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…

IMG_8292 (1)

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!


Mixed signals

Well thank goodness January is over because I’m so ready to be done with trusting the system. I’m ready to be a disgruntled and impatient patient again.

Moving on. It’s time to pick my word for February.

Let me start with a story.

You know the game Trivia Crack? Well if you don’t, it’s basically Trivial Pursuit in the form of a smartphone app that you play against your friends. Some of the questions are really easy (What colours make up the Canadian flag?) and some of them are trickier so that all I can do is blindly guess. A couple of days ago I had the question “How many years did the Thirty Years’ War last?” and I got it wrong. I picked 33. I would love to tell you that it was just an episode of clumsy thumbs but that would be a lie. My instincts told me the answer was 30, but then I intentionally picked 33 because I figured that the game was trying to trick me.

And now it’s time for a history lesson. The Thirty Years’ War did in fact last for 30 years. Shocking, I know. You can pick your jaws up off the floor now.

I think we’re all familiar with the phrase “trust your gut.” I’ve been hearing it my whole life and for the most part following that advice has served me well. Literally speaking I cannot trust my gut with anything because my gut is somewhat useless, but my “gut feeling” or my instincts are usually right, especially when it comes to my health. Here’s the thing, though. Somewhere along the way in the last year those instincts got lost in a sea of mixed signals and I stopped trusting them.

About a year ago I had my first post-surgery follow-up appointment with my surgeon where he basically said forget my extensive medical history, forget my previous tests, he didn’t think there was any reason for me to be sick. Instead he concluded that I had a narcotic addiction and an eating disorder. Cue major inner turmoil and self-doubt! Everything ended up being straightened out but since then I have been wary of new doctors and worse, wary of my own instincts.

Last November when I was having issues around my feeding tube I went to see the family doctor on call. I explained the symptoms and the pain to her and I showed her the giant bulge in my abdomen. I told her I couldn’t sleep because I was in so much discomfort and she told me that worry can do that to us and sent me home. Later that day the balloon burst and the radiologist who replaced it told me that actually it had likely been causing an intestinal obstruction. Just worry? Obstruction? Confused patient.

In December I had another episode of really bad abdominal and lower chest pain but unrelated to my feeding tube. I felt like something was blocked or obstructed. With the advice of a GI to go to an ER if it got worse, I ended up at the ER where they listened to my symptoms, did a pelvic exam and sent me on my way. After talking to my doctors about this, consensus is that I was experiencing a loss of function in part of my intestine which would, as I had felt, result in a temporary blockage. Thanks for the pelvic exam, buddy, but perhaps next time it might be worth it to listen to my gut with a stethoscope? Sure, everything resolved on its own in time, but it would have been nice to go home not feeling like a crazy person.

And then this last week happened. Over the weekend I started having a lot of pain and discomfort around my tube. It didn’t feel like it normally does before the balloon bursts, but it definitely didn’t feel right. Kept me up Sunday night. Bothered me all day Monday. I even saw my GI on Monday but I completely brushed it off because I figured it was nothing. I completely ignored my instincts that something was wrong with my tube. Turns out that the balloon had migrated into my tract (think Santa stuck in the chimney, only my abdominal muscles are the chimney) and on Wednesday my sister took me to interventional radiology to have the tube replaced. I spent more days in pain, unable to stand up straight, than necessary just because I didn’t trust my gut that something was wrong.

I wish those stories were the only ones I have, but they’re not. There have been countless times where my instincts about my health were right, yet brushed off by doctors. Sometimes it takes only minutes for them to come around, and sometimes it takes years. As a result, there have been countless times where my instincts about my health were right, yet brushed off by me out of fear of being a hypochondriac.

So is the blame on the doctors? No. Not at all. They were doing their jobs in the best way they knew how at the time. Just as I have to do my job the best that I can. My job as a patient. My job as my advocate. Sure, there have been a lot of mixed signals, but allowing those signals to affect my trust in myself? That’s on me. Nobody forced me to doubt myself; I let that happen. I let my hypothetical gut follow the corrupt path of my literal gut!

Which brings me to my word for February: trust.

Again? Yes, again! Except this time I’m trusting myself. Trusting my instincts. I’m so weary of having to fight for my health and fight for answers, but for the month of February I won’t let myself give up. I’m going to trust in my ability to advocate for myself, and trust that it will, one day, pay off.

Trust myself to know myself? Seems doable.

And you’ll definitely hear about it if it’s not!

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!

Words of wisdom (2)