Friday, September 13, 2013

Helplessness blows

I was doing so well the last few weeks. I was feeling well, aside from some tummy upset (read: barely being able to eat and always feeling like I'm two steps from throwing up). My psoriasis is more under control, and that's been amazing. I can wear dark clothes without freaking out about dandruff/scale flakes and that's made a difference in my self-esteem so that's nice.

This week though has just been the week from hell.

I got blood work back Wednesday from my rheumy appointment last week. My CRP is back to within a normal range, as are most other markers even though they're at the higher ends of the acceptable scale. My sed rate was about where it was in December though, about 15 points off the scale.

I've been doing well the last few weeks which is always dangerous for me because I start thinking the impossible - that I'm close/heading into remission. It's a bit silly after all this time, knowing my odds of getting there are slim, but reading my results that morning was like being slapped in the face hard by an anvil.

I should be patient and realize that this is great progress for being back on meds for a month, after 3 months of holding due to infection. I should realize that how I feel is more indicative of my health than those tests. I should be proud of my progress and go easy on myself... But I'm not and I won't. I ended up working only a half day at work, which was interesting since I hadn't left early before. As it gets colder, I'm going to have to explain more about my illnesses to all these people and I just really am dreading that conversation. I'm sure it doesn't help me feeling odd that now I work at a university, and I'm being exposed to a million germs from all over the world, but this past week has just been crazy. 

Emotionally, I feel drained. Physically, I feel not awesome. 

It's not that I'm doing that poorly really, but I'm certainly more fatigued and sleeping a lot more. As someone who hates to miss out on things, I just don't like it. But I try not to make a big deal out of it all, both because I know it could be so much worse and because for some people in my life it IS that much worse right now.

My fiance, who has had some rocky past experiences with self-harm and depression, is having a really hard go of things lately. It's been hard to see more and more how he must feel with me, wanting to take away hurts and help with things that no one can. It's hard to be excited about wedding things and want to share that with him or conversely feel terrible and want to warn him or have a pity party day, only to know that it isn't helping the way that he's feeling at all. Things just keep not going his way, and I know there isn't anything really I can do but dammit I want to do something.

My step-dad had a heart attack yesterday afternoon. I don't know a lot of the details, and honestly the doctors don't right now either, but he was taken via ambulance to the hospital. He had a cabbage operation in December, which is like a bypass - except in all six coronary arteries in the heart. At that time, they had hypothesized that he had had at least one heart attack already and the fact that his heart was utilizing some part not often utilized was keeping him alive. He works so hard, but he maybe doesn't take care of himself as well as he should. I guess in that way he's a good match for my mom? Neither of them are good at watching out for numero uno, and I really don't think they will which is sad.

I haven't really been talking to anyone in my family, because I'm either not getting answers or I'm not answering. I feel like I always have to open my mouth and speak out about the things I believe in, and that doesn't gel well with people a lot. I end up pissing a lot of people off, and then they just stop caring if they talk to me. That's just been jolly. I don't even know what else to do.

Life is frustrating, and I'd like a break if we could manage that. If not, could we curb the helplessness aspect?

Bring on the weekend.


  1. Ugh. I am so sorry you're going through all of this, and I wish I could do something to make it easier for you.

    "Life is frustrating, and I'd like a break if we could manage that."
    made me think I have something small I'd like to send you. If that would be OK, you can DM me your address via Twitter (@710dot9). If it's too weird to give your mailing address to some weirdo on teh interwebs, I'd understand that. ;-)

    Take care of yourself!

  2. I'm very sorry to hear this. Someone very special in my life is dealing with a feeling of helplessness, and it is a heartbreaking. All I can offer is my support and wishes that start to look up soon.