This is a compilation of some of my memories and experiences that happened during my teenage years. Start at the begginning of this blog to hear the beginning of my story.

The most recent posts will now be my experiences with Lupus as an adult and mother.

Friday, January 30, 2009

The Diagnosis

In my mind I'm always in the same room at Dr. Ippilittos office, in Twin Falls. I don't know if that is so or my mind just places me there. All my blood scores had been sent back and forth to the U of U, and my doc had been working with Dr _____..... it just left me. I'll remember his name later. Ippilitto had concluded with him that it was not Juvenile RA, but probably Lupus. I was going to go to SL- Primary Children's Hospital to receive the official diagnosis and protocol. When he told me that, he also mentioned how serious this was. I know my mom was crying. but I didn't know how serious it was, I just knew it was serious.
I think the night before the stake President and my father gave me a blessing. I felt overwhelming calm. Later in life my Seminary teacher asked me if I ever asked why? Why me? and do the pity party thing. In so many times and experiences the Savior was right there by my side almost- right there in the room holding my hand, hugging me. I could feel his warmth although my body was freezing from the constant flow of fluids out of my body. The only why I ask is I know that I'm going through this to make me a stronger person for something...but what? What is going to happen in my life where these experiences will help me. From that time of a stake President's blessing till now- I have a great testimony of our Savior's power.
Driving down to SL, I remember having the feeling that I knew it was Lupus. Why else would we have to go all the way down there. They wouldn't tell us it wasn't then send us home. I was kind of excited, and scared. More excited about the attention I would be getting than scared for the future. Little did I understand how sick I really was though. If it had been discribed to me in a way that I understood how sick I was, and I understood that- I would have been scared silly. Not excited in the least.
We walked into the office. My mom checked in, filled out the paper work. It office was white- sterile feeling although- there are ABC's painted all over, kids books and a fish aquarium. Isn't it funny how pediatric offices are filled with things for kids ages 1-10, although they have patients passed that.
I remember so many details about this event like: I walked a back, turned right, was weighed, measured. Second room on the left. Where we sat and waited. I remember I was 125 lbs and around five feet eight. I felt fat. can you belive that? I was only in 8th grade and feeling fat. I thought my thighs were huge. Now that I look back and understand weight a little better I'm ashamed! I had done my hair in sponge curlers the night before so it was super curly and up in a pony/bun thing. I looked cute- or so I thought. I had on a white tee shirt with a yellow-orange-red striped tanktop over. the doc came in and his assistant- who was really a doctor too they were both my specialists. I liked her- she had kind eyes, a pretty face. But she was from another country like Scandinavia, so I had a hard time understanding her sometimes. From here it is all blury. They told me the diagnosis, they said that my scores where the highest (aka worst) that they had ever seen. I felt proud, like it was something to brag about. I was pretty much on my death bed. They said they needed to do a biopsy of my kidneys. My kidneys looked like sponges from the ocean. Just how big were those holes? the biopsy would tell us. I had so much blood and protien in my urine it was scary. My kidneys weren't really functioning. And then to make my kidneys better I was going to have to do Chemo... WHAT chemo. would my hair fall out? Probably, it depends from patient to patient. How long? We will start with every month for 18 months, then every three months for a year, (this of course was just protocol, if my body did what it was suppose to then that is wouild happen. we realized later, how UNcooperative my body was so everything was not pretty) Medications we will start right now will be predisone (and others...). ok what does that do. It's not pretty. Acne, rashes, it will give you cravings like you never imagined. And will make you gain weight like crazy. So try to eat healthy and aviod fatty foods. It also starts out by depositing water all over your body. mainly in your face, many people call it a MOONFACE.(seriously?I gotta see a picture of this) It also seems to heavily deposit on your shoulders and around your waste. We will see how your body does. we will start you at a high dose and slow taper it off. If you cooperate then you will be able to go off it fast, if your body doesnt then you may be on this medicine for a while. After you are on it though- the water deposits turn to fat deposits and then the weight it harder to loose. So we are in hopes that you will not be on it for a long time. Me too. Common, I'm in junior high! Crushes flying everywhere. There went my future of dating.
We talked about many things- the disease, the organs it, liver, kidneys (were the worst), blood (as we soon come to find out), heart, name it.Medications, Porceedures all kind of things I didn't understand. I was sick. and scared.
I think we went to my mom's aunts funeral that weekend also, becuase I remember I was just beginning the humungous dose of prednisone, sitting in the back of our blue and white bus(really just a van....but big) thinking, while eating strawberry twizzlers, that I should only have a couple of them. But it hasn't kicked in yet. you should practice restraint right, who cares. I love these things.

The Feelings

Not all the syptoms are really clear to me. It was during 8th grade track. I was running the 400, the triple jump, and the high jump. I think I was trying to time for the 200 too. Everyday my body would ache. Just the sign of your body being worked to hard, out of shape, right? For me I felt like I had twisted an ankle or hit my elbow REALLY hard on a desk or something. I was dumbfounded, especially when the very next day it would be a whole different joint. I started complaining a lot, and I could tell it was starting to get on my friends nerves. I recall walking in the middle of Robert Start Jr. High's field with Kendra (who I adored..she was always very popular) and a few other friends limping because my right angle killed, but the day before, my right ankle had hurt. I had said something and immediatly thought I have go to stop complaining. I'm hurting all over, and it is making me slow and a terrible runner. But these guys think I'm just complaining because I can't own up to being a terrible player. We had another friend who did that same thing. She complained about this and that- making exuses as to why she didn't run as fast as everyone else or had a bad day. I heard her being mocked behind her back and I knew this was probably starting about me. That really hurt. My parents and coaches figured I was going through growth spurts and that is why my joints were having problems.
I never finished track.
On one particular night I was trying to finish my "ME" book. I named mine "MICH" me in german. A compilation of stories we write about ourselves and experiences and put it in a big binder. Last year (2008) I was home and noticed my little brother doing his.haha. oh the joys of jr. high. SO, I think I was just waiting for one of my parents to proof read a paper for this book. It was almost done. I was in so much pain. I just laid on the ground sobbing, crying so hard and begging my parents to take me to the dr. I felt that it wasn't just growing pains. At that point I think they realized that I wasnt just "complaining" either. Something was wrong.
My joints got red and swollen. I was seeing the dr a lot and my scores were outrageous. When we got my tests back from Dr. Ippilito I remember him saying that my Antigen levels were not only the highest he had see but also the specialist in Utah he had been conversing with. Trying to discover what on Earth was wrong with me.
At first they diagnosed me with Juvenille RA. That scared me. I didn't want my joints all out of sorts at such a young age.

I rode the bus to school everyday. I had the pleasure of riding with the Chandlers...Amy Jo, another person I idolized...well still do :) one time someone bumped into me on the bus and it shot pain everywhere. From my elbows and wrists up to my neck, it felt like I had just been crunched by a baseball bat. After cringing I looked over and Amy, who was sitting across from me had a "oh I'm so sorry for you"look on her face. I was so embarassed, but at the same time I felt a quiet satisfaction- because someone had witnessed me in pain when I didn't want them to see it, when it wasn't be voicing my aches.

My Lupus Story

For a long time now I have felt the need to write down my experiences. So I'm starting here. I have had many sad experiences and a lot of miracles too. Little impressions and big stories. Every now and then a small memory will come to me, and I need a place like this to record it so that I don't forget it.