Vicks VapoRub and Dark Chocolate

I smeared Vick’s VapoRub on my chest and the bottoms of my feet, put on a pair of heavy socks, laid my head down on 2 pillows and tried to go to sleep.  Before bedtime I tried lemon/ginger tea with honey, straight teaspoons of honey, enough mentholyptus cough drops to make me anxious about my next dentist appointment, and several squares of dark chocolate.

Why not?

I had a bad cough from pneumonia, even after the antibiotic kicked in and I felt some better.  No cough medicine helped.

I googled People’s Pharmacy, a public radio show that originates down the road in Chapel Hill.  It’s a safe site for natural, old-wives-tale-type remedies.  I like to just wander through their website. Here is the link I found: People’s Pharmacy Cough Remedies.

That 1st night of Vick’s and ginger and chocolate I took no cough medicine.  I slept for 10 hours without much coughing.  My daughters with babies were jealous.  I tried all the remedies the next evening, too.  I coughed some.  Third night, I was no better than before the home remedies.  Did it work at all?  I’m really grateful for that one good night.

People cough everywhere I go.  We should all agree not to leave our houses for 2 weeks.  Buy groceries like it’s going to snow a foot or more. (That’s a BIG deal in NC.) Have on hand whatever you’re addicted to.  I think snow calls for Doritos and ice cream, myself.  Stock up on books and movies.  Then at a specific time on a specific day, the whole country shuts down.  We could all rest and get well and stop trading germs around.

Obviously I write as a 60-year old woman who lives in a big house with a retired man who takes naps and can cook.  I would never have suggested this when we had 2 little kids.  I don’t know what we’d do about the potential for child and spousal abuse.

Ok, I need to rethink this.  Maybe I’ll just quarantine myself.  You all do what you want, but don’t come to my house.

PS:  Vicks VapoRub was invented right here in Greensboro, NC, where I live.  Cool, huh?  Click here for more odd uses.

Disabled

I asked the Social Security Administration of the US government to label me “disabled.”  The application process left me drained and depressed.

I listed my “Physical and Mental Conditions,” 6 of them.  I listed my “Doctors and Other Healthcare Professionals,” 5 of them.  I listed my “Medicines’”, 7 prescriptions.

The paralegal at the attorney’s office helped me with the last section, “Remarks.”  She asked questions, I talked about what all I can’t do, she suggested more specific words and she typed it into the application.  Here is what she wrote:

I can only walk 5-10 minutes due to joint deformities due to my Rheumatoid Arthritis.  I do not have an even, steady gait and use a cane at times as my doctor recommended.  This has caused me to have intermittent back aches.  I cannot stand long for the same reason.  I drop things a lot due to the weakness and deformities in my hands and fingers and cannot lift more than 10 pounds and even then I have to use both hands.  I have loss of dexterity and some of the joints are frozen in my hands.  I can’t do cross stitch anymore, either.  I cook much less now as I can’t safely lift heavy pots and pans nor stand very long.  I have trouble changing the sheets on the bed and I can’t clean my bathroom.  Even though I had non-Hodgkins lymphoma in the past, I no longer have any limitations or symptoms for that.  I started having Vertigo a few weeks ago and my heads spins when it hits.  In my latest blood work I was anemic.  I am fatigued easily now.

Wouldn’t you be depressed?  I was upset for a couple of days.  Then I listed things I CAN do.

I am resilient and strong and creatively adaptable.

I thank my husband for helping me when I ask and never complaining.  (Although he said one time if I have another knee replacement he might not be my primary caregiver.  The first one was rough.)  I thank him for not offering to help all the time.  He sits back and watches me struggle with tasks of daily living.  He says okay when I want to travel by myself (even the time after the cancer diagnosis when I told him I wanted to go to Paris by myself, which I did in 2006.)  I know he worries, but he doesn’t burden me with those thoughts.

I am grateful for my daughters who cheer me on, give me shit when that’s appropriate and worry together behind my back. I hope I model fierce, not stupid, independence.

I am grateful for my grandchildren,  my joy and reasons to take care of myself.  They know me only as I am today. I can’t lift them up by myself, though I can hold a sleeping baby for hours and cuddle on the couch really well.  I can’t change diapers anymore (hee hee) and everyone is okay with that.

I thank God for my family, friends and therapist who keep me functional and medical science for the medications and doctors and nurses who ease my discomfort.

I recognize that the people I know who are HIV positive teach me about acceptance, letting go, the power of faith, and living with pain in all its forms.

I am who I am because of my challenges, my limitations, and the lessons to be learned from them.

The letter from the Social Security Administration came last week.  “You are entitled to monthly disability benefits.  We found that you became disabled under our rules on March 31, 2009.”  (I wasn’t disabled on March 29?)

I shouted to my husband, “I qualified for disability!”  “Congratulations,” he said and we high-fived.

Is that something to celebrate?

I choose, most of the time, to celebrate and be proud of what I can do today.  I certainly get frustrated and upset at times.  I say bad words and even let myself cry a bit.  That’s just okay, as my friend Jan says.

We all have choices.  I choose to keep going, laugh as much as possible, and try to ask for help when it’s wise to do so.

The US Government says I am disabled.  I say, not really.  Who ya gonna believe?

In and Out of the Car Was the Hard Part!

The retired man I live with suggested with great enthusiasm, “Let’s go to the Zoo!” to our daughter, her kids and me.

The NC Zoo, 30 minutes down the highway from us, houses animals from Africa and North America on over 600 acres of “natural habitat.”

I was the only one who hesitated.  The website  says to plan on 2-3 hours to see the Africa section.  That’s a whole lot of walking for me.  There’s a tram, but you can’t see the animals while riding it.

“What the hell,” I thought.  ”I am not missing Adaline’s first visit to the big zoo.”   If I couldn’t walk the whole way, I’d figure out what to do next, even if I had to say “I can’t” and ask for help.

The retired man I live with drove the Camry.  I rode shotgun.  The other three got in the back–on one side the forward-facing car seat for the 2-3/4-year-old granddaughter, on the other side the backward-facing car seat and its base for the 6-month-old grandson.  Their mom, who was a zookeeper before children and very excited, perched in the middle after she climbed over the baby car seat base.

We had snacks for Adaline and water for all of us.  The high-end double stroller I found in a consignment store (best deal ever!) fit in the trunk, barely.  And we were off.

We parked far away from other cars.  We needed a lot of space to unload.  First out of the back was the baby, in his car seat, then his mom had to climb past the car seat base and almost planted her face in the asphalt beside the car.  Grandpa got Adaline out of her car-seat and her mother grabbed her hand before she could dart away.  My hands don’t work well enough to help so I stood guard by the baby car seat in an empty parking space.  A bee got caught between two of my finger and stung me while Grandpa wrestled the double stroller out of the trunk.  (Nothing was stopping us by then.)

Her mother put Adaline in the front seat of the stroller and lifted Atticus from his car seat to the back seat of the stroller.  Grandpa put Atticus’s empty car seat in the car.  We gathered purses, diaper bag, and camera bag, stuffed the diaper bag and a purse in the pullout basket under the stroller seats and hung the camera case and another purse over the stroller handle.  We headed to the entrance.

We saw giraffes with a baby, lions, chimpanzees, 2 mama gorillas with babies (!!) and ate pizza for lunch.  Adaline and her mom rode a carousel, we saw rhinos and ended at the elephant habitat where a big, dusty elephant with saggy wrinkled skin slowly strolled past the spectators as if on a red carpet in front of paparazzi.

I walked the whole way, with stops on benches by the animals.  I think maybe it took us more than 3 hours.  Then it was time to reload.

The retired man I live with got the car while the rest of us waited by the entrance.  Reloading began.  At one point, Adaline and her mom were in the car, Atticus was in his car seat on the ground beside the car and I was helping Grandpa remember how to collapse the stroller and wedge it into the trunk.  He headed for the driver’s seat and our daughter and I yelled “Get Atticus in!”  He did.

It was a beautiful day in every possible way.  Except for leaving the camera behind.  We might need more practice.

Oh Say Can You See–From Below?

Crowds are hard for me.  I have a mild claustrophobia–I need to know I can get out, get to an exit.  I’m short and can’t stand on my tiptoes anymore, so I can’t ever see much beyond my body space.

When we went to Washington, DC, in January, 1993, for Bill Clinton’s Pre-Inauguration, I upset my family when I refused to push up into the crowd to get closer to the concert and speeches.  I told them to go ahead and I would wait by the big tree and they could find me afterward.  My daughters, 12 and 14, started walking off.  (Surprise.) My husband called them back, asking me if I was sure I couldn’t go closer.  He told them we all needed to stay together.  The girls glared at me.  We could kind of see everything on one of the big screens.

My friend Sarah asked me to go see Michelle Obama at UNC-Greensboro.  She lives within walking distance (for her not me) of Fleming Gym.  After some discussion of my limitations, (we needed to walk about 5 blocks and then stand for several hours) she offered to push me in a wheelchair.  She offered because she wanted me to go.  I was humbled by her generosity.  I really wanted to go so I swallowed my pride and said yes.

Sarah and I started on our Michelle Obama adventure.  The doors opened at 11:00, we got there at 11:10 (she was to speak at 1:15) and got into the line for disabled people.  They let all of us in first and guided us to a section to the right of the stage.  The other line stretched for blocks in the hot sun. Sarah and I ended up in the front row. She sat in a chair beside my wheelchair.  A railing, 10 feet of floor and a (female!) Secret Service agent separated us from the stage.  All the people outside our “fence” had to stand crowded together and many couldn’t see well.

I felt guilty.  I knew I couldn’t walk 5 blocks and then stand on my own for several hours. But I don’t usually think of myself as disabled so I felt like a cheater.  Until the end.

After her speech, Michelle Obama came down from the stage and started working her way around, shaking hands with the volunteers who had special tickets to be up close.  When people figured out she was headed for our section, they slipped under the little barrier and filled in the small open space in front of the wheelchairs.  Four rows of people slid in front of me.

I felt my mild claustrophobia stirring– I sat in my wheelchair, completely surrounded by standing people.  They stepped over my foot rests (almost falling on me) and rarely even looked down at me or spoke.  A few said “I’m sorry” but they still stood in front of me.  Rude.  I saw the top of Michelle Obama’s hair and her bald Secret Service agent’s head.

Ride in a wheelchair sometime in a public place.  You’ll see our world in a very different way–from below.  You will be invisible to many other people.

I learned curb cuts and level sidewalks and automatic door openers matter.  A lot.

So do compassion and courtesy and genuine concern for others.

Living Beyond the Warranty

Last week I wrote about my ailing computer.  It ran really slow and I was afraid it had early-onset dementia and would lose its memory.  Which contains a lot of my memory.

My computer and I are reunited.  It has a new hard drive.  Its memory is intact.  Now I can’t connect to iTunes. I need to connect to sync my iPhone calendar to my iCal (calendar) on my computer.  (That sounds ridiculous, doesn’t it?)

I see a pattern.  I increasingly rely on my tech-toys to back up my memory.  I’m okay with that. Really, it’s kind of cool.

Now I need a new hard drive for my body.  I celebrated my 60th birthday in March.  And, as a cancer survivor, I am grateful for every day.  However.  My parts are wearing out and beyond the warranty.  I don’t think I have enough time left to replace them one by one.

After 25 years of rheumatoid arthritis, I have artificial joints in my knuckles on one hand and a left knee replacement.  I set off the metal detector the last time I flew.  No one cared about my official card from DePuy describing my titanium knee.  I had to go into the total-body scanner.  On the inside I giggled about the poor guy in some little room who had to look at my body unfiltered by clothes.

I miss being independent.  My damaged hands frustrate me daily.  Now I’m anemic and so I have limited energy each day.  I choose my activities carefully.  I drive myself around town and go most anyplace I want, but I get tired and I feel very vulnerable in parking lots.

I want to replace everything at once.  A new hard drive rejuvenated my computer without losing any memory.  A rejuvenated Robin with intact memories and no loss of hard-won wisdom?  Perfect.

What would I do?

I’d pick up each grandchild with no fear of dropping or hurting them.

I’d swim laps without hanging on the wall to catch my breath.

I’d get on an airplane and fly to NYC or Paris.  Alone.

I’d clean my house all by myself.  (maybe!)

Or I could just accept the body I have and be grateful for medical science and my own determination and resilience.

I could find joy in each day and learn to ask for the help I need when I need it.

And pray.

Computer Down!

My laptop got sick.  I took it to the computer-fixers.  It lived with them for almost a week.  I missed my friend, my buddy.

I know now how much I look at Facebook (embarrassing) and how often I go to Google to look something up.  It’s kind of like forgetting your watch if you always wear a watch–you learn how many times you look at your wrist.

What a marvelous excuse for not writing anything for my blog or my writing group.  I couldn’t write on Mike’s laptop or iPad.  It felt wrong to my hands.  I needed my own computer.

I did read a lot.  The Greensboro News and Record, O Magazine, Time magazine, and a parenting book called Love and Logic.

I always read at least part of any childcare book I might give my daughters.  If I don’t like what it has to say why would I give it to them?

A young friend recommended Love and Logic along with The Happiest Toddler on the Block.  Love and Logic passed my tests.  I’ll let you know about the one with the dopey title.

The retired man I live with bought this laptop for me a few years ago.  Rheumatoid arthritis chewed up the joints in my hands and wrists enough that I can’t lift or hold much weight at all.  I love it.  It’s very thin and light, I can carry it around and it fits in the Vera Bradley backpack purse.  My hands and it know how to work together.

When it started to run slooowly, I took it to IT Worx. On Friday the 13th.

It needed a new hard drive.  We had an Apple Care warranty good until July 17.  The little dent on the side negated the warranty.  No kidding.  (I dropped it.  More than once.)

Now you know why I don’t pick up babies after about 10 pounds.  They dent. They have no warranty.

I’m sure I’d lose my Amma privileges if I dropped one of them.

The Retired Man I Live With

He retired 3 years ago.  I knew it would be an adjustment for both of us.

We worked together for the first year or so of his business.  I learned he has ADD.  He learned I don’t like to be ordered around.  We are both oldest children and both like to be in charge.  It did not go well.

The retired man I live with is always “doing.” His retirement hobby is puttering.  He loads and unloads the dishwasher, vacuums up the clumps of dog hair Sydney drops this time of year, and often fixes dinner.  Our yard is beautiful.  He painted the upstairs bathroom and put in new stick-on tile flooring.  He does his own laundry.

He takes care of me on days when my rheumatoid arthritis acts up or zaps my energy.  He has patience I never expected.  I feel loved.

His busy energy permeates my house and makes me crazy.

I am an introvert who requires solitude and quiet.  I never had long-term sadness about the “empty nest.”  They didn’t go far and I enjoyed the empty house while Mike worked.

I miss my empty house.  I miss my solitude and quiet.

I am spoiled rotten by the retired man I live with and I complain that he is always around.

Okay.  I know.  The only thing I have control over is myself.  And I’m better than I used to be at having the wisdom to know what I can change and what I cannot.

I’ve known the retired man I live with for 40 (!!) years.  He is not going to change.

I’ve never liked those little iPod ear-bud things.  But I think I’ll try being like a teenager and play some mellow music I like and tune out the active energy seeping up the stairs to my office.  I might even stuff a towel in the space between the door bottom and the floor, like you’re supposed to do if there’s a fire.

Got any other suggestions?

Not my mother, not my father, but it’s me O Lord, standin’ in the need of prayer. *

I’ve always had my mother’s hair–wavy or curly, depending on the humidity, and lots of it. Mom greyed early and never colored her grey.  In the 1960′s people asked who “frosted” her hair; women actually paid money for the grey highlights that Mom grew naturally.

I was afraid to iron my hair so I tried Curl Free for my high school graduation.    It was June, 1970, in Raleigh, NC, and Dorton Arena at the NC State Fairgrounds was not air-conditioned.  I just wanted long, straight hair down the back of my blue graduation gown.   The pictures from that night show beautiful waves that got bigger and bigger in the humidity.  I hated it.

For a lot of years I judged my mother harshly.  I didn’t like the way my dad treated her and I couldn’t understand why she didn’t resist.  When my dad retired early and then went into a nursing home at 63 (the result of drinking, diabetes, and a stroke), she lived alone for the first time.  We moved them from Ohio to Greensboro and helped her buy a one-level 2-bedroom town house close to our neighborhood.  She spent her time reading and watching CNN.  I felt sorry for her.  Her life was disappearing and she hadn’t accomplished anything.

“I think I’m turning into my mother!’”

The same wavy grey hair circles my head.  My chair sits beside the aquarium with the huge catfish in the living room. I read the paper or The Hunger Games and drink my tea. Sometimes I watch MSNBC or Dr. Oz. My cell phone and the home phone are on the table beside me.  I’m ready if one of my daughters or a friend calls.  My body requires rest.

I wish I could tell my mother I understand now.  It’s okay to rest and reflect. She died in 1998.  Maybe she wasn’t depressed.  Maybe her accomplishment was getting to a resting place.

Peace, Mom.

* “Not my mother, not my father, but it’s me O Lord, standin’ in the need of prayer.”  (Click here and then on the title to listen to the hymn by John P. Kee)

Time Out

Adaline is learning about Time Out.  She is 2 1/4 years old with a 6-week-old baby brother.  It took a few weeks for her to start acting out.  Normal temper tantrums now erupt and she throws stuff.  (Directed at her mom and dad, not Atticus, thankfully.)

They consulted Dr. Sears’s Discipline Book.  (Yes, that’s the guy in the Time magazine article.) In our family, we solve problems with information.  Knowledge=Control, you know.

Dr. Sears suggests one minute of Time Out per year of age.  At first, her parents felt so bad about punishing her that they hugged and babied her after the Time Out.  I gently suggested the Time Out might not work well that way, since in the end, Adaline got the attention she was looking for, sightly delayed.  It’s all going better now, I hear.

I’ve spent the last week recovering…slowly…from pneumonia.  Dr. Green told me to stay away from my grandchildren.

Dr. Green put me in Time Out.  Or maybe God did.

“You’d feel awful if you got one of them sick, you know,”  say my daughters and my friends.

I know they’re right, but I’m in withdrawal!

Dr Green told me today that people our age (what??) can take a month to get our energy back after pneumonia.  Great.

My daughters consulted and asked me to please slow down because they need me.  Odd to be on the other side of care-taking.

I feel mortal today.  Angry and disappointed with my body, once again.  My vulnerability shocks me.

It is clear to me that I must stop “doing”.  So I am taking these days of healing to assess how I balance my commitments and my energy.

I have a book called The Extreme Art of Self-Care.  It is time to practice what I preach.

I want to my limited energy to matter.

Change is next on my agenda.  Damn it.

Today Is World Aids Day (Dec. 1, 2011)

There is a giant red ribbon hanging on the front porch of the White House today.

December 1 is still World AIDS Day.  There still is no cure.  People still get sick and die because of AIDS.

People are also living much longer and are taking medicines that really do help slow the progress of the disease.

The drugs that work are very expensive and state and federal programs that help pay for them are in danger of being cut.

Sometimes the side effects and the dosing schedule are so difficult and intolerable that folks stop taking the drugs.

I spend a lot of time helping out at Higher Ground, a day center for people who are HIV positive.   It is a free-standing program of Triad Health Project, the local AIDS service organization.  Three days a week, every week, local churches and other groups provide lunch for 25-40 hungry clients and volunteers and the one paid staff person who tends the souls and cleans the toilets for all who come through the doors.

Higher Ground is a place of acceptance for many who have been turned away by family, churches, and friends.  Believe me when I say, God is in this place and miracles do happen here.  Like crack addicts who are able to stay clean and have their own apartments for the first time in their adult lives thanks to case managers at Triad Health Project and the support and love of peers at Higher Ground.  Or men like my friend Bill who has been HIV positive since the 1980′s.  He had a leg amputated above the knee a while back because of HIV complications and was back at “The House” a few weeks later, smiling.  Many volunteers over the years, from high school students to those of us with gray hair, have been profoundly touched by the courage and faith of the men and women who pass through Higher Ground.

Did you know all this was still happening?

Today, there is much more hope.  But AIDS is not gone.  If you can, please donate your time and/or money to a local AIDS service organization.  They still need you.

Triad Health Project’s vision statement:

We will stand together for as long as it takes until HIV/AIDS is no more, promoting enlightenment, dignity, acceptance, understanding, and love; demonstrating that we are not only enduring this epidemic, but also prevailing over it.

Still.

(This is the same post I wrote a year ago.  It’s all still true.)