side effects

I am having to make a checklist now of all the meds and how often to administer them. Here's what I have so far:
Iron- 3 times daily
Folic Acid- half a pill, ground, mixed with orange juice once daily except on Methatrexate day (Thursday)
Naproxen- twice daily
Methatrexate- oral, once weekly
Enbral- injection, once weekly (I refuse to give this one. I will be running Baby Jack up to the Fire Station to see daddy on Thursdays)
Steroid- once daily

Does this sound crazy to anyone else?
On top of it, I can expect diarrhea, weight gain, aggression, appetite surge and extreme thirst, susceptibility to catching illnesses due to a compromised immune system, bloating and puffiness (aren't we trying to rid the puffiness?), sleep issues, possible hair loss, and a slew of other things I don't even want to think about.

Last night we were up for 4 hours with vomiting. And we just kept asking ourselves, "is this because of the medication?" How are we suppose to know when he is ill or it's just a side effect of this enormous medicinal cocktail?

I called St Louis this morning and spoke to our nurse. She is so nice (although she gave us a thrashing for not immunizing Jack.) I told her about his crazy behavior the last few days- tantrums like I have never seen before, fidgeting, and sleep walking. She told me that this was normal, expected behavior due to the drugs racing through his little body. But just because he is ill and medicated, doesn't mean I shouldn't and can't still set boundaries for him. When he screams for 30 minutes, turning red and sweaty, thrashing around on the floor and coming close to vomiting and hyperventilating, it's just the medicine "talking" and to keep that in mind. At the same time, I can put him in time out and explain that this is inappropriate behavior. Yeah, right. Sounds like a plan.
She did ask me if I was seeing any improvements and I have to admit that we really are. So there's the catch.

It's going to be a long summer, I think. I am kind of feeling sorry for myself today. Can you tell? I think any friends we have might not want to be around us unless we can hire a babysitter- and that might be short-lived since one tantrum could make them decline any more evenings alone with Baby Jack.
In fact, I would like to decline evenings alone with Baby Jack. He is exhausting to be around. I had to send out an S.O.S. to the fireman yesterday that if he wanted to see his son alive he needed to meet me at the car and take over while I went inside and locked myself in the bathroom. (Have I mentioned that I love this man? He understands. He doesn't make me feel bad for chickening out on the injection or occasionally wanting to huck Baby Jack out the window. And he does all the clean up when the vomit monster emerges from one of our children- I sit in the corner, rocking back and forth, paralyzed at the sight and smell.)

I am tired of cleaning up nasty, smelly diapers- the kind that make me choke and throw up a little in my mouth. Jack isn't afraid any more when I come in the room with a bandanna tied around the lower half of my face. I think he thinks we are playing "Cowboys and Indians" when all I am trying to do is not lose my morning coffee. There is something absolutely sickening about "iron" poops.
I'm tired of being irrationally mad at people. Like at the friend who told me when Jack broke his foot that everything would be fine. "Just wait and see. Before long, he will be up and around and better than ever." Still waiting on that one. And. although I KNOW it doesn't makes sense, I feel cheated and that it's her fault for setting me up for this huge disappointment.
I am tired of hearing my girls being terrorized. I hate that I have to explain to them that Baby Brother can't help it if he tries to bulldoze them and that they have my permission to lock their bedroom door to escape him. (Anyone want to come over for a play date?)
I realize that I am suffering side effects- like second guessing everytime he doesn't eat or eats too much, is constipated or has diarrhea, has fever, sleeps a lot or not at all, if I should spat his bottom or not. Do I discipline him differently since he is ill? Absolutely. Should I? Absolutely no idea. Can I help it? Absolutely not. It is always in the back of my mind.

I wonder if I will come to a point when I don't look at him and see the disease. Will I be able to see Jack and not 'Jack with JRA '? Will I ever feel like this is normal? Will I get used to this?