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.



Monday, September 29, 2014


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.


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!


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.


Saturday, September 20, 2014

The Unmistakable Scent.....

As I was leaving the office the other evening I caught a whiff of it.  It isn't something at all definable, and it is so very, very ephemeral;  but there is no mistaking it once you've learned what it means.  It's the smell of Fall.

In writing letters to our Compassion children, I find myself regularly trying to describe things that they never have seen.  Snow and fall foliage are first among them.  Trying to describe walking on ice to a child who considers 70 degrees a chilly day?  Not a simple thing, and it's easier to describe what we see than what we smell.

Smell is embedded in our memories in a special way.  One cannot describe the smell of skunk, but has no need to do so to one who has already made its acquaintance.


As soon as I said it, all of you who know the smell smelled it in your heads.  It's the forewarning of frost on a warm, clear evening; a foretaste of fallen leaves while surrounded by green; and some yet-to-be-put-into-words breath of the shortening days.

The next morning I pulled out a sweater.  There is no point in arguing that fall didn't really start until today.


Thursday, September 18, 2014

Headache Progress...

Babygirl started a run of high-dose steroids with a taper on Saturday. By Sunday she was feeling very well, and Monday and Tuesday she caught up on things at school.  The missed days at school gave her advisor an idea of why I was so proactive with her the first week.  She has eliminated one of Babygirl's unwanted elective classes to give her a daily study hall at the end of the day.  Her math teacher is meeting with her at lunchtime to help her.  Things appear to be progressing there.

Less encouraging was the headache that she had on Wednesday, while still on the steroid taper.  I took her for her routine kidney blood work on Monday morning, and when the nurse called me with the results in the afternoon, I asked about whether or not she had heard from neurology about the need for a medication change.  She checked the chart and told me there was no message from Neuro. 

I called Neurology on Monday and spoke to the receptionist. I told her that I wanted to speak to someone about: 1) The fact that they said they were going to phone in medications and didn't, and 2) They didn't call me to tell me that they weren't going to do it.  After some back-and-forth, and my usual "Look, I know you aren't the person responsible or at fault but I'd like to talk to THAT person" she informed me (politely and without a trace of malice) that no one was likely responsible or at fault.  After all, I had called Friday at nearly 1 PM and they had returned my call on the same day!  Calls that late frequently aren't returned until Monday!

I don't know about you, but when your kid is suffering, and someone tells you something like that, what you hear is:  "We don't give a flying rats arse about what you and your kid are going through on a Friday. Next time pick a better day for her to get sick, you moron."

At this point I asked for her name, and asked to speak to her manager.  The manager was 'in a meeting' so I left a message for him/her to please call me.  It's Thursday morning now and I've heard nothing.  Oh, and I've heard nothing from Neurology about what they plan to do for Babygirl's headaches.  I left a message with Nephrology late yesterday to let me know if Neuro has gotten around to chatting with them yet.

So, to sum up:  Out of 12 days of school so far, Babygirl has missed four, roughly par for the course for her compared to last year.  Yippee. I have some more phone calls to make.


Wednesday, September 17, 2014

Casual Obscenities.....

As I was walking to my car last night I could hear loud male braggadocio coming from around the corner ahead.  One voice clearly belonged to the leader, and he was proudly proclaiming, "You are my Niggah!" to the less than pleased protests of the rest.  It's a common enough phrase among young black men, and I heard it at home once in a while among the foster kids (which I quickly forbade - the word feels utterly inappropriate to me and appears alarmingly dangerous for a white child to be throwing around, frankly). 

I cleared the corner and was slightly surprised by three twenty-something white men, dressed in 'wife beaters', low pants and visible boxers.  A few paces behind, but clearly part of the group, was a well-groomed, neatly dressed young white woman. 

As I entered the car, the 'leader' of this group of young men began addressing this young woman.  "Hey, My Bitch!" etc.  It was clearly part of an ongoing argument.

Here's the polite translation:

"Yo! My Female Dog! Bring your Rude Female Parts over here NOW and apply oral suction to my Big Richard" (Pointing with both hands in case there was any doubt about where this body part was located). 

She turned around and began walking the other way.

"Yo!  Mother Dog!  The Mother Dog I OWN!  If you don't like it I can find some other Female Dog to force intercourse upon!"

She crosses the street, and he and his moronic minions follow.  By this point I am in my car, doors locked, and ready to U-turn toward home.  I'm tempted to run them down.  I refrain.  In executing my turn I lose sight of the girl, and I'm more than a little concerned about her.  I can see where the men are going and realize that she has gone up a side street.  I consider options, drive ahead and circle the block, coming back around as they are coming up the side street.  By this time, she has crossed THAT street to avoid them and is headed back for the main drag.  The Big Chief Idiot has circled to get in front of her, and the minions are some way behind. 

I roll down my windows, express my opinion of the men's behavior, concern for her safety, and offer her a ride.

She's a little startled.  And clearly puzzled.  She smiled, "I'm safe, don't worry."  And she walked toward her harasser.

Sigh.  I know I'm of a different generation, and likely a different socioeconomic class. And  I freely admit that I cuss, considerably more than I should.  But if I thought ANY young man was EVER speaking to one of my daughters in this fashion he'd need to have his Big Richard reconfigured in an ER when I was done with him.  The obscenities weren't the real problem:  It was the sense of disrespectful ownership.  And the fact that she felt 'safe' in that environment made me want to weep.