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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Letter to Normals

Normally I would just post a link to an interesting article I found, or quote it. But I found this to be right on target. I am going to post the entire article and a link below. This site has a lot of great information and coping advice. It is the Fibromyalgia Network. I belive this relates to those with any invisible illness/disorder/disease.
Letter to Normals: Getting Others to See Your Symptoms

"These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day flat on my back in bed and I might not seam like great company, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker than ever. Please don't say, "Oh you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welome.

Please understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can't move. With this one it gets more confusing.

Please repeat the above paragraph subsituting, "sitting up", "walking", "thinking", "being sociable", and so on... it applies to everything. That's what a fatigue based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that  one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and an often make me seriously worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were stuck in bed for years on end?!) but it is not caused by depression. Telling me that I need some fresh air and exercise is not appreciated and not correct. - if I could do it, I would.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chonic illness.

If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at on point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with fibro then we'd know about it. This is not a drug company conspiracy, there is worldwide networking (both on and off the internet) between people with Fibro, if something worked we would know.

I depend on you - peple who are not sick - for many things.

But most importantly, I need you to understand me."

(I cut out a few paragraphs as they are more specific to Fibro)

Letter to Normals

As I said last post...It's hard to understand the unknown. It's hard to understand what you've never personally experienced.

I will be walking for the Chiari & Syringomyelia Foundation's Unite@Nite Walk June 16th in my neighborhood. If you are walking Solo (as I am) or interested in joining a team, I have set up Team Chiari-Life feel free to join and help us reach our goal!!
To Donate, Register, or Sponsor please click here:
Team Chiari-Life

Check out DesignsByDayzi for Chiari Awareness items, proceeds go towards the walk!

-Alicia

When it rains, it pours

Chiari Blog Carnival #3: When it rains, it pours.
Topic: Dealing with difficult people in addition to dealing with a difficult illness.

"But you don't look sick?"
(Photo provided by Eliza Jayne Photography)

The first thing that comes to my mind is "But you don't look sick!?" Yeah, we get that alot. Chiari Malformation is considered an invisible illness because you don't usually see the symptoms on the outside.
Of course I look normal.
You can't see the pressure in my head.
You can't see that it feels like my head could explode at any minute.
You can't see that my hands and feet are numb and tingling.
I may stumble or walk into something, but I just look clumsy to you...You don't see my balance and depth perception problems.
You don't hear the ringing in my ears.
You hear my speech slurr or I trip over my words. You laugh, I laugh. But do you know why it happens? Does that come to mind when you hear it?
You don't see me almost black out from getting dizzy and lightheaded if I drive too fast over a hill.
(I know why I can't ride rollercoasters.)
I could continue to go on and on with the list.
I have tried looking at things from the opposite point of view. The other person can never fully understand what you are going through. They may try to relate by sympathizing with you over something they have gone through. "I've had surgery once. I went in to get my tonsils taken out"
Oh ok...not quite on the same plane as brain surgery. "So you're cured now that you've had surgery right?" No surgery is not a cure, just a form of treatment. "Oh."
People do not understand why surgery if its not a cure. What is the point of surgery?

When I first had major problems I went back to my family doctor a few times for "migraines". Each time I was given a different medicine or something to try. Finally he ordered an MRI after I went in and couldn't turn my head at all. I was lucky enough to be referred to a NS who knew of Chiari and wasn't afraid to work with it. He has followed up ever since. I was diagnosed in 2003.
A lot of people go through several doctors, neurosurgeons, neurologists, and other specialists before they are diagnosed.
After dignosis its a mixed feeling. You're relieved because you finally have an answer for what you're going through. But on the other hand....what do you do with it?
You barely understand it, how will anyone else? So you begin to tell your family and then your closest friends. Again...they don't really experience what you're going through. They know what you're saying. They don't feel the pain. It's hard to sympathize with the unknown.

This topic fits well with what happened two weekends ago. We had the bachelorette party for my best friend, Abby, on April 20th. We all took her out to dinner. Then we were off to the bar across the street from her house. We had a limo scheduled to pick us up about an hour into that as surprise. The limo would drive us around town to various bars for the night. Now let me first say I was the only female in the bridal party aside from the bride. Abby and I have a lot more male friends. She had me (her maid of honor) and 3 boys her bridesmen/maids. The bachelorette party was mostly men. haha.
Anways. We went throughout the night all was well. I was mostly pain-free all day. As it got closer to the end of the night...my head started. (I do not drink and did not.) It was about 12:30AM and we had about 2 hours to go. I couldn't crap out and leave. We went for 4th meal at taco bell. I didn't get anyting as I felt nauseous. I thought I was going to puke from the smell when the food got into the limo. But I was ok. Everyone was offering medicine or alcohol (lol thanks but that won't help?) and what they could do? My head continued to get worse and the pressure in the back of my head grew. We parked across from Abby's house and thanked the driver. We walked over and I knew I was about to vomit. I whipped my hair up in my hand out of my face. I projectile vomitied on the sidewalk. It was like some kind of Exorcist move. It was a good thing no one was in front of me. Abby said something like "you puked like a rock star" Everyone was like "WHOA" because it came out of nowhere. They were all trying to help hold my hair and rub my back and ask if I was ok. At that point I to be left alone for a second in case there was more.

Bridesmaids L to R:
Mike, John, Abby (Bride), Me, Brad

The good thing about it...I made it to the end of the night, Abby had a great time. And my friends actually got to see something that Chiari does to me. They were able to see a bit of the pain I was in. If they couldn't see the pain on my face...they saw it when the vomit shot out of nowhere.

Don't forget to check out the rest of the Carnival!

Words

Chiari in words:

CHIARI

Life

Friend

Help

PAIN

Understanding

Alone

Helpless

Stress

Confusion

Headache

Disorder

SUPPORT

Numb

Damage

Surgery

Decompression

Research

Invisible

Reality

Recovery

Symptoms

Awareness

Fear

Anxiety

Purple

Survive

Dizzy

Burning

Pressure

Balance

Restriction

Tension

Sensitivity

STRENGTH

Straining

Loss

Swollen

Vomiting

Insomnia

Endurance

Community

Syringomyelia

Struggle

Different

Spoonie

Frustration

Conquer

Diagnosis

Scared

Hopeless

Brain

Heal

Tolerance

Learning

Adjustments

Change

Coping

Post-Op Anniversary

No funny stories in this post.
Today is my 8 year post-op anniversary.
8 years ago today I had decompression surgery.
8 years ago today I had brain surgery.
I can't believe it's been that long already.

Surgery was scheduled for July 25^th, 2003 at York Hospital. Dr. Schlegel and Dr. Winer performed the surgery. I was told afterwards that it was good they got in there when they did because the base of my skull was eggshell thin. I was in ICU (Intensive Care Unit) for a little while recovering. The pain after surgery felt much worse than before. It felt like my brain was trying to push out from every opening it could find. There were constant ‘explosions’ of pain going off inside my head. I was constantly puking from the pain. I couldn’t keep any food down. I was ‘eating’ ice-chips. The pain medicine they gave me didn’t seem to help. I hardly slept. My mom stayed with me every night because I didn’t want to be alone. I was finally moved to a regular room but unfortunately, I was put on the pediatric ward. There was always some kid crying or screaming, that didn’t help. All I wanted was to go home. They wouldn’t let me leave until I was able to get food down and keep it down. I also need to get up and walk around daily. My walks around the nurses’ station were blurry. I couldn’t see (because I wear contacts/glasses and didn’t have them because I was in too much pain to bother) and was very dizzy. I was in the hospital for a week. I was finally able to go home when I kept some food down. Dr. Schlegel sent me home with Percocet for pain; which did not help at all. We hardly made it half way home before I started vomiting again. Every bump and turn was murder. The following week I had a follow-up MRI and visit with Dr. Schlegel. I was still having trouble keeping food down. Mom bought something like Pedialyte and I was at least able to drink that for some kind of nutrition. I still couldn’t sleep and the pain was not getting any better. Dr. Schlegel prescribed a different medicine for pain and to help me sleep. After taking that (I do not remember what it was) the pain started to subside and I was finally able to get sleep. I was beginning to keep food down. It took about 4 weeks to recover to my somewhat normal self. Quoted from A Real Horror/My Story

I'm not sure how long surgery lasted. I believe it was about 5+ hours.

I'm going to jump around. I should really talk about diagnosis and how its found (other than generalizing and saying MRI) but as its my Surgerversary (like that term? just made it up.) I figure I should talk a bit about the procedure.

I'm going to try and address the following questions: (Answers are based on my personal experience as well as from other sites.)

How do you know if you should have surgery?

What happens exactly during decompression surgery?
Will this cure/fix my Chiari?
How long does it take to recover?

• How do you know if you should have surgery?Your NS will tell you his/her opinions and resoning for surgery. The more complicated your symptoms are, the more likely they are to recommend surgery. There isn't one specific reason to give the automatic yes on surgery. Depending on the severity of the symptoms and the doctor. If you feel your pain is too much and your not getting the right help/treatment...the best bet is to get a second opinion.
• What happens exactly during decompression surgery?The goal of the surgery is to create more space around the cerebellar tonsils and restore the normal flow of CSF.  The procedure involves removing a piece of the skull in the back of the head near the bottom (craniectomy).  Often part of the top one or two vertebra are also removed (laminectomy).  At this point, depending on the individual case and doctor, some doctors will also open the covering of the brain, the dura, and sew a patch in to make it larger (duraplasty).  There are many variations in how the surgery is performed, including (but not limited to) how much bone to remove, whether to open the dura, what type of material to use for a dural patch, whether to shrink or remove the cerebellar tonsils, and whether to replace the missing piece of skull with anything.  Unfortunately, there is no consensus, and no strong evidence, on which technique(s) is the best.  Because of this, it is important for patients to understand specifically what their surgeon will be doing and why.  The procedure itself lasts several hours and most people will spend a night in the ICU and an additional couple of days in the hospital. (Taken from ConquerChiari)
• Will this cure/fix my Chiari?
  This is not a cure. You should no that surgery is a form of treatment for Chiari and not a cure. It is a way to alleviate pressure from the cerebellar tonsils on the skull. It can help relieve you of pain and symptoms. It is not a guarentee that you will be symptom free. (didn't try to rhyme.)
• How long does it take to recover?As with most anything else...everyone is different. Everyone will have different recovery time. Hosptial time may be a few days to a week. After that it could take a few weeks to a few months to fully recover.

A really good site with some info on all of this is Precision Neurosurgery  along with the Conquer Chiari link above!
Well it is time for me to get off for now!
Comment, Share the blog, Help Spread Awareness!
Thanks for reading:)
-Alicia

Oh before I forget...another link: Conquer Chiari PP Presentation: Treatment as the link says...its a powerpoint presentation on treatment. It is in PDF format. Great read and easy to understand!

A Dose of Reality

Chiari moment of the week:
Last weekend we had a divorce party/pub crawl for my sister. So we were in the car on our way to Fells Point. We had to stop for gas. After I was done pumping/paying etc..I went to pull away and I stuck my hand through the steering wheel to reset the trip counter...the other hand was turning the wheel. Bad idea. I got the one arm stuck in the wheel and had to stop in the middle of Rutter's parking lot. I'm screaming "I'M STUCK I'M STUCK!!" I couldn't get my arm out. It didn't click that I needed to turn the wheel back the other way to get my arm out. Haha apparently my left and right sides were not communicating. Otherwise I wouldn't have turned the wheel while the other was still in it...

Chiari & alcohol...they don't mix well. It's like an instant hangover. It sometimes sucks being 23 years old and can't drink a few drinks without getting headpain right away. If I do drink, I drink slow. I get told to drink up, chug it...etc Yeah..uh NOT happening. I finally know that I'm not the only chiarian who experiences this. I'd like to try and research this more. So there may be more on this subject.