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
Sunday, November 4, 2012
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
Wednesday, October 31, 2012
Trick or Treat....
Two years ago, before we knew that Babygirl had no kidney function, was the last time she could have gone trick-or-treating without worrying about following a specific diet. She was stick thin, atheletic, and ate like crazy. I remember, though, that she wasn't feeling well that day, although I can't recall why. We went around the block with my nephew, who was dressed in his finest chain mail, sword in hand (it's some serious chain mail - he's over six feet tall), collected a little candy and came home early.
Last year, (http://kidneedsakidney.blogspot.com/2011/10/week-twenty-eighthappy-halloween.html ) she felt well but wasn't allowed to have much candy.
This year, she has a headache.
It's always been the rule at our house that if you are too sick to attend school, then you are too sick to participate in whatever fun event is on for that evening. If you are sick on Friday, you are too sick to participate in fun events for the entire weekend. None of my kids faked sick more than a couple of days that I know of. And all of my kids had very good attendance records, despite the fact that two other of them besides Babygirl had some pretty significant chronic illnesses.
But what about tonight? She's not sick sick, she's headache sick. The pain will probably be gone by 1 o'clock this afternoon. If we're lucky, the school will send her tutor out after school. So what do I do about the school attendance rule? If the tutor comes, I guess I COULD count that as attending school, right?
This falls into the category of trying not to raise a brat. I don't want her to think that rules don't apply to her just because she's sick a lot, but isn't it essentially true? She exempt from deadlines at school, she's exempt from making up gym classes, everybody bends over backwards for her to help her succeed. And that's as it should be. She's not excused from household chores, and in fact has very little trouble keeping up with her chores because she's home all the time.
But what about this sort of thing? How do I balance this stuff out? Is this a discipline issue? A health issue? A life-is-short-let-her-do-whatevertheheck-she-can issue?
I like to think of myself as a good mom (with, perhaps, the spectacular exception of not noticing that Babygirl was actually ILL and not merely chilly!). But some of these choices just stink. Say yes to the candy bar? Buy the newest gadget? Allow more video games? Let her get away with watching Glee reruns instead of reading? (Sometimes, no, no, yes.)
This is perhaps the second hardest part of parenting a chronically ill child - the first being my helplessness in the face of her suffering. If she were dying, well, heck, give her whatever she wants whenever she wants it. But if I expect her to become a productive adult member of society, I am doing her no favors by letting her think that she can do what she wants, when she wants.
I should have asked her this morning if she really felt bad enough to risk missing trick-or-treating. But it would have been a stupid question. She was wearing sunglasses, gagging on her medications, and refusing to eat. It's reached a point that even with today's complaint of neck pain and stiffness that I know there's no real point in calling anyone - no fever, normal pulse and blood pressure, normal CT scan, and all that - with the addition of a new medication today, doing all we can do. And we know what we need to know.
Except how to stop the headache from coming back.
Screw this. She's trick-or-treating. And if she doesn't feel up to it, she gets first pick of whatever candy we were going to give out.
DeeDee
Last year, (http://kidneedsakidney.blogspot.com/2011/10/week-twenty-eighthappy-halloween.html ) she felt well but wasn't allowed to have much candy.
This year, she has a headache.
It's always been the rule at our house that if you are too sick to attend school, then you are too sick to participate in whatever fun event is on for that evening. If you are sick on Friday, you are too sick to participate in fun events for the entire weekend. None of my kids faked sick more than a couple of days that I know of. And all of my kids had very good attendance records, despite the fact that two other of them besides Babygirl had some pretty significant chronic illnesses.
But what about tonight? She's not sick sick, she's headache sick. The pain will probably be gone by 1 o'clock this afternoon. If we're lucky, the school will send her tutor out after school. So what do I do about the school attendance rule? If the tutor comes, I guess I COULD count that as attending school, right?
This falls into the category of trying not to raise a brat. I don't want her to think that rules don't apply to her just because she's sick a lot, but isn't it essentially true? She exempt from deadlines at school, she's exempt from making up gym classes, everybody bends over backwards for her to help her succeed. And that's as it should be. She's not excused from household chores, and in fact has very little trouble keeping up with her chores because she's home all the time.
But what about this sort of thing? How do I balance this stuff out? Is this a discipline issue? A health issue? A life-is-short-let-her-do-whatevertheheck-she-can issue?
I like to think of myself as a good mom (with, perhaps, the spectacular exception of not noticing that Babygirl was actually ILL and not merely chilly!). But some of these choices just stink. Say yes to the candy bar? Buy the newest gadget? Allow more video games? Let her get away with watching Glee reruns instead of reading? (Sometimes, no, no, yes.)
This is perhaps the second hardest part of parenting a chronically ill child - the first being my helplessness in the face of her suffering. If she were dying, well, heck, give her whatever she wants whenever she wants it. But if I expect her to become a productive adult member of society, I am doing her no favors by letting her think that she can do what she wants, when she wants.
I should have asked her this morning if she really felt bad enough to risk missing trick-or-treating. But it would have been a stupid question. She was wearing sunglasses, gagging on her medications, and refusing to eat. It's reached a point that even with today's complaint of neck pain and stiffness that I know there's no real point in calling anyone - no fever, normal pulse and blood pressure, normal CT scan, and all that - with the addition of a new medication today, doing all we can do. And we know what we need to know.
Except how to stop the headache from coming back.
Screw this. She's trick-or-treating. And if she doesn't feel up to it, she gets first pick of whatever candy we were going to give out.
DeeDee
Tuesday, October 30, 2012
A Little Delay.......
Frankenstorm was kind to us. A few trees and branches here and there, some wandering trash cans, an entirely new and foreign pile of leaves in the backyard.
But it has had some impact on us. We went to the family doc this morning to follow up on our ER visits. The trip was no problem, a little drizzle but the river wasn't too high and the roads were clear. We discussed the ongoing problem, and even though Babygirl awoke without a headache today, he decided to discuss her case with both neurology and nephrology before moving ahead.
He reached the neurologist on call and was told that oral steroids were okay (YAY! The last thing we wanted to do was to try to set up daily IV's at home). They also recommended a low daily dose of topiramate, a seizure medication commonly used to treat migraine. While in the ER we were told that Depakote was the first choice given all her other issues, so doc decided to speak to nephrology before commiting to a new med.
Turns out, CHOP is running on skeleten staff, outpatient visits cancelled, and no one who knows Babygirl in the office. Thinking about it logically, they were almost dead center of the hurricane and not far inland. When you look out of the upper windows at the hospital, you can see both the Delaware and the Schuykill rivers.
Yeah, it might take a minute to get an expert consensus. We'll start the extra steroids tomorrow.
DeeDee
But it has had some impact on us. We went to the family doc this morning to follow up on our ER visits. The trip was no problem, a little drizzle but the river wasn't too high and the roads were clear. We discussed the ongoing problem, and even though Babygirl awoke without a headache today, he decided to discuss her case with both neurology and nephrology before moving ahead.
He reached the neurologist on call and was told that oral steroids were okay (YAY! The last thing we wanted to do was to try to set up daily IV's at home). They also recommended a low daily dose of topiramate, a seizure medication commonly used to treat migraine. While in the ER we were told that Depakote was the first choice given all her other issues, so doc decided to speak to nephrology before commiting to a new med.
Turns out, CHOP is running on skeleten staff, outpatient visits cancelled, and no one who knows Babygirl in the office. Thinking about it logically, they were almost dead center of the hurricane and not far inland. When you look out of the upper windows at the hospital, you can see both the Delaware and the Schuykill rivers.
Yeah, it might take a minute to get an expert consensus. We'll start the extra steroids tomorrow.
DeeDee
Sunday, October 28, 2012
Preparing for the Storm....
Frankenstorm is moving slowly toward us. Predictions have varied widely, and our community, still reeling from last years' flooding, is feeling some fear. Before I left the office Friday they made us get everything up off the floors and bottom shelves. Stores have been crazy. You can't find batteries, propane tanks or generators. I imagine sump pumps are in short supply too. Shopping carts are full of bottled water. I've seen lines at gas stations, and a lot of general crankiness. Considering that a third of our city was evacuated last year, and many people lost their homes and businesses, the fear is completely understandable.
Babygirl and I spent the day raking leaves, taking down the bike shelter and getting bikes and lawn furniture into the basement. While we were at it, we took all the stuff from the basement that is going to the church rummage sale out to the car, and drove it to the church. This was about three hours of intense labor, and we had a good time doing it. I paid her in Dunkin Donuts iced coffee, with a Boston Cream donut thrown in for good measure (two treats that were forbidden on the dialysis diet by the way). Tomorrow I will fill the bathtub so we have water to flush with if the power goes out. We are as prepared as we can be, I suppose.
But there are storms that you can never prepare for, hurricanes of the body and soul that teach you the true meaning of fear. There is nothing short of life itself that we can lose in a storm worse than what we have already lost. And nothing short of miraculous healing can happen better than what we have experienced this year.
Because for every soul-searing loss, there has been a flood of kindness, prayer and support. If ever I wondered if I was loved or cared for, there can be no remaining doubt - I am. If ever I thought to lose faith in the goodness of the people around me, I cannot consider it. And for all my questions about the love and faithfulness of God, I have to trust that it is His hands at work through the people around me. If they love, and are good, and keep faith, then God will do no less.
So if you see me rant at God, ignore it. He does.
DeeDee
Babygirl and I spent the day raking leaves, taking down the bike shelter and getting bikes and lawn furniture into the basement. While we were at it, we took all the stuff from the basement that is going to the church rummage sale out to the car, and drove it to the church. This was about three hours of intense labor, and we had a good time doing it. I paid her in Dunkin Donuts iced coffee, with a Boston Cream donut thrown in for good measure (two treats that were forbidden on the dialysis diet by the way). Tomorrow I will fill the bathtub so we have water to flush with if the power goes out. We are as prepared as we can be, I suppose.
But there are storms that you can never prepare for, hurricanes of the body and soul that teach you the true meaning of fear. There is nothing short of life itself that we can lose in a storm worse than what we have already lost. And nothing short of miraculous healing can happen better than what we have experienced this year.
Because for every soul-searing loss, there has been a flood of kindness, prayer and support. If ever I wondered if I was loved or cared for, there can be no remaining doubt - I am. If ever I thought to lose faith in the goodness of the people around me, I cannot consider it. And for all my questions about the love and faithfulness of God, I have to trust that it is His hands at work through the people around me. If they love, and are good, and keep faith, then God will do no less.
So if you see me rant at God, ignore it. He does.
DeeDee
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