2nd ASAP Support Group Meeting May 3, 2014

New Member, LaTonya and I.

New Member, Taren and I.  Taren becomes a Zipperhead May 13, 2014.
(Not sure why this captured my cell phone info)

Our fearless leader (and my sweet friend) Simone..with my birthday cake!
Yes they did the very sweet..and embarrassing..singing thing.
Very special..Thanks Guys!

Five new members this meeting! 

Vonda welcoming new member, Cherrilynn (hope I spelled that correctly)

So much to share and learn in such a brief time!

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Our Brain Crunch Brunch  Group
and a quick thank you to my husband, Bob, not pictured because he was the photographer!

Our second meeting was yesterday.  I was thankful to be able to go.  I will admit, I was also glad to get back home and into bed, where I stayed the rest of the afternoon and evening.
There is so much to learn from the experiences of others. We all have something important to share.
I left this meeting with the same warm feeling as when I left the first.
No, not with a fever.
I left with the feeling that something remarkable just happened.
I hope everyone felt that way.
I don't know how to describe the feeling of looking into someone else's eyes and seeing love like this.
It's different than romantic love, or parental love.
There is an empathy, an understanding, a bond.

If you live in an area with no support group, I urge you to start your own.  I know there are groups online, but there is such a difference when you are face to face with actual, real human beings.
The isolation of this condition can be horrific.
I feel very alone most all the time.
Reach out to others and make a difference.
I'm so glad I said, "Yes!" when Simone asked if I'd join her in this.
Someone is out there waiting for you to make the first bold move.
Do it- You will be glad you did!

My Imperfect List of Top 10 Things to Not Do After Brain Surgery

Disclaimer:  These are the things that stand out most to me. Use your own judgment and always discuss with your doctor when in question.  THIS IS NOT MEDICAL ADVICE.

My Top 10 Things to NOT Do After Brain Surgery:

10.  Don't try using a WEDGE pillow- the people that  bragged on these things should be strung up- they are miserably uncomfortable.  Use pillows you love and stack them. You will not be comfortable laying completely flat for at least 12 months because this increases the pressurized feeling in your head. I was determined the people that recommended this expensive sleeping apparatus knew what they were talking about and wrestled with it for a few weeks before actually returning it to Bed Bath and Beyond (they are about $59).
9.   Don't let your narcotics dictate your food choices.  To me opiates whisper these two things in my ear- "Cheez-Its" "Reese's Peanut Butter Cups". Have a plan beforehand.  Whomever your caregiver is..be firm.  They will give you whatever you say you want to eat when you have a fresh zipper in the back of your head...This is FACT.  Junk food on an already compromised adrenal system will result in a weight management nightmare.
8.   Don't go home without a prescription for nausea medication and muscle relaxers.  Oddly enough, the docs are good at throwing out opiates but tend to forget these other two very important pharmaceutical jewels.  Ask for sublingual Zofran-it works quickest-  and your favorite muscle relaxer. If you don't have a favorite, borrow mine: Flexeril 10 mg.  Otherwise when you throw up..and you will throw up, (a combo of dizziness and nausea from the pain meds..) you will have painful spasms in your neck and shoulders (guess how I know?!)..head these off at the pass..ASK FOR THE DRUGS!
7.  Don't skip taking your stool softeners.   No one likes to talk about poo.  Poo is not a popular topic.
You won't even think of poo because you will be glad you don't have to get out of bed to go.  But listen to me on this..Day 5 or 6 post op, it will cross your mind, or the doctor will ask you when he calls you post op.  Then, your focus will become poo..or the lack thereof.  Everyone in the hour will talk about your poo. You will have poo peer pressure. Straining will cause increased head pressure, pain and spasms.  Magnesium Citrate is your friend.  Buy some preoperatively and put it in the fridge (you can find it at Walgreens or CVS, lemon-lime or grape are the best flavors...guess how I know). Go ahead, get some Miralax and a stool softener (ask your pharmacist what works best).  You will thank me later, I promise.
6.  Don't wash your hair with baby shampoo.  I did this at the recommendation of a well-meaning person in a FB group.  The docs don't really specify a shampoo..and this is harsh on your hair. Your hair will change texture a bit as it is, no need to help it turn into straw.  Dry shampoos work well for a clean feeling (which is short-lived), but once you start shampooing, use conditioning shampoo. My hair took over a year to get back to it's original texture with this first surgery (I used Burt's Bees Baby Shampoo the first go 'round).  This time I used Giovanni Organic Shampoo and Conditioner..and Kerastase Nectar Moisturizing cream..much better).
5.  Don't look at your incision immediately upon bandage removal.  If you've seen Frankenstein (or my post-op photos)- you can bet you will look just as horrible.  You will break down and cry like a baby even though all this time you've been looking at the photos of others and knowing how it will look.  A day or two later is better to look, after exposure to the air, the inflammation is decreased and it doesn't look as frightening.
4.  Don't  go without lip balm on your lips for any length of time the first 2-3 weeks. Your lips will crack, peel and bleed.  Drink, Drink, Drink water. Your body needs to stay hydrated to keep your lips, skin healthy during this physically traumatic time.
3.  Don't under hydrate prior to and after surgery. Drink, Drink, Drink water prior to surgery (NOT DAY OF), you will be told to not eat or drink after midnight the night before..follow that rule, however, prior to that time, hydrate as much as possible.  You will wake up with multiple IV's, probably and arterial line and possibly a central line.  I woke up with a 14 gauge (that's a very large gauge) IV in my foot the first time because I was dehydrated.  I am usually an easy stick, but I guess being anxious I didn't think to drink.  So-you remember: THINK TO DRINK!
2.  Don't tease the poor nurse who is starting your IV before surgery or re-sticking you after surgery.  Being a nurse myself, I teased my nurse (1st surgery). I told her I am an easy stick and if she couldn't get an IV started on me, she needed a new profession.  I was laughing, of course.... until she couldn't get an IV started and had to stick me multiple times and ask for assistance.  I woke up looking like I had wrestled with a porcupine.  I had the 14 gauge in my foot, an IV in each hand, one in my forearm and an art. line. The ICU nurse told me they had lots of trouble getting patent IV's on me.  So with surgery #2, I gulped water down the entire week before and I DIDN'T TEASE THE NURSE.  I'm not sure which worked for me..but I had only two regular IV's.. a 20 gauge and and 18 gauge and an arterial line when I woke up. They were able to discontinue my central line in the OR.
1.   Don't talk your mom..or anyone  else into coloring your hair right after surgery.  Around day 7 or post-op (second surgery), my hair color looked horrible to me.  I couldn't just be happy being alive. I wanted to look alive. Big dark circles were under my eyes, bruises on my temples, swollen, painful spots from the head fixator stuck out of my hairline, my hands, arms and neck were bruised from the IV's and central line, my lips were cracked and my nails were paper thin from me removing the Shellac from them a few days before surgery. For some reason, I just got fixated on my hair.  l sent my mom to Walgreens for necessities, magnesium citrate, pre-packaged enemas (just in case) and Garnier Nutrisse Haircolor: Darkest Brown.  What do you think we did first?  Drink the mag citrate?..No Way! Once glance at the clock told us Bob wouldn't be home from work for another 45 minutes. So, we used an occlusive dressing, covered my incision and Mom colored my hair.  I sat still for 25 minutes, holding my head up on my own while the color set in. It never occurred to me that it would hurt like the dickens to rinse out. See, the nerve endings around the hair follicles are so super sore, even today, 17 days post op, my head feels raw. I still only gingerly brush it. So, when my mom started rinsing out the color...two things happened. 1: I had spasms when I bent my head over to rinse it, so I was in massive internal pain and 2: I couldn't bear her rubbing my scalp because it was so sore, so she didn't. Fast forward to few days later, I keep noticing my fingernails are dirty.  I'm constantly washing my hands and complaining until I realized, "Hey, Einstein, you keep scratching your head, which is covered in hair color still...that's not dirt..it's Garnier Nutrisse Darkest Brown!"   Yes, I admit it..I did that, all on my own! So please, color your hair a week or so prior to surgery and save yourself some pain and embarrassment!

SO that's my list..use it for what you will.   Other, more informative lists can be found on various FB Chiari group pages and on Chiarisupport.org (the Ben's Friend's site).

"Politics makes strange bedfellows" -- Charles Dudley Warner

I guess we've all heard this famous quote by C. D. Warner. 

"Politics makes strange bedfellows." 

Honestly, I had to look up the quote to see who actually said it. 

I've spend the past 12 days either preparing for surgery, being tested for surgery, having surgery or fighting off the pain of surgery. 

What does this have to do with politics?  

Nothing.

It's more the "strange bedfellows" I'm  rolling around in my head. 

The invisible tethers that lately have bound me to total strangers-

Ties that are strong and unbreakable that will join me with people I would have never met otherwise. 

Friends/family of choice rather than blood lines or acquaintance. 

I feel blessed, fortunate and smiled upon by God to have met these bedfellows.

I see just a glimpse of what He has in store for me through them. 

I'm not a typical person.  At least I don't think so.  I'm not saying I am above or below average. 

Just not typical.

I grew up in a small, rural community. I had friends there, but never felt I belonged there. 

I yearned for bright lights, big city...excitement, culture, to see things, go places, experience the world. 

I've done just that. 

I've lived quietly in the country and out loud in the city, 

I've gardened, homeschooled and made my own bread. 

I've traveled, stayed put and broken free. 

I've traveled by train, plane and automobile, 

the Metro, the Tube and the Subway. 

I've met strangers, found friends and acquired family of choice. 

I'm blessed. I'm fortunate..and I am real.

 It's the "being real" I'm most proud of. 

So now back to the bedfellows....

Having an obscure brain disorder (or in my case, disorders) has been more of a blessing than a curse. 

I've met the most amazing people along the way. 

A few weeks ago I wrote of finally meeting Katrina.  

After about a year of online banter, we met for lunch. 

Then she opened her home to me. 

Literally.

Opened her home. She picked me up at the airport, took me to her home, I had my own little cabin in her backyard. She fed me, took me to my doctors appointments, had a birthday breakfast for me (with the help of her friend Misty-whom I love, love, love), transported me back and forth from Houston to Dayton to Baytown to Dayton to Baytown..(you get the picture).

I was treated as a queen.  The kindness of a virtual stranger touched my heart in ways I will never be able to fully express.

I sat there, looking at her on my last day at her home..thinking of some of my "lifelong" friends that have never shown me this much kindness, this much love. 

What makes the difference? 

Is it the brain thing? Is it merely the fact that we have similar zippers? If we had met under other circumstances..would we be friends? 

I'd like to think so. 

Is it because we are both realists? Both givers? Both loyal? 

Or because we both know what it's like to be hurt by those people you expect the most from? 

I think it's because we know what it's like to look fear in the face, to not take good days for granted, 

to cry in the shower so no one hears, to feel abandoned by "friends", 

to feel like a disappointment to our spouses and to feel guilty for complaining about our problems when we know things could be so much worse.

I think it's all of the above and even more. 

I'm nine days post op today for my second craniotomy in sixteen months. 

My body is tired, broken and sore. My spirit is wounded, worn and bruised. 

So forgive this melancholy post about bedfellows. 

Attribute it to the pain meds, lack of sleep  or cabin fever. 

But do me a favor- be real. Take it to heart. Pay it forward. 

Either be all in or all out. Be a friend or don't.  Identify who you are to others, who you portray yourself to be in their lives..and be THAT.  You can't be a BFF and not rise to the occasion when the going gets tough. If you can't follow through, get out of the game. 

If you don't promise what you can't deliver then no one gets hurt. 

Everyone is in need of (and deserves) grace. 

Everyone. 

So, Charles Dudley Warner, I beg to differ.  You stated, "Politics makes strange bedfellows." 

I think you are quite wrong. 

I think REALISM makes strange bedfellows. By exemplifying the Golden Rule, following through, offering grace, doing the right thing, showing even the merest form of personal integrity,

We set ourselves apart, strangers to the majority of the world...

When we meet a kindred soul, it doesn't matter the situation, background, race, sex or social standing. 

We become bedfellows. 

We've made our bed--now we have to sleep in it. 

So thank you, Katrina. 

Yes, we are linked together by this  enemy we call Chiari- 

But your personal integrity, kindness and love for a virtual stranger have made you my sister. 

I'm so honored to call you my friend.