Time out for real life

I can’t say for sure because I’m only on the first sentence here, but this post probably won’t give off as much optimism and determination as a lot of other things I’ve written. Fair warning: I have an appointment hangover today, which means I’m over-tired and feeling all over unwell and quite frankly I just don’t feel like being very positive. But that’s okay, because that’s real life.

So remember last week when I said that my one word for January was “trust”? Remember I said that I was going to put my trust in the medical system, long waits and all, because it had yet to let me down?

Yeah well, I’m calling a time out.

I spent a lot of time yesterday evening grappling with the frustration and impatience that I’m feeling because it’s still January which means that I’m supposed to be focusing on letting go and trusting the system. The thing is, though, ignoring those feelings didn’t make them go away, it only added to my exasperation. I realized that I could feel guilty for being fed up when I’m supposed to be all calm and trusting, or I could just accept those feelings because they’re real.

So I’m calling a time out, now. A time out for real life.

I had my long-awaited appointment with medical genetics yesterday out at BC Children’s and Women’s Hospital and Health Care Centre. My mom and I spent an hour and a half with a geneticist, a genetic counsellor and a medical student. They were thorough, understanding and proactive; overall it was a very good appointment. I’m being evaluated for a genetic connective tissue disorder called Ehlers-Danlos Syndrome but before she decides to make or not make an official diagnosis, the geneticist needs some more information. As such, I’m being referred to a cardiologist for cardiovascular imaging and an autonomic specialist for autonomic nervous system testing.

Don’t get me wrong, these referrals are good! I’m happy about them, because it means that I’m one step closer to finally getting to the bottom of all my random yet rather disabling symptoms. But, of course, this involves more…say it with me now…

Waiting. Waiting, waiting, waiting. I feel like all I have done for the last two years is wait, wait and wait some more! And I just do not want to wait anymore!

They couldn’t tell me exactly how long it would take, but they estimated about six months until I would be able to see the specialists and get the tests done. And it’s very possible it will take even longer than that. Plus, once I get this testing done, then I will have to wait to get another appointment with the geneticist to go over everything. Maybe it will all happen a lot sooner than I expect, and maybe in six months we will be laughing at how unnecessarily melodramatic I was. If that’s the case, great, but like I told you I’m over-tired so all I’m really focusing on right now is that I have to keep waiting.

But Catherine, you might be thinking, six months is not that long! Especially since you only started pursuing this in December!

Except that’s not exactly the case. I started wondering about Ehlers-Danlos and autonomic dysfunction two years ago. I mentioned it to my family doctor, to my GI and to the motility specialist I saw in Calgary. It’s not that they didn’t take me seriously, it’s just that they kept telling me I was malnourished and needed to get my caloric intake up. How could I argue with that? I was malnourished! And I did need more calories…hence the NJ tube, and the J tube, and the TPN. But I also really felt that there was more to it than just inadequate nutrition. And it’s only now that, for the first time in years, I’m consistently getting adequate nutrition, that my doctors are realizing there’s more to it than just the gastroparesis.

Six months, when I’ve already been waiting for two years, is discouraging. I know that I’ve got a lot of lost time to make up for, and that undiagnosed issues aside things will continue to slowly improve with time. Even still, my life is largely on hold, and it has been for the last two years. And it will always be somewhat on hold until we know what is going on and how to better manage it. I do my best, and I promise I’m not miserable day in and day out, but I’m also not going to school, going to work, going out with friends or anything else like that to distract me.

I’m waiting. Waiting to find out when my appointments are. Waiting for the appointments to come around. Waiting for results. Waiting for answers.

I’m tired. And I’m frustrated. I’m hopeful, too, but today I’m mostly just tired. I don’t want to be patient anymore. So forget my one word for January today. Today I needed to call a time out and let myself feel defeated, because that’s real life.

What am I going to do about it? Nothing, because what can I do? I’m going to keep waiting, and not because I’m exceptionally resilient or incredibly tough, but just because I have to. Because this is my life. Because that’s real life.

Aaaaaaaaand BREAK! (That’s supposed to signal the end of the time out…and if that’s totally wrong please don’t hold it against me because I didn’t play sports. I was a dancer, what do I know?)

Chin up, guard down. I feel a little better now. And I am surrounded by good people and reasons to be grateful. That’s real life, too.

P.S. I’ve really upped my game on this whole Lady in Waiting thing, as evidenced in the photo below. That or a fellow spoonie is learning Photoshop. It’s one or the other, or perhaps it’s both!

Lady in waiting 2

And the word for January is…

At the end of December there was some talk on my Twitter feed (is that the right terminology?) about the concept of ditching a long list of New Year’s resolutions and instead picking one word to focus on for the year. For anyone who is on Twitter, you can search @getoneword or #oneword to read more.

I first heard about the whole one word thing last summer and I thought it was a great idea, picked the word balance, and then basically just forgot about it until a few weeks ago. In trying to decide what my one word for 2015 would be I concluded that picking one word for the entire year was not the best idea for me. On the roller coaster of chronic illness circumstances change so quickly and my priorities in a few months might be totally different than my priorities now. Instead, I decided to pick a word just one month at a time. That said, my one word for January is…

Trust.

Confession: Lately I have been feeling disillusioned and frustrated with Canadian health care. I have always been so proud of our universal health care system. When I was in grade eleven I actually did a presentation on our father of universal health care Tommy Douglas. But lately? Lately I have been unable to look past the overburdened and overcrowded system with its long wait times.

We’ve all been there. We’ve all waited months for things to get done, but here are a few examples. I was referred for a non-urgent brain MRI in June of 2013 and my appointment was for April or May of 2015 (and then I ended up having it done inpatient last year). When I needed to see my GI after three years the wait time was five months, and that was as a returning patient not even as a new one. I have an appointment with a geneticist later this month that I was referred for in July. I’ve always just accepted that this is the way it works here and not knowing anything different I never really thought much about it.

Until a few weeks ago.

You know how I’ve been talking about mystery symptoms that are awaiting diagnosis? Well, most of those symptoms are related to my autonomic nervous system and while all my doctors agree that there is something wrong with said system, it’s beyond their scope of practice and they don’t know what to do about it. As a result, in December I was referred to a neurologist and last week I was given my appointment date…for June.

That was it. If I was a camel that would have been the straw to send me to the ground. However seeing as I am a human being and not a camel I instead cried. I’m not up on the current wait times for various specialties here, but objectively speaking I’m not even sure if six months for something non-urgent or non-life threatening is that long. Subjectively speaking, though, six months feels like forever. How can I live in this body that is constantly betraying me for another six months?

Side note: I’m very happy to be a human and not a camel in this situation because on top of all my other health issues the last thing I really need right now is a broken back. Of course there are a lot of other reasons I am happy not to be a camel but those reasons really aren’t relevant here.

As I was saying, six months feels like forever. I know that there are people who are worse off than I am also waiting for months to see doctors. And I know that there are people getting in to see specialists sooner because their situations are urgent or life threatening. I know these things, but when you’ve been sick for years it’s really hard not to be selfish. It’s really hard not to think who cares about other patients? I just want to feel better! And remember how I said that long wait times were all I knew? Well now that I’m connected with a lot of other spoonies, most of who live in the States, long wait times are no longer all I know. I know that it’s possible to see a specialist within weeks. And I know that it’s possible to call a specialist on your own to make an appointment, instead of waiting months for them to call you with an appointment that’s still months away.

It’s hard not to be jealous. It’s hard not to be impatient. It’s hard not to feel like I’m trapped in a health care system that sometimes seems more like an impossibly long line-up.

But the thing is, this system also hasn’t let me down. I have endured some really long waits and have had some negative experiences, but I have always been given the care I need. My life has never been at risk because I’ve had to wait. No one likes waiting, but things have always been okay in the end. So why should I think that this is any different?

It’s not. Which is why my word for January is trust.

Trust the system. Trust my doctors. Trust that things will turn out for the best. Trust that something good will come from being patient.

I cannot change my situation, but I can accept it and trust that things will be okay.

So that’s my one word for January. Come February 1st I get to go back to my frustrated, disgruntled, and jealous ways! But in the meantime I will just let it go and trust that everything will work out.

And trust myself to get through it, because no matter the month or the word, that will always be true.

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!