Friday, March 25, 2011

Sick once again

     Hi everyone! Guess what..... I'm sick once again. I was so hopeful that I could maybe, just maybe, get through a whole week of school. Ummm.... ya that didn't happen! This is how it goes, one week I have a great week, I feel great and I think the next week is going to be even better, but then I get sick and I can't go to school for even three days! It stinks. My goal though is to get through at least a whole week of school in this quarter, let's cross our fingers. Hey, I'm hopeful and I believe I can do it!

     On top of being sick, I've had a lot on my mind. It's just been really hard for me to know they(the doctors) haven't diagnosed me with something, and we're still playing the waiting game. People have asked me questions, like "so what did the doctors find out?" I haven't really been able to tell them because we haven't found out any answers yet, all I've been trying to tell them is that we're waiting on labs and test results to come back. That is really what's happening at this point and no one is able to really understand that.(except for my family, of course!) I don't really know how to put what I just said into better words. It has just been really, really hard on me, and I can't get over the fact that the doctors haven't diagnosed me with anything, so it's like we're starting from step 1 all over again.

Saturday, March 19, 2011

A bad day yet still hopeful

It feels like ages since I have written on my blog. Just to keep all of you updated, I arrived home from Cincinnati last night. I`m leaving very unsettled about the whole trip. It`s been very difficult for me to take in such a great deal of information in such a short amount of time. I`m leaving Ohio with no answers instead of more answers. That's the part that is really weighing on me. I was so hopeful in finding more things out. Although one thing is for sure, I don`t have mds. That is one thing I am more than grateful for.
We got a call from my Immunologist in Arizona. He wants me to try the IV form of IVIG. This is something that has been on my mind for a while. My Immunologist said that people can have different reactions to different things, so instead of doing the at home treatments, I would do The IV form of the Vivaglobin or Hizentra.  That is what he wants me to try to see if it has a different effect on me. Or in other words make me feel better. This is a feeling that both me and my mom have been feeling, to try this form of Vivaglobin. One thing I did learn from this trip is that I have to follow my heart and listen to the feelings I`m feeling.
Even though things didn't turn out how they planned, I am still very, very faithful and hopeful that something will show up in at least my bloodwork, or that later on the doctors will be able to finally be able to diagnose me with something then be able to treat it. I am prepared for ANYTHING that shows up, as long as it's an answer I'll be beyond happy!

Tuesday, March 15, 2011

First Day!

     Day one of testing and being at the hospital is OVER! Everything was great! I absolutly love my doctors and my team! I found out some very good and reasuring news today, I have no MDS! Of course thre is something definatly wrong with my bone marrow, its not MDS and i'm very grateful for that.

     Guess what, I beat my personal record on the number of viles of blood they had to take. It was 12 viles but today I got 14 viles1 Then tomarro i'm going to have 17 viles of blood drawn! Whooooo, another new record! Haha!

Monday, March 14, 2011

In Cincinnati!

     Hey everyone! I arrived in Cincinnati, Ohio, and it has already been a blast! You know me, I love my vacations! Its not really a vacation though, it's a visit to Cincinatti Children's! Haha! But hey, i'm game to find out answers! As long as I get better, everything i'm going through is worth it!
     So, tomorrow i'm going to Dr. Harris, the Hemoc doctor at the hospital. Then on Wednesday, i'm going to the Immunologist, Dr. Kumar! Although i'm sort of nervous, i'm super excited, i'm ready to find out answers to my health mysteries!

     As soon as we arrived at the Columbus airport we got a rental car and headed two hours to Cincinnati. The drive was amazing, beautiful scenery and houses, and we even saw a bunch of deer! It was absolutly AMAZZZZING! We finnaly arrived at the hotel after a long day of traveling. Then, we went to the mall, which is right by our hotel may I add, and just looked around. After that we went to the Cheesecake Factory. MMMMMM! Yummy! After we came back and are very tired, that is why i'm leaving right now from my computor! bye!

Tuesday, March 8, 2011

my doctor visit

     So, I went to my Hemoc doctor today, because I wasn't feeling well once again. They ran a bunch of labs on me and everything, once again came up normal. Every time the doctors take my counts, they all come up normal, even when i'm sick. It's very frustrating.
     The doctors are even confused. My Immunelagist thinks that my bone marrow is my problem, but then my Hemoc doctor thinks it's my CVID (Common Variable Immune Deficiency) that's effecting my bone marrow, so both are really confused. Well, I guess I just need to keep pluging through! I just need to keep the faith and keep on climbing!.....One of my favorite songs is " The Climb" by Miley Cyrus. Whenever I hear it it just remindes me that i'm ok, and that I just need to keep climbing. I have a really good friend named Carolyn (Ceci) Christenson, she is dealing with a lot of health problems but is very strong, she always reminds me of this song, and to keep what it's moral is in my head. I am very grateful for her example to me and for her strong faith.

  These are my blood counts today:
WBC: 3.7
PBC: 3.28
Hemaglobin: 10.8
Hematocrit: 31.7
MCV: 97
MCH: 32.9
MCHC: 34.1
RDW 14.0
Platelets: 280
MPV: 11.1

    I'm heading to Cincinnati in.....6 days! Whooooo! I hope that we can actually find answers! I would really feel relieved, because then we can know what we're dealing with, and then treat it!

Monday, March 7, 2011

Not feeling well today

     Like every day, I once again don't feel good! It sucks!.....My head is killing me, and i'm really dizzy! I'm sick of being sick! I just want to find out things! Tomarro, i'm going in for more lab tests, and hopefully get some answers. My doctors don't know what's going on with me......In December, I got a bone marrow biopsy. They all thought it was going to go well, but they found some abnormalities. That is my life story, we never know whats going on. Whenever we think something is going to turn out right, it doesn't!
     Even though I hate going to the doctor, i'm at least grateful that someone is so willing to help me! I never realized before that all they were trying to do was figure things out and just help me! I always thought they were trying to hurt me...hahahaha! I thought that though for a good reason though... they always sent me for labs, needle pokes, treatments, ect. All I know though is that they sent me to those things, because they cared about me and wanted to help me.

     On March 14,2011 I'm going to go to Cincinatti Children's to find more things out. We don't know exactly what I have, but we know it's not just nothing! I'm kind of excited, I get to go on a trip! Although I am going for more tests, a trip is a trip, and i'm happy!