Something must be wrong – I’m leaking out of my eyes

This past week has been a very tough week – well, it’s been a tough few months to be honest, but this last week it’s as if things came to a head. The regular readers of this blog are like family. I wish I could share with all of you the entire picture of what’s going on, but right now the timing isn’t right for that.

Many of you have e-mailed me privately to ask what’s going on as you’ve noticed here, on the listserv and on facebook, I haven’t been myself. If you ask me privately, I’ll share with you what’s going on. I just can’t put it out in the public quite yet.

But I can tell you part of the story.

Wednesday, I think, I went to the doctor about my acid reflux, as well as all the other stuff going on with me like the almost constant headache I’ve had for weeks now, the blood pressure that seems to think it belongs on a roller coaster, the runs that I now have more often than not etc. These are all symptoms of stress, I believe, and not HPS. But, they sure has heck are not helpful to my HPS.

The acid reflux is my big worry. It’s been so bad that it isn’t just coming up, it’s coming out. I’m afraid one of these days I’m going to aspirate that acidic yuck into my lungs – and I’ve been to enough sessions at the American Thoracic Society on pulmonary fibrosis to know that’s not good.

I’m also worried about the tummy troubles – I think right now they’re stress related, but I can’t help but wonder if all this pressure on my system could help to bring my GI issues (which have been in remission) up again. That scares me because many of the drugs used to treat the GI issues would kick me out of the drug trial for my pulmonary fibrosis.

In short, I know that all this stress isn’t helping my overall health condition.

It also isn’t helping my mental health. I have a pretty good memory generally. Lately, however, I forget everything. If I didn’t have an alarm everywhere for my meds, I’d forget those. I forgot that a good friend of mine was getting the lavage this week. Totally spaced it! And I had wanted to be of support, to call her and chat etc.

And work? OMG – I have the concentration level of a nat. It’s not fair to the innocent people that have to work with me.

There is a lot brewing at work, and I have very good reason to believe I won’t be there much longer. This tough economy is hard on everyone. It requires that everyone do ten times as much with half as many resources. The problem is I’ve been working a lot of overtime, and the more overtime I work the more all my little pesky health things seem to act up. It’s one thing if it’s now and then, but week in and week out is just too much for me right now. And perhaps worse, no one seems to notice the hours I’m putting in. That’s incredibly demoralizing and takes its own toll – you start to feel as though you’re in a deep hole that only gets deeper and you’re never going to get out. People are just going to keep chucking more things down the hole at you until one day you’re completely buried. And then you’re going to get yelled at some more for being buried – how dare you after all.

Add to this the recent losses in HPSland, the dire financial issues of the HPS Network right now and all the things that the HPS patients and greater community are in so desperate need of and yet aren’t getting done.

This week it all just backed up on me in a big way.

I went to the doctor, as I said. I feel sorry for doctors seeing me for the first time. They must think I’m a nut. I talk super fast and spew a book load of information at them because I know we’ve only got minutes and I don’t want to put them behind. It’s too much for any person to grasp at one time.

So here’s this poor junior doctor and I come at him with the entirety that is my life. He doesn’t know where to start. He asks what I primary complaint is, and I answer the reflux.

He disappears to consult with his superior and leaves me in the exam room. I’m sitting there, just having spewed all this information, and I realize that all he’s heard is “acid reflux.” I realize that the problem is so much bigger and beyond that. I realize that what I really need is for some schmuck in a white coat to step up and help me – and they’re focusing only on the complaint of the day.

I start to cry. I don’t cry easily and I especially don’t cry in front of doctors. But once I started I couldn’t stop.

The senior doctor came into the exam room and I tried to act like nothing was wrong. Who was I kidding? She asked if I was crying, and I started sobbing. I was sobbing so hard I could hardly even talk.

I got referred to a hospital social worker and I’m working with her and others in my medical life that know me well and know this is not me. We’re trying to devise a plan that would protect my best interests and provide me with health coverage and something to live on.

Finances are about to become incredibly tight.
But something has to give.

I’ve tried to do things to change the status quo for some time now, but it’s been hard to do that while keeping my head above water at work and trying to deal with HPSland too.

If I have to make a choice, and right now I have to make one, I choose HPSland – even though I have no idea how that’s going to work out. It’s not a choice really. I couldn’t possibly spend every waking moment of my life at work and never think of you all, even if I did step back from my responsibilities. And I can’t step back from those. They are the one thing in my life that I enjoy and that I feel really good about. So, at this time there is no choice.

I don’t know what the long-term picture will look like. Right now I’m focused on finding a way to survive.

I feel like for years now I’ve been standing at the edge of a cliff fighting off a pack of wolves. For years I’ve been able to entertain the wolves, distract them, toss them some meat – but I’m out of resources so I’m either going to be eaten, or I’m going to jump off the cliff and hope God helps me to sprout some wings.