Bimbys Battle Link
Here I copied n pasted:
What can I say about my Life with Lupus? Well for one, it was shorter than I had expected. You see, I lost my life to this dreadful disease on May 20th, 2009. I was 20 years old, and this is my story.
I was diagnosed at age 15, when my face became covered with this bright red butterfly looking rash. The stares I got from some people made me feel like I was from outer space. My mom took me to see a dermatologist who suggested I might have lupus. I was thankful for both his diagnosis and his good sense to send me to a specialist who knew more about lupus. I was sent to The University of Michigan Hospital where I received high doses of steroids. The weight I gained from the steroids was something I really didn’t care for. But I figured, if this helps me from getting that embarrassing looking rash again, I‘ll do it.
By the time I had turned 17, I had developed pain in my hips and a funny limp that would soon become known as “The Bimby Walk”. Humor is the one thing that kept me going throughout my battle with lupus and it’s something my friends and family had plenty of. During my second visit to the Orthopedic Specialist, I found out that the high doses of steroids I received had destroyed both my hips and this doctor had no problem telling me that hip replacements were inevitable. This specialist also told my mom that lupus patients don’t usually have a long life expectancy. (Gasp!) “What? Did he just say I was going to die?” Well, that’s what I thought I heard. He is crazy, I thought to myself. OK...he ended up being right in my case but he was way off base with his outlook on lupus patients in general. And besides....even if that statement was accurate (which it isn’t)...Did he really have to say it out loud in front of 17 yr old patient? That’s when I decided two things....to become a doctor myself....and I also decided that if I wanted to prove this guy wrong, I was going to have to fight this thing called lupus.
Finishing high school was a battle in itself. I had missed numerous days of school my senior year. I enjoyed school but when you have two bad hips and you ache so bad you can’t get out of bed, what’s a girl to do? The thought of my aching body sitting through 6 hours of class on a hard chair just didn’t appeal to me. So after numerous visits to the vice principal’s office, mom and dad convinced them to let me be home schooled for the rest of the year. Yea…no more getting up early for me! That ended up not being the case and I still had to get up and do what was necessary so I could graduate but at least I got to do it in my pajamas and a sofa that cushioned some of the pain. The home teacher I had was very understanding and ended up becoming a dear friend to me. She helped me graduate on time with the rest of my class.
I started my pre-med classes at Western Michigan University, where I was living with my boyfriend Justen and my sister Taylor who was also going to school there. I was officially on my own….life was going to be good now. I now have control over my future… aside from the lupus dictating what, when, and where I could go… I was in control. I took my medications faithfully (OK almost faithfully) and I went to all my doctors visits. But some days my body still felt like someone took a sledgehammer to it while I was sleeping. I had a few good days in there as well, where I could actually “Bimby Walk” to get some shopping done or party with the girls. So basically, I was living a normal life for someone with lupus. Well as normal as it gets anyways. I was quite fortunate to have a wonderful boyfriend and family who was very supportive and understood my bad days or “flares” as we like to call them in the Lupus World.
An absolute MUST for a lupus patient is a solid support group. I really can’t tell you how important that is. Without it…it makes you feel like nobody understands the pain and difficulties that we so commonly deal with.
It wasn’t until my 3rd year in college that lupus and I really started throwing punches at each other. I threw what I thought was a pretty good uppercut by taking my meds and seeing my rheumatologist faithfully. And just when I thought lupus was going down on the canvas, it threw a couple of punches right on my kidneys. I felt its mighty power from these punches this time and was taken down for the standing 8 count. Lupus had invaded my kidneys and I was now going to need chemotherapy. So I did what every woman with lupus does…I put my Big Girl Panties on and I dealt with it. I decided to move back home for the summer to be able to deal with all my doctors’ appointments and treatments I had. Besides, there’s no better care than what your Momma can give you.
The Domino effect was now in progress, the chemo triggered pneumonia, the pneumonia gave me a blood infection called Asepsis and Asepsis gave me a week’s stay at the Mercy Hospital in Port Huron. I was transferred from Lapeer Hospital to Mercy via ambulance. I always wondered what it was like to ride in one of those things, “Can you turn on the lights and siren?” I would ask the driver…he obliged and said “anything for you princess”,so off I went. If you ever wondered what it was like to ride in an ambulance, imagine having severe back pain and riding your 10 speed bike over a washboard dirt road. Yeah, kind of a rough ride. If the EMS guys and the nurses at Lapeer Hospital weren’t so nice I would have thought I got a raw deal.
My week spent at the hospital involved having a tube down my throat most of the time. Apparently my lungs were now filled with fluid which caused me to not breathe on my own very well. I was really scared when they told me what they needed to do and I immediately started crying. My dad asked me what I was crying about and I asked “what if I die?” With the tears starting to well in my dad’s eyes, he looked at me and said “Timber, what do you think will happen to you if you do die?” Ok, it wasn’t the most reassuring thing a dad can say when I thought I was going to die but at that moment, I told him what I truly believed. I said “I go to Heaven “and he told me “then there is nothing to worry about is there?” At that point, I realized there was nothing to be scared of. They put me on a ventilator and everything went alright. I was released after a long week’s stay and gained what seemed like 30 lbs from all the fluid and steroids they pumped into me. Compared to the pain I was in before I went in, I was feeling GREAT. I could deal with a little weight gain.
After I was released I had a new outlook on life and was ready to get back in the ring to battle lupus once again. A couple days had passed and since I was feeling so good, I decided to make the most of it. I made sure to visit some friends I hadn’t seen in a long time, and spent some quality time with my boyfriend and family members. I even told my sister that I wanted to have a “Celebration of Life Party”. Yep, I was feeling good about my new life and my new outlook.
My “Celebration of Life Party” came a week later on May 23rd, the day of my funeral. Lupus had delivered its final blow. A “Sucker Punch”. It was now official: Lupus does not fight fair.
Justen had taken me to Mercy Hospital that morning because I could not stop coughing. It was there that morning when I went to be with the Lord. It’s ironic that I was at Mercy Hospital when I passed because I feel the Lord really did show his mercy on me. Let’s face it: my future was not looking that stellar with hip replacements, more chemo, kidney replacement and only God knows what else.
If I had only one wish, I would wish that a cure be given for the 1.5 million others who live with lupus daily. Those are the real heroes in life.
I may have lost that battle with lupus but I won the war of life! And for me, I am ok with that. I was blessed with so many wonderful friends and family. As I look down and see them gathered at my Memorial Walk for Lupus, I now know my purpose.