Dare I say I think this may be a Very Good Month? Don't prove me wrong, if you know what's good for you, either!
We had a wicked awesome thunderstorm tonight. Thunder is still rattling as I write - I love it. If it weren't a Friday night, I'd get my PJs on and jump into bed, just to fall asleep to the sound of thunder. I think I sleep better when it's raining and thundering Maybe not, but only I have to think so.
Meg came over yesterday. Nice to see her, even if she only came over to change the oil in her car and steal food from our freezer. I'm on to you, Meg. We had to go to the company store today to replenish what she took! Alas, they had no whipped cream in a can!!! They finally had pudding, but no whipped cream, it's a travesty, I tell you. Reddi-Whip, that's the stuff. Last time we bought a can at the company store, the LARGE can, it was $1.50, when I saw it at Wal-Mart the same weekend it was $3.65. I knew we should have grabbed a couple last week, darn it.
Everyone is coming over on Sunday evening for dinner. We're going to cook bacon-wrapped filets, have baked potatoes, and I'll have to figure out what sort of cool, end-of-summer dessert to have. I can't believe summer is over already! Steve's cousin Cheryl sent him a quote the other day I thought was funny - Life is like toilet paper, the closer you are to the end, the faster it goes. Ain't that the truth!
Our weather is looking wonderful for next week - high's in the 70s and lows in the 50s - ahhhhh. Bliss!
The life and times of a former transcriptionist with fibro, inflammatory arthritis, and a myriad of other junk; plus 6 neurotic dachshunds, a husband, 2 kids, and a grandchild. Welcome to Chaos!
Friday, September 2, 2011
Wednesday, August 31, 2011
I borrowed this from someone else - but it defines my life too.
I’m not taking credit for this letter, I did not write it, I found it online and sent it to everyone I know to help them understand what I was going through. I wish I knew who did write it, I would love to give them the credit here on my blog! (If anyone knows, please let me know and I’ll be more than happy to post the credit!)
A LETTER FROM FIBROMYALGIA
Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!
In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.
Have a nice day!! (ROFL),
10 best things about Fibromyalgia
(from Zazzle.com amazing website of super cool products)
I save money on magazines. With brain fog, I can’t remember what I just read!
I am a cheap date. No alcohol, no dessert and I still feel drunk or hungover.
On ‘good day’s I feel wonderful. Other people need a much better day to feel that way.
I am easy to find…I’m either at the Dr’s office or at home.
I never have to make my bed because I’ll probably be right back in it.
I have acquired a great lounging/sleeping wardbrobe. I rarely get dressed as nobody ever sees me.
Disequilibrium saves money on amusement parks. I get the same sensations every time I stand up!
I feel smarter than my Doctors…all they say is ‘I don’t know’
With short-term memory impairment I can hide my own Easter eggs and Christmas presents.
Before you Judge
By fibrorelief
This is not my own article but one I’ve gotten from FMS Community at
http://www.fmscommunity.org/lettertonormals.htm and felt it should be shared because it’s so true!
There are the things I would like you to understand before you judge me…
Please know that being sick doesn’t mean I’m not human. I may spend most of my day flat on my back and I might not seem like great company, but I’m still me stuck inside this body. I worry about school, work, family and friends and I’d still like to hear about yours.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable but it will pass. I’ve been sick for for so long that I can’t afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I’m happy, it does not mean that I am well. I may be in pain and sicker than ever.
Please, don’t say, “Oh, you’re sounding better!”.
I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t mean that I can stand ten minutes, or an hour. It’s likely that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move, but with Fibromyalgia it gets more confusing.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, and the next I’ll struggle to reach the kitchen.
Please don’t attack me when I’m ill by saying, “But you did it before!”.
If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct – if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
If you want to suggest a cure, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.
If you read this and still want to suggest a cure, submit it in writing but don’t expect me to rush out and try it. If it is something new, with merit, I’ll discuss it with my doctor.
Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.
I depend on you – people who are not sick for many things but most importantly, I need you to understand me.
The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author and give credit to FMS Community and link back to the original site. Thank You.
Sha
A LETTER FROM FIBROMYALGIA
Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!
Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!
In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.
Have a nice day!! (ROFL),
10 best things about Fibromyalgia
(from Zazzle.com amazing website of super cool products)
I save money on magazines. With brain fog, I can’t remember what I just read!
I am a cheap date. No alcohol, no dessert and I still feel drunk or hungover.
On ‘good day’s I feel wonderful. Other people need a much better day to feel that way.
I am easy to find…I’m either at the Dr’s office or at home.
I never have to make my bed because I’ll probably be right back in it.
I have acquired a great lounging/sleeping wardbrobe. I rarely get dressed as nobody ever sees me.
Disequilibrium saves money on amusement parks. I get the same sensations every time I stand up!
I feel smarter than my Doctors…all they say is ‘I don’t know’
With short-term memory impairment I can hide my own Easter eggs and Christmas presents.
Before you Judge
By fibrorelief
This is not my own article but one I’ve gotten from FMS Community at
http://www.fmscommunity.org/lettertonormals.htm and felt it should be shared because it’s so true!
There are the things I would like you to understand before you judge me…
Please know that being sick doesn’t mean I’m not human. I may spend most of my day flat on my back and I might not seem like great company, but I’m still me stuck inside this body. I worry about school, work, family and friends and I’d still like to hear about yours.
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable but it will pass. I’ve been sick for for so long that I can’t afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I’m happy, it does not mean that I am well. I may be in pain and sicker than ever.
Please, don’t say, “Oh, you’re sounding better!”.
I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
Please understand that being able to stand up for five minutes, doesn’t mean that I can stand ten minutes, or an hour. It’s likely that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either. With a lot of diseases you’re either paralyzed or you can move, but with Fibromyalgia it gets more confusing.
Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything. That’s what a fatigue-based illness does to you.
Please understand that chronic illnesses are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the park and back, and the next I’ll struggle to reach the kitchen.
Please don’t attack me when I’m ill by saying, “But you did it before!”.
If you want me to do something, ask if I can and I’ll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don’t take it personally.
Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn’t you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct – if I could do it, I would.
Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something. Fibromyalgia does not forgive.
Please understand that I can’t spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness.
If you want to suggest a cure, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well. It’s because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.
If you read this and still want to suggest a cure, submit it in writing but don’t expect me to rush out and try it. If it is something new, with merit, I’ll discuss it with my doctor.
Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.
I depend on you – people who are not sick for many things but most importantly, I need you to understand me.
The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author and give credit to FMS Community and link back to the original site. Thank You.
Sha
Sunday, August 28, 2011
It was a beautiful day in the neighborhood...
Even though the weather alarm woke me up this morning with a severe thunderstorm watch until 2 p.m. it was a nice day. We had about 3 claps of LOUD thunder a little rain, and that was it. So nice. It looked like we were really going to get some rain, but it all went east of us. Sorry, Iowa.
Our weather was much better than that on the East Coast, that's for sure, with Hurriane Irene wreaking havoc all over from North Carolina to Maine. I'm glad all we have to content with are tornadoes. Okay, occasionally a blizzard or two. And yes, we are on a huge fault line, but I've only felt one earthquake in my life and that was just a small rumble that was actually centered in Western Nebraska, but hey, no hurricanes! I'm glad that as far as I know, all my friends survived just fine and hopefully no one ends up flooded out or blown away.
I was pretty sore from my journey to the zoo yesterday, but Steve was pretty good about things today. He shampooed the carpet in the bedroom and half my hobby room. Not that it did a lot of good, but it looks better. I think Ben has a mild eye infection or irritation. His right eye has been red and had a lot of goober in it lately. Found some eye ointment tonight and used that, we'll see how it goes. I hope we don't have to take him to the vet, but if we do, then we do. Pets are like kids, you have to keep them healthy.
Speaking of healthy, I think I have an infection where my wisdom tooth came out. It's been swollen ever since the tooth was pulled, but I noticed Friday afternoon it was kind of "squishy" and tonight it leaked some vile stuff, so I have to call Dr. P's office tomorrow morning. Wish me luck on that. I'm kind of freaking out since I had to sign that stupid waiver about bone infection because I've taken Fosamax. I'll feel better once he looks at it.
Mel rented a house and she's moving out on September 9th. I'm so glad for her, but worried about dad since we don't know when he'll be going into Grand Island and he'll be alone with Missy. He might as well be alone for all the good she is. If by some miracle she manages to become vertical before 1 or 2 in the afternoon, she can't cook. Plus, they won't have Mel's income to help with expenses. I wish we could hire someone to come in and be with him during the day at least, but there's no money for that. I've been trying to get him into Sarah Care or some other adult care site ever since he came home from the hospital the last time. Mel and Missy both assured me that he'd be going, but he ha yet to go. I'm not going to mention it again; and I'm not going to go out there every day to watch dad so Missy can sleep. Doesn't matter if she's awake or not, he drank the antifreeze while she sat right next to him. I'm frustrated with her anyway - what else is new? She was supposed to come home last night because Mel had to work her part-time job, but she texted Mel and told her she wasn't coming home because the twins could watch him We've only discussed umpteen times that dad is NOT the responsibility of the twins, he's OUR responsibility because he's OUR dad. Right over her head, just like everything else. Mel told her that she was moving and Missy had the gall to ask Mel if she would take Medusa with her! Of course she said she'd come over every day and let Medusa out. Right - until she had a headache or was with Ray, or Garry, or Brad, or Steve, and then poor Medusa would be lost in the shuffle and forgotten. Just like she forgets about them every weekend. I swear, if I have to listen to her cry about how her dog is her whole life I'm going to vomit. If she had moved last year when I, um, invited her to go, we wouldn't be in this mess because we could have hopefully found someone to take care of dad then and wouldn't have to go through all this now. She's a bigger pain in the ass than dad is, and she doesn't even have dementia! I'm betting she'll move back in with Garry since Ray doesn't like dogs an especially doesn't like Medusa. Or maybe she'll move in with Steve, since he was expecting her to move in when dad had to move anyway... There are times I get frustrated and crabby about some things in my life, but I'm so glad that I don't have pieces of my life scattered over the whole metro area, some stuff here, some stuff there, no bed, no place of my own or even a room to call mine. She lives like a homeless person and thinks it's funny when people say she's a nomad. I don't think it's funny, I think it's sad.
Matt called tonight. They sent a settlement offer to Hailey's "mother", but haven't heard anything back yet. I wish he would just go to court and kick her ass, but I know lawyers. Nobody wants to go to court and work for what's best for Hailey. Even if Matt wanted too his lawyer probably wouldn't. I remember my second attorney when I was trying to get custody of Matt. He was all talk about how we'd get Marty on the stand and prove this and that and the other thing. When it came right down to brass tacks he said he wouldn't go to court because we wouldn't win. Made me madder than hell then, and I'm mad now, that the system is so screwed up that you can't even try to prove a case because everyone already has their mind made up. I really worry about Hailey if her mother has her for the better part of the time. Her boyfriend is such a loser, and I think he's the one who broke Hailey's leg. She's only a baby and obviously her mother is more worried about having a boyfriend than she is about taking care of her child.
Well, going to grab some Ambien and hope it doesn't fail me tonight. Stay tuned for more episodes of My Crazy Life, or, How to Live in a Soap Opera and Still Stay Sane.
Our weather was much better than that on the East Coast, that's for sure, with Hurriane Irene wreaking havoc all over from North Carolina to Maine. I'm glad all we have to content with are tornadoes. Okay, occasionally a blizzard or two. And yes, we are on a huge fault line, but I've only felt one earthquake in my life and that was just a small rumble that was actually centered in Western Nebraska, but hey, no hurricanes! I'm glad that as far as I know, all my friends survived just fine and hopefully no one ends up flooded out or blown away.
I was pretty sore from my journey to the zoo yesterday, but Steve was pretty good about things today. He shampooed the carpet in the bedroom and half my hobby room. Not that it did a lot of good, but it looks better. I think Ben has a mild eye infection or irritation. His right eye has been red and had a lot of goober in it lately. Found some eye ointment tonight and used that, we'll see how it goes. I hope we don't have to take him to the vet, but if we do, then we do. Pets are like kids, you have to keep them healthy.
Speaking of healthy, I think I have an infection where my wisdom tooth came out. It's been swollen ever since the tooth was pulled, but I noticed Friday afternoon it was kind of "squishy" and tonight it leaked some vile stuff, so I have to call Dr. P's office tomorrow morning. Wish me luck on that. I'm kind of freaking out since I had to sign that stupid waiver about bone infection because I've taken Fosamax. I'll feel better once he looks at it.
Mel rented a house and she's moving out on September 9th. I'm so glad for her, but worried about dad since we don't know when he'll be going into Grand Island and he'll be alone with Missy. He might as well be alone for all the good she is. If by some miracle she manages to become vertical before 1 or 2 in the afternoon, she can't cook. Plus, they won't have Mel's income to help with expenses. I wish we could hire someone to come in and be with him during the day at least, but there's no money for that. I've been trying to get him into Sarah Care or some other adult care site ever since he came home from the hospital the last time. Mel and Missy both assured me that he'd be going, but he ha yet to go. I'm not going to mention it again; and I'm not going to go out there every day to watch dad so Missy can sleep. Doesn't matter if she's awake or not, he drank the antifreeze while she sat right next to him. I'm frustrated with her anyway - what else is new? She was supposed to come home last night because Mel had to work her part-time job, but she texted Mel and told her she wasn't coming home because the twins could watch him We've only discussed umpteen times that dad is NOT the responsibility of the twins, he's OUR responsibility because he's OUR dad. Right over her head, just like everything else. Mel told her that she was moving and Missy had the gall to ask Mel if she would take Medusa with her! Of course she said she'd come over every day and let Medusa out. Right - until she had a headache or was with Ray, or Garry, or Brad, or Steve, and then poor Medusa would be lost in the shuffle and forgotten. Just like she forgets about them every weekend. I swear, if I have to listen to her cry about how her dog is her whole life I'm going to vomit. If she had moved last year when I, um, invited her to go, we wouldn't be in this mess because we could have hopefully found someone to take care of dad then and wouldn't have to go through all this now. She's a bigger pain in the ass than dad is, and she doesn't even have dementia! I'm betting she'll move back in with Garry since Ray doesn't like dogs an especially doesn't like Medusa. Or maybe she'll move in with Steve, since he was expecting her to move in when dad had to move anyway... There are times I get frustrated and crabby about some things in my life, but I'm so glad that I don't have pieces of my life scattered over the whole metro area, some stuff here, some stuff there, no bed, no place of my own or even a room to call mine. She lives like a homeless person and thinks it's funny when people say she's a nomad. I don't think it's funny, I think it's sad.
Matt called tonight. They sent a settlement offer to Hailey's "mother", but haven't heard anything back yet. I wish he would just go to court and kick her ass, but I know lawyers. Nobody wants to go to court and work for what's best for Hailey. Even if Matt wanted too his lawyer probably wouldn't. I remember my second attorney when I was trying to get custody of Matt. He was all talk about how we'd get Marty on the stand and prove this and that and the other thing. When it came right down to brass tacks he said he wouldn't go to court because we wouldn't win. Made me madder than hell then, and I'm mad now, that the system is so screwed up that you can't even try to prove a case because everyone already has their mind made up. I really worry about Hailey if her mother has her for the better part of the time. Her boyfriend is such a loser, and I think he's the one who broke Hailey's leg. She's only a baby and obviously her mother is more worried about having a boyfriend than she is about taking care of her child.
Well, going to grab some Ambien and hope it doesn't fail me tonight. Stay tuned for more episodes of My Crazy Life, or, How to Live in a Soap Opera and Still Stay Sane.
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