Thursday, September 6, 2012
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.
Saturday, September 1, 2012
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.
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
5. Most challenging symptom(s)? Pain, of course!
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.
Thursday, August 30, 2012
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.
Monday, August 27, 2012
Friday, August 24, 2012
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.
Wednesday, August 22, 2012
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.
Wednesday, August 15, 2012
Step four: collect a specific list of site addresses for each of the buttons you are adding.
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:
width="32" height="32" alt="YourButtonsName" />
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.
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.
Friday, August 3, 2012
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.
Wednesday, August 1, 2012
Guided visualization - https://members.kaiserpermanente.org/redirects/listen/
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
Friday, July 20, 2012
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.
Tuesday, July 3, 2012
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.