Quick Update : I’m still here.

Last Sunday I woke up with intense pain in my right rotator-cuff and it still hasn’t settled yet. It could just be some sort of a nerve pain because it seems to be running right down my arm and into my elbow and wrist, affecting everything that I do again.  I’m still waiting for it to subside a little bit at least before I’m able to get back to doing other things! Seeing its present condition, I’m assuming it will take about a week or two to feel any better – that’s okay, that’s just how it is and we know this by now.

I’m expecting the next couple of weeks to be fun and tiring at the same time.  My brother’s visiting for a break so I’m looking forward to some sibling time with him. There are a few other things lined up as well, and I’ll have to make sure I get all the rest that I need even through all this. I tend to get over-excited sometimes and forget what’s good for me. I don’t have a clear plan as to how I’m going to manage it all, though I intend to have a better balance between rest time and all the upcoming stuff!

Everything’s been pretty alright at my end otherwise; there are still a few of things to work through and that’s just a process – not some sort of an end destination.

That’s all for the moment.

Wish you all a great week!

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East Coast – Not sure when I last posted a photo of the shore. It is a tiring walk till this point of the beach, though, there are times I can handle it! Today was one of those times and I feel great. #thursday #morning #walk #beach #shore #mytapestory

Not POTS.

❤️ So my reports were pretty normal. It’s not POTS and I’m really happy about that.

❤️ I need to track my symptoms and see if I find a pattern to the sudden spike or drop in my heart rate at times

❤️ I might then go in for a ’tilt-table’ test, which is a diagnostic test to see if I show a tendency of having vasovagal response

That’s all for today.

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Cardio Visit (2) – Echocardiography

So I reached the Cardiologist’s clinic and within about ten minutes, the holter was off my chest! I felt relieved, almost. It’s not like it added extra physical weight onto my body, but mentally I was tired. I had spent the last 24 hours with wires and plugs all over my body, a little monitor hanging off my neck to track my heart rate… I think I’d be lying if I said I didn’t feel a little heavy-hearted.

After the holter was removed, I made my way to a hospital nearby for Echocardiography. I had read up on it way in advance so I was aware of what the test would be like, though I didn’t know what I’d feel during the test. I got myself a bar of chocolate – I think I deserved it. We all deserve a bar of chocolate whenever we want.

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It was only when I was at the cashier paying for my chocolate bar that I saw what the referral form read – “Clinical Findings: ? Postural Orthostatic Tachycardia Syndrome” (https://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome). I suddenly felt a little uneasy. I knew exactly why I was going through these tests and plus I had researched enough about POTS to know that it would be another tricky condition to deal with. This was one of the things I was hoping to rule out – POTS, yet another RARE condition commonly associated with EDS and HMS – no please! I literally felt as if my heart paused for a moment, as if my life came to a little halt, to remind me where I was. This was real. I felt uneasy… but deep down underneath that  layer of uneasiness, I sensed courage. I was prepared to know more.

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So in short, an Echocardiogram is an ultra-sound test for the heart. It uses sound waves to produce images of your heart to help doctors see how your heart beats and pumps blood. These images can be used to spot abnormalities in your heart valves, muscles and other structures. (http://www.nlm.nih.gov/medlineplus/ency/article/003869.htm)

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I waited outside the Echocardiography Room for about 30 minutes, flipping through a brochure on how the test is performed etc. and munching on my chocolate bar…… over so many years of going through all kinds of tests and procedures, I’ve just learnt to be more patient. By then, the thought of seeing my own heart, hearing it beat and pump blood, was beginning to get a little exciting. I always wondered what it looked like inside – this part of us, this organ which we associate with feelings and what not. Sure, I’ve used a mobile application to check my bpm and in fact I do that all the time, but in no ways is that comparable to being in a hospital to have your heart tested.

There were no preparations required for the test. All I had to do was to change into a loose gown and lie on the bed next to the huge, futuristic looking ultra-sound machine. I’ve always been amazed at how medical technology has advanced over the years – what would life be like without these innovations?

Anyway, as expected, I was told to lie on my left side. Lying on the left side with all my weight over my left shoulder gets extremely painful for me, especially since the operation back in 2011. Unfortunately, there was no one other way (I checked with the Sonographer) for this test to be performed so I was stuck in an awkward, tensed position pretty much throughout the entire procedure. Once again, I had a couple of wires and plugs attached to my chest to monitor my heart rate and I didn’t have to do a thing except continue to hold myself in that position. That added to the uneasiness for sure.

Throughout those 30-40 minutes , I had all kinds of thoughts that I needed to sort out – some were just totally random  (who came up with the symbol ❤️ to represent this beautiful organ?) while some really made me think about life a bit more. I thought about the possibility of being diagnosed with POTS, but I was happy to see myself able to deal with the thoughts better. 

At times, I could just look back at the screen and get a quick glimpse of my pumping heart but for most time, I stared at an empty white wall in front of me and thought.

I can say this now. It’s hard – each time you have to go through a new test which could potentially lead you to something you want to know and don’t want to know at the same time – it’s hard. I think this is the case with most of us, no matter what age we are at, or what we’re facing, it’s hard to make sense out of the uncertainty that comes along with just not knowing enough.

One thing that has changed over the years though is how I deal with uncertainty before and during a test. Maybe I’ve dealt with enough uncertainty to be sane enough through more that may come, I don’t know. The thing is, the more I think about the uncertainty and the potential outcome of the test report, the more uncertain I feel about the present. And this turns into sick vicious cycle, which makes things worse, that too at a point when I should be trying to relax! So these days I try breathe more, and stay as present as possible. I remind  myself  that it’s okay to not know for now, and that I can’t possibly change the outcome(at least not right there and then), it is going to be what it is going to be. All I can do during such times is to remain present and intend for the best possible outcome. Really, in that very moment, that is all I have a control over. Nothing else. I tell myself that once I know what it is, I’ll have control over how I deal with it AND no matter what it turns out to be, I’ll find a way.

“I am right here, in the Echocardiography Room, at the age of twenty-four and a half, with a rare disease, getting checked for yet another rare condition. It’s okay.  My heart rate acts a little abnormal sometimes and this experience is very real. I may or may not have POTS but I’m here right now, in the Echocardiography Room, to find out what comes next. Things have turned out to be quite different from how I thought they’d once be and I’ve come to terms with that. Am I ready to know more? This is the right thing to do. It’s always good to know. Almost two and a half years after the diagnosis, I am here today, in the same hospital, getting to know my body better. I’m here to learn more about my health so I can manage it better. I am not afraid, I’m not scared. I don’t sense fear in me like I did more than two years back. I am anxious about the result for sure but I know I’ll figure this out. I’ll learn new ways of looking after myself. I’ll do what I need to, I always have.”

I felt a sense of calm settle inside of me as I got myself to think about all that I value in life, even today, whatever condition I may be in. I needed to talk myself through this, one thing at a time – What is it that I am grateful for? What is it that still makes me smile? Who do I still have around me? What do I still have around for me? I surely didn’t want to get overly emotional out there during a test, though I don’t think it is entirely up to us to decide if we want to or don’t want to think about something while getting our heart checked. I continued having a little internal conversation with myself while the Sonographer clicked more images of my heart.

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Soon, I wasn’t thinking about POTS as much. I was thinking about the good things in life instead. The places I like to visit…. the people around me… the medical support that I have… the fact that I am capable of dealing with so much…how I’ve learned to manage so many different things all at once…

Sometime towards the end of the test, the Sonographer recorded an audio of my beating heart and I must say, hearing that made a subtle impact on me. It was a feeling I can’t quite describe – it was just my heart beating…it was my heart doing its job… something so crucial to my existence.

“THIS is called being alive. I thought I knew what it felt like to be alive. I thought what did every day is called being alive. When you see your own heart beat, sometimes faster than normal or slower than expected, you realize that this is it – It’s doing its best right now. This is what is keeping you alive.”

I took one long and deep breath, smiled to myself and closed my eyes through the rest of the test.

I’ve got to go back to see the Cardiologist sometime later next week and that’s when I’ll find out more. I might even have to go for a couple more tests if required, though I don’t know much about those yet. I’m just going to take this one step at a time. Honestly speaking, even now, I’m not afraid to find out what the report says. So until then, I’ll be happy knowing that I have a heart and it is doing what it needs to. It is pumping blood throughout my body via my circulatory system, supplying oxygen and nutrients to all my tissues and removing carbon dioxide and other wastes.

❤︎

Morning With A Holter 

I hate the idea of not being able to shower first thing in the morning. I might sound like a little baby making a big deal out of something so small but really, a shower first thing after getting out of bed….means a lot to me.

1. It marks the start of my daily routine and I feel a little disoriented if I don’t begin my day with a nice shower. Mentally, I’m a zombie till I shower.

2. It helps with muscle tightness and soreness that I experience pretty much every morning. I can’t say it takes away  all the aches but it surely makes me feel at least about 10-15 percent better if I start my day with a warm shower to relax the muscles.

I’ve got about a total of 6 hours to go before I’m able to shower.The holter will be off in just a couple of hours but I may have another test after that…

I was specifically told  ” try not to sweat too much” (and make sure that the equipment doesn’t come into contact with water) while the holter is on me and that’s a bit hard when it’s so freaking hot outside. Sweat can cause the adhesive plugs to fall off and it can also get disgustingly itchy. I didn’t bother walking yesterday or today either.  I’m sitting in my room with the AC on and a fan blasting on my face as I type this out. Oh yes, I cancelled my physiotherapy session for today as well and I don’t think I’m walking till tomorrow.

Have I ever mentioned what it is like to miss a physiotherapy session?

It’s baddddd. I mean, I know how to tend to the pain I feel in general but I can’t quite reach all the spots or work on all of them myself. No, I don’t have that much strength in me. Plus, I’m hypermobile enough, so I don’t like the idea of stretching myself into awkward positions either.

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Cardio Visit (1) – Holter Monitor

I haven’t quite written here in a while now and I don’t plan to write too much today either. I’m feeling too exhausted from yet another long appointment. Besides, I  also have a holter hanging off my body today.

A holter is a small portable device that is used to  continuously monitor the cardiovascular system for 24-48 hours. My visit to a Cardiologist was sort of due as my heart rate had been acting a little abnormal for sometime now, and it took me a very long time to realize that this was yet another symptom associated with HMS/EDS.

From what I know, things can get a lot more complicated if you’re diagnosed with the other types of EDS (all the other five types excluding type three) but my Neurologist thought it was a good idea to get it all checked anyway considering my long-ish medical history. Makes sense, I felt this was needed too. These are conditions that can potentially get very complicated and can turn into something risky, we all know that. And I’ve learned it’s always better to be safe than sorry so I’m glad we’re finally doing this. I might also need to go for a few other tests over next week just to make sure everything is normal.

The nurse commented that I should’ve worn something “more loose” since all the plugs and wire would show from my tight-fitting tank top and that’s “not nice” but “that’s ok”. Well, who knew I was going to have that many plugs and wires hanging off my body! Now I know better – whether you look like you walked out of the operation theatre during a heart surgery is not the point really. The point is that this can get a little uncomfortable, with wires and a portable monitor dangling off you and adhesive plugs attached to your chest, so one would rather be in a loose-flowy top (or pyjamas?) than a tank top, right?

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This is probably the first time I’m posting one of my handmade motifs on Instagram – I don’t usually do this but I felt really inspired to share one of my artworks after seeing a few people share their creations lately. Patterns have some sort of a therapeutic effect on me ✨Each time I hold a marker and start creating, I enter a different world altogether – a world where I’m just with myself – except there is no conversation happening, nothing at all. Thoughts and emotions come up and they just simply pass by. They just pass through my mind. They don’t disturb me, they just say hello and leave. Time does fly while you’re in a space with yourself, doing what comes to you naturally. Sometimes it’s a good option over journaling. #handmade #motifs #patterns #artwork #design #mytapestory
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