Jedward. Oh my GOD but they're flippin' hilarious. Found them on (where else?) Graham Norton. Two Irish twin boys (twins usually come in twos....), 17 when they started out on UKs X-factor so they're 19 now. They sing, and dance and talk. They talk a LOT. The talking isn't part of their act but it's part of the obscurity and hilarity. I told Marissa about them and they entertain her too. And Skennifer. Just need to drag Tara in and we can sing "Lipstick" next time we're at the Ship.
My migraine is gone for now! That's a HUGE happy thing! Especially since I'm almost out of pills (they are on their way and should arrive probably tomorrow). Four-day migraine, it was here this morning when I woke up so I called out from work and went back to bed and miracle of miracles I fell back asleep. I woke up at 12:45 and it's GONE. The Howee inside me is tap-dancing like mad.
Kittens are always happy, I have one next to me purring away, and one across the room being silly and meowing for no reason. Both of them have finally stopped shedding (maybe the super hot weather is done?) and have their extra-soft fur back on.
Speaking of super hot weather, it's NOT hot out. It's actually rather cool. Cool enough that my window is only partly open and I have a blanket over my legs. It's windy out. I love this weather.......
Some Jedward for you.
http://www.youtube.com/watch?v=vtKFmct9nCI
http://www.youtube.com/watch?v=pXouSYabDig (flashy light warning)
Monday, 26 September 2011
Saturday, 24 September 2011
He always makes me laugh...
Graham Norton.
I have him on now. I record his show, just because he makes me laugh. He's one of my happy thoughts, always. He's a British talk show host. Oh, I know. He's done a lot more, but that's what I record. He's completely unrestrained, and does things that wouldn't be allowed on US shows. He and his guests are bleeped all the time by US censors. Silly US prudes. Right now his guests are Sharon & Ozzy Osborne and Ricky Gervais. I'm watching it and listening to the conversation, but I could just listen to them laughing and it would cheer me up, especially Ricky.
So I had to clean out the litter box. Yes, one of the joys of cat ownership. I love my cats. (I really do. *L* NOT finding something good to say about myself!) Cleaning out the litter box.......before the new body that I got for Little Christmas, I did it, didn't LOVE it but didn't really think twice about it. Now it's an adventure. First, getting the litter home from the store. It's cheaper in the bigger containers and since I'm paying over $200 a month in Rx costs money is on my mind a lot (trying not to bring it into my mind a lot......going to focus on manifesting it somehow!) so I do the brand/cost comparison at the store, and look for coupons. Hoist it into the cart, then if I'm lucky I'm at a store where they can scan it in the cart and I don't have to haul it up onto the counter for the checker-clerk. Haul it out of the cart into the trunk, drive home then out of the trunk and totter with it into the house. Each of these times I'm internally praying "don't get dizzy don't get dizzy don't get dizzy" because picking up heavy things from low spots will usually, 9 times out of 10, trigger a great dizzy episode. The litter boxes are downstairs (and they're staying there!) so the container can stay downstairs. Score! But today when I went to the store I had two bags to carry in (each rather heavy) as well as my purse and my dinner. So I left the litter in the car. Tonight at about 9PM I realized...I need to clean out the boxes.
The meds I'm taking that were working a little bit for the fibro pain, Savella, isn't working any more. When my doctor prescribed it she said that for some people it may only work for a short while, then it would stop. I was hoping that wouldn't happen. The relief it gave wasn't huge but it did give some relieve....I wasn't aware of how much until it stopped working completely. I'm back to everything aching, "happy face scale - mid-range" all the time. (Side note, I love Ozzy. He has no filter at all. *L*) My doc hasn't prescribed anything to replace it. I've mentioned that she's stopped doing her job? I have a call out on find a new doctor.....
Today the "happy face scale" has moved up and is higher, don't know why and probably never really will. The migraine level isn't so bad though, I've only had to take one migraine pill and an ibuprofen. And drink lots of water, of course! (also took a forbidden nap...heheheh) I've got the Tin Man walk going today. So walking downstairs, hauling the 27 pound cat litter out of the trunk and bringing it in and cleaning out two litter boxes didn't sound appealing. When I got there, the sweet adorable teeny kittens had been quite active and kicked litter all over the floor so I had to sweep too. By the time I got to the trash can, I was crying. I rarely cry because things hurt. I think it was partly because it hurt and partly frustration. Days and times like that I do feel quite wimpy. There's no other adequate word.
What saved the moment? It's a beautiful night. It's clear out, and there are a gazillion stars, with a few wispy clouds. I leaned back on the car and relaxed and found the 7 Sisters and listened to a little boy laughing as he ran down the street, taking a walk with his dad. After a few minutes the dizziness went away and I got my breath back. The sound of the little boy laughing faded away and it got still.
I went back inside and upstairs, and sat down on the couch. Gromit is next to me, a giant white furball and Wallace is looking at me from across the room, her eyelids drooping as she starts to snooze. They are worth it. They're middle-aged; they're 12 now. I hope they last quite awhile longer. Will I get other cats when they go? I really don't know and I'm not going to think about it now. When I wake up tomorrow I'll be sandwiched in between them, struggling to get out to use the bathroom. Oh, and Wallace is still carrying her Snoopy carcass around like her baby, so cute!
I didn't provide a song to listen to, but since Ricky Gervais makes me laugh I'm adding this. It's a lullaby, the softer side of Ricky.
http://www.youtube.com/watch?v=Jc20vMz0V7Q
I have him on now. I record his show, just because he makes me laugh. He's one of my happy thoughts, always. He's a British talk show host. Oh, I know. He's done a lot more, but that's what I record. He's completely unrestrained, and does things that wouldn't be allowed on US shows. He and his guests are bleeped all the time by US censors. Silly US prudes. Right now his guests are Sharon & Ozzy Osborne and Ricky Gervais. I'm watching it and listening to the conversation, but I could just listen to them laughing and it would cheer me up, especially Ricky.
So I had to clean out the litter box. Yes, one of the joys of cat ownership. I love my cats. (I really do. *L* NOT finding something good to say about myself!) Cleaning out the litter box.......before the new body that I got for Little Christmas, I did it, didn't LOVE it but didn't really think twice about it. Now it's an adventure. First, getting the litter home from the store. It's cheaper in the bigger containers and since I'm paying over $200 a month in Rx costs money is on my mind a lot (trying not to bring it into my mind a lot......going to focus on manifesting it somehow!) so I do the brand/cost comparison at the store, and look for coupons. Hoist it into the cart, then if I'm lucky I'm at a store where they can scan it in the cart and I don't have to haul it up onto the counter for the checker-clerk. Haul it out of the cart into the trunk, drive home then out of the trunk and totter with it into the house. Each of these times I'm internally praying "don't get dizzy don't get dizzy don't get dizzy" because picking up heavy things from low spots will usually, 9 times out of 10, trigger a great dizzy episode. The litter boxes are downstairs (and they're staying there!) so the container can stay downstairs. Score! But today when I went to the store I had two bags to carry in (each rather heavy) as well as my purse and my dinner. So I left the litter in the car. Tonight at about 9PM I realized...I need to clean out the boxes.
The meds I'm taking that were working a little bit for the fibro pain, Savella, isn't working any more. When my doctor prescribed it she said that for some people it may only work for a short while, then it would stop. I was hoping that wouldn't happen. The relief it gave wasn't huge but it did give some relieve....I wasn't aware of how much until it stopped working completely. I'm back to everything aching, "happy face scale - mid-range" all the time. (Side note, I love Ozzy. He has no filter at all. *L*) My doc hasn't prescribed anything to replace it. I've mentioned that she's stopped doing her job? I have a call out on find a new doctor.....
Today the "happy face scale" has moved up and is higher, don't know why and probably never really will. The migraine level isn't so bad though, I've only had to take one migraine pill and an ibuprofen. And drink lots of water, of course! (also took a forbidden nap...heheheh) I've got the Tin Man walk going today. So walking downstairs, hauling the 27 pound cat litter out of the trunk and bringing it in and cleaning out two litter boxes didn't sound appealing. When I got there, the sweet adorable teeny kittens had been quite active and kicked litter all over the floor so I had to sweep too. By the time I got to the trash can, I was crying. I rarely cry because things hurt. I think it was partly because it hurt and partly frustration. Days and times like that I do feel quite wimpy. There's no other adequate word.
What saved the moment? It's a beautiful night. It's clear out, and there are a gazillion stars, with a few wispy clouds. I leaned back on the car and relaxed and found the 7 Sisters and listened to a little boy laughing as he ran down the street, taking a walk with his dad. After a few minutes the dizziness went away and I got my breath back. The sound of the little boy laughing faded away and it got still.
I went back inside and upstairs, and sat down on the couch. Gromit is next to me, a giant white furball and Wallace is looking at me from across the room, her eyelids drooping as she starts to snooze. They are worth it. They're middle-aged; they're 12 now. I hope they last quite awhile longer. Will I get other cats when they go? I really don't know and I'm not going to think about it now. When I wake up tomorrow I'll be sandwiched in between them, struggling to get out to use the bathroom. Oh, and Wallace is still carrying her Snoopy carcass around like her baby, so cute!
I didn't provide a song to listen to, but since Ricky Gervais makes me laugh I'm adding this. It's a lullaby, the softer side of Ricky.
http://www.youtube.com/watch?v=Jc20vMz0V7Q
Tuesday, 20 September 2011
Page Two.... He's reading "The Queen"....that's an in-joke you know
http://www.youtube.com/watch?v=xtrEN-YKLBM
Some music to listen to while you read. The lyrics are apt for how I've felt lately. (If you don't like the song, read the lyrics I'm going to post at the end.....please)
These first couple of posts....blogs....blurbs? may not be the most positive because I'm going to be venting. Fair warning. This too shall pass. I kind of feel like the Black Knight in the Monte Python movie in a way though. I'm not dead yet!
First off, people keep saying, or I should say, posting on Facebook (more about that in another post), "hope your better!" or "are you better yet?". Clarification for everyone. I have multiple, CHRONIC, LIFELONG diagnosis (diagnosii? is it like rhinocerii?). I'm not going to get over this. I'm not getting better. It's not going to go away. I'm not going to die from any of it, but I'm also not going to wake up and be better tomorrow. If I'm lucky, and I pray that I am, I'll find the right combination of doctors, therapies and medications that work and I can afford (KEY...that I can afford) that will manage my conditions and bring quality back into my life. Right now, I don't have it. "It's the terror of knowing what this world is about......"
I have been diagnosed with myofascial pain syndrome (severe), chronic fatigue syndrome (severe), fibromyalgia (severe), and IBS (severe). I've been told that I have neurally mediated hypotension, 99% certain, but until I can get the testing done I won't have a confirmed diagnosis. There are several other conditions that I don't remember the names of that have to do with how my system processes and metabolizes which accounts for the severely low vitamin D levels, and most likely may play into why I have trouble losing weight (not why I gained it!). (I've been on supplements for the Vitamin D for quite some time, so far there's been a slight increase in these levels). I'd have to pull out the paperwork for the other conditions - I admit I don't remember the names. Oh, chronic migraines have been in there for years, also severe (no shit sherlock there, huh.... *L*) I've had a couple low results from blood tests that my regular doctor is supposed to be looking into, however she's failing miserably at her job (don't have the time to go into THAT today!) that most likely is also factoring into all of this.
A lot of people have heard or read that fibromyalgia isn't a real condition....it's "all in your head". Bullshit. It's real. It's more than just an ache. There are some really good articles and websites out there - (I put a link to a good one where I wrote about what fibromyalgia entails.) (Here's one of those snarky comments that will go away with time, and it doesn't apply to all of you so for those of you who have done this, I'm sorry and it doesn't apply to you. When you find out that someone you love is diagnosed with something that you don't know anything about.. RESEARCH IT. Don't assume that they're ignoring people and subsequently ignore THEM. Don't ask them two months later what's going on. Use google! Go to the library! Call them THEN. Send a card. Send flowers. Do SOMETHING. But don't ignore them. They don't feel good. They're tired, they're sick, they're probably sleeping on the couch or in bed or curled up in a ball. They need comfort and support, and they need help and support. Guess what? Two months later? They STILL feel like crap, and still need help. The only difference? They have to drag their butt out of bed every day, get dressed and go to work. And the two people who have been calling them? They are soooo worn out from being the support system. The online friends, the half-dozen who they have never met that live 1000 miles away, or literally half a world away, can only do so much using Skype every other week because 20-hour time zone differences make it really hard to communicate. When a snarky comment like this is posted.....that person who is sick REALLY needs your help and support. OK, snarky comment done.)
I'm paraphrasing.... fibromyalgia is widespread musculoskeletal pain. It affects ligaments, tendons and muscles everywhere in the body. (For me, this includes the "hollow cavity" area, meaning the area below the diaphragm down to the pelvis. It was cramped, like a Charley horse kind of cramp. literally, for weeks at a time. Brilliant. But I digress.....) Fibromyalgia isn't classified as a disease, but a "condition" that causes many different symptoms. The symptoms affect all systems of the body. The name fibromyalgia comes from "fibro" meaning fibrous tissue (such as ligaments & tendons), "my" meaning muscles and "algia" meaning pain. (I find stuff like that really interesting....words fascinate me....I'm a dork *L*.)
Aside from the aches & pains that the majority of people with fibromyalgia have (muscle stiffness, soreness, burning, twitching,), it can often cause other associated symptoms such as sleep disorders, fatigue, morning stiffness or general stiffness that can last all day, irritable bowel syndrome, vision problems, nausea, cold and/or heat sensitivity, cognitive or memory impairment, anxiety, skin complaints, muscle twitches and/or weakness, depression, multiple chemical sensitivity syndromes, TMJ syndrome, memory loss and chest syndrome. These symptoms can overlap. (not an inclusive list, but a pretty complete one. NOT my list, that will come later!)
Who is lucky enough to have fibromyalgia? It can affect people of all ages, races, and backgrounds. It affects more women than men, especially during child-bearing years. (That really sucks....) The elderly and children can also be affected.
The symptoms I have that affect me daily are muscle pains, aches, stiffness & soreness, burning, morning stiffness (sometimes all day), evening stiffness, vision problems, fatigue (this is different from the chronic fatigue that I've been diagnosed with, believe it or don't *L*), nausea (yea for random vomiting!), sleep disorders, weight disorders (I've lost 40+ pounds since February), chronic headaches (not migraines...when I don't have a migraine headache, I have a generic headache), chemical sensitivity (perfumes and scents make me sneeze up a storm and my eyes itch, much more than they used to), cognitive/memory impairment, anxiety, depression, muscle twitches & weakness (drop stuff all the time, have a hard time opening windows, noticing a LOT of this. Goal ...pick up weights at the store and hopefully build some strength back up?), cold and heat sensitivity and memory loss. I think that's all..... They count the things like the needle sensations, or feeling like someone is prying my kneecaps off with a spoon as "widespread pains".
I posted the stuff about fibromyalgia first because it's the condition that most people have heard of, and it's the one that is causing the most widespread pain. http://www.fibromyalgia-symptoms.org This is a great webpage that I found. I used it for myself - I went through pretty much every page. You don't need to do that, but you might want to look at the pages for symptoms. I used it as a reference when I was writing the bits posted above.
Chronic fatigue is well......being tired. *L* A lot. "Severe, continued tiredness that is not relieved by rest and is not directly caused by other medical conditions." Again I'm paraphrasing the rest. It's severe enough to keep you from participating in other activities (like....leaving the house to get toilet paper >.> ), not relieved by bed rest (eg. sleeping), extremely tired for more than 24 hours after exercise/activities that would normally be considered easy (a day at work?), forgetfulness, confusion, concentration problems, joint pain but no swelling or redness, irritability (I HATE this one, really...I do.), muscle aches (how do I decide if it's an ache from this or the fibro? I toss a dice *G*), muscle weakness all over or in multiple locations not explained by any other disorder (OK....maybe this is to blame for suddenly having trouble opening the windows? cause really....they were easy to open two weeks ago and EVERYTHING can't be from the fibro....) and sore lymph nodes. I have all of these.
IBS = Irritable Bowel Syndrome. I said I won't go into details on this. It's severe. I ran out of TP yesterday. We'll leave it at that. O.o
The myofascial pain syndrome has a lot of overlap to both the fibromyalgia AND the chronic fatigue. The part that differs is that, for me, my jaw and neck (and what feels like the back of my head) muscles are always rigid and taut. I have limited range of motion in my jaw and neck joints. It causes popping and clicking (LOUD) in all of my joints, especially the neck. I've noticed that I need to "pop" my neck and upper back - like they're out of alignment, a lot. I don't know if this is related, the feeling like it's out of alignment - I see a "regular" physician who specializes in these conditions in October. I plan on asking then. I'm guessing it is related.
The one that's the most annoying to me, and probably of the most concern is the neurally mediated hypotension. ( http://brendashue.tripod.com/nmh2.html) If I understand it correctly, my brain isn't talking to my heart much anymore so my blood pressure isn't being regulated as it should be. The hypotension causes the dizziness that I'm experiencing, and the feeling that I'm going to faint (and the potential that I CAN faint). I'm supposed to drink a lot of fluid and have a high sodium diet. The foods in the high sodium diet are exactly the foods that I'm not supposed to have because of the migraines. Until I get the tilt table test, my regular doctor won't prescribe anything. She put off figuring out where to get the tilt table test for weeks - I had to raise a stink over the phone. I have the appointment with the cardiologist on October 10th, and she decides if I get the tilt table. Then I go back to my regular doctor, who doesn't know what she's doing.
Under Pressure - David Bowie & Queen
Pressure pushing down on me
Pressing down on you no man ask for
Under pressure - that burns a building down
Splits a family in two
Puts people on streets
It's the terror of knowing
What this world is about
Watching some good friends
Screaming let me out
Pray tomorrow - gets me higher
Pressure on people - people on streets
She been around
Kicked my brains round the floor
These are the days it rains but it never pours
People on streets
People on streets
It's the terror of knowing
What this world is about
Watching some good friends
Screaming let me out
Pray tomorrow - high higher
Turned away from it all like a blind man
Sat on a fence but it don't work
Keep coming up with love but it's so slashed and torn
Why - Ooooh
Insanity laughs under pressure we're cracking
Can't we give ourselves one more chance
Why can't we give love that one more chance
Why can't we give love
Give love give love give love give love
Give love give love give love
Love's such an old fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
Under pressure
Under pressure
Pressure
Some music to listen to while you read. The lyrics are apt for how I've felt lately. (If you don't like the song, read the lyrics I'm going to post at the end.....please)
These first couple of posts....blogs....blurbs? may not be the most positive because I'm going to be venting. Fair warning. This too shall pass. I kind of feel like the Black Knight in the Monte Python movie in a way though. I'm not dead yet!
First off, people keep saying, or I should say, posting on Facebook (more about that in another post), "hope your better!" or "are you better yet?". Clarification for everyone. I have multiple, CHRONIC, LIFELONG diagnosis (diagnosii? is it like rhinocerii?). I'm not going to get over this. I'm not getting better. It's not going to go away. I'm not going to die from any of it, but I'm also not going to wake up and be better tomorrow. If I'm lucky, and I pray that I am, I'll find the right combination of doctors, therapies and medications that work and I can afford (KEY...that I can afford) that will manage my conditions and bring quality back into my life. Right now, I don't have it. "It's the terror of knowing what this world is about......"
I have been diagnosed with myofascial pain syndrome (severe), chronic fatigue syndrome (severe), fibromyalgia (severe), and IBS (severe). I've been told that I have neurally mediated hypotension, 99% certain, but until I can get the testing done I won't have a confirmed diagnosis. There are several other conditions that I don't remember the names of that have to do with how my system processes and metabolizes which accounts for the severely low vitamin D levels, and most likely may play into why I have trouble losing weight (not why I gained it!). (I've been on supplements for the Vitamin D for quite some time, so far there's been a slight increase in these levels). I'd have to pull out the paperwork for the other conditions - I admit I don't remember the names. Oh, chronic migraines have been in there for years, also severe (no shit sherlock there, huh.... *L*) I've had a couple low results from blood tests that my regular doctor is supposed to be looking into, however she's failing miserably at her job (don't have the time to go into THAT today!) that most likely is also factoring into all of this.
A lot of people have heard or read that fibromyalgia isn't a real condition....it's "all in your head". Bullshit. It's real. It's more than just an ache. There are some really good articles and websites out there - (I put a link to a good one where I wrote about what fibromyalgia entails.) (Here's one of those snarky comments that will go away with time, and it doesn't apply to all of you so for those of you who have done this, I'm sorry and it doesn't apply to you. When you find out that someone you love is diagnosed with something that you don't know anything about.. RESEARCH IT. Don't assume that they're ignoring people and subsequently ignore THEM. Don't ask them two months later what's going on. Use google! Go to the library! Call them THEN. Send a card. Send flowers. Do SOMETHING. But don't ignore them. They don't feel good. They're tired, they're sick, they're probably sleeping on the couch or in bed or curled up in a ball. They need comfort and support, and they need help and support. Guess what? Two months later? They STILL feel like crap, and still need help. The only difference? They have to drag their butt out of bed every day, get dressed and go to work. And the two people who have been calling them? They are soooo worn out from being the support system. The online friends, the half-dozen who they have never met that live 1000 miles away, or literally half a world away, can only do so much using Skype every other week because 20-hour time zone differences make it really hard to communicate. When a snarky comment like this is posted.....that person who is sick REALLY needs your help and support. OK, snarky comment done.)
I'm paraphrasing.... fibromyalgia is widespread musculoskeletal pain. It affects ligaments, tendons and muscles everywhere in the body. (For me, this includes the "hollow cavity" area, meaning the area below the diaphragm down to the pelvis. It was cramped, like a Charley horse kind of cramp. literally, for weeks at a time. Brilliant. But I digress.....) Fibromyalgia isn't classified as a disease, but a "condition" that causes many different symptoms. The symptoms affect all systems of the body. The name fibromyalgia comes from "fibro" meaning fibrous tissue (such as ligaments & tendons), "my" meaning muscles and "algia" meaning pain. (I find stuff like that really interesting....words fascinate me....I'm a dork *L*.)
Aside from the aches & pains that the majority of people with fibromyalgia have (muscle stiffness, soreness, burning, twitching,), it can often cause other associated symptoms such as sleep disorders, fatigue, morning stiffness or general stiffness that can last all day, irritable bowel syndrome, vision problems, nausea, cold and/or heat sensitivity, cognitive or memory impairment, anxiety, skin complaints, muscle twitches and/or weakness, depression, multiple chemical sensitivity syndromes, TMJ syndrome, memory loss and chest syndrome. These symptoms can overlap. (not an inclusive list, but a pretty complete one. NOT my list, that will come later!)
Who is lucky enough to have fibromyalgia? It can affect people of all ages, races, and backgrounds. It affects more women than men, especially during child-bearing years. (That really sucks....) The elderly and children can also be affected.
The symptoms I have that affect me daily are muscle pains, aches, stiffness & soreness, burning, morning stiffness (sometimes all day), evening stiffness, vision problems, fatigue (this is different from the chronic fatigue that I've been diagnosed with, believe it or don't *L*), nausea (yea for random vomiting!), sleep disorders, weight disorders (I've lost 40+ pounds since February), chronic headaches (not migraines...when I don't have a migraine headache, I have a generic headache), chemical sensitivity (perfumes and scents make me sneeze up a storm and my eyes itch, much more than they used to), cognitive/memory impairment, anxiety, depression, muscle twitches & weakness (drop stuff all the time, have a hard time opening windows, noticing a LOT of this. Goal ...pick up weights at the store and hopefully build some strength back up?), cold and heat sensitivity and memory loss. I think that's all..... They count the things like the needle sensations, or feeling like someone is prying my kneecaps off with a spoon as "widespread pains".
I posted the stuff about fibromyalgia first because it's the condition that most people have heard of, and it's the one that is causing the most widespread pain. http://www.fibromyalgia-symptoms.org This is a great webpage that I found. I used it for myself - I went through pretty much every page. You don't need to do that, but you might want to look at the pages for symptoms. I used it as a reference when I was writing the bits posted above.
Chronic fatigue is well......being tired. *L* A lot. "Severe, continued tiredness that is not relieved by rest and is not directly caused by other medical conditions." Again I'm paraphrasing the rest. It's severe enough to keep you from participating in other activities (like....leaving the house to get toilet paper >.> ), not relieved by bed rest (eg. sleeping), extremely tired for more than 24 hours after exercise/activities that would normally be considered easy (a day at work?), forgetfulness, confusion, concentration problems, joint pain but no swelling or redness, irritability (I HATE this one, really...I do.), muscle aches (how do I decide if it's an ache from this or the fibro? I toss a dice *G*), muscle weakness all over or in multiple locations not explained by any other disorder (OK....maybe this is to blame for suddenly having trouble opening the windows? cause really....they were easy to open two weeks ago and EVERYTHING can't be from the fibro....) and sore lymph nodes. I have all of these.
IBS = Irritable Bowel Syndrome. I said I won't go into details on this. It's severe. I ran out of TP yesterday. We'll leave it at that. O.o
The myofascial pain syndrome has a lot of overlap to both the fibromyalgia AND the chronic fatigue. The part that differs is that, for me, my jaw and neck (and what feels like the back of my head) muscles are always rigid and taut. I have limited range of motion in my jaw and neck joints. It causes popping and clicking (LOUD) in all of my joints, especially the neck. I've noticed that I need to "pop" my neck and upper back - like they're out of alignment, a lot. I don't know if this is related, the feeling like it's out of alignment - I see a "regular" physician who specializes in these conditions in October. I plan on asking then. I'm guessing it is related.
The one that's the most annoying to me, and probably of the most concern is the neurally mediated hypotension. ( http://brendashue.tripod.com/nmh2.html) If I understand it correctly, my brain isn't talking to my heart much anymore so my blood pressure isn't being regulated as it should be. The hypotension causes the dizziness that I'm experiencing, and the feeling that I'm going to faint (and the potential that I CAN faint). I'm supposed to drink a lot of fluid and have a high sodium diet. The foods in the high sodium diet are exactly the foods that I'm not supposed to have because of the migraines. Until I get the tilt table test, my regular doctor won't prescribe anything. She put off figuring out where to get the tilt table test for weeks - I had to raise a stink over the phone. I have the appointment with the cardiologist on October 10th, and she decides if I get the tilt table. Then I go back to my regular doctor, who doesn't know what she's doing.
Under Pressure - David Bowie & Queen
Pressure pushing down on me
Pressing down on you no man ask for
Under pressure - that burns a building down
Splits a family in two
Puts people on streets
It's the terror of knowing
What this world is about
Watching some good friends
Screaming let me out
Pray tomorrow - gets me higher
Pressure on people - people on streets
She been around
Kicked my brains round the floor
These are the days it rains but it never pours
People on streets
People on streets
It's the terror of knowing
What this world is about
Watching some good friends
Screaming let me out
Pray tomorrow - high higher
Turned away from it all like a blind man
Sat on a fence but it don't work
Keep coming up with love but it's so slashed and torn
Why - Ooooh
Insanity laughs under pressure we're cracking
Can't we give ourselves one more chance
Why can't we give love that one more chance
Why can't we give love
Give love give love give love give love
Give love give love give love
Love's such an old fashioned word
And love dares you to care for
The people on the edge of the night
And love dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
Under pressure
Under pressure
Pressure
Hmmm....
Good question. Not that very many people have actually asked me. It's pretty damned incredible. The majority of my friends and family are mostly apathetic about it. (sorry people if that offends you or makes you angry to hear, as the one who's been dealing with things alone, it's true.)
I had my first symptom over six years ago - my left leg started having pretty severe pains and cramps that lasted for weeks at a time. I went to the doctor after it didn't get better and he sent me to a physical therapist - maybe my left leg was weak and needed retraining. (I dunno, my right leg never looked like it was doing all the work to me...) I went to the physical therapist who was great. The first time was a general stand and walk and turn and twist and after all that she said she thought I looked fine on the initial exam, and she didn't see anything wrong or see anything that she could do or anything I needed, but the order was for 4 appointments, so did I want 3 massage treatments? Of course I said yes. When I went in for the next treatment we both noticed something funky. Whenever she'd touch me and I wasn't expecting it, it felt almost like a shock and I'd jump a foot off the table. She noticed some other things - my reflexes were off, some were exaggerated and some not strong enough. Hmmm. We did the massage treatments and she gave me home exercises for my legs, which were constantly still cramping (but she couldn't find anything that PT treatments would help). She sent her report to the doctor and I went back to him.
The doctor at the time thought it was MS (multiple sclerosis) and sent me to a neurologist. I had a MRI of the brain and neck and as there weren't any typical signs of MS on the MRI, I was told take a pill when the pain got out of control and was sent on my way.
Within a year other things started to pop up that weren't "normal". The continual pain and cramps moved to other parts of my body, my right leg and both arms, my back and belly muscles (I joke that I don't own any but I guess I do). I started to have almost seizure-like spasms, most of the time just in my upper body. Sometimes it would just be in my arms - they'd flail out, usually just one, starting from the torso moving out in a wavelike movement. Sometimes it would be more of the body, starting at the waist/hip and moving up and across my body, across my chest and shoulder with my arm flinging and my neck twitching, making my head spasm. On a good day this would only happen once, but usually it would happen for five or ten minutes at a time. Normally it would happen at night, around 10:00 PM or so. I live alone, so people didn't see it a lot. Once or twice it did happen at work. Sometimes my legs would kick out. I tried to explain it to my doctor and they always explained it away as the twitches you sometimes get when you're falling asleep but that isn't it at all. Sometimes, rarely (thank GOD), I'd get these during the day when I was out and about. Only once when I was driving. Once when I was shooting archery - I got a bulls-eye on someone elses target. We were able to laugh that one away. *G* These weird movements have come and gone, sometimes severe and sometimes not so bad, for about five years now. Right now some of the meds I'm on are used as anti-seizure meds (although that's not why I'm taking them) and interestingly enough, my twitches are peacefully sleeping.
Back to my time-line.... The docs hmmmm'd and sent me to a different neurologist who looked at my left leg, and found that I had residual nerve damage from when I fell and injured my leg several years before all this started. Eureka! He found something! It had nothing to do with why I was there, but he felt triumphant! He said the pills I was taking for the leg pain should be enough help (I'd told him that they were only mildly adequate), and sent me on my way.
I'm not sure how much later it was, but at some point, about three or four years ago, I started to have a hard time remembering words and phrases. More than what happens "as we get older" but a lot. I have hours or days where I don't want to talk to people because I know that almost every noun that i need, I won't be able to find. Or I'll lose a specific item for an extended period of time. My favorite, partly because it amuses me and partly because it's such just odd, is that I lost the word "silverware" for I don't know how long. It felt like forever but was probably 3-4 weeks, maybe a month. I knew what it was I meant, and if I was at a restaurant I'd ask for forks & knives or utensils. I was at Red Robin one day with some people from work and "utensil"s wasn't coming to the surface right way, but "cutlery" did so I asked for that. The waiter looked at me like, "freak" and said, "You mean you want some silverware?" and I was soooo relieved! I had the word back! Because until then I really didn't know that the word was missing, if that makes sense? It was the first time that I was really AWARE that I was having trouble with word finding.
I was having other problems as well. I was always sleepy. If I didn't have to work, on the weekends I'd sleep until 2:00 or 3:00 PM, and go to bed at 10:00 PM, and during the week I'd have a hard time staying awake. That changed about six months ago. Now I'm always sleepy, but I'm lucky to get 5-6 hours of sleep a night. There were all kinds of intestinal problems that people don't want to know about (and I promise I won't share!). Every once in awhile I'd get dizzy, sometimes when I stood up or bent over, sometimes just out of nowhere I'd feel faint. I had what I called "personal earthquakes". I'd be walking and it would be like the ground would jump or like I'd miss a stair. I'd lose my balance and have to catch myself on a wall or counter, and occasionally actually fall over nothing. My immune system has been incredibly weak - I've had pneumonia several times, bronchitis and other things. I found out that my vitamin D level was the lowest my doctor had ever seen - not something to be proud of. All this going on for several years, and through it all, the one thing remained..... my muscles in constant spasm.
Then I fell last July and hurt my left knee. VERY long story short... my knee cap had been knocked out of alignment and rotated, which was causing difficulty walking, inflammation and pain. I have a knack for finding doctors and physical therapists who don't know what they were doing, so after five months of mis-treatment, I found a physical therapist who know what she was doing. My left knee and leg was in severe pain at this point. I was having to use a cane to walk, and taking pain meds daily. (They didn't really work a lot, but they took the edge off.) The new physical therapist treated me for two treatments and we could tell it was really on the mend, but my right leg started to really bother me and well frankly...it hurt. At lot. She looked at it and thought that maybe it was hurting because it had compensated for the left leg so much. She worked on it and gave it an adjustment and it felt a lot better. It felt better for a couple days, but by the time my next treatment came around it was really hurting again. My left leg, on the other hand, was doing amazing. If I'd been able to tap-dance, I'd have been tap-dancing on it. Odd...... The physical therapist checked out almost 100% healed left leg and declared it better, and worked on 95% non-functional right leg. Neither of us could really figure it out. I had some exercises to do for healed leg, she said not to do them on the right leg that was now messed up. I came back for the last visit - really weird. Hmm..I hadn't injured the right leg. Left leg was better. She couldn't find anything WRONG with it. It just HURT. She's an awesome physical therapist. She figured out what was wrong with my left knee where another physical therapist and two .....knee doctor people/one surgeon (lost the word) couldn't. But she couldn't figure out my right knee, and we both knew that I hadn't hurt it.
Everything else was starting to hurt too. My hips hurt all the time. Dang, my couch was really uncomfortable because my back and knees and BUTT hurt when I sat in it. I tried the recliner. Well it's worse there. My upper back really hurts too. All the time. Hurts sitting at work. It aches, and burns....and when I move it's really tight and pops. Sometimes it feels like someones trying to pop my kneecaps off with a dull spoon. Then it feels like someones sticking a big needle into me, like maybe a needle that's about 8" long.... like when you get a Novocaine shot, into my belly or my upper arm or my thigh. And then there are the days when there's no shot or needle feelings, but feels like there are nails being driven into my joints....and all the time my calves and thigh muscles are cramped up, not quite like a Charley horse but pretty danged close. That's a constant feeling, and the skin on my calves always feels tight too.
Oh, I didn't mention the migraines! Yea!! Migraines! I've had those for a long time, before I moved up to Oregon. They started getting worse about maybe four years ago. I can't describe a migraine. What I can say is that when things started ramping up earlier this year, it got so that on a good day .... aaaaargk. My head squeezes in and my eye sockets feel smaller than my eyes. The inside of my skull aches dully, constantly. The back of my skull, where it rests on my spine, presses down and it feels like it's compressing and needs to be lifted up about four inches. This isn't a migraine.....but a microshift to the left and it could be a migraine in a second.
The thing that's really bothering me the most isn't the most painful, but it's probably the most dangerous. It's the dizziness and possibility that I could faint at any time. I can joke around about the other stuff, even if inside I'm really wanting to cry most of the time. But the dizziness.... Not so much. It started out innocuously enough, and with stuff that I've heard a lot of people have. I started to get a little bit dizzy, for a short time, when I stood up suddenly or if I leaned over to pick things up. Then pretty much out of nowhere, I was dizzy almost all of the time. I'd reach overhead to get a plate and have to catch myself because I'd be tottering. Lean over to get a pot from a cupboard, same thing. Go upstairs? Better plan on an extra couple minutes because I'm going to need time to sit down when I get there. It's got a lot worse recently. I always make sure that I walk where I can hold on to something and have one hand free. I've lost my balance (more than just a little wobble) several times in the last few days, and have "grayed out" a couple times, but I haven't actually fainted.
I was off work for six weeks in late June and July. Mentally, I can do the work but I'm a lot slower than I was. A lot. I'm worried about keeping up with my desk. There isn't room for slack, and the office manager has showed in the past that she will do everything she can to get rid of people she doesn't like and she's made it clear that she doesn't like me. I can barely afford to live on what I bring home now, so partial pay from disability is a really scary thought.
It's late and I'm starting to ramble..... :)
I had my first symptom over six years ago - my left leg started having pretty severe pains and cramps that lasted for weeks at a time. I went to the doctor after it didn't get better and he sent me to a physical therapist - maybe my left leg was weak and needed retraining. (I dunno, my right leg never looked like it was doing all the work to me...) I went to the physical therapist who was great. The first time was a general stand and walk and turn and twist and after all that she said she thought I looked fine on the initial exam, and she didn't see anything wrong or see anything that she could do or anything I needed, but the order was for 4 appointments, so did I want 3 massage treatments? Of course I said yes. When I went in for the next treatment we both noticed something funky. Whenever she'd touch me and I wasn't expecting it, it felt almost like a shock and I'd jump a foot off the table. She noticed some other things - my reflexes were off, some were exaggerated and some not strong enough. Hmmm. We did the massage treatments and she gave me home exercises for my legs, which were constantly still cramping (but she couldn't find anything that PT treatments would help). She sent her report to the doctor and I went back to him.
The doctor at the time thought it was MS (multiple sclerosis) and sent me to a neurologist. I had a MRI of the brain and neck and as there weren't any typical signs of MS on the MRI, I was told take a pill when the pain got out of control and was sent on my way.
Within a year other things started to pop up that weren't "normal". The continual pain and cramps moved to other parts of my body, my right leg and both arms, my back and belly muscles (I joke that I don't own any but I guess I do). I started to have almost seizure-like spasms, most of the time just in my upper body. Sometimes it would just be in my arms - they'd flail out, usually just one, starting from the torso moving out in a wavelike movement. Sometimes it would be more of the body, starting at the waist/hip and moving up and across my body, across my chest and shoulder with my arm flinging and my neck twitching, making my head spasm. On a good day this would only happen once, but usually it would happen for five or ten minutes at a time. Normally it would happen at night, around 10:00 PM or so. I live alone, so people didn't see it a lot. Once or twice it did happen at work. Sometimes my legs would kick out. I tried to explain it to my doctor and they always explained it away as the twitches you sometimes get when you're falling asleep but that isn't it at all. Sometimes, rarely (thank GOD), I'd get these during the day when I was out and about. Only once when I was driving. Once when I was shooting archery - I got a bulls-eye on someone elses target. We were able to laugh that one away. *G* These weird movements have come and gone, sometimes severe and sometimes not so bad, for about five years now. Right now some of the meds I'm on are used as anti-seizure meds (although that's not why I'm taking them) and interestingly enough, my twitches are peacefully sleeping.
Back to my time-line.... The docs hmmmm'd and sent me to a different neurologist who looked at my left leg, and found that I had residual nerve damage from when I fell and injured my leg several years before all this started. Eureka! He found something! It had nothing to do with why I was there, but he felt triumphant! He said the pills I was taking for the leg pain should be enough help (I'd told him that they were only mildly adequate), and sent me on my way.
I'm not sure how much later it was, but at some point, about three or four years ago, I started to have a hard time remembering words and phrases. More than what happens "as we get older" but a lot. I have hours or days where I don't want to talk to people because I know that almost every noun that i need, I won't be able to find. Or I'll lose a specific item for an extended period of time. My favorite, partly because it amuses me and partly because it's such just odd, is that I lost the word "silverware" for I don't know how long. It felt like forever but was probably 3-4 weeks, maybe a month. I knew what it was I meant, and if I was at a restaurant I'd ask for forks & knives or utensils. I was at Red Robin one day with some people from work and "utensil"s wasn't coming to the surface right way, but "cutlery" did so I asked for that. The waiter looked at me like, "freak" and said, "You mean you want some silverware?" and I was soooo relieved! I had the word back! Because until then I really didn't know that the word was missing, if that makes sense? It was the first time that I was really AWARE that I was having trouble with word finding.
I was having other problems as well. I was always sleepy. If I didn't have to work, on the weekends I'd sleep until 2:00 or 3:00 PM, and go to bed at 10:00 PM, and during the week I'd have a hard time staying awake. That changed about six months ago. Now I'm always sleepy, but I'm lucky to get 5-6 hours of sleep a night. There were all kinds of intestinal problems that people don't want to know about (and I promise I won't share!). Every once in awhile I'd get dizzy, sometimes when I stood up or bent over, sometimes just out of nowhere I'd feel faint. I had what I called "personal earthquakes". I'd be walking and it would be like the ground would jump or like I'd miss a stair. I'd lose my balance and have to catch myself on a wall or counter, and occasionally actually fall over nothing. My immune system has been incredibly weak - I've had pneumonia several times, bronchitis and other things. I found out that my vitamin D level was the lowest my doctor had ever seen - not something to be proud of. All this going on for several years, and through it all, the one thing remained..... my muscles in constant spasm.
Then I fell last July and hurt my left knee. VERY long story short... my knee cap had been knocked out of alignment and rotated, which was causing difficulty walking, inflammation and pain. I have a knack for finding doctors and physical therapists who don't know what they were doing, so after five months of mis-treatment, I found a physical therapist who know what she was doing. My left knee and leg was in severe pain at this point. I was having to use a cane to walk, and taking pain meds daily. (They didn't really work a lot, but they took the edge off.) The new physical therapist treated me for two treatments and we could tell it was really on the mend, but my right leg started to really bother me and well frankly...it hurt. At lot. She looked at it and thought that maybe it was hurting because it had compensated for the left leg so much. She worked on it and gave it an adjustment and it felt a lot better. It felt better for a couple days, but by the time my next treatment came around it was really hurting again. My left leg, on the other hand, was doing amazing. If I'd been able to tap-dance, I'd have been tap-dancing on it. Odd...... The physical therapist checked out almost 100% healed left leg and declared it better, and worked on 95% non-functional right leg. Neither of us could really figure it out. I had some exercises to do for healed leg, she said not to do them on the right leg that was now messed up. I came back for the last visit - really weird. Hmm..I hadn't injured the right leg. Left leg was better. She couldn't find anything WRONG with it. It just HURT. She's an awesome physical therapist. She figured out what was wrong with my left knee where another physical therapist and two .....knee doctor people/one surgeon (lost the word) couldn't. But she couldn't figure out my right knee, and we both knew that I hadn't hurt it.
Everything else was starting to hurt too. My hips hurt all the time. Dang, my couch was really uncomfortable because my back and knees and BUTT hurt when I sat in it. I tried the recliner. Well it's worse there. My upper back really hurts too. All the time. Hurts sitting at work. It aches, and burns....and when I move it's really tight and pops. Sometimes it feels like someones trying to pop my kneecaps off with a dull spoon. Then it feels like someones sticking a big needle into me, like maybe a needle that's about 8" long.... like when you get a Novocaine shot, into my belly or my upper arm or my thigh. And then there are the days when there's no shot or needle feelings, but feels like there are nails being driven into my joints....and all the time my calves and thigh muscles are cramped up, not quite like a Charley horse but pretty danged close. That's a constant feeling, and the skin on my calves always feels tight too.
Oh, I didn't mention the migraines! Yea!! Migraines! I've had those for a long time, before I moved up to Oregon. They started getting worse about maybe four years ago. I can't describe a migraine. What I can say is that when things started ramping up earlier this year, it got so that on a good day .... aaaaargk. My head squeezes in and my eye sockets feel smaller than my eyes. The inside of my skull aches dully, constantly. The back of my skull, where it rests on my spine, presses down and it feels like it's compressing and needs to be lifted up about four inches. This isn't a migraine.....but a microshift to the left and it could be a migraine in a second.
The thing that's really bothering me the most isn't the most painful, but it's probably the most dangerous. It's the dizziness and possibility that I could faint at any time. I can joke around about the other stuff, even if inside I'm really wanting to cry most of the time. But the dizziness.... Not so much. It started out innocuously enough, and with stuff that I've heard a lot of people have. I started to get a little bit dizzy, for a short time, when I stood up suddenly or if I leaned over to pick things up. Then pretty much out of nowhere, I was dizzy almost all of the time. I'd reach overhead to get a plate and have to catch myself because I'd be tottering. Lean over to get a pot from a cupboard, same thing. Go upstairs? Better plan on an extra couple minutes because I'm going to need time to sit down when I get there. It's got a lot worse recently. I always make sure that I walk where I can hold on to something and have one hand free. I've lost my balance (more than just a little wobble) several times in the last few days, and have "grayed out" a couple times, but I haven't actually fainted.
I was off work for six weeks in late June and July. Mentally, I can do the work but I'm a lot slower than I was. A lot. I'm worried about keeping up with my desk. There isn't room for slack, and the office manager has showed in the past that she will do everything she can to get rid of people she doesn't like and she's made it clear that she doesn't like me. I can barely afford to live on what I bring home now, so partial pay from disability is a really scary thought.
It's late and I'm starting to ramble..... :)
I'd really like a pony though.....