Babygirl has spent today recovering. Headaches and tummy aches off and on with the sniffles that mark the end of the cold that's been riding in the background of the past two weeks. She ate dinner and we're watching some TV, waiting for bedtime.
I spent my day curled up with a book. I couldn't get warm, so I finally got out the heating pad and plugged it in underneath myself while I read. I've been too tired to read, which is very unusual, so I've been stuck on the same page for weeks. It was a relief to finally finish something - an almost overwhelming sense of accomplishment.
I reset my brain with a handful of Sudoku puzzles.
I stopped crying.
It's not much. But it's the best I can do.
I think I'm ready to face the week.
DeeDee
Sunday, October 5, 2014
Saturday, October 4, 2014
Grateful Relief....
On the way into work on Thursday morning I was in a dark place - exhausted, discouraged, sad and hopeless. An optimist by nature, this is a hard place to get to, and I'm so rarely there that I don't have a lot of plans for getting back OUT. I climbed out of my car into a pile of bright yellow leaves and even THAT didn't make me smile. On the way into the building I struggled to find something, ANYthing, I could sincerely and without a trace of snark tell God I was thankful for.
As I contemplated the number of patients I knew were loaded into my schedule against the amount of paperwork backed up on my desk, I rewound the weeks' workload and realized....very few of my scheduled patients had actually kept their appointments.
"No Shows" are a chronic problem in our office. Our patients are poor, mentally ill, careless, overstressed, and overbooked. They run out of minutes, pay their rent ahead of their phones, don't get reminder calls and take extra work hours when they are offered. And sometimes the 'no shows' come in clusters. The only reason I'd been able to manage all Babygirl's phone calls to the school and all her docs was because my patients weren't there.
So I stopped, and said a 'thank you' for the no shows. It wasn't much, but it was, honestly, the best I could do.
Babygirl's neurologist called, concerned about the medications and the kidney. The bottom line is that he doesn't want to be responsible for wiping out her kidney function. He's not. But he's freaked, a little. Nephrology didn't call. The school called. I told them not to send a tutor. Babygirl's still just too sick.
Friday morning, after 24 hours without the lisinopril, Babygirl awakens with a small tummyache and a small headache, overall, an improvement. I asked her if she could handle a tutor and she said yes, so the school sent one over for a couple of hours after school. Nephrology called and said they want the kidney retested Monday, so we won't know if the kidney damage is permanent or temporary until then.
Last night we went out for dinner. Babygirl ate a salad and part of a bowl of soup, the most I've seen her get down at one sitting in over a week. We went to Barnes and Nobles and she bought a Manga, getting into an animated conversation with the sales clerk about his 6-month stay in Japan. It was beautiful, heartbreakingly beautiful, to see.
Crawling up out of any hole takes time. Each battering we take lays open scars laid down by the last one and revives fears barely buried. We keep walking. Falling. Crawling.
Lord, give us the strength to get back up. Again. And again. As many times as it takes.
Amen.
DeeDee
As I contemplated the number of patients I knew were loaded into my schedule against the amount of paperwork backed up on my desk, I rewound the weeks' workload and realized....very few of my scheduled patients had actually kept their appointments.
"No Shows" are a chronic problem in our office. Our patients are poor, mentally ill, careless, overstressed, and overbooked. They run out of minutes, pay their rent ahead of their phones, don't get reminder calls and take extra work hours when they are offered. And sometimes the 'no shows' come in clusters. The only reason I'd been able to manage all Babygirl's phone calls to the school and all her docs was because my patients weren't there.
So I stopped, and said a 'thank you' for the no shows. It wasn't much, but it was, honestly, the best I could do.
Babygirl's neurologist called, concerned about the medications and the kidney. The bottom line is that he doesn't want to be responsible for wiping out her kidney function. He's not. But he's freaked, a little. Nephrology didn't call. The school called. I told them not to send a tutor. Babygirl's still just too sick.
Friday morning, after 24 hours without the lisinopril, Babygirl awakens with a small tummyache and a small headache, overall, an improvement. I asked her if she could handle a tutor and she said yes, so the school sent one over for a couple of hours after school. Nephrology called and said they want the kidney retested Monday, so we won't know if the kidney damage is permanent or temporary until then.
Last night we went out for dinner. Babygirl ate a salad and part of a bowl of soup, the most I've seen her get down at one sitting in over a week. We went to Barnes and Nobles and she bought a Manga, getting into an animated conversation with the sales clerk about his 6-month stay in Japan. It was beautiful, heartbreakingly beautiful, to see.
Crawling up out of any hole takes time. Each battering we take lays open scars laid down by the last one and revives fears barely buried. We keep walking. Falling. Crawling.
Lord, give us the strength to get back up. Again. And again. As many times as it takes.
Amen.
DeeDee
Thursday, October 2, 2014
Bellyaching.....
Babygirl is on the fourth (fifth? it's been such a crappy month that it's beginning to run together) day of this ongoing episode of inexplicable abdominal pain. No fever, no urinary symptoms, one day of vomiting for a couple of hours, some nausea, some weight loss. Just total, ongoing misery.
Recapping her school attendance: Three weeks ago she missed Wednesday through Friday with a severe headache. The week before last she missed Tuesday and Thursday with headache. Last Monday she called Hubby for ride home from school with a headache and stayed home Tuesday through Thursday with more of them, and Friday with a cold. She began having the belly pain Sunday and hasn't been to school all week. We haven't seen a home teacher through all of this.
Yesterday I called the school and spoke to the head of the health office and explained where we were. It was reassuring to hear her utter exasperation when I told her that there was some confusion about how to meet her 504 plan. I think that she will be clearing that up.
I heard from Babygirl's advisor that a tutor was available for the evening, so would I bring her to school for tutoring? Um, no. The kid is sick. Get the tutor to our house, okay? Okay.
I called Nephrology. They reviewed things, heard the story, looked at the dose of the new headache prevention medication (which, at 15 mg twice daily is under the 40 mg/day adult maximum but is more than they usually use in children. Keep in mind, however, that Babygirl is 15 and adult-sized). They ordered STAT blood work (at 4:30 PM, with a tutor scheduled to arrive at the house at 5:30 and me still at work and Bible study scheduled at 6). It turns out that among the rare side effects of this medication (rare indeed since I prescribe this drug all the time for over 25 years and have NEVER seen it) is abdominal pain. Seriously?
Keep in mind that I haven't seen Babygirl for more than the 30 seconds that it took to wake her up and see that she was too sick to go to school at 7 AM, so I really don't know how she is feeling right this minute, right?
I hover over the fax machine, call AGAIN when the fax doesn't come, grab the papers and run. I hustle poor Babygirl to the lab and get her home in time for the tutor to arrive. This lovely young lady has never met Babygirl. She is expecting that Babygirl has some books, or texts, or papers, or SOMETHING for her to start working on. I was told that she was going to be given a packet of work for a couple of Babygirl's elective classes to work on. She had no idea what I was talking about.
She started to see if Babygirl had any grasp of in this year's math - her most difficult subject. She was patient and kind, and in less than ten minutes Babygirl had put her head down and was sobbing. Sometimes you are just too sick to deal with anything, you know? In all of the time we've had tutors, I think this may have been the third time we've had to send one home because she just couldn't manage.
On a happier note, Citygirl wanted me to come and listen to a band that she was thinking of hiring for a party she's planning. I collected myself, got in the car, settled into some very relaxing music with a fruity drink and......
The on-call Nephrologist called. Babygirl's kidney is most unhappy. Her creatinine is up to 1.34 from 0.8 only two weeks ago. Her potassium is high and her bicarbonate is low (lots of acid that the kidney is not getting rid of). Her advice: Stop the new medication, and stop it NOW. I check the time - it's 5 minutes to medication time. I call hubby's phone. No answer. Home phone - same. Babygirl's phone - same. Repeat all four or five times. Finally Babygirl answers, and I tell her, "Dad has to change your medicine. Go tell him to call me." He calls, I tell him, and he says, "But she just took it!"
There is not enough rum and pineapple juice in this world to cope with this, just not enough.
Screw it. There's nothing more I can do about it tonight. I had an appetizer, called it dinner, and enjoyed Citygirl's company and the music, and came home and resorted all the pills.
This morning they will call with a plan.
All of this is overwhelming enough, right? But this is the script that runs in the background of my life. In front of this, I go to work, to the gym, clean my house, spend time with the grandkids, do the grocery shopping, take care of my mom, go to church. Most of the time I don't feel sorry for myself, but last night I just wanted to turn the clock back somehow - but to where? There is no point on that timeline that doesn't bring us back to here, since there is no choice I wouldn't make that would exclude any one of my kids from my life. There really is no 'might have been.' There is only THIS. It's just that watching her suffer is So. Damned. Hard.
Citygirl prayed for us all last night. Something to the effect of, "We know You're taking care of us, but we'd kinda like to see some proof of that...." I'm sure she was more respectful than that. And I'm sure He got the point. And I'm sure I agree.
DeeDee
Recapping her school attendance: Three weeks ago she missed Wednesday through Friday with a severe headache. The week before last she missed Tuesday and Thursday with headache. Last Monday she called Hubby for ride home from school with a headache and stayed home Tuesday through Thursday with more of them, and Friday with a cold. She began having the belly pain Sunday and hasn't been to school all week. We haven't seen a home teacher through all of this.
Yesterday I called the school and spoke to the head of the health office and explained where we were. It was reassuring to hear her utter exasperation when I told her that there was some confusion about how to meet her 504 plan. I think that she will be clearing that up.
I heard from Babygirl's advisor that a tutor was available for the evening, so would I bring her to school for tutoring? Um, no. The kid is sick. Get the tutor to our house, okay? Okay.
I called Nephrology. They reviewed things, heard the story, looked at the dose of the new headache prevention medication (which, at 15 mg twice daily is under the 40 mg/day adult maximum but is more than they usually use in children. Keep in mind, however, that Babygirl is 15 and adult-sized). They ordered STAT blood work (at 4:30 PM, with a tutor scheduled to arrive at the house at 5:30 and me still at work and Bible study scheduled at 6). It turns out that among the rare side effects of this medication (rare indeed since I prescribe this drug all the time for over 25 years and have NEVER seen it) is abdominal pain. Seriously?
Keep in mind that I haven't seen Babygirl for more than the 30 seconds that it took to wake her up and see that she was too sick to go to school at 7 AM, so I really don't know how she is feeling right this minute, right?
I hover over the fax machine, call AGAIN when the fax doesn't come, grab the papers and run. I hustle poor Babygirl to the lab and get her home in time for the tutor to arrive. This lovely young lady has never met Babygirl. She is expecting that Babygirl has some books, or texts, or papers, or SOMETHING for her to start working on. I was told that she was going to be given a packet of work for a couple of Babygirl's elective classes to work on. She had no idea what I was talking about.
She started to see if Babygirl had any grasp of in this year's math - her most difficult subject. She was patient and kind, and in less than ten minutes Babygirl had put her head down and was sobbing. Sometimes you are just too sick to deal with anything, you know? In all of the time we've had tutors, I think this may have been the third time we've had to send one home because she just couldn't manage.
On a happier note, Citygirl wanted me to come and listen to a band that she was thinking of hiring for a party she's planning. I collected myself, got in the car, settled into some very relaxing music with a fruity drink and......
The on-call Nephrologist called. Babygirl's kidney is most unhappy. Her creatinine is up to 1.34 from 0.8 only two weeks ago. Her potassium is high and her bicarbonate is low (lots of acid that the kidney is not getting rid of). Her advice: Stop the new medication, and stop it NOW. I check the time - it's 5 minutes to medication time. I call hubby's phone. No answer. Home phone - same. Babygirl's phone - same. Repeat all four or five times. Finally Babygirl answers, and I tell her, "Dad has to change your medicine. Go tell him to call me." He calls, I tell him, and he says, "But she just took it!"
There is not enough rum and pineapple juice in this world to cope with this, just not enough.
Screw it. There's nothing more I can do about it tonight. I had an appetizer, called it dinner, and enjoyed Citygirl's company and the music, and came home and resorted all the pills.
This morning they will call with a plan.
All of this is overwhelming enough, right? But this is the script that runs in the background of my life. In front of this, I go to work, to the gym, clean my house, spend time with the grandkids, do the grocery shopping, take care of my mom, go to church. Most of the time I don't feel sorry for myself, but last night I just wanted to turn the clock back somehow - but to where? There is no point on that timeline that doesn't bring us back to here, since there is no choice I wouldn't make that would exclude any one of my kids from my life. There really is no 'might have been.' There is only THIS. It's just that watching her suffer is So. Damned. Hard.
Citygirl prayed for us all last night. Something to the effect of, "We know You're taking care of us, but we'd kinda like to see some proof of that...." I'm sure she was more respectful than that. And I'm sure He got the point. And I'm sure I agree.
DeeDee
Tuesday, September 30, 2014
Feeling Poorly.....
No headaches for a couple of days is good news. Having a cold and a belly ache is not so much good news.
Babygirl's last headache was Thursday, I think. The new medication helped, and that was nice. She woke up Friday so stuffy she couldn't breathe and missed school anyway. Saturday was a cough-and-sneeze fest, Sunday a bit better. She went to school yesterday and left early with abdominal pain. By dinner time she was throwing up, and the medications were problematic, but we managed. This morning her stomach still hurts and she's coughing. The meds are in, her temp is 99.2, and I feel like I'm sitting on a ticking time bomb.
Hubby isn't working today, so he can keep an eye on her.
Damn.
DeeDee
Babygirl's last headache was Thursday, I think. The new medication helped, and that was nice. She woke up Friday so stuffy she couldn't breathe and missed school anyway. Saturday was a cough-and-sneeze fest, Sunday a bit better. She went to school yesterday and left early with abdominal pain. By dinner time she was throwing up, and the medications were problematic, but we managed. This morning her stomach still hurts and she's coughing. The meds are in, her temp is 99.2, and I feel like I'm sitting on a ticking time bomb.
Hubby isn't working today, so he can keep an eye on her.
Damn.
DeeDee
Monday, September 29, 2014
Hubby....
Babygirl hasn't been the only one with struggles. Hubby's had back problems for years. He's always been a hard worker, and always worked hard jobs. Last year when he had his appendicitis, the emergency room doctor asked him, "What do you take for your back problems?" It seemed like an odd question for a guy groaning on a gurney with a bellyache, but apparently the CT scan note not only his diseased appendix, but the severe arthritis in his spine.
From then until early this past summer the back pain went from bearable to intolerable. A visit to the family doc resulted in a visit to a neurosurgeon. His news was less than hopeful. Hubby does, indeed, need back surgery - someday. The arthritis is putting pressure on the nerves to his legs, and eventually that pressure will need to be relieved or his legs will weaken. But that surgery will do nothing to relieve the pain in his back.
So....Monday evening we returned to the doctor for the first of what will likely be several epidural injections. It was, from my perspective, a spectacular success. Hubby walked to the car, sat down and closed the door - without having to manually lift his leg in and then spend a few more minutes struggling to reach the door handle. He's been able to walk, exercise and work with FAR less pain.
I don't know how long it will last. But it's been wonderful to see.
DeeDee
From then until early this past summer the back pain went from bearable to intolerable. A visit to the family doc resulted in a visit to a neurosurgeon. His news was less than hopeful. Hubby does, indeed, need back surgery - someday. The arthritis is putting pressure on the nerves to his legs, and eventually that pressure will need to be relieved or his legs will weaken. But that surgery will do nothing to relieve the pain in his back.
So....Monday evening we returned to the doctor for the first of what will likely be several epidural injections. It was, from my perspective, a spectacular success. Hubby walked to the car, sat down and closed the door - without having to manually lift his leg in and then spend a few more minutes struggling to reach the door handle. He's been able to walk, exercise and work with FAR less pain.
I don't know how long it will last. But it's been wonderful to see.
DeeDee
Saturday, September 27, 2014
Proud Moments......
Curlygirl finished her cosmetology program last fall, but her school held graduation for all its graduates from all programs for the entire year last night. I was please and proud to see her walk for her diploma, and even more pleased an proud that she got an honor roll cord and certificate!
It's very nice to switch to tears of joy for a change!
DeeDee
It's very nice to switch to tears of joy for a change!
DeeDee
Thursday, September 25, 2014
Headache Regress.....
I'm beginning to feel as if we are rewinding the fall of 2012. Babygirl's headaches are merciless.
Tuesday I called Neurology again to report a couple of things: 1) In the 11 days since they said they would check with Nephrology, they hadn't - but I had, and the new medication had been approved. 2) That on the second and third day of the steroids Babygirl was doing great, but since then she was having headaches at least every other day, including weekends, and is now back to daily. 3) In the 8 days since I had requested to speak to an office manager, I had yet to receive a call back.
The young lady on the phone was fairly sure she had given me the manager's name and number. I asked her name, and she wasn't even the young lady I'd spoken to (lucky for her LOL) 8 days earlier, but she did go hunt down the manager for me and we had a lovely chat. The office manager began by apologizing for not returning my call, and admitting that THAT, at least, was entirely her fault. I outlined my concerns: No one called me to tell me they were doing nothing and I had to ask for help from the on-call doctor, which delayed Babygirl's treatment, and her front desk staff told me (in a sense) how lucky I was to get a call back at all on a Friday afternoon. The office manager agreed that this was not handled at all well from either perspective but did tell me that I had been sent an email about it all (!). (I don't really check my email much - I later searched among 266 emails and found one with no title that I would have assumed was another Ethiopian Lottery offer. It was a cc telling a nurse that they would have to ask nephrology about the new medication - nothing AT ALL about the ones that didn't get phoned in, and nothing addressed specifically to me except that the nurse was to ask whether or not Babygirl takes her allergy medication every day or not).
The nurse called me back and asked all the same questions from the week before: Has she had IV treatment, how long has she had the headaches, what else has been tried....." Ugh. I updated her on the week. Gave her the dates of current treatment and headache pattern. Lists of what she's taken. Noted that she actually called from school because she needed a ride home because of a headache (first time in two years).
Another call. Same story. But I'm getting better at this. "I know you have to discuss this with the doctor, but here is what you need to ask: Can we start the triptans to treat the headaches? Our insurance for sure pays for Imitrex. And, what are we changing to prevent them?"
So the triptans have been started. Prevention is being re-evaluated. If the triptans don't work, we will be going in for nerve blocks to break the cycle, and then Botox.
Going to check the emergency bag contents.
DeeDee
Tuesday I called Neurology again to report a couple of things: 1) In the 11 days since they said they would check with Nephrology, they hadn't - but I had, and the new medication had been approved. 2) That on the second and third day of the steroids Babygirl was doing great, but since then she was having headaches at least every other day, including weekends, and is now back to daily. 3) In the 8 days since I had requested to speak to an office manager, I had yet to receive a call back.
The young lady on the phone was fairly sure she had given me the manager's name and number. I asked her name, and she wasn't even the young lady I'd spoken to (lucky for her LOL) 8 days earlier, but she did go hunt down the manager for me and we had a lovely chat. The office manager began by apologizing for not returning my call, and admitting that THAT, at least, was entirely her fault. I outlined my concerns: No one called me to tell me they were doing nothing and I had to ask for help from the on-call doctor, which delayed Babygirl's treatment, and her front desk staff told me (in a sense) how lucky I was to get a call back at all on a Friday afternoon. The office manager agreed that this was not handled at all well from either perspective but did tell me that I had been sent an email about it all (!). (I don't really check my email much - I later searched among 266 emails and found one with no title that I would have assumed was another Ethiopian Lottery offer. It was a cc telling a nurse that they would have to ask nephrology about the new medication - nothing AT ALL about the ones that didn't get phoned in, and nothing addressed specifically to me except that the nurse was to ask whether or not Babygirl takes her allergy medication every day or not).
The nurse called me back and asked all the same questions from the week before: Has she had IV treatment, how long has she had the headaches, what else has been tried....." Ugh. I updated her on the week. Gave her the dates of current treatment and headache pattern. Lists of what she's taken. Noted that she actually called from school because she needed a ride home because of a headache (first time in two years).
Another call. Same story. But I'm getting better at this. "I know you have to discuss this with the doctor, but here is what you need to ask: Can we start the triptans to treat the headaches? Our insurance for sure pays for Imitrex. And, what are we changing to prevent them?"
So the triptans have been started. Prevention is being re-evaluated. If the triptans don't work, we will be going in for nerve blocks to break the cycle, and then Botox.
Going to check the emergency bag contents.
DeeDee
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