Pearls and Dreams
And once again, Pk is reminded of her stubborn streak that caused her to refuse to take algebra and thus giving up the dream she'd had since she was 3 about becoming a doctor. Fifteen year olds, really should not be allowed to throw away dreams. Forty year olds will have to regret what the 15 year old did.
Take the quiz: "What is your ideal job?"
Doctor / Nurse
Your ideal career is one in the medical area, It's great pay, if you can make it through years of university!
Dr. Suess
"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"
Monday, January 31, 2005
Pearls and Dreams
Pearls and Dreams
Take the quiz: "Your Psych-Ward diagnosis"
Attention Deficit Hyperactive Disorder
Diagnosis: (ADHD), formerly called hyperkinesis or minimal brain dysfunction, a chronic, neurologically based syndrome characterized by any or all of three types of behavior: hyperactivity, distractibility, and impulsivity.
I was diagnosed so long ago, they still called it hyperkinesis, then the minimal brain dysfunction ...
I was a girl born in 1964. Long before it was commonly acknowledged that girls could get this. Can you imagine what a nightmare I must have been to parent??????
My poor mother!
Take the quiz: "Your Psych-Ward diagnosis"
Attention Deficit Hyperactive Disorder
Diagnosis: (ADHD), formerly called hyperkinesis or minimal brain dysfunction, a chronic, neurologically based syndrome characterized by any or all of three types of behavior: hyperactivity, distractibility, and impulsivity.
I was diagnosed so long ago, they still called it hyperkinesis, then the minimal brain dysfunction ...
I was a girl born in 1964. Long before it was commonly acknowledged that girls could get this. Can you imagine what a nightmare I must have been to parent??????
My poor mother!
Sunday, January 30, 2005
Stepping out and stretching
Pearls and Dreams
Sounds like I'm getting ready to work out huh?
Spiritually, emotionally I am.
I am finding my quiet little box harder and harder to remain content to be in.
I have agreed to co chair the mother/daughter sleepover in April for our children's ministry. I had one of my sons birthday parties that could be classified as a success. The rest of them (oldest son is 15, youngest is 13 so you can see, there has been plenty of experience) have all been BOMBS.
I can't throw a birthday party for 5 to 8 kids ..but I'm co chairing a sleepover for 25 to 30 girls and their mothers. Had I not been the co chair for the kids night out in September ... I'd not be as excited as I was. It seems, I can't throw a party for 5 kids, however, my FROG nite was a HUGE success and kids are STILL talking about it. THREE kids asked me today if I'm planning the Valentines Kids night out!!!!
So, I have one success under my belt ..and idea's forming for the sleepover. I thought it was ironic after the planning meeting yesterday that the 2 women who are co chairs ..have sons not daughters. Then realized how that would work to the advantage of all. A mother in charge of the event with a daughter there ..would have to do both. Now, all the mom's of daughters ..can play with their daughters. Soooo
We're going to have a beach party as our theme ... I can't wait! They're going to make designer flip flops (adding material, ribbons, buttons etc to flip flops) and do sand art and maybe a sand candle. The devotion that I told the children's pastor that she's going to do is out of Psalms 139 where David says that he is grateful for God's thoughts toward him that number greater than the sand. So the girls will learn that God thinks about them every day and planned for them to be just exactly who they are.
Ok ..that's off in April ... sooo fun.
But right now ... I'm starting a new ministry in the kids ministry. It's been weighing on me for quite a while that it needs to be done. I shared the idea with someone else and they said they loved it, and they were going to do it ..and they never did ...
Well, we used to have a ministry at our church called PIPP ... Pastors intercessory Prayer Partners. People would commit to praying for one staff member for a full year and the staff member would committ to sharing with that partner 2ce a month what needs have to be prayed for. Well, I knew we have some kids in our kids ministry that are REAL prayer kids ...my son is one of them.
I wanted my son to be a part of this ministry but at 13 and developmental delays ..he's not quite up to being able to really be able to properly be a part of PIPP ... so then it hit me ...why not a PIPP Jr.? Why not have it aimed AT the kids, we could do it on a Sunday where the parents wouldn't have to bring the kids in on another day. (PIPP meets on a Saturday)
Well, it was going to go under the PIPP umbrella ..but PIPP never got going again (met from Sept - June) and I waited and I waited ... and I realized ...I'm on the children's ministry team ... and there is no reason why PIPP jr cannot be done anyway.
So I emailed our children's pastor and she was in full agreement. The week after Feb 7th when the staff meeting meets ... I go in and talk to the kids and invite them to pray ... I'll go get the kids who want to do it ..and once a month, take them to the staff member to pray outloud for the pastor or staff member.
The staff member would know that it's their month and would have a list of prayer needs (in kid friendly language) that the kids could take home with them to remember what it is that they are praying for the staff member.
This is one way to start the kids off realizing that they have a vital role in the development of the church and the functioning of the church ...
I'm excited and nervous ..working with kids is not my strength, I only joined the Children's ministry team as a 'brainstormer' as a way of being a part of the ministry to my son ... my heart is in the worship ministry ... but ... I'm finding that it doesn't matter where I am serving at this point ... God is asking me to step out and stretch.
Sounds like I'm getting ready to work out huh?
Spiritually, emotionally I am.
I am finding my quiet little box harder and harder to remain content to be in.
I have agreed to co chair the mother/daughter sleepover in April for our children's ministry. I had one of my sons birthday parties that could be classified as a success. The rest of them (oldest son is 15, youngest is 13 so you can see, there has been plenty of experience) have all been BOMBS.
I can't throw a birthday party for 5 to 8 kids ..but I'm co chairing a sleepover for 25 to 30 girls and their mothers. Had I not been the co chair for the kids night out in September ... I'd not be as excited as I was. It seems, I can't throw a party for 5 kids, however, my FROG nite was a HUGE success and kids are STILL talking about it. THREE kids asked me today if I'm planning the Valentines Kids night out!!!!
So, I have one success under my belt ..and idea's forming for the sleepover. I thought it was ironic after the planning meeting yesterday that the 2 women who are co chairs ..have sons not daughters. Then realized how that would work to the advantage of all. A mother in charge of the event with a daughter there ..would have to do both. Now, all the mom's of daughters ..can play with their daughters. Soooo
We're going to have a beach party as our theme ... I can't wait! They're going to make designer flip flops (adding material, ribbons, buttons etc to flip flops) and do sand art and maybe a sand candle. The devotion that I told the children's pastor that she's going to do is out of Psalms 139 where David says that he is grateful for God's thoughts toward him that number greater than the sand. So the girls will learn that God thinks about them every day and planned for them to be just exactly who they are.
Ok ..that's off in April ... sooo fun.
But right now ... I'm starting a new ministry in the kids ministry. It's been weighing on me for quite a while that it needs to be done. I shared the idea with someone else and they said they loved it, and they were going to do it ..and they never did ...
Well, we used to have a ministry at our church called PIPP ... Pastors intercessory Prayer Partners. People would commit to praying for one staff member for a full year and the staff member would committ to sharing with that partner 2ce a month what needs have to be prayed for. Well, I knew we have some kids in our kids ministry that are REAL prayer kids ...my son is one of them.
I wanted my son to be a part of this ministry but at 13 and developmental delays ..he's not quite up to being able to really be able to properly be a part of PIPP ... so then it hit me ...why not a PIPP Jr.? Why not have it aimed AT the kids, we could do it on a Sunday where the parents wouldn't have to bring the kids in on another day. (PIPP meets on a Saturday)
Well, it was going to go under the PIPP umbrella ..but PIPP never got going again (met from Sept - June) and I waited and I waited ... and I realized ...I'm on the children's ministry team ... and there is no reason why PIPP jr cannot be done anyway.
So I emailed our children's pastor and she was in full agreement. The week after Feb 7th when the staff meeting meets ... I go in and talk to the kids and invite them to pray ... I'll go get the kids who want to do it ..and once a month, take them to the staff member to pray outloud for the pastor or staff member.
The staff member would know that it's their month and would have a list of prayer needs (in kid friendly language) that the kids could take home with them to remember what it is that they are praying for the staff member.
This is one way to start the kids off realizing that they have a vital role in the development of the church and the functioning of the church ...
I'm excited and nervous ..working with kids is not my strength, I only joined the Children's ministry team as a 'brainstormer' as a way of being a part of the ministry to my son ... my heart is in the worship ministry ... but ... I'm finding that it doesn't matter where I am serving at this point ... God is asking me to step out and stretch.
more fun quizzes
Pearls and Dreams
You are a Brainy Girl!Whether you're an official student or a casual learner, you enjoy hitting the books. You know a little bit about everything, and you're always dying to know more. For a guy to win your heart, he's got to share some of your intellectual interests. A awesome book collection of his own doesn't hurt either! What Kind of Girl Are You? Take This Quiz :-) |
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Saturday, January 29, 2005
What number?
Pearls and Dreams
Ok, I wanted to post this, but I didn't want the poem I posted to get skipped ...so still look at the posting below this one.
Ok, I wanted to post this, but I didn't want the poem I posted to get skipped ...so still look at the posting below this one.
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You Are the Peacemaker |
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9 You are emotionally stable and willing to find common ground with others. Your friends and family often look to you to be the mediator when there is conflict. You are easy going and accepting. You take things as they come. Avoding conflict at all costs, you're content when things are calm. |
Pearls and Dreams
Pearls and Dreams
Deeds To Crowns
A sad little girl, she skinned her knee.
I gave her a kiss and she smiled at me.
A diamond dropped from where she was kissed.
An angel took it to heaven where it would not be missed.
I read a story to my grandmother, frail.
My grandmother grinned, "I knew you'd not fail"
A ruby was left in the place I had sat.
An angel took it to heaven like that!
In the quiet of my bedroom late one night.
I prayed for the president for strength not fright!
Turning over in my bed, an emerald was left.
The angel deposited it in heaven, there'd be no theft.
I wrote a note to the husband I love.
He sent a prayer to the Father above.
When I put down the pen an opal was there.
An angel quickly flew with the gem through the air!
A missionary from South America came.
I gave him some money so lives would not be the same.
As I closed my checkbook, a topaz fell out.
The angel went flying, rejoicing with a shout!
One day my life came to an end.
I stood before God, alone without a friend.
God placed a crown with gems on my head.
The diamonds and rubies, for my works not dead!
Each deed we do for obedience sake,
Each prayer turns to a gem in our wake.
Though we cannot see the gems we acquire.
Their beauty withstands the purifying fire!
So remember when you grow weary and tired.
Your promise from God will not be expired.
One day a crown of gemstones so bright.
Will be placed on your head reflecting God's light!
© Peggikaye Eagler
Deeds To Crowns
A sad little girl, she skinned her knee.
I gave her a kiss and she smiled at me.
A diamond dropped from where she was kissed.
An angel took it to heaven where it would not be missed.
I read a story to my grandmother, frail.
My grandmother grinned, "I knew you'd not fail"
A ruby was left in the place I had sat.
An angel took it to heaven like that!
In the quiet of my bedroom late one night.
I prayed for the president for strength not fright!
Turning over in my bed, an emerald was left.
The angel deposited it in heaven, there'd be no theft.
I wrote a note to the husband I love.
He sent a prayer to the Father above.
When I put down the pen an opal was there.
An angel quickly flew with the gem through the air!
A missionary from South America came.
I gave him some money so lives would not be the same.
As I closed my checkbook, a topaz fell out.
The angel went flying, rejoicing with a shout!
One day my life came to an end.
I stood before God, alone without a friend.
God placed a crown with gems on my head.
The diamonds and rubies, for my works not dead!
Each deed we do for obedience sake,
Each prayer turns to a gem in our wake.
Though we cannot see the gems we acquire.
Their beauty withstands the purifying fire!
So remember when you grow weary and tired.
Your promise from God will not be expired.
One day a crown of gemstones so bright.
Will be placed on your head reflecting God's light!
© Peggikaye Eagler
Friday, January 28, 2005
Pearls and Dreams
Pearls and Dreams
Don't know what it is ... but an 2 hours ago it was rain ...now all this white stuff is falling down ... big things, fluffy white ...looks like cotton balls ... just about as big too! About a half inch around!!!!! HUGE BIG WHITE THINGS
My grass is covered in the white stuff ...my porch is covered ... my car is covered! I have my mother's red car ... and you can't find the red because it's white!!!!
Why is there white stuff falling from my sky?????
Don't know what it is ... but an 2 hours ago it was rain ...now all this white stuff is falling down ... big things, fluffy white ...looks like cotton balls ... just about as big too! About a half inch around!!!!! HUGE BIG WHITE THINGS
My grass is covered in the white stuff ...my porch is covered ... my car is covered! I have my mother's red car ... and you can't find the red because it's white!!!!
Why is there white stuff falling from my sky?????
Thursday, January 27, 2005
Pearls and Dreams
Pearls and DreamsYour Score Summary
Overall, you scored as follows:
71% are cooler, and
29% are more of a loser than you.
What does this mean?
Tending towards loser status, get help soon
Overall, you scored as follows:
71% are cooler, and
29% are more of a loser than you.
What does this mean?
Tending towards loser status, get help soon
Pearls and Dreams
Pearls and Dreams
Your Score Summary
Overall, you scored as follows:
75% scored higher (more nerdy), and 25% scored lower (less nerdy).
What does this mean? Your nerdiness is:Not nerdy, but definitely not hip.
Your Score Summary
Overall, you scored as follows:
75% scored higher (more nerdy), and 25% scored lower (less nerdy).
What does this mean? Your nerdiness is:Not nerdy, but definitely not hip.
Pearls and Dreams
Pearls and Dreams
Thanks for taking the Weird Quotient test
Your score is:
89
Of all the weird test takers:
73% are more weird,
10% are just as weird, and
18% are more normal than you!
For your hard work, here is a prize:
To place this image on your web page; select, copy and paste this code to your page:
Thanks for taking the Weird Quotient test
Your score is:
89
Of all the weird test takers:
73% are more weird,
10% are just as weird, and
18% are more normal than you!
For your hard work, here is a prize:
To place this image on your web page; select, copy and paste this code to your page:
Wednesday, January 26, 2005
Progress Noted in odd measures
Today was a bit odd. I went back to the orthopedic doctor to find out the results of my MRI on my knee. It was, as I suspected, the second my knee hit the ground on December 17, in need of surgery. The conversation that took place around the need for that surgery is what has caught my thoughts today. Over the last 15 years, I have been in the hospital 22 times, 12 of those times for surgery. I have NOT been in the hospital since June of 2003. (also a surgery) For all my past surgeries, the doctors have said "this is what's wrong, this is what we need to do" and I've scheduled the surgery. Period. This time ... I stared at the doctor and said "BUT I DON'T HAVE TIME FOR SURGERY!!" He then looked at me a bit surprised and said "A myasthenic with lupus should not BE too busy have surgery! Too weak yes, too tired yes, too scared, yes, too ill, yes ... lots of reasons, but not too busy!" Later, as I thought about it, I always FEEL terrible but I also always push to the maximum of my ability to function ..sometimes that's simply laying on the couch, other days that's vegging out in front of the puter, but other days it's running errands, going to doctor appointments, volunteering at church, going to church, small group, friends ... etc ... I push ... full steam ahead, and I have to measure what I accomplish to tell me how I'm REALLY doing ... because a myasthenic pushed to the max isn't going to feel good ... but I'm doing a lot ... I'm too busy for surgery! HEY WORLD!!!! I'm TOO BUSY FOR SURGERY!!!!! THAT'S A GOOD THING!! Ok, so the surgery STILL has to take place, but ... I am going to go through a few weeks of physical therapy and see if we can get the knee a bit stronger before going into surgery so it will recover faster ...cause I have things to do .. places to go .. .pleople to see!! I never thought I'd be so tickled at being told I needed surgery in my life! Don't want the surgery ..dreading that part ... but the fact that I'm too busy just has me giggling! The times of being so weak, worn out that my days are being spent unable to do anything but lay on the couch and sit at the computer as the MAIN event of my life seem to be behind me. They happen every month ... most of the time, I have at least one day a week like that ... but it's no longer my version of normal ... my version of normal is that I'M TOO BUSY TO HAVE SURGERY!!!! WHOO HOO!!!!!
Tuesday, January 25, 2005
Sigh ....
Pearls and Dreams
Sigh ... Lisa is back from Jury duty ... 3 months without having gone to see my nutritionist, 2 months since seeing the therapist ... all that's gone on and I am seeing BOTH today ... UGH. Then Habitat for Humanity class tonight.
Long day. 2 hours sleep last night. I wonder if my lack of sleeping last night had anything to do with knowing I had to see both L&L today?
Sigh ... Lisa is back from Jury duty ... 3 months without having gone to see my nutritionist, 2 months since seeing the therapist ... all that's gone on and I am seeing BOTH today ... UGH. Then Habitat for Humanity class tonight.
Long day. 2 hours sleep last night. I wonder if my lack of sleeping last night had anything to do with knowing I had to see both L&L today?
Monday, January 24, 2005
Saturday, January 22, 2005
The first time I experienced confusion
Last year, I was reading one of Dr. Phil's books. Don't remember which one for sure, I think it was "Self Matters". He has you pin point certain points in your life and tells a story of when Oprah first realized that she was smart and that it made a difference for her. For me, it was a light bulb moment. Tonight, watching a re run of Everybody Loves Raymond, I was reminded of reading that book, and having that memory and what it revealed to me. It was the first time I really remember being confused. I was in my kindergarten classroom, I was the youngest in the class, and had missed the cut off day by only 9 days. California, back then (don't know how it is now) had a cutoff for kindergarten of being 5 by December 1, and my birthday was November 21. So, 9 days later, and I wouldn't have been able to start that year. I was plenty smart enough, though. I was the only kid in the class that could count to 100. The school had a kindergarten/1st grade library and a 'big kids library'. I was the only kid in the whole kindergarten first grade that was allowed to go to the 'big kids library' to check out books because I could read all the books in our kindergarten/first grade library. I could spell, and had a speller, none of the other kindergarten kids did. I was writing little stories with my drawings, when the other kids were drawing pictures and drawing a single letter to represent their picture (A is for Apple and I'd write "The bird ate the worm in the apple because it was easier than getting the worm from the ground.") But I was also extremely active, and other than Harold, I had no friends. I couldn't seem to get a long with anyone, everyone made me cry every day. The teacher was always telling me to sit down, or sit still, or to put both feet on the floor, or to do my own work and not my neighbors ... and that's what the meeting was for that afternoon. The teacher said that I wasn't mature enough to keep up with the class. I can remember my mom crying, and I can hear my step dad's voice saying "we understand" I can't picture him there, so I must have been sitting in his lap. The teacher and my mom explained to me that I needed another year to 'grow up' so I'd be going to pre school for another year & come back to kindergarten the next year when I was a bit older. I can remember the room spinning, it really seemed to be moving in and out of focus ... and it looked like I was suddenly in a place I'd never seen before. I had no idea what they meant, all I could think of was "But you're supposed to learn how to count in school, I can count, you're supposed to learn how to spell in school and I can spell" They were telling me that it didn't matter, my being smart didn't matter, my not being able to sit still was more important and said more about me than how smart I was. My inability to sit still was important. Being smart wasn't. For the rest of my life, that seemed to set the tone ... my intelligence didn't ever seem to cut me a break, it always seemed to make a difference that I couldn't sit still ..that I was socially inept ... So, today, I was watching Everybody loves Raymond as they talked about holding back one of the twins in preschool ... and my heart broke ... I had to make that choice for my son, so I know what my parents went through. I tend to blame my health and social status on my lack of being anything ... but the truth is ... in the back of my head is this little 5 year old girl saying ... but it doesn't matter ... you still can't sit still, so it doesn't matter how smart you are ...
Thursday, January 20, 2005
Lupus clotting problem, evidently not my problem! Thank God!!!!!!!!!!!!!!!
I had to go to see my doctor today because I couldn't breath through my nose or hear through my stuffled up ears. She said the labs hadn't been there, but when she saw I was coming in, she called for them.I had a normal test for tha anticoagulant. She called my rhuemy to tell him and see if he wants me retested. He said it's good to know, go ahead and start the Avista, he said that he HAS seen the clotting problem with just Anti ds DNA but it's far more common if the RO antibody or another one that has slipped my mind is involved. Since I don't have those, he's not overly concerned. He said given my history, it IS something that needs to stay on the radar screen, but he really thinks that it's not the problem. He thinks my mid pregnancy loss and the blood clot with the life port had more to do with my hypermobile joints and a collegen deficiency (which has nothing to do with lupus ... I was born that way). SOOOOO He agreed with my doctor that it should have been tested by the first rheumy, and it should never ever be off the radar screen because of my history, but he thinks we can stick it on the back burner. He is planning on re doing full lupus panel at some point this year to compare with the lower dose of Cellcept, the off the cellcept and now the higher dose of cellcept with prednisone, and it will get retested then. Sooooo and my neuro said weakness or not, statins are ok to use, it might flare my MG a bit, but take it easy, take more symptom medication and PAY ATTENTION. (what? who? Me? not pay attention? )
Wednesday, January 19, 2005
Any thoughts?
Pearls and Dreams
Ok any blog experts ... any ideas why my blogging goes down below instead of to the side of my sidebar?
My friend Deneice (The Journey) was kind enough to fix it as much as she could, bringing my weather pixie and blog rolling up to the top) but the posts are still down below & neither one of us could figure that one out. If you have any ideas ... please leave a comment!
Ok any blog experts ... any ideas why my blogging goes down below instead of to the side of my sidebar?
My friend Deneice (The Journey) was kind enough to fix it as much as she could, bringing my weather pixie and blog rolling up to the top) but the posts are still down below & neither one of us could figure that one out. If you have any ideas ... please leave a comment!
Tuesday, January 18, 2005
Needle Torture & I was right after all!!!
I just got back from being poked like crazy from the neurologist. Yikes. First thing it showed is that I have Myasthenia Gravis (no kidding? I think my neurologist was a bit frustrated by that, hoping that even though I still have quite a few symptoms every day, that it wouldn't be detectible on an EMG, and it was rather prominent ... normal response would be they electricute the nerve and the muscles contract at 320, second time would react at 275 to 360, with MG it's going to be 250 or below. Mine was 80, and all the muscles were showing that big of a second reaction, sooooo ...) but on the nerves, which is what he was checking, it showed exactly what I thought was wrong to begin with and was the reason I hadn't bothered to complain to any of my doctors! It's lupus. There is inflamation in the nerves and it's causing the numbness. No permanent damage, if the inflamation goes away, the feeling should come back. It's mild/moderate and the worst that can happen is some mild discomfort (no pain) and some minor coordination problem ... well, that's IT ... that's all that's happened. It's mildly annoying, and it's making signing difficult, but I don't know that there is a VISIBLE change in my signing, it just FEELS different, I have to work at signing instead of it flowing naturally. He says it SHOULDN'T worse, but it could. But he said that when I said "See the EMG was a waste of time and needle pokes" he said that "no, we need this as a baseline on the very small chance it worsens"
So, all the needle pokes did was tell me that I have myasthenia gravis and lupus in my central nervous system ... which, is 2 things I already knew!
At anyrate, it is GOOD news that the nerves are NOT damaged, that it's NOT peripheral neuropathy from the metabolic disorder and that it probably will just be an annoyance and CAN go away if the lupus gets better.
Now if I can just get my over all sed rate down ..maybe that will help the inflammation in the nerves to decrease.
Thanks for the prayers.
Pk
So, all the needle pokes did was tell me that I have myasthenia gravis and lupus in my central nervous system ... which, is 2 things I already knew!
At anyrate, it is GOOD news that the nerves are NOT damaged, that it's NOT peripheral neuropathy from the metabolic disorder and that it probably will just be an annoyance and CAN go away if the lupus gets better.
Now if I can just get my over all sed rate down ..maybe that will help the inflammation in the nerves to decrease.
Thanks for the prayers.
Pk
Monday, January 17, 2005
Needle Phobia
Pearls and Dreams
Yikes, tomorrow, I am going into the doctor to get an EMG done. I've had EMG's before, but I was so sick at the time, I barely remember them.
I was also so weak, I could not brush my own hair and had to have help to walk ... undiagnosed myasthenia gravis ... and now, well, I'm diagnosed, treated and significantly stronger.
So ... I'm concerned. I've heard so much about how painful these tests are. They've never been painful to me before, but I also didn't have enough strength to kill a flea! So, if my muscle's actually contract with the electrical current ..will it hurt like everyone says? Or did they just not hurt me because I have a high pain tolerance???
I'm also a bit nervous about the results ... is the numbness in my hands and feet a simple pinched nerve that can be fixed with physical therapy, bracing, etc? Maybe even some surgery? Or do I have permanent nerve damage and peripheral neuropathy and this is just the beginning? Is this related to the lupus? To the insulin resistance? Is it a side effect of the drugs I take? Is it because I have hypermobile joints?
I'm also wondering how long today's labs will take to get back, they tested me for the lupus anticoagulant problem. If it's called anticoagulant ..then why is it a blood clotting problem???? I thought you GIVE anti coagulants for blood clots? I'm so confused!!!
I see my nuttritionist on Thursday, I'm dredding the appointment. Discussing my food limitations, that are not my disorder ... lupus sores and insulin resistance and a 310 cholesterol ... crud, now that I finally don't have a bunch of self imposed rules ... I have medically imposed food rules!
Yikes, tomorrow, I am going into the doctor to get an EMG done. I've had EMG's before, but I was so sick at the time, I barely remember them.
I was also so weak, I could not brush my own hair and had to have help to walk ... undiagnosed myasthenia gravis ... and now, well, I'm diagnosed, treated and significantly stronger.
So ... I'm concerned. I've heard so much about how painful these tests are. They've never been painful to me before, but I also didn't have enough strength to kill a flea! So, if my muscle's actually contract with the electrical current ..will it hurt like everyone says? Or did they just not hurt me because I have a high pain tolerance???
I'm also a bit nervous about the results ... is the numbness in my hands and feet a simple pinched nerve that can be fixed with physical therapy, bracing, etc? Maybe even some surgery? Or do I have permanent nerve damage and peripheral neuropathy and this is just the beginning? Is this related to the lupus? To the insulin resistance? Is it a side effect of the drugs I take? Is it because I have hypermobile joints?
I'm also wondering how long today's labs will take to get back, they tested me for the lupus anticoagulant problem. If it's called anticoagulant ..then why is it a blood clotting problem???? I thought you GIVE anti coagulants for blood clots? I'm so confused!!!
I see my nuttritionist on Thursday, I'm dredding the appointment. Discussing my food limitations, that are not my disorder ... lupus sores and insulin resistance and a 310 cholesterol ... crud, now that I finally don't have a bunch of self imposed rules ... I have medically imposed food rules!
Sunday, January 16, 2005
Pearls and Dreams
Pearls and Dreams
Somebody PLEASE take my email away from me!!!
I keep emailing my pastor and his wife, and as a result, get pulled in front of the church!!!
I had emailed my pastor this last week about Benjamin being able to read his new Bible and how much it meant to him. I get up yesterday to a message on my answering machine from my pastor "Peggikaye, would you please come up during the sermon when I call you and share your story of your daily Bible reading with the boys and Benjamin's reaction to his new Bible"
ARGH!
I could say no. But. Then he'd call me in for a meeting wanting to know why I was trying to pull back into my box.
I like being annonymous and staying in the music office behind the scenes, and my pastor and his wife are determined that while I have a definite place in the music office, I have more of a purpose than that ...
I also am going to be taking a LEADERSHIP Bible study coarse ... nothing major (I hope!) but once a month, Bible study on leadership within the church, with the Pastor and the board of trustee's and other ministry team representatives.
I've had a hard time making that choice, it means missing worship team practice. But as the only worship team member who actually COULD miss practice, I kind of feel like I have to be there, and my pastor's wife wouldn't make the choice for me. My pastor was cute when I said I was torn between the two (Don't you DARE tell my wife it's my fault you're missing practice!). I finally decided, that ... it's once a month. I'll go this month, Sunday the youth is leading praise and worship ... so worship team will only be working on new music, nothing really for me to do but to sit there and listen ... well, one song I have to learn to sign to, but I can learn that in a week or two, so missing one week won't matter. So, I'll take advantage of it being this week and then decide the rest of the year from there.
I still would rather stuff myself back in my nice little comfortable little box!
Somebody PLEASE take my email away from me!!!
I keep emailing my pastor and his wife, and as a result, get pulled in front of the church!!!
I had emailed my pastor this last week about Benjamin being able to read his new Bible and how much it meant to him. I get up yesterday to a message on my answering machine from my pastor "Peggikaye, would you please come up during the sermon when I call you and share your story of your daily Bible reading with the boys and Benjamin's reaction to his new Bible"
ARGH!
I could say no. But. Then he'd call me in for a meeting wanting to know why I was trying to pull back into my box.
I like being annonymous and staying in the music office behind the scenes, and my pastor and his wife are determined that while I have a definite place in the music office, I have more of a purpose than that ...
I also am going to be taking a LEADERSHIP Bible study coarse ... nothing major (I hope!) but once a month, Bible study on leadership within the church, with the Pastor and the board of trustee's and other ministry team representatives.
I've had a hard time making that choice, it means missing worship team practice. But as the only worship team member who actually COULD miss practice, I kind of feel like I have to be there, and my pastor's wife wouldn't make the choice for me. My pastor was cute when I said I was torn between the two (Don't you DARE tell my wife it's my fault you're missing practice!). I finally decided, that ... it's once a month. I'll go this month, Sunday the youth is leading praise and worship ... so worship team will only be working on new music, nothing really for me to do but to sit there and listen ... well, one song I have to learn to sign to, but I can learn that in a week or two, so missing one week won't matter. So, I'll take advantage of it being this week and then decide the rest of the year from there.
I still would rather stuff myself back in my nice little comfortable little box!
Saturday, January 15, 2005
I took my mom to the afterhours clinic today. She has this awful staff infection in the cartilage of her ear. It's swollen and painful, and it's blocking the eustacian tube and she can't hear real well through it. But I was struck by a woman, while waiting. She had her teenaged daughter in there with a fever. The doctor was saying it's a low fever, and probably a virus, nothing much to do. The mother was hysterical. Yelling at the doctor to fix her baby. Her 'baby' was 16 or 17 years old, and the doctor was saying that 101 just isn't that high of a fever. It's high enough to not feel good, but it's not a dangerous temperature. The mother was inconsolible. They finally got her to leave, sobbing. I had to go tot he bathroom, and happened to walk out into the lobby as they were leaving. The mother helped the daughter (who didn't appear to need much help) into the very nice shiney mercedes benz convertible. The mother with her obviously designer purse, got onto the cell phone and started to call someone bawling into the phone that she was taking her daughter to the ER because the afterhours clinic was content with letting her daughter die.
I was fascinated by this. She's dressed to the nines on a saturday afternoon, he daughter in designer clothes and shoes. Fancy car, fancy purse and a demand for perfection treatment.
Suddenly, being constantly sick, living under the poverty level and not being on the top end of societies social totem pole, didn't seem like such a raw deal.
I can deal with life. Fevers of 101 don't throw me. Fevers of 105 don't throw me!! I communicate well with doctor's because I understand their jargon and I get it. I have struggled enough that some things that seem dramatic to others, is par for the coarse for me. There is something to be said for that.
I wouldn't want to be soo protected, that a little puff of wind blows me off coarse!
I was fascinated by this. She's dressed to the nines on a saturday afternoon, he daughter in designer clothes and shoes. Fancy car, fancy purse and a demand for perfection treatment.
Suddenly, being constantly sick, living under the poverty level and not being on the top end of societies social totem pole, didn't seem like such a raw deal.
I can deal with life. Fevers of 101 don't throw me. Fevers of 105 don't throw me!! I communicate well with doctor's because I understand their jargon and I get it. I have struggled enough that some things that seem dramatic to others, is par for the coarse for me. There is something to be said for that.
I wouldn't want to be soo protected, that a little puff of wind blows me off coarse!
Friday, January 14, 2005
Pearls and Dreams
Pearls and Dreams
http://www.boston.com/business/articles/2005/01/13/cholesterol_drug_may_sell_over_the_counter/
Federal advisers today and tomorrow will consider whether the Food and Drug Administration should approve Merck & Co.'s bid to make Mevacor the first of a class of hot-selling cholesterol-lowering drugs called statins to be sold over the counter.
My comments :
My uncle, a pharmacist, started taking a statin drug. A few weeks later, he was having weakness and pain, but somehow, didn't associate it with the drug. A few days after the pain started, he recieved a Christmas card from me. My christmas card said nothing imparticular, but because it came from me, it set off alarm bells in my uncle's brain. I have Myasthenia Gravis, the card from me, triggered thinking about my health ..which in turn ..made him think about his weakness and then a light went off in his brain and he called his doc and said he was stopping the statin drug.
This was a PHARMACIST who'd been a pharmacist for over 40 years! And a GOOD one.
How many people would take this drug and have the rare muscle problem and not have a niece with MG that can trigger the necessary train of thought to realize it's harming them?? While the statistics for this complication are rare now, if it goes OTC and people take it without Dr's RX ..would it STAY rare?
Just as a side ... I started to take the statin this last November. Warned, by my neuro, my PCP and my PCP's nurse, and reminded AGAIN in writing when I picked up the sample, that my risk for problems was high. I started taking it a week before Thanksgiving. The next Tuesday, my former PT called me and said "why in the world are you so out of breath?!" He was very alarmed. I hadn't realized I was, and made something up real quick about having had to rush to the phone. I did NOT connect it to the drug. The day after Thanksgiving going to Walmart, I felt like I was walking through jello, a lady asked me about sizing on clothing, and asked me if I had asthma because I was so short of breath. I walked out of the mens department and fell when the carpet changed to tile. I had to have help getting up. That's when I finally realized ... um ...my MG was NOT tolerating the statin drug.
I've had MG for 15 years, dx'd for almost 13. I was a new patient educator for our MG foundation for 3 years. I've also got Lupus and asthma and a whole host of things. I'm experienced and I know my body, I know my disease and I know the risks and I DIDN'T CATCH IT!
Going over the counter with one of these drugs ... they think they're getting sued (growl, shouldn't be happening) now ... they do this, and they will get sued like crazy ... and then, it just may be justified!!
http://www.boston.com/business/articles/2005/01/13/cholesterol_drug_may_sell_over_the_counter/
Federal advisers today and tomorrow will consider whether the Food and Drug Administration should approve Merck & Co.'s bid to make Mevacor the first of a class of hot-selling cholesterol-lowering drugs called statins to be sold over the counter.
My comments :
My uncle, a pharmacist, started taking a statin drug. A few weeks later, he was having weakness and pain, but somehow, didn't associate it with the drug. A few days after the pain started, he recieved a Christmas card from me. My christmas card said nothing imparticular, but because it came from me, it set off alarm bells in my uncle's brain. I have Myasthenia Gravis, the card from me, triggered thinking about my health ..which in turn ..made him think about his weakness and then a light went off in his brain and he called his doc and said he was stopping the statin drug.
This was a PHARMACIST who'd been a pharmacist for over 40 years! And a GOOD one.
How many people would take this drug and have the rare muscle problem and not have a niece with MG that can trigger the necessary train of thought to realize it's harming them?? While the statistics for this complication are rare now, if it goes OTC and people take it without Dr's RX ..would it STAY rare?
Just as a side ... I started to take the statin this last November. Warned, by my neuro, my PCP and my PCP's nurse, and reminded AGAIN in writing when I picked up the sample, that my risk for problems was high. I started taking it a week before Thanksgiving. The next Tuesday, my former PT called me and said "why in the world are you so out of breath?!" He was very alarmed. I hadn't realized I was, and made something up real quick about having had to rush to the phone. I did NOT connect it to the drug. The day after Thanksgiving going to Walmart, I felt like I was walking through jello, a lady asked me about sizing on clothing, and asked me if I had asthma because I was so short of breath. I walked out of the mens department and fell when the carpet changed to tile. I had to have help getting up. That's when I finally realized ... um ...my MG was NOT tolerating the statin drug.
I've had MG for 15 years, dx'd for almost 13. I was a new patient educator for our MG foundation for 3 years. I've also got Lupus and asthma and a whole host of things. I'm experienced and I know my body, I know my disease and I know the risks and I DIDN'T CATCH IT!
Going over the counter with one of these drugs ... they think they're getting sued (growl, shouldn't be happening) now ... they do this, and they will get sued like crazy ... and then, it just may be justified!!
Thursday, January 13, 2005
I DID IT!!!!!!!!!!!!!!!!!!!!!!!!!!
I have links to other blogs at the bottom of this blog!!!!!!
It's only taken me 3 months to figure it out! BUT I DID IT!!!!!!!
Thanks to help from others, especially D ...
Sorry that you have to scroll clear down to the bottom, but bottom is better than nowhere!!!!!
I DID IT!!!!!!!!!
I have links to other blogs at the bottom of this blog!!!!!!
It's only taken me 3 months to figure it out! BUT I DID IT!!!!!!!
Thanks to help from others, especially D ...
Sorry that you have to scroll clear down to the bottom, but bottom is better than nowhere!!!!!
I DID IT!!!!!!!!!
Elephants Galore!
Pearls and Dreams
I went into the classroom, and the kids were all sitting in a circle. The teacher was just telling them that I was coming. She had them go to their desks. I went to the front and started to talk. I told them that I wasn't a lot older than they were when I started to collect. I then pulled out the sharks cartilege carving! ( I really wish I could figure out how to get pics on this blog!!!) They were really fascinated. One boy who was obviously the "Big man on campus/macho macho man" and he was all OOOHH COOL, showing off at how gruesome it must have been. When the carving got to him, he felt it, and got grossed out LOL he quickly handed it off to his neighbor and then just kept trying to shrug off the heebeegeebee's. So much for macho LOL They all really liked all the elephants, had a lot of good questions. We talked about elephants traveling in herds, the females are cows, males are bulls and the babies are calves. We talked about the difference between an Indian and African Elephant. One girl asked me how old I was, which really unerved the teacher. But she said "well, she said that she had been collecting since she was about 10, so if she's 40 then she's been collecting for 30 years!" The teacher was still telling her it wasn't polite, I was tickled to see her doing the math! I guess that's my years of homeschooling. I went to get my MRI done and they said it'd take about 15 to 20 min. But then they had to get an extra view and it wound up taking a whole 45 min. UGH. I find out 2 weeks from today I think, what the results are. Next Tuesday is my EMG to find out what the numbness and tingling is all about ... oh fun, stick a needle in my nerves and jolt it with electricity! That's my idea of fun ... NOT!!!!!!!
I went into the classroom, and the kids were all sitting in a circle. The teacher was just telling them that I was coming. She had them go to their desks. I went to the front and started to talk. I told them that I wasn't a lot older than they were when I started to collect. I then pulled out the sharks cartilege carving! ( I really wish I could figure out how to get pics on this blog!!!) They were really fascinated. One boy who was obviously the "Big man on campus/macho macho man" and he was all OOOHH COOL, showing off at how gruesome it must have been. When the carving got to him, he felt it, and got grossed out LOL he quickly handed it off to his neighbor and then just kept trying to shrug off the heebeegeebee's. So much for macho LOL They all really liked all the elephants, had a lot of good questions. We talked about elephants traveling in herds, the females are cows, males are bulls and the babies are calves. We talked about the difference between an Indian and African Elephant. One girl asked me how old I was, which really unerved the teacher. But she said "well, she said that she had been collecting since she was about 10, so if she's 40 then she's been collecting for 30 years!" The teacher was still telling her it wasn't polite, I was tickled to see her doing the math! I guess that's my years of homeschooling. I went to get my MRI done and they said it'd take about 15 to 20 min. But then they had to get an extra view and it wound up taking a whole 45 min. UGH. I find out 2 weeks from today I think, what the results are. Next Tuesday is my EMG to find out what the numbness and tingling is all about ... oh fun, stick a needle in my nerves and jolt it with electricity! That's my idea of fun ... NOT!!!!!!!
Pearls and Dreams
Pearls and Dreams
It is FINALLY thursday morning! Yipee! I'm so excited, I don't leave for an hour, but I'm ready to go now! LOL
I have all the elephants packed and pictures of the ones I'm not taking.
I can't wait to see my girl! She is going to just be on top of the world that I am there and I am so glad to have a part in sharing this for her!
I'll post how it goes when I get back, I have to go from there to get an MRI done on my knee to find out if my fall just bruised and popped out the kneecap or if it tore some stuff in there.
He seems to think it's a 'surgical knee' :( soooo this will make knee surgery #3 UGH.
But I won't know for 2 weeks.
Ok ... off to find a cup of coffee before going to share my elephants with my friends daughter's class!!!
It is FINALLY thursday morning! Yipee! I'm so excited, I don't leave for an hour, but I'm ready to go now! LOL
I have all the elephants packed and pictures of the ones I'm not taking.
I can't wait to see my girl! She is going to just be on top of the world that I am there and I am so glad to have a part in sharing this for her!
I'll post how it goes when I get back, I have to go from there to get an MRI done on my knee to find out if my fall just bruised and popped out the kneecap or if it tore some stuff in there.
He seems to think it's a 'surgical knee' :( soooo this will make knee surgery #3 UGH.
But I won't know for 2 weeks.
Ok ... off to find a cup of coffee before going to share my elephants with my friends daughter's class!!!
Wednesday, January 12, 2005
Where are you from?
HEY! THERE HOW ARE YOU!!!
Do I have your attention? Still with me? Really? OK, here's why I'm writing all this ... please leave a comment box and tell me where you are reading this from? What Country/state/region. Also, how did you find my blog? And have you checked out blog explosion? If not, why not? Like I said in yesterday's post, just check out the link at the VERY bottom of my blog ... Get Mikey! He'll try it! (what commercial was that for?)
Do I have your attention? Still with me? Really? OK, here's why I'm writing all this ... please leave a comment box and tell me where you are reading this from? What Country/state/region. Also, how did you find my blog? And have you checked out blog explosion? If not, why not? Like I said in yesterday's post, just check out the link at the VERY bottom of my blog ... Get Mikey! He'll try it! (what commercial was that for?)
Tuesday, January 11, 2005
Blog Explosion.
Pearls and Dreams
I am having soo much fun at blog explosion!!
I have a link down at the bottom of my blog flashing Blog explosion ... click on it, check it out. Join, it's free!
I checked it out and thought, what the heck, I've had sooo much fun there.
Very very interesting!
I am having soo much fun at blog explosion!!
I have a link down at the bottom of my blog flashing Blog explosion ... click on it, check it out. Join, it's free!
I checked it out and thought, what the heck, I've had sooo much fun there.
Very very interesting!
Monday, January 10, 2005
Thursday Won't Get Here Fast Enough!
I am really looking forward to Thursday Morning. My friend Cindy has a nine year old daughter. I'm going to her school. For my 40th birthday, my friend Ronda had given me this BEAUTIFUL carving of elephant train (about 2 feet long) from sharks cartilege for my elephant collection. Well, my friends daughter doesn't have very many friends. She is in a new school, and very bright, ADHD and the kids just don't want to let her in. If they'd give her a chance, they'd find she's wonderful!
So, she goes to school and tells them about my elephant carving. The kids start to call her a liar, that there is no way they made a carving out of sharks cartilege and no one could collect elephants. So, I asked my friend if she thought the school would let me come and show n tell the carving.
The teacher is excited, my friend's daughter is excited, I can barely stand it ! I can't WAIT!!
I was hoping they'd schedule me right before lunch, and I'd have lunch with her, but they did it first thing in the morning. Oh well.
I'm taking the Sharks cartilege, my soap stone elephant, my water buffalo horn and a white quartz, and one made from sea shell. Plus some pictures of my whole collection.
I wish I could post them here, but I haven't figured out how to do the picture thing. I've tried, it just won't let me!
So, she goes to school and tells them about my elephant carving. The kids start to call her a liar, that there is no way they made a carving out of sharks cartilege and no one could collect elephants. So, I asked my friend if she thought the school would let me come and show n tell the carving.
The teacher is excited, my friend's daughter is excited, I can barely stand it ! I can't WAIT!!
I was hoping they'd schedule me right before lunch, and I'd have lunch with her, but they did it first thing in the morning. Oh well.
I'm taking the Sharks cartilege, my soap stone elephant, my water buffalo horn and a white quartz, and one made from sea shell. Plus some pictures of my whole collection.
I wish I could post them here, but I haven't figured out how to do the picture thing. I've tried, it just won't let me!
Saturday, January 08, 2005
Living with Lupus
Pearls and Dreams
Living with lupus.
Hard thing.
Suffering with lupus, that's a given.
Being afraid with lupus, that happens.
Sleeping with lupus, that'd be nice, if I could get past the pain to get a good nights sleep.
But LIVING with lupus?
I had plans for today. I was soo excited. I've planned on this since September. I was going to have an Arbonne party. Arbonne is a skin care product ... and it's the only thing that's helped my lupus skin ..well, Arbonne in conjunction with oral prednisone and topical steroid cream, stop any one of the 3 and bam, my skin doesn't like me again.
Arbonne is expensive stuff ..well, sort of, it's expensive in the outlay ... but not so much in the long run. I was paying $7 a month to get lotion from Walmart ... Nutragenia ... Big bottle,and I was using the whole bottle a month. I got a 24 oz bottle in December 2003 from Arbonne, and I still have an ounce or two left. It cost $24. A little over 3 months worth of Nutragenia and it was paid for!!! BUT, having the $24 to put out, when you live on disability is a problem. So, I was going to have a party, then I'd get the hosting cost and free products from sales.
But ... lupus got in the way. I'm flaring badly, pleurisy, my fingers are swollen, my lower back is hurting, the costrochondritis ..geesh, I can't even turn without feeling like someone is punching me in the chest!! My elbows feel like they are on fire, and my feet feel like they're in ice. Add to that, I'm dizzy and my head hurts and we have a full blown lupus flare!
It's a weekend, I could go to the ER, but, they'd just say "yep, it's a lupus flare" and send me home. Funny, docs, always want you to go get help when you need it, rheumy's, neuro's, ortho's they all say "when you get that bad, don't wait, go get help" then you go the ER and the ER says "we can't do anything for you, we're not a chronic illness care center" and they're NOT.
When my MG flares, yea, I'll go running to the ER because I could go into respiratory distress. But my lupus? I have no organ involvement (well, discounting the skin stuffs) so what are they supposed to do? Tell me my sed rate is high ? DUH.
I'm taking prednisone 5mgs, Cellcept 3000mgs, Celebrex 400 mgs, and Ultracet. There really isn't anything anyone can do besides those! Yea, they could give me vicodin, but an ER doc isn't going to give someone they're not familiar with a narcotic for a lupus flare!! (and I'm not sure how I feel about that, part of me agree's, I've known a drug seeker, part of me disagrees today cause I'm hurting so badly) My PCP is out of town, so I can't call her to get something.
So, I rest, play on line so that I'm not up and around doing things around the house that need to be done ... and ... wonder how long this flare lasts. Wonder what caused it ... was it the drastic weather changes? 14º less than 48 hours ago, with freezing rain, and today's high is supposed to be 55. The last 3 Thursday's have been DRAMATICALLY different 3º two weeks ago, 73º last a week ago, and 17º two days ago. Ever since getting sick, my body has not done well with drastic weather changes (so Why am I living in Oklahoma????) Is this flare because I'm fighting pneumonia and it's not getting better? Is this flare because I'm fighting pneumonia and I've tried to go on with life as normal this week? Or is it because the medications they've given me FOR the pneumonia aren't too good for lupus? Why is the lupus flaring SO badly and the MG is at a pretty typical icky ucky not breathing too great but other than that, I just feel my normal weak muscle's?
Most of all
I'm mad because I am missing out on living a life that most people don't even think twice about. I wanted to have that party today.
Living with lupus.
Hard thing.
Suffering with lupus, that's a given.
Being afraid with lupus, that happens.
Sleeping with lupus, that'd be nice, if I could get past the pain to get a good nights sleep.
But LIVING with lupus?
I had plans for today. I was soo excited. I've planned on this since September. I was going to have an Arbonne party. Arbonne is a skin care product ... and it's the only thing that's helped my lupus skin ..well, Arbonne in conjunction with oral prednisone and topical steroid cream, stop any one of the 3 and bam, my skin doesn't like me again.
Arbonne is expensive stuff ..well, sort of, it's expensive in the outlay ... but not so much in the long run. I was paying $7 a month to get lotion from Walmart ... Nutragenia ... Big bottle,and I was using the whole bottle a month. I got a 24 oz bottle in December 2003 from Arbonne, and I still have an ounce or two left. It cost $24. A little over 3 months worth of Nutragenia and it was paid for!!! BUT, having the $24 to put out, when you live on disability is a problem. So, I was going to have a party, then I'd get the hosting cost and free products from sales.
But ... lupus got in the way. I'm flaring badly, pleurisy, my fingers are swollen, my lower back is hurting, the costrochondritis ..geesh, I can't even turn without feeling like someone is punching me in the chest!! My elbows feel like they are on fire, and my feet feel like they're in ice. Add to that, I'm dizzy and my head hurts and we have a full blown lupus flare!
It's a weekend, I could go to the ER, but, they'd just say "yep, it's a lupus flare" and send me home. Funny, docs, always want you to go get help when you need it, rheumy's, neuro's, ortho's they all say "when you get that bad, don't wait, go get help" then you go the ER and the ER says "we can't do anything for you, we're not a chronic illness care center" and they're NOT.
When my MG flares, yea, I'll go running to the ER because I could go into respiratory distress. But my lupus? I have no organ involvement (well, discounting the skin stuffs) so what are they supposed to do? Tell me my sed rate is high ? DUH.
I'm taking prednisone 5mgs, Cellcept 3000mgs, Celebrex 400 mgs, and Ultracet. There really isn't anything anyone can do besides those! Yea, they could give me vicodin, but an ER doc isn't going to give someone they're not familiar with a narcotic for a lupus flare!! (and I'm not sure how I feel about that, part of me agree's, I've known a drug seeker, part of me disagrees today cause I'm hurting so badly) My PCP is out of town, so I can't call her to get something.
So, I rest, play on line so that I'm not up and around doing things around the house that need to be done ... and ... wonder how long this flare lasts. Wonder what caused it ... was it the drastic weather changes? 14º less than 48 hours ago, with freezing rain, and today's high is supposed to be 55. The last 3 Thursday's have been DRAMATICALLY different 3º two weeks ago, 73º last a week ago, and 17º two days ago. Ever since getting sick, my body has not done well with drastic weather changes (so Why am I living in Oklahoma????) Is this flare because I'm fighting pneumonia and it's not getting better? Is this flare because I'm fighting pneumonia and I've tried to go on with life as normal this week? Or is it because the medications they've given me FOR the pneumonia aren't too good for lupus? Why is the lupus flaring SO badly and the MG is at a pretty typical icky ucky not breathing too great but other than that, I just feel my normal weak muscle's?
Most of all
I'm mad because I am missing out on living a life that most people don't even think twice about. I wanted to have that party today.
Blogger Number 5, I love Serving
Pearls and Dreams
I was supposed to pull music on Wednesday, but an ice storm prevented me from doing so. Yesterday, I was too cold and had a migraine. So today, I went, walked into the office, and the church secretary, and the volunteer were there, laughing, obviously working hard. The Volunteer (going to call her L from here on out) was working with a cast on. A few weeks ago, while fixing the christmas decorations, L fell down the balcony stairs and broke her elbow. L is in her 70's, but I dare any 30 year old to keep up with her!
I went into the music office and all last Sunday's music had been filed by L. I stood there and shook my head, smiling at what an incredible woman she is. What would I do without her? (music would stack up and I'd be forever lost in a pile of sheet music and no one would ever see me again!!) So, I pull out the files and I'm praying over Sunday's service and how the songs are going to reach the people. But every file I touch, I realize that L is going to be putting it back, with love, and kindness and gentleness (and organizational skills that I'm terribly lacking!) and the heart of a servant.
L is always at the church when I'm there. When she's not there, she's at the special needs school my son went to for kindergarten. (The Little Light House in Tulsa Oklahoma) working with kids who got an unfair start in life. She's the treasurer for the church, she works on the newsletter,she fixes my messes, and when I have a huge stack of music to give to the singers, she punches holes in it because my hands hurt too much to do it and she understands.
I briefly thought, what makes L different than so many Martha's that run around the churches of America? What is so different about this little powerball of a woman? What is it about her that makes it so obvious that every bit of service is being done while sitting at the feet of Jesus?
Prayer. A simple word. But it envades everything L does or says. Her life is bathed in prayer. When you ask her to pray, she WILL. It's a guarentee. Whenever there is prayer mentioned, she's the first one there ready to show up and offer her heart for Jesus.
I love to serve. Someone asked me what my love language was. I've never read the book, or taken the test, but I pretty much guarentee you, it's servanthood. So that's what I answered. You know I love you, because I made your favorite dinner. You know I care because you said you liked the dish I made for the church potluck, and I brought it again, just for you. You know that I am thinking about you, because I saw you crying, and I brought you a kleenex.
Working on my habitat hours, I worked at house site and was informed that I had 'irrevocably spoiled the work crews'. I'd done what I thought they wanted me to do, and it turned out to be way above and beyond what they'd intended for me to do. I loved it! I was thrilled with the description. I have decided that it is my goal to let people see the Jesus in me by 'irrevocably spoiling' them!
I love serving in the worship ministry. I can't sing anymore. My health has taken that from me, I can't depend on the muscles to work well enough to control my voice, thanks to the MG. Lupus has effected my vocal chords and sometimes my voice sounds rather rough and hoarse. But ... I love what I do. I make sure that all the singers have the music they need for practice. During practice if our worship leader realizes she needs something, I jump up to get it so that practice does not have to be interrupted. I make sure all the instrumentalists have all the music they need. (for one man, that's not an easy job, I think he's only playing 6 instruments now!) I put it in their folders, and I make sure it's in the order that they will be playing it on Sundays. I don't know what I do that makes it right ..but they do. They make sure I know they appreciate me and that I make a difference.
A little over a month ago, our worship leader, knowing I wasn't feeling well, called me and asked me for something, she felt awful asking me because she knew I was sick, but she said "you've got us so spoiled you haven't done us any favors! We can't replace you! you're the only one that can do your job!"
Ok, so maybe no one should be THAT irreplaceable ... it throws a wrench into things when you get sick or break your arm. But when you're serving from a heart that is seated at Jesus' feet ... it sure feels wonderful to know that as much as you love serving, you're making a difference!
I was supposed to pull music on Wednesday, but an ice storm prevented me from doing so. Yesterday, I was too cold and had a migraine. So today, I went, walked into the office, and the church secretary, and the volunteer were there, laughing, obviously working hard. The Volunteer (going to call her L from here on out) was working with a cast on. A few weeks ago, while fixing the christmas decorations, L fell down the balcony stairs and broke her elbow. L is in her 70's, but I dare any 30 year old to keep up with her!
I went into the music office and all last Sunday's music had been filed by L. I stood there and shook my head, smiling at what an incredible woman she is. What would I do without her? (music would stack up and I'd be forever lost in a pile of sheet music and no one would ever see me again!!) So, I pull out the files and I'm praying over Sunday's service and how the songs are going to reach the people. But every file I touch, I realize that L is going to be putting it back, with love, and kindness and gentleness (and organizational skills that I'm terribly lacking!) and the heart of a servant.
L is always at the church when I'm there. When she's not there, she's at the special needs school my son went to for kindergarten. (The Little Light House in Tulsa Oklahoma) working with kids who got an unfair start in life. She's the treasurer for the church, she works on the newsletter,she fixes my messes, and when I have a huge stack of music to give to the singers, she punches holes in it because my hands hurt too much to do it and she understands.
I briefly thought, what makes L different than so many Martha's that run around the churches of America? What is so different about this little powerball of a woman? What is it about her that makes it so obvious that every bit of service is being done while sitting at the feet of Jesus?
Prayer. A simple word. But it envades everything L does or says. Her life is bathed in prayer. When you ask her to pray, she WILL. It's a guarentee. Whenever there is prayer mentioned, she's the first one there ready to show up and offer her heart for Jesus.
I love to serve. Someone asked me what my love language was. I've never read the book, or taken the test, but I pretty much guarentee you, it's servanthood. So that's what I answered. You know I love you, because I made your favorite dinner. You know I care because you said you liked the dish I made for the church potluck, and I brought it again, just for you. You know that I am thinking about you, because I saw you crying, and I brought you a kleenex.
Working on my habitat hours, I worked at house site and was informed that I had 'irrevocably spoiled the work crews'. I'd done what I thought they wanted me to do, and it turned out to be way above and beyond what they'd intended for me to do. I loved it! I was thrilled with the description. I have decided that it is my goal to let people see the Jesus in me by 'irrevocably spoiling' them!
I love serving in the worship ministry. I can't sing anymore. My health has taken that from me, I can't depend on the muscles to work well enough to control my voice, thanks to the MG. Lupus has effected my vocal chords and sometimes my voice sounds rather rough and hoarse. But ... I love what I do. I make sure that all the singers have the music they need for practice. During practice if our worship leader realizes she needs something, I jump up to get it so that practice does not have to be interrupted. I make sure all the instrumentalists have all the music they need. (for one man, that's not an easy job, I think he's only playing 6 instruments now!) I put it in their folders, and I make sure it's in the order that they will be playing it on Sundays. I don't know what I do that makes it right ..but they do. They make sure I know they appreciate me and that I make a difference.
A little over a month ago, our worship leader, knowing I wasn't feeling well, called me and asked me for something, she felt awful asking me because she knew I was sick, but she said "you've got us so spoiled you haven't done us any favors! We can't replace you! you're the only one that can do your job!"
Ok, so maybe no one should be THAT irreplaceable ... it throws a wrench into things when you get sick or break your arm. But when you're serving from a heart that is seated at Jesus' feet ... it sure feels wonderful to know that as much as you love serving, you're making a difference!
Thursday, January 06, 2005
Ice storms
Pearls and DreamsTulsa Woman, Four Daughters, Killed In Wednesday Morning Crash
Tulsa - Wednesday's weather conditions contributed to a fatal accident that claimed the life of a Tulsa woman and her four children. Shanna Tottress was taking her four daughters to school. Now, a family grieves for a mother and her four little girls who had so much life ahead of them.
The Lincoln Town Car sat at the side of Highway 51 in Wagoner County in pieces of twisted metal. Behind these images we now know a young mother was driving a path she knew well.
"She was taking them to school," said Tottress' sister Kristy Harris. "Just like she did every morning, just day to day routine."
But, Harris later learned this day would be anything but routine for her sister and four nieces.
"I was on my lunch break. My husband called me at work. When I got the news. And it was just a shock."
The car hit wet pavement, spun out of control, and into on-coming traffic. Killed in the crash were 28-year old Shanna Tottress, and her babies 15-year-old Tatiana, 13-year old Tashay, 8-year old Jonet and 5-year old Ebony.
"Pretty, pretty girls. Very special, very lighthearted, very loving," Harris said.
A sister stands in disbelief and feels for a father who lost his wife and four babies.
"It just kinda blindsided us," she says. "Just wasn't expecting it. I just need everyone's prayers, just pray."
Right now, they are trying to help set up a fund to help the family pay for funeral expenses.
************************************************
That's just one of the news story's (channel 8, KTUL.COM) of traffic deaths from our ice storm today.
I hate ice. It covers everything, and it's slick and cold and it is dangerous. It doesn't descriminate at who it hurts. The rich are just as likely to have their power wiped out by the ice as the poor. The Poor mans car is just as likely as the rich mans to go spinning out of control into another's ...
Water pipes burst ...
It hurts to be this cold. My joints won't cooperate. I have trouble with extreme temperatures, the lupus and MG doesn't do well. What's worse than extremes, are extreme changes ... Right now it's 18º. Last thursday, the high was 73º The Thursday before, it was 3º . That's some pretty rapid changes, with pretty extreme swings ... not only does the lupus not do well, but with being on immunosuppression medications, my immune system doesn't hold up well ... monday the doc insisted on delivering a nebulizer to my home. :( I've always managed to wiggle out of that one, not this time.
Taking breathing treatments ... not sure they're helping. I'll give it till tomorrow, my docs out of town, but if I'm not doing better, I'll go see her partner so I don't go into the weekend ...
Sigh ...
wish I was feeling profound tonight. Maybe tomorrow ....
Tulsa - Wednesday's weather conditions contributed to a fatal accident that claimed the life of a Tulsa woman and her four children. Shanna Tottress was taking her four daughters to school. Now, a family grieves for a mother and her four little girls who had so much life ahead of them.
The Lincoln Town Car sat at the side of Highway 51 in Wagoner County in pieces of twisted metal. Behind these images we now know a young mother was driving a path she knew well.
"She was taking them to school," said Tottress' sister Kristy Harris. "Just like she did every morning, just day to day routine."
But, Harris later learned this day would be anything but routine for her sister and four nieces.
"I was on my lunch break. My husband called me at work. When I got the news. And it was just a shock."
The car hit wet pavement, spun out of control, and into on-coming traffic. Killed in the crash were 28-year old Shanna Tottress, and her babies 15-year-old Tatiana, 13-year old Tashay, 8-year old Jonet and 5-year old Ebony.
"Pretty, pretty girls. Very special, very lighthearted, very loving," Harris said.
A sister stands in disbelief and feels for a father who lost his wife and four babies.
"It just kinda blindsided us," she says. "Just wasn't expecting it. I just need everyone's prayers, just pray."
Right now, they are trying to help set up a fund to help the family pay for funeral expenses.
************************************************
That's just one of the news story's (channel 8, KTUL.COM) of traffic deaths from our ice storm today.
I hate ice. It covers everything, and it's slick and cold and it is dangerous. It doesn't descriminate at who it hurts. The rich are just as likely to have their power wiped out by the ice as the poor. The Poor mans car is just as likely as the rich mans to go spinning out of control into another's ...
Water pipes burst ...
It hurts to be this cold. My joints won't cooperate. I have trouble with extreme temperatures, the lupus and MG doesn't do well. What's worse than extremes, are extreme changes ... Right now it's 18º. Last thursday, the high was 73º The Thursday before, it was 3º . That's some pretty rapid changes, with pretty extreme swings ... not only does the lupus not do well, but with being on immunosuppression medications, my immune system doesn't hold up well ... monday the doc insisted on delivering a nebulizer to my home. :( I've always managed to wiggle out of that one, not this time.
Taking breathing treatments ... not sure they're helping. I'll give it till tomorrow, my docs out of town, but if I'm not doing better, I'll go see her partner so I don't go into the weekend ...
Sigh ...
wish I was feeling profound tonight. Maybe tomorrow ....
Saturday, January 01, 2005
Pearls and Dreams
Pearls and Dreams
Test test test ... I did my top 5 blogger idol's and I can't find them ... sigh ...
Test test test ... I did my top 5 blogger idol's and I can't find them ... sigh ...
Pearls and Dreams
Pearls and Dreams
Ok, I'm not good at doing this, Last week, I could not pick a top 5 ..so I just let it slide this week, I was tempted to put them all down ... because I liked them all ... I also can't seem to get the links to work when i try to put them on here ...growl, I'm so inept at these things!
So ... here goes, in no particular order ...
1. Unorderd ... Watch and See. I love the idea of waiting to see what God will do, I'm a real Martha personality ... when I need to be more of a Mary personality ... I need to remember to spend more time practicing the art of " Be Still and Know That I am God"
http://www.wibsite.com/wiblog/unordered/read.php?7537
2. Biscotti Brain ... Hard thinking is good!
http://biscotti_brain.blogspot.com/2004/12/i-resolve.html
3. Swade ... Anyone that puts giving their wife a massage, gets my vote!
http://redinterior.typepad.com/red_interior/2004/12/blogger_idol_we.html
4 A Dervish's Du'a' ...if you can figure out how to get up before sunrise AND be joyous ... tell me how!!!!!
http://www.maryams.net/dervish/archives/000262.html
5. Jesslin ... More of grace ... I like that.
http://jesslin.com/blog/2004/12/unexpected-end.html
Ok, I'm not good at doing this, Last week, I could not pick a top 5 ..so I just let it slide this week, I was tempted to put them all down ... because I liked them all ... I also can't seem to get the links to work when i try to put them on here ...growl, I'm so inept at these things!
So ... here goes, in no particular order ...
1. Unorderd ... Watch and See. I love the idea of waiting to see what God will do, I'm a real Martha personality ... when I need to be more of a Mary personality ... I need to remember to spend more time practicing the art of " Be Still and Know That I am God"
http://www.wibsite.com/wiblog/unordered/read.php?7537
2. Biscotti Brain ... Hard thinking is good!
http://biscotti_brain.blogspot.com/2004/12/i-resolve.html
3. Swade ... Anyone that puts giving their wife a massage, gets my vote!
http://redinterior.typepad.com/red_interior/2004/12/blogger_idol_we.html
4 A Dervish's Du'a' ...if you can figure out how to get up before sunrise AND be joyous ... tell me how!!!!!
http://www.maryams.net/dervish/archives/000262.html
5. Jesslin ... More of grace ... I like that.
http://jesslin.com/blog/2004/12/unexpected-end.html
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