I'm cave dwelling again. Down in that dark, dank pit. I'm sorry. I know some of you may be hoping this would be a happier post right? Sorry but in the brief moments of joy I experience, I don't waste them by sitting at the computer. Maybe someday, I will write about them also. Right now I have to get this darkness out. I know I'm not alone in my cave. Over the last few days I have heard from several of my fellow dysautonmia/Ehler Danlos Syndrome friends. They are feeling done. They want to give up. I sometimes struggle with what to tell them. Its hard to be encouraging when you are in the same exact place. The fight is exhausting. I was honest with a friend, and told her the thought of ending it is always there, a serpent thought, slithering through my mind relentlessly. It tells me how tired I am. How sick. How hard this is. How peaceful it would be. I could finally just REST. Sometimes it is soo soo tempting, but most of the time it is just torturous. I would never do that to my family. EVER. So it taunts me. I have never been in a cave so deep, so dark for so long until this illness hit me. I claw and scratch my way to the light every so often, look around with squinty eyes, sometimes even FEEL the light. Brief times of reprieve from the dark. But I always fall. Sometimes just a little, so I can still see the light, lots of times, all the way to the bottom. Its dark and lonely down here. Oh the thoughts that go through the mind in that pitch black place. Terrible things like, "why does God hate me, I am done with Him". Being jealous of cancer patients. Gasp! I know its awful. I know I'm not alone in feeling that, thank God. Why would you be jealous of them, you ask? A little part of my brain says its because they are either gonna get treatment and get better, or they will get to be released from the suffering. I know, it is horrible, I KNOW! And if i was told I had cancer tomorrow it could be a whole different story. Who knows. Do any of us who, at times feel so ready to give up, really want to DIE? I don't think so. We just want relief from the suffering. We want to LIVE. I feel I am not really living, just enduring,struggling, existing, suffering. The endlessness of it staggers me. I just cant fathom still doing this in 1 year, 5 years, 10 YEARS! The thought is so agonizing, the urge to opt out is there, always there. To exert some control over our powerlessness. Because there is no control of anything with this illness. I cant control my body, so I cant plan a life. I cant work, so I am powerless against the debt that is piling up from medical bills and the fall out of those bills. Debt from which, I cant ever see us emerging from. ENDLESS ENDLESS ENDLESS. Endless illness, endless stress,endless struggling. What kind of existence is this? I have become a master of deception. I told my husband I was depressed and he was actually shocked! I guess I'm doing a great job of hiding my cave from others. I have come to really hate the question, "so how are you doing?" Trust me people, you don't want the real answer. I know there are some who would say I need to be more positive. Please believe me when I say I have TRIED and TRIED to have a totally positive attitude. Sometimes, for a short while, I succeed. But then I find myself here again, battered and bruised, feeling like a failure, feeling less then those forever optimistic people with this illness. Feeling lonelier then ever. I also am left to wonder if my emotions are my own. Yet another uncontrollable part of this illness is its effects on the emotions. My body surges fight or flight chemicals randomly. So I can go from feeling calm to frantic in seconds. Let me tell you, I now understand the fight or flight effect. It is not just panic attacks. It is not just the flying high heart rate and shakiness. Oh no. The fight part of it has a definite sharp edge to it. I want to punch something. There is this ugly edginess, which sometimes is actually rage. I think my meds add to that. I have also been told by a doctor that chronic pain actually changes chemicals in the brain which leads to feeling depression. So I can finally get to the light, be soaking it in, enjoying life, and then BAM!!! My body THROWS me back into the cave. My mind is kicking and screaming against it to no avail. Powerless. So powerless.
I'm also floundering in my relationship with my Father. He is so far, far up there in my deep, deep cave. I cant reach Him, cant feel Him down here in the dark. I miss Him. I need Him. I don't feel His love or His peace. I know He is always there. So I feel,in yet another way, in my walk, I am failing. I am not weathering the storm with Him. I just cant seem to get to that place. I want so badly to be there. To be that person who radiates their faith through the storms of life. It kills me that I'm not that person, kills me. Holy Spirit, please help me!
I have considered seeking help. I am paralyzed by trying to start yet another search for a trustworthy counselor, preferably, a christian and one who knows how to treat people with chronic illnesses. Probably impossible in this place I live in. I'm also so reluctant to make more medical debt. I cant do it. The stress of it is overwhelming. So for now I will write it down, vent it out here. I'm sorry if you get tired of it. Maybe someday the cave wont be so deep. Maybe someday I will post about those moments I feel and see the light. Maybe. I really hope so...
Wednesday, December 8, 2010
Wednesday, November 3, 2010
Struggling
I know I haven't posted in a very long time. A lot has happened. I went to Alabama to a dysautonomia doc for testing and after 3 years I have finally been validated. Its official. I have Dysautonomia, POTS (postural orthostatic tachycardia syndrome) and one other thing I didn't know, apparently the last jerk cardiologist missed on their echo, Mitral Valve Prolapse. Throw all that in with the hypermobile joint syndrome (which is probably Ehler Danos Syndrome) and it all equals, a big giant mess. Of course I did not get to see the doctor I drove 3 hours, and took 2 planes each way to see. She left a half hour before I got to her to pick up a sick kid. I was given 3 meds plus the 2 I was prescribed by my jerk doc here in town before I left. So that makes a grand total of 6 meds. I am having trouble with the first one. Its making me have extreme feelings of anger, extreme irritability and even rage. I have not yet taken the other 2. The second is in a family of drugs I have taken before and I HATED the way it made me feel. Like a zombie. So I'm scared to take it. The 3rd is guess what? ANOTHER FRIGGIN BETA BLOCKER!!!!! Yet another doc did not take me seriously when I told her my side effects are horrific from every single one I have taken!!!! She said it was weird that I have those yet when I look up the side effects of the drugs, there they all are under the side effects, that you are to call the doc immediately if you have!!!!
I am so discouraged that I am beside myself. These are the meds that are supposed to help me...and I cant put them in my mouth...I just cant do it. Because when you are barely functioning with what you have and you know the drugs are going to make you worse, I just cant put them in my mouth. I CANT DO IT. And now I have to call the doc in Alabama and tell them to change every single one of the meds and they are gonna hate me. I keep wondering if it had been the right doc if she would have listened better. This one was rushed and somewhat patronizing. It was just my luck not to see her. I know she is better because Kayla (my friend that helped me out in bama who also sees Dr Moore) was asking if she went over this and that and did she talk to me about that? And I was like, no no no. She really didn't say much...and at the moment I was just so overwhelmed by her saying I have a classic case of dysautonomia, that a lot of stuff just slid over me. I did protest the beta blockers and for awhile she was talking calicum channel blockers, but somehow I ended back up on the betas. I don't know what to do. I know my body. I know how I will respond to these drugs. Do I refuse them and risk being labeled non compliant? Or take them and let them make me feel like death even more just to prove to them...if they would even believe me.
So I am overwhelmed. I have lost the hope that was on the horizon of the diagnosis. It just all went to crap. I knew it wouldn't be easy. But to be given 3 meds that I know feel like poison to me, is just my luck. I am lost. I don't want to do this anymore. I feel like I am not even capable of having coping mechanisms, because the disease and now the meds are stripping away the sane me and giving me this irritable, raging me that makes me hate the world and makes me yearn to punch something, anything to get relief from it.
So fun. And that's just the emotional side of it. The physical side has not changed. Migraines, dizziness, fatigue,nausea, flushing, burning and stabbing feet, the constant pain. (yeah I found out my right arm is so loose in the socket, it partially dislocates everytime I use it, and my jerk doc took the pain pills I could tolerate away, cuz he thinks they will react with the migraine med, even though the pharmicist researched it and said the risk is so tiny, he wouldnt worry about it. He gave me vicodin instead. So now Im on opiates and benzodiazepines, hello druggie zombie).
But I must stuff it all down. Pretend normalcy. Try not to bite my families heads off. The other nite I told hubby (who kept talking thru a show I was watching, making fun of it) that I couldn't hear the TV. When he asked if I wanted him to turn it up, I told him "no I want you to just shut up so I can hear it!!!!) What I really wanted to say was for him to just get the heck outta of the room. NICE. Thank you Klonopin. We barely see each other and now I'm a seething bucket of rage. Awesome.
My life goes by in a blur. I never even know what day it is. Its just a minute to minute struggle to function. I am spread thin by trying to practically single parent my 2 boys. Juggling their busy schedules and not forget anyone. Trying to deal with the financial stress of paying bills and ignoring collectors million calls because they want more money then i am able to send. trying to keep the house from being a giant stinking cesspool. Keeping up the car and buying a new battery after getting stranded in a dead car. You know, LIFE. But life spreads me so thin, that its just a smear of things for me. Always out of focus. I feel like I'm spread so thin, I am forever forgetting something, disappointing someone, letting someone down, messing up. But I have to do it. Put a smile on, for my boys, for the world. Act like I'm OK. Like I'm doing it. Handling it. Stuff it down, stuff it down. No time for crying,raging.
And now that word has spread that I got diagnosed, the "are you feeling better yet" questions have started. I hate to say "nope and now I feel like punching you for asking me because this new med is giving me rage issues" cuz that just wouldn't be very nice now would it? I think not.
I am also supposed to be starting the disability process. I cant seem to find the energy to do it. I have been given so little hope of getting it, i just cant seem to start a process that I know will likely take so much energy and yet again, like everything else, yield only frustration and failure.
I'M SO LOST. Please world just let me curl up in bed and forget about everything. I don't want to play life anymore.
Some of you may be wondering where my faith is in all this. It is there. I still believe. I just am having such a hard time connecting to my Father. I feel my prayers bounce off the ceiling. I know its me. He is always there waiting for me, but something in my heart is keeping me from Him. Anger? Bitterness? Maybe. I try to read the Word but cant make this fuzzy brain focus. My heart aches from it, this loss of connection, but try as I might, i just cant find it. SO again I am adrift...lost.
All of this turmoil is going on inside,but if you see me out, I will smile and chat and try to appear normal. And I look so good you know! If they could just open a little door to my soul, what would come out would knock them to the floor, or have them running away screaming, because it really, really doesn't look good on the inside. Not even a little.
So to those that are wondering how I'm coping with my diagnosis, there it is. I'm not. At all. It sucks. My hubby was a wee bit confused when I called him sobbing from the hotel room after I got the diagnosis. He said "well you knew that's what you had". Ya, I know. But to hear it out loud, once the initial joy and relief of being validated fades, reality sets in. Maybe I was wishing they would miraculously find it to be something else, something easily curable. One little pill would fix me right up. But no, I have a crappy, complicated, incurable illness. No I'm not gonna die tomorrow from it, but I will feel like I'm dying a little everyday. The suffering will just go on and on and on and on forever. Yay. A friend of mine was diagnosed with breast cancer a few months ago. They caught it early, thank God, and she chose radiation. I saw her a few days ago and asked how she was doing. She told me today was her last treatment. That's is. She is done. Cured. Now I know, I know...it can come back and all that. I know. But there was a part of me that was jealous. She was done. She can recover now from the side effects of the radiation. She will feel better now. I was overjoyed for her, yet jealous. Jealous of someone diagnosed with breast cancer. Awesome. Makes me feel so wonderful about myself. I have been told by other dysautonomics they totally have felt that so I guess I'm not alone in my awesomeness.
So that's it in all its ugliness. This is who I am right now. But aren't I looking so good?
I am so discouraged that I am beside myself. These are the meds that are supposed to help me...and I cant put them in my mouth...I just cant do it. Because when you are barely functioning with what you have and you know the drugs are going to make you worse, I just cant put them in my mouth. I CANT DO IT. And now I have to call the doc in Alabama and tell them to change every single one of the meds and they are gonna hate me. I keep wondering if it had been the right doc if she would have listened better. This one was rushed and somewhat patronizing. It was just my luck not to see her. I know she is better because Kayla (my friend that helped me out in bama who also sees Dr Moore) was asking if she went over this and that and did she talk to me about that? And I was like, no no no. She really didn't say much...and at the moment I was just so overwhelmed by her saying I have a classic case of dysautonomia, that a lot of stuff just slid over me. I did protest the beta blockers and for awhile she was talking calicum channel blockers, but somehow I ended back up on the betas. I don't know what to do. I know my body. I know how I will respond to these drugs. Do I refuse them and risk being labeled non compliant? Or take them and let them make me feel like death even more just to prove to them...if they would even believe me.
So I am overwhelmed. I have lost the hope that was on the horizon of the diagnosis. It just all went to crap. I knew it wouldn't be easy. But to be given 3 meds that I know feel like poison to me, is just my luck. I am lost. I don't want to do this anymore. I feel like I am not even capable of having coping mechanisms, because the disease and now the meds are stripping away the sane me and giving me this irritable, raging me that makes me hate the world and makes me yearn to punch something, anything to get relief from it.
So fun. And that's just the emotional side of it. The physical side has not changed. Migraines, dizziness, fatigue,nausea, flushing, burning and stabbing feet, the constant pain. (yeah I found out my right arm is so loose in the socket, it partially dislocates everytime I use it, and my jerk doc took the pain pills I could tolerate away, cuz he thinks they will react with the migraine med, even though the pharmicist researched it and said the risk is so tiny, he wouldnt worry about it. He gave me vicodin instead. So now Im on opiates and benzodiazepines, hello druggie zombie).
But I must stuff it all down. Pretend normalcy. Try not to bite my families heads off. The other nite I told hubby (who kept talking thru a show I was watching, making fun of it) that I couldn't hear the TV. When he asked if I wanted him to turn it up, I told him "no I want you to just shut up so I can hear it!!!!) What I really wanted to say was for him to just get the heck outta of the room. NICE. Thank you Klonopin. We barely see each other and now I'm a seething bucket of rage. Awesome.
My life goes by in a blur. I never even know what day it is. Its just a minute to minute struggle to function. I am spread thin by trying to practically single parent my 2 boys. Juggling their busy schedules and not forget anyone. Trying to deal with the financial stress of paying bills and ignoring collectors million calls because they want more money then i am able to send. trying to keep the house from being a giant stinking cesspool. Keeping up the car and buying a new battery after getting stranded in a dead car. You know, LIFE. But life spreads me so thin, that its just a smear of things for me. Always out of focus. I feel like I'm spread so thin, I am forever forgetting something, disappointing someone, letting someone down, messing up. But I have to do it. Put a smile on, for my boys, for the world. Act like I'm OK. Like I'm doing it. Handling it. Stuff it down, stuff it down. No time for crying,raging.
And now that word has spread that I got diagnosed, the "are you feeling better yet" questions have started. I hate to say "nope and now I feel like punching you for asking me because this new med is giving me rage issues" cuz that just wouldn't be very nice now would it? I think not.
I am also supposed to be starting the disability process. I cant seem to find the energy to do it. I have been given so little hope of getting it, i just cant seem to start a process that I know will likely take so much energy and yet again, like everything else, yield only frustration and failure.
I'M SO LOST. Please world just let me curl up in bed and forget about everything. I don't want to play life anymore.
Some of you may be wondering where my faith is in all this. It is there. I still believe. I just am having such a hard time connecting to my Father. I feel my prayers bounce off the ceiling. I know its me. He is always there waiting for me, but something in my heart is keeping me from Him. Anger? Bitterness? Maybe. I try to read the Word but cant make this fuzzy brain focus. My heart aches from it, this loss of connection, but try as I might, i just cant find it. SO again I am adrift...lost.
All of this turmoil is going on inside,but if you see me out, I will smile and chat and try to appear normal. And I look so good you know! If they could just open a little door to my soul, what would come out would knock them to the floor, or have them running away screaming, because it really, really doesn't look good on the inside. Not even a little.
So to those that are wondering how I'm coping with my diagnosis, there it is. I'm not. At all. It sucks. My hubby was a wee bit confused when I called him sobbing from the hotel room after I got the diagnosis. He said "well you knew that's what you had". Ya, I know. But to hear it out loud, once the initial joy and relief of being validated fades, reality sets in. Maybe I was wishing they would miraculously find it to be something else, something easily curable. One little pill would fix me right up. But no, I have a crappy, complicated, incurable illness. No I'm not gonna die tomorrow from it, but I will feel like I'm dying a little everyday. The suffering will just go on and on and on and on forever. Yay. A friend of mine was diagnosed with breast cancer a few months ago. They caught it early, thank God, and she chose radiation. I saw her a few days ago and asked how she was doing. She told me today was her last treatment. That's is. She is done. Cured. Now I know, I know...it can come back and all that. I know. But there was a part of me that was jealous. She was done. She can recover now from the side effects of the radiation. She will feel better now. I was overjoyed for her, yet jealous. Jealous of someone diagnosed with breast cancer. Awesome. Makes me feel so wonderful about myself. I have been told by other dysautonomics they totally have felt that so I guess I'm not alone in my awesomeness.
So that's it in all its ugliness. This is who I am right now. But aren't I looking so good?
Monday, October 4, 2010
Pumpkins, Fun, & Consequences
Saturday was a super fun day!!! Well mostly. The morning was kinda bleh and I'll get to the evening part later, but the middle was super fun!!!! I pretty much know its a good day when I haven't wished Jesus would take me home even one time! Yay! I got it in my head that we HAD to go to the pumpkin patch to.day. I knew this may not be the brightest idea because it was gonna be like 5000 degrees out there, (um, hello weather, its FALL! Please send some coolness!) but I was so bored with being in this house. If I didn't get out soon I knew I was gonna lose it. I also just knew if I didn't get out there pronto they were gonna run out of all the winter squash I just HAD to have. They did last year. Of course that was because it SNOWED in October and ruined some of their crops, but hey, you just never know.
I could have waited.
There was lots. I might even have to go back and get more. Yes we like squash THAT much. Well me and my boys do. Hubby thinks its disgusting. So more for us. And he was totally rolling his eyes when I said I might come back for more. Might have something to do with the fact that several that I bought last year were forgotten in the pantry and went bad. Soo not gonna happen this year though. More eye rolling from hubby, followed by some glaring from me. And then we laughed. So then we were off, into the ginormous pumpkin patch to find the perfect future jack-o-lanterns. Did I mention it was ginormous? Did I also mention it was 5000 degrees and we left the waters in the car? Not smart. I thought I was gonna die. Or pass out, which so would have hurt because, did you know, that pumpkin vines are ultra pokey? They also leave little pokies in your skin like a cactus. Fun! Let me show you how ginormous it was.
I don't know if you can tell how ginormous it is, and I'm totally no good at guestimating acreage, sooo, you get the picture right? There were so many awesome pumpkins it was hard to choose. It became really hard when I no longer had any oxygen to my head. There were some HUGE pumpkins out there. And reddish flat ones. And warty ones. 
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We ended up with these babies...
I ended up sitting on huge pumpkins with my head between my knees many, many times. I made it worse by laughing. But I could only imagine how dumb I looked. It was funny.
I gave the owner one of my photos I took out at his place last year. He is a cool guy. He and his daughter were ultra impressed which gave me warm fuzzies. You could totally buy one if I had figured out how to set up my photo website. But I haven't. I tried and my head exploded.
After our pumpkin adventure we totally splurged and went out for some dinner. I think we were all still a little wonky from the heat and ended up laughing our heads off through the whole meal. Embarrassing, but way fun! Not wanting the good day to end we went to the local Dollar Tree. I won the find-the-most-disgusting-food contest with a can of some kind of fish that sloshed around. We found these candies....
Pirate Chomper gummy candy!!! Hilarious!!!! All the way home we did this...
I laughed so hard I almost passed out. Again. I also thought for a little while I might throw up. It was a close call. Later we played cards. Good times!! But then, little by little, I felt it creeping up. Then, just like that, my body said that the good times were over. It was time to pay for the day. I mean, did I really think I could walk in the heat, then walk around a store, and laugh that hard repeatedly without any consequences? BLAM!!! MIGRAINE!!! With a whole bunch of other yucky stuff thrown in like, extreme thirst, pain, tachycardia, tremors, nausea, etc. And just like that my mood dumped. Why do I have to pay every time I push myself just a tiny bit? I mean how is that fair?. It really just gets so old. That's how it is with this illness though. We get tired of being sick, so we go do something we used to do, push ourselves for our sanity, and then pay for it. I really hope to get some help this month from the specialist I'm going to see, so that having fun and laughing doesn't make me sick anymore. Because it just felt so good to have fun...at least until it didn't.
**The pictures in my blog are my property. Please don't be jerky and steal them. Thanks!***
Tuesday, September 28, 2010
Living with dysautonomia is a bowl full of cherries...
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!
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!
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.
Sunday, June 6, 2010
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