Wednesday, July 30, 2008

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.

7 comments:

OliversMommy said...

it'll be ok! i'm always here if you need someone to talk to

Meagan

April said...

Wow-thanks for sharing! I will be praying for your health. Please keep us updated.

Anonymous said...

Dear Anne,
I remember the day when my mom and I were discussing why your cousin got cystic fibrosis and how hard it's been for her,her folks and sister. She said God only gives struggles to those who He knows can handle it. You have lots of family and friends to help support you through your struggle too and I know you CAN handle it! You're strong and have a loving husband and the cutest little boy to lean on too along with the rest of us. Stay positive. It will all be OK.
I love you,
Mom :)

Anonymous said...

Anne-

I am praying for you..what a struggle you must be going through..but as you and your mom have said, God doesn't give you more than you can handle. You are and always been a strong willed and determined person. You will get through this!! If you need anything, please let me know. Also, one of my good friends lives in the cities and has lupus (she got diagnosed while studying abroad in Australia). If you want her contact info for support or questions, please let me know. She would be happy to do whatever she can for you.

Kristin:)

Anonymous said...

Hey Anne,
I think that it is so great how you look at all this, and that you know that God is there for you, along with your family! That is so important. I am just a call, and a block, away from you if you need anything!
You are an inspiration to me Anne, to do all you have done and continue to do with such a positive outlook!
Thank you and I will be keeping you in my prayers!
Always,
Maria

Anonymous said...

I never understood why bad things happen to good people...but I do know that you are a "tough cookie !" Knowing that gives me all the faith that you will reach that light at the end of the tunnel !
You are never alone, so utilize all those who love you.
Keep your chi girlfriend posted by the way !:-)
Love ya,
GG

Anonymous said...

I love you Anne. No matter how far or what time.. I will be there if you need me. just keep in mind I live in Chicago, so give me at least an hour to get there. (k/d) You are in my prayers every night. I'm trying to make a visit to Cloud soon, so lets make time to get together.

Luv Ya Girl,

Gina G