I'm getting ready to finally see a dys specialist. I am so nervous!! There is so much to discuss. So to ease my anxiety and be prepared I thought I would make a list of my symptoms. I thought I would share with you.
Symptoms Head to Toe
Head/Neuro
Near constant migraine headaches
Stabbing pains in head
Black-outs
Near black-outs
Dizziness
Facial, neck and chest flushing
Extreme thirst ( I call it “sick thirst”)
Brain fog
Difficulty finding words
Temperature intolerance-especially heat
Sensitivity to smells, noise, light
Blue lips
Neck pain
Hair loss
Anxiety
Depression
Insomnia!
Feeling easily overwhelmed
Abdomen:
Near constant nausea
Vomiting
Bloating
Indigestion
Diarrhea/Constipation
Cramping
Frequent urination
Kidney stones
Gallstones
Heart/ Lungs:
Tachycardia
Labile blood pressure-normal to high
Hr elevates by 30 or more beats when standing
Palpitations
Painful heartbeats
Chest pain
Shortness of breath
Difficulty drawing a breath/tightness
Feeling oxygen starved
Severe oxygen desaturation when sleeping (not apnea)/ Oxygen prescribed
Back
Neck, upper , lower back pain
Extremities:
Hypermobile Joint Syndrome
Painful joints
Reynauds
Restless legs
Red burning palms and soles of feet
Swelling of hands, feet, ankles
Pitting edema in feet
Pooling of blood in hands and feet
Purple discoloration of feet
Painful burning and tingling of hands and feet
Shaking/tremulousness of limbs
Muscle twitching
Not sure if this is all of them...will review later. Right now someone is sticking a knife in my head and back simultaneously. Migraines are fun!
Tuesday, September 28, 2010
Sunday, September 26, 2010
Why the new name?
I changed the name of my blog. "Why?", you ask? This was the original name but I thought maybe it was too weird. But it kept tugging at me and so I changed it back. Because this is how I have felt since getting sick. So let me explain. I often think that it feels like my body and I are separate entities. I have no control over what it does on moment to moment basis. It controls, how I feel, what I get to do, and (mostly this one), what I don't get to do. It tells me that I'm shaking trembling anxious, even when I'm just chillin on the couch. It tells me I'm gonna vomit RIGHT NOW,even when I was completely fine a second ago. It tells me that I AM NOT going to sleep, even when I am completely exhausted. Its like something took over my body. Which made me think of this:
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Yep. Its like the body snatchers came and invaded me. My body and even parts of my mind are changed. I don't control it really. I even struggle to think clearly and form simple words at times. I miss the pre body snatcher me. I was smart. I had a large vocabulary. I had good grammar. Apparently the pod people are idiots with empty minds. I will continue the fight to keep whats left of me. I will fly half way across the country, spending money that we definitely don't have so that maybe I will have better weapons to fight this invasion (please, let this doc DO something to help). I will get up every morning and fight against it. But it is exhausting. Sometimes I don't want to fight anymore. I just want to give up. Let it consume me. How bad could it be? Maybe it would be peaceful. But I cant. I cant give in. I don't want to be a full pod person. Dang it anyway. So I will keep on fighting I guess. Keep searching for someone who has experience with this type of invasion. They are hard to find. Believe me. Most doctors just don't have experience with body snatcher invasion, otherwise known as Dysautonomia. SIGH. I really do despise those pod people. A lot.
So that's how the name came to be. I think its fitting. You may just think I have gone off the deep end finally. I probably have. I think my fellow dysautonomiacs will relate though. And maybe, it will give the rest of you a way to picture how I feel. Or again, you all may just think I'm a nutter (in the words of my aussie friend).
***Editors note-for those of you who read this and are thinking "oh my gah, Cyndihas totally lost it! She thinks she was abducted by a liens!!! We have to get her committed to the nearest mental hospital!!" I really don't think i actually was invaded by alien body snatchers. It is a metaphor. REALLY. I promise. I am not yet completely insane. But thanks for caring.***
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Yep. Its like the body snatchers came and invaded me. My body and even parts of my mind are changed. I don't control it really. I even struggle to think clearly and form simple words at times. I miss the pre body snatcher me. I was smart. I had a large vocabulary. I had good grammar. Apparently the pod people are idiots with empty minds. I will continue the fight to keep whats left of me. I will fly half way across the country, spending money that we definitely don't have so that maybe I will have better weapons to fight this invasion (please, let this doc DO something to help). I will get up every morning and fight against it. But it is exhausting. Sometimes I don't want to fight anymore. I just want to give up. Let it consume me. How bad could it be? Maybe it would be peaceful. But I cant. I cant give in. I don't want to be a full pod person. Dang it anyway. So I will keep on fighting I guess. Keep searching for someone who has experience with this type of invasion. They are hard to find. Believe me. Most doctors just don't have experience with body snatcher invasion, otherwise known as Dysautonomia. SIGH. I really do despise those pod people. A lot.
So that's how the name came to be. I think its fitting. You may just think I have gone off the deep end finally. I probably have. I think my fellow dysautonomiacs will relate though. And maybe, it will give the rest of you a way to picture how I feel. Or again, you all may just think I'm a nutter (in the words of my aussie friend).
***Editors note-for those of you who read this and are thinking "oh my gah, Cyndihas totally lost it! She thinks she was abducted by a liens!!! We have to get her committed to the nearest mental hospital!!" I really don't think i actually was invaded by alien body snatchers. It is a metaphor. REALLY. I promise. I am not yet completely insane. But thanks for caring.***
Tuesday, September 21, 2010
Silver Lining?
So I want to start this out by saying, "dang this blogging stuff is HARD". No, seriously it is. For me anyway. Not because I don't have anything to write about. I have a million things running thru my head. But I am always like, "well people probably don't want to hear about that", or "I think that's too depressing", which lately would wipe out most of what I want to write about. Or "maybe I will offend someone with that". Then I think, "who cares what others think, this is my blog". Well, I must care or I wouldn't be writing a public blog. HMPH! So yep it's hard. I finally decided to write this one, with just a little trepidation. Okay, a lot. So here it goes.
People talk a lot about finding silver linings in bad things. I hear a lot of people talk about losing friends with this illness. Some say the silver lining is that they have weeded out the people in their lives that weren't true friends in the first place. Sadly, I have encountered this. Moving here to this small town, not knowing a soul was HARD. It was lonely with no friends or family. After a while I became best friends with a neighbor and joined a church. I soon figured out, though, that in small towns, people have literally grown up together. They have decades of history. They can reminisce about when they were in diapers, swapping binkies. That is hard to break into, people. Very hard. Slowly, I started to be included. I had friendships that felt real. I was confided in about deeply personal things. Had adventures and fun times. Served with many of them on a weekly, if not daily abundance of church activities. There were still times though that they would all get together for a BBQ or something, and I was never invited. Then I would have to sit and listen to them all talking about it and how frickin hilarious so and so was, while trying not to be hurt. It was a reminder that I was not completely accepted, and it always left me hurt, and wondering, what the heck? But I would just push it aside, and go on with these friends. Tell myself to buck up and not be a baby about things like this.
Let me tell you something about myself that may help you to understand my feelings about friendships. I have a insane need to be connected with people. I also feel the need to be liked by all. It really is pathological. I will take tons of crap from people. How sad am I? I am not the kind of person that feels satisfied with superficial friendships. I'm kinda a whole hearted kinda girl. I feel deeply. I want deep connections with people. So I open myself up. Sometimes too much. I get hurt. Most of the time, I realize that's part of life, a consequence of being an open book. I move on. Such is life.
Then I got sick. I hid it for years. Until it finally got to a point I could no longer hide it. I could no longer function normally either. My whole world fell apart. I stopped attending church, and church activities. I basically dropped off the social face off the earth. I wasn't a fun person anymore. I was just SICK and that is it. Once I went and asked for prayer with some close friends. I felt prayed AT. I got the real feeling they didn't believe I was physically ill. It hurt and I didn't go back. People that I considered my close friends, seemed to forget I even existed. Not once did they call to ask what was going on with me. They were all told by my sister and others (myself included) that I was really sick. NOT one phone call, not one visit, not one offer of help. Literally it was like i didn't exist. It was so painful. When it became too much to have them in the fringes of my life, I started to cut all ties. I deleted them off my facebook page.They never, ever commented to my posts about being sick, never offered any encouragement or called me after an obviously troubled post. Their silence was just too hurtful. I also had many be hostile. HOSTILE????? What the heck? I mean really? I have been isolated, sick as a dog in my house and you are hostile to me???? Like what could I have done? I am truly still baffled by this.
So I guess I should be able to say, "good riddance". Be happy in the knowledge that it is better that they are out of my life, they weren't true friends. I should feel cleansed, lighter somehow. But I don't. I feel gutted. I feel abandoned. I feel so so lonely. It also leaves me to wonder why? Why am I so easily forgotten? I am left feeling less then. Like there is something wrong with me. I mean how can I share the times I had with those people, only to be forgotten at the drop of a hat. Maybe I am just a crappy forgettable person. Not worth any ones time. Maybe I wasn't a good friend? I don't know.
The sad thing is, knowing what they have done, I would trade back to the way it was. I would love to not have gotten sick, and still had these superficial relationships in my life. It was less lonely. There were fun times. Now there is nothing. Chalk up another loss to my illness. I mean why not strip EVERYTHING in my life away? So a silver lining? No, I think not.
Now having said all this, I will tell you what the true silver lining is. It is the friends that have truly stuck by me. They have been there for me all the way. I love you, you know who you are!!!! They ease the loneliness, the hurt. I wish like heck that I could focus on that and wash away all the hurt from the others. I wish I was capable of that. But I told you I was pathological didn't I?
People talk a lot about finding silver linings in bad things. I hear a lot of people talk about losing friends with this illness. Some say the silver lining is that they have weeded out the people in their lives that weren't true friends in the first place. Sadly, I have encountered this. Moving here to this small town, not knowing a soul was HARD. It was lonely with no friends or family. After a while I became best friends with a neighbor and joined a church. I soon figured out, though, that in small towns, people have literally grown up together. They have decades of history. They can reminisce about when they were in diapers, swapping binkies. That is hard to break into, people. Very hard. Slowly, I started to be included. I had friendships that felt real. I was confided in about deeply personal things. Had adventures and fun times. Served with many of them on a weekly, if not daily abundance of church activities. There were still times though that they would all get together for a BBQ or something, and I was never invited. Then I would have to sit and listen to them all talking about it and how frickin hilarious so and so was, while trying not to be hurt. It was a reminder that I was not completely accepted, and it always left me hurt, and wondering, what the heck? But I would just push it aside, and go on with these friends. Tell myself to buck up and not be a baby about things like this.
Let me tell you something about myself that may help you to understand my feelings about friendships. I have a insane need to be connected with people. I also feel the need to be liked by all. It really is pathological. I will take tons of crap from people. How sad am I? I am not the kind of person that feels satisfied with superficial friendships. I'm kinda a whole hearted kinda girl. I feel deeply. I want deep connections with people. So I open myself up. Sometimes too much. I get hurt. Most of the time, I realize that's part of life, a consequence of being an open book. I move on. Such is life.
Then I got sick. I hid it for years. Until it finally got to a point I could no longer hide it. I could no longer function normally either. My whole world fell apart. I stopped attending church, and church activities. I basically dropped off the social face off the earth. I wasn't a fun person anymore. I was just SICK and that is it. Once I went and asked for prayer with some close friends. I felt prayed AT. I got the real feeling they didn't believe I was physically ill. It hurt and I didn't go back. People that I considered my close friends, seemed to forget I even existed. Not once did they call to ask what was going on with me. They were all told by my sister and others (myself included) that I was really sick. NOT one phone call, not one visit, not one offer of help. Literally it was like i didn't exist. It was so painful. When it became too much to have them in the fringes of my life, I started to cut all ties. I deleted them off my facebook page.They never, ever commented to my posts about being sick, never offered any encouragement or called me after an obviously troubled post. Their silence was just too hurtful. I also had many be hostile. HOSTILE????? What the heck? I mean really? I have been isolated, sick as a dog in my house and you are hostile to me???? Like what could I have done? I am truly still baffled by this.
So I guess I should be able to say, "good riddance". Be happy in the knowledge that it is better that they are out of my life, they weren't true friends. I should feel cleansed, lighter somehow. But I don't. I feel gutted. I feel abandoned. I feel so so lonely. It also leaves me to wonder why? Why am I so easily forgotten? I am left feeling less then. Like there is something wrong with me. I mean how can I share the times I had with those people, only to be forgotten at the drop of a hat. Maybe I am just a crappy forgettable person. Not worth any ones time. Maybe I wasn't a good friend? I don't know.
The sad thing is, knowing what they have done, I would trade back to the way it was. I would love to not have gotten sick, and still had these superficial relationships in my life. It was less lonely. There were fun times. Now there is nothing. Chalk up another loss to my illness. I mean why not strip EVERYTHING in my life away? So a silver lining? No, I think not.
Now having said all this, I will tell you what the true silver lining is. It is the friends that have truly stuck by me. They have been there for me all the way. I love you, you know who you are!!!! They ease the loneliness, the hurt. I wish like heck that I could focus on that and wash away all the hurt from the others. I wish I was capable of that. But I told you I was pathological didn't I?
Monday, September 13, 2010
The world is spinning
So, I wake up today,(for the second time) and got up to let the dogs out. After running into the 3rd wall, I realize that my normal, first get up in the morning dizziness is not going away. If any of my neighbors were watching me put the dogs in the yard, I can just imagine what they thought of me stumbling around like a drunkard at 11:00 in my pjs looking like a hot mess. So after running into a few more walls, I decided this was definately a bed day. Now as 3:00 looms closer and closer, I start to wonder if I will be able to pick up my oldest son from school. I get out of bed and realize, yep still dizzy but not as much as before. Should I try? Of late I have had my brain filled with reports of fatal crashes in the area. Also a wonderful friend of mine posted a lovely little video filled with over 9 minutes of gruesome car accidents and pedestrians being struck, all set to music. I watched it. Two times. I am stupid. Or morbid. But I was horrified and nauseated after watching it. And friggin SCARED!!! Like, those pedestrians or people in the cars could be my family! Uggg. Or what if I screwed up some day and was the driver????? I started having visions of me mowing down some innocent Jr. high school kid. Not cool. I thought to myself "call your sister". Then I went back and forth in my head for another 20 mins or so. Why is this so hard? Asking for help? I mean, it's really not that big of an imposition. My sister lives across the street and 9 houses down. She already goes to pick up her own child at that time. Granted it's 2 different schools, but Hello, we live in a Very Small town. The schools are within like 2 minutes of each other. So why the heck am I torturing my already, obviously oxygen deprived, scrambled up brain trying to make such a stupidly easy decision. What the heck is my problem with asking for help? After pondering this question (like my brain didnt have enough to do) here are some of the answers I came up with:
1. Asking for help is admitting weakness, which I abhor. It is admitting that, horrors of horrors, there is something I cant do!!! It means the stupid illness wins. That really ticks me off.
2. Loss of control. Its stupid and anal, I know. Its the whole, he's my son, I need to be the one in control of his life type of thing. Like maybe I could make SURE he was safe. Uh huh...me with my dizzy body...um not this time Cyndi. Hes definately safer with someone else behind the wheel. Which pisses me off. Again.
3. Guilt. All though I know its not that big of an imposition, I still feel guilty. I mean it is a whole mile out of her way, and she has to deal with that crazy school traffic twice, and it will take her a whole extra 20 minutes....ok Im pathetic. I just cant help it. Somehow guilt got hardwired into my brain.
4. Fear. What if she gets in a car wreck going to pick up MY son? It would be my fault. Or what if she accidently mows down a 12 year old kid? That would be on my conscience for the rest of my life. Her life would be ruined because I couldnt get my butt in the car and drive FOUR LOUSY BLOCKS to pick up my son. Or horrors of horrors there is a wreck and something unmentionable happens to her, her children or my son. I would have to live with the what ifs FOREVER.
Please people, tell me some of this crap goes thru your heads at times!!! Because right now Im sounding like a crazy, control freak, phobic mess!!!!
5. I hate to feel beholden to people. Ok that sounds really witchy. Like I am a brat that doesnt like to do things for others. That is so not true! Really! Its just that at this time in my life, most of the time I CAN'T! I can't return the kindness and that just drives me insane.
So all this is running thru my dumb head and then I think. "Cyndi, quit being your pathetic self. This is your SISTER! You know, the woman who is one of the handful of people in your life that truly KNOWS the crap you go thru daily. The one who WANTS to help you. The one that would be supremely pissed off if you DIDN'T call for help (yep, know that from past experiances of being stupid and not asking and her finding out).
So I called. And she was like "of course". And she arrived with all persons and vehicles intact. No biggie.
I gave myself a brain aneurism for nothing. Again. {{{{{{{sigh}}}}}}}}}. I am pathetic.
The end.
1. Asking for help is admitting weakness, which I abhor. It is admitting that, horrors of horrors, there is something I cant do!!! It means the stupid illness wins. That really ticks me off.
2. Loss of control. Its stupid and anal, I know. Its the whole, he's my son, I need to be the one in control of his life type of thing. Like maybe I could make SURE he was safe. Uh huh...me with my dizzy body...um not this time Cyndi. Hes definately safer with someone else behind the wheel. Which pisses me off. Again.
3. Guilt. All though I know its not that big of an imposition, I still feel guilty. I mean it is a whole mile out of her way, and she has to deal with that crazy school traffic twice, and it will take her a whole extra 20 minutes....ok Im pathetic. I just cant help it. Somehow guilt got hardwired into my brain.
4. Fear. What if she gets in a car wreck going to pick up MY son? It would be my fault. Or what if she accidently mows down a 12 year old kid? That would be on my conscience for the rest of my life. Her life would be ruined because I couldnt get my butt in the car and drive FOUR LOUSY BLOCKS to pick up my son. Or horrors of horrors there is a wreck and something unmentionable happens to her, her children or my son. I would have to live with the what ifs FOREVER.
Please people, tell me some of this crap goes thru your heads at times!!! Because right now Im sounding like a crazy, control freak, phobic mess!!!!
5. I hate to feel beholden to people. Ok that sounds really witchy. Like I am a brat that doesnt like to do things for others. That is so not true! Really! Its just that at this time in my life, most of the time I CAN'T! I can't return the kindness and that just drives me insane.
So all this is running thru my dumb head and then I think. "Cyndi, quit being your pathetic self. This is your SISTER! You know, the woman who is one of the handful of people in your life that truly KNOWS the crap you go thru daily. The one who WANTS to help you. The one that would be supremely pissed off if you DIDN'T call for help (yep, know that from past experiances of being stupid and not asking and her finding out).
So I called. And she was like "of course". And she arrived with all persons and vehicles intact. No biggie.
I gave myself a brain aneurism for nothing. Again. {{{{{{{sigh}}}}}}}}}. I am pathetic.
The end.
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