Each year when we go on Appalachia Service Project mission trip, we plan some sort of song to introduce ourselves to the other groups. We've used tunes from pop, country, and once even the theme from Gilligan's Island. Other teams do the same, and it breaks the ice on the first night when three or four churches from different states are coming together to do home repairs for folks who can't afford to do it themselves.
Last week I got a song stuck in my head (thanks to Babygirl's Glee reruns). But it was a good, rhythmic song to walk to, and while I was walking I started a rewrite for our next mission trip. It's totally silly, and my apologies to Katy Perry.
I Fixed A Roof
This is not what I had planned
(I hate heights, I'm not good at ladders!).
What are these tools here in my hand?
I've never used a drill or a hammer!
It's not what I'm used to
Just had to climb right on
It's curious what I'll do
With the right intentions!
I fixed a roof and I liked it
to keep someone warmer, safer, dryer!
I fixed a roof just to try it
I hope ASP will like it!
It seemed so wrong, and felt so right
I think I'll sleep good tonight.
I fixed roof and I liked it - I liked it!
This mountain fell into their yard
now you give me a post hole digger!
I have never worked so hard
could railroad ties be bigger?
It's not what I'm used to
Just had to pile it on
It's curious what I'll do
With that big sledgehammer!
But I built a wall and I liked it
to keep someone warmer, safer, dryer!
I dug a ditch and I liked it
muddy, sweaty, hot and dehydrated.
It felt so wrong, but it seemed so right
I'm sure I'll sleep great tonight!
I built a wall and I liked it - I liked it!
Mission work is so magical
We help, they know God loves them so!
Hard to resist all those Devos...
I ran out of steam here. I'll post in on the mission team site and take my lumps about the horrible meter and bad rhyme. But it took me outside myself and made me remember our friends in West Virginia. With all the snow from Hurricane Sandy I'm guessing we'll have a lot of roofs to fix.
DeeDee
Friday, November 9, 2012
Thursday, November 8, 2012
Week Eighty-one - Redefining Eternity....
As we continue the countdown to Monday's upcoming visit with the headache specialist, I begin to understand the concept of eternity.
Eternity exists outside of time. My clocks still tick of seconds and minutes, and they are all theoretically of the same length, one compared to another. But think about how time passes while you sleep. There is very little sense of time passing, yet you fall asleep in one day and wake up in another.
This wait is the opposite of that. Watching your child suffer takes you outside of time and into a new, eternal dimension that makes each second expand exponentially into something that touches on forever. Everytime I see those sunglasses, time slows, and slows, and slows. We go through what is now a nearly daily routine - check temperature, check blood pressure, use the one-to-ten pain scale to evaluate neck and head pain. I check for true signs of meningitis DAILY, and sometimes more than three times in a day. It makes me late for work. It makes my heart pause whenever my phone rings. It makes me crazed and fearful. It makes me feel helpless, and alone.
Babygirl and I have more or less reached a point of apathy. We go through the motions, take medications, push fluids and rest. And we wait.
Four more days.
Perhaps Hell is like this. Eternal helplessness. Eternal anxiety. Eternal loss of hope. We don't need real flames to feel the burn.
DeeDee
Eternity exists outside of time. My clocks still tick of seconds and minutes, and they are all theoretically of the same length, one compared to another. But think about how time passes while you sleep. There is very little sense of time passing, yet you fall asleep in one day and wake up in another.
This wait is the opposite of that. Watching your child suffer takes you outside of time and into a new, eternal dimension that makes each second expand exponentially into something that touches on forever. Everytime I see those sunglasses, time slows, and slows, and slows. We go through what is now a nearly daily routine - check temperature, check blood pressure, use the one-to-ten pain scale to evaluate neck and head pain. I check for true signs of meningitis DAILY, and sometimes more than three times in a day. It makes me late for work. It makes my heart pause whenever my phone rings. It makes me crazed and fearful. It makes me feel helpless, and alone.
Babygirl and I have more or less reached a point of apathy. We go through the motions, take medications, push fluids and rest. And we wait.
Four more days.
Perhaps Hell is like this. Eternal helplessness. Eternal anxiety. Eternal loss of hope. We don't need real flames to feel the burn.
DeeDee
Wednesday, November 7, 2012
Grateful for Freedom...
I'm incredibly grateful that I live in this country. For all of our flaws, it remains, and will remain, the best place in the world to live. Despite the incredibly divisive pre-election craziness, I have nothing but good thoughts about the future of our nation.
For the record, I voted for President Obama (for the second time). I clearly have a lot at stake. Without the Affordable Health Care Act, Babygirl's future is even more uncertain that it currently is. My work serving the poor is more promising in this environment. I'm not looking for Platinum Card Club/first-class-seat medical care for everybody. But there should be room in coach for everybody. Heck, I'll settle for Greyhound care as a basic start.
I'm hoping for a gentler, more tolerant future for my kids. As a child who had to learn that the N-word was not appropriate anymore, I want my kids to learn that the F-word ('faggot!") is not appropriate either. I want equal rights for everybody. I want my 20-somethings to have a chance at decent work for a living wage.
I pray that both political sides of our nation come together to work for the common good.
DeeDee
For the record, I voted for President Obama (for the second time). I clearly have a lot at stake. Without the Affordable Health Care Act, Babygirl's future is even more uncertain that it currently is. My work serving the poor is more promising in this environment. I'm not looking for Platinum Card Club/first-class-seat medical care for everybody. But there should be room in coach for everybody. Heck, I'll settle for Greyhound care as a basic start.
I'm hoping for a gentler, more tolerant future for my kids. As a child who had to learn that the N-word was not appropriate anymore, I want my kids to learn that the F-word ('faggot!") is not appropriate either. I want equal rights for everybody. I want my 20-somethings to have a chance at decent work for a living wage.
I pray that both political sides of our nation come together to work for the common good.
DeeDee
Sunday, November 4, 2012
Lazy and Peaceful.....
It's nice to have a Sunday with nothing really to do. After Sunday school and church I came home and changed into my jammies. Oh, I did a couple of loads of wash, and paid a couple of bills, but mostly I sat reading and snacking (and at least some of it was fruit LOL). A couple of glasses of wine finished my evening.
Citygirl is here and she did all of the cooking yesterday for a nice family dinner, and there is chicken soup simmering on the stove for anyone who wants something nutritious to eat - I made Babygirl go outside and pull up some carrots for the soup earlier.
Today's headache was a kinder, gentler headache. It started early in the morning and went away in less than two hours by itself. Here's hoping the steroids have kicked in and we'll have a more peaceful week. I'm crossing finger and toes and lighting a candle. (I probably should have done all of that in the other order.)
Eight days until neurology give us an opinion.
DeeDee
Citygirl is here and she did all of the cooking yesterday for a nice family dinner, and there is chicken soup simmering on the stove for anyone who wants something nutritious to eat - I made Babygirl go outside and pull up some carrots for the soup earlier.
Today's headache was a kinder, gentler headache. It started early in the morning and went away in less than two hours by itself. Here's hoping the steroids have kicked in and we'll have a more peaceful week. I'm crossing finger and toes and lighting a candle. (I probably should have done all of that in the other order.)
Eight days until neurology give us an opinion.
DeeDee
Saturday, November 3, 2012
Curing Migraine....
Two years ago when my migraines suddenly took over my life, I got a LOT of suggestions for things that would improve the situation. Now that Babygirl is riding in the same boat (I HOPE it's the same boat - I really don't want anything worse than migraine!) I am getting a ton more.
I'll do my best to cover some ground here.
First, I DO believe in massage, manipulation, chiropractic care and so on. I have had manipulations done while I was having migraines. It worked beautifully. But it didn't stop the headaches from coming back, and it is not a skill a lot of people have. Massage is wonderful, but for me it tends to accentuate an active headache, and it's difficult for me to assess whether it decreases frequency.
With Babygirl, treatments that involve having someone touch her are difficult. As a toddler we discovered that she as some Sensory Integration Dysfunction. She was extremely sensitive to clothing, shoes, socks and so on. I think her current love of skinny jeans stems from the fact that they apply even pressure from her waist to her ankles, no tickly flapping material. She wears fairly tight camisoles under her tops, and I think for the same reason. She is so severely ticklish that CHOP anaesthesia has made note of it. She requires extra sedatives for procedures because touching her belly makes her pull up her knees and giggle, even when heavily sedated. She HATES back rubs, pedicures and shampoos at the hair salon. However effective these treatments might be for her, she cannot, oddly, tolerate them.
Various herbs and natural products have been suggested. Because her anti-rejection medications have many, many interactions with other drugs (and potentially with food, IE grapefruit, and herbs) we have been advised to not allow her to use them. Topical peppermint oil seems to make her worse, while it seems to make me feel better.
Someone suggested sports drinks like Gatorade to help increase potassium. Usually her diet is fairly potassium-rich, and her blood tests always show her potassium levels to be at the higher end of normal. But we are also forbidden to use sports drinks. The salt/sugar/potassium combo is not at all good for people with kidney disease. It is true that hydrating her helps the headaches get better. We use water, dilute iced tea (wouldn't be my first choice but it is hers), and low-salt chicken or beef broth.
As for the list of suggested "It might not be migraine ask the doctors about this instead" idea, I have made a list. I have, banging around inside my head, my own paranoid and worrisome list. Frankly, it's times like these when it truly, truly stinks to be a doctor.
There's a saying in medicine: "When you hear the sound of thundering hooves, you should picture horses, not zebras." For example, a patient in my office who is coughing is far more likely to have asthma than a lung parasite. That being said, I've had the patient with the lung parasite. Zebras seem to rampage through my office, and we aren't surprised anymore by the occasional pygmy hippopotamus.
My head is full of zebras, a few Tommy gazelles and a river full of hippopotami. Babygirl already possesses one zebra disease. This time I want a horse. Migraine would work for me. That, at least, won't endanger her life any further than the zebra she's already riding.
DeeDee
I'll do my best to cover some ground here.
First, I DO believe in massage, manipulation, chiropractic care and so on. I have had manipulations done while I was having migraines. It worked beautifully. But it didn't stop the headaches from coming back, and it is not a skill a lot of people have. Massage is wonderful, but for me it tends to accentuate an active headache, and it's difficult for me to assess whether it decreases frequency.
With Babygirl, treatments that involve having someone touch her are difficult. As a toddler we discovered that she as some Sensory Integration Dysfunction. She was extremely sensitive to clothing, shoes, socks and so on. I think her current love of skinny jeans stems from the fact that they apply even pressure from her waist to her ankles, no tickly flapping material. She wears fairly tight camisoles under her tops, and I think for the same reason. She is so severely ticklish that CHOP anaesthesia has made note of it. She requires extra sedatives for procedures because touching her belly makes her pull up her knees and giggle, even when heavily sedated. She HATES back rubs, pedicures and shampoos at the hair salon. However effective these treatments might be for her, she cannot, oddly, tolerate them.
Various herbs and natural products have been suggested. Because her anti-rejection medications have many, many interactions with other drugs (and potentially with food, IE grapefruit, and herbs) we have been advised to not allow her to use them. Topical peppermint oil seems to make her worse, while it seems to make me feel better.
Someone suggested sports drinks like Gatorade to help increase potassium. Usually her diet is fairly potassium-rich, and her blood tests always show her potassium levels to be at the higher end of normal. But we are also forbidden to use sports drinks. The salt/sugar/potassium combo is not at all good for people with kidney disease. It is true that hydrating her helps the headaches get better. We use water, dilute iced tea (wouldn't be my first choice but it is hers), and low-salt chicken or beef broth.
As for the list of suggested "It might not be migraine ask the doctors about this instead" idea, I have made a list. I have, banging around inside my head, my own paranoid and worrisome list. Frankly, it's times like these when it truly, truly stinks to be a doctor.
There's a saying in medicine: "When you hear the sound of thundering hooves, you should picture horses, not zebras." For example, a patient in my office who is coughing is far more likely to have asthma than a lung parasite. That being said, I've had the patient with the lung parasite. Zebras seem to rampage through my office, and we aren't surprised anymore by the occasional pygmy hippopotamus.
My head is full of zebras, a few Tommy gazelles and a river full of hippopotami. Babygirl already possesses one zebra disease. This time I want a horse. Migraine would work for me. That, at least, won't endanger her life any further than the zebra she's already riding.
DeeDee
Friday, November 2, 2012
What I Learned In the ER.....
This morning, more of what we've gotten sadly used to - a bad headache, nausea, light and sound sensitivity, and the added bonus, neck stiffness and pain. I gave Babygirl her headache meds and called CHOP, getting the same on-call nephrologist I got last week.
Like me, she's concerned about the neck pain. It's not a typical migraine symptom, and it's a new player in this game. She called neurology. They can't move up her appointment. She advised me to take Babygirl to the local Emergency Room to try, once again, to break the headache, and to have them call neurology for further advice.
Sigh. But if you ask a question of an expert, you can't always expect to get an answer that you like. And generally, you are a fool if you disregard such advice. So we went.
To give our ER as much credit as possible, I have to say they were overwhelmed. We went to a room pretty quickly, but I could hear, over and over and over again, overhead pages asking the doctors to take calls from incoming ambulances. And what I heard wasn't "We're coming in with some moron with an ankle sprain" but "we have an 82 year old with a heart rate of 160 and dizziness."
We had an awesome nurse. She's the same one who rode all the way to CHOP with us in an ambulance last spring. The doc, not so much. He popped in, barely stayed long enough for me to point out that yes, it was only a headache, but the nephrologist told us to come in because of the neck symptoms and that she recommended imaging of Babygirl's neck.
I don't think the imaging she was hoping for was a simple neck x-ray, but that's what we got. I'm guessing she was hoping for a view or two of the spinal cord, but hey. We were there from before 9 AM until 3:30 PM. She got IV meds shortly before 11, more than an hour after we were told that that was what the plan was. We were discharged without being told the results of bloodwork or xrays. I cried in front of the nurses and got ugly with the doctor.
So what I learned in the ER this morning is that I'm not going back. I'm not asking again until I see the neurologist ten (LONG) days from now what it is that is causing this pain, or what anyone plans to do about it. I'll give her the meds we have, keep her home from school if she has a headache, and ask everyone I know to pray for us both.
DeeDee
Like me, she's concerned about the neck pain. It's not a typical migraine symptom, and it's a new player in this game. She called neurology. They can't move up her appointment. She advised me to take Babygirl to the local Emergency Room to try, once again, to break the headache, and to have them call neurology for further advice.
Sigh. But if you ask a question of an expert, you can't always expect to get an answer that you like. And generally, you are a fool if you disregard such advice. So we went.
To give our ER as much credit as possible, I have to say they were overwhelmed. We went to a room pretty quickly, but I could hear, over and over and over again, overhead pages asking the doctors to take calls from incoming ambulances. And what I heard wasn't "We're coming in with some moron with an ankle sprain" but "we have an 82 year old with a heart rate of 160 and dizziness."
We had an awesome nurse. She's the same one who rode all the way to CHOP with us in an ambulance last spring. The doc, not so much. He popped in, barely stayed long enough for me to point out that yes, it was only a headache, but the nephrologist told us to come in because of the neck symptoms and that she recommended imaging of Babygirl's neck.
I don't think the imaging she was hoping for was a simple neck x-ray, but that's what we got. I'm guessing she was hoping for a view or two of the spinal cord, but hey. We were there from before 9 AM until 3:30 PM. She got IV meds shortly before 11, more than an hour after we were told that that was what the plan was. We were discharged without being told the results of bloodwork or xrays. I cried in front of the nurses and got ugly with the doctor.
So what I learned in the ER this morning is that I'm not going back. I'm not asking again until I see the neurologist ten (LONG) days from now what it is that is causing this pain, or what anyone plans to do about it. I'll give her the meds we have, keep her home from school if she has a headache, and ask everyone I know to pray for us both.
DeeDee
Thursday, November 1, 2012
Week Eighty - Whining....
Babygirl got a lot of loot last night considering she was really only up for about two blocks of candy looting. But the grandbabies came along, and their inability to go the distance spared me the necessity of making her be the one to "give up."
She awoke this morning because her neck hurt. The light hurt, her head hurt, but her neck was the prize winner this time.
The neck pain frightens me. Truly, truly truly scares the bejeepers out of me. No fever, no blood pressure elevation, no other worrisome signs, lots of very well-trained intelligent people thinking that it ISN'T scary, but my gut disagrees.
I don't deal well with fear. I don't cope with helplessness well. I suck at patient watch-and-wait crap. I hate to see her cry because once again she cannot go to school.
This sucker was still hurting her some when I got home from work. She came with me to get some stuff for supper, and had to shade her eyes when the brake lights on the car in front of us came on, because it hurt.
I spent part of my day determining that the headaches may be aggravated by her Rapamune. That would, indeed, stink. I spent most of the rest of my day whining.
It's not pretty.
DeeDee
She awoke this morning because her neck hurt. The light hurt, her head hurt, but her neck was the prize winner this time.
The neck pain frightens me. Truly, truly truly scares the bejeepers out of me. No fever, no blood pressure elevation, no other worrisome signs, lots of very well-trained intelligent people thinking that it ISN'T scary, but my gut disagrees.
I don't deal well with fear. I don't cope with helplessness well. I suck at patient watch-and-wait crap. I hate to see her cry because once again she cannot go to school.
This sucker was still hurting her some when I got home from work. She came with me to get some stuff for supper, and had to shade her eyes when the brake lights on the car in front of us came on, because it hurt.
I spent part of my day determining that the headaches may be aggravated by her Rapamune. That would, indeed, stink. I spent most of the rest of my day whining.
It's not pretty.
DeeDee
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