Tuesday, February 24, 2015

The Other End of the Journey.....

I met a woman today who is 16 years post-transplant.  She says no one knows why her kidneys failed - she's not a diabetic, she never had high blood pressure.  It was just one of life's mysteries.  She did hemodialysis via a catheter in the veins under her collarbone for a while and switched to peritoneal dialysis at home for a few years until she moved up the list and got her transplant.  No one knows why her donor kidney is failing, it's just par for the course with transplants.  She came to the office to do paperwork so a local agency would set her up for assistance at home.  Between the anemia, the dramatic leg swelling, the lack of appetite and the nausea that come with the final stages of kidney failure she simply doesn't have it in her to keep up with her housework or go out and get her groceries. 

She's my age.

They are delaying hemodialysis as long as possible, giving time for her new arteriovenous fistula to mature so they won't have to insert another catheter, decreasing her risk of infection. She can't do peritoneal dialysis again: The weight she's gained from the anti-rejection medications and the amount of scar tissue from the transplant make that impossible.  And dialysis itself is risky.  People don't think of it that way, but it is true.  It is very unlikely that she will get another kidney.  She has a rare blood type and has a number of tissue antibodies which will make her difficult to match.

She's Babygirl's future. 

Except she was in her forties when she got her kidney.  Babygirl was 12. 

We need a cure.


Wednesday, February 18, 2015

Giving It Up.....

Lent is here.  Again. Already.  Seriously, where does the time go?  Like every year, I've given some thought to the discipline that Lent is supposed to represent, with an eye toward improving my relationship with God.

When a pastor friend of mine shared this link: Forty Things to Give Up for Lent I almost didn't check it out.  I mean, I don't need MORE things to add to the list, right? 

But it's a great list of things to consider giving up, not for Lent, but forever.  Blame, guilt, fear of failure, apathy - we all carry so many of these things around with us unnecessarily.  They make our burdens heavier and our days darker to no purpose.

Sorrow, ungratefulness, envy and worry - those all spoke to me.  Yes, much of Babygirl's life is sad, and that make me sad, which leads rapidly down a road to all three of those other things:  I'm NOT thankful for this life sometimes, I envy the health of other kids, I worry about her future...and then it cycles back to sorrow.  Just putting it on paper makes me weep, and how do I not?

It's easier to give up chocolate and cussing.  But those are not the things that separate me from the love of God, are they?

Working on these issues may be one of the hardest disciplines I've ever chosen. And in fact, I have not chosen it, it 'chose' me.  The lessons learned by parents who walk this road cannot be learned in 40 days, and in many ways our 'fast' never ends. 

Nonetheless.  Spending 40 days improving my awareness that I do not carry these burdens alone is a good discipline.


Tuesday, February 17, 2015

Fifty-four Lengths.....

Being unable to breathe equals being unable to exercise, so for the last four weeks I haven't been to the gym, which means Babygirl hasn't been to the gym either.  We went together Saturday and clambered onto a pair of elliptical machines. 

One of the side effects of prednisone is weight gain.  It's not a problem for me, but it's a struggle for Babygirl.  The double whammy of this drug is that it also causes muscle loss, which is more of a problem for me than for her.  But take me out for a month, and her for more like a year, and you get some pretty sad results.  We were both gasping and sweating after twenty minutes.  She did a mile and a half.  I did two miles.  A month ago I was doing four miles in thirty minutes.

Sunday she wasn't up for going, but I went to the pool.  I managed thirty lengths in about as many minutes.  A month ago I was doing more than twice that.  A mile is seventy-six lengths, an I could do it in about forty minutes.  Damn.  And the removal of that beta blocker migraine-preventer medication?  One of the OTHER things that does is keeps your heart rate down.  So my heart was racing like I was being chased by a mugger with a knife. 

Well.....I'm stubborn.  I know I'm not going to die unless I STOP doing this, so I went back yesterday (elliptical, thirty minutes, three miles) and today (pool, fifty-four lengths, thirty minutes) and, wait...what? 

Seriously, it took four days to get my heart to stop pounding and let me do a reasonable pace at swimming.  If it weren't for the general 'out-of-shape-ness' of my arms I could have finished the extra twenty lengths for the mile in another fifteen minutes.  And four days of serious exercise did more to finish off my asthma attack than my inhalers have done. 

I should have gone back a week sooner. 


Saturday, February 14, 2015

Wasting January.....

January has been a total bust, and February is half gone.  Babygirl's headaches march on, improved only in the sense that she has some daily breaks from the pain unlike October and November's relentless around-the-clock agony.  It's too soon to see if the Cefaly is helping either of us.  (Hubby came in while I was using it last night an observed that it caused 'double creases' in my eyelids and made me look Chinese.  I've no doubt.  It feels like it is trying to make the front of my face slowly spin like combination lock, first clockwise, then counterclockwise, then back, while my eyelashes continue practicing their Rockettes tryout routine.)  It's a good thing I don't do New Year's resolutions.

That being said, I did have things I wanted to do: Some fix-it-up projects that I've been ignoring for a couple of years like minor plaster touch-ups and some painting.  I'm still waiting for my lungs to stop twitching before I tackle those, so February isn't going to see much accomplished there either.

I guess at this point the best I can hope for for either of us is that we hold our ground.  I've gotten rid of one migraine prevention medication and am at the end of my steroid taper (finally!) and haven't seen a migraine yet, so that's a good thing.  Babygirl's medication change hasn't really produced results but her upward taper is so agonizingly slow (we just increased the dose of the medication for the third time:  She's been on it a month and she's on 75 mg/d of a medication whose maximum dose is 400 mg/d).  The good news is that she appears to have broken out of a spectacularly evil mood that she was in for about a week, enough so that she noticed it herself. 

It's sad to me that at this point I consider it progress if we don't regress.


Thursday, February 12, 2015

Behind on Laundry...

Laundry is one of my Zen activities.  Sort. Load. Fold.  Keeping up is one area I almost always have under total control, even in the days when there were 10 people in the house.  Because Curlygirl and JuJuBee use us as a Laundromat I've had to adjust my timing a little over the past couple of years, but I've never fallen behind.

Two Sundays ago I put away the last of the laundry and then changed the sheets on my bed.  I dropped them down the laundry chute, waiting for the 'swish-thud' that follows as they travel down and hit the bin in the basement. 


Not a good sign.  The chute is two stories high, and a fairly big triangular structure.  I got a flashlight out and looked.  The sheets were about four feet down. 

That's a big laundryjam.

I went to the basement and looked up, and, sure enough, there were clothes resting in plain sight.  I grabbed a stool, and started pulling.  The bottom four feet or so of the jam fell right out.  I went back up (two flights, asthma in full spate if you recall).  The top of the jam hadn't moved.  I pulled out a mop, laid myself on the floor with the flashlight dangling from my teeth and started pushing.  Then I got the broom, inverted it so I could place the top of THAT handle on top of the mop handle and pushed some more. 

Back downstairs.  The now-compacted wad of clothes are still not within arms' reach, so the basement broom gets into play, sliding up one corner of the triangle to try and pry something, ANYthing, downward. 

After half-a-dozen back and forth trips, I finally succeeded in dropping about 8 loads of clothes on my head.  This explained why I felt I was missing some socks. 

Add a weekend away from home to the mix, and an extra load of wash whenever I could remember to fit it in between sessions of electroshock therapy?  Well, I'm finally almost caught back up, but there've been a few times this week when I've waited for the dryer to stop so I could pull out something I needed to wear to work.  I haven't done that since my twenties.


Tuesday, February 10, 2015

Retreating With the Team.....

Our Mission Team retreat was this past weekend, squeezed in between car crashes and electroshock therapy.  We shared dinner Friday evening with the church's College Dinner, a free meal offered to any student who cares to show up on the first Friday of the month.  It was fun to chat with people who are studying things I'll never understand, and to listen to a young man passionately recite Pi to the 50th digit, in honor of the extremely exciting upcoming Pi day (3/14/15 9:26:53).  Rock on, geeks everywhere!

As always, the retreat is multipurpose:  Get the new people to know the established people.  Get some cultural training and learn the general rules of the organization.  Do something of service for the church.  Eat a lot.  Stay up really late playing games.  Catch a bat or two (optional). Do some fundraising.

This year we asked our churches to donate any leftover fabric they might have lying around, and brought sewing machines along. During the course of the day on Saturday those machines were in steady use for nearly 10 hours.  We made infinity scarves and rice bags.  And by 'we' I mean the entire team, men, women, boys, girls.  Cutting, pinning, ironing, hand stitching, machine stitching, stuffing bags - we filled two bins with things to sell at an upcoming craft fair, and it was done with laughter and teasing and considerable skill.

Our workshops included one session on living roll playing through a poverty budget for a month, and another where teams had to select (from real applications) which one of five homes that they would work on.  And on Sunday I twisted some arms and got some of the team to sing in the choir before we were all commissioned. 

People ask why we do it.  Why go off someplace and crawl underneath a house with the bugs and put up insulation?  Or risk life and limb climbing on a roof in the summer heat?  To help others, certainly.  To see the youth become part of something larger than themselves, absolutely. To spend time with some of the best people have ever known in the name of becoming a better person myself.  Yes, amen.


....and Chef Michael's baked ziti.  Amen and amen.

Monday, February 9, 2015


The list of things we have tried for migraines is impressive.  Babygirl and I have tried standard therapies, natural remedies, dietary manipulations.  I've tried massage (Babygirl can't tolerate it), manipulation (including cranioscacral) and acupuncture.  We've done off-label uses of medications.  We've done oils and aromas and....well, you get the idea.

Last fall I read about a medical device called Cefaly, a device approved by the FDA to reduce the frequency of migraines.  Babygirl's doc ordered it for her last November, but we hit a couple of little snags obtaining it.

In order to get this thing, you go to the website and place an order, and then fax a copy of a valid doctor's prescription for the device to the website once they've processed your payment (insurance doesn't cover it.  They aren't going to mess with you if you can't pay).  One of their requirements is that the name on the prescription must match the name on the credit card used for payment.  Babygirl, of course, does not have a credit card in her 15-year-old name.

I sent an email asking the company what one does under the circumstances?  Well, since the FDA has not approved Cefaly for use in anyone under 18, one does without the device, was their response. 

That's awkward.  (You'd think the pediatric neurologist might have been aware of this roadblock.)

When I got sick last month, I had to see my doc, so I mentioned the device to him and explained the problem with getting it for Babygirl.  He had recently read about the Cefaly and immediately pointed out that the device would be excellent for MY migraines (I love that guy.  He didn't even need prompting) and immediately wrote me a prescription.  What with one thing and another (paycheck availability of a spare $400 not the least of them) we finally got the device last Thursday.

It's cute.  The box shows a picture of a blissful Scandinavian woman wearing her tiara-like Cefaly, looking as if a migraine could never, ever touch her again.  The reality is.....less blissful.

You attach a butterfly-shaped electrode pad to your forehead directly above the bridge of your nose, winging out over your eyebrows.  In the center of this there is a small button upon which the little tiara rests.  To start the treatment you push a button in the center of your pretty little crown and wait for the 'sensation' to start.

Aside note:  Remember in Lamaze class when they talked about 'pressure' and 'contractions' and never once used the more accurate "you-are-being-eviscerated-from-the-inside-by-aliens-PAIN!" because they thought maybe calling it 'pressure' would somehow make it magically hurt less?? Yeah, the Cefaly people think like that too.

The instructions say that the 'sensation' will increase in intensity over the first five minutes of the twenty minute treatment session and then remain at that level.  If the 'sensation' becomes too intense, you can press the button and the sensation will remain at its current (too intense!) level for the rest of the treatment without increasing.  The book recommends that you get over yourself as quickly as possible and move up to the full strength treatment for the full benefit.

Let me admit up front that I am a wuss. I'm not that jerk that tells the nurse the pain is 10/10 while joking with a friend on the phone, but I am not one to tolerate a lot of pain without looking for an out.  So the first time I tried the device I hit the button at about three minutes because I swear to you there were bees under that electrode stinging my forehead and I could feel it to the roof of my mouth.  And those bastards kept it up for the next 17 minutes.  How a device powered by two tiny AAA batteries can pack such a punch is a mystery to me.

It was hard to put a positive spin on this for Babygirl. 

But she is NOT a wuss.  Not to say that the first try didn't result in a sudden jerk of her head that knocked the device clean off the electrode.  But she made it 4 minutes in before hitting the this-is-enough button and sat through the next 16 without a peep. 

I did my second treatment after her (I really didn't want her to see my face).  I let it go to full.  Dude.  My eyebrows and eyelashes were standing on end, and my hair from the forehead to the crown of  my head was too. Toward the end the hair on the back of my head lifted as well.  My eyelids were vibrating and my skin from my eyelids to my scalp felt as if someone were peeling a facial off - the old plastic-feeling kind - over and over and over.  I kept touching my skin but nothing was actually peeling off but I could feel the muscle twitches.   And Holy Lord my eyeballs.....

I finished this an hour ago and my top teeth still ache.  Babygirl feels fine.

The instructions say we need to do this once a day for at least a month to see if it works.  Yippee skippy.