20 Things

Today is the last day of September...which means it is the last day of Chiari Awareness Month. This does not mean that we stop with awareness. This just gives us more reason to keep it going!:)

 

My Chiari Awareness Necklace

 

20 Things about my Chiari

1. Diagnosed when? March/April 2003, I was 15 years old

2. Decompressed, if so when? Yes, July 15th, 2003.

3. Other additional conditions, if so which ones? Syringomyelia, Depression.

4. Have you personally met someone else with Chiari? Yes, Some awesome Chiarians and their families from the ChiariPeople of Pa support group

5. Most challenging symptom(s)? Head and neck pain...that would be the worst...but you said Challenging...so I would say the depth perception/balance issues along with the speech/slurred words/tripping over words. They are the most challenging as it interferes with walking and talking. Walking...I trip...fall...miss steps...walk into walls...pillars..etc you get the point. Talking....I may repeat the same word over and over again and not be able to stop myself to get the next word out. Or it will come out in a jumbled mess. That makes work challenging. I usually laugh it off...its the easiest thing to do although it is frustrating.

6. Most embarrassing Chiari moment? Oh wow...so many. The time I went to take my pants off..changing into pjs or something and I literally fell out of my pants. Note to self: Sit down when taking pants off. Walking straight into the pillar at work. Walking into the wall at work. Lets just say there are a lot.

7. Biggest Chiari frustratsions(s)? The pain. Having to explain yourself to others because they do not understand. The assumption because I look ok that I'm feeling ok/not in pain...so carry on as usual. Chiari itself. Not being able to do "normal" things.

8. Number of medications in your personal medicine cabinet? Are we talking perscriptions or overall? I've got Topamax, maxalt and the rest are OTC which don't help much.

9. Number of Doctors/Therapists stored in your phone? Chiari related....3 if you count my regular doc

10. Do you attend Dr appointments solo or with support? Used to be with someone in the beginning. Now its usually solo.

11. Biggest regret that Chiari has created? I feel like I lost my teenage/20's years of hanging out with friends and partying. That sort of thing. I don't know when I'm going to feel like absolute shit...so I don't plan much ahead. I try not to drink alcohol so I don't get head pain from that.

12. Biggest lesson that Chiari has taught? It has taught me to be strong. It has taught me that there are more important things in life. It has taught me to grow up and not take everything for granted. Although, there are days I lose sight of that, the pain just knocks a reminder back in.

13. Favorite non-medicinal therapy? Ice packs. Seriously I'd walk around with them as a Icepack helmet if it would stay cold 24/7....

14. Worst medicinal side effect? When I first started taking topamax (which is to help me with my  headaches and migraines (not the chiari headpain)) the initial sideeffects heightened my already numbness and tingling. It was terrible. I thought something was seriously wrong. I saw my NS and he had me see the Neurologist and we did tests etc and then cut the Topamax dosage in half...half in the am/half pm...after about a week it went back to my normal numb/tingling....

15. Biggest change in your life since diagnosis? I'm overly aware of everything I do and how it affects my head. Whether it be an activity, excercise, or even going to a concert (I've posted that before about my friends covering my head when assholes throw beer bottles at concerts)

16. Worst medical test? Only had MRI's, CTscan, and the Neurological exam...they weren't that bad...the MRI's could be less noisy though...

17. Hardest thing to give up because of Chiari? Rollercoasters! I had finally just started to get on them...I was addicted. Nevermore.

18. Have you become more or less religious since diagnosis? I don't think it has changed much.

19. Where do you find enjoyment now, that you didn't before? I have met a lot of new people from all over the world with this disorder through facebook, twitter, and other networks. I am also artsy so I spend time working on different things.

20. Favorite Chiari websites?

They are all actually listed on the right hand side of this page:)

Extra! Extra!

Great news!

Sometime last week I was on Twitter and on the spur of the moment, I thought what the hell, I'll tweet The Evening Sun, my local newspaper. Here's how it went down...

 

I tweeted TES and said "September is Chiari Malformation Awareness Month! Interested in doing a story?" They replied that they forwarded the message to their reporter, Tim Stonesifer, and that we should connect on a possible story. I said thanks I will contact him. He actually conacted me first, through Twitter. He replied to the tweet "Can we talk sometime this week? What's your interest in this condition?" and gave me his contact information. I then sent him an email with some information. We set up a time to have an interview and on Tuesday, Sept 11th. He and a photographer showed up at my house for the interview. The interview went on for about 45 mins to an hour. I was so worried that I would forget to mention everything that needed to get said. This was my chance to get the word out in this area.

When Tuesday came...I prepared myself by having my laptop out with some websites up on Chiari, along with some folders full of info. (I have several purple folders with Chiari info I've collected over the years, as well as my own info and MRI results) I did my best and told all that I could. I forgot so much and yet said so much. I realize if I were to say everything that could be said, it could probably fill the entire newspaper. He said he'd let me know when the article would be out and thanked me for contacting them.

 

The article appeared online Sept 13th. I was so excited. I was at work when I found out. The next day I hit up my local Rutters, and low and behold...my face was on the front page!!

 

Coco and I - Front Page - The Evening Sun

After all of the rambling above...here is the article! Please read and then share! :)
Living with the Pain

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Finally Answering Truthfully

Chiari Carnival #7 Topic: How are you doing?
Theme: Finally answering truthfully. 

The truth.Well...the truth is at this very moment I am fine. Not just the "fine" standard answer given to anyone in passing. Though it is true that "fine" is given a lot when I am truely not fine at all. It is just easier to say then to explain.

• On any given day I am in pain. I would say 98% of the time my head and neck are in pain. It may not be excrutiating, but it is very annoying. It has become second nature to me. It is a background pain. There is this constant achy feeling at the base of my skull (actually there isn't much skull there at all anymore since decompression surgery) It feels like a constant hangover. Imagine walking around with a hangover 24/7. That may be a good way to describe the "regular" day to day head pain. Loud sounds make me cringe. Some sounds more than others. Lights hurt bad. 
• To continue on my day to day pain and issues....I have muscle weakness/get burning sensations. When I am in the shower my arms begin to hurt from washing my hair.
• Several times a day my arms, legs, hands, feet, and random body parts will get tingly and numb. I have had my lip, eyebrow, thigh, butt, and girly parts go numb at random.
• Balance...it's bad. I can laugh at this though until it hurts. I fall upstairs, downstairs, into stuff, onto stuff, sideways, leftways, etc. I can't walk straight.
• Depth Perception...Walking into walls, doorways, missing stairs, into people, things, etc. I can literally see that I'm walking into a door way and somehow end up walking into the door frame. Completely missing the giant hole to walk through. That is my most common problem. I have to watch the floor when I walk because I miss steps, therefore I fall.
• Dizzy/Lightheaded-vertigo....I can't move too quickly any which way or I'll get either. You know the staircases that go in circles? Yeah not good. And how about hotel (or any other establishment that have elevators also) staircases...that go up and around, up and around, up and around....makes me want to vomit.
• Difficulty swallowing. Yes this does happen. I really need to chew my food better.
• Ringing in the ears/Tinnitus...ANNOYING. every once in awhile my ear will start ringing so bad I can't hear out of it. Or it will just shut out sound. Not pop like when you're sick...just stop hearing.
• Fatigue
• Slurred/Tangled speech. I get this way too often. Especially at work. I trip over my words all the time. Sometimes I just start repeating the same word over and over again and can't stop myself. "...would would would..." before I can actually get myself to stop and get out the next word.

Now that I've run through a list of symptoms...haha
There are plenty more but those are what I experience the most on a daily basis. Sounds rough right? You don't physically see this stuff. You might see me walk into a wall. Ha Ha...ok its funny. But 30 times a day. (I may be exaggerating) and it's not just being clumsy. It sucks. The head pain sucks.
I honestly hate not being able to do normal things. This is my normal. I have adapted to my own normal. I don't drink alcohol much if any due to the head pain already. I don't need more pain on top of it. I'd love to relax and have a good time. When I start to...my head kicks in and says "alright thats enough...you're doing way too much" God forbid I laugh too much, I cough or sneeze too hard, or any form of strain.
Some days the headpain is real bad. So bad to the point of vomitting. My ice pack is my best friend. If I freeze it til I can't feel it...it helps a litte. Those days, its really hard to function, but I still do to the best of my ability. If I have to work I will go to work. I will put on a fake smile and act like I'm ok. I will be cheery as hell while inside my head is screaming and pounding. Those are the days that seem to take forever too of course.

"Smiling doesn't always mean you're happy...sometimes it simply means that you are a strong person."

Above is the truth.
It is 1:45 AM. I am working night audit. I will be at work until 7am. Currently my head is ok. Just ok. My feet are tingly. My neck is stiff.

And as this is apart of how I truthfully feel and every other Chiarian out there...here is the best thing I've ever read:

Written by Carolyn Gibbons

"My name is Chiari and I am an invisible chronic illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause your hea...

d to explode and your vision to dim.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Try to have fun now! I also took Sleep from you and in its place gave you Brain Fog - Confusion and Disorientation.

I can make you dizzy and sick; fill your ears with constant noise and a whole host of other things that no one else believes. Oh yeah, I can make you feel anxious or depressed too.

If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons and I'm here to stay!

I hear you're going to see a doctor who can't get rid of me; I'm rolling on the floor laughing - tell him to keep trying! You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, told you are suffering from anxiety or depression, given pills that make you tingle, stuck with needles, scanned, and when they get really desperate they'll drill holes in your head.

You'll be told to think positive while being poked, prodded, and investigated by medical students, and MOST OF ALL not taken as seriously as you feel when you cry to the doctor how depressing life is everyday.

Your family, friends and co-workers will listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you are just having a bad day" or "Well, remember you can't do the things you used to 20 years ago".

Some will talk behind your back while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a person, and can't remember what you were going to say next!

In closing (I hope to keep this part secret) I guess you already found out…the only place you can get any support and understanding in dealing with me is with other people with Chiari."

 

September is Chiari Awareness Month. I am doing my part by posting everything I can on twitter, facebook, tumblr, pinterest, stumbleupon. Please help and do your part! It only takes a few seconds to share. Don't forget to LIKE Chiari-Life on facebook! Follow on Twitter @BearlyBurnt

Copy and Paste....Share on Twitter:
Trend #Chiari Malformation Awareness on twitter! #Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari#Chiari RT

Head over to the next blog in the Carnival