Today Is World AIDS Day

Did you know that?

December 1 is still World AIDS Day.  There still is no cure.  People still get sick and die because of HIV/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 HIV/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 (see below).  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.

Originally published December 1, 2010

Link to donate to Triad Health Project:  https://triadhealthproject.salsalabs.org/donate/index.html

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Serenity is…

A way of life absorbed slowly and practiced one day at a time.

Perspective.

Becoming aware of and accepting my many characteristics and not judging what’s “bad” or “good” but what’s useful to keep and what to release.

A spiritual journey without a destination.

Letting go.

Honoring my feelings without aiming them at someone else or letting them run my life.

Accepting what is.

A gift I choose to give myself.

Knowing that what works for someone else may not work for me.

Understanding I may be powerless but I’m not helpless.

Realizing my Higher Power does for me what I cannot do for myself.

Minding my own business.

Balance.

Relief from black and white thinking.

Understanding that reacting to life and responding to life are not the same thing.

Feeling at peace with my past.

Having my body and mind in one place at the same time.

And I Have Good Coverage

I’m not the first.

I won’t be the last.

I’m going to vent about the medical insurance situation in this country.

I have good coverage–AARP Medicare Complete issued through United Health Care.

Yesterday I spent 1 hour and 48 minutes with my cell phone connected to my medical insurance customer service number.  A lot of that time was spent on hold. My battery went down from 72% to 33%.

I ended up as frustrated at the end as I was after the initial 20 minutes on hold before I talked to a live person.  I eventually yelled at that live person.  I never do that. I’m not proud of myself.

I’m not going to try to explain to you what the issue was.  I could, but I’d just relive the anger from yesterday and you don’t really care anyway.  I wouldn’t if you were telling me the story.

Here’s my take on this:

1.  Customer service people are doing the best they can with the training they have.  I get that. But they are not medically trained.  They are trained to follow the directions on a computer screen.  They need pieces of information to fill in the blanks on their screens.  Many of us don’t have short answers that fit in the blanks on their screens.

2.  So they keep asking the same questions and we keep giving them the same answers that don’t fit.  Then we get put on hold “for a few minutes.” I asked my live person to please come back to me. He said he would.  He did.

3.  Then came another set of questions.  My answers still didn’t really fit in the blanks.  They were about the same as my original answers.  Then I went on hold again.

4.  Next, I got “conferenced-in” with another live person.  Three of us were on the line together.  More questions.  More time on hold.

5.  The second live person came back and told me they would be contacting the doctor’s office and would approve or disapprove within 72 hours.

6.  Approval or disapproval wouldn’t answer my original question.  For that, we wait for the claim to be filed and for the insurance to pay their part.  Then we can appeal the part we’re required to pay.  That should be easy to resolve.   And why couldn’t they just tell me that at the beginning?

I am a liberal Democrat.  I am glad people can get insurance now, thanks to Obamacare.

But the same screwball insurance companies are making decisions about my medical care, not my highly-qualified doctors.

AND THIS IS NOT WORKING!!

Okay, thanks.  I needed to get that out.

 

 

 

 

 

 

 

So, I Was Thinking…

Of dirty, musky-smelling potatoes

and greasy, hot, salty french fries.

Of magical carrots pulled out of the dirt

and carrot-colored Cheetos.

Of oat-bread french toast with real butter churned a few miles away at Homeland Creamery

and Yo’ Drops from Plum Organics (click here).

Of bits of scrambled eggs from chickens raised by Milton and Bill

and pediatrician-sanctioned Goldfish crackers for an almost one-year-old still reluctant to eat solid food.

Of a trip to a Farmer’s Market

and a neighborhood a few miles away labeled a “food desert.”

Of Wheat Belly (click here)

and my 91-year-old Aunt Nadine from Iowa who has always eaten “meat and potatoes” meals and makes her own yogurt and can out-walk me.

Of the joy in watching a 3-year-old playing and running in the backyard with a new dog

and the impotent stupor induced by Brian Williams describing whatever new disaster or threat NBC has pictures of.

Of sturdy yellow daffodils poking up while I wear my red wool coat

and the shriveling blooms on the magnolia tree outside my office window because it’s not supposed to be below freezing in NC at the beginning of April.

Of the total unpredictability of weather

and our need to know what to expect about something.

Of triple-pane energy-efficient windows

and the smell of fresh spring air bringing tree pollen to my sinuses through the open window.

Of the fun of shopping with Kristin (with no kids) for Atticus’s 1-year-birthday-party outfit

and the helplessness of not knowing how my spinning head of vertigo ended up lying on the floor of Gymboree at Friendly Shopping Center.

Of how each moment of each day is precious

and how much that is worthy of wonder we choose not to notice.

UNSHAKEABLE LOVE, BROKEN HEARTS AND PRAYER

(for Sarah, Nadine, Betty, Judy, Kay and too many others)

Yesterday, a young man killed his mother and then drove to the school where she taught kindergarten and killed 20 kids ages 5-10.

Why?

How could anyone do that?

I’m kind of glad I don’t understand.  I don’t want his actions to make sense to me.  I don’t want my brain to work that way.

I have more than one friend whose adult sons and daughters live with mental illness.  Sometimes medications help, sometimes they don’t and sometimes they just make people feel weird and they don’t take them.  Sometimes nothing helps.

My friends, their moms, are left with unshakeable love, a broken heart and prayer.

My cousin spent 20 years wandering the country in the grips of schizophrenia.  His illness began in his mid-twenties.  My aunt and uncle knew of no way to help and were afraid to tell their friends.  For most of his years of wandering, my aunt and uncle didn’t know if he was alive or dead. *

They were left with unshakeable love, broken hearts, and prayer.

My friend has spent thousands of dollars trying to find help for her daughter’s bi-polar illness.  No combination of medications works well or for long.  Her daughter, now in her 30’s, lived on the streets at times and now lives with her mom and her teenage daughter in a big house in a beautiful neighborhood near the university.  My friend has legal custody of her granddaughter.

She is left with unshakeable love, a broken heart and prayer.

Last winter, as I sat in front of my gas log fireplace and listened to freezing rain, I wondered about a man I know who had no home.  He was unable to manage an apartment, bills, and grocery shopping, although he wanted to.  He hated going to the shelter.  It’s hard to sleep in a room full of not-so-clean, snoring, farting, crying men who at any moment might start yelling or take your shoes or go through your stuff.  Many of their brains don’t work right.  They are ill.

I learned not to blame.  Schizophrenia and bi-polar illness are diseases of the brain, as surely as my rheumatoid arthritis is a disease of my joints.  I’m lucky.  My medications work.  I have medical insurance to help me pay for non-generic prescriptions and doctor visits and surgeries.  I know people who have no money and no insurance.  They don’t get better.

Mental illness is a powerful force.  It is real.  Medication may or may not help.  Crack and heroin are easier to get and seem to help.  Then they create another set of problems.

Even doctors and physician’s assistants and nurses who really care run out of things to try.

I guess they, too, are left with broken hearts and prayer.

We need to do better.  The mentally ill man (boy, really), begging on the corner of Madison Drive and Market Street is someone’s son or brother.  Yes, maybe he’ll take your $2.00 and buy beer or cheap school wine instead of food.  Why not?  It lessens the pain and stops the questions, for a moment.

Why would anyone walk into an elementary school and kill 20 little boys and girls?  I don’t know.

I do know he was once a baby boy, just like my cousin, just like my grandson.  A child of God, just like all of us.

Jesus said we are to feed the hungry and clothe the naked.  Some of us need more and we are failing them and their parents and brothers and cousins and daughters.

Surely we can offer more than unshakeable love, broken hearts and prayer.

*My cousin, in his 50’s, is okay today, living in an assisted living apartment and helped by an exceptional support agency in Minneapolis, where his brother lives.  My aunt knows that today he is safe and warm.  She is one of the lucky moms.

Baby Bad Ass

I started calling her that shortly after she was born.  It still fits.

Last week I wrote about my granddaughter having heart surgery on September 27.  She did and after a rough first 24 hours, she improves each day.  Today, Sunday, she moved out of ICU, her parents could finally hold her and she is able to nurse on demand.  Last I heard, she was sleeping in her mama’s arms.

Once again, I am amazed at the toll emotional stress takes on my body.  So I rested and napped and read the paper today.  Tomorrow I hope to hold my brave and strong granddaughter.  And her mom and dad.

We are so very grateful for family, friends, medical professionals and medical insurance.  We feel surrounded by all that is good.  Thank God.

Know Your Colors?

Do you remember back in the 80’s when we all tried to figure out what colors “brightened” us and which ones made us look washed out with dark circles under our eyes?  A book called Color Me Beautiful by Carole Jackson started this new quest for personal perfection.

A woman in our neighborhood had her colors analyzed professionally.  From then on, all her clothes were from the appropriate color season.  (I still wonder how she could afford to do that and what she did with her old stuff.)  Most of us just sort of guessed at our color season and then hoped we had a few things in the right colors.

My clothes tend to look the same year after year.  Jeans, t-shirts, black pants, dressier shirts.  My size might change, but not my basic shape or style.  I do like to look at what’s new each season, the colors and styles, but they rarely work for my body or my age or my tastes.  Jeggings?  I think not.

My colors shifted some when I stopped dying my hair.  Some of my gray hairs sparkle like silver and some hairs are still kind of dark.  When it was a warm brown, I couldn’t wear gray.  Now I have tops in several shades of gray.  Why?  My skin color didn’t change.

Several years ago I found the perfect black pants–for me, anyway.  Jjill Sympatico Stretch in petite.  The waist fit.  And the hips, too.  The length was fine.  They needed no alterations.  I bought 3 black and 2 dark gray pairs.  I celebrated.

Then I lost enough weight to drop a size in pants.  I wore those Jjill pants until they were baggy enough to look ridiculous.  No problem, right?  I’ll just get some more in a smaller size.  I looked everywhere on the Jjill website.  They are gone.  Discontinued.  Not available.  Why??

Now I have no nice black pants.  A sixty-year-old woman can only get so far in jeans, even a size smaller.  I have hope.  I found some before and I’ll find some again.

By that time I’ll probably be the old size and will be able to wear the ones that are too big now.  Which I will save, along with the jeans that I used to wear.  What?  You don’t have more than one size clothes in your house?

My husband always asks at these times why I can’t just go into any store and pick something out in my size like he can.  How do I answer him without my voice getting louder and louder as I rant about the stupid, inconsistent sizing in women’s clothing?  And why can’t I?

I got a new Lands End catalog.  I like them and L.L.Bean.  Trendy I’m not. The fall colors  look good.  The one color I know consistently “brightens” me is dark green, forest green, pine green.  Lands End online has a v-neck, 3/4 sleeve tee-shirt in pine green.  I ordered two.  And a silk/cotton blouse in the same color.

I’ve learned not to wait when I see something I like.  And to buy multiples.

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.

Are You in Control of Anything?

God will keep giving us opportunities to learn we are not in control.  I read that in a book this morning.  You know it’s true, don’t you?

I’m getting better about not-so-significant stuff, like lines and being on hold and the whole health insurance mess.  But the big stuff still gets me in the pit of my stomach.  You know that cold, dark, heavy spot in your gut when you know one of your kids is in trouble or really struggling?  (It is one of the few things that can kill my desire to eat.)  That’s when you know you’re not in control and are powerless.  What’s left at that point but anger and prayer and tears?

The retired man I live with struggles with this more than I do, I think.  Yesterday morning plugs in the wall of our house that faces the street stopped working.  Adaline was coming for the day and the tree lights wouldn’t go on.  To him, a major issue.  And, I have to say, a bit unnerving in a 55-year-old house.  No circuits were off so it was kind of weird.

The retired man I live with called an electrician.  They can send someone Monday.  (Yesterday was Thursday.)  So he called my brother who lives 3 hours away but knows a lot about electrician stuff.  For hours they tried to troubleshoot the wiring in that wall.  I told the retired man I live with that I would kill him if I had to call an ambulance for him while Adaline was at our house. He kept at it.

It’s not fixed.  We have no Christmas lights.  He is unhappy.  And not a whole lot of fun to be around.

God keeps giving us chances to learn we are not in control.

I just want to ask why

“I are amazing,”

says a 2-year-old girl.

“Who are you?’ we ask.

“Me!” says a 1 1/2-year-old girl.

These kids are well-loved.  They were planned-for and very welcome.  They are surrounded by caring and supportive adults.  I pray they don’t lose that feeling of delight about themselves.

I doubt they will grow up to be computer hackers.

A hacker got into my yahoo email account.  My contacts got an email asking for money  because I was stranded in Madrid.  I was at a writing retreat at the coast with my phone turned off.   Mike was at home babysitting our granddaughter.  He answered a lot of phone calls from concerned friends.

I’ve changed my password and communicated with yahoo security.  They are investigating.  The hacker erased my address book.  I hope yahoo can get it back for me.  (Please send me an email if you want me to have your email address.)

I really do want to ask the hacker “Why?”  I guess it’s probably about money.

Maybe the hacker wasn’t wanted or loved.  Maybe nobody taught him/her that choices have consequences.  Maybe no one cared enough to teach right and wrong.

Or maybe he/she is just a clever, bored teenager with too much free time.

I think the whole thing is just mean.