So my hives are completely out of control again, and I got hit so hard with fatigue this afternoon that I had to leave work early. I came home and slept for 3 hours.
I’ve been trying meds again that didn’t work when this happened last fall – the difference being that by the time I got to an allergist last October, the ER had already put me on prednisone, and that complicated things. The hope was that the antihistamines would work this time. They’re not so far, and I’m not hopeful.
I’ll likely end up back on Xolair, which I can’t afford and need to apply for aid to get. I got aid last time so not worried about that.
What does worry me is that it seems like I’m going to need the worst case scenario drug. So I think things like, what if the lupus never lets up off attacking my skin and I become a long-term Xolair patient? What if Xolair stops working? What about the side effects? It makes my hair fall out.
This is about the point where I start to get despondent and wonder how the hell I’m going to be able to be a grad student and work full-time and have Lupus. So this is also the point where I’m grateful for all the lupie and chronic illness blogs I read.
Seriously, these bloggers give me life. Like, none of us asked for this shit, but here it is, and we have to keep living. We have to do our best to not let it totally derail us. I hate warrior rhetoric as a rule for chronic illness or bad stuff like cancer, but at the same time…I have these inner reserves of tenacity that I need to tap into. I have a lot of fight in me, and that’s exactly what I need.
People who share their experiences do help me. On days like today, it helps to be reminded that its okay to not be strong all the time. It helps to be reminded that we all have days like this.
It helps to hear them say, “Its hard, and we all get discouraged sometimes, but don’t give up.” It helps to have encouragements and positive affirmations.
I feel awful today, but I’m not going to wallow in it. I’m frustrated now, but tomorrow morning, I’m getting up and I’m dealing with this damn flare. That means trying some med combos and being patient for the next few weeks to give them a chance to work.
Ultimately, I think I’ll end up back on Xolair. So, okay – there are two levels of aid to apply to. I got that. I’ll need monthly injections and I need to get them at 1pm – my boss will understand, so I’ll talk to him. I have plenty of Cortisone 10 to get me through the day, so that’s covered.
The fatigue, well…I need to keep recognizing when my body needs to rest. My boss has told me I can go to reduced full-time if my health requires. I’m trying to avoid that…but it’s there if I need it.
I don’t like this…but I got this.I can do this.