This week seems to be my breaking point. I am now down to 0.5 pills of Prednisone so 2.5 mg and my body hates it. On top of that I can’t seem to get out of this current active flare and I’m worried weekly Humira is showing signs of not being enough.
My body is so weak at this point. It feels like everything aches and I feel like I’m going back to my old flare up more progressively. No amount of Tylenol seems to shake off the joint pain, no amount of natural remedies can sooth the hurt, no amount of Gravol can ease the nausea unless I want to be a zombie all day and just knocked out. Nothing can really be taken to calm my fricken ulcer pain down (which lately is so much more frequent). And the poop attacks are literally nauseating. I mean literally. I have had to pause a poop attack (didn’t realize it was possible) just so I could puke.
I miss being able to pop whatever pill I needed to just to get through some minor aches and pains. Now I feel like I call for pre approval for anything new that I want to try.
It’s all just becoming too much. I can feel not only my body weaken, but my mind too. I feel like I’m giving up. At what point is too much too much? Everyone says I need to get off Prednisone to make myself feel better, with the irony being that I feel more and more sicker as I get off it (I know this is usually meaning my body is showing withdrawal symptoms). But when can I tap out? When can I just stop? Or start?
“It’s just a bump in the road”
That’s what they tell you when things don’t go right. When you reject your first, second, third and now potentially fourth treatment option. It’s okay, it’s just a bump. There’s still options.
But I’m scared, what if there aren’t meant to be any options? Other than surgery I suppose, and I’m not mentally ready to go there yet. But it feels like that may become a more realistic option these days.
I’m just scared.
I feel so out of control of everything, like I’m a walking time bomb. I don’t even know what triggers my poop attacks anymore. It seems lately like just breathing can trigger it.
God, and there’s so much blood.
I was getting better and I think that’s why this is becoming harder. I started to remember what it felt like to be somewhat normal. Where I could kind of do things without serious consequences like staying up late and only getting 5 hours of sleep, or eating an extra slice of pizza, or having plans everyday of the week. I started to remember what it was like to just have bowel movements in the morning and evening, and what it was like to not see blood in my toilet. To poop with little to no pain or tears! To not be embarrassed of my body and uncontrollable gas. I even started trusting my farts again and was able to sleep on my side instead of my back so I didn’t feel like I always needed to run to the bathroom.
But not anymore. We’re basically back to square one but just trying Humira for another 2-3 weeks to see if it helps. I hope it does. I don’t think I could handle starting over again mentally of physically. Its exhausting trying to keep up to your body and distinguishing what’s normal symptoms and questionable ones. What’s symptoms from the disease versus from the medication. Will I start feeling worse and then get better, or will I just pick up where I end off and get better from that point? Will it trigger depression or anxiety? Because I’m definitely done with that. And will I be required to learn a new skills like how to inject myself?
I am scared.
I can only joke about it for so long. I can only push myself so far. I can only try to live a “normal” life working full-time and balancing other things in between for so long. I can only handle the pain for so long. People tell me they admire me for my strength and courage, but the truth is I have never felt so weak. I can no longer take care of myself it seems. And I tell myself that there are people who are far worse than me, but it’s hard to remember that when everyone else around you seems mostly healthy.
I feel like I’m giving up. Like a part of me just wants to give in.
I think I’ll take some time off next week and maybe try to get myself back on track with some rest, positive thoughts, and a re-evaluation of what I need and want going forward. I find more and more that I’m blaming myself for what happened. That maybe I did eat something, or not enough of something, maybe I didn’t get enough exercise or drank too much. Maybe I somehow asked for this indirectly. And I KNOW it’s stupid of me to think, but it’s hard not to go there.
I’m just scared. There’s too may unknowns at this point and I don’t know which direction my body wants to go. I guess I will just have to wait and see in time.