LICHEN SCLEROSUS

WARNING:  This is not a dinner conversation kind of blog.  It’s an intimate and embarrassing topic for women and their doctors.  I have lichen sclerosus.

Lichen sclerosus (LIE-kun skluh-ROW-sus) is an uncommon condition that creates patchy, white skin that appears thinner than normal. It usually affects the genital and anal areas.

Anyone can get lichen sclerosus but postmenopausal women are at higher risk.   People with lichen sclerosus are also at an increased risk of squamous cell carcinoma of the affected area.

For the past few years, I’ve been itchy and often a bit smelly down there.  I’ve gone to the doctor thinking it was a yeast infection or bladder infection or some such.  Treatment seemed to work for a bit, but this always returned.  It started in Maui so I thought it was due to the heat and sweat and often changed the 100% cotton panties two or three times a day.  To no avail.

This summer it was time for the PAP and general check up in the nether regions.  Lucky for me there was a new Nurse Practitioner at my Doctor’s office who listened to my mild complaints of itching and odor.  Lichen sclerosus. WHAT?  I’d never heard of such a thing and it sounded scary!  Lichen?  Doesn’t that grow on trees?

Lichen sclerosis is a skin condition that exists in an inconvenient gray area between dermatology and gynecology; it isn’t heavily studied.  She prescribed meds for an infection (just to be on the safe side).  She recommended Dove soap for sensitive skin or Cetaphil cleanser.  She also had me use over the counter cortisone cream on the affected area.  The tube says “never apply to genital area” and I had to call her office to ask if I wrote down her recommendation correctly. 

After about a month of that, the itching wasn’t as bad but still noticeable.  She had to do a vulvar biopsy to assure her diagnosis (ouch!).  Next phase of attack was a prescription corticosteroid  cream. 

My pharmacy did not have a generic so my copay was $120!

The following day I received an email from Icon Undies on this very topic!  If I had been diagnosed earlier, I wouldn’t have as many of the gruesome side effects.  75% of patients have permanent scarring or phimosis (yeh, look that one up!  Fusing of the skin around the clitoris).  Another visual diagnosis was “loss of architecture of the labia minor”.  Which means they are disappearing!

It’s a shocking diagnosis and embarrassing to discuss.  But I wish someone had mentioned it to me a few years ago.

I'M DATING AGAIN

Even I can't believe it!  Actually, there are two guys I've been seeing a lot this week, one on one.

On Tuesday after school, Braeden asked if we could have some alone time.  We checked it out with the parental unit and got permission to have a couple of hours.  He had been sick all weekend and had cabin fever.  After a little after school snack, we went on a search for a machete (or other killing device) to finish his Jason costume (from Friday the 13th shows).  UGH!  Boys are really into gore and blood.  It took a long time to choose (not too heavy since he has to carry it all night).  Then thought we should get something for brother for his Army outfit.  Mission accomplished.

Of course, Deacon was home sick on Weds, and he asked if we could have a tea party!  This past summer, I bought a little blue tea set, thinking I could bribe them into some quiet time.  

And he wanted "real" tea ... not milk or juice.  I brewed a cup of throat relief blend, used a tiny funnel and filled the tea pot.  We had miniature Vanilla wafers that he put on a tiny platter along with one piece of bubble gum for each of us and a tiny piece of candy.  We used real cream and I put sugar in the sugar bowl.

It was a delight!  He did the pouring and serving (pretty good for a 4.5 year old!).  We talked about school and what he liked about it.  And did not want to have brubba join us when he got home from school.  He helped me make a snack plate for Braeden so we could continue our party.  (Fortunately, B's friend came over and they went outside to play, so no feelings were hurt in the making of this tea party). I washed the dishes and he put everything back in the little basket.

I just love alone time with EACH of these guys.

There was no school on Friday, and Deacon came in with his froggy little throat, Gramma?  Wanna go on a date with me?  I wasn't even done with with my morning coffee!  Well, of course!

He got out his leather dress shoes and some dress pants and had Dadda get him a "cool" shirt to wear.  He combed his own hair (I wish I had a photo!).  We put on our jackets and he brought an umbrella and said "let's go to the Clubhouse".  Beaming from ear to ear, he unlocked the door (mostly on his own) and went around turning on the lights as well as the gas fireplace.  Our library has a few games and every time I had to take one of them with me for a meeting, the box of dominoes kept them entertained.

So we played dominoes!  Building towers, matching numbers, playing "war" where whoever had the most dots won the battle.

He got to sit in the "big boy" car seat so I could drive through the post office then stop at our Adult Center to drop off some papers.  He came in with me and was the delight of the afternoon.  He shook hands, spoke his name clearly and loved when I told people he was my date.

And he always will be!

INSTEAD OF 1,000 WORDS

DEATH and DYING, FRIENDS and FAMILY

I suppose it comes with my age.  I have quite a few family and friends who have recently died and still a few with hospice or 24/7 Medicaid care. 

Having new people around to help care for you is hard work for the sick and/or elderly.   Especially as a lot of the low level stuff is done by people who don't speak English very well.  Which would make me get a Nanny Cam for sure.  How do we know they are getting the right medicine at the right time ... can these folks read English?  So much to be concerned about, especially money.

Though it seems easier for me to talk with these folks, after having Mr. Ralph go through a rather short term time of pain and suffering, it is still something I need to bolster myself up to go visit.  One friend is no longer eating and hasn't been awake for visitors for over a week.  Last week I visited.  Non responsive.  I patted her shoulder, rubbed her arms, massaged her head.  She would smile but not open her eyes or speak.  I consider myself a chatterbox but it's hard work to have a one way talk.  Exhausting.  I'm glad I made time during the past 6 months to visit and chat and even take her to Dr appointments and lunch while she was still able to enjoy. 

My sister-in-law is a Hospice nurse and has been for almost 40 years.  What angels these people are!  Mr. Ralph's hospice nurse still keeps in touch via Facebook.  They are ALL about the client.  And they taught me as well.  Get the person's attention.  If I talked with Mr. Ralph and he was reading email, chances are he would not even hear me.  Set a positive mood for interaction. For me, getting him to take medication was not easy.  I'd phrase it "where would you like to go for a drive after you take your meds this morning?"

State your message clearly. Ask simple, answerable questions, while holding hands or looking into his eyes. 

Listen with your ears, eyes, and heart.  When the going gets tough, distract and redirect.  I was pretty much a pro here!  Most importantly, keep your sense of humor.  It goes a long, long way.

KIDS SAY THE DARNDEST THINGS

Kids pick up on everything.  Sometimes I suggest that we not have the news on around them.  I went in the boys room the other day to see what Deacon was up to ... he ordered "don't come in here, Gramma!  We are evacuating because of hurricane flooding".  Four and a half.

The kidults have a busy day today so I volunteered to take Braeden (almost 8!) and his fragile cereal box creation to school today. 

As my reward, I stopped by Starbucks and got myself a coffee and brought Deacon a warm vanilla steamer and a giant bagel.  I reminded him to take a small sip to be sure it wasn't toooo hot.  "Can you please bring me a icicle to cool dis off, Gramma?"

Braeden's favorite phrase (of Second Grade) "You don't have to remind me, Gramma, I'm not a baby anymore"  This kid practically gets himself up and off to the bus by 7:30.  Takes a shower every morning (it wakes me up!)  The parents now have morning school duty and lunch packing.  I just don't want to get up that early!  I treat once a week for lunch when there is something that he thinks he will like ($3.50!)  The school puts out the menu every month.  His favorite is breakfast for lunch.

Deacon needed to use the bathroom after I had finished and apparently I didn't smell like a rose that morning.  "What dat tinky mell?" I told him.  "Make bacon, Gramma!"  Since he had just had breakfast I asked "are you still hungry and want bacon?"  "No!  Make bacon and our whole house mell good!"

Following that, Braeden showed me that I should light a match!  Others in this family do that. Living close together .... no secrets!

My most favorite so far was last night.  Braeden wanted to get some of his money to buy something from the School Store.  I have a safe in my room, so I got his envelope for him.  He decided on $3 and then asked "can I give some of my money to the poor people" "did you know some kids are not as lucky as me?"

My heart melted.

MID-OCTOBER ALREADY?

Our pool just closed a week ago.  Our weather is in  the high 70's with lots and lots of sunshine.  The leaves are changing, right on schedule.  Mother Nature does share some wonderful things (as well as hurricanes and floods and wildfires and tsunami and ...)  But really?  Where does the time go?

I found an app for my phone called "Christmas Countdown" which tells me how many days (and hours and minutes) til the big day.  It creeps up faster and faster every year.

Speaking of creeping ... or creepy!  Halloween with boys is a whole other story.  One wants to be Jason, the creepy killer from the Friday the 13th series.  Gruesome.  The other wants to be a zombie with "lotsa lotsa blood."  Mom has done a few craft projects that are cute but honestly, they just want to make things creepy.

(From Pinterest ... I can't get a good picture of hours)

Ping pong balls with battery powered tea light inside.  They had great fun making them.  And then shooting them with nerf guns. 

I love this one.  String around a balloon.  We have a lamp that it sits on so it looks like it is lit up.

Last but not least ...

A spider eating a baby doll.  They are going to rip off one limb and add blood.

THE WEDDING CEREMONY

I lost my booklet outlining the wedding ceremony.  My sister graciously sent me the English version to clarify a few things for me (she obviously reads this blog).  Thank goodness for technology!!

The original booklet had both Hebrew and English.  This is what she sent ~

WEDDING CEREMONY PROGRAM

09.28.18

Kippah/Yarmulke  Please feel free to wear a kippah during the wedding ceremony. It’s a sign of respect, and also a lovely memento of this special day!

Pre-Wedding Ceremony Ceremonies

While you’ve been busy finding your seats and putting on a kippah, the bride and groom have been conducting a Chinese tea ceremony to honor their families as they become relatives of each other.

After that, they read and sign their ketubah, a traditional Jewish marriage contract. This has beautiful words and art that they will see in their home every day to remind them of their love and connection.

Chuppah

Most of the wedding ceremony occurs under a chuppah, or marriage canopy.  The chuppah represents the shelter and privacy of the home that the bride & groom will create together, with the open sides representing hospitality to their guests.

Processional

The groom is escorted by his parents to the chuppah.

The Maid of Honor, Best Man, bridesmaids and groomsmen now proceed to the chuppah to be witnesses to today’s simcha (joyous event).

The bride is escorted by her parents to the chuppah where she will join the groom.

Circling

The bride and groom each circle the other three times, and then once together.  This makes seven circles, which symbolize the wholeness they build together.  Seven is a powerful number in Judaism, representing creation, good fortune and blessing.

The Ceremony

Welcome

Blessing over the Wine and first sip from the Kiddush Cup

Shehechiyanu  - a traditional blessing recited the first time you do something each year and to mark joyous occasions.

Ring Ceremony

Seven Blessings

Here’s that special number 7 again! These represent the many joys of creation, including the bride and groom creating a new life together today.

Second Sip of Wine from the Kiddush Cup

Breaking the Glass

As we hear this glass shatter, let it remind us of the power love has to make the world a better place, and to know that the newlyweds’ love will be a positive force in our world.

It’s traditional to shout “Mazel tov!” when you hear the glass break, wishing goodness and congratulations to the newly married couple.

Pronouncement of Marriage

Before the final pronouncement, know that after this happy couple leaves the chuppah, they will share a quiet moment together in a private place. This is called yichud (“seclusion”). They will then join us for cheers and canapés before we’re seated for dinner.