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 thesaurus.com.

A day in the life part two: the rest of it

So yesterday I talked about feeding tubes in general and my earlier tubie days, and now I’m going to talk about the rest of it.

After my surgery it took a few months for me to adjust to it all and get myself into a routine, but by the spring I was doing really well with my feeding tube! I was gaining weight, I had more energy and while my symptoms were still present they were being better controlled. And once I got the portable pump and could run my feeds during the day, free from an IV pole, I was actually able to live in the real world a little bit. Probably the most fun I had as a tubie on the go was being able to go my best friend’s convocation ceremony. Photo evidence of said shenanigans:

BFF Convocation

Out in the real world I also acquired many anecdotes about pump alarms going off in public and other peoples’ reactions to the whole feeding tube situation. Stories for another time.

Unfortunately my feeding tube success was short-lived. By the summer things were going downhill and by the fall I was in the hospital on TPN. Which brings me to lifeline number two. My central line:

Feeding Tube Awareness Week (8)

I wrote several posts during my time in the hospital that talk more about TPN, but here’s a quick refresh. TPN stands for Total Parenteral Nutrition. Enteral refers to the GI tract (tube feeding is called enteral nutrition), the prefix ‘para’ means beside or to the side of, so put it together and ‘parenteral’ nutrition is nutrition that doesn’t involve the GI tract and instead is delivered intravenously. Because TPN is really hard on veins, it can’t be administered in peripheral IVs, the ones you usually see in wrists and forearms. Instead it must be delivered through central line IVs. My central line, as you can see above, goes into my chest and then is tunneled up under my skin, over my collarbone to where it actually enters my circulatory system at my internal jugular vein. From there it is threaded down through my veins and the tip sits right at the junction of my superior vena cava and the right atrium of my heart. There’s another children’s book in that journey, I’m sure! Up close you can actually see and feel where the line is tunneled…cool? Creepy? Perhaps a bit of both.

Unlike feeding tubes which don’t require sterile care but just the same amount of cleanliness you would use for preparing food, because this line goes directly into my bloodstream sterility is of the utmost importance. Basically this translates to a ton of hand sanitizer and alcohol swabs up the wazoo. It makes showering an adventure in saran wrap and tape. Similar to my feeding tube, I can’t feel this line either. It does, however, feel cool (temperature wise, not like “wow, cool!”) when I flush saline through it.

What most people don’t realize is that TPN is usually specially formulated for the patient. With tube feeding, there are tons of different formulas available and different people will use different ones depending on their needs, but my TPN is made specifically for me. I get bloodwork done every month to monitor my electrolytes, blood chemistry, hydration status and liver function and then if any of those levels are off my TPN prescription can be adjusted accordingly. The TPN itself is made at a pharmacy in Calgary, gets shipped to the Burnaby location and then is delivered to me every two weeks. In order to prolong the life of the TPN so that biweekly delivery is possible, it must be kept in the fridge. The bag comes with two chambers, one for lipids, and the other for amino acids, dextrose and electrolytes. Right before I hook up for the night I remove the divider, mix it all together and use a needle syringe to draw up and add two vials of vitamins.

So here’s what 24 hours of keeping me alive looks like in medical supplies:

Medical Supplies (6)

Yeah, I have a sharps container in my bedroom…you don’t? And yeah, that’s a lot of packaging and waste, however thanks to my aunt the recycling guru we have found a way to really cut down on the garbage! If that’s just 24 hours, and I get two weeks of TPN supplies at a time, plus feeding tube supplies, you can imagine that storage becomes an issue. Basically this means that I have medical supplies stashed everywhere…I’m pretty sure there are even some cases of formula in the shoe cupboard under the stairs. Oh, and then there is the full size fridge for the TPN itself.

Medical Supply Storage

And even though I’m on TPN right now and not using my feeding tube for nutrition, I still use it every day. I take most of my meds through my tube, either in liquid form or crushing up the pills that I can. Sometimes just drinking enough to take pills can make me nauseous and bloated so bypassing that is a huge relief. Plus there is the fact that when your stomach has somewhat erratic function being able to put meds right into your intestine, instead of waiting hours and hours for them to kick in, is a big help.

So all of that is how it works. But what does actually living it look like?

Well, sometimes, with the right lighting, a well-timed shower and a spurt of energy, it can look like this:

New Year

But far more often it looks like this:

Feeling sick (8)

Lying on the floor because I’m too lightheaded to sit or stand, ice pack around my neck to try and calm the intense nausea, dark circles below my eyes (and actually above them too, because I’m just that skilled). And often it looks like this:

Feeling sick (10)

Done. Just so done with the day, with life, with reality. Ice pack on my head because it’s the only thing that soothes a two-month headache, no energy to keep my eyes fully open. And, since I’m already sharing the selfies that are going to turn me into a model one day, a lot of times it looks like this, too:

Feeling sick (9)

Also done. Hair that needs washing, puffy eyes from new medication that isn’t even working, desperately wishing for a break from my body.

Sometimes brushing my teeth is enough to make my heart race at 150 beats per minute. Sometimes taking a shower is enough to knock me on my back for a day or two. Sometimes I can’t sleep at night because I’m nauseous. Sometimes I’ll be okay one minute and lying on the floor with my feet up in the air the next in an effort to avoid potentially passing out. Sometimes I feel hungry, take a few bites of something, and then spend the rest of the day paying for it. Sometimes I lie on my bed for hours doing nothing, not sleeping but not really awake either. Sometimes I go crazy with boredom because I have no energy to do anything, but enough mental energy to know that doing nothing is boring. Sometimes I cry because I’m impossibly frustrated with my life. And sometimes I yell out, “That’s it! I can’t be patient anymore! This isn’t fair!” and then I slump down to the floor because I know there is nothing I can do but keep waiting, remain patient, and accept that life isn’t fair.

There’s a difference between being alive and living, having a quality of life. That’s where awareness comes in. And that’s why I’m writing this, in the hopes that more awareness will lead to better understanding, better treatments and ultimately a better quality of life. I’m writing this in the hopes that one day I won’t have to risk serious infection or liver failure in order to live. I’m writing this to make the invisible parts of my illness a little more visible.

It’s really hard sometimes, but sometimes it’s really wonderful, too. Everyone can relate to that, I think. At the end of the day, don’t get me wrong here, I’m incredibly grateful that science has figured out a way to keep me alive even though I can’t eat. At the end of the day I’m incredibly grateful that there are still reasons to smile and laugh.

And I’m also incredibly grateful for you, for taking the time to read this and making me, and everyone else facing the same struggles as me, feel a little less invisible.

So thank you! And once again, Happy Feeding Tube Awareness Week!

Feeding Tube Awarness Week

A day in the life part one: Feeding Tube 101

Happy Feeding Tube Awareness Week! The Feeding Tube Awareness Foundation started this awareness week in an effort to eliminate the stigma around feeding tubes and celebrate the lives they make possible. The theme of Feeding Tube Awareness Week this year is “the truth about tube feeding” and the focus for today is education, so in the spirit of it all I’m sharing a little bit more about the medical-y day to day of my life. Today is Feeding Tube 101, and since my life got slightly more complicated when I started TPN in the fall, tomorrow I’ll talk about the rest of it.

Disclaimer, my day to day life is not going to be the same as someone else with a feeding tube. There are hundreds of different reasons why people need tubes, and as such everyone’s day to day will be a little (or a lot) different.

Let’s start with a crash course in feeding tubes. There are many different brands, styles and sizes of tubes. And now a rhyme:

Some tubes are short. Some tubes are long. But all tubes just want to feel like they belong!

But really, there are so many different kinds! Let me decode them for you: G=gastric, or into the stomach; J=jejunal, or into the jejunum which is the second part of the small intestine; N=nasal, through the nose; Fr=French, which is the unit of measurement used to describe feeding tube diameters. G tubes are used when the stomach still functions properly. Depending on why someone has a G tube, they may do bolus feeds, which means a large volume over a short period (much like a regular meal) or continuous feeds, which involves a set rate of formula per hour over many hours. J tubes are used when the stomach function is impaired and the formula needs to be delivered directly into the intestine. J tube feeds must be delivered continuously at a lower rate because while the stomach has a ton of reservoir volume, the small intestine has a much smaller capacity. And to make things even more confusing there are also the hybrid GJ tubes, which have access to both the stomach (G) and the intestine (J) all through the same stoma, or opening, in the stomach. Those are the basics, but tubes can also be differentiated by make, placement and style.

Fun (irrelevant for most people reading this) fact: I have a 16Fr Mic J tube.

Once upon a time, in September and October of 2013, I actually had an NJ tube (nasal-jejunal) which means it went up my nose, down the back of my throat (yes, I could see it when I opened my mouth), down my esophagus, past my stomach, through my duodenum and into my jejunum. Quite the journey really…perhaps I shall write a children’s book about it! Nasal tubes are usually used when tube feeding is temporary or as a trial for tolerance to tube feeding before placing a more permanent one. Here’s what I looked like for 26 terrible days with my NJ tube:

NJ tube collage

I (un)affectionately referred to this tube as Babar. You can see the resemblance, right?

King_Babar

Despite my smile, I really wasn’t lying when I said those were 26 terrible days. I’ll spare you the traumatic details but I ended up having it pulled six days early in the ER because I could not tolerate it any longer. But regardless of how awful that time in my life was, I mostly just shake my head and laugh about it now.

I started with an NJ tube because the hope was that it would just be temporary. I gave it my best effort but my need for nutritional support persisted, which is why I had my J tube surgically placed in January of 2014.

Here’s a picture that shows both my lifelines, my feeding tube and my central line:

Feeding Tube Awareness Week (2)

My feeding tube (the one in my belly…duh) was surgically placed right into my small intestine. It hurt, a lot. The surgeons all said it shouldn’t cause any post-operative pain, but I would like them to plant foreign objects in their abdomens, leave them there, and then get back to me on that. It was a good eight to ten weeks before I was completely pain free, but by that point in time I was well underway in my never-ending battle with granulation tissue, a battle that continues to this day. If you haven’t read my posts from last spring where I’m pretty sure I talk about granulation tissue a lot, it’s basically tissue the body produces to try and heal wounds. In most cases this is a good thing but in the case of having a feeding tube where you need that stoma to stay open, granulation tissue is bad. I have tons of pictures (seriously, I have so many) of my poor stoma overrun with granulation tissue and covered in ugly stains from trying to burn it off with silver nitrate, but don’t worry I won’t share those with you! You can look at these pictures instead!

Tubie on the go collage

Other than feeling some pressure from the balloon if the tube gets snagged, I don’t feel it inside me. I do, however, experience discomfort when I flush larger volumes of water. And if the water is really cold I can feel that, too! There are days when it is very painful and days when I forget it’s even there, and so far I can’t figure out a rhyme or reason for that. Here’s a random tidbit for you…oftentimes stomachs or intestines will try to digest feeding tubes. By this I mean that normal peristalsis is taking place inside the digestive tract and the internal parts of the tubes get pulled along, sucking the tube in tight against the skin. I like to think of it as a game of tug-of-war between my intestines and the outside world. Basically it’s just annoying and vaguely uncomfortable, though sometimes it’s quite painful.

Before I had gastroparesis and before I knew much of anything about feeding tubes, the truth is that I thought they were pretty icky. In my earlier days of gastroparesis when feeding tubes were something only the really severe cases required, I still thought that. And honestly? They’re not exactly glamorous, but having a tube? And using that tube in public? There’s nothing gross or icky about that! Someone tube feeding in public should be seen no differently than someone eating ‘normally’ in public. Flushing water through a tube should be seen no differently than someone taking a drink from a water bottle.

Feeding tubes are not something to be feared. Some people can’t walk and they need a wheelchair. Some people can’t see and they need glasses. Some people can’t eat and they need feeding tubes. It’s as simple as that.

Feeding tubes aren’t the magic solution for everyone, as mine certainly wasn’t for me, but they do keep people alive and they help people thrive. They allow babies to grow into children, they allow children to grow into adults, and they allow adults to keep living. They aren’t contagious or scary. They’re real. They’re just part of real life. And there shouldn’t be shame or embarrassment associated with anything that gives you have a chance at a life.

So Happy Feeding Tube Awareness Week! It’s all about awareness, so please, if you have any feeding tube questions whatsoever, ask away and I’d be happy to answer! And may all the tubies out there, past, present and future, bare your bellies with pride 🙂

FTAW