My Rare Disease

Welcome to the first Chiari Carnival celebrating Rare Disease Day. Please take a moment to introduce yourself to the readers of Chiari Carnival. Hi, I’m Renee, but my handle, Shalunya, might be more familiar to you.  I’m 42 and a single Mom to one 22 year old critter. Soon to be wife to an amazing man that I met playing poker on Facebook. I am an avid blogger, an aspiring poet with the vocabulary of a fifth grader, a quilter in training, a photography hobbyist, a loyal Oklahoman and an all around quirk. I am an enigma, just ask anyone that knows me, including my doctors.

Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you? It was August 2005, I was 36. I went for a doctor’s appointment to receive my ‘normal’ MRI results. My doctor was reading my MRI report in front of me, she read the words Arnold Chiari Malformation, type 1, then she had to leave to go look up the meaning. 

Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation?Well, of course! I have an unrelated heart condition, diastolic dysfunction.  I also suffer from classic chronic migraines, degenerative disc disease, peripheral neuropathy, disequilibrium, spinal stenosis and so on and so forth.

Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery? I am a proud zipperhead since November 2005.  I can, fortunately, report that decompression surgery is the only Chiari surgery I have undergone. But I did dye my hair bright pink to celebrate it before it was shaved off by the surgeon.

Western medicine focuses on medicine and medical procedures. However, many people benefit from ‘alternative’ therapies. What is your favorite non-medical/non-medicinal treatment for symptom relief?Yoga to keep my body as flexible as possible since pain tends to cause one to become stiff, meditation/prayer to keep my mind clear and focused on what is important, rhythmic breathing to help increase tolerance to pain, guided visualization for relaxation and journaling to cuss about everything that bothers me without negatively impacting those that love me. 

Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom?Ohhhh there are some good ones. There is visual disturbance, with my particular brand I have no idea what it is like to close my eyes and get a blank slate to sleep under. Then there is clouding of consciousness, i.e. brain fog, which causes me to spit my toothpaste on the floor instead of in the sink or to put my keys in the fridge. Cognitive impairment, memory problems, if my brain does not deem a memory as important it doesn’t file it away properly and therefore I cannot remember it. It’s like it never happened. Last but not least!  One of my favorites, formication, the sensation of having bugs crawling on your skin. 

Dealing with pain and symptoms day after day can be very challenging and many state that their loved ones just don’t understand. What would you like others to know about living with Chiari?

The best piece of advice for those that support chronic illness sufferers is to listen to Christine Miserandino’s Spoon Theory.  She suffers from Lupus and explains the challenges of living with chronic illness clearly and beautifully. I have never read or heard anything else that describes our predicament so precisely.  It’s long but it’s worth it.  You walk away with a great appreciation of the challenges we face just trying to get through an average day.

 

Attitude is plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude? I listen to a lot of great music.  Most days I don’t bother turning on the television to be bombarded by a cacophony of colors, movement and noise. I also, intentionally, find things to laugh about. My boyfriend is great at sharing stupid, funny videos with me on youtube. I remember that if I can do three little things I can get through anything! If I can talk about my problems, laugh at my predicament and pray about my challenges I can deal with anything that comes my way.

A great quote can remind us to keep the faith during those dark moments in life.  Can you share a quote or saying that provides you with inspiration? Hmmmmm, just one? Okay, it would have to be a Wendell Berry quote. “It may be that when we no longer know what to do, we have come to our real work and when we no longer know which way to go, we have begun our real journey.” It’s just a great reminder that what seems to be the end of something is really just the beginning of something new.

On behalf of Chiari Carnival thank you so much for sharing some of your Chiari journey with us.

Let the Countdown Begin!

In 9 days, 7 hours and 6 minutes I will leaving to see Arnold. Granted it takes over 29 hours of travel time to get there, but I will be on my way.  It has been nine long months since I have seen him which is difficult.  We do Skype everyday, of course, but it’s not the same as being able to touch each other.  I miss just holding his hand.  Touch is very important to me since I have a chronic illness and frequent pain. I have learned some great techniques to remove myself from the pain I experience but it is much easier to do when I have an alternate sensation to focus on, such as his hand lightly rubbing me.  So I am so excited to go on vacation with him.  Plus, this time I get to bring my son with me as well.  It will be the first time that all five of us, Arnold, my son, Arnold’s two daughters and myself have been together! So I am going to enjoy every second of it!

I wish today had been spent preparing a few things for my upcoming trip.  Instead I spent the day in bed or the recliner with terrible pain and a burning desire to crawl out of my own skin.  I was irritable, emotional and generally miserable.  Luckily, I didn’t have too much on my ‘to do’ list for the day. The biggest thing I needed to accomplish was to prepare Arnold’s Visa paperwork so that I can give them to him when I see him.  There were several questions that Arnold needed to answer.  So while we were Skyping I would pose the questions to him and note the answer on our form. Now, I know how frustrating government forms can be. I worked for the government for several years.  But Arnold is new to this and I wasn’t feeling so well.  Eventually there were tears involved but they were about my frustrations because I felt awful and couldn’t communicate clearly to him. Thankfully, all the questions have been answered and both Arnold and I are now chasing down supporting documents. 

There was one bright spot in an otherwise difficult day.  When my health becomes challenging my computer is my best weapon in keeping myself calm and entertained. From the comfort of the recliner, I was playing a little Texas Hold’em Poker on Facebook when Casanova came looking to cuddle.  Soon he was curled up on my lap and watching the cards be dealt.  If you didn’t know better it would be easy to assume he is reading the table.  It was a great mindless time-passer. The bad news is that we lost about $100k in pixel chips.  I think its safe to say he’s not my maneki neko.

Technorati Tags: visa,chiari,poker

What makes me smile?

Living with chronic pain doesn’t always mean a chronic crappy life.  Don’t get me wrong, it certainly can mean just that but I refuse to let my disease dictate my lifestyle.  My disease can frequently limit my ability to participate but I will not let it limit my happiness.  I have adjusted my definitions of happy, normal, healthy, and whole.  No matter where you are in life everyone can benefit from the occasional redefining of these things. So today, I am going to look at the things that genuinely make me smile.

Since Arnold is halfway around the world and we see each other daily but only on skype, we have to get creative when it comes to ‘dating.’  One of our favorite activities is watching silly, stupid, funny youtube videos.  This one is our favorite and I have copies on my phone, my nook and my psp. 

Seriously, how can you not smile when you hear that laughter!

Charlie is another fave!

From Jay Leno, the free photobooth!

Falling down drunk man

And this list would not be complete with out the spoon trick.

Technorati Tags: skype,videos,laughter

Yes, I realize that they are not politically correct.  But what can I say, they make me laugh!  Laughter is an excellent form of medication.  So instead of popping a pill, I think I will get back to watching more stupid youtube videos. 

Please, please, please leave me links to your favorite funny videos.  Arnold and I need some new videos to laugh at. 

Living a healthy life

Since my health is finally stable I have gone back to work part-time.  Most healthy people see the fact that I work as an indicator that I am cured.  Combine my part-time job with the fact that I have no visible physical symptoms and people have a hard time seeing the fact that I suffer from a debilitating and painful chronic illness. I appear perfectly healthy but appearances can be very deceiving.

This week has brought healthy living to the forefront of my mind.  I work in a fitness facility so for fifteen hours a week, I sit at the reception desk and watch people workout. The televisions which hang on the walls display the show The Revolution.  This week its been about numbers, about how numbers can also be deceiving. I have also been battling depression. Unfortunately, my boyfriend has been on the receiving end of that. :( Generally, I have been unfocused and scatterbrained.  My sleep pattern has been sporatic at best.  Menial tasks (like eating) have slipped my mind. So today, I have been thinking about what is it that would make me feel healthy.


For me, there is an entire host of things that have align before I can feel 'healthy.'  Feeling healthy, something that average people do on a daily basis. Yet, it's the one thing a person with chronic illness longs for.  I have redefined healthy, redefined normal, redefined happy.  Below you will find my list of activities that make me feel healthy. Please keep in mind that this is what works for me. Bits and pieces might work for others but this list is not one size fits all.

1. Eating healthy. Overall, I feel my diet is pretty healthy. I always have healthy snacks of fruits or veggies readily available.  But I have to pay attention to my protein intake. I have noticed that if I am slacking on protein I will inevitably get a migraine.

2. Avoiding caffeine. Caffeine plays a huge part in my insomnia. I will never completely give up caffeine but I limit myself to only black and green tea as a source of caffeine.

3. Exercise. I walk on the treadmills three times for a total of about ten miles per week.  Due to my illnesses, I will never be able to participate in any high impact activities.  I also participate in a yoga class once or twice a week. It's a great way to connect with my body to take inventory of how everything is working.

4. Prayer/Meditation. I don't exclusively pray and I don't exclusively meditate.  What I do is a combination of the two.  I sit or lay comfortably, I commune with God, I think through my prayers, and I become quiet usually for about an hour at a time, two or three times a week. My body is so busy with problems, symptoms, and challenges that it's nice to have some quiet in order to work toward clarity.  It's not some bizarre mystical process it's about learning to center oneself.

5. Journaling. I write, I write and I write. I blog, I write in a journal, I write poetry, and I write letters. Sometimes, I alleviate myself of frustrations by cussing in my journal. Often times, I express my gratitude in letters to my boyfriend. I blog just to publicly announce my opinion of things. I write poetry because it just gets stuck in my head and needs to get out.  Even though I video skype with my boyfriend for hours at a time, if I am overly frustrated I will type instant messages to him rather than telling him. For me there is a clarity that comes from seeing words in print.

6. Laughter.  I find that putting a humorous spin on things can reduce the enormity of the situation.  I have a tendancy to make things bigger than they need to be. If I can change my perspective and see the humor in the situation it instantly becomes a lighter burden to bear.  And it's impossible to remain depressed when finding something particularly funny. I am blessed to have fallen in love with a man that enjoys a good laugh.  He can read me better than anyone and he knows exactly when a good laugh is in order.

7. Sleeping. For most people sleeping 6-8 hours a night is just what they need to get through the average day. I, unfortunately, have some pretty serious sleep issues. I struggle with both falling asleep and staying asleep.  There are some nights when my body does not think that sleep should be on the agenda.  Consequently, I have learned to sleep when my body is tired whether its three in the afternoon or three in the morning.  A few years ago in therapy, I learned that lack of REM sleep leaves a person vulnerable to having psychological issues.  For me, a struggle with sleep always equates to a struggle with my emotions.  I never deny myself a nap. If I feel tired I take that as a sign that my body needs more ZZZZZs.

8. Physical touch. Sex would be on this list but its not currently on my agenda since my boyfriend is located on the other side of the globe.  But having that physical connection in conjunction with an emotional one is very important for me. I am a person that thrives on touch.  Physical touch is a reminder that I am not alone, that I have support. It also is the greatest weapon I have against pain. Giving myself a different sensation to focus on is the greatest detractor I have to divert my mind away from the pain.

These are just the basics of what I need in order to consider myself healthy. There are plenty of other things I do to make life a little easier to live. I try not to spend too much time focusing on the fact that I am sick or the fact that I will always be sick.  My life is different, my definition of successful living is different. I just have to make my brand of different be good.

Chiari Blog Carnival

So I have been spending some time puttering around the internet and inviting fellow Chiarians, who also write blogs, to join in a Chiari Blog Carnival. So if you have arrived at my blog you may have received a comment on your blog or an email from me as an invitation to this carnival.  My goal for organizing this blog carnival monthly is to unite my fellow bloggers that also suffer from Arnold Chiari Malformation, type 1. Plus it’s a great way to increase our readership, inspire each other and encourage continued blogging from all of us.

So, you are asking yourself, “What is a blog carnival? How do I participate?'”  A blog carnival is a circle of bloggers that write on a specific topic once a month.  Blog authors participate by writing a blog post about the specific topic and publish their post on the same day.  Then an article is written about all the blog posts and that article is published anywhere online that will allow us an opportunity to post.  My goal as blog carnival ringmaster will be to select the topic (I am ALWAYS open to suggestions), coordinate the publish date, write the main article to include links to all the participating blog posts, and keep the momentum going each month.  My first goal is to see if it is possible to have our article posted on websites that could provide us with some level of visibility to other fellow Chiarians.  A blog has now been established at Chiari Carnival. Our first ever carnival will be held on Rare Disease Day, February 29, 2012.

Each one of us knows how frustrating it can be to live with Chiari.  We also know that it can feel very lonely when you have a rare, chronic condition.  We all have those moments when we feel like no one understands and that we are all alone when fighting this condition. This is our opportunity to unite and to stand together with a clear voice saying “We are here and we have Chiari.”

If you would like an opportunity to see just how a blog carnival works check out these great examples. Jenni over at ChronicBabe.com produces a great monthly carnival.  This months topic You are loved! ChronicBabes! is devoted to the special people that support women with that suffer from chronic illness.  The Writing Reader hosts their Carnival of Creativity promoting creative writing and writer.  The Math Hombre produces Math Teachers at Play blog carnival which is a great resource for teachers of math, of course. :)

I would love to have great participation for the first Chiari Blog Carnival. It doesn’t matter if you are a seasoned blogger or brand new, you have a valuable voice and we would love to include your post.  If you are interested please email me at shalunya@live.com or comment below. An email will be sent to you regarding the specifications for participating in the carnival.  Carnival posts must be published to your own blog by noon EST on February 28, 2012. 

Sidelined by Sciatica on Sunday

Today finds me in bed, having personal stretching sessions and alternating between ice packs and heating pads.  I am not sure of the culprit that instigated this latest round of sciatic nerve pain but I am sure that it's not an easy or quick fix.  If you are not familiar with the sciatic nerve or the pain it can cause let me take a moment to introduce you. More than like at some point in your life your sciatic nerve will let you know exactly where it's located.  Your sciatic nerve comes from the bottom of your spinal canal through your pelvic bone, under your piraformus muscle and down each leg.  If it becomes inflamed it can cause very undesirable pain all the way from the top of your buttocks down to your big toe. Thank Sciatic Nerve for reminding me of your existence.

 
Since I am sidelined today and attached to either an ice pack or heating pad, I find myself wandering all over this amazing web we call the internet.  I have rediscovered a great Chiari support group, played Zynga poker on Facebook, chatted on skype, answered email and been having a 'Cake Boss' marathon on Netflix. Thankfully, I am great friends with pain so this is not a new position to be in.  Luckily, I am struggling with boredom and not fighting with emotions.  Since I have also taken muscle relaxers and pain killers, my brain is not fully functional.  It wants to be entertained and can't be bothered with trying to be productive.  The good news is that I am struggling with this now instead of 2 weeks from now when I am scheduled to be traveling to the Philippines.

I have never had a neurologist confirm that sciatica is a symptom of Chiari but I know I am not the only Chiarian that suffers from this dreaded nerve problem.  You can't convince me that if the flow of cerebrospinal fluid is disrupted or decreased that it will not cause other difficulties with the spinal cord or nervous system.  But I am not a doctor, I am just a simple girl with a complicated

condition.  Chiarians are notorious for having multiple problems.  I don't know of a single Chiarian that has just Chiari.  I don't know of any of us that don't have symptoms that seemingly defy explanation.  When one is given a diagnoses of Arnold Chiari Malformation, type 1, they should also issue a strong sense of patience as well. This condition is elusive at best.  It's complicated and difficult to manage.  A Chiarian must become an open book when it comes to health issues. We must have possess a strong sense of humor and a quick wit to deal with all the complications that are sure to follow our diagnosis. For all my fellow Chiarians, I admire you!  As soon as I can get out of this bed, I will start dancing! :)

Valentine’s Day

Valentine's Day is said to be for lovers. However, Arnold and I are of the opinion that if we can't show our love and devotion for each other the other 364 days out of the year, then doing something 'symbolic' on this day won't change anything.  Since we are so very far apart from each other we didn't send packages to each other because neither of us has a desire to pay for postage. I really don't care for cut flowers. Watching them wither, since they have been intentionally cut from the stem where Mother Nature intends them to flourish, does not sound like a pleasant activity to me. So I wouldn't want him to waste his money just to make me sad. We did tell each other Happy Valentine's Day, but other than that it was just one more day of separation to check off on the calendar.

Lately, I really have been struggling with panic attacks that strike just as I am falling asleep.   As soon as my body and mind begin to drift off I am struck with this overwhelming need to jump up and run. Run to where? Anywhere, nowhere, out of my own body. Truthfully, that's not really a possibility. So I just do what I can to calm myself. Last night I was not surprised by the panic attack that hit; because during the day I was struggling with my heart rate being way to high at 108.  Typically, there is this domino effect that happens with my health.  I have spent years trying to ignore my symptoms, to just get on with my life in spite of the fact that I suffer with symptoms. So usually by the time I pay attention to the fact that I am having symptoms it’s too late and the first domino has fallen. At some point later I end up struggling with a migraine, a panic attack, extreme fatigue or other symptoms which could leave in bed for a day or so. Yesterday was no exception, I was just too silly to see the warning signs. Luckily I can skype with Arnold anytime he is home.  I am so blessed that he understands. Sometimes when I am having a panic attack just seeing his face and talking with him will help settle me down.  He, usually, wakes up almost instinctively when I need him.

Last night, while explaining my panic attack to him I decided to check the status of his Visa  petition online.  In the flash of a second my tears shift from panic and confusion to sheer delight. I notice that his status has changed. We are no longer under “initial review.” We have now moved to “post decision activity.” The following words are the best Valentine’s gift I could have ever hoped for, “On February 14, 2012, we mailed you a notice that we have approved this I129F PETITION FOR FIANCE. Please follow any instructions on the notice.”   Yes!!!! Finally!! Five months and one day after the government received our petition they have approved that there is enough documentation to support our love story.  Next step, the file will be sent to the National Visa Center for Arnold’s background check.  That is a very short process only taking a few days.  Then the package will be sent to the consulate in Qatar to schedule Arnold’s interview. Once the interview has taken place and everything has been approved Arnold given his visa to join me here in America!!! 

Thoughts that visit in the middle of the night.

I won't always share my most intimate thoughts about our relationship so openly as I respect relationship and privacy. However, today on his birthday, I wanted to share this message I sent to him the other night about how amazing he is. So without further ado:

Love, It came crashing down on me this evening as I listen to every breath you take while sleeping. All the reasons I need you in my life became crystal clear. It is all so very simple. You make it simple.

You are the warmth in my sunshine,
You are the stars in my night sky,
You are the rhythm in my heart,
You are the release in my sigh.

You are the smile in my morning,
You are the comfort in my fear,
You are the air in my breath,
You are the melody in my ear.

You are the joy in my world,
You are the strength in my sorrow,
You are the hand in my hand,
You are the hope in my tomorrow.

You are the beauty in my meadow,
You are the serenity in my strife,
You are the home in my journey,
You are the simplicity in my life.

You are the innocence in my prayer,
You are the delight in my scheme,
You are the reason in my being,
You are the faith in my dream.

It's easy because of you, bebi. It's good because of you. You're gentle and kind. You're unassuming and easy. You make it uncomplicated. You make it right. You remind me of what I need to hear, of what I need to see, and of what I need to be without ever saying a word. You know how to make me a better person without changing who I am. You lead me by your presence more than your words. You remind me of all the reasons I battle with my health to life fully and freely. You do so much more for me by just being you. You keep things light and calm when so many things in my being are difficult and confused. Never stop being you. Never let my challenges bring you down. You do a great job at being with me, at being there for me, at being what I need. Thank you for letting me happen to you. 

I can only hope that the rest of his world sees him in the manner in which I see him. Arnold is simply the most amazing man I have had the pleasure of knowing. He is the best friend I could ever hope to have and I get the joy of spending the rest of my life with him. I look forward to sharing my world with him and learning more about his world. He is exactly what I need to help me cope with a lifetime of illness and pain. He reminds of every reason to smile when I only feel like crying. I am so blessed that God brought him into my life.