquered so many fears. I spent time with my family, felt empowered, and felt so much better in the warmth (not heat! My POTS symptoms are much worse in the heat). I even went in the ocean once for less than 3 minutes but ended up feeling worse that day because I overdid it.
I came back feeling empowered but my fear of travelling continued until January 2018.
Throughout this whole journey, I had been very eager to get back to school. Going back to school, to me, meant that I had some kind of normalcy back in my life. I loved university, I loved what I was learning, and I was good at what I was learning. In February 2014 I withdrew from my full course load of classes, after being bedridden for 3 weeks and realizing there was no way I could catch up on course material, even if I were miraculously healed the next day. With each passing semester I was extremely frustrated when I couldn’t go back to school. Summer 2014 and Fall 2014 semesters had come and gone and I still wasn’t enrolled in courses. Looking back, I was so hard on myself for not being in school. I was only out of school for 3 semesters. However, university represented something to me: it represented working toward something, it represented having hope in my future, and it represented the scholarly part of my identity. In January 2015 I started to take one university class online. It was an extremely hard thing to do, considering I still had severe brain fog and was mostly bedridden. A couple times I couldn’t even read the words in my textbook because of blurry vision so my brother generously read my textbook to me.
The time had come to see Dr. Satish Raj in Calgary. I was so excited that a POTS specialist had moved just a 2 hour plane ride away from me! By this time, I had doctors who knew what POTS was, and were treating it for me, but they basically just knew the Wikipedia definition of POTS. These doctors knew less about POTS than I did. Dr. Raj knew so much more than both my current doctors and I.
Pictured is a post I made on January 13th 2015 when I saw Dr. Raj for the first time.
My appointment with Dr. Raj gave me so much hope. He diagnosed me with EDS, according to the Beighton criteria. He also realized that my debilitating fatigue (my worst symptom at the time) was being caused by more than just POTS. He sent me for a sleep study, referred me to doctors in my own area, prescribed me Modafinil (a narcolepsy medication that gave me my life back), and said he’d follow up with me and do autonomic testing when they had the equipment. He was a God-sent. What are the chances that a POTS specialist would move so close to me the year I got sick?
When I came back home, I noticed that my family doctor started to treat me differently ever since receiving Dr. Raj's report. Dr. Raj's report was comprehensive, included my Beighton score (7/9), information about POTS, and instructions for my family doctor. My family doctor now realized that I was an educated, but desperate, patient that she could trust. Before that, she was relying on a 1 paragraph report from an ER doctor telling her that I had POTS (which she hadn't heard of before). After she received Dr. Raj's report, my mom's personal health care, and my own, improved drastically. My family doctor (who is also my mom's) ended up referring my mom to a Rheumatologist who diagnosed her with Classical EDS.
A collage I made and posted on January 20th 2015.
January 20th 2015 marked 1 year of me being sick with POTS. It was a heart-wrenching day. I couldn't believe that I had been sick for 1 year. I had spent 1 year almost entirely in bed. I never knew people did that. I never knew people had to do that. I felt trapped. 365 days gone, yet I was still so out of it that it felt like it had only been a month.
In part 4 of my story I talked about how my mom and I were struggling to find doctors who knew anything about POTS. We learned that there were doctors who treated POTS but they worked out of B.C. Children's Hospital and because I was over 18, they wouldn't see me. However, after seeing Dr. Raj, he called up a geneticist he knew at B.C. Children's Hospital who did a favour to him by having an appointment with me. I was amazed at how they had packages of information about Dysautonomia to give me- I didn't have to explain what it was to them for once. Unfortunately she didn't do any genetic testing but did a poor man's tilt table test (which I had done for doctors dozens of times at this point) and scored me a 7/9 for the Beighton score. Unfortunately I couldn't see this doctor more than once, but she did refer me to other specialists she thought might be helpful, including the geneticist my mom and I continue to see now.
In March 2015 I went to the “POTS Treatment Center” in Dallas, Texas. Overall I had an amazing experience which you can read more about here. The tools I learned at the 2 weeks I was at the Center really helped me move forward with confidence. As my mom often says, “it’s another tool in your toolbox of treating POTS.” It wasn’t a cure for me, but it’s a huge help.
I still use Heartmath's EmWave Pro program and their "Innerbalance" smartphone program I've since got, on a regular basis.
A picture I made and posted to my POTS account at the time. The bottom half is a fact someone else made. I attached it to pictures of the distances I had to travel for treatment.
I got this bumper sticker for my car because I had started getting very dirty looks when my mom and I would get out and I wouldn’t be in a wheelchair. Thankfully, this awesome bumper sticker put an end to all weird stares and harassment!
In May 2015, I graduated from cardiac rehab. When I started cardiac rehab in November, my mom had to wheel me in and I could barely stay sitting, let alone pedalling, for the entire hour and a half. When I graduated 6 months later, I was able to walk in and out of the building all by myself. This was huge.
It was around this time that I also graduated Freedom Session and started going to church again. I could go to Freedom Session and cardiac rehab weekly, but that’s because Freedom Session was in the evening and cardiac rehab was in the afternoon. My symptoms were so much worse in the morning and I had to build up strength to be able to get up earlier than usual, let alone leave the house and do something for a couple hours.
In the Spring of 2015 I was also diagnosed with Mast Cell Activation Disorder (MCAD). Prior to this, we suspected I might have this. I was already taking Zantac at home daily because it helped with my intense food sensitivities and added Reactin (Zyrtec in the States) daily after my trip to Dallas that aggravated my reactions (I never had seasonal allergies before or since Dallas). We thought the Reactin might help because we had read about Zantac and Reactin being H1 and H2 mast cell stabilizers. I ran this by the doctor at the POTS Treatment Center in Dallas and she thought it was a good idea. It ended up helping a lot.
The immunologist gave me a prescription for both and had me take them at a higher dose. He tested me for all kinds of allergies because I reacted to so many things, but none of them ended up being "true allergies," but instead, a product of MCAD.
In early June 2015 I gained 20lbs from what I thought was a new birth control my naturopath put me on for acne. My boyfriend and my mom both didn’t notice and I know they weren’t just saying that. I ended up collapsing twice on this new birth control- one day (and ER visit) after another, so I was taken off of it (but the weight didn’t go anywhere).
It was at the end of June that my boyfriend at the time and I broke up after a 3 year relationship. We had been struggling since before I got sick but put those issues aside when I got sick, but they had resurfaced. It was a very intense relationship in the best and worst of ways. He stayed with me when I was bedridden and became a huge source of unhealthy attachment to me. I had a very weak identity since developing POTS, and a lot of self-hatred, so I felt like he deserved a Purple Heart for bravery for staying with me while I was sick. I had become very codependent. I tried to break up with him the week prior but he cried and promised he would change, I believed him, then he broke up with me a week later and I acted like it was the worst thing ever (as I truly believed it was). All my abandonment issues were steering the wheel and I felt like I was in the trunk with no control. My anxiety, and my symptoms, flared.
This was the week before my birthday.
I was riding this anxious high that temporarily gave me more energy so I learned how to drive short distances again, I became more passionate about making my own healthy food (instead of allowing my mom to cook for me), and I slowly started going out more.
I took the summer off from courses because I wanted to focus entirely on my health so I could work to go back to school in the Fall (which I did!).
In July 2015 my mom and I drove a couple hours to get an upright MRI done to check for Chiari Malformarion and Craniocervical Instsbility (CCI). We then saw a brain surgeon to see what he thought. He said no to Chiari Malformation but that there was some instability in my neck (but he didn’t say Craniocervical Instability and didn’t seem to know much about the condition).
I sent off CD’s of my MRI’s to the Chiari Institute and one other Chiari specialist before confidently ruling this out. Since I had daily migraines and neck pain since grade 8, everyone in the Facebook POTS & Chiari support groups were convinced that I had it. Some of them even asked to look at my MRI pictures (and I was desperate enough to have any kind of insight, direction, and help) and some of them thought I had it. It ended up being Craniocervical Instability (CCI) and not Chiari.
I was determined to rule out any co-morbid conditions that could possibly be aggravating my POTS. I had a diagnosis of EDS, POTS, and MCAD but I knew there were many possible comorbid conditions that could be caused by my EDS. With the help of my great doctors, I ruled out Chiari Malformation, Lyme Disease, Sjogren's, and any other tick-borne illnesses (meaning I don't have any of those 3 conditions). This was a huge sigh of relief. I was very active on Facebook POTS support groups and had heard so much about patients being left undiagnosed for years with a co-morbid condition that, once treated, helped their POTS. So once I ruled out all possible causes of POTS as listed in the book "POTS: Together We Stand," I felt more empowered sine we were now certain of what we were dealing with.
In August 2015 I was still just doing the 1st month of Dr. Levine's exercise protocol. I had done the 2 pre-months and extended each one for a lot longer than a month. I continued to complete the Levine protocol this way.
In August I went on a small weekend getaway to the island with my family. It was amazing. We did a lot so I was in my wheelchair. When I got home, family my doctor prescribed me Doxycycline for acne and my neurologist prescribed me Topamax. He was hoping that it would help my migraines and any seizure-like activity. I had a few of these staring-into-thin-air episodes since, but I had auras warning me for an hour beforehand so I wasn’t at risk when driving (I started driving in June but the episodes stopped for the most part in August).
I remember switching to the basement of my mom’s place when we got back from the island because it was too hot where I was staying on the top floor. I remember being bedridden for a week after that trip because of how much energy it took out of me. I was also trying Doxycycline and Topamax at the same time.
At the end of August 2015 I moved back into the apartment I was living in (that my dad owns) before I got sick with POTS, and the apartment I’m still living in. This was a huge step that my mom didn’t feel like I was ready for, as I still was in a wheelchair (a transfer chair no less, in which I needed someone to push me around in) for walks of any length, but the breakup propelled me forward. I needed independence, or at least, a sense of it. I started taking 2 courses in the Fall: one that was done online and one that required me to go to the school (that I was living less than 5 minutes away from) for 2 hours a week. Besides this, my doctors appointments, and church, I wasn’t doing much of anything besides resting and exercising in my spare time. I was trying to be more social but I had definitely become very depressed.
This is my brother Donovan delivering the recumbent bike that I used at my mom’s to my apartment. My mom had it before I got sick but barely used it so she said I could have it.
Topamax ended up causing intense suicidal ideation (the only medication that ever did that) so I had to come off of it. I still felt depressed, and every week I had suicidal ideation, but I didn’t think I was actually ever going to do it. On Topamax it scared me because I thought I might. I didn’t realize it was the Topamax causing it until 2 weeks in.
I saw a cardiologist in the Fall of 2015 in my city. My family doctor didn't feel comfortable managing my Metoprolol and felt like I needed someone closer to home to work with Dr. Raj. This cardiologist (who I still see) prescribed Midodrine for me. I was hesitant to try it because it didn't help, and at 5mg made me feel worse, when I was in the hospital. But on half of a 2.5mg dose it gave me more energy, helped me be upright more (which helped with reconditioning, which I was, and am still to this day continuing to do), and helped me be able to do more. I slowly increased the medication as he instructed, and am now on half of a 2.5mg tablet 6x a day.
In Fall of 2015, I still hadn’t lost the 20lbs I gained in June and began to gain weight at an alarming weight. In just a few months I found myself 50+ lbs heavier than the weight I was when I first got sick in 2014, and had no changes to diet or exercise. I was confused, embarrassed, and self-conscious. I went to my endocrinologist who tested my thyroid levels. They came back only a tiny bit abnormal so she ruled out thyroid issues but said she’d check them again in a few months. I also had developed severe cystic acne on my shoulders, back, and chest at this time, was no longer getting a period (I had a consistent period my whole life and it randomly stopped for 8 months starting in September 2014), developed insomnia, developed some new neurological symptoms, and started lactating from my breasts. They ended up finding a cyst that was benign and doctors do not think this was the cause of that issue. I was also on no new medications (Midodrine and Modafinil were my newest medications that I had been on for months before this issue developed).
My brother Daniel picking me up from my apartment late at night to drive me to the hospital near me.
I now lived (and still do) 45 minutes away from my family. It was a huge adjustment. My mom still always had her phone on loud in case I needed her (which I often still did), and I knew my family would be there as soon as possible if I needed them, but I had to start learning what was an emergency and what was just urgent in terms of my symptoms. I didn’t want to call a family member to drive out all this way unless it was an absolute emergency.
Going to the hospital by myself was empowering. It was a huge learning curve to figure out which hospitals were closest (as I live in a different city than my mom), to take a taxi instead of an ambulance unless I don't think I'll last 15 more minutes without medical intervention, and how to advocate for my health in the ER when I felt too weak to speak. At this point, I had great doctors and didn't have to fight to be heard because doctors believed me wherever I went (I attribute this to my extensive medical history, how educated I am about my illnesses, and how I am respectful and trustworthy in my relationship with my doctors). However, I still had to explain what my health goals were, and not accept "let's just wait and see" as appropriate medical advice when I was literally losing my peripheral vision (temporarily) and could not "wait and see."
As Dr. Raj suggested, I had a sleep study done to make sure my fatigue wasn’t being cause by sleep apnea. The results came back showing no signs of sleep apnea, but later on I was sent for a more extensive sleep study and daytime sleepiness test.
And that's 2015 for ya!
2014 and 2015 were pure survival. Although there we progress in symptom management, and how much I could do, I was suffering immensely. 2014 was definitely the worst year of my life.
2014 and 2015 felt like I was in a boat during a storm and every second was spent trying to patch up a leak, stabilize the boat, and trying to get ahead of capsizing by dumping the water in the boat over the side.
In 2016 the storm calmed. It didn’t end, it still hasn’t. But it calmed. 2016 was spent being still, trying not to do anything that could cause the boat to start sinking again. I wasn’t just passively being still and not doing anything though, I just didn’t take too many risks because I knew my body needed to stabilize. I still slowly made important changes, tried new treatment options, and went to school. I still pushed my body. But 2016 was a year of decompression for me. As I’ve shared in the past, I once read this article that explained what to do when you first get a rescue dog. It recommended living out a very simple, slow, and consistent schedule with the new dog for the first 2 weeks as to not overwhelm them. It recommended not introducing them to all your family and friends, bringing them to dog parks, and providing too much mental stimulation because although you are excited about this new change, the dog is scared. The article explained how the dog needed at least 2 weeks to ”decompress” from the trauma. I now realize that what I was doing was decompressing in 2016.
2017 was a year of hope. I started recovering from codependency, feeling purposeful, and feeling like my situation wasn’t my final destination. I grew closer to God than ever before.
2018 is a year of holistic healing for me. I’ve always been passionate about holistic health but this year I’ve been seeing a lot of the benefits from the decisions I made in 2017 and am continuing on this path of wellness.
Thank you so much for continuing to read my story! Next Wednesday I will be posting part 6 which will be one of the final parts of my story. Subscribe to my blog if you want to be notified of when it’s up!