How are you?

"How are you?"  It's a question I ask dozens of times a day when I am at work.  But I don't really expect an honest answer.  I don't really have time to listen to everyone's answer.  People don't really want to explain to me what they are really feeling.  Likewise, when people ask me that same question I realize that they don't want a truthful answer.  They want a quick, polite answer.  Truthfully, I don't want them to know what I deal with.

But today I am going to give you the truth.  These truths may seem ugly, these words may seem harsh, these thoughts may seem negative.  Honestly, they exist and every day I battle these things.  Most days people never know how intense the battle is or even that it exist at all.  But in my world, it does exist and it's difficult.  I just refuse to allow it to overtake what I have worked so hard to build for myself.  Please don't judge me based on this post. This is not who I am or what I truly believe but these are the demons that I face on a daily basis. I'd like to think that I am pretty good at keeping them at bay and that the love I have for myself and others can overcome them.  I believe that my life is so much more than this and so much richer than just my battle with the demons of Arnold Chiari Malformation.

"How am I?"

• I have a headache.  This isn't your average "Not tonight, honey, I have a headache" kind of headache.  It hurts to blink and we don't even want to talk about turning my head.   There might be a mad dash to the toilet to vomit, so don't be offended if I suddenly run off.  The light is launching darts of pain into my brain and noise bounces around my skull like a racquetball.  I'm fine and thanks for asking.

• I am dizzy.  My balance system has been completely trashed and sometimes it feels like I'm falling even when I know I'm completely still.  My adorable new wedges have suddenly become my sworn enemy. It, also, tends to make me nauseous.  So suddenly, our expensive dinner reservations seem absurd and pretentious.  I'm fine and I'm looking forward to dinner.

• I am overly emotional for no apparent reason.  Of course, my new parking neighbor has left six inches between my car and his huge SUV. I will admit that I thought about slashing his tires or at the very least telling him why his custom vanity plate (Single 4 Life) is correct in predicting the fact that no one would ever want to be with such an #!@%&$*.  Luckily for Mr. Single, I don't carry a knife.  I'm fine and I can manage.

• I experience sensory overload.  The fantastic new CD you've waited for weeks to download sounds like a someone has released a cat in heat into my head through my ears.  The laser light show at this sold out concert seems like a twisted torture device slicing my brains to microscopic bits. This 'raw' style cinematography of the latest and greatest movie feels like fingers are poking through my eyes and swirling my brain inside my skull.  I'm fine and its really awesome.    

• I experience panic attacks while the rest of the world sleeps.  Just as my brain is drifting all to lullaby land, a  bolt of terror seizes my body.  It's as if I am terrified that I die at any moment, but I am equally terrified that I will continue to live.  I need to get out of my own body, but I usually just end up in a freezing cold shower or wandering outside in the dark. I'm fine and I can wait for the sun to come up.

I could continue this list for days.  All of us that suffer from Chiari realize that the symptoms are endless and the ways in which they effect are too numerous to mention.  Usually, I try to stay positive and not let all of these thing bombard me.  Sometimes, I feel like I put on a show to convince people how well I am doing.

Today, I am telling the truth.  The thoughts above haunt me.  I refuse to let them win.

Chiari Awareness Month

September has been proclaimed as Chiari Awareness month in a few states now.  Sadly, my state is not a that has not made that proclamation.  However, I am not going to allow that to stop me from doing what I can to spread awareness for my condition.

 

20 Things about my Chiari

 

1. Diagnosed when? August '05 at age 36

2. Decompressed, if so when? November '05

3. Other additional conditions, if so which ones? Dysequalibrium, Degenerative Disk Disease, Diastolic Dysfunction (that's a LOT of Ds), Depression, Gloves and Stockings syndrome and Chronic Migraines

4. Have you personally met someone else with Chiari? Not yet.

5. Most challenging symptom(s)? Pain, of course!

 

6. Most embarrassing Chiari moment? I get clumsy and drop things easily. I once made a beautiful banana split at a friends house and then dropped the entire thing breaking her dish. :(

7. Biggest Chiari frustratsions(s)? Having to explain to a doctor what Chiari is.

8. Number of medications in your personal medicine cabinet? 19 including OTCs

9. Number of Doctors/Therapists stored in your phone? 6

10. Do you attend Dr appointments solo or with support? With my new hubby who is great at supporting me.

11. Biggest regret that Chiari has created? Missing once in a lifetime events due to symptoms.

12. Biggest lesson that Chiari has taught? That every moment that I feel okay is a gift, don't abuse it or let it slip away.

13. Favorite non-medicinal therapy? Yoga. Oh and music.

14. Worst medicinal side effect? Having the taste of all of my favorite foods changed.

15. Biggest change in your life since diagnosis? I had to quit my beloved job as a travel agent.

16. Worst medical test? It's a toss up between an electromyogram and the nerve conduction velocity.

17. Hardest thing to give up because of Chiari? Rollercoasters!!!

18. Have you become more or less religious since diagnosis? I have found more ways to become centered which has increased my belief that God is everywhere and not just in church.

19. Where do you find enjoyment now, that you didn't before? Now, I enjoy more down time, reading, talking with friends/family, etc.

20. Favorite Chiari websites? Chiari Carnival

 

Oh, Chiari, you shouldn't have.

Dear Chiari,

You shouldn't have.  No, really, you shouldn't have.  You have given me such thoughtful gifts. They are, um...., incredible. Really, they are. They have taught me so much. The intricate details of these presents are truly mind numbing. They continually amaze me. They touch me in ways I didn't even know existed. You have opened my eyes to so many wonders.  My life has been transformed by all the things I have learned from you.  I didn't know it was possible to feel this way.  It makes me realize that you must really think I am special and I appreciate the passion with which you pursue my attention.  I mean, it's really commendable and it really does make me feel unique. I thank you so very much for the focus you have been giving me lately.  But you really shouldn't. You have been so dedicated to me, personally, for so long now.  You must be getting weary of being so attentive to little ol' me.  I'm so ordinary.

By the way, some of your closest pals have been coming around.  I assume you sent them to reassure me, as if I doubted your intentions.  Trust me, it's not necessary to bother them. There is no need to remind me of your devotion.  I am well aware of your feelings for me.  Surely, they would prefer to pursue their own interests.  They shouldn't feel obligated to hang around me all the time.  I appreciate the courtesy they have shown to me.  I really do.   They, obviously, really care about you; they know everything about you.  They are great at picking up right where you left off.   I didn't even have a chance to miss you because their habits are so similar to yours.  It's cute.  No, really it is.  Trust me.  I am sure they will be there for your through thick and thin.   It must be great to have such dedicated friends.  Thank them for me and tell them I'll be fine.

You must really think I am special since I am getting so much of your time.  I'm flattered.  Really, I am.  So look, I know this will be difficult to hear.  It's difficult for me to say and I hate that this will hurt you.  If I were interested in being involved, you would be my first choice.  Really, you would. You are really fascinating. Honestly!  You are captivating, mysterious, and eccentric.  You know, they should write novels about someone like you.  You re so interesting! You'd make a fascinating research subject. You're so perplexing and complex.  You could blaze new trails, create new ideals. Whereas, I'm just an average Joe.  Just a simpleton, looking for a normal, quiet life.  What I am looking for is so boring and mundane. I just need time, for myself.  I need to figure out who I am, without you. I shouldn't be involved, right now, especially with someone as rare as you.  We just wouldn't be any good together. I would just hold you back.  I'm nowhere near as fascinating as you are.  You really would be better off without me.  I am sure it just wouldn't work out; we're just too different.  So you see, its me; its not you. 

Wishing you all the best, sincerely.

Happy birthday to my baby boy

Brendon, Being your Mom has been the most amazing experience. Thanks for teaching me so much about life. I hope that you always find something to laugh at, great people to laugh with and inspiration to keep you moving forward. Happy birthday, kiddo. I love you! 

Possibilities on the Horizon

Boyet is still not yet eligible to apply for work here in America.  In spite of that, he is beginning the process by sending out applications and attending job fairs.  Today, he had a very exciting opportunity.  He attended a job fair for a restaurant located on top of the new Devon Energy tower here in Oklahoma City.  The restaurant is looking to hire staff to prepare for their opening in late October. Now Boyet won’t be eligible to work for approximately 90 days while we wait on his paperwork to be adjusted from that of a visitor on a visa to a permanent resident.  But we felt that it was important for him to attempt to make an impression so that they would retain his resume for future possible job openings.  My darling husband worked his magic.  The executive chef was so impressed that he was prepared to set up meetings with the other executives at Devon in order to begin the hiring process.  However, since Boyet is not yet eligible for employment they were not able to proceed.  The executive chef explained to Boyet that he would have been at the top of his list of prospective employees for hire.  So, he gave Boyet his personal cell phone number and asked Boyet to call when his paperwork has been completed.  We are very anxiously awaiting Boyet’s status to be adjusted so that he can proceed with employment at the top of the Devon Energy Tower. The restaurant is currently being eagerly awaited as Oklahoma City’s premiere dining experience boasting breathtaking views of the city.  We feel very blessed for Boyet to have such an exciting opportunity waiting for him. Until then, we will continue to say our prayers. 

 

Learning about the Land Run

After finally leaving work (we were delayed by the snack machine servicewoman) Boyet and I decided to take a stroll around Bricktown.  It’s a specific are within the Oklahoma City area. The temperature has dropped so it was a great evening to take Boyet out to explore his new home.  Within Bricktown there is a monument to the Oklahoma Land Run.  In 1889 there tracts of lands that were not assigned as Indian reservations.  The government allowed these lands to be opened up for settlements at a specified date and time.  Settlers lined up to claim tracts of land upon which they could create a homestead.  These land runs shaped Oklahoma’s history and provided the provided an opportunity for my family to settle in this area. We enjoyed all of the fantastic, larger than life sculptures depicting the scenes; and, surprise,  Boyet received a history lesson while enjoying our evening out. The history and settlement of the state of Oklahoma is probably the most fascinating of all of the 50 states in the union.  It really has shaped this area into a culturally diverse are lead by a adventurous soul and a resilient spirit.  It’s the same desire to strength of character that Boyet needed in order to change everything he knew about life in order to immigrate to America. Like all of those years ago, the desire for something different, something better, drives him forward toward the unknown. I am blessed that he was so willing to embrace this new life without having had the ability to experience it first. Now, I will admit that he no longer needs the horse; but he can still find plenty if he so desires.  This weekend, I think we will going to cook up a good pot of beans and some cornbread, just like they did back then.

Love, thank you for being so willing to jump in with both feet without testing the water first.  Thank you for reminding me that laughter can cure so many things.  Thank you for reminding me that love is a miracle.

Streamlining Your Blogger's Sidebar

If you will kindly look to your right you will notice my new "Follow Shalunya & Boyet" box. It comes complete with the fancy buttons below:

 

These buttons link my readers to other social media sites to which I belong. This single box with eight shiny new buttons has decluttered my sidebar and given my readers new means of interacting with me on other forms of social media.  I had been hoping to win a set of fancy buttons through a blog contest but, truthfully, I never win anything. So I decided I would just make a set of the buttons for myself.  Surely, it couldn't be that hard, right?!?!?!  

Honestly, it isn't! Now I will explain that I am not an html guru.  Therefore, it did take me several hours to get the html coding correct so the buttons worked the way I wanted them too.  If you are interested in making yourself some fancy, shiny buttons, too, then stay with me.  If you don't have a blog and don't need fancy buttons, feel free to play with my buttons.  Then you may continue on and have a very happy day! :)

Now, back to fancy, shiny buttons 101.  

Step one: determine which other social media sites you use and you want to include for your sidebar box. 

Step two: acquire fancy, shiny buttons! I found mine from wplift because they included the Instagram icon. I admit I know my way around Photoshop so I did fancy them up and gave them a nice shiny topcoat.  But that is not at all necessary.  Or a simple search on Google for images for social media icons or social media buttons will provide you with plenty of other options which you might find shiny enough for your blog. Happy button hunting. 

Step three: load the buttons you will be using into a public online photo album such as flickr or Photobucket. Keep this window open in a separate tab as you will need to revisit the site often for the url location of each button.

Step four: collect a specific list of site addresses for each of the buttons you are adding.  

Step five: create your sidebar box by adding a 'gadget' to your layout in Blogger.  Chose the HTML/java script option and give your box a name.

Step five: this is where things get a little tricky but, hang tough, we can get there together! You need to place the HTML coding in the box for each button. If you are an HTML guru you can skip the details here as this is all pretty basic; but please comment below or email me because I have will need to pick your brain in the future. If you aren't an HTML whiz then keep reading.

Your code should look like this:

<a title="Follow YourName on Twitter" 

href="http://twitter.com/YourName" 

target="_blank">

<img src="http://farm8.staticflickr.com/1234/123456789_ae2eb5bb02_t.jpg"
width="32" height="32" alt="YourButtonsName" />
</a>

Let me break that down for you in layman's terms.  

<a title="Follow YourName on Twitter" This provides text when your reader hovers over the button.

href="http://twitter.com/YourName" This will send them to your Twitter account provided you change the red letters to your specific Twitter user name. This is where you will place the specific web address for each of the social media sites you are using. 

target="_blank"> This opens a new window in their browser so it is easy for them to come back to your blog to utilize the other buttons. :) 

<img src="http://farm8.staticflickr.com/1234/123456789_ae2eb5bb02_t.jpg" 
width="32" height="32" alt="YourButtonsName" /> Grab the HTML/BBC code from flickr or photobucket. This will display your fancy button on your blog. *Do Not grab just the link.

 </a> This tells the coding goodbye for you so that it knows you are done with it. 

Now the email me button is just a little bit trickier.  Change the red text below to reflect your personal email. 

<a title="Email Shalunya"
href="mailto:YourName@YourMail.com" 

target="_blank">

<img src="http://farm8.staticflickr.com/1234/123456789_ae2eb5bb02_t.jpg" 

width="32" height="32" alt="email copy" />

</a>

Tips: HTML coding is not overly particular about spacing.  So use this to your advantage. I always enter a few lines in between buttons so that if I need to change something about an individual button it is easier to find. It doesn't change the spacing of the buttons so make it easier for yourself if you should need to go back to edit your buttons.

Save after you each button you enter. By saving and testing each button one at a time it makes it easier to methodically work through any issues you are having without overwhelming yourself.  

Wedded Bliss

Boyet and I decided to forgo all the fuss and expense of an elaborate wedding.  We realize that the most important aspect is the MARRIAGE not the WEDDING. We still have so many steps to complete our journey from our single lives to the life we want to establish with for ourselves and our children.  Twenty years from now will we regret that we didn’t have a big, fussy wedding? It’s doubtful.  Truthfully speaking, in order for us to be completely happy with a ‘wedding’ we would want his family and my family to attend.  But it simply isn’t a reality.  So instead we decided to just go to the courthouse for a simple, quiet wedding. There were a total of three people in attendance.  My sister, Tammy, my niece, Kaitlyn, and my friend, Mary.  My son had just started a new job and was unable to attend.  Sure I would have loved to have had all of my family and friends in attendance but it would have been too complicated and too costly for everyone. 

We have struggled for so long to be together. We have known for quite a while that we want to build a long and happy future together. Our wedding was just a confirmation of what we already knew to be true in our hearts.  We are thankful than we had an opportunity to get married so quickly so that we can focus on our next step in Boyet’s immigration process.  Because even though he is now in America and we are married; we still have a long journey ahead of us.  The next step is to file what is known as an adjustment of status (AOS) which will require another mountain of paperwork.  This will change Boyet from a visitor on a visa to a permanent resident and provide him with a ‘green card’ which is required in order for him to obtain employment.  Once he has obtained his ‘green card’ we will begin the paperwork process for his two beautiful daughters.  So even though we are together now, we still have a lot that we need to accomplish.

I am so loved and so blessed to have such a wonderful man in my life.  I have never been happier and I am so thankful that we have come this far in our journey to build a life together.  Our hearts are completely intertwined and are so full of love.  We would like to extend our gratitude to our families and friends who have stood by our side thus far in our journey.  We love all of you and are thankful for all of the love, support and prayers you have given us.  We are so blessed to have such loving people in our lives. 

Chiari Comforts - Blog Carnival 6

For this month’s topic of Chiari Comforts I would like to take the time to share some of my tried and true methods for staying comfortable and relaxed when dealing with challenging symptoms. In order to find comfort, one first must understand. You must understand the source of the symptom. I always request a copy of my test results so that I can further understand the complications within my own body. You must understand the consequence of the symptom. Pain can easily cause depression which causes our bodies to intensify the sensation of pain. So it can become a vicious cycle. Nausea can lead to nutritional deficits which can further deplete your body. Vertigo and syncope can cause serious falls which can lead to injury. You must understand when it’s time to seek additional help. Not every symptom can or should be treated. Do some research on each symptom individually. Learn when you need to be concerned about a symptom. Likewise, learn to accept when a symptom is merely an annoyance.

 

 

For me, the largest, most complicated symptom that I struggle with is pain. At this given moment, it is pain through my sciatic nerve and pain in my head. I know that the pain from my sciatic nerve is due to a bulging disc at my L4-L5. Most likely, a couple of days of anti-inflammatory medicines and some specific stretches will help. In the mean time, I will do what I can to remain relaxed and avoid stress. The pain in my head is due to the latest round of botox shots. The pain will last for 7-10 days. Mainly, I try to occupy myself and not dwell on the pain; but I will take pain medication as needed. More than anything, I remember that pain will not kill me. Yes, it’s definitely unpleasant. Sometimes, it’s downright brutal but it is just another sensation. I live with pain, daily, and I have lived through some extremely painful episodes. I refuse to allow the pain to become a focus in my life. In order to keep life in focus I pray and meditate. This reminds me of what is important and that my life is so much bigger than pain. During spikes of pain I employ breathing and focusing techniques that I learned during biofeedback. One of the simplest breathing techniques is the long exhale. A quick Google search for 7-11 breathing technique will render plenty of results touting the benefits of a long exhale. However, the 7-11 technique can be daunting and it requires practice. A simpler version of this is 4-7. Breathe in for 4 seconds and out for 7 seconds. If you have a blood pressure cuff at home you can easily see results after a minute of 4-7 breathing. If you are in a quiet, still place you can actually feel your body beginning to relax with each long exhale.

 

 

Night time panic attacks are particularly difficult for me. I know that I suffer from a form of central sleep apnea which differs from obstructive sleep apnea as my oxygen saturation never drops and there is no pause in my breathing. I just cannot reach REM as easily as others do and my body rouses itself from sleep for no apparent reason. There are some nights that just as I am falling asleep I awaken with a start and become panicked for no good reason. These are the times that I struggle to find anything comforting. I will take a cold shower since being startled always increases my body temperature. I must talk to someone, anyone really. It must be someone that is non-judgmental as I am apt to say crazy things that make absolutely no sense. But more than anything I have to do anything I can to get my mind off of my current situation and onto to anything else. These are the times that incredibly stupid TV shows come into play. The more obnoxious the show the better.  The goal is to shift my brain away from the birage of crazy, irrational thoughts.

 

 

So for me the secret to finding comfort is to know where the symptom originates from and to know the consequences of the symptom.  Below is a list of 'comforts' that I turn to on a regular basis. 

 

Breathing techniques -  http://www.livestrong.com/breathing-exercises/
Guided visualization - https://members.kaiserpermanente.org/redirects/listen/
                                        http://www.qualified-lifecoach.com/Free_Life_Coaching_Products.html

Meditation - http://www.learningmeditation.com/index.php
Yoga - http://www.yoga.com/
Epsom salt soaks - http://www.epsomsaltcouncil.org/health/#
Aromatherapy - http://www.aromatherapy.com/
Vibrating heating pad -Sunbeam Massage & Heating Pad

Chillow - Chillow
Theracane - Theracane

 

Boyet’s Arrival

Currently, there is a man curled up next to me on our bed exhausted from too little sleep before travel and jet lag due to 33 hours of travel.  His journey to be by my side was long and arduous; but I am so thankful that he was willing to come. Finally he is here with me and the next stage of our journey begins.  It has been such a long hard trek to get to where we are and we are a long way from being finished with Arnold’s immigration journey.  Thankfully, we can be together for the rest of the journey.

Boyet took me completely by surprise when he gave me an engagement ring.  I feel so blessed to have him here with me.  Honestly, we are just a simple couple, wanting a simple life. Family, faith, health, happiness, prayer, and hard work are the things that matter most to us.  There are so many things about my life that have changed for the better because of my relationship with Boyet. He has shown me that the simplest way of living holds the biggest promise for happiness in the smallest of places.

The ring that he gave me is perfect. I love my ring but I love the man that gave it to me even more because of what is in his heart.  He is a good man who willingly takes on all of my medical issues.  I know it can be daunting when you look at all the things I deal with but he has become my rock who is always there for me when things get difficult. When my symptoms are at their worst he brings everything back to simplest things.  Breathe, eat, drink, relax, pray, etc.

Somehow he always has the magic words to make things seem ok in my life. I am such a lucky girl to have such an amazing man in my life. I thank God for bringing him into my life and now for bringing him safely by my side. Our future is bright and I am happy.

Creative Chiari–Blog Carnival 5

 

First off, I need to apologize for being late with the blog carnival post.  I had a death in the family and my sister was in the hospital.  So it’s been a little crazy for me. But I am back on track!

This month’s theme is how we,  Chiarians, use creativity as a tool to help relieve stress, enjoy life and just make life more beautiful. So please let me take a moment to show you some of the creations I make.

I love scrapbooking and card making.  I began doing both before my diagnosis and I still enjoy it today.

Kindly note, Cricuts do not come with spell check and there is an H in birthday! LOL!

My precious dog, Ginger, that died a few years back.

I love that scrapbooking gives you a great place to store those paper mementos that would otherwise get tossed in the trash.

I made this ‘faith’ plaque for my good friend, Terry.  The I decorated it with beads and charms. 

Every year the ladies in my family do the Race for the Cure since my Mother is a breast cancer survivor. A few years ago I made all of us ladies convertible bag/backpacks to wear the day of the race. My Mom owns an embroidery machine so she was kind enough to do the panels in the middle of the bag.

This has to be one of my favorites! This sweet angel with all the stars falling down at her feet.

This piece has this wonderful (frustrating) flowers which were folded and stitched by hand.

This is a cute summer piece I created.

I created this wall hanging for my friend, Heather, it says love, friendship and other things (I don’t remember).

My Mom and I made ‘bargello’ style American Flags at the same time. I love quilting with my Mom. Since she is a cancer and 2x open heart surgery survivor, she understands illness and limitations.

I also write poetry, most of which can be found here on my blog. But below is the one poem I have written about my Chiari battle.

Pink flawless skin, so soft and tender,
Sweet baby girl, full of hope and wonder.
Tiny little cries with new breath of life,
No one foretold future years of such strife.

Very stubborn, strong-willed, and always full sail.
Living life to its fullest, blazing her own trail.
Educated by experience, a stranger to fear;
Walking on faith blind to demons near.

Savor the highs, she's always vowed;
Enjoying the journey of living out loud.
Sampling the world, an adventure to roam;
With God's gift of grace, her heart found a home.

Blessed in love, her best self she'd found;
Charming those near, laughter her favorite sound.
With drive, dreams, and wit, seeming to have it all.
Now hearing the whispers, her health soon will fall.

Her brain slipping downward, her MRI notes;
She's buried in pain and a sea of white coats.
Giving up her goals, her body now weak;
Rare condition they say, new specialists she'll seek.

More scans and tests, questions abound.
Surgery the only hope, no cure to be found.
Her balance so unsteady, her head in a spin;
Aches and pains all over, her energy now thin.

Her health is unfaithful, her body betrays;
A beauty now broken in so many ways.
Grand dreams now futile, her efforts in vain;
A new evil now lingers bringing more pain.

Unable to think clearly, illness her new friend;
Her body the new battlefield, the medications defend.
Time is her warden in this prison full of ache;
She'll live long in her torture, her life it will not take.

Once her drive was so strong, but now it's dwindled low;
Her star then blazing brightly, is now a dimming glow.
A life so full of joy, and with passion for the quest;
She's unable to move forward, for now it's time to rest.

The playground of her world, once welcoming and warm;
Now stealing with shadows, thriving in her harm.
The warriors of disease will battle all life long;
Breaking her defenses, the beasts seem so strong.

Last but not least I really enjoy photography, so here are a few of my favorites.

 

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