Alter Everything

Day 209: Prayers for Juliana

"Jewels" on a better day with her son Johnny.

A while back, I wrote a post entitled With Love to Juliana. 
It wasn't an accidental title.
It was a tribute to a real person,
a real angel,
to somebody who changed my life
...Juliana King.
Juliana and I were brought together by fate via a Lyme FB support group.
I blog.
She blogs.
We both have Chronic Lyme Disease.
We also like the same You Tube Videos, Post Secret posts, quotes, etc.
It truly was a match made in heaven.

On my worst days,
it's Juliana who makes me smile.
On her worst days,
she does the same....
sending notes when she can,
spreading sunlight on my wall,
worrying about my insomnia and pain...
even though she can hardly lift her head.

Although we've only known each other a short time,
her impact has been profound.
She taught me to be positive.
She taught me to be grateful.
She made me appreciate the good days.
She also showed me “It’s not about who you’ve known the longest
…it’s about who came and never left your side.”

Now, the girl who loves and supports so many,
needs our love and support.
I love you, Juliana.
We love you, Juliana.
You can pull through this.
You will pull through this.
As you would say...
Never Give Up...Miracles Happen Every Day!!!!

  
Can't wait to see you smile again.
XOXOXOX

Altered Today: Juliana's Health.  Please post your uplifting quotes, videos, wishes, and prayers for Juliana by friending her here. I don't know when she will get to reading them, but I know they will make her day. 

Day 206: Time for Tea 2011

Lots to experience at today's gluten free/sugar free tea party.


 
Food...

Friends...

 
 

Fun...

Love...
 


I am tired, but it's good tired; the way you are when you trade a day for something worthwhile. Thank you Debbie, Denise, and Angel for making this possible and thanks to everyone who attended. This was one of the best afternoons I've had in almost a year.

I love you and miss you already.

XOXOX

Altered Today: Memories, Friendships, Well Being

Day 197: What She Said

Do you have any goofy sayings?  You know, the ones passed down from family member to family member?  Maybe, you made them up in grade school. Maybe, they are something you only say to your dog. Maybe, they are some really chopped up version of what a word should actually be.

I have several in my world:
-I call my dog and almost anything I adore Bup-pa.
-My oldest, bestest friend and I always say "Surely...but the time we're _________(50, well, employed, full, rich...)"
-If I love you, I will at some point tell you "I'd cry if you died"
-I say HubbaBaLou (rather than Hullabaloo)
-"I'll put a pin in that" is a recent addition (thanks, Barb)
-And probably a dozen other things that only those who are closest to me or who have listened to me talk for any extended period of time would have some input on

Today, however, I heard a new one; one I love and am totally going to steal. It made it's debut while I was on the phone with my friend Marcella.

Marcella: How are you feeling?
Me:  Really good. You know.  I am not 100% (more like 75%), but I have been getting out...got my hair done, haven't been napping, been visiting with friends. It's amazing. I think I'm getting better.
Marcella: Oooooh... I'm squeezing my butt cheeks for you.

(Scooby Doo)...HUH?

Translation?  Apparently, in Marcella speak, "squeezing your butt cheeks" is the equivalent of knocking on wood ....which is another funny expression people say when they don't want to jinx something.

Squeeze away, Marcella. Squeeze away.

What you talkin' about Willis?

Altered Today: Silly sayings, Knockin' on Everything.

Day 184: Celebrating the Small Stuff

Image from http://m.demotivation.us/

Man...have you ever had pan seared turkey breast? Nothing fancy. A little olive oil. Sea Salt. White Pepper. And Mmmwaaahhhh! I swear I am going to be featured on Top Chef one of these seasons.  I don't know why I haven't cooked it before. It certainly fits the dietary restrictions...protein, protein, veg, protein.  I guess when I think of turkey, I think of Thanksgiving, broilers, and Butterballs (nice to know you can teach an old dog new tricks).

I can already feel the Tryptophan going to work (you're getting sleepy...very, very sleepy).

Now...for a quick nap before a couple of friends show up (God love them. They are coming to help with yard work and insurance paperwork).

To create your own inspired recipes, check out one of my favorite Lyme-friendly, cooking sites Affairs of Living.  There's a lot of good stuff on there. I've been eyeing this pumpkin pie recipe for months. Don't know why I love pumpkin so much. For some reason, it just makes me smile.

Altered Today: Letting friends help, trying new foods, actually moving items off a to do list, 2 hour nap instead of 4 (hey, it's progress), letting myself ramble.

Day 180: A Tribute to Greatness -- Why You Are My Hero

engravedwithmusic.deviantart.com

People are amazing. As I write this, one friend is sitting, eyes jumping back and forth, questioning if she should go to the ER. Another friend is sending her son back to Iraq (on top of Lyme). Another friend's bed bound...wanting nothing more than to get up without fainting and be with her family. It's sad. It completely depresses me. It also makes me profoundly appreciative for the strength of the human spirit.

We hear a lot about heroes: people celebrated for rushing into battle, fighting crime, and saving children. I LOVE those people. I am so thankful for them. But it also has me thinking.  What about the other folks...the ones who don't have a day or get an award?

-The mom who refuses to have surgery on her shattered knee or take pain meds for six months because she doesn't want to hurt her unborn child.
-The person who can't walk and can't breathe, but still takes a moment to ask how you're doing.
-The spouse who holds you while you wince and cry...even though he feels helpless to stop it.
-The dad who tells his kid "everything is going to be ok," even though he's scared that it won't.

I have met these people...and many, many others. And all of them remind me what I treasure most about humanity: People are good. They are also strong, resourceful, and capable of wonderful, amazing things.

Happy Memorial Day to all of the really good/strong/resourceful/capable people I know and the ones I have yet to meet.  Your courage is my strength and your friendship my reward.  I only hope one day I can return the favor.


Altered Today: Remembering Greatness.

Day 178: Power and Perspective with Chronic Illness

Lately, I've been thinking a lot about choices:
-How I choose to respond to illness
-How I choose to approach obstacles
-What I choose to make of my life now that so much of it seems out of my control

Sometimes, just remembering I have a choice seems impossible (It's easier to get swept up in fear, sadness, or pain).  Other times, I confuse having a choice with liking the options or being positive (ie: If I choose to accept illness does that mean I agree with it? If I choose to cry today is that less valuable than choosing to smile?).

For example, one of the things I have been really been struggling with lately is friendships.  Before getting sick, I was a pretty busy person. I volunteered a lot, talked to people intermittently by phone or text, ran a business, saw friends once a month or every few months, and relished LOW MAINTENANCE relationships (ie: people who understood that I loved them even if we didn't speak or I forgot their birthday).

NOW, 10 months later, things are different. I am home almost 24 hours a day. I don't volunteer. I don't work. I feel like crap. I crave meaningful interaction.  And when people don't call, don't follow my blog, don't comment on Facebook, or don't check in on me, I immediately jump to one conclusion:  they don't care.

Isn't it Ironic ???

Funny thing is... I am the one who changed.  My friends are just sticking to the plan..."call if you need me."  Even funnier, somewhere along the way, I completely forgot I have a choice (actually several).

Choice #1 -- I can pretend people don't love me, they never loved me, and I no longer matter (very disempowering).

Choice #2 -- I can believe people are giving me space. They are going through something themselves. It's hard for them to see me like this. They don't get it.  They're busy.  They are confronted by their own mortality.

Choice #3 -- I can get off my butt, give people a call, or invite them over (although if they don't call back or come that will probably lead me to option 1, 2, or 5).

Choice #4 -- I can be grateful for the time we spent together, accept that we are in different phases of life, and move on.

Choice #5 -- I can be angry -- really angry.

For now, I am not sure it matters what option I choose. But remembering I have options?  Now that makes a difference. 

Altered Today: Power, Perspective, and Peace of Mind

Day 176: You're Invited -- Tic Toc, Tic Toc!

 
A Fanciful Twist

Being sick gets lonely
and boring too.
We don't eat sweets.
There's not much to do.

It's hard to get out.
We mostly just write.
But what if that changes?
If just for one night?

What if, one day,
Despite how we feel,
We all get together
and share one great meal?

They'll be tea cakes, and muffins, and sweet treats* galore.
All that's needed is you
to walk through the door.

Can't make it in person?
That still will be fine.
Log in by computer
and join us on line.**

To RSVP Now,
Just comment below.
A fun time is waiting.
Let's give it a go.

To RSVP....

Festivities begin Saturday, June 25th @ 2:00pm at my home in Winter Park, Florida. 
Healthy and Sick Friends welcome, but adults only please. 

*Participants must bring one gluten- free, sugar-free treat large enough to share with at least 10 people.  Please label your product if also contains nuts or dairy.  Natural sweeteners--Agave, Stevia, Xylitol, Mylitol--only....no artificial sweeteners allowed. Homemade items are especially loved and appreciated.  Raphsodic Bakery and Natural Delights also offer Healthy Options for pre-order.

**When you RSVP, please specify if you will be attending in person or virtually. If you will be attending virtually and you blog, please link to this post on your site and host your own party on the 25th
(then send me the link on that day so I can link back to you).

Can't wait to see you!

Altered Today: First Tea Party, 2nd IV Treatment, First Virtual Event.

Day 175: With Love to Juliana (and all the Juliana's in my Life)

www.postsecret.com

Every day I live with chronic illness...
I am strengthened.
Humbled.
Confused.
Amazed.

It is a surreal world.
Filled with
fear
hope
pain
disappointment
and surprises.

Life ends.
Journeys begin.

And people -- often those you least expect -- reach out.
Sending love, wisdom, postcards, and possibilities.

I didn't know
I was sad.

I didn't know
I needed to talk.

I didn't know Angels
use Facebook,
can't walk,
have IV's,
or require oxygen.

It's amazing what you can learn
when you listen.


Altered Today: Appreciation for my new (and old) friends (you know who you are). 
Thank you for giving me the best gift of all...perspective. XOXOX

Day 167: LIVING! With Chronic Illness

Today is a GOOD day. I woke up with energy. Could raise my arms enough to shower. Pain is not beating me in the side or the head or the legs.  Call me happy (nice to know this can still happen). That said, I am not going to spend today inside, on my chair, staring out the window. I am going to go outside..at least while I can and get some air.  To fill in...my friend Laina is making her blogging debut. I love Laina (and you will too)  She's wonderful and has been a real Angel to me. (Insert loud applause here...) AT: Turing off the computer, sharing my angels...

Hi everyone!

I’m Laina, Kathy’s friend in Denmark (recently emigrated from Texas). 
 
I sent her a letter in response to her video on Day 82: Tired of Being Sick. After watching that video I was compelled to reach out to her. Not really sure if my letter would do anything, but I had to at least try. I sent it off to Florida the next morning. About a week later I was reading through all my blogs on Google Reader and saw the title of Kathy’s post, Day 90: Touched by an Angel.  I was in tears immediately after reading the title alone.

Since then, she and I have kept in touch via e-mail. We’d e-mailed back and forth several times when I received a package from her. Like an anxious little kid at Christmas, I opened up the package and inside was a beautiful little wire bound journal. The front reads: “Aspire to Be." (How appropriate!) Included with the journal was a wonderful letter. Towards the end of the letter, Kathy asked me if I would be interested in doing a guest post on here. It’s probably a good thing we’d talked a bit otherwise I likely would’ve been too chicken shit.

I’ve been thinking about starting a blog of my own (I’m a blogging virgin), but have yet to make that commitment. I’ve got a lot to say and I hope I can do this post justice without it dragging on forever. So, today I am jumping in head first. I’m a bit nervous, but mostly excited about the opportunity.

On to the topic at hand, LIVING! With Chronic Illness.

I’ve been dealing with chronic pain for about 10 years and polycystic ovarian syndrome (PCO/PCOS/PCOD) for about 17 years. The pain was the result of a pretty bad car wreck.

After struggling to cope with the pain and doctors thinking it was in my head or I was drug seeking I was FINALLY diagnosed with thoracic outlet syndrome in May 2010. It was frustrating as hell trying to get them to believe me.

Being in the medical profession myself, I could understand where they were coming from. I saw patients all the time who were truly drug seeking. The addictions can be quite severe and the withdrawals are excruciatingly painful. That’s a big reason I strongly advise using caution when taking any meds that are addicting (or have the potential to be).

Over the years, I’ve slowly learned how to live with the pain, as well as the depression coupled with it. I’ve had pain meds and muscle relaxers, which I treated as if they were gold. I was always saving them, just in case I ran out.

I had one doctor decide that he needed to ‘pop’ my back instead of giving me something for the pain and spasms. I must say, I felt amazing afterwards! Unfortunately, that lasted for a whopping 30 minutes before my pains returned, and worse than previously. I’ve also tried diet and exercise. Mind you, I couldn’t even hold my arms up long enough to blow dry my hair, so the exercise part was a joke for me (at least at that time).

In March 2010, I had an awful ear infection. I went to the doctor probably 5 or 6 times in the course of about 5 weeks. I was on antibiotics (both pills and drops), steroids, pain meds, and I don’t even remember what else. They sent me to an ENT (ear, nose, and throat doctor). He looked in my ears and then took me under the microscope. Apparently, I had one hell of an infection.

In the end, what had happened was my chronic spasms were also spasming around my ear canal. The ear canals were getting irritated, inflamed, and wet. Because of that, I had a plethora of yeast in there. He told me the only way to ensure this doesn’t happen again is to stop the spasms. So, with that I had to go for an MRI of my cervical and thoracic spine.

Everyone was surprised to find out that my MRI was completely negative. I was in tears over it, and they weren’t happy tears. I was pissed. I wanted to throw a tantrum like a 2-year old over those results. I wanted it to be a bulging or ruptured disc. I needed visual proof there was something wrong with me! I wanted to rub it in the doctors’ faces. Then, I began thinking it was all in my head.
From there I was referred to a physiatrist (rehab/physical therapy doctor). He sent me to physical therapy. They were all surprised to see my MRI was negative, as well.

The physical therapist who did my evaluation said that with my range of motion and muscle atrophy, I was a classic case of a ruptured disc (or more). I began therapy and had multiple steroid shots (like 16-20 every visit) in my neck and back for about 3 months. These were very helpful, but the effect was highly localized and only lasted 4-6 weeks.

I moved to Denmark in August 2010, and without the shots and the PT the pain returned, with a vengeance. I had another ear infection 2 days before Christmas, and had to go see another ENT (over a month later). He pissed me off. He dismissed everything I said, treating me as if I was a child who just likes to stick my fingers in my ears. I was so mad I was shaking. My husband tried to reiterate my point to him. He was ready to send me on my merry way and then asked me if I wanted to have my hearing tested while I was there. We did that, and afterwards went back into the doctor’s office. This time his attitude seemed to have changed a bit. He realized that even though my ears didn’t look like anything was wrong, there was damage. My hearing sucks. Anyone who knows me knows that. Now, not even 30 years old, I get hearing aids.

Since then, I’ve been to my family doctor, a dietician, and a gynecologist. I’ve got tons of meds to take, and I’m watching everything I put in my mouth. I’m exercising daily, meditating, and trying to take things one day at a time.

I’ve had some rough days. Some days where I hurt so bad I don’t get out of bed all day. Those are the days I rely heavily on my husband. He is wonderful about it, and will bend over backwards to help me out. Some days I feel so shitty that I tell him first thing in the morning that all I want is to lie in bed and be snuggled all day long, but I am trying to push myself everyday.

I have tried several things to relieve the pain and depression over the years. I don’t know if you will try any, or if you have tried any, but it wouldn’t hurt giving any of them a chance.

• Yoga

 

• Meditation or Chakra Balancing - You can meditate for healing, energy, calm, anything.

 

• Massage

 

• Aromatherapy - Can also be used with massage.

 

• Color therapy - I am working on adding more color to my white-walled apartment. You can even buy a rainbow of colored glasses to wear if you want.

 

• Music therapy - Sing a song, or just listen to something that make you feel relaxed, energetic, whatever you’re needing that day…or hour.

 

• Healthy living – While this may not make your problems go away, it will aid your body in healing itself. Over time, your energy levels will rise and your pains will likely decrease.

 

• Positive thinking - I know that can be hard on the days you feel like absolute crap. I suggest recording your happy, healthy, energetic feeling self a pep talk. Watch or listen to that, as many times as it takes to help you through that hump.

 

• Let others inside – The people around you care a lot more than you give them credit for. Don’t hide away, and don’t try to suffer in silence.

 

• Take a nap, or stay in bed all day - Some days can be so bad that it’s best to avoid the day altogether. However, I don’t recommend doing this often.

 

• Be thankful for the day you have been given

 

• Take a long hot shower (or bath)

 

• Psychotherapy - I’ve been going to therapy for the past 16 years, and it works. There are also pain therapists out there. I’ve not been to one, but I have relatives who have. I highly recommend this option. If you’re never been to a therapist before, don’t go in thinking they will fix you. They are there to give you the tools and confidence to help yourself.

 

• Take it one day at a time - If one day is too large of a goal, start with a minute or 5 minutes and work your way up, just remember to not sell yourself short.

Believe that your mind is stronger than your body. You are the one in control. Good luck with your journey!


P.S. I’ve decided to set a goal for myself, right now. I will start my own blog no later than June 1st. I have tons more to say!

Altered today: Fear of blogging, feeling of empowerment over pain

Day 166: With Love To My Fellow Sick Friends

"You'll be ok." It's important to remember...especially when dealing with chronic illness. 

I KNOW. Easy for me to say. I can walk. I have my house. I have health insurance. My kids aren't sick. I have a doctor.  I'm not___________ (place your concern here).

Maybe so, but I do know this.

-You are powerful.
-You are resilient.
-You are amazing.

And there is NOTHING and I mean no-thing in this world too big for you to handle. 

Don't believe me?
Look around.  Look at all of the stuff you've accomplished...especially the stuff you never thought possible.

Think back to that deck you built, those shelves you assembled, that paper you wrote, that baby you pushed out, that love you lost, that trip you planned, that training you passed.  At first, wasn't it all daunting and insurmountable?

You've achieved so much; stuff most people could only imagine.  This is no different.

True. I don't walk your path. So I won't insult you by comparing mine. Still, I know your heart. I know who you are.  This is not the end of your journey. This is just the beginning of a new one.

Altered Today: Attitude about illness, support for others.