My actual adventure with acupuncture

Just about a year ago I had an almost adventure with acupuncture. I say ‘almost’ since the practitioner refused to actually give me treatment because of my feeding tube. I always intended to find another practitioner and try it again, but then I got too sick to put time or energy into anything other than survival and it just never happened.

In an effort to get rid of this stubborn headache that’s been hanging around since December I decided it was time to try acupuncture again. I was recommended to a clinic that ended up being less than five minutes from my house. Hoping to avoid a repeat experience, I laid everything out beforehand…my medical history, my feeding tube, my central line…and after talking with one of the naturopaths over the phone I had a really good feeling about it. He said that I definitely need western medicine in my life, but that he thought he would be able to help with the headaches and just my overall energy level and quality of life. And there was no expectation that just because we spoke on the phone I had to make an appointment.

Awesome! Sign me up.

So last Wednesday I went for acupuncture round one. After three hours at the hospital on Monday for an iron infusion, and just an all around bad day on Tuesday, my week was not off to a great start but I was feeling really positive about this appointment. Perhaps it would be just what I needed!

Long story short: it was really bad.

And now for the long story…

The naturopath himself was great; he was very knowledgeable and kind. He did his traditional Chinese medicine evaluation thing, no problem. Then he put the needles in, no problem. Then he dimmed the lights, put on the nature sounds music thing and left the room so I could just relax, telling me he would be back in about 15 minutes. No problem.

Oh wait, problem.

A few minutes after he left I started to feel kind of weird. And then the weird got worse and I started to feel just plain old awful. I was nauseous and despite the fact that I didn’t feel anxious, my heart was racing and pounding my chest. It was as if someone had injected me with epinephrine (a feeling I am familiar with because it has happened before). I just kept breathing deeply, listening to the nature sounds and trying to ignore how sick I felt. I wanted to curl up on my side but seeing as there were needles in the side of my head I figured that would be a bad idea. I tried closing my eyes but that just made the dizziness worse. All I kept thinking was that 15 minutes must have gone by, it must be almost over, he must be coming back any moment now.

Side note: There was a needle right in between my eyes that I could clearly see and in between the feeling sick and feeling even more sick, I kept thinking of this YouTube video that you should watch because it’s funny.

Finally he came back in and he was quite concerned by how awful I was feeling. Beforehand he had warned me that a lot of people experience significant blood pressure drops following treatment, but my blood pressure afterwards was really elevated compared to my normal. I was so happy to get out of there, but when I got back to my car I still felt so sick so I had to wait a while before I could actually drive myself home.

Yikes. That did not exactly go as well as I had hoped! And for the next four days I felt particularly symptomatic. I can’t say for sure that the acupuncture made me feel worse, but it definitely didn’t make me feel better!

So then I had to decide whether or not to go back this week for round two. On the one hand, I feel like I should give everything at least two strikes, if not three, before I rule it out. In chronic illness the two or three strikes rule is pretty common. Our bodies are so inconsistent and hard to understand even when we aren’t changing things up, so a few tries is usually necessary to untangle what’s causing what. But on the other hand, I had a really bad experience and I don’t particularly want to put myself through that again.

I hummed and hawed over this for a few days and then I remembered that my word for February is trust. Trust my gut.

The irony here is that just last week I actually had the thought “Hm. Perhaps my February word is all for naught. I don’t think I’m going to be in a situation where I need to apply it.”

Anyway, I decided to trust my gut and cancel my acupuncture appointment for this week. Maybe it would be better this week, or maybe it would be worse. I will never know, but my gut is telling me that acupuncture is not the answer for me right now and I’m going to listen. This is not to say that I won’t ever try it again, but I think my health right now is a little too unstable and I need to wait until I’ve seen the right doctors who can help me get things under control before I give it another go.

So there you have it. My actual adventure with acupuncture. It was not a positive experience but hey, at least I tried it. Plus, I got a chance to put my February word to good use.

Silver linings.

Moral of the story? Trying new things doesn’t always work out well, but I still say it’s worth a shot because sometimes it works out better than expected, instead.

And hopefully my next post about acupuncture won’t be about an ‘almost’ or an ‘actual’ adventure, but an amazing one. Or awesome. Astounding. Awe-inspiring.

Thank you

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!

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