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
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
Monday, January 30, 2012
We had a nice evening
Tonight will be a short post. I was so happy with the reactions of my Daughter, and Bestest Best Friend Ever. They both enjoyed their cards, small, but well thought out gifts, then we ate homemade lasagna and a variety tray of cheesecake. My daughter said this was one of the best Birthdays ever, and she was very happy to be miserable, fat, and happy. Nah, she is so tiny. But it had been a very long time since I made it, but something was different this time. Maybe the "fresh" mozzarella, I do not know what I did this time, but we were all making those little ummm....aaahhh....ohhhh...mmmnommm noises at the table and the closing of your eyes while you are sighing in pure satisfaction of a blend of just the right flavors.
Tomorrow will be another day to contemplate what course of action I should take concerning my Son. And I want to upload some pictures other than my "Histio Face" Oh, my comfy bed is calling for me............
Tomorrow will be another day to contemplate what course of action I should take concerning my Son. And I want to upload some pictures other than my "Histio Face" Oh, my comfy bed is calling for me............
Sunday, January 29, 2012
Tomorrow I will try another tactic...
Everyday that goes by without hearing from my son is making me more determined not to allow The Virginia State Department of Corrections at Deep Meadow Correctional Center have a chance to treat another inmate like they have treated my son. In 2006, my son was severely burned in a gasoline explosion. In the course of his hospitalization, he went septic from MRSA. He had ran a fever all through the day. His Dad had just flew to Ohio where our son had been transported from Virginia. He was in The Shriner's Hospital and it had been a month since we had been away from home.
The Nurses felt like he was stable enough for my husband to take me to dinner outside of the hospital. When we returned, I thought his whole abdomen looked swollen. As Glenn and I were talking to the Nurse in his ICU room, there was a gurgling noise from his throat. As I glanced down, to my horror, yellow fluid started gushing out of trach, mouth, and nose. I yelled at the Nurse and Glenn to "Roll Him, he'll Drown!!" Glenn and I rolled him to his side. The Nurse hit the "code button" and started an IG tube down his nose and Glenn had the suction tube in his mouth, while I kept him from rolling back on his back.
It happened in a matter of seconds, but it is a vision I will never be able to forget. It was about 8-9pm when it happened. But it was around 1 am or so before Glenn and I left his room. We went to Whitecaslte, because it felt like we had never ate dinner. And we bought a Snack-Attack Pack" box of about 30 mini-cheese burgers for all of the Nurses, and everyone who worked straight through their own dinners.
So, ok....I might be a little overprotective concerning my son. Yeah, I get it. But ya know, I do not expect him to receive any "Special Treatment" just because he was burned before he made a very bad choice. Anyone who REALLY knows me, I mean really, really knows me, can tell you that this next statement is 100% correct: When the hospital called to tell me he was in a horrible accident, and it dawned on me that my husband and I were just talking about "the idiot that led the police on a high speed chase right at the split of I-95 and I-85, just down from us"....I Busted Out Laughing...Really...The Nurse was stunned when I told her "we were talking about the wreck on TV, and my Husband said, Was it a silver van?"
Then I asked if he was bleeding or in any danger of dying. She said, No...and I asked if The Kids were with him..and she said, Yes. I asked if they were ok, if their Mom was there..blah, blah, blah...then, I will never forget her next question..."He wants to know if you will come here"....and I told her to "tell him it would be alot safer for him if I just stayed home." And I really wasn't joking.
The next day, as they signed the release papers from the hospital, he was officially arrested. And I did not answer his call from jail for bail, or money, and I was out of work so I was not going to hire an expensive Attorney.
Glenn, Jr. has served almost 2 years of a 3 1/2 sentence. And while he is an inmate in Prison, he still has the right to Medical Care. He had 6-8 flare-ups of MRSA while at Riverside Regional Jail. It was always the same story..He would get a huge bump, similar to a boil. It would turn into a very large abcess by the time he would get to see a Nurse. And mind you, I consider the source, after a couple days of him calling home..I would call Medical. He even had 2 at one time, 1 in each nostril. Can you imagine how nasty that was when it burst..Yuck!!
Then, he called me in June, I was awaiting my results from my second CT Scan, to see if all of the Bilateral Nodules were lung cancer. He had a massive on his elbow, and one in his abdomen. After more than a week of trying to explain his flare-ups of MRSA, I got fed up and started E-Mailing the top Admin. of Inmate Services and Housing. He made sure that Jr was seen by the Dr. However, while the massive lesion on the elbow was able to "burst", the infection in his abdomen was not of "a cellular make-up" It was a monster pocket of "yellowish fluid".
From one Hospital, he was transferred to another when it became apparent that he would need to be hospitalized for a couple more weeks. From there, he was processed into Powhatan Medical Unit. By then, I had my Open Lung Biopsy....and this crazy diagnosis followed.
So...you ask....what is the point???? Yeah, I am asking that too. WHY did I have to drive up to DMCC on 1/16/12, forgoing my pain medicine, so I could see my son and talk to The Chief Admin. on Duty?? WHY has the Medical Unit REFUSED to discuss my son's condition with me even though he signed a release form, until 1/17/12....when The Nurse Adminis. called me to tell me she had just had my son in her office "To give him a dressing down for being spoiled and letting a pimple turn into a boil" Why did I have to find out later that evening from another inmate's Mother, that they "gave him 5 days in The Hole"?? When I asked if the culture was MRSA...I was told it "showed a SCANT BIT of MRSA"
And I am fed up after talking to an Aide/Admin at The Office of Public Safety at Governor McDonnel's Office on Thurs, 1/26, and providing a lot more details, names and the fact that the Nurse Admin. at DMCC told me that "they did not have any single cells available...so they had to put him in Building M...A DIFFERENT KIND OF ISOLATION"
Yes, mind you...everyone knows not to mess with MAMA...so what is the point in all of this????
The Nurses felt like he was stable enough for my husband to take me to dinner outside of the hospital. When we returned, I thought his whole abdomen looked swollen. As Glenn and I were talking to the Nurse in his ICU room, there was a gurgling noise from his throat. As I glanced down, to my horror, yellow fluid started gushing out of trach, mouth, and nose. I yelled at the Nurse and Glenn to "Roll Him, he'll Drown!!" Glenn and I rolled him to his side. The Nurse hit the "code button" and started an IG tube down his nose and Glenn had the suction tube in his mouth, while I kept him from rolling back on his back.
It happened in a matter of seconds, but it is a vision I will never be able to forget. It was about 8-9pm when it happened. But it was around 1 am or so before Glenn and I left his room. We went to Whitecaslte, because it felt like we had never ate dinner. And we bought a Snack-Attack Pack" box of about 30 mini-cheese burgers for all of the Nurses, and everyone who worked straight through their own dinners.
So, ok....I might be a little overprotective concerning my son. Yeah, I get it. But ya know, I do not expect him to receive any "Special Treatment" just because he was burned before he made a very bad choice. Anyone who REALLY knows me, I mean really, really knows me, can tell you that this next statement is 100% correct: When the hospital called to tell me he was in a horrible accident, and it dawned on me that my husband and I were just talking about "the idiot that led the police on a high speed chase right at the split of I-95 and I-85, just down from us"....I Busted Out Laughing...Really...The Nurse was stunned when I told her "we were talking about the wreck on TV, and my Husband said, Was it a silver van?"
Then I asked if he was bleeding or in any danger of dying. She said, No...and I asked if The Kids were with him..and she said, Yes. I asked if they were ok, if their Mom was there..blah, blah, blah...then, I will never forget her next question..."He wants to know if you will come here"....and I told her to "tell him it would be alot safer for him if I just stayed home." And I really wasn't joking.
The next day, as they signed the release papers from the hospital, he was officially arrested. And I did not answer his call from jail for bail, or money, and I was out of work so I was not going to hire an expensive Attorney.
Glenn, Jr. has served almost 2 years of a 3 1/2 sentence. And while he is an inmate in Prison, he still has the right to Medical Care. He had 6-8 flare-ups of MRSA while at Riverside Regional Jail. It was always the same story..He would get a huge bump, similar to a boil. It would turn into a very large abcess by the time he would get to see a Nurse. And mind you, I consider the source, after a couple days of him calling home..I would call Medical. He even had 2 at one time, 1 in each nostril. Can you imagine how nasty that was when it burst..Yuck!!
Then, he called me in June, I was awaiting my results from my second CT Scan, to see if all of the Bilateral Nodules were lung cancer. He had a massive on his elbow, and one in his abdomen. After more than a week of trying to explain his flare-ups of MRSA, I got fed up and started E-Mailing the top Admin. of Inmate Services and Housing. He made sure that Jr was seen by the Dr. However, while the massive lesion on the elbow was able to "burst", the infection in his abdomen was not of "a cellular make-up" It was a monster pocket of "yellowish fluid".
From one Hospital, he was transferred to another when it became apparent that he would need to be hospitalized for a couple more weeks. From there, he was processed into Powhatan Medical Unit. By then, I had my Open Lung Biopsy....and this crazy diagnosis followed.
So...you ask....what is the point???? Yeah, I am asking that too. WHY did I have to drive up to DMCC on 1/16/12, forgoing my pain medicine, so I could see my son and talk to The Chief Admin. on Duty?? WHY has the Medical Unit REFUSED to discuss my son's condition with me even though he signed a release form, until 1/17/12....when The Nurse Adminis. called me to tell me she had just had my son in her office "To give him a dressing down for being spoiled and letting a pimple turn into a boil" Why did I have to find out later that evening from another inmate's Mother, that they "gave him 5 days in The Hole"?? When I asked if the culture was MRSA...I was told it "showed a SCANT BIT of MRSA"
And I am fed up after talking to an Aide/Admin at The Office of Public Safety at Governor McDonnel's Office on Thurs, 1/26, and providing a lot more details, names and the fact that the Nurse Admin. at DMCC told me that "they did not have any single cells available...so they had to put him in Building M...A DIFFERENT KIND OF ISOLATION"
Yes, mind you...everyone knows not to mess with MAMA...so what is the point in all of this????
Saturday, January 28, 2012
I confess..I have been lazy...
Not really, My Christmas ornaments and decorations are all put away. The main feat is that this year I brought down every Tote, Box, anything I could find that had anything to with Christmas. And it has been organized and labeled. And I love it!! Only 2 cardboard boxes now...in them..very old vintage candles. Some of the candles are rather tall, 10 to 12 inch pillar style. So I am going to find a clear tote for them.
I finished up 2 Jewelry Boxes I am donating to "Art for Molly" a non-profit organization that was started by Molly's Cousin Melissa. Melissa auctions off Art that she creates and that others, like myself, donate. Molly was 15 years old when she lost her battle with a type of Histiocytosis.
I am also fighting Histio. I am still having tests ran to try to figure out the extent of the involvement in my systems. But, so far, it looks like it is only in my lungs.
I finished up 2 Jewelry Boxes I am donating to "Art for Molly" a non-profit organization that was started by Molly's Cousin Melissa. Melissa auctions off Art that she creates and that others, like myself, donate. Molly was 15 years old when she lost her battle with a type of Histiocytosis.
I am also fighting Histio. I am still having tests ran to try to figure out the extent of the involvement in my systems. But, so far, it looks like it is only in my lungs.
Monday, January 23, 2012
It is about..blah
Yes, it is blah for today. Typical for Virginia, January. Gray, cold, and drizzly, perfect for hiding at home. I had an early morning appointment, and left so disgusted, I came home and went back to bed.
I have lived most of my Adult life in pain and stomach issues with Chron's. I always believed it was mind over matter, and life goes on. Only during the rare "flare ups" once or twice a year did I really could not help it but, it would make me sick enough to "put me down".
Since March of 2011, the beginning of my issues with Histiocytosis, I never thought I would have to deal this the extent of pain and lousy symptoms that go along with this condition. It really makes me shudder to realize that this is a rare..Childhood Cancer-Like condition. So, while it is rare in children, it really does affect so many more children than Adults. And I really hate to think of a child going through what I am going through..especially the little babies.
Oh, I am really in a unique position. Having had an infant diagnosed with ultra-rare cancer, then provided daily care for my Mother during the battle she lost, I have had those perspectives. But, now fighting my own battle..I guess I just never realized how much conditions like this really sucked.
I have lived most of my Adult life in pain and stomach issues with Chron's. I always believed it was mind over matter, and life goes on. Only during the rare "flare ups" once or twice a year did I really could not help it but, it would make me sick enough to "put me down".
Since March of 2011, the beginning of my issues with Histiocytosis, I never thought I would have to deal this the extent of pain and lousy symptoms that go along with this condition. It really makes me shudder to realize that this is a rare..Childhood Cancer-Like condition. So, while it is rare in children, it really does affect so many more children than Adults. And I really hate to think of a child going through what I am going through..especially the little babies.
Oh, I am really in a unique position. Having had an infant diagnosed with ultra-rare cancer, then provided daily care for my Mother during the battle she lost, I have had those perspectives. But, now fighting my own battle..I guess I just never realized how much conditions like this really sucked.
Saturday, January 21, 2012
I hate Alzheimer's
Today is a good day for Dad. He is talking up a blue streak. And recalling so many stories. This is a very sporatic thing. We never know what each day will be like. And, we never know for sure how much he knows as far as the present tense. On days like today, he talks alot, but it is the same story, repeated...over and over. I don't mind for the most part. The only time it gets to me is if I am seriously in really bad pain.
Mostly, it hurts to a certain extent. Dad was born and raised in Louisana, ragin' cajan, LOL!! And Oh Lordy, what an incredible cook!! Several vegatables I swore I would never, ever like, I ate here at this home and Wow, nom nom yum yum good. Dad was drafted for WWII, in the Army. One day, in a mess hall, a General overheard my father-in-law (Dad) say "the food isn't fit for dogs!!" The General asked my Dad if he could do better. That is how my Dad turned from an awesome Cajan/Southern Cook to a formally trained Chef. Not only was he a wonderful Chef, he was a born leader. He never asked someone to do something he would not do himself.
At the end of WWII, there were no longer any available for Dad's position in the Army. Dad had already made up his mind the he wanted to be a career military man. So, he re-enlisted with the Air Force. He was assigned to a General, and at several bases, he was able to have Officer's Quarter's so he could be more acsessable to the General. And the first thing he would ask the General would be "make a list of all of the foods you do not like". Then, that is what he would cook.
I have always been a "Caregiver", as the oldest in a dysfunctional home, I was "The Fixer". Or, looking back.."The Bossy One" But as an adult, from the time I was 18, and my infant daughter was diagnosed with a form of Childhood Cancer, Exter-Renal Wilm's Tumor, I have taken care of someone.
To think, if I had not been hit by a neighborhood kid on a bicycle...yes, I did say bicycle...I would've went in the Navy to fly Jets. That was my dream, go to community college for 2 years and enlist. Boy did my life turn out so totally different than I ever expected.
I am who I am, and I am pretty happy knowing who I am inside...but no longer caring so much what others think. The people who love me most, are the ones that matter.
Mostly, it hurts to a certain extent. Dad was born and raised in Louisana, ragin' cajan, LOL!! And Oh Lordy, what an incredible cook!! Several vegatables I swore I would never, ever like, I ate here at this home and Wow, nom nom yum yum good. Dad was drafted for WWII, in the Army. One day, in a mess hall, a General overheard my father-in-law (Dad) say "the food isn't fit for dogs!!" The General asked my Dad if he could do better. That is how my Dad turned from an awesome Cajan/Southern Cook to a formally trained Chef. Not only was he a wonderful Chef, he was a born leader. He never asked someone to do something he would not do himself.
At the end of WWII, there were no longer any available for Dad's position in the Army. Dad had already made up his mind the he wanted to be a career military man. So, he re-enlisted with the Air Force. He was assigned to a General, and at several bases, he was able to have Officer's Quarter's so he could be more acsessable to the General. And the first thing he would ask the General would be "make a list of all of the foods you do not like". Then, that is what he would cook.
I have always been a "Caregiver", as the oldest in a dysfunctional home, I was "The Fixer". Or, looking back.."The Bossy One" But as an adult, from the time I was 18, and my infant daughter was diagnosed with a form of Childhood Cancer, Exter-Renal Wilm's Tumor, I have taken care of someone.
To think, if I had not been hit by a neighborhood kid on a bicycle...yes, I did say bicycle...I would've went in the Navy to fly Jets. That was my dream, go to community college for 2 years and enlist. Boy did my life turn out so totally different than I ever expected.
I am who I am, and I am pretty happy knowing who I am inside...but no longer caring so much what others think. The people who love me most, are the ones that matter.
Friday, January 20, 2012
TGIF...Maybe???
Actually, that does not mean a whole lot to me since I am a caregiver. My work is at home, and I love it. I get so inspired with so many ideas to re-decorate our house. It is awesome.
Since Glenn's parent's bout this house 38yrs ago, there is quite a bit of "stuff" In fact, it was somewhat overwhelming. I know there are boxes way up in the main attic that were never unpacked when they moved. And we have all of the stuff we moved out of our own house 6 years ago. But the closets have been cleaned out, so it is slowly coming along. One major thing I been able to do is go throw all of the Totes with Christmas decorations in them. In the process, find all of the "original" small boxes, and match them back up with the right decorations. It will mean that we will end up with less Totes, and hardly any cardboard boxes. All of the Totes are labeled with the contents on the outside of the Tote.
And..that means next year, all we have to do is look at the Tote to see which ones we want to use. I love organization. Along with everything getting better organized, I am finding quite a bit of vintage stuff. I really love vintage things. I am blending the vintage goodies with things we already have, and it is starting to look pretty good. But, in the future, we have a huge job in front of us.
With Glenn's Dad having Alzheimer's, it is hard to make some of the changes that need to be done. And there is also my pain to factor in. Eventually, the house needs to be repainted inside. The carpet cleaned downstairs. Oak hardwood floors will need to be professionally re-done. I know of several spots that need sanding, so might as well do it all at once.
As much as needs to be done...at least I do not have to duck when I open the closet doors..LOL...Aah, it is the simple things that make me happy.
Since Glenn's parent's bout this house 38yrs ago, there is quite a bit of "stuff" In fact, it was somewhat overwhelming. I know there are boxes way up in the main attic that were never unpacked when they moved. And we have all of the stuff we moved out of our own house 6 years ago. But the closets have been cleaned out, so it is slowly coming along. One major thing I been able to do is go throw all of the Totes with Christmas decorations in them. In the process, find all of the "original" small boxes, and match them back up with the right decorations. It will mean that we will end up with less Totes, and hardly any cardboard boxes. All of the Totes are labeled with the contents on the outside of the Tote.
And..that means next year, all we have to do is look at the Tote to see which ones we want to use. I love organization. Along with everything getting better organized, I am finding quite a bit of vintage stuff. I really love vintage things. I am blending the vintage goodies with things we already have, and it is starting to look pretty good. But, in the future, we have a huge job in front of us.
With Glenn's Dad having Alzheimer's, it is hard to make some of the changes that need to be done. And there is also my pain to factor in. Eventually, the house needs to be repainted inside. The carpet cleaned downstairs. Oak hardwood floors will need to be professionally re-done. I know of several spots that need sanding, so might as well do it all at once.
As much as needs to be done...at least I do not have to duck when I open the closet doors..LOL...Aah, it is the simple things that make me happy.
Wednesday, January 18, 2012
The subject is my son...
Oh that boy had the most beautiful complexion, even just having been born. He was not all red and wrinkled. And his sweet little face would make all of the ladies Oooo and Aaaaa over him. And he was a little snuggle bug. But he was also very hyper, he took his first step..and I have been chasing him ever since.
Most people that know us, know that Jr was severely burned in a gasoline explosion. Well, It has been almost 6 years since the accident, but it was life altering. He withdrew, he was 15, and he just did not want to talk about it. He ended up making some serious mistakes, and he has 1 more year left to serve.
However he has some special needs concerning his grafted skin. It is really simple, provide white antibacterial soup and plenty of moisturizer. He is having a lot of lesions from his skin getting real tough and then it cracks and gets to being infected. Since he is incarcerated, there has been many flare ups of this happening, and trying to get The Medical to take action at the onset, before it actually becomes an abcess is the most reasonable solutions.
This past June, he had to have ER Surgery because it took so long to get the Jail to understand that he really was sick. I made up my mind then, if it happens again...Momma Bear will not be happy. I did get e response from Senator Warners Office, Channel 12 news, the ACLU, so now it seems that they are going to be able to take care of him like they should.
Most people that know us, know that Jr was severely burned in a gasoline explosion. Well, It has been almost 6 years since the accident, but it was life altering. He withdrew, he was 15, and he just did not want to talk about it. He ended up making some serious mistakes, and he has 1 more year left to serve.
However he has some special needs concerning his grafted skin. It is really simple, provide white antibacterial soup and plenty of moisturizer. He is having a lot of lesions from his skin getting real tough and then it cracks and gets to being infected. Since he is incarcerated, there has been many flare ups of this happening, and trying to get The Medical to take action at the onset, before it actually becomes an abcess is the most reasonable solutions.
This past June, he had to have ER Surgery because it took so long to get the Jail to understand that he really was sick. I made up my mind then, if it happens again...Momma Bear will not be happy. I did get e response from Senator Warners Office, Channel 12 news, the ACLU, so now it seems that they are going to be able to take care of him like they should.
Tuesday, January 17, 2012
Skipped a day...
Yep, I got blogger's block. Actually, there was a lot going on around the house yesterday, and today as well. I can't sleep. But, not much to write about tonight. However, tomorrow I will be writing about quite a lot about my Son, Glenn Jr. It should be interesting to say the least....
Sunday, January 15, 2012
Pain, pain, go away....
I said that to my Hubby this morning. Kinda funny, in that "You had to be there" way. After I said it in a sing-song voice, I could n't get the tune out of my mind. So, all day today I hummed...Pain, pain, go way...Come again another day...LOL.
From what I am beginning to understand about LCH, is that it most often a condition that forever changes your life. Your daily life consists of varying degrees of pain, often severe, and constant fatigue. It drags out, in most cases, for years.
When this all started in March of 2011, I had never heard of this condition. We all thought it was lung cancer, especially after there was a 2 month waiting period in between the 1st and 2nd CT Series done. Following the 2nd, the look on my Pulmonary Specialist's face when he read the report was an expression I will never forget. He couldn't hide his shock, and had me in to the Surgeon in a day and a half. The surgeon told my Hubby that it was not cancer, but Pathology would determine exactly what kind of condition I had. I am really not sure which was/is worse.
From what I am beginning to understand about LCH, is that it most often a condition that forever changes your life. Your daily life consists of varying degrees of pain, often severe, and constant fatigue. It drags out, in most cases, for years.
When this all started in March of 2011, I had never heard of this condition. We all thought it was lung cancer, especially after there was a 2 month waiting period in between the 1st and 2nd CT Series done. Following the 2nd, the look on my Pulmonary Specialist's face when he read the report was an expression I will never forget. He couldn't hide his shock, and had me in to the Surgeon in a day and a half. The surgeon told my Hubby that it was not cancer, but Pathology would determine exactly what kind of condition I had. I am really not sure which was/is worse.
Friday, January 13, 2012
Rocked it
For the past two days, I have felt horrible. I did not even go to my weekly "Crafting with the Girl's" last night. Hubby (Glenn's new nickname) even offered to drive me but my whole body was swollen, and was in a lot of pain. I did not even feel like trying to fake it.
Well, needless to say, Hubby did everything around the house. He is so awesome about that nowadays. I appreciated the pampering so much, I decided I would make something special for dinner. Looking through the cabinets, the fridge, and freezer, I had Shrimp, Langistino Tails...hmmm. I decided on seafood enchiladas. And I rocked it. I have not enjoyed seafood enchiladas in such a long time. It was fantastic, and I did not even use a recipe.
We are kicked back now enjoying the satisfaction of an awesome meal...and some peace and quiet in the house. Doesn't get much better....
Well, needless to say, Hubby did everything around the house. He is so awesome about that nowadays. I appreciated the pampering so much, I decided I would make something special for dinner. Looking through the cabinets, the fridge, and freezer, I had Shrimp, Langistino Tails...hmmm. I decided on seafood enchiladas. And I rocked it. I have not enjoyed seafood enchiladas in such a long time. It was fantastic, and I did not even use a recipe.
We are kicked back now enjoying the satisfaction of an awesome meal...and some peace and quiet in the house. Doesn't get much better....
Thursday, January 12, 2012
I love my Hubby
I have an awesome husband. Has it always been so..maybe or maybe not. I think we have reached that wonderful stage that we have put our all into our relationship, and because we have stuck it out, it is awesome. But I am truly blessed that during my bad days, he does laundry, or whatever needs to be done to help out. I also do not always give him credit for all the little things he does.
So, Kudo's to you Honey. And thank you for all you do.
So, Kudo's to you Honey. And thank you for all you do.
Wednesday, January 11, 2012
It has not made me stronger
Today I went to the support group on Facebook for Adults with some form of Histio, Adult Histio Warriors. It is a closed group. We can be there for each other, and talk about things like symptoms, that we would not want to shout out to the rest of the public. And for real, we have some awesome people in our group. I am humbled by the strength of the people who are fighting this disease.
But one particular post caught my attention. One of the women who has been diagnosed for quite awhile said something to the effect...If One more Person tells me that God only gives you what He thinks you can handle....Well, I don't remember exactly what she said...but I have said that many, many times. And things that don't kill ya makes ya stronger....
Nope, it is not true. I believe in God. I believe in the power of prayer. I do not think that after years and years of going through Physical and Mental Hell that it makes you stronger..it makes you numb. Seriously, I just think that most people do not want to admit it. I am ready to shout it to the Grand Canyon.
For at least 7 years, our Family has been tortured. Yes, I did say it, Tortured. Both Mothers struggled with Cancer. Father-in-Law had Cancer, then Alzheimer's, our Son was burned, our health declined, our son went to prison, we are still taking care of Dad, and I have Histio. I think I will take a Xanax now...lol.
But one particular post caught my attention. One of the women who has been diagnosed for quite awhile said something to the effect...If One more Person tells me that God only gives you what He thinks you can handle....Well, I don't remember exactly what she said...but I have said that many, many times. And things that don't kill ya makes ya stronger....
Nope, it is not true. I believe in God. I believe in the power of prayer. I do not think that after years and years of going through Physical and Mental Hell that it makes you stronger..it makes you numb. Seriously, I just think that most people do not want to admit it. I am ready to shout it to the Grand Canyon.
For at least 7 years, our Family has been tortured. Yes, I did say it, Tortured. Both Mothers struggled with Cancer. Father-in-Law had Cancer, then Alzheimer's, our Son was burned, our health declined, our son went to prison, we are still taking care of Dad, and I have Histio. I think I will take a Xanax now...lol.
The World in other words..My life.
My day starts with going to the restroom, Wash my face, brush mt flyaway hair, and try not to squeal...Eeeek....that scares me. Poor hubby, he has to wake up with a with that vision etched in his memory every morning. Bless him, he gives me a kiss and he tells me he loves me!!
I have a couple of pictures to upload to show my Blackish eyes, and what my living room looks like, I think that it would wise for my friends and family to run for the hills, because I could easily bury someone under all of the totes and boxes. LOL!! I have set a goal to consolidate all of our Christmas decorations with his parents, and my Mothers collection. Then I will pack things in similar catergories, to make it easier each year to find the decoration I want to use for years to come.
I am also working on my projects for The Art for Molly. I am excited to be able to help out!!! And I can't wait until I can mail them off, I really think they will do well.
It is 3:23 am, And once again, sleep eludes me. Pain and nausea are beating mr up tonight!!
I have a couple of pictures to upload to show my Blackish eyes, and what my living room looks like, I think that it would wise for my friends and family to run for the hills, because I could easily bury someone under all of the totes and boxes. LOL!! I have set a goal to consolidate all of our Christmas decorations with his parents, and my Mothers collection. Then I will pack things in similar catergories, to make it easier each year to find the decoration I want to use for years to come.
I am also working on my projects for The Art for Molly. I am excited to be able to help out!!! And I can't wait until I can mail them off, I really think they will do well.
It is 3:23 am, And once again, sleep eludes me. Pain and nausea are beating mr up tonight!!
Sunday, January 8, 2012
The World...hmmm...Navigating...hmmm
So, Navigating through the World, With Histio.... This is the idea that came to me after talking my Friend Amelia. She is so brilliant. I adore her "eye", her photos are awe inspiring. It is her vision that takes one of her photos, and somehow, it seems like you are there also. Well, I asked her about whether she would think about helping me create an archive, a collection of photos to more or less tell the part of my story that most people usually would not see. And she suggested I have my husband use a recorder because he sees me at my best and worst...poor dude!!! I could do that, and take the film to someone who knows film, as in editing, and fine tuning video with audio.
So the more I thought about it, the more I thought about what Amelia said, Did I tell you she is brilliant? I went to her blog and I realized that using this blog as kinda like a GPS, we can mange our journey through unfamiliar territory. While I am sitting here the thoughts just race through my mind. And I realize how much potential this aspect has. I can blog about all of the medical facts, keep family informed, and give support to someone who's life is in some way affected by Histiocytosis. I can also post photos here as well. Thank You Amelia...your suggestion gave me an awesome idea!!
So the more I thought about it, the more I thought about what Amelia said, Did I tell you she is brilliant? I went to her blog and I realized that using this blog as kinda like a GPS, we can mange our journey through unfamiliar territory. While I am sitting here the thoughts just race through my mind. And I realize how much potential this aspect has. I can blog about all of the medical facts, keep family informed, and give support to someone who's life is in some way affected by Histiocytosis. I can also post photos here as well. Thank You Amelia...your suggestion gave me an awesome idea!!
Saturday, January 7, 2012
First Splash
I am an Orphan..no...really. I have an Orphan disease called Langerhan's Cell Histiocytosis. It is called an orphan disease because it is so rare, it does not qualify for any Federal Grants to conduct research. And at times..(a lot lately) I start feeling very lonely, I do not understand everything about this disease, so it makes it very hard to explain to others.
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