Little and big things

It started with my cold.  I was as sick as I'd been in years (discounting my bout of food poisoning last winter).
Then Pat caught it, and of course, with an ALS patient, nothing is simple.  Yesterday afternoon was probably the scariest time we've had since the trach.   Infection is the bugaboo of our lives, and when something takes hold that quickly and firmly, you just hold on and wait it out.  Dr. Bedlack had told us Superman Christopher Reeves died from an infected bedsore. Germs are our kryptonite.  We walk a thin line in our house. We have to attack infections quickly, but not use antibiotics so much that they are rendered useless.

On Facebook in November, there is a common thread.  Many of my friends write thankfulness posts.

Here's mine.
I"m thankful for big pharma.  People love to hate them because you know, they are big and they make alot of money and don't seem to care. BUT BY GOLLY...without the extremely costly research, testing and marketing, I wouldn't have had the z-pac to give to Pat when he needed it. SO THANK YOU BIG PHARMA...you've made me a happy camper.

Here's another corporate shout out.  Pampers, Huggies, and whoever else makes baby wipes. If you think about it, if we didn't have disposable wipes, we would have to use rags to clean up messes, wipe faces, etc. And that means more laundry, folding and all that other stuff I hate. So thank you Kimberly Clark, Proctor and Gamble and any other corporation that makes home health care easier.

What about cleaning supplies?  Here's a big thank you to Clorox bleach spray.  We can disinfect the bathroom sink in about five seconds...Plastic trash bags? We just tie them up, toss the stuff and don't have to worry about disinfecting the garbage cans.  Plastic cups, plastic straws?  use 'em toss 'em.   Infection control is inversely proportional to landfill control, but in this case I DON'T CARE...

Thank you  Permobile.  When Pat went back to bed, Thor and I kept watch. I was reading THE IMMORTAL LIFE OF HENRIETTA LACKS but that chair is so comfortable, when I sit it in, I'm able to nap as easily as in any leather recliner.  So I did.

Thank you to our girls.  They took me seriously when I told them not to bring the grands around, but they knew enough to visit themselves.   Clare brought me Kung Pao, Anna brought scotch and we watched a really terrible silly movie,  Laina is bringing St. Paul's Barbque tonight.  Emma gets a pass because there is sickness in her own family.

As Laina texted this morning, it was a dangerous Battle of the Boogers, but we are winning...

...so far.

THANKS BE TO GOD.

Missed Opportunities

I've been participating in a study on caregiving.  (I don't even know if that is a word, but it's late at night and really, you know, it works. TWERKING made the OED this year, so I think I'm good.)

The study is conducted by phone because what caregiver has time to drive anywhere to answer questions? I'd  rather spend my free time getting a pedicure.  The person calling asks a series of the same questions, every other week for a couple of months.  I guess it is to gauge how close to pulling our hair out we are.

 One of the regular questions is, 'Do you have any regrets?" And I think I always answered "No."  Not because every decision I made was so wonderful, but with that lovely gift from God called forgetfulness, I don't remember every stupid mistake I've made. So now, according to my brain damaged (I have had about 5 concussions) memory, no, I told them.  No regrets.

I wish they'd called today.  I have a huge regret I could have reported.

The man I married and love is not what I would call vertically challenged, but we did figure out that despite his protestations that he was average height, his suits started fitting better when I bought the 38 short as opposed to regular.  Because I am very similar in height, for our entire married life, I was limited in heel height.  ( Pat didn't like me  towering over him.).

Last night our family book club went to Pregos for our Christmas meeting.  Pregos is a wonderful little Italian restaurant in our town and you can dress up or down as much as you'd like.  Pat stayed at home with our daughter who doesn't attend bookclub and I decided to wear my fabulous RED Liz Claiborne high heels I'd bought about 5 years earlier.  I looked great.  I thought, now that Pat is in the Permobile, I will tower over him anyway, so let's get some great spike heels and strut my stuff.

I was able to walk from the car to the table, but that was about it.  My feet were killing me the whole time.  Thank goodness Vincenzo makes a mean martini to take away the pain.  The dinner helped me forget until it was time to put them on again and even one of the youngest members looked at me with such concern and asked, "are you going to be alright Aiti?" I managed to hobble back to the car and finally into the house.  The shoes are now happily ensconced in the Goodwill bag, waiting to be worn by younger feet.

So I think THAT is the regret I could have reported. I should have worn  sexy shoes while my body could do it.

Here's a link to a cute movie about the power of the heel.  And the lead actor, Chiwetel Ejiofor, is in 12 YEARS A SLAVE as well as that Christmas favorite, LOVE ACTUALLY.

http://www.imdb.com/title/tt0434124/

http://en.wikipedia.org/wiki/Kinky_Boots_(film)

g

Elspeth as a Dire Wolf

Yesterday I felt like a character in the  GAME OF THRONES.  All we've heard for the past three days Is  the cold front was descending from Canada.  We didn't need  Monte Montello from channel 14 to show us his blue screen.  We have the living barometer of Pat, who can be  a Cassandra.

These rapid weather changes are hard on him.  Thank goodness we had an easy hurricane season, we were sort of dreading that.  His joints ache as if he has a sinus infection all over his body and he can't sleep. Lack of sleep means he spends the day just waiting for nap/bedtime and his speech goes all flooey.

  Due to his life long habit of using power tools and no ear protection Pat has chronic tinnitus. If he takes too much ibuprofen, to relieve the pain, then his limited hearing becomes non-existent.  Yesterday was really difficult because we were in the middle of a near 30 degree temperature drop. We watched a couple of good movies but basically just enjoyed visiting with our grandsons who had come to call. We didn't make it outside at all.

At one point Pat even intoned,  "Winter is coming."

 At least his Permobile is more comfortable than the iron throne.

 .

More Life Lessons Learned Late

Just because you or someone you love has Lou Gherig's, doesn't mean life stops.  Things still happen.  Children from the far side of the world decide to move back home.  The family business must be attended to and sometimes truck tires come flying down the super and hit your front fender.

The last thing happened to us on the way home from Durham VA Medical Center.  It was at the cusp of rush hour.  I was on the inner third lane and there was no where to go.  So I remembered our sailing days when something happens that could lose lives.  I grabbed the tiller of the Dodge Caravan and stayed on course.  I had seen the tire pop off the truck, whether it was on the flatbed or on an axle I cannot say, but it disengaged and barreled toward us at a phenomenal speed.  The trajectory was such that I knew it would either have missed us by an inch or nailed the right front quarter of the van. It did the latter, and only later did we both wonder why the airbags didn't deploy and that was one of the many blessings that occurred in those 5 seconds.  No one else was hit, the state trooper surmised it bounced off us and sailed over the other cars and  into the woods of Hillsborough. We were able to hobble off the highway, as the other drivers realized what had happened and slowed down to let us cross three lanes onto the shoulder.

And then of course, the comedy began.  I couldn't find the hazard button.  Pat had no idea where it was either.  While I called 911, we were both frantically searching for it.  As I was describing the incident to the dispatcher, (and why do they always want to know what color the car is?)  Pat found it. Unfortunately, that day his voice didn't work too well and I couldn't understand what he was saying. He was strapped in  the Permobile in the back. He couldn't lean forward and he can't raised his arms to point.  At this point I was laughing at the whole thing while trying to talk to 911. How could we manage to survive the impact, but not be able to find the hazard button?   Finally, after great effort he was able to communicate to me where it was located and we  settled in and waited for Trooper AJ Gurney, a handsome fellow who was quite kind.

Life doesn't stop and neither do blessings.  If the airbags had deployed, I think many people could have been hurt. I couldn't have controlled that tank of a van and I would have slammed into another car. It was a beautiful clear fall day so the other drivers could see what happened. We had a sweet tow fellow and trooper who helped get Pat out of the van safely. We have daughters who live near enough to come rescue us when things like this happen. And they bring grandsons who are always so interested in crashes and crackups, the conversation is never allowed to get maudlin.

When we first got news about Pat's ALS, I thought I heard a burglar one night.  I was lying in bed and I thought, "go ahead kill us and take everything."  That is known as despair and at that lowest point,  I probably felt closer to Judas than Jesus.  The feeling soon passed and every day since, we feel blessed by life and living.  Some days we feel more blessed than others.