[Image shows three spoons on a laptop keyboard. Overlaid is a clipart of torn white notebook paper with a red paper clip. On the paper in black text reads “When it All Becomes Too Much” and below that is a floral circle with a pink circle featuring white cursive text that reads “don’t lose hope”. At the bottom of the banner is the URL for Thee Crohnie Grace Blog]
There are some weeks when the negatives keep piling up faster than the positives can combat them. That has been the last week and a half for me. Doctors are playing phone tag, Nurses can’t seem to figure out how to access a simple port, still no nutrition or NJ tube, my primary forgot to fax lab orders to the infusion clinic, turns out the lab itself can’t draw labs from a port, so I got stuck a couple times, and on top of all the normal things that come with having various chronic illnesses… I broke a nail.
It just keeps knocking me down. The second I start to gain a little positivity, something else just knocks me back down a peg. Since having to pull my NJ tube last Monday, it’s just been a steady slope. And to be quite frank, I’m getting fed up with it, I am so tired. It’s a vicious cycle with chronic illnesses of trying to stay afloat in rough waters. No matter how many waves keep pushing you down, drowning isn’t a choice. And sometimes you will gain the upper hand, find the light and the good in all of this crap. But there are weeks, where the good seems fleeting and it’s hard to stay afloat. It would seem much easier to just give up and drown.
But I can’t lose hope.
All last week was a constant battle with my doctors. For some reason the radiologist who typically would replace my feeding tube, is not in his office for the week. So they told me the only way I could get it replaced (maybe) was by going to the ER and waiting there, getting accessed, getting labs I don’t really need, and waiting for who knows how long when they may not be able to do anything about it.
I hate the ER. I hate it more than I hate anything else. The entire environment feels judging. And after being there so many times this year, they know my face and name. Only upping the judging factor. So there was no way I was going there. Of course now that it’s been a week or so and I’m feeling the effects of no nutrition, I’m contemplating just going and getting it over with. But I basically told the doctors that it was their problem, not mine. And I wasn’t going. I was fed up.
Then comes my 3rd Entyvio infusion on Friday. The nurse couldn’t find my port, cause it’s deeper than most. (Let the record show, she is the only nurse to ever have an issue finding it.) And so when she stuck, she missed my port. She tried to push saline anyway and it burnt. I panicked and told her to stop and remove it. Rather than listening to me, she used her free hand to hold me down and told me to stop moving. And continued to dig around my chest til she could get the needle in the port well enough to draw back blood and push saline. Which still hurt from it barely being in the port.
[Image shows me with short red hair, green glasses, puffy red face from crying. I’m wearing a white tank top with black designs and a black and white cardigan. I have a Star Wars lanyard on and white dressing and IV line tubing coming from my chest from being accessed.]
I was basically nonverbal the rest of the infusion, relying on my phone for communication and also using my grounding app to try to calm down enough to speak. A nice lady with purple hair came over when she heard me crying and upset and gave me a purple bracelet. It had little stick figures in dresses made out of purple awareness ribbons and said “We’re In This Together”. It put things in prospective for me, and gave me the push I needed to calm down despite the nurse making a rude comment about how I was on my phone the entire time, and then trying to hug me afterwards. I do not like being touched when I’m upset, so this only upset me more.
Once I got home, I was greeted by my puppy, and spent time on the porch with her while calming down.
[Image 1 on the left shows me on the porch with a forced smile and my yorkie on my lap. Image 2 on the right shows a corner of my garden where some of my flowers were starting to bloom, they are purple and on a long stalk.]
The same stuff has continued, they forgot to send my labs to the clinic so my Doctor called and said I could go on Tuesday (today). Still no word on an NJ tube. I have been trying to eat little things here and there but most of it still comes up. And it’s incredibly frustrating because my grandma still tries to get me to eat. And even when I say no because I’m not hungry or nauseated, she pushes it. I get she is worried but it drives me insane.
To be honest, almost everyone and everything is driving me insane this week. I can’t think of many people who haven’t made me want to bang my head off of a wall. I’m just overwhelmed to the brim with so much and people keep piling on. And it may not even be something they mean to. I just am frustrated and bitter. I’m tired.
I’m fighting a losing fight it seems. Where I wrinkle my nose in efforts to push back tears every couple of minutes. I’m just at my wits end with it all. I want so badly to throw in the towel and say “Screw this. Screw all of this. I am so done.” I’ve fought long enough, right? It’s good enough? Can’t I just get a single goddamn break?
But I think of the woman at the clinic, and look down at the bracelet she gave me and remember I’m not the only one fighting. I’m not alone. And that’s worth fighting for. Even if I’m not fighting this fight for me, I’m fighting it for someone. I think to myself there are so many reasons to be happy and I can always find some reason to make me feel happy that I am alive. I think of all that I have overcome, things I NEVER thought I would be able to do, but I did. I think of all the good I have done, the messages I get flooding my inbox about how I have inspired them, how I’ve made them look more positive at their own life, how I’ve given them the courage and the strength to overcome their own struggles.
I think of all the people who have told me, “I’m really glad I found your blog. I never knew anyone in my life who I could relate too.” or “You’re incredibly inspirational and it makes the loneliness a little less intense. Thank you.”
I think of all the friends I wouldn’t have today if it weren’t for illnesses that connected us online. I think of all the lives I may have an impact on around me, online, people I’ve never met who I have made their day a little brighter. And I start to smile again, my voice starts to gain it’s chime back, my eyes light back up and I sit up, grab my laptop, and remember that I have so much to be thankful for, so much going for me, and that I am not going to give up, I’ve still got a lot of fight in me.