One with the trees

Here we are in a new year and so it’s time for a new One Word!

Last year I started by just picking my one word for one month at a time. Everything about my life felt very up in the air last January so I wasn’t ready to think ahead further than that. As it turned out, though, a few months into the year the word advocate came forward as my focus. While the word advocate can be applied in many different settings, I meant it in a health-centered way. And it worked out well for me! I made a lot of really important health-centered steps forward last year. I got a POTS diagnosis. I finally got my EDS diagnosis. I got a new family doctor. Those were the big ones, but there were a lot of small successes throughout the year, too.

I will never stop needing to be an advocate for myself. That said, I don’t need it to be my only focus right now. This year, I am going to be one with trees. Yup, that’s right, I’m dying my hair green and wearing a tree shaped car air freshener around my neck.

Not quite. I am going to be one with trees though, because my one word for 2016 is Branch.

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And now I am going to make my high school English teachers proud (Hi Miss Triveri!) by walking you through an extended metaphor.

When I got sick I was uprooted. I had been on steady ground, I had been thriving, and then it was as if someone pulled me out of the life I knew and tossed me aside. It didn’t matter how hard I had worked, how many connections I had made or how many goals I had set for myself, all of a sudden I found myself on unfamiliar and unfriendly terrain. I couldn’t thrive there. I lost all of my leaves, on the outside but on the inside, too.

I spent the next couple of years desperately attempting to find my way back to where I had been. I didn’t spend much time trying to figure out this new ground beneath me because why bother putting down roots when I was determined not to be there very long? My eyes remained on my old turf. I enviously watched all those other trees continue to thrive while I, from a distance, continued to shrivel away.

But then something changed. I took a look around me and realized that maybe I could find a way to grow right where I was. In a lot of ways this new terrain was less welcoming, but in some ways it was more forgiving. It wasn’t strictly better or worse, it was just different. It took a lot of hard work, but I was able to establish some roots. That’s what I was doing all last year while advocating for myself, I was putting down roots.

And now? Now I’m ready to branch. Now I’m ready to see how see how far I can reach right from where I am. I don’t know exactly what this will look like yet but I do know that I will be able to weave it into a lot of different areas of my life.

In terms of my health, my diagnoses are my roots. Now that I know what I’m dealing and now that the big things are being treated and managed, my new doctor and I can start to take a look at the little things, the better quality of life things. Now that I have a better understanding of what my limitations are, I’m learning how to be mindful of them instead of doing more harm than good by ignoring them. I’m working with my physiotherapist to improve my strength and stamina in a way that protects my zebra joints.

I also have roots in this blog. I started putting my words out there a little more last year which gave me the chance to connect and form friendships with a lot of really awesome people. I hope to branch out even more in my writing this year.

And perhaps one of the hardest things for me will be to branch out when things are not going well and reach out to other people when I need help. I have roots in the form of incredible people in my life, family and friends who never stop letting me know I am loved, but I tend to hide away when things are tough and wait until I feel in control again before letting them in. I’m going to try to let them see me and support me even when I’m losing leaves.IMG_0971

I’m going to be one with the trees. I’m ready now to figure out how to thrive within this new terrain, not against it. There will still be times when I lose my leaves faster than I can grow new ones and there will still be times when I feel left behind by all the other trees, but I hope to surprise myself by how much I am able to grow.

I’m going to make like a tree and leave now. You’re probably groaning, I’m sorry, but what can I say I’m a sap when it comes to puns. Don’t worry though, I can’t think of any more. I guess I’m stumped.

Okay. NOW I’m done.

The mystery of the missing hair

So my hair is falling out. And after weeks of feeling insulted that my hair just didn’t want to hang out on my head anymore I think I’ve solved the mystery.

It started about a month ago when I thought there was a dead rodent in my shower before I realized that the small animal was not an animal at all but a mass of hair that had once been on my head. I figured that I must have just forgotten to brush my hair for a few days, but then I noticed that my brush was unusually full of hair, too. And then the small animals in the shower grew in size, I started having to clean my brush every day and all my clothes were covered in hair. I can’t run my fingers through my hair without losing at least 15 to 20 more strands.

Oh and the most annoying part? All this fallen hair gets tangled up with my yarn and then crocheted into whatever I’m working on so I’m constantly ripping out stitches. I don’t have random bald patches on my head or anything; it’s orderly and evenly-distributed hair loss and I do appreciate it taking that courtesy. Plus I had a surplus of hair to begin with…


So even though my ponytail is about half as thick as it was a mere month ago…

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There is a decent amount left. But still, it’s a rather concerning problem. I was lightheartedly considering the fact that maybe my winter coat was just coming in, you know like dogs and horses, while seriously considering making an appointment with my doctor and getting ready for a long process of trial and error trying to figure out which medication was causing the hair loss.

And in the meantime, I was troubleshooting the problem with a friend. No malnourishment. Iron is going up and anemia is improving. Thyroid was checked last month. A couple of new meds in the last few weeks but nothing around the time that this started. Mystery! My friend then suggested that it could be somehow related to when I was really sick a few months ago or just a cumulative effect of the stress of being more unwell than usual the last few months.

Now before I get to my point I’m going to take you off the edge of your seats and solve the mystery for you…or at least my theory about why this is happening. I did some googling on the structure and life cycle of hair (and learned some very fun ‘fun facts’ that I won’t bore you with now but will save for the next time we’re at a party together and the conversation needs a little pick-me-up) and at any given time about 5 to 15% of the hairs on your scalp are in ‘telogen’ or resting phase, and then about one to two months later when the resting phase is over and a new hair starts to grow in its place the hair falls out. I also learned that big physical and mental stressors, such as surgery or death of a loved one, can cause a large percentage of hair to enter telogen prematurely. And then I learned that one of these so-called physical stressors is high fever!

Ah ha! Two months ago I had a high fever for several days with almost no relief, and then once it came down I continued to spike temps on and off for another few days. So my theory (my speculative, I-read-about-this-on-the-internet theory) is that the fever I had two months ago is why all my hair is falling out now. Apparently you can lose up to 70% of your hair this way! Luckily, though, it should fully recover within a year.

Fascinating stuff, right?

Alright, so now time to get to my point.

Let’s backtrack to when I was troubleshooting with my friend. Do you know what I thought when they suggested it could have something to do with my mystery illness from a few months back? I thought oh but I was only in the hospital for 10 days! Only…because 10 days this fall is nothing compared to the 37 days last fall so I had somewhat disregarded it.

And do you know what I thought when they pointed out that I’ve been more unwell than usual lately? I thought nu-uh that’s not true, is it? At the exact moment of that conversation I felt okay so I had to stop and think about it before realizing that oh yeah…my health took a dip over the summer and hasn’t managed to fully bounce back yet.

It’s hard to notice regression when you’re in the middle of it. I had a bad week, and then another, and then another, and now I’m looking back four, five months and realizing that I’m not doing as well now as I was then. When every day you just feel blah, all the days kind of blur together and blah stops being blah and instead becomes the norm.

But the opposite is also true! It’s hard to notice progress when you’re in the middle of it. And it’s easy to become less conscious and appreciative of the good things when you’re surrounded by them. I forget how awesome my family and friends are until I hear stories from people without a support system.  I don’t always realize how great my doctors are until I come across one I don’t like.

It works both ways. So I’m going to try and be a little more mindful, acknowledging the toll that the bad stuff takes and recognizing that the good stuff is good even before the bad stuff comes along and points it out to me.

And in addition to being more mindful I’m also going to get my hair cut. Small animals in the shower shall be extinct!


The not worst year of my life

It’s the end of the year, which means that I’ve been doing the same thing as a lot of other people: reflecting on the last year and thinking forward to the year ahead. Since I have a blog now, and that basically means I publicly post my thoughts and reflections, I’m going to tell you what’s going through my mind these days.

A year ago, at the end of 2013, I felt pretty defeated. 2013 was not an easy year for me. I started the year by taking some time off of school to get my health back on track. I naively thought that after a month of taking it easy I would be back to normal…and by normal I mean managing my gastroparesis with medication and diet while maintaining my weight, going to school, working and volunteering. Unfortunately, it didn’t work out like that and I actually spent 2013 getting sicker and sicker. I was unable to go back to school, I withdrew from dance classes, my relationship ended, and I ended up having to give up my job teaching dance. All because I was sick. I spent the month of October with a feeding tube up my nose and down my throat, followed by two months of desperately struggling to eat enough to avoid another feeding tube. I felt like I had lost what made Like I said, by the end of the year I was feeling defeated and I was ready to put the year behind me and move on.

To add to that defeat, my desperate struggles to avoid another feeding tube hadn’t worked and the decision was made at the end of 2013 that I would have a feeding tube surgically placed in the new year. My nightmare of a year had ended, but the nightmare hadn’t. I was so hopeful that the feeding tube was going to be ‘the fix’ and turn things around for me! I was going to get back to school! Maybe by next Christmas I would have improved so much that I wouldn’t even have the feeding tube anymore! 2014 was going to be a happier and healthier year.

So here I am now, at the end of 2014, reflecting back on the most challenging year of my life and not quite comprehending everything that has happened. Quick recap in no particular order: surgery, feeding tube, pain, granulation tissue, nausea, doubtful doctors, more nausea, burst balloons, weakness, exhaustion, hospitalizations, ER visits, TPN, appointment after appointment, missing Thanksgiving, missing Christmas, medication trials, X-rays up the wazoo, endless blood tests, sleepless nights and watching everyone else move on with their lives while I’m stuck in bed. And I’m not heading into 2015 healthy. I’m dealing with a lot of new and debilitating symptoms and waiting for several appointments with specialists who can hopefully get to the bottom of said symptoms. It was not the healthier year I hoped for.

At least not physically.

But isn’t health about so much more than just the body we live in?

A year ago I felt defeated, discouraged and lost. I felt like I had no identity and all I could focus on were the things I couldn’t do anymore…work, go to school, live on my own, etc. I was scared, dreading getting a tube and everything that it would entail. I was hopeful that 2014 would be a better year, but my hope was rooted in desperation; I needed it to be a better year because I didn’t think I could handle anything else.

One year later, I may be physically sicker but I am also happier. My identity is no longer defined by the things I can or cannot do; it’s defined by who I am as a person. 2014 was incredibly challenging but those challenges were what made this year one of personal growth and that growth is what helped me rediscover who I am. There are even more things this year that I am unable to do, and while that still gets me down when I think about it, I spend more time focusing on the things that I can do. I cannot go to school but I am still learning new things every day and using that knowledge to advocate for a better future for myself. I cannot make spontaneous plans with friends and do too many things in the real world with them, but I can connect with people all over the world facing similar struggles. I cannot enjoy food without consequences or eat enough to sustain myself, but I can safely care for my central line and handle all my TPN on my own, allowing me to enjoy the comfort of my own home.

I am hopeful, once again, that 2015 will be a better year, but my hope now comes from a place of peace. I know it will be a better year, because I know that ‘better’ is not just determined by my physical health. All of my struggles this past year have made me a better person, just as all of my struggles in the new year will do the same. All of my struggles this past year have allowed me to connect with some truly wonderful people, and next year I’m sure I will meet even more. Of course I hope for improved physical health, but I know I will be able to face whatever comes my way. It won’t always be easy, and I won’t always have it all together, but I will be okay. 2014 taught me that.

So maybe my body isn’t healthier, but my spirit is.

I’m going to take some advice from my new calender and let go. At least I’m going to try. I’m going to try and let go of the doubt, the fear, the pain, the isolation, the frustration, and all of the other baggage from the last year (except of course for my feeding tube and TPN backpacks…that literal baggage is coming with me!). There’s no need to lug all that around.

Besides, I need to make room for everything I am going to carry with me: the joy, the hope, the humour, the courage, the determination, the patience, the understanding, the strength and everything else 2014 gifted me with. All of that I’ll keep, because all of that will make the baggage 2015 is sure to bring a little easier to handle.

This was the hardest and most challenging year of my life. But it wasn’t the worst.

And next year? Next year will be better.

Wishing you all a new year full of whatever you need it to bring!

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