Friday, July 5, 2013

Part two: I have what?!

So, as you can see from my recent updates, I do, in fact have Lupus. Specifically I have Class IV- G (A) lupus nephritis caused by SLE. The "A" means that it is aggressive. I am considered an activity index of 18 (0-24 scale).

What is Lupus? Before this diagnosis, all I had heard was that it was "never lupus". For those who are in the dark as much as I was, here is the description from the Lupus Foundation: Lupus is a chronic, autoimmune disease that can damage any part of the body (skin, joints, and/or organs inside the body). Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years. In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs ("foreign invaders," like the flu). Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body’s healthy tissues ("auto" means "self") and creates autoantibodies that attack and destroy healthy tissue. These autoantibodies cause inflammation, pain, and damage in various parts of the body.

How am I dealing? It has been rough. I am on A LOT of medication. I take 8 pills in the morning, 2 at lunch and 5 at dinner. The medication makes me hungry, irritable, fuzzy headed and nauseous. I have horrible swelling in my legs from my kidneys being sick and I am on a low salt, low potassium diet (which SUCKS). I  am emotionally coming to terms with it all. For someone who is young (29), who doesn't drink, doesn't smoke, and eats healthy... I shouldn't be sick. It's just not fair. I've had to wean my son before we were both ready, and I feel like a damn hermit stuck inside my house.

What the Doctors are saying? As of today, my creatinine levels are stable at 2.0  (normal is 0.5-1.1). My potassium is still high but the amount of protein leaking has come down a tiny bit. My blood count went back up, which they were positive about. But I want results... faster. I want to see my ankle bones again. I want to stop feeling so sick. I am suppose to be on all this medication for most of the summer and into the fall. I will be on medication indefinitely to keep the "flare-ups" at bay. I asked about having children in the future and he put me on a medication that doesn't cause infertility (thanks).

My Plan: Take it week by week, day by day, bit by bit.