Where to begin. I have been very down in Spirit. Tired, and feeling like crap with the infamous Histio...Then tired of feeling tired. The goal of controlling my blood sugar levels is coming along nicely, so my fighting Spirit is back in full force.
I am more determined than ever to kick this crap in the butt!! One thing that is helping to keep me in focus is the fact that the more Adults that can participate in The Clinical Study the better. It is having a profound affect on two of the ladies that have been on it for a couple months now. One is actually back working at a new job..you go Whitney!!
That will result in allowing babies and children to take this medication also. That is the ultimate goal for me personally. I have the disease, and of course I want selfish and I want to live longer, but I really hate reading on Facebook that another one of the children has passed. I don't want anymore Babies to die because this Disease is so rare there has never been a lot of reasearch due to lack of funding and awareness.
In this day and age, we have the capability of networking and sharing information with millions of people globally. And that is my/our goal. There are some very talented, gifted, and very determined people working continuously to promote our cause.
Liam's Lighthouse Foundation, The Histiocytosis Assoc. are a few that are growing as each day goes by. Together, we are posting on our walls, in our blogs, and on any website we can find to help these organizations. So, I am giving myself a Pep Talk to stop feeling sorry for myself and get motivated!! Go Sue!! LOL!!
Saturday, March 17, 2012
Tuesday, March 6, 2012
Could not start the Clinical Study
Well, there is a such thing of being too sick to participate in a Clinical Study. I went to Hopkin's in Baltimore, and did not qualify based on my Blood glucose levels. My A1C count was 7.3, and it has to be under 7. But, we are not giving up. I am following a very, very strict diabetic diet.
But, it is also more complicated that that. I initially sought medical treatment last year in the ER. It was 3/21/11. My entire GI system seemed to have just "shut down" I have a history of Chron's Disease, these symptoms are the total opposite of a Chron's "Flare Up". And then the nodules were discovered in the lower lobes that showed up in the abdominal CT. That has been the primary focus..my lungs.
Mind you, during all of the tests, both lung biopsies (one was open lung), I have dealing with horrible and nausea and pain way up high in my abdomen. So, a year later..still no treatment and all of the Dr's are stumpted as to what is going on with my GI.. If we can not get my sugar level down, and figure out what is going on, I will have to do the "normal protocol"
I really want to do the Trial, because this is so rare that there is not many of the Adult's newly diagnosed, and never received any kind of treatment for the Histiocytosis. It is critical for the babies and children, because this drug is showing progress, and it could be the medicine that is a huge ground breaking treatment for the kids. And as Adults, we would also benefit. It is very hard for Adults like me to get treatment because most Drs have never heard of this condition.
So, we pray, and wait.
But, it is also more complicated that that. I initially sought medical treatment last year in the ER. It was 3/21/11. My entire GI system seemed to have just "shut down" I have a history of Chron's Disease, these symptoms are the total opposite of a Chron's "Flare Up". And then the nodules were discovered in the lower lobes that showed up in the abdominal CT. That has been the primary focus..my lungs.
Mind you, during all of the tests, both lung biopsies (one was open lung), I have dealing with horrible and nausea and pain way up high in my abdomen. So, a year later..still no treatment and all of the Dr's are stumpted as to what is going on with my GI.. If we can not get my sugar level down, and figure out what is going on, I will have to do the "normal protocol"
I really want to do the Trial, because this is so rare that there is not many of the Adult's newly diagnosed, and never received any kind of treatment for the Histiocytosis. It is critical for the babies and children, because this drug is showing progress, and it could be the medicine that is a huge ground breaking treatment for the kids. And as Adults, we would also benefit. It is very hard for Adults like me to get treatment because most Drs have never heard of this condition.
So, we pray, and wait.
Saturday, February 25, 2012
Sunday, February 19, 2012
Pretty, fresh snow
It was so peaceful watching it snow.My visiting teacher came to visit me, and gave me a Healing Blessing. It left me feeling a profound sense of peace. Some my inner turmoil, he mentioned while he was praying. I felt The Lord is carrying me through all this Medical stuff. And it helps.
Thursday, February 16, 2012
lots of medical tests
This past week I have been to numerous appointments with my "regular Drs" and have been having a lot of tests ran to prepare for a clinical trial that I have accepted to participate in, I will be treated at John Hopkins University Hospital. I have had to advocate for myself to receive this treatment. It is so rare, it has been almost a year to get everything coordinated so I would have a chance.
I am excited to be a part of this trial. I have always believed in research for rare conditions, but I never dreamed I would end up with such a crazy, unpredictable Cancer-Like condition.
I am excited to be a part of this trial. I have always believed in research for rare conditions, but I never dreamed I would end up with such a crazy, unpredictable Cancer-Like condition.
Thursday, February 9, 2012
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