Chiari Carnival #4: Summer 'Blog'buster
Topic: If My Life Were a Movie
For a month I've been thinking about who would play me in my movie. My first thought was Julia Roberts. I mean she's an amazing actress and the red hair. LOVE it. Then I was thinking about how my movie would play out. If I had Julia...she would play my older self. I don't know that part of my life yet. So I started focusing on who would play my younger self. I tried to think of someone who would fit me, could look like me, whose personality could fit mine. The best I came up with was Emma Watson or Alexis Bledel. They both have book nerd characters. But something about them still didn't fit. So I went to the internet and tried to find my celebrity look-a-like. Yeah I really did that. What were my results?
64% match with Charles Manson. Nice. So I picked a better picture and tried it again. I did get Alexis Bledel as a result along with Kristen Bell. I still don't feel it. Then I thought, well hell this is my movie, about me...who could play myself better than myself...? I was in a commercial as a zombie before. (It's the truth) I was also in a carpet commercial when I was little. I have experience. (HA.)
Thursday, May 24, 2012
Friday, May 18, 2012
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
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
Tuesday, May 1, 2012
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.
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.
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!
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) |
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 |
Don't forget to check out the rest of the Carnival!
Saturday, April 7, 2012
Unite @ Nite
Busy busy busy. I have so many things in mind to do. So many projects I want to start. You should see my notebooks and laptop bag. Filled with notes and ideas and topics etc. I'm sure half of them are repeated ideas. Every time I organize them, I start it all over again. I will get to them. (one day.)
So on top of all of the things already listed...I have registed for the Chiari & Syringomyelia Foundation's Unite @ Nite walk in June. They have a few site locations listed. If there isn't a site located near you, there is an option for a Solo Walk around your neighborhood (or whereever).
There isn't a walk near me so I signed up for the Solo Walk.
I have created a team for anyone interested in joining. You can solo walk anywhere and still join. If you'd like to register, join or sponsor my team click: Team Chiari-Life
If you'd like to help click to donate Alicia's Page
My personal goal is to raise $100.00
My team goal is to raise $500.00
Walk Details:
The latest Conquer Chiari Newsletter is out.
You can find the whole newsletter here: Issue March 2012
Ray's Corner was interesting.
Dr. Ray D'Alonzo wrote on Staying out of the Waste Basket. Apparently there are conditions/disorders and such that physicians call waste basket syndromes. Basically what that means is a patient comes in with a vague list of symptoms that could be caused by a number of things. In that case it is difficult for the physician to determine the correct treatment so the patient ends up on antidepressants or pain killers and “tossed into the waste basket”.
That explains why so many Chiarians are "tossed" to another doctor to deal with symptoms and pain or even diagnosis. You go into your family doctors for headache/head pain problems.. Really it could be caused by anything. First thing that is usually done is medicine for migraines/headaches. Not an automatic MRI or testing.
In the write up, he also talks about how many Chiarians are diagnosed with multiple conditions. Whether it be depression, Chronic Fatigue Syndrome, or something else. The chances are pretty slim to have One and the other as statistics go. I believe he means that you could be diagnosed with Condition A and Condition B where both can cause the same symptoms. You may have been told by the same or different doctors you have both A & B. Where maybe you only have A but you can't really see if you have B as their symptoms are the same. (Did that make any sense?) It may be best to go to a Chiari specialist (which is a good idea one way or another IMO) who has dealt with Chiari patients constantly over a period of time. This person may be able to differentiate between Condition A & B.
It is something to think about. Definitely read his whole article through. The link can be found in the newsletter above!
Before I go....I hope everyone has a safe and Happy Easter!!
Don't forget to LIKE Chiari-Life on Facebook and share the page!!
Follow me on Twitter!
-Alicia
PS. April's Chiari Carnival will be out at the end of the month!
So on top of all of the things already listed...I have registed for the Chiari & Syringomyelia Foundation's Unite @ Nite walk in June. They have a few site locations listed. If there isn't a site located near you, there is an option for a Solo Walk around your neighborhood (or whereever).
There isn't a walk near me so I signed up for the Solo Walk.
I have created a team for anyone interested in joining. You can solo walk anywhere and still join. If you'd like to register, join or sponsor my team click: Team Chiari-Life
If you'd like to help click to donate Alicia's Page
My personal goal is to raise $100.00
My team goal is to raise $500.00
Walk Details:
"unite@night will be a one mile casual evening walk, in various locations around the country, during the month of June in 2012. This walk will bring together people who are suffering with the devastating effects of Chiari malformation, syringomyelia, Ehlers-Danlos, hydrocephalus, intracranial hypertension, dysautonomia, autism, and related disorders.unite@night will support CSF Chapters to provide education and increase awareness while funding research projects that can potentially find answers to help those who are fighting these disorders.To register visit http://csfinfo.org
**Raise $25 and receive an illuminated balloon**
**Raise $50 or more and receive a unite@night t-shirt and an illuminated balloon**
The latest Conquer Chiari Newsletter is out.
You can find the whole newsletter here: Issue March 2012
Ray's Corner was interesting.
Dr. Ray D'Alonzo wrote on Staying out of the Waste Basket. Apparently there are conditions/disorders and such that physicians call waste basket syndromes. Basically what that means is a patient comes in with a vague list of symptoms that could be caused by a number of things. In that case it is difficult for the physician to determine the correct treatment so the patient ends up on antidepressants or pain killers and “tossed into the waste basket”.
That explains why so many Chiarians are "tossed" to another doctor to deal with symptoms and pain or even diagnosis. You go into your family doctors for headache/head pain problems.. Really it could be caused by anything. First thing that is usually done is medicine for migraines/headaches. Not an automatic MRI or testing.
In the write up, he also talks about how many Chiarians are diagnosed with multiple conditions. Whether it be depression, Chronic Fatigue Syndrome, or something else. The chances are pretty slim to have One and the other as statistics go. I believe he means that you could be diagnosed with Condition A and Condition B where both can cause the same symptoms. You may have been told by the same or different doctors you have both A & B. Where maybe you only have A but you can't really see if you have B as their symptoms are the same. (Did that make any sense?) It may be best to go to a Chiari specialist (which is a good idea one way or another IMO) who has dealt with Chiari patients constantly over a period of time. This person may be able to differentiate between Condition A & B.
It is something to think about. Definitely read his whole article through. The link can be found in the newsletter above!
Before I go....I hope everyone has a safe and Happy Easter!!
Don't forget to LIKE Chiari-Life on Facebook and share the page!!
Follow me on Twitter!
-Alicia
PS. April's Chiari Carnival will be out at the end of the month!
Thursday, March 22, 2012
Ides of Mayhem
Chiari Blog Carnival #2 - Ides of Mayhem
Topic: Alternatives to breaking down, falling apart or cracking up.
Hmmm Alternatives to breaking down, falling apart, or cracking up....
I'm having a blank and don't know where to start.
Sometimes you just have to break down, as with any other situation, you can't hold in all your frustration and confusion. You can't hold in your tears. The longer you hold something in, the harder it will be when it all comes out. We are strong. We hold a lot in. Finding other Chiarians to confide in is a great way to release a lot of the frustration you may not be able to get out around others who don't quite understand.
When I have a bad Chiari day...thats when I want to break down, I want to cry and fall apart. I want to scream and yell "WHY ME?!" I want to break stuff, punch things, and go into hysterics for someone to understand what I'm going through. Why can't I have a normal life? Why can't I go out anytime I want? Why do I have to lay around and be miserable?
There are days I have to keep it together when I want to break down. I have to keep it together to go to work. I work in customer service so I have no choice but to put on a happy face. I have to keep moving forward.
On my good Chiari days...well I want to do everything. I want to get out all that couldn't be done on the bad days. But on the other hand I can't over strain myself. That will cause a bad day. I can't over exert myself...again will cause a bad day. Hell...I could sneeze or cough too hard..there goes my day. There is also the lack of energy I have that keeps me from doing a lot. The fatigue I get.
The good days give me inspiration to keep going. It helps me to help others in the same situation. Despite the bad days there will be a good day here and there. The only thing we can do is make the most of it.
For example: Last weekend... St. Patricks Day. All the women in my family on my moms side go down to OCMD for our Girls Weekend same time every year. Friday totally kicked me in the ass. Not only did I not drink any alcohol...(Carded for a DIET COKE....side note there.) and started off fine...had to leave the bar early because Chiari kicked in and said FU you're not having a good time tonight. It was nice out most of the day and a bit rainy at night.
Saturday all day was great..my head was good to me. We all went out to the parade, to the boardwalk, to dinner and then to the Sandbar as usual. By this time my head was still being good to me. Again decided no alcohol...my head was being good I didn't want to chance it. Diet coke and water all night. Successful head day. It was misty and chilly all day. You can't predict it.
Cracking up.. I'm not sure how to take this one...it could mean a lot of different things.
Going crazy? Insane? Oh yeah that happens... The pain, frustration, confusion...all of it will drive you mad. What you need is support. You need other people going through the same thing to vent it all out. I have that. www.chiarisupport.org is a place I found and it is growing!
I also have Joe. He makes me laugh. This is the cracking up in a different sense. He helps me laugh at the weird things I do. Chiari comes with a lot of off the wall symptoms. Walking into walls...yeah my depth perception isn't great at all. Speech is messed up. I slur or repeat words over and over. I don't feel insulted when Joe laughs at it.
There are others that don't understand or won't take the time to understand.
I read. Harry Potter is my addiction. Disney is an obsession. I will get lost in books or animation and forget about the world. Thats my alternative.
But how do you handle living with Chiari, wanting to break down, fall apart and crack up when you can't escape? You do all three. Just make sure you have someone there to pick you back up. Don't fall over the edge. You need to know you are strong! If we couldn't handle it...we wouldn't have been given this life to fight for. There are others out there going through much worse.
You can find more Chiari blogs on this topic at the Chiari Carnival
Don't forget to LIKE Chiari-Life on Facebook! Click the link on the Right or click HERE
Lets get Chiari trending on Twitter! Tweet #Chiari on all your posts!
Topic: Alternatives to breaking down, falling apart or cracking up.
Hmmm Alternatives to breaking down, falling apart, or cracking up....
I'm having a blank and don't know where to start.
Sometimes you just have to break down, as with any other situation, you can't hold in all your frustration and confusion. You can't hold in your tears. The longer you hold something in, the harder it will be when it all comes out. We are strong. We hold a lot in. Finding other Chiarians to confide in is a great way to release a lot of the frustration you may not be able to get out around others who don't quite understand.
When I have a bad Chiari day...thats when I want to break down, I want to cry and fall apart. I want to scream and yell "WHY ME?!" I want to break stuff, punch things, and go into hysterics for someone to understand what I'm going through. Why can't I have a normal life? Why can't I go out anytime I want? Why do I have to lay around and be miserable?
There are days I have to keep it together when I want to break down. I have to keep it together to go to work. I work in customer service so I have no choice but to put on a happy face. I have to keep moving forward.
On my good Chiari days...well I want to do everything. I want to get out all that couldn't be done on the bad days. But on the other hand I can't over strain myself. That will cause a bad day. I can't over exert myself...again will cause a bad day. Hell...I could sneeze or cough too hard..there goes my day. There is also the lack of energy I have that keeps me from doing a lot. The fatigue I get.
The good days give me inspiration to keep going. It helps me to help others in the same situation. Despite the bad days there will be a good day here and there. The only thing we can do is make the most of it.
For example: Last weekend... St. Patricks Day. All the women in my family on my moms side go down to OCMD for our Girls Weekend same time every year. Friday totally kicked me in the ass. Not only did I not drink any alcohol...(Carded for a DIET COKE....side note there.) and started off fine...had to leave the bar early because Chiari kicked in and said FU you're not having a good time tonight. It was nice out most of the day and a bit rainy at night.
Saturday all day was great..my head was good to me. We all went out to the parade, to the boardwalk, to dinner and then to the Sandbar as usual. By this time my head was still being good to me. Again decided no alcohol...my head was being good I didn't want to chance it. Diet coke and water all night. Successful head day. It was misty and chilly all day. You can't predict it.
Cracking up.. I'm not sure how to take this one...it could mean a lot of different things.
Going crazy? Insane? Oh yeah that happens... The pain, frustration, confusion...all of it will drive you mad. What you need is support. You need other people going through the same thing to vent it all out. I have that. www.chiarisupport.org is a place I found and it is growing!
I also have Joe. He makes me laugh. This is the cracking up in a different sense. He helps me laugh at the weird things I do. Chiari comes with a lot of off the wall symptoms. Walking into walls...yeah my depth perception isn't great at all. Speech is messed up. I slur or repeat words over and over. I don't feel insulted when Joe laughs at it.
There are others that don't understand or won't take the time to understand.
I read. Harry Potter is my addiction. Disney is an obsession. I will get lost in books or animation and forget about the world. Thats my alternative.
But how do you handle living with Chiari, wanting to break down, fall apart and crack up when you can't escape? You do all three. Just make sure you have someone there to pick you back up. Don't fall over the edge. You need to know you are strong! If we couldn't handle it...we wouldn't have been given this life to fight for. There are others out there going through much worse.
You can find more Chiari blogs on this topic at the Chiari Carnival
Don't forget to LIKE Chiari-Life on Facebook! Click the link on the Right or click HERE
Lets get Chiari trending on Twitter! Tweet #Chiari on all your posts!
Friday, March 9, 2012
Social Life
Having a social life with Chiari is difficult. It's really hard to make definite plans. You never really know how you're going to feel.
Someone may ask me to hang out Saturday night. Of course I want to...but if I say yes now...my luck, I'll have to cancel. If I say no now, again, my luck...I could have a great Chiari day. I don't know how I'll feel. I get a look or a response that isn't too understanding. I don't know how I'm going to feel 3 weeks, 3 days, let alone 3 hours from now.
So how do I handle a situation like this? How do I handle being invited places without being able to give a real answer?
"You never go out!" "You never feel good" "Your head always hurts" "You don't have to drink! You can just go and still have fun!"
Ok... These responses come different ways. I then feel like I get these behind my back (I'm not saying this does happen...It's just the feeling I get)
"She never comes out" "Don't bother, she's not going to come out" "She'll have an excuse" "She has better things to do"
Examples...I have situations where I used to be asked to hang out all the time and slowly the invites happen very rarely or stop all together.Drinking...it doesn't mix well with me. 9.5/10 times drinking kills my head. No a drink will not "help your head" as I've been told many times by random people.
-Sidenote- I wanted to punch some asshole in the face last year on St. Patricks Day weekend in OCMD...my head was killing me while we were in the Sandbar. I had a cup of ice up against my head, this ass walks up grabs the cup out of my hand and mocks me and dumped it back in my hand. -End side note.-
If I'm having a good Chiari day...well theres a good chance I can go and enjoy myself. But as I said, I don't know how I'll feel hours from then. I could get there, enjoy myself, decide to have a drink and well Chiari says F.U. no...then the noise, the lights, the pounding, and the pressure. It all begins.
It could go the same without having a drink on a good Chiari day. I could do the same, go out and have fun. Chiari says you know what? You're letting loose too much. Time to slow down. The noise, lights, pounding pressure begins. Is it some kind of sign that I'm overdoing it? Am I straining myself having a good time? Am I not allowed to have a good time?
Ok I know I hardly ever go out. I know myself. I know how I could feel. Why put myself in the situation? I do want to enjoy life. I do want to see my friends and family. I don't want to sit on my ass all day in front of the tv. Some times that is the easiest.
Others may think this disorder is used as an excuse. But really, it holds us back from a lot of things. If only I knew when and how I would feel. Hell, no one knows when they're going to feel like crap! But most people can get out of bed in the morning and just get moving. For others, it takes us time, it takes a lot of effort to get going.
On bad Chiari days...well I automatically know my answer for hanging out.
Inviting in advance is where the problem lies. It is hard to plan for the future. (Vacations and parties and things like that are a give & take...I'll get to that then) If I'm asked the day of or the night of to go somewhere...I'm more than likely able to give a definite answer.
Chiari comes along with me wherever I go. I can't just leave it at home for a few hours. (I wish)
Making long term plans...well you sort of have to go with the flow. Making plans for vacation...again you don't know how you'll feel. But do you really want to skip out on a week vacation? At least you can lay on the beach and feel like shit? Other sorts of plans...Weddings, Birthdays, etc...you have to do the best you can to make it through to support your friends and family.
Basically what I'm getting at...when you invite someone out with an invisible illness...take into consideration what they are going through. You may not fully understand what they are dealing with and thats ok. If they can't make it out....don't stop asking. If you feel they aren't coming out because of other reasons, talk to them about it. If its the case stated above...try asking closer to time/date. You both may have better luck. They won't feel left out and you'll get to spend more time with your friend again:) You're support is what they need. It helps a lot.
This brings me to the Spoon Theory if you haven't heard of it or read it yet. Please take a minute to read it. This is a great way to explain how someone with an invisible disorder/illness/disease goes through their daily life. Some people have more "spoons" than others daily. Be greatful if you have an endless amount!
Yesterday I had all four wisdom teeth taken out. 2 were impacted and the other 2 just pulled. My mouth is quite sore. I feel like I have lock-jaw. Joe took good care of me yesterday too. He took me in and brought me home all doped up. Then he ran a bunch of errands for me and brought me dinner. Dinner was a large thing of KFC mashed potatoes. YUM! <3 Joe! Today it's pudding and jello. J-E-L-L-O!
Keep watch for our next Chiari Carnival coming at the end of the month!
Someone may ask me to hang out Saturday night. Of course I want to...but if I say yes now...my luck, I'll have to cancel. If I say no now, again, my luck...I could have a great Chiari day. I don't know how I'll feel. I get a look or a response that isn't too understanding. I don't know how I'm going to feel 3 weeks, 3 days, let alone 3 hours from now.
So how do I handle a situation like this? How do I handle being invited places without being able to give a real answer?
"You never go out!" "You never feel good" "Your head always hurts" "You don't have to drink! You can just go and still have fun!"
Ok... These responses come different ways. I then feel like I get these behind my back (I'm not saying this does happen...It's just the feeling I get)
"She never comes out" "Don't bother, she's not going to come out" "She'll have an excuse" "She has better things to do"
Examples...I have situations where I used to be asked to hang out all the time and slowly the invites happen very rarely or stop all together.
-Sidenote- I wanted to punch some asshole in the face last year on St. Patricks Day weekend in OCMD...my head was killing me while we were in the Sandbar. I had a cup of ice up against my head, this ass walks up grabs the cup out of my hand and mocks me and dumped it back in my hand. -End side note.-
If I'm having a good Chiari day...well theres a good chance I can go and enjoy myself. But as I said, I don't know how I'll feel hours from then. I could get there, enjoy myself, decide to have a drink and well Chiari says F.U. no...then the noise, the lights, the pounding, and the pressure. It all begins.
It could go the same without having a drink on a good Chiari day. I could do the same, go out and have fun. Chiari says you know what? You're letting loose too much. Time to slow down. The noise, lights, pounding pressure begins. Is it some kind of sign that I'm overdoing it? Am I straining myself having a good time? Am I not allowed to have a good time?
Ok I know I hardly ever go out. I know myself. I know how I could feel. Why put myself in the situation? I do want to enjoy life. I do want to see my friends and family. I don't want to sit on my ass all day in front of the tv. Some times that is the easiest.
Others may think this disorder is used as an excuse. But really, it holds us back from a lot of things. If only I knew when and how I would feel. Hell, no one knows when they're going to feel like crap! But most people can get out of bed in the morning and just get moving. For others, it takes us time, it takes a lot of effort to get going.
On bad Chiari days...well I automatically know my answer for hanging out.
Inviting in advance is where the problem lies. It is hard to plan for the future. (Vacations and parties and things like that are a give & take...I'll get to that then) If I'm asked the day of or the night of to go somewhere...I'm more than likely able to give a definite answer.
Chiari comes along with me wherever I go. I can't just leave it at home for a few hours. (I wish)
Making long term plans...well you sort of have to go with the flow. Making plans for vacation...again you don't know how you'll feel. But do you really want to skip out on a week vacation? At least you can lay on the beach and feel like shit? Other sorts of plans...Weddings, Birthdays, etc...you have to do the best you can to make it through to support your friends and family.
Basically what I'm getting at...when you invite someone out with an invisible illness...take into consideration what they are going through. You may not fully understand what they are dealing with and thats ok. If they can't make it out....don't stop asking. If you feel they aren't coming out because of other reasons, talk to them about it. If its the case stated above...try asking closer to time/date. You both may have better luck. They won't feel left out and you'll get to spend more time with your friend again:) You're support is what they need. It helps a lot.
This brings me to the Spoon Theory if you haven't heard of it or read it yet. Please take a minute to read it. This is a great way to explain how someone with an invisible disorder/illness/disease goes through their daily life. Some people have more "spoons" than others daily. Be greatful if you have an endless amount!
Yesterday I had all four wisdom teeth taken out. 2 were impacted and the other 2 just pulled. My mouth is quite sore. I feel like I have lock-jaw. Joe took good care of me yesterday too. He took me in and brought me home all doped up. Then he ran a bunch of errands for me and brought me dinner. Dinner was a large thing of KFC mashed potatoes. YUM! <3 Joe! Today it's pudding and jello. J-E-L-L-O!
 |
| Joe & I at the Washington Capitals game. |
My sister, Karen, over at DesignsByDayzi has made these awesome zipper ribbon pins. They are now available in her Etsy Shop. She is donating the proceeds to ConqerChiari. She also has some brain lockets for sale! Check them out! If you purchase, be sure to mention where you heard about her!
Comments welcome!
Don't forget to "LIKE" on facebook. You can click the link on the Right or here: MyChiariLifeComments welcome!
Keep watch for our next Chiari Carnival coming at the end of the month!
Tuesday, February 28, 2012
Rare Disease Day!
Welcome to the first Chiari Carnival celebrating Rare Disease Day.
Introduction:
Hey, I’m Alicia. I blog to share my experiences in order to help others and spread awareness on Chiari Malformation and Syringomyelia. I also have a facebook page based on my blog sharing information as well. MyChiariLife. I am involved with an online support group for Chiarians: Chiarisupport
I have my Associates Degree in Business Management and I am currently the Asst. Guest Service Manager at a hotel in PA.
Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you?
I was 15 years old when I was diagnosed with Chiari Malformation and Syringomyelia. I was diagnosed in 2003.
Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation?
Syringomyelia and depression.
Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery?
Yes, I had decompression surgery in 2003, about 3 months after diagnosis. I haven’t had any other surgeries.
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?
Ice packs. Freezing the pain. Ice packs are my best friends. One on the base of my head/neck and the other on the forehead.
Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom?
Depth perception is way off. I could be walking through a doorway and somehow end up walking into the door frame instead. Although I know I’m seeing myself walking though the doorway…BANG I’m walking into the frame. ALL the time.
Twisted/slurred speech happens a lot. When I get excited or I’m talking fast it happens most. I trip over my words or repeat them over and over until I can make myself stop and start over again.
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 only thing you can do is “Keep Moving Forward” to quote Walt Disney. You have basically 2 choices…let the disorders overtake you or you can overtake the disorders. If you want to live your life…unfortunately you have to get up and get going on your bad days as well as your good days. It’s a pain…literally but the alternative isn’t much of a life to me.
Attitude is plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude?
Reading. I’m a book nerd. Harry Potter is my love. Disney. Music. Movies. I’m crafty. Paper-crafting, woodburning, and other artsy fartsy stuff. Act goofy. Hang out with my boyfriend. Joe is my support, he takes me seriously when I'm hurting and helps me make the best of it. Time with my family and my friends.
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?
I love Disney so here are some:The very things that hold you down are going to lift you up. –Timothy
If you're interested in joining our carnival let us know! Click the link above.
Introduction:
Hey, I’m Alicia. I blog to share my experiences in order to help others and spread awareness on Chiari Malformation and Syringomyelia. I also have a facebook page based on my blog sharing information as well. MyChiariLife. I am involved with an online support group for Chiarians: Chiarisupport
I have my Associates Degree in Business Management and I am currently the Asst. Guest Service Manager at a hotel in PA.
Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you?
I was 15 years old when I was diagnosed with Chiari Malformation and Syringomyelia. I was diagnosed in 2003.
Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation?
Syringomyelia and depression.
Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery?
Yes, I had decompression surgery in 2003, about 3 months after diagnosis. I haven’t had any other surgeries.
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?
Ice packs. Freezing the pain. Ice packs are my best friends. One on the base of my head/neck and the other on the forehead.
Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom?
Depth perception is way off. I could be walking through a doorway and somehow end up walking into the door frame instead. Although I know I’m seeing myself walking though the doorway…BANG I’m walking into the frame. ALL the time.
Twisted/slurred speech happens a lot. When I get excited or I’m talking fast it happens most. I trip over my words or repeat them over and over until I can make myself stop and start over again.
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 only thing you can do is “Keep Moving Forward” to quote Walt Disney. You have basically 2 choices…let the disorders overtake you or you can overtake the disorders. If you want to live your life…unfortunately you have to get up and get going on your bad days as well as your good days. It’s a pain…literally but the alternative isn’t much of a life to me.
Attitude is plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude?
Reading. I’m a book nerd. Harry Potter is my love. Disney. Music. Movies. I’m crafty. Paper-crafting, woodburning, and other artsy fartsy stuff. Act goofy. Hang out with my boyfriend. Joe is my support, he takes me seriously when I'm hurting and helps me make the best of it. Time with my family and my friends.
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?
I love Disney so here are some:The very things that hold you down are going to lift you up. –Timothy
Mouse (Dumbo)
Be yourself here, and if people aren't taking you seriously, then they need to change, not you. –McQueen
You're braver than you believe, stronger than you seem, and smarter than you think. –Christopher Robin
On behalf of ChiariCarnival thank you so much for sharing some of your Chiari journey with us.
Sure thing:)Be yourself here, and if people aren't taking you seriously, then they need to change, not you. –McQueen
You're braver than you believe, stronger than you seem, and smarter than you think. –Christopher Robin
On behalf of ChiariCarnival thank you so much for sharing some of your Chiari journey with us.
If you're interested in joining our carnival let us know! Click the link above.
Sunday, January 29, 2012
Java Monster
So Chiari-Life has a facebook page. Help spread awareness by sharing the link and sharing your story on the page! You can "Like" the Chiari-Life facebook page by clicking "Like" on the right side column or by going to http://www.facebook.com/MyChiariLife
I will try to keep that page updated with Daily Chiari Facts, Stories, Resources, etc.
As I said above, feel free to share your story on the wall, your advice, your questions, thoughts, or anything you'd like (Chiari related obviously)
Now to Reference my Dixie Doodle post...the asap.org newsletter came in and here it is:
ASAP Winter 2011/2012 Issue Check out page 6. (Read the rest of the issue too, some good stuff!)
I have been finding a lot of chiarians on Twitter lately. If you're on twitter, follow me @BearlyBurnt and mention my blog so I know how you found me. Lets get #Chiari trending!
Post this on Twitter:
"Trend #Chiari Malformation Awareness! #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari RT"
I'm out of things to post so good day to you:)
I will try to keep that page updated with Daily Chiari Facts, Stories, Resources, etc.
As I said above, feel free to share your story on the wall, your advice, your questions, thoughts, or anything you'd like (Chiari related obviously)
Now to Reference my Dixie Doodle post...the asap.org newsletter came in and here it is:
ASAP Winter 2011/2012 Issue Check out page 6. (Read the rest of the issue too, some good stuff!)
I have been finding a lot of chiarians on Twitter lately. If you're on twitter, follow me @BearlyBurnt and mention my blog so I know how you found me. Lets get #Chiari trending!
Post this on Twitter:
"Trend #Chiari Malformation Awareness! #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari #Chiari RT"
I'm out of things to post so good day to you:)
 |
| Rockin' the Purple in my car! |
(Couldn't think of a title so I went with the drink I'm currently drinking. Loca Moca Java Monster.)
Sunday, January 22, 2012
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
Friday, January 13, 2012
It is not just a headache.
Yesterday I had one of my bad Chiari days. I woke up with this pressure pain all over my head. It felt like someone was blowing up a balloon inside my head. The balloon was continually being blown up with nowhere to go and not popping. (Really hard to explain the pain.)
It felt like my blood vessels were going to explode. It was a throbbing pressure that went from the back of my head/neck all the way up through to my eyes. As if someone was taking an icepick to my skull.
I don't get these often anymore. (Thank God!) It lasted all day. A few ice packs and aspirin later...pain level lowered. So I didn't call off work; I knew it was a slow day. I got off work and the pain level went right back up. It was a miserable trying to fall asleep. More aspirin and ice packs. Finally fell asleep. Woke up at 4 AM and it was finally gone (as good as gone anyways).
This came out of nowhere. If only there was a way to predict when these days were going to come up...I'd be able to prepare myself. (Not that it would necessarily help)
I hate that when you say headache it comes with the assumption that it can all be taken care of with some tylenol. A headache? Oh ok that's nothing. It's not just a headache. I want to punch the person who gives me that reply. You don't understand what I'm feeling. You do not understand my pain. You do not take the time to listen to me tell you. Why do you ask me how I am in the first place if you really don't want to know the answer? Frustration.
Anyways...I have always had a hard time describing my head pain. Its a weird pain. What do you do when you are explaining it to someone else?
All chiarians out there... I'd like you to post here with your description of your worst Chiari "Headache"
Don't hold back on your description. What does it feel like when you are having a bad Chiari day?
Oh and Happy Friday the 13th!
In honor of Friday 13th ScaresThatCare is having their $5.00 Donation Day. Click their name to help out sick kids and a chance to win some cool prizes! Learn More Here
My sisters blog on Photography & Modeling :Model Eliza Jayne
It felt like my blood vessels were going to explode. It was a throbbing pressure that went from the back of my head/neck all the way up through to my eyes. As if someone was taking an icepick to my skull.
I don't get these often anymore. (Thank God!) It lasted all day. A few ice packs and aspirin later...pain level lowered. So I didn't call off work; I knew it was a slow day. I got off work and the pain level went right back up. It was a miserable trying to fall asleep. More aspirin and ice packs. Finally fell asleep. Woke up at 4 AM and it was finally gone (as good as gone anyways).
This came out of nowhere. If only there was a way to predict when these days were going to come up...I'd be able to prepare myself. (Not that it would necessarily help)
I hate that when you say headache it comes with the assumption that it can all be taken care of with some tylenol. A headache? Oh ok that's nothing. It's not just a headache. I want to punch the person who gives me that reply. You don't understand what I'm feeling. You do not understand my pain. You do not take the time to listen to me tell you. Why do you ask me how I am in the first place if you really don't want to know the answer? Frustration.
Anyways...I have always had a hard time describing my head pain. Its a weird pain. What do you do when you are explaining it to someone else?
All chiarians out there... I'd like you to post here with your description of your worst Chiari "Headache"
Don't hold back on your description. What does it feel like when you are having a bad Chiari day?
Oh and Happy Friday the 13th!
In honor of Friday 13th ScaresThatCare is having their $5.00 Donation Day. Click their name to help out sick kids and a chance to win some cool prizes! Learn More Here
My sisters blog on Photography & Modeling :Model Eliza Jayne
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