Just one thing

Well, it’s back to the drawing board. My career as a lady in waiting was very short-lived!

I am writing this from St. Paul’s hospital, where I have been since Monday afternoon. Timing worked out in my favour and I was able to get started in the home TPN program right away. So far ‘TPN school’ is going very well. I expected to be really overwhelmed by everything but surprisingly I am feeling very calm and confident. The manual I was instructed to read through before coming here states that “any bacteria that comes in contact with the inside of your central venous catheter or TPN system can be a threat to your life” and that definitely freaked me out a little bit. I already knew that about central lines but seeing it in print applied to my own life was a bit different. All in all, though, everything is really straightforward and some of the steps even appeal to the science student in me – such as using a needle syringe to draw up the vitamins and inject them into the TPN bag – it’s like being in the chemistry lab all over again!

Honestly, the most overwhelming part is trying to comprehend how I’m going to schedule the TPN and the tube feeds in the real world. It’s perfectly normal while in the hospital to be connected to at least one line all the time, but it’s a little less practical in the real world. Ideally I would like to try and have an hour or two of freedom a day in order to easily partake in real world activities, notably regular showering, but I would also like to avoid having to carry around two backpacks at once. It’s going to take some time to figure out a routine once I’m home.

But speaking of home, I am likely going to be discharged this Wednesday or Thursday! My PICC line is proving to be rather difficult to work with so I am having a tunneled central line put in my chest on Monday morning. If you google ‘tunneled central line’ you might read that it is a surgery performed under general anesthesia, and while that may be the case some places, that’s now how they do them here. My line will be placed in interventional radiology with local anesthetic and mild sedation – well actually I’m not 100% sure about the sedation part as different people have told me different things. I suppose I will find out on Monday! The doctors say it won’t hurt but I’ve heard differing things about that, as well. Just another thing to find out on Monday!

I cannot wait to get home! I miss my bed, I miss my room, and I miss my bathroom. I miss being able to get whatever I need instead of having to ask people to bring things when they come visit. I miss being able to go up and down stairs and I miss easily walking around outside. I miss being able to take meds on my own and grab whatever medical supplies I need without having to ask a nurse to find me something. I miss my independence. I miss having peace and quiet.

They say that absence makes the heart grow fonder and in this situation they (who ‘they’ are I’m not quite sure) are definitely right. I can guarantee you that when I get home I am going to completely relish all of those things that I miss.

But for how long? Next week will I still be grateful to have the PICC out of my arm and have both hands free? No…I’m probably going to be sore and annoyed that I need a central line at all. Two weeks from now am I still going to be excited that when I want medication I am able to take it right away without waiting? No…I’m probably going to be discouraged that I still feel sick and even need to take medication at all. A month from now am I still going to be grateful that the TPN is keeping me alive? No…chances are I am going to be frustrated that I can’t just eat and live the normal way. Will I always be happy to be home? No…I’ll probably be unhappy that my illness requires me to spend so much time in the house.

We want what we can’t have. We forget how bad things once were. We lose sight of how things have improved and instead focus on the things that are still hard. Things could always be better, but things could always be worse, too. We just often focus on the things that could be better instead of expressing gratitude for the things that could be worse but thankfully aren’t.

I’m not saying that we should settle when things are bad and just be happy they aren’t worse, especially if we have the power to change them. And I’m not saying we can’t be upset over our hardships because that’s not realistic and that’s not healthy. But since there are always going to be things about life that we don’t like and we can’t change maybe we could pick just one of those things and let it go. Maybe we could pick one of those things and reframe our thinking so it doesn’t seem so bad.

For now I pick having a central line. I don’t have to be happy that I need TPN, but at the end of the day, happy or not, I am going to have a central line. And since that’s the case, at least I am able to have my PICC line replaced by something that is easier to handle and maintain. At least I will be able to use both hands and manage it all on my own. At least I will be able to have a little more independence. In that case, having a central line doesn’t seem quite as bad anymore.

Just one thing. It’s not so hard. And who knows, maybe the change in attitude will catch on and before too long life will seem all around a little better and a little easier.

I’d say it’s worth a try.

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.