This week is one week that I am very glad is almost over. Car wreck, status of car STILL in question, pain management procedure, babysitting job not going as planned, and I am not looking forward to whatever challenges might come tomorrow.
I know that I will pull up the live video feed of the sermon and listen/watch that. The boys are going to enjoy what me and mom got them for christmas, art supplies (I LOVE Crayola) and that should make tomorrow go better. I am just so exhausted it is not even fun. My migraines are out of control again.
My CPAP mask just broke. ARGH! Actually it broke about 5min before I started this post. Will be calling the DME in a few to see if they have anyway to help me out.
Melinda
Saturday, December 20, 2008
Wednesday, December 17, 2008
Night before procedure and other thoughts
It is the night before yet another procedure, steroid injections with fluroscopy guidance while under conscious sedation. Boy is that a freakin long name. I have to be at outpatient day surgery at 6am and the procedure is slated to start at 7:30am. It shouldnt take the doctor more than 30 minutes after I am out to get everything that he needs to do done, but if it is longer it is okay by me.
The recovery room should take between 60-90 minutes depending on how quickly my body metabolizes the medication, fentanyl and versed. But with how whacked out my body's absorption abilities are at the current moment I will be happily surprised if it doesnt take longer.
I will feel drugged and out of it for at least 12 hours after the procedure, I specifically mean time starting from after the drug push.
I am typing this as I wait for step 2 of the nutragena skin id face cleanser stuff to dry. I have tried so many things through the years, especially after starting replacement steroids, to manage/prevent my acne. This stuff really actually works.
There are 3 steps to the system, a cleanser an acne preventor and a hydrator. I use all 3 every night and just the cleanser and hydrator in the morning. My problems with prior regimnes is most commonly skin sensitivity/redness/dry flakey skin...I dont have those when I am doing the aformentioned routine.
The recovery room should take between 60-90 minutes depending on how quickly my body metabolizes the medication, fentanyl and versed. But with how whacked out my body's absorption abilities are at the current moment I will be happily surprised if it doesnt take longer.
I will feel drugged and out of it for at least 12 hours after the procedure, I specifically mean time starting from after the drug push.
I am typing this as I wait for step 2 of the nutragena skin id face cleanser stuff to dry. I have tried so many things through the years, especially after starting replacement steroids, to manage/prevent my acne. This stuff really actually works.
There are 3 steps to the system, a cleanser an acne preventor and a hydrator. I use all 3 every night and just the cleanser and hydrator in the morning. My problems with prior regimnes is most commonly skin sensitivity/redness/dry flakey skin...I dont have those when I am doing the aformentioned routine.
Monday, December 1, 2008
What if We....
What if we took the time
to treasure the raindrops
jump in the puddles
sing in the rain
What if we celebrated
every second
every minute
every hour
every day
of our lives
What if we made the time....
lay out at night and count the stars
find the time to stop and gather wildflowers
gaze out the window and make pictures out of the clouds
What if we saw other people like God sees them
see them for their attributes
and not their faults
we didnt stare at
the bald child
the sick child
the jaundiced child
the seizing child
the autistic child
the abused child
the neglected child
the crying child
the silent child
the worried child
the grieving child
And just saw them
for the children that they are.
Melinda
to treasure the raindrops
jump in the puddles
sing in the rain
What if we celebrated
every second
every minute
every hour
every day
of our lives
What if we made the time....
lay out at night and count the stars
find the time to stop and gather wildflowers
gaze out the window and make pictures out of the clouds
What if we saw other people like God sees them
see them for their attributes
and not their faults
we didnt stare at
the bald child
the sick child
the jaundiced child
the seizing child
the autistic child
the abused child
the neglected child
the crying child
the silent child
the worried child
the grieving child
And just saw them
for the children that they are.
Melinda
Sunday, November 30, 2008
For all of our soldiers near and far
SOLDIERS NIGHT BEFORE X-MAS
He lived all alone
In a one bedroom house
Made of plaster and stone.
I had come down the chimney
With presents to give,
And to see just who
In this home did live.
I looked all about,
A strange sight did I see
...No tinsel, no presents,
Not even a tree!
No stockings by the mantle,
Just boots filled with sand;
On the wall hung pictures
Of far and distant lands.
With medals and badges,
Awards of all kinds
...A sober thought came
Through my mind.
For this house was different
...It was dark and dreary;
I found the house of a soldier,
Once I could see clearly.
The soldier lay sleeping,
Silent, alone
...Curled upon the floor
In this one bedroom home.
The face was so gentle,
The room in such disorder;
Not how I pictured
A United States soldier.
Was this the hero
Of whom I just read?
Curled up on a poncho
...The floor for a bed?
I realized the families
I saw on this night,
Owed their lives to these soldiers,
Who were willing to fight.
Soon 'round the world
The children would play;
And grownups would celebrate
A bright Christmas day.
They all enjoyed freedom
Each month of the year,
Because of the soldiers,
Like the one lying here.
I couldn't help wonder
How many lay alone,
On a cold Christmas Eve,
In a land far from home.
The very thought
Brought a tear to my eye;
I dropped to my knees
And started to cry.
The soldier awakened
And I heard a rough voice,
"Santa, don't cry,
This life is my choice.
I fight for freedom,
I don't ask for more;
My life is my God,
My country, my Corps.
"The soldier rolled over
And drifted to sleep;
I couldn't control it
...I started to weep.
I kept watch for hours,
So silent and still;
And we both just shivered
From the cold night's chill.
I didn't want to leave
On that cold, dark night,
This Guardian of Honor
...So willing to fight.
The soldier rolled over,
With a voice soft and pure,
Whispered, "Carry on, Santa!
It's Christmas Day ... all is secure."
One look at my watch
And I knew he was right;
Merry Christmas, my friend,
And to all a Good Night!
Melinda
He lived all alone
In a one bedroom house
Made of plaster and stone.
I had come down the chimney
With presents to give,
And to see just who
In this home did live.
I looked all about,
A strange sight did I see
...No tinsel, no presents,
Not even a tree!
No stockings by the mantle,
Just boots filled with sand;
On the wall hung pictures
Of far and distant lands.
With medals and badges,
Awards of all kinds
...A sober thought came
Through my mind.
For this house was different
...It was dark and dreary;
I found the house of a soldier,
Once I could see clearly.
The soldier lay sleeping,
Silent, alone
...Curled upon the floor
In this one bedroom home.
The face was so gentle,
The room in such disorder;
Not how I pictured
A United States soldier.
Was this the hero
Of whom I just read?
Curled up on a poncho
...The floor for a bed?
I realized the families
I saw on this night,
Owed their lives to these soldiers,
Who were willing to fight.
Soon 'round the world
The children would play;
And grownups would celebrate
A bright Christmas day.
They all enjoyed freedom
Each month of the year,
Because of the soldiers,
Like the one lying here.
I couldn't help wonder
How many lay alone,
On a cold Christmas Eve,
In a land far from home.
The very thought
Brought a tear to my eye;
I dropped to my knees
And started to cry.
The soldier awakened
And I heard a rough voice,
"Santa, don't cry,
This life is my choice.
I fight for freedom,
I don't ask for more;
My life is my God,
My country, my Corps.
"The soldier rolled over
And drifted to sleep;
I couldn't control it
...I started to weep.
I kept watch for hours,
So silent and still;
And we both just shivered
From the cold night's chill.
I didn't want to leave
On that cold, dark night,
This Guardian of Honor
...So willing to fight.
The soldier rolled over,
With a voice soft and pure,
Whispered, "Carry on, Santa!
It's Christmas Day ... all is secure."
One look at my watch
And I knew he was right;
Merry Christmas, my friend,
And to all a Good Night!
Melinda
Saturday, November 29, 2008
Thanksgiving Thoughts
I know that it is a little late, but I wasn't sure I could put into words what I am thankful for without losing it emotionally...so I will start with doing 1 thing or person and why at a time.
I am thankful for having been blessed with a daddy who was not afraid to do unmanly things with me. My dad would fix my hair and help me wash it, it was butt length and thus a little hard for me as a child to get completely clean by myself.
My dad taught me how to put on make-up, granted it was big and bold for stage but he took me to the store and we spent quality time in the make up isle together picking out what I needed and wanted. That was a big deal me in the 2nd grade and I had real make up. I got to my teenage years and I knew how to do stage make up but didnt know how to do make up for daily life.
My dad wasn't ever afraid, at least he didn't show it, to try my baking creations. My first attempt at baking a cake was a disaster but he acted like it was the most delicious thing he had ever tasted. And when I tried to make homemade icing for us to try, he did not seem to mind even when I made a mistake and put way too much salt in it.
In elementary school, he would wake me up for school and then we would snuggle in his and mom's bed and watch the today show together and would talk about totally random things. He would also sometimes just show up randomly at school to take me out to lunch or bring up a surprise. The surprise could be as simple as a candy bar from the convience store to a book I wanted to read to the occasional flowers, and there would generally be no specific occasion for the surprises they were just known as happy whatever day of the week it was.
Grades 5-8 were a little different than most teenager's middle school experience, my dad taught high school in the same building that I went to middle school in. In middle school my health started to worsen and I was having more headaches and such, and he was always there to try and make it better. I remember coming to his room on a pass and staying in his office and laying down underneath his desk, I had a pillow and blanket in his office. Or I would stay in his room and just help in there for an hour or so, it was generally quieter in there than where I really was supposed to be.
Ninth grade is when everything broke, I went to the hospital for a pain management stay and almost died. I was admitted in april, discharged for a few days in may, came back and was discharged and later admitted to a different hospital for the rest of may. My dad was at that time recording his music and going to different churches for speaking and singing engagements, he cancelled all his engagements and stayed in the hospital with me. I was his first priority, besides his relationship with God, and that was a true blessing for me. He faught for me at my highschool when needed to, some people there were not supportive and understanding that I was fighting for my life in PICU and one person in particular was trying to expell me for being absent...sure I can come to school with an IV and on strong pain meds and sometimes on full bedrest, sure.
For now that is all I am going to say, next it is why I am thankful for my momma, Yes I said momma and I mean it she is not just Mom or Mommy (those are her other names) but she is never ever to be known as Mother.
Melinda
I am thankful for having been blessed with a daddy who was not afraid to do unmanly things with me. My dad would fix my hair and help me wash it, it was butt length and thus a little hard for me as a child to get completely clean by myself.
My dad taught me how to put on make-up, granted it was big and bold for stage but he took me to the store and we spent quality time in the make up isle together picking out what I needed and wanted. That was a big deal me in the 2nd grade and I had real make up. I got to my teenage years and I knew how to do stage make up but didnt know how to do make up for daily life.
My dad wasn't ever afraid, at least he didn't show it, to try my baking creations. My first attempt at baking a cake was a disaster but he acted like it was the most delicious thing he had ever tasted. And when I tried to make homemade icing for us to try, he did not seem to mind even when I made a mistake and put way too much salt in it.
In elementary school, he would wake me up for school and then we would snuggle in his and mom's bed and watch the today show together and would talk about totally random things. He would also sometimes just show up randomly at school to take me out to lunch or bring up a surprise. The surprise could be as simple as a candy bar from the convience store to a book I wanted to read to the occasional flowers, and there would generally be no specific occasion for the surprises they were just known as happy whatever day of the week it was.
Grades 5-8 were a little different than most teenager's middle school experience, my dad taught high school in the same building that I went to middle school in. In middle school my health started to worsen and I was having more headaches and such, and he was always there to try and make it better. I remember coming to his room on a pass and staying in his office and laying down underneath his desk, I had a pillow and blanket in his office. Or I would stay in his room and just help in there for an hour or so, it was generally quieter in there than where I really was supposed to be.
Ninth grade is when everything broke, I went to the hospital for a pain management stay and almost died. I was admitted in april, discharged for a few days in may, came back and was discharged and later admitted to a different hospital for the rest of may. My dad was at that time recording his music and going to different churches for speaking and singing engagements, he cancelled all his engagements and stayed in the hospital with me. I was his first priority, besides his relationship with God, and that was a true blessing for me. He faught for me at my highschool when needed to, some people there were not supportive and understanding that I was fighting for my life in PICU and one person in particular was trying to expell me for being absent...sure I can come to school with an IV and on strong pain meds and sometimes on full bedrest, sure.
For now that is all I am going to say, next it is why I am thankful for my momma, Yes I said momma and I mean it she is not just Mom or Mommy (those are her other names) but she is never ever to be known as Mother.
Melinda
Tuesday, November 25, 2008
Writing to Relax
Right now I am still up, and although for many people 10pm is not that late when you have to get up at 5am the next day to go to work it is.
I am watching TLC and crocheting (when I am not typing here) or reading my kids caringbridge site. No they are not really "my" kids, but when you have them through cole's foundation and you are their prayer warrior it seems more and more like they are your kids.
I have 6 kids, more than most of the foundation's volunteers but I have the time and felt that that was the number of children that I should be ministering too on a long term basis. The conditions range from various forms of childhood cancer, a rare form of anemia, and one of the main conditions that I have IH.
I still havent found my car keys. I guess I did a little too much when I rearranged my room and that is when I lost them. The only problem is the key to the kids I babysit's house was on the key chain so I have got to get that key remade, I guess I will make a run to home depot after the grandma gets home from work and make a new copy of the key so we can go somewhere on thursday if they behave for me on wednesday.
I am bringing a set of fuzzy posters for them to work on, my laptop, crochet and extra yarn...in addition to that I will be bringing safe foods for me to eat along with my cell phone charger.
I am watching TLC and crocheting (when I am not typing here) or reading my kids caringbridge site. No they are not really "my" kids, but when you have them through cole's foundation and you are their prayer warrior it seems more and more like they are your kids.
I have 6 kids, more than most of the foundation's volunteers but I have the time and felt that that was the number of children that I should be ministering too on a long term basis. The conditions range from various forms of childhood cancer, a rare form of anemia, and one of the main conditions that I have IH.
I still havent found my car keys. I guess I did a little too much when I rearranged my room and that is when I lost them. The only problem is the key to the kids I babysit's house was on the key chain so I have got to get that key remade, I guess I will make a run to home depot after the grandma gets home from work and make a new copy of the key so we can go somewhere on thursday if they behave for me on wednesday.
I am bringing a set of fuzzy posters for them to work on, my laptop, crochet and extra yarn...in addition to that I will be bringing safe foods for me to eat along with my cell phone charger.
Lost Keys....Garage Door not working
Today just seems like nothing is working right. I can't find my car keys which has the house key for where I babysit (and I need it for tomorrow), along with my very expensive to duplicate car keys.
I get out the spare set of keys that don't have a house key on them. And go to workout. Come home and use the keypad to get into the garage door and it doesn't open all the way.
I just wanna go back to sleep and wake up and start the day over. Maybe I will take a little nap and wake up with an epiphany and will find the keys....atleast I can hope.
Melinda
I get out the spare set of keys that don't have a house key on them. And go to workout. Come home and use the keypad to get into the garage door and it doesn't open all the way.
I just wanna go back to sleep and wake up and start the day over. Maybe I will take a little nap and wake up with an epiphany and will find the keys....atleast I can hope.
Melinda
Monday, November 24, 2008
Just another Monday
Yesterday was just another monday. I tried to stop my night time dose of solu cortef too quickly and spent the majority of the time sleeping in low cortisol fog. I didn't get a phone call from deeana so I will call and ask about results later today, after about 9:30am since she doesn't get into the office until 9am.
One of my blogger buddies, is having a difficult time. Oh I would not call it extremely difficult but they are getting the blessing of learning patience and peace in all circumstances. I think the parents thought that they had learned the 2 "p's" but obivously God needs to reinforce the lesson.
I rearranged my room and washed my sheets and 1 of the blankets today. That is all in preparation for the window installer to come.
One of my blogger buddies, is having a difficult time. Oh I would not call it extremely difficult but they are getting the blessing of learning patience and peace in all circumstances. I think the parents thought that they had learned the 2 "p's" but obivously God needs to reinforce the lesson.
I rearranged my room and washed my sheets and 1 of the blankets today. That is all in preparation for the window installer to come.
Wednesday, November 19, 2008
On the Right Track
Today we finally got the phone call to set up the fancy absorption test that Dr. R, my GI, wants done before he does anything more aggressive to figure out what is going on with my gut.
The test although very time consuming, 5 hours in length, is fairly simple for me. I fast after midnight, have a couple of lab draws, and a couple of urine samples. It should take about 48 hours maximum to get the results which will put it late friday or monday morning before I will get a phone call from deeana, dr. r's nurse, with the next steps in the treatment protocol.
The test although very time consuming, 5 hours in length, is fairly simple for me. I fast after midnight, have a couple of lab draws, and a couple of urine samples. It should take about 48 hours maximum to get the results which will put it late friday or monday morning before I will get a phone call from deeana, dr. r's nurse, with the next steps in the treatment protocol.
Sunday, November 16, 2008
A Short Introduction
I am a 22 year old female who has several serious medical conditions that I have to deal with on a daily basis just to continue living.
Panhypopituitarism. What in the world is that you might ask. The condition is where your pituitary gland, which produces many hormones and the trigger hormones that make all the other parts of the endocrine system work, either under produces or doesn't produce any at all of at least 2 or more hormones. The deficency that is key to managing for maintaining life is the adrenal insufficency or addision's disease. President Kennedy also had addison's disease.
Intracranial Hypertension. This is when your body overproduces cerebrospinal fluid that you have surrounding your brain and spinal cord to pad them and provide nutrition. The over production of spinal fluid cant be managed by the body's ability to reabsorb, thus the fluid builds up and causes the worst headache in your life and vision problems.
Celiac Disease? There is a question mark behind this one since we are still testing for the disease, but we are doing the treatment for celiac as if I have it to improve quality of life and correct my nutrient imbalances
Panhypopituitarism. What in the world is that you might ask. The condition is where your pituitary gland, which produces many hormones and the trigger hormones that make all the other parts of the endocrine system work, either under produces or doesn't produce any at all of at least 2 or more hormones. The deficency that is key to managing for maintaining life is the adrenal insufficency or addision's disease. President Kennedy also had addison's disease.
Intracranial Hypertension. This is when your body overproduces cerebrospinal fluid that you have surrounding your brain and spinal cord to pad them and provide nutrition. The over production of spinal fluid cant be managed by the body's ability to reabsorb, thus the fluid builds up and causes the worst headache in your life and vision problems.
Celiac Disease? There is a question mark behind this one since we are still testing for the disease, but we are doing the treatment for celiac as if I have it to improve quality of life and correct my nutrient imbalances
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