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
Monday, February 6, 2012
An inspiration...for me
I woke up today with a sense of purpose...and no fuzzy brain. I think I am learning to live with the pain that comes with this Disease. All of the other Adults have issues with constant, unrelenting, deep pain as well as fatigue. I have that, but combine it with Diabetes, Chron's, and anxiety attacks from PTSD, most days I wake up and just groan.
I took care of phone, E-Mail, then bills and checking the mail. I packed the Jewelry Boxes, along with a couple other little surprises for Melissa, creator of "Art For Molly" Auction. And I am soooo excited!!! When I heard about the Auction, I went to the Facebook page, and it just felt right. So, I messaged Melissa to find out more. She led me to Molly's Page..and I had a hard time writing through the tears. Molly is an Angel now, and she is changing lives everyday. 15 is too young to become an Angel.
I remember 15. I was in Tennesee for my birthday, then after summer vacation, started High School. That was a big thing. In Virginia, in the county I lived in, we went to Jr High from 7th-9th Grade. The Football Games, Dances, Going to The Mall, and making pretty decent money Babysitting. It was so awesome to be able to do all of that. Then, I was ran over my a guy from out neighborhood. And it is not my Typing...he was riding a BICYCLE.
Yeah, well...the young ARMY Dude in the ER hard a hard time digesting that also....I get it, I really do. But when he grabbed my foot and pulled to "Help me out" of the backseat of my Mom's car, and the bone popped out of my leg...he deserved the long string of curse words that followed. Poor Mom, she was wishing for a bar of soap.
Then, I spent most of my school year in a cast. But, you can't stop the growing up, even with a broken leg. I was becoming a woman. My leg however, was not healing. We were sent to Walter Reed Army Hospital. They took me out of my cast, "formed" a custom brace to try to stimulate the bone growth by allowing more pressure to be put on the bones. It did not work, and at the next appt., the Doctor said he was going to amputate my Rt Leg from the knee down. So. my Mom went to see The Surgeon General's Office....see where i get my temper and my rants...lmao. She also contacted the Red Cross to have my Father "brought home" from deployment in Germany. And I had a bone graft from my Rt Hip to my Rt leg. It took, but the stitches broke open..8-10 inches..all the way to the bone and ulcerated. They same Army Hospital, where I was originally treated opened my cast, the Doctor said...we have to clean it. Yes, he proceeded to hollar for "help holding her down" Mom tried to help, but caught a Rt hook in the gut. They stuck a huge iodine gauze swab on a stick down to the bone and scrubbed, over and over. I think I passed out.
When I was wearing the brace, I was able to get my learner's permit. I was feeling so "Grown Up" and I cannot imagine knowing that I had a Disease like this....At 15.
Molly, your Memory lives on. I did not "know you or meet you" But reading your Journal, watching the video of the Musical, and seeing how much you had humbles me.
I took care of phone, E-Mail, then bills and checking the mail. I packed the Jewelry Boxes, along with a couple other little surprises for Melissa, creator of "Art For Molly" Auction. And I am soooo excited!!! When I heard about the Auction, I went to the Facebook page, and it just felt right. So, I messaged Melissa to find out more. She led me to Molly's Page..and I had a hard time writing through the tears. Molly is an Angel now, and she is changing lives everyday. 15 is too young to become an Angel.
I remember 15. I was in Tennesee for my birthday, then after summer vacation, started High School. That was a big thing. In Virginia, in the county I lived in, we went to Jr High from 7th-9th Grade. The Football Games, Dances, Going to The Mall, and making pretty decent money Babysitting. It was so awesome to be able to do all of that. Then, I was ran over my a guy from out neighborhood. And it is not my Typing...he was riding a BICYCLE.
Yeah, well...the young ARMY Dude in the ER hard a hard time digesting that also....I get it, I really do. But when he grabbed my foot and pulled to "Help me out" of the backseat of my Mom's car, and the bone popped out of my leg...he deserved the long string of curse words that followed. Poor Mom, she was wishing for a bar of soap.
Then, I spent most of my school year in a cast. But, you can't stop the growing up, even with a broken leg. I was becoming a woman. My leg however, was not healing. We were sent to Walter Reed Army Hospital. They took me out of my cast, "formed" a custom brace to try to stimulate the bone growth by allowing more pressure to be put on the bones. It did not work, and at the next appt., the Doctor said he was going to amputate my Rt Leg from the knee down. So. my Mom went to see The Surgeon General's Office....see where i get my temper and my rants...lmao. She also contacted the Red Cross to have my Father "brought home" from deployment in Germany. And I had a bone graft from my Rt Hip to my Rt leg. It took, but the stitches broke open..8-10 inches..all the way to the bone and ulcerated. They same Army Hospital, where I was originally treated opened my cast, the Doctor said...we have to clean it. Yes, he proceeded to hollar for "help holding her down" Mom tried to help, but caught a Rt hook in the gut. They stuck a huge iodine gauze swab on a stick down to the bone and scrubbed, over and over. I think I passed out.
When I was wearing the brace, I was able to get my learner's permit. I was feeling so "Grown Up" and I cannot imagine knowing that I had a Disease like this....At 15.
Molly, your Memory lives on. I did not "know you or meet you" But reading your Journal, watching the video of the Musical, and seeing how much you had humbles me.
Sunday, February 5, 2012
Like "The Red Caboose", I think I can....
I try, and I try, but I must confess....I am not "getting" crocheting. I have tried the You Tube Videos, the most simple, basic, and instructions that are meant for children. And some of it resembles the pictures, but I just don't get the Double Chain/Stitch. I also have a bag of Granny Squares done by my Mother-in-Law.
I really want to finish the afghan for one of my Nephews. It would mean so much to him, especially since she is no longer with us, and he just went away to college. It is hard to picture him grown, and in his first place away from his parents.
I have the same problem with typing or keyboarding. I took it in High School, and 2 times in college, From my fingers to my brain, there is a ...lol..."Missing Link". I fear it is so.I can usually find a way to figure it out. I have almost 12 years of production experience. Many of my positions required fast paced, repetitive hand movements, so I know once I figure it out, it will be easy.
Well, Bless my Hubby. One of his favorite customers came in today and had yarn and needles in her basket. He mentioned that I was trying very hard to learn by teaching myself. She gave him her phone number, they have a group that meet at her church on Mondays. She also said I could come to her her house also. And that it great. I just need to watch some one so I can mimic the hand movements and the way to turn the yarn, and so on....
I am so easy to please
I really want to finish the afghan for one of my Nephews. It would mean so much to him, especially since she is no longer with us, and he just went away to college. It is hard to picture him grown, and in his first place away from his parents.
I have the same problem with typing or keyboarding. I took it in High School, and 2 times in college, From my fingers to my brain, there is a ...lol..."Missing Link". I fear it is so.I can usually find a way to figure it out. I have almost 12 years of production experience. Many of my positions required fast paced, repetitive hand movements, so I know once I figure it out, it will be easy.
Well, Bless my Hubby. One of his favorite customers came in today and had yarn and needles in her basket. He mentioned that I was trying very hard to learn by teaching myself. She gave him her phone number, they have a group that meet at her church on Mondays. She also said I could come to her her house also. And that it great. I just need to watch some one so I can mimic the hand movements and the way to turn the yarn, and so on....
I am so easy to please
Friday, February 3, 2012
Thursday, February 2, 2012
My Son Called...So I also heard from John Hopkin's Hospital
You know that feeling, where you are so excited you resemble a yappy little Poodle. I have the feeling right now. I am going to try not to let my ADHD kick in, and stay on one subject at a time...right...
I heard my Son's Voice on the phone last night and was squealing, trying hard not to bawl like a baby. He had been out of "The Hole" for 4 days, but still not allowed to call me. I was so livid, I started posting pictures never before seen during his burn injury, and posting the injustice, that would refuse to give him the "Proper Medical Care" for MRSA. They were risking the health and well being of not only my Son, but every other inmate, and their own health as well. Now that I have heard from him, it has helped my anxiety attacks. But I am going to keep writing letter to raise awareness of Prison Conditions.
For the record...I do not expect anyone to treat Jr different just he is; "The Burned Boy From TV" He made a mistake, he has almost a year left on his sentence. But, given a very well documented case of MRSA, they should've transported him to The Medical College of Virginia, where they have a locked down unit. I never yelled, cursed, but I explained over and over for almost a week that he had been processed in to Powhatan Medical Unit at Powhatan Correctional Center. He had required ER surgery to remove a monster "pocket of yellowish looking infection", and the diagnosis was confirmed it was MRSA.
Seven months later, it should never have required my "throwing a fit", calling Sen. Warner's Office, Gov's Office, the Press, etc.
Now, the update for me. I received an E-Mail from The Pediatric Oncologist at John Hopkin's University that also will treat Adults. It took me almost 6 months to find a Doctor, and get in to have a consultation with him. But after reviewing my PET Scan, he and his team want to see the results of the Pulmonary Function Test I had done yesterday. They believe that I may just qualify for the Clinical Study.
Ahhh, what a Day...it is never boring being me..lol
I heard my Son's Voice on the phone last night and was squealing, trying hard not to bawl like a baby. He had been out of "The Hole" for 4 days, but still not allowed to call me. I was so livid, I started posting pictures never before seen during his burn injury, and posting the injustice, that would refuse to give him the "Proper Medical Care" for MRSA. They were risking the health and well being of not only my Son, but every other inmate, and their own health as well. Now that I have heard from him, it has helped my anxiety attacks. But I am going to keep writing letter to raise awareness of Prison Conditions.
For the record...I do not expect anyone to treat Jr different just he is; "The Burned Boy From TV" He made a mistake, he has almost a year left on his sentence. But, given a very well documented case of MRSA, they should've transported him to The Medical College of Virginia, where they have a locked down unit. I never yelled, cursed, but I explained over and over for almost a week that he had been processed in to Powhatan Medical Unit at Powhatan Correctional Center. He had required ER surgery to remove a monster "pocket of yellowish looking infection", and the diagnosis was confirmed it was MRSA.
Seven months later, it should never have required my "throwing a fit", calling Sen. Warner's Office, Gov's Office, the Press, etc.
Now, the update for me. I received an E-Mail from The Pediatric Oncologist at John Hopkin's University that also will treat Adults. It took me almost 6 months to find a Doctor, and get in to have a consultation with him. But after reviewing my PET Scan, he and his team want to see the results of the Pulmonary Function Test I had done yesterday. They believe that I may just qualify for the Clinical Study.
Ahhh, what a Day...it is never boring being me..lol
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