Positive News!

Met with my rhumatologist this morning and my labs looked better today! Yeah! That means the Prendisone is doing it's job of keeping my joints and kidneys from flarring up! She is even going to start me on a lower dose so I can hopefully get completely off of it..that is my ultimate goal... to not be on any drugs. This drug also has side effects I don't like, like weight gain and not sleeping well at night so the less I can be on this drug the better! However, I am thankful there are medications out there that are keeping my kidneys from failing and I guess no sleep and some extra weight are a small price to pay than having kidney failure.

She also gave me more positive news! She told me that I do have a chance of my kidneys being back to 100% capability (or close to) someday and she even said granted my biopsy looks good, and I don't need chemo, we could maybe still have more kids someday! (Not until I am in the inactive stage of this disease though and have talked well through it with many professionals...definetely something we won't be discussing for awhile...however very positive news!)

She did put me on another medication called hydroxychloroquine which is suppose to also help protect my kidneys from any future flare ups. She said this drug has very low side effects/risks/etc and most lupus patients are on it. As much as I hate drugs, I agreed to take it out of her recommendation. I'm starting to feel like an 80 year old woman taking 8+ pills a day, but have hopes that someday I will be down to zero or even just 1!

So now I am just waiting to schedule my biopsy and take things from there. Hopefully I will be able to post more positive news in the coming weeks! Thank you all for your prayers and support, there is a light at the end of the tunnel:)

Where do I start?

I've decided to use a blog to write about my new struggles with my autoimmune disease, Lupus. I'm hoping to use this as a tool of therapy and support and also a way of keeping everyone up to date on my health status. I have choosen to name my blog "Perception is half the battle". I choose this name because this is how I look at life. Bad things happen to good people all the time, it's how we choose to deal with these curves in life and perceive them. As long as I keep a positive attitude and perception, I'm going to get through this minor curve in my road of life.

So to start, I was diagnosed with Lupus about 5 years ago now. I was experiencing some joint paint and went in to get it checked out. The doctor referred me to a rhumatolgoist and from there I got some tests done. I don't think I will ever forget the day that the rhumatologist said to me "I think you have Lupus." At this time I had no clue what Lupus was but I was determined to live my life normally and not let this affect me. The doctor suggested I get on a steriod drug called Prendisone. I decided at this time since the only thing affecting me was my joint pain, I just wanted to get on a anti-inflammatory drug and then get off of it right when the joint pain stopped. The doctor was very unresponsive and rude. I took the anti-flammatory until my joint pain stopped, just a few weeks later. I never returned to see this doctor again. Throughout the last 5 years I have had no joint pain. I have experienced a lot of bouts of sickness, ranging from really high fevers to just being extreamly tired.

In May of 2007 I found out I was pregnant and realized I needed to see a rhumatologist again to make sure I could continue with a safe pregnancy for both I and the baby. The new rhumatogist was wonderful and comforted me by saying I would have a healthy and safe pregnancy. Though I was considererd high risk though the 9 months, I really did have a very easy & enjoyable pregnancy! Towards the 8th month my labs, blood pressure, and protein in my urine kept getting worse so on February 11th, 2008 my doctor diagnosed with me pre-elclampsia and decided to induce me 10 days early. The next day, Febuary 12, 2008 at 12:00 PM Nolan Aaron Burau was born weighing in at a perfect 7lbs 5 oz and 20 inches long. The doctors warned me that most people with Lupus will experience a flare up after delivering so I was preparing myself for this. However, it seemed to not happen. My labs were looking really good and I was feeling great! Then, around July 2008 (yes this month!) I started to get the joint pain again. The pain was more intense than I remember it, causing me to have to literally force myself out of bed in the morning. I went back to the rhumatologist to do more labs and to hopefully get on an anti-flammatory. I was just assuming it would be fine and the pain would go away again, however the results were a little more shocking. My kidneys were indeed struggling by showing large amounts of creatine and protein in my urine. The doctor immediately put me on Prendisone and ordered me to see a nephrologist (Kidney doctor).

July 28th, 2008 I get my 24 hour urine analysis back and my kidneys are only working to 55%. I will be scheduling the kidney biopsey and starting the Lisinopril drug. There are a lot of unanswered questions right now, a lot of things going on in my head, a lot of what if's. I do know though that my perception of this is half my battle and I am thankful everyday I can go home and look at my big dimple smiling baby and know that when I do, all my worries go away.