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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Tomorrow will be better

I’ve been home for just about four weeks now and I haven’t written anything since my last night in the hospital. I wish I could tell you it’s because I’ve been busy living life and too distracted with all the comforts of home, but that’s not the case.

My first week home was a whirlwind. The day after I came home I developed incredible discomfort and pressure next to my feeding tube site accompanied by a bulge in my abdomen. After two nights of barely sleeping because of the discomfort and pain (and having a doctor tell me ‘worry can do that to us’) the balloon on my tube ended up popping (again…just two months after the last one). This of course meant that I had to go to interventional radiology to get it replaced. Five and a half weeks in the hospital…and three days after I’m home the tube breaks. After explaining all my symptoms to the radiologist, the going theory is that the balloon was causing a partial obstruction (‘worry can do that to us’…pft!). The new balloon is inflated to a smaller volume to hopefully prevent this from happening again.

In addition to the tube change, I also had to get my weekly TPN bloodwork, went to two doctors’ appointments, and had an appointment at the home health nursing clinic to have round one of my sutures removed. And then there was the whole getting used to doing TPN on my own at home thing. Like I said, it was a whirlwind.

And then I crashed. Now, I was expecting to crash when I came home. Pre-hospital I was so sick but trying so hard to avoid the hospital that I was basically just running on adrenaline. I’m not sure things really changed during my time in the hospital. Despite the fact that they are full of sick patients who need rest, hospitals are not super restful places. Between my crazy roommates, and my crazy roommates’ family members, moving locations four times, having doctors change the plan every other day, PICC placements, the tunneled central line placement and all the TPN training, it was busy and I came home exhausted!

So I was expecting a crash. I expected to barely move for a week or two while my body recovered and then I expected to slowly feel myself getting more energy and being able to do a little more, feel a little better. But that hasn’t happened. The opposite has happened. I’ve crashed harder and longer than I was anticipating. And I don’t feel myself getting stronger, I feel myself getting weaker. I’ve developed a whole host of random mystery symptoms that are keeping me down. It’s frustrating because everything that I’ve gone through recently has been for the purpose of improving my quality of life which hasn’t happened yet. And it’s a little scary because I’m supposed to be getting better and I’m not.

Maybe I picked up some sort of virus and that’s why I’ve been feeling so awful. Or maybe my body is just doing major damage control from my days of too few calories and it’s just going to take a while. Or maybe something else is going on. I guess only time will tell.

No matter how awful my day has been or how awful I might be feeling at the end of the day, every night I always say “tomorrow will be better.” On first glance, every day lately I am wrong and my ‘tomorrow’ is not better. On second glance, though, something about the ‘tomorrow’ is always a little bit better than the yesterday. I had a better sleep, I was able to wash my hair, I got a funny email from my Grandma, I got a new scented candle, old neighbours surprised me with flowers. Tomorrow as a whole is not always better, but there are good things happening every day to keep me going.

And then I was thinking about how every day millions of people in the world are having a bad day, and how those millions of people are all wishing for a better tomorrow. Maybe my tomorrow isn’t better, but I bet it is for some of those millions who were also having a bad day, maybe people who need it even more than I do. And the next tomorrow is better for a few other people. And one day it will be my turn.

I am a Lady in Waiting, after all. And good things come to those who wait – I have to believe this is true.

Tomorrow will be better.

One day, I will be right!

For worse and for better

Hello from the hospital.

Maybe you’re surprised to hear that I am here, but honestly it’s been a long time coming. To summarize a few months into a few lines, I am here because symptoms have been getting worse and so I’ve been eating and feeding less. I’ve lost most of the weight that I put on after getting my feeding tube. It got to the point that I wasn’t taking in enough to sustain myself and unfortunately everything I was taking in made me feel so sick that the little energy I did have was spent fighting a constant battle against nausea, which, let me tell you, is exhausting.

When my GI first mentioned the hospital five or six weeks ago I said no that’s not going to happen and I resigned myself to keep trying. And I did. I tried with everything I had. Something you might not realize about chronic illness is that it is accompanied by a ton of self-doubt.

Am I really fighting hard enough?

Have I really tried everything?

Perhaps I should just suck it up…I don’t feel that terrible, do I?

Even though it was pretty obvious weeks ago that a hospitalization was in my future, I wasn’t ready to surrender. I had to know that I had really given it my all and that if I ended up in the hospital it was because I really had no choice. Eventually things just got so bad that by the time last weekend rolled around I was just counting down the days until Monday when I could email my GI’s nurse to give them an honest update about my health, nutrition status and overall quality of life. The response? See you in the ER tomorrow.

So on Tuesday I spent 13 hours in the ER and at 10:30 that night I was finally moved upstairs to a medical ward. And that’s where I’m writing this from right now.

The purpose of my stay? Wednesday morning I had a PICC line placed and since then have been receiving 24 hour TPN along with really low rate tube feeds during the day just to keep my digestive system working a little bit. And in non-medical speak…a PICC line is a central line IV, which means that instead of sitting in a vein in my wrist or lower arm like most IVs you probably see, this line starts in my upper arm and is threaded up through my veins and into my superior vena cava, or the major vein that drains all the blood from the arms and upper body into the heart. TPN is total parenteral nutrition, or IV nutrition, so basically it delivers everything I need (carbs, proteins, fats, vitamins, minerals) right into my bloodstream in order to bypass my digestive tract. TPN cannot be run through a peripheral IV hence the PICC line.

I wish I could tell you what the plan is and how long I’m going to be here, but the thing is we just don’t know. It’s basically a wait and see situation. My body has been starving for so long that it’s not clear whether or not a short burst of TPN is going to be enough to snap it back into action, or if the TPN is going to have to be a slightly more long term kind of thing.

In the meantime, though, I’m stuck in the hospital and I’m stuck on this medical ward. To be perfectly honest with you, this is the hardest hospital stay I have had so far. I was spoiled by the efficiency and incredible staff in other wards and I am finding being here frustrating and exhausting. Half of the rooms, including mine, have contact precaution patients in them. And some of the sounds are so unsettling that I find myself just putting my hands over my ears and wanting to be anywhere but here. Every day I am asking myself why did I do this to myself? Why did I raise my white flag and admit how poorly I was doing? Why didn’t I keep fighting this myself in the hopes that things would turn around?

Because sometimes you can’t make it on your own. Sometimes things are bigger than you. Sometimes you need to make yourself vulnerable. Sometimes you need to ask for help and then let people help you, even if it’s scary and even if it’s hard. That’s why. And sometimes things have to get worse before they can get better. But we can’t let the fear, or the reality, of things getting worse keep us from hanging in until things can get better.

All I want to do is leave this place but all that would do is put me right back where I started. I have to hang in here because this struggle can’t be for nothing.

I really do think the hard work is worth it in the end. We have to experience the ‘worse’ if we want to make it to the ‘better.’

Don’t believe me? Well I’m going to show you. I can’t tell you exactly how long it’s going to take, but I’m going to tough this out and my future is going to be better because of it.

This is my life, for worse and for better. And every day I’m just going to keep looking forward to the better.

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P.S. I just really feel the need to clarify that no, that is not a bag of pee! TPN is just bright yellow from the vitamins.