My last blog came from how I had been feeling lately. Sometime I wonder how people can be so cruel and mean. It hurts my heart to see people being so mean to each other but I think I covered that subject pretty well in my last blog. This blog Im going to talk about my current struggles.
So when I was diagnosed with JDM the plan was that I would be in remission within 4 years. Hopefully. But so far that hasn't happened. The treatment plan was to begin with 60mg of prednisone, along with many other meds that included a 1cc shot of chemo a week and a treatment that I got every 4 weeks called IVIG that I was only supposed to get 8 times. Everything was going great until the first time we tried to push the ivig back to 6 weeks on my 6th treatment. When I hit four weeks I could feel my body getting weaker. The fifth week I got very sick and started throwing up. I knew I was not going to be able to make it to the six weeks. I tried my best but my mom had to bring me to Children's Hospital at 1 in the morning. It was weird though. All my levels had stayed pretty much the same.
Doctor Brown told me that we would go back to 4 weeks and that if I felt like I could keep going and make it to six weeks that we could change the appointment. Well I tried but my body just was not doing what I need it to do.I have always pushed myself so hard to get stronger and to get better but my body just was not ready I guess. Well when I went in for my 12th IVIG Doc. Brown suggested that we talk with the Geneticist Doctor Marble once again about the VL-CAD stuff that he had talked about when I was first diagnosed and she also said that she would send my case info to a Doctor at George Washington University who specialized in JDM.
And that is what Im dealing with right now.We met with Doctor Marble who is the best of the best when it comes to genetics. He talked to us in detail about all the different possiabilitys that it could be and some of the stuff I have a hard time even saying! So he took blood. When the results came back he said that it was very strange because the "profile" was different from a year ago.So he asked us to do a urinalysis and now we are just waiting on the results. And as for the Doctor at GWU she said just to keep her updated. Go figures....
Now I am just waiting. I was supposed to go in for my IVIG on the 2nd but Doctor Brown said she wants me to wait because she needs me to weaker when I come in next time, which is on Valentines Day. She is bringing in a neurologist to look at me and then we will start the IVIG after that. I have had a rough couple of nights. From terrible head aches and leg cramps, to weakness, and passing out the other night I can tell it is going to be a rough couple of days until I go into the hospital. I just know that no matter what I have to keep my chin up. God only gives us what we can handle. With my family, friends, and my loving boyfriend by my side I know that I can make it through anything.
I can only think on the bright side because I am to young and I have to much life left to live to think any other way. Each time I hurt now means that I will just live that much easier when I grow old. So for now all I can do is pray and I ask that each one of you just pray for me when you can. Thank you and God bless.
Love,
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