What’s Been Going On

Well, I found out last week that I have a lifelong disease. It’s quite treatable, but there is no cure.
I started out with the weirdest symptoms back in December, and kept getting worse and more tired. Eventually I was almost too exhausted to work, I had puffed up, and then the stomach pains started. I went to the doctor and they suspected pancreas problems, but I had labs and ultrasound, and they only found some oddities in my blood. By two days later, I felt worse, and the toxins in my blood had doubled and I had gone horribly anemic, so I was shipped off to hospital for more bloodwork than I thought I had in me, and a lovely kidney biopsy. After ruling everything else out and reviewing the symptoms, the diagnosis is Systemic Lupus – an auto-immune disease that was trying to kill my own kidneys, blood vessels, connective tissues and other stuff. I was pumped full of IV drugs and pills for four days before being released.

Been resting, gaining some strength back. I’ll be going in to work for 4 or 5 hours today.. they need me, and I need the income. ^_^;

This has been a very interesting two weeks. Went from tired to exausted to sick to really sick to hospital.. my body still doesn’t really like the drugs they’ve got me pumped full of. Why would it, they’re suppressing my immune system! But, it’s either have little immune system, or have a full one that’s trying to eat me alive. Hm.
However, the main drug I’ll be taking for at least two years, is a drug they give transplant recipients – an anti-rejection chemical concoction that I have to take 4 of every day. And the stuff is a bloody fortune. $200 more per month than my damned apartment. I must say I am incredibly lucky that I have a single father who is willing to shell out that much money – I have no idea what I would do otherwise. I just spent some time on a prescription assistance site and found that through those I can only save about $100 each month even off of Costco’s price.. sigh. Have to call the drug company and see about their assistance program. I wonder if they only offer that program to real transplant recipients or if they count Lupus patients too…
The Prednisone I’m on is screwing with my metabolism, blood pressure, and senses. Luckily I will be slowly weaned off of that crap. My hearing is heightened to an almost bothersome point, and I can smell bad things better. I need to get after my Converse. 😛

I never thought I’d end up with a lifelong disease/disorder like this. I guess no one ever thinks of something like that. And the diagnosis could have been much worse. Even Diabetes is sometimes harder to manage than Lupus, and though I now have to get weekly blood tests (only for a few months hopefully) it’s much better than having to stick myself with insulin every day. I don’t know that I could do that. With Lupus, I just have to keep up with my meds for a long while, and watch for symptoms. Now that the disease has come out, I REALLY have to stay completely out of the sun.. I already had to with my fair skin, but now not only can I burn, I can get horrible rashes. Greaat.

But thanks to my wonderful friends and family, I’m getting through the stress and looking forward.

Now Andrew, if you read this, you can laugh – I really should live in a plastic bubble 😉

One Comment

  1. Woah – that sounds like you’ve had a rough couple of weeks. I wish you all the best.