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.
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.