Monday, February 8, 2016

Botox......

Babygirl has tried just about everything  out there that there is to try for migraine.  The few things that haven't been tried are the things she can't tolerate, things that don't mix with her transplant meds, and things that are bad for her kidney.


We are left with Botox.


At one point she had nerve blocks in the back of her head to stop the headaches.  They worked (for 24 hours, and then we were admitted to the hospital for a few days).  The memory of the sedative, the injections and the hospital stay are all balled up together for her, and until recently, she's been reluctant to try anything else that involves shooting needles into her head. 


But at the beginning of December, she took a look at how miserable her life had become again (what IS it with late fall anyway?) and I called Neurology to tell them we were finally willing to give the Botox a try.  I called early on a Friday morning.  (My phone has an alarm set that goes off every day at 8:30 AM to remind me that the phones are open at Neurology.  If I call later, they don't get back to me for a couple of extra days because I 'called so late in the day.' It actually went off during a neurology visit once and I explained what it was for to the doctor.  He was surprised, and told me I didn't need to do that.  Um, no. Anyway....) I was told: 1) It takes a couple of weeks to get insurance to authorize Botox, so they may or may not be able to have it available for her upcoming December 17 appointment. 2) The doctor had the day off but would be back Monday and they would address that with him then. 3) She needed to have failed at least three medications and have headaches at least every other day to qualify, so we went over all of that and she certainly qualified, so there should be no problem.


Ordinarily, knowing this department as I do, I would have made a follow up phone call to nag them about it.  But, life....


Mom fell and broke her hip.  Whether she would survive this was uncertain.  Plans had to be made for what to do next, and I had to go on day-to-day mode.  She stabilized enough for me to risk heading for Philly for our appointments.


"What call?"  Says neuro.   W. T. F. 


I recite back what I had been told, and it was agreed that it was a lot of detail for a call that apparently never happened.  But, hey, water under the bridge, right?  They are going to start Right Away and put in an Expedited Request for the Botox.  And hey, it might not have gotten here for this appointment anyway, These Things Take Time.


I'm thinking to myself that these people couldn't find their gonads with both hands on a warm day.


The next two weeks are crazed. Christmas. New Years'. Mom is fading, but slowly, and we need to find a nursing home and get in a application for Medicaid.  I need to take her house apart as if she's dead even though she not. My brothers come in and are blessedly helpful in sorting through family photos and artifacts.  Curlygirl steps up big time to help unload furniture and cart clothing and other small things to the church for the rummage sale.


Early January I call our insurance.  On the  January 4th (three weeks after our visit?) Neurology had reached out to them to see if they needed authorization to physically do the Botox injections: They do not.  But I couldn't see that they had actually asked for the Botox itself.  Our specialty pharmacy hadn't received an order. 


The next day I put a call in to Neurology and asked if there was some way I could help.  Later that day I got a happy call from their coordinator letting me know that they had FINALLY identified our specialty pharmacy and now they could actually get that order placed!


There are times when momentary speechlessness saves us from committing felonies.


"Why didn't you ask ME what the specialty pharmacy was? We get Babygirl's transplant medications from there. Their number is in my phone!"


Would you like a magnifying glass to find those f****** gonads?


Six days later they had the Botox.  Six. Days. Later.  If they had had the right information, paid attention to the phone call.....they would have had the Botox on December 8th, latest. 


The copayment on the Botox is $300.  If they had gotten it LAST year, it would have been FREE because we had already met our deductible. 


Once they got the Botox, they had to look for the 'next available appointment' for the injections.  We leave tonight, for tomorrow.  Two and a half months.  It makes my chest hurt with rage to even think about it.  These folks work at the finest children's hospital in the USA, dedicated to easing the suffering of kids and my kid has had pain nearly every day with an ER visit for headache thrown in for good measure because of this. 


Maybe they need a microscope.


DeeDee











Thursday, February 4, 2016

Four Years.......

Four years ago today they installed someone else's kidney in my Babygirl.  Dialysis is far behind us. 


The day-to-day struggle remains real.  Last week she had three doses of pills left in her pill box, forgotten due to whatever circumstances were going on at the time:  Her dad's surgery, her headaches, my mom's ongoing decline.... It's hard to pin down.  This week was better.


But today is a banner day, a celebration not only of her ongoing survival, but also of the arrival of our newest family member:


Niklaus Castiel Sanchez, JuJuBee's newest arrival.  I'm still at work, and I'm going to have to go home first and see how Hubby is doing, but then I am going to see Boo and Sunshine's brand new baby brother, and I'm gonna love him and hold him and squeeze him and come up with some ridiculous annoying nickname that will stick with him for the rest of his life.


DeeDee

Tuesday, December 1, 2015

General Health Updates.....

Since it's been so long:

Me first:  My blood sugar went nuts earlier in the year with the addition of a newer headache medication.  Getting rid of the medication helped, adding new medication helped more, and adding Maybelle helped most.  I'm doing well on all fronts physically with rare headaches. Emotionally is tougher because:

Hubby:  His back just sucks.  He's in pain all the time, which makes him cranky, which makes me cranky. 

Babygirl:  The kidney is hanging in there.  There was a brief scare with a wildly abnormal level of one of her anti-rejection medications that made us have to run 70 miles one way for a re-draw (and they lost the results so it took a week to get them, so tell me again why we didn't just get it done across the street and wait a week while they sent it out?), but that resolved.  I think I might have had her on the wrong vitamins (seriously, that's all it takes to screw this stuff up).  The headaches were doing pretty well (missing one day of school a week is pretty good) but then she caught a cold and maybe missed a dose of meds and we ran out of some of the right vitamins and then they kicked back in and now she has another cold and now she's had a headache for at least five solid days and I'm waiting to hear from the headache doc.

Mom:  Dementia alternates between 'sucks' and 'entertaining' depending on the topic of conversation, hovering in the 'sucks' direction the majority of the time.  When someone is visiting she 'shows off' by passive-aggressively aggreeing to take her medications and then simply sitting there and not doing it, despite reminders every 5 minutes, for up to over an hour at a stretch until I get ugly and in her face about it, and then she cries.  Same with bathing.  Or she picks things like penises as the topic of dinner conversation.  Or both.  But clearly she is weakening, and she is coughing more, and a couple of times she has said, "I think I am going to die soon."  She's right, but she doesn't remember anything about why. 

Paying off the medical bills every month?  $500. Living in a house where everyone around you is suffering pretty much all of the time and being able to do nothing at all about it?  Priceless. 

DeeDee

Sunday, November 29, 2015

Be Still, My Soul....

Ten weeks is without question the longest time the blog has ever been silent.  It's not because I have had nothing to say, but because everything I've had to say has bottled up in a mass of confusion, internal shouting, and ugliness. 

It's taken a while to get things in my head to quiet down enough to where I don't lose arguments with myself, know what I mean?

It's been a long, tough year, and I've been waiting for any sign, however small, that things could turn for the better.

Three days ago I noticed that Simon, my sweet old dog, was more winded than usual walking.  Then next day he threw up a couple of times.  Then he threw up some more, and by Saturday he was throwing up stuff he hadn't even eaten yet. 

We're not floating in cash right now.  My last annual review resulted in a pay cut (for the fifth consecutive year). I'm sitting on the last $500 of Babygirl's hospital bills from the spring plus a few hundred from my colonoscopy during the summer, and for God alone only knows what reason Hubby's last visit to the endocrinologist appears to not have been covered.  And (in case you hadn't realized it) Christmas IS coming, and I just put on Thanksgiving dinner not once, but twice.  Hiking into a Doggie Walk-In with a desperately ill elderly dog was a recipe for either emotional or financial disaster, if not both.

The vet, thank the Lord, was a practical young woman.  She clearly couldn't say for sure what was wrong with him without testing, but agreed that giving a trial of IV fluids and anti-emetics was a reasonable and cost-effective thing to do, leaving open the option of the million-dollar workup if symptomatic treatment failed.  It cost $134 and two hours of my Saturday.  By this morning Simon was up and running (okay, okay, waddling.  He's never run a day in his life) and is back entirely to normal. 

I paid the vet, Babygirl's docs, my docs, and I'm going to fight the insurance company on Hubby's bill (I always do.  It saves us thousands of dollars every year).  Temporarily, at least, we are at break-even broke, which beats being behind.

And silly as it seems, the goofy snaggle-toothed grin that belongs to Simon is still smiling at me from across the room, and I feel better than I have in months. 

DeeDee

Saturday, September 12, 2015

Memories....

I met Bobbe in an exercise class for pregnant women.  I'd just moved to a new town and didn't know a soul besides my mom, and it seemed like a good way to meet people I'd have something in common with.  Three of us were due about the same time, and exercised together like graceless dancing elephants until we delivered.  We got together afterwards and compared our babies: Mine was smallest, Karen's was the boy, and Bobbe's?  The likeliest to be able to live up to being named after not one, but two English Queens. 

When the babies were less than two months old, Bobbe and I got bored and took a road trip to Philly to visit my brother and sis-in-law for a weekend.  New moms, we loaded the back of her SUV to the gills with full-size strollers, suitcases full of baby clothes, diaper bags, and in Bobbe's case, an entire bassinette.  Two car seats in the back, and two grown women taking turns sitting back there to keep an eye on the babies, taking breaks every five minutes to nurse one or the other of them: We were utterly ridiculous and had no idea that we didn't need any of that stuff really.  We laughed at ourselves over that trip every time we thought of it for years afterwards.

When the girls were 9 months old Bobbe moved to Tampa.  "Come and visit anytime!," she said, and meant it.  So Tampa became Citygirl's and my winter getaway.  We came every year for a week or two.  I have pictures of Victoria in her naked-except-for-fingerpaint stage.  I have pictures of little girls trampolining.  I have pictures of Citygirl pinwheeling into a pristine backyard pool in the January sun.  I have memories of Bobbe talking her pediatrician into seeing Citygirl for one of her many ear infections.  Of meeting her church friends. Of sitting and talking and talking and talking about nothing and anything and everything on the lanai. Of shopping for real bras together once we were done nursing (I had never had a professional 'fitting' before. Bobbe insisted. She was right - who knew?  Take her advice, ladies - go and let some total stranger measure your boobs.  Your boobs will thank you). 

They would come north in the summer.  We went camping together, drinking Bailey's Irish Cream beside the campfire next to giggling girls cooking marshmallows over the coals (I insisted. To Bobbe's chagrin, Victoria loved it.  I think it cost her a fortune in camping equipment over the years).  We lay on our backs on a thyme-covered hill watching the stars, and stayed there long enough to know it was the earth moving under us and not the stars moving over us. 

One memorable week we traveled to visit, bringing all of Citygirl's siblings, my brother, sis-in-law and their two kids.  I overheard Bobbe say casually to someone on the phone, "Oh, no, not this week.  I have nine houseguest so I don't have any extra room." Whoohoo! I was the one who finally filled her house to CAPACITY!  That was the same week that we went for desert at a local restaurant, only to discover that the President was eating dinner there! The memory of Bobbe's excited thumbs-up dance in the middle of the street when she learned this news still makes me laugh out loud.  Victoria and Citygirl spent an evening stalking former President Bush.  Ask them about how successful two fifteen-year-olds can be at outwitting the Secret Service. 

When the kids got older the visits got less frequent, but it didn't change the fact that Bobbe was one of the best friends I ever had.  Her willingness to go the extra mile, driving me and my Babygirl to a doctor's appointment that was literally a 384 mile round-trip while I did dialysis on Babygirl in the back seat of her car was just one more example.  And we used the time to talk, and talk, and talk about everything and nothing and all the things that cement a friendship between women. 

My brother once said, "I don't 'get' you and Bobbe.  You don't seem to have anything in common."  On the surface of it, I suppose we were very different people.  But our friendship began at a time when our lives had everything in common:  A focus on the love of a tiny little girl.  We had no nearby family, and no friends who wanted to hear us brag about every blink and bowel movement.  And once you bond like a sister, you stay sisters forever.

I miss you to the moon and back, Bobbe.

DeeDee

Tuesday, September 8, 2015

Arriving Late......

It grieves me terribly to admit that I was late to the wedding.  Not late-late - I was in time for the ceremony.  But I was a full hour later than the time Citygirl told me to be there.  And I'll never be able to make that right, really.

But here is how it went:

I had asked a friend of my Mom's to come to the house to help get her ready, and I was to pick her up at 8:30 AM.  The house was packed, or I would have had her spend the night, which she typically does on Fridays anyway.  She doesn't drive and there are no early buses on Saturday, but since I only had that task and getting myself ready it shouldn't really be a problem, right? 

I called her at 8:20 to let her know I was running a little late.  She was running even later. "Could you get me about 10?"  Criminey, TEN?  Well, it is what it is, right?  And it isn't like I'm some kind of makeup freak - I can shower now and then all I'll need to do is slip my dress on. 

Mom had been showered by an aide the day before, and I got her up and tried to get her moving:  Meds, breakfast, coherency.....not going with any speed. 

People came and went needing help with one thing or another.  At some point I sent someone out to the truck with my keys to get something for somebody...it's all a blank. 

Near 10 o'clock, I went to grab my keys and leave, and.... no keys.  No problem, Hubby has keys.  But....No Hubby!  He's gone someplace for God alone only knows what reason, so I backtrack on the keys.... and call my nephew.  "J, what did you do with the keys after you got the stuff from the truck?"  "Ummm....I might have left them IN the truck."

Oh. My. God.  And Hubby has the truck.  And he is not answering his phone.  And it is now AFTER 10 and I am supposed to be home already and dressed and CRAP.   Just as I am about to have a major private meltdown my sister-in-law pulls up to the curb.  My brother had forgotten his computer and he needed it to run the sound for the wedding.  Excellent!  Please please give me a ride to pick up Mom's friend?

No problem.  Except that no one ever warned me that my sis-in-law drives like a Chihuahua on speed.  "The speed limit here is 30.  We don't have time for a ticket, you can't go 50 on a city street and OMG THAT LIGHT WAS RED AND I AM GOING TO DIE BEFORE MY DAUGHTER GETS MARRIED!"

By the time we got back home it was 10:30, the time I was supposed to be at the wedding venue.  Mom still wasn't dressed and her ride was arriving in half an hour, and I wasn't dressed and I still didn't have a ride either. 

At some point you just give up, you know?  I could either rant and rave or I could make my Mom's day pleasant, so I took my time, did her hair, got her dressed and helped her get into the van at 11.  By that time Hubby was back, and I helped him fasten his cummerbund and got into my dress. 

And then there was that one really, really bad moment, when all the stress of the morning hit:  I'd lost a little weight since I bought the dress, and I needed to pin the dress to my bra to cover a small gap.  I looked in the mirror and I just couldn't do it myself, and I started to cry, "I need Bobbe.  I just need Bobbe!"  But she's gone and she won't see my daughter or worse yet HER daughter get married and OhMYGOD Bobbe....

Thank God I'm not a makeup person.

I arrived at the museum at 11:30.  I missed the family portrait time with the photographer, so there will be very few pictures of me in that fabulous dress.  But I arrived in time to help my precious baby with a last-minute wedding-dress wardrobe malfunction that I hope helped her forgive me for adding to her stress on her special day. 

DeeDee

Monday, September 7, 2015

Rehearsing.....

I've been in weddings, as bridesmaid, but the last time was probably close to thirty years ago.  If there was a rehearsal dinner I don't recall, honestly.  What I DO recall about that wedding was rear-ending another car on the way home because I was so sleep-deprived during my pediatrics rotation (but I digress.  No injuries, no car damage, no delay, it was all good, right? Right).

Citygirl's rehearsal dinner was held at the museum where the wedding and reception were held, using the same room Make A Wish used to reveal Babygirls's Paris trip.  Citygirl's minions had made it lovely - flowers, table runners, atmosphere - lovely. There were seats for exactly all those expected.  The museum's courtyard was all set up for the big event, and could be seen from the windows. 

They had a caterer, a local Pakistani restaurant to honor Citygirl's heritage on her dad's side.  Her Auntie in Pakistan had gotten Citygirl's and her Beloved's measurements and had lovely traditional Pakistani clothing made for the event.  The rehearsal went was looking to go well, and then....

People just started to show up.  Those who did had reasons to be there, some of which even had something to do with rehearsing for the wedding, but....suddenly seating was, well, off.  And the caterer somehow forgot he was in America and started running on Pakistani time (I know. I lived there for a while. If an invite said "7 PM" for the love of ALL that is holy do NOT come before 8:30 or your hosts will still be showering and the servants will not know what to do with you!).  The resultant chaos went unnoticed by the majority of the guests.  And who knew my Ex could be so gracious a host?  Kudos to him, and a Boo/Hiss to what was our favorite restaurant!

After the rehearsal dinner there was a cocktail 'hour' (or three) at the hotel where most of the guests were staying.  It was very lively, but I have to say that all I consumed was about 10 glasses of ice water.  It was fun watching the crowd of Citygirl's high school friends act like they've always acted together:  High spirited, happy, and loving.  It was wonderful seeing them blend in with new family and old, welcoming all.  Citygirl and her Beloved have between them a solid base to build on.

DeeDee