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Topic : 1.Diabetes? FMS? CFS? Chronic PAIN? Your WLC Home

Number of Replies: 547
New Messages This Week: 0
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Created on : Wednesday, July 06, 2005, 01:01:07 pm
Author : dataimport
For those of us who struggle with Chronic PAIN, DIABETES, FIBROMYALGIA, Chronic FATIGUE, or who take MEDICATIONS that work against your efforts to exercise or lose weight, this group is for you. Please join in and share your struggles and your knowledge. We need and can provide that special kind of understanding, empathy and help that traditional groups do not.

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November 4, 2006, 5:56 pm CST

I want my old self back.

Hi Chronic Pain board -

 

In December of 2005 I was diagnosed with mono.  I never seemed to get back to my old self.  The pain would not leave.  I kept going back to my doctor without any results.  He kept saying I was depressed due to a recent custody battle.  I was still going through so much pain that I felt like I was dying.  I finally went to diagnoseme.com and answered 500 questions to see if I could get any answers.  It came up with Fibromyalgia.  My doctor told me I did not want that diagnosis on my record because it is a broken brain disease.  When I still didn't get any better, my doctor finally said it was fibromyalgia.

 

I have been back for mono tests which keep coming up positive because I can not get enough sleep.  I am constantly saying, "I'm tired."  I was on short term disability for Mono.  But they only allowed me two weeks to get better.  I am currently working 35 hours per week.  I have no sick time or FMLA time left.  And I have been denied for the second time on continuing my short-term disability.  Their response is that mono doesn't last this long.

 

My husband has been dealing with this okay.  He gets frustrated about the messy house.  I could use more rubs.  My kids are totally on left field.  My mom teters on supporting me and being mean.  My employer really doesn't understand.  I am on the verge of being fired.  That adds more stress to my life and causes my symptoms to be even worse.

 

There are days I just don't want to live with this anymore.  I can't count the tears I have cried over pure frustration.  I can't even do the things I used to enjoy.  I get so stressed just going into a parking lot and thinking about walking into a store.  My legs do not function the same anymore. 

 

Taking a shower is tough.  I have to nap after I'm done.  I don't drink, but I feel like I wake up hungover on a daily basis. 

 

Right now my biggest frustration is everything my family has lost out on with my illness and that my short term disability insurance is ignoring my diagnosis.  I pay for that insurance, and my family shouldn't have to suffer almost losing our home because I am too ill to work.

 

There are so many days that I don't know how I'm going to make it to work.  I cry at my desk.  And the pain is unbearable.  My body feels like a giant bruise.  Every little touch is so painful.  Thank goodness my doctor has been liberal with pain medicine. 

 

I see old people with more energy than me and it's so frustrating.  When I walk in the door from work, my kids are so excited to see me, but I go right to my room and lay down.  They want to tell me about their day, but I'm so exhausted that I can't listen. 

 

Once in a while, I will have a good day or even a good couple of days.  I start thinking, "Maybe I don't have anything wrong with me!!??"  Then there will be a weather change and I'm back in bed.

 

I wish there was a test that could diagnose my condition. 

 

Cheryl

 

 
November 7, 2006, 1:17 am CST

Used to

Quote From: ladonna_k

Or, have dystonia?
Hi, It has been quite a while since I was on line here. But I saw your post and thought I would answer.

I was diagnosed with early onset Alzheimer's 6 years ago - but have since been able to counter that initial diagnosis. I was only 42 when I was diagnosed by my rhumatologist. Fortunately there were several things that I could do to reverse the symptoms, one of which was to start using a C-PAP machine at night.

I haven't heard of anyone on this board with early onset Parkinson's, but I sure can empathize with you if that is what you are going through.

Write back,
Karen
 
November 7, 2006, 1:40 am CST

Welcome Cheryl

I sure  know what you are going through. I was diagnosed with Fibro  about 7 years ago and for the first year or so I cried every time I  had to see my rhumatologist because just seeing her made me realize how devastated I was having this horrendous illness. 

I haven't heard of a Dr. calling it a broken brain disease but I sure would like to break into his brain and educate him a little about fibromyalgia. It has nothing to do with a "broken" brain. That is paramount to saying it is a mental illness. I am a psychologist (and used to be a nurse) and I personally understand that it is in fact a medical illness, not a mental one.

I too was diagnosed shortly after having mono. Mono is caused by the Epstein Bar virus and for some people the virus stays in the body forever, causing Fibromyalgia and/or other immune deficient diseases.  When I was first diagnosed most Dr.s thought it was caused by car accidents or another physically traumatic event. I even had a clergyman tell me that I couldn't have fibro because I hadn't been in a car accident. Now medical science is beginning to understand that it is an illness that has been effecting  the population like wildfire.

There seem to be so many illness' that used to be fairly rare (like Lupus) that are now on the increase. Autoimmune diseases seem to be particularly rampant.  So don't let anyone tell you that it is all in  your head.  It isn't!

Like you, my house gets messy and stays that way sometimes. I just hire Merry Maids once a month to help me out. Thankfully my husband is understanding about my limitations. My kids are too, although they worry about the pain meds that I take sometimes. They are adults now and that makes it easier to understand. Having little children who still depend on you emotionally and physically can be really difficult for everyone. 

After about 2 years my rhumatologist told me that she wished I could quit my job (50+ hours a week plus late night emergency calls), move to the country and get a dog. I laughed and said "I wish..."  But several months later we did just that. I took a year off work and then when I started feeling better I started working one day a week; now 2. But I was lucky that I had the kind of job that allowed me to do that.

Is there anyway that you could work from home?  I know, most people can't, but my son who is a software engineer was just diagnoses with autoimmune liver disease and is now starting to work from home and it has made a huge difference in his life.

Anyway, I really hear your frustration. This board is a place where you can interact with other people who have smiler frustrations, regardless of what difficulties they are having.  Hope to hear from you again.
Karen 
 
November 12, 2006, 9:50 pm CST

My Dr. says fibromyalgia doesn't exist

Quote From: wildjoy1

I sure  know what you are going through. I was diagnosed with Fibro  about 7 years ago and for the first year or so I cried every time I  had to see my rhumatologist because just seeing her made me realize how devastated I was having this horrendous illness. 

I haven't heard of a Dr. calling it a broken brain disease but I sure would like to break into his brain and educate him a little about fibromyalgia. It has nothing to do with a "broken" brain. That is paramount to saying it is a mental illness. I am a psychologist (and used to be a nurse) and I personally understand that it is in fact a medical illness, not a mental one.

I too was diagnosed shortly after having mono. Mono is caused by the Epstein Bar virus and for some people the virus stays in the body forever, causing Fibromyalgia and/or other immune deficient diseases.  When I was first diagnosed most Dr.s thought it was caused by car accidents or another physically traumatic event. I even had a clergyman tell me that I couldn't have fibro because I hadn't been in a car accident. Now medical science is beginning to understand that it is an illness that has been effecting  the population like wildfire.

There seem to be so many illness' that used to be fairly rare (like Lupus) that are now on the increase. Autoimmune diseases seem to be particularly rampant.  So don't let anyone tell you that it is all in  your head.  It isn't!

Like you, my house gets messy and stays that way sometimes. I just hire Merry Maids once a month to help me out. Thankfully my husband is understanding about my limitations. My kids are too, although they worry about the pain meds that I take sometimes. They are adults now and that makes it easier to understand. Having little children who still depend on you emotionally and physically can be really difficult for everyone. 

After about 2 years my rhumatologist told me that she wished I could quit my job (50+ hours a week plus late night emergency calls), move to the country and get a dog. I laughed and said "I wish..."  But several months later we did just that. I took a year off work and then when I started feeling better I started working one day a week; now 2. But I was lucky that I had the kind of job that allowed me to do that.

Is there anyway that you could work from home?  I know, most people can't, but my son who is a software engineer was just diagnoses with autoimmune liver disease and is now starting to work from home and it has made a huge difference in his life.

Anyway, I really hear your frustration. This board is a place where you can interact with other people who have smiler frustrations, regardless of what difficulties they are having.  Hope to hear from you again.
Karen 

     I ask my Dr. if I could possible have fibromyalgia and he said nope. That's a "nothing disease"  that you just think you have the pain. He says my problem is that I'm extremely obese ( I hate that word) and when and if I ever get around to loosing 150 pounds then my joints will stop hurting and swelling. I'm sure that may happen but in the mean time he has me on all these medication that cause fluid retention and weight gain. Dr. Phil says says something about adjusting to it. (can't remember exactly) I don't know how to adjust to carrying around 250 pounds on this 115 pound frame.  There has to be a way to get off this merry-go-round and get back to my health 115 pounds. 

 

     Is it me or is it stupid to give someone pills for depression that make them gain weight when they are depressed mainly because they are over weight and hate the way they look. 

 

    Because of the extra weight I am now Type I I diabetic, have thyroid disease, trouble breathing, can't walk over a block with out resting. I know it's bad for me but I sometimes go for several days with out eating. I'm just not hungry when I start to get dressed and can't get my clothes. Then when I look the  mirror to brush my hair I get physically ill and end up taking a pain pill or 2 and going back to sleep. sleeping people don't eat or care that they are fat as a house.

     My family is no support they say I'll never lose the weight one time then another time they say I can lose it if I try.  I do realize I'm doing this to myself. I never had any weight issues until I stopped smoking 3 years ago.  Since then I went from 130 to 250. funny thing is I was never depressed when I was smoking,, I was slim and trim and liked myself, being single I dated a lot !!!!!!!!!. When I gained the weight I lost myself. I know somewhere under all this darn blubber I'm still here, just to much disgusting fat to find me.

     Well , here I am again on my petty pot where all you get is a ring around your butt if you stay to long so before I get that I'm going to go back to bed. Before I go is there anyone from the St. Joseph, Missouri Area here?

     Ann

 

 
November 17, 2006, 7:09 am CST

good morning ladies!!

 

hello there i use to post on this board many moons ago!!

 

 well anyways for those who i use to exchange posts with helllooo yet again.

 

 im lookin to join the boards again for support ive been struggle for the last few months and need to get my butt in gear and stay away from the sweets.

 

although my weight has come down since i last posted here i still struggle with choices when it comes to sweets( i still have the love for sweets) although fruit is my best friend im going to need support threw the holidays.

 

 i hope you all have a healthy day and remember you are what you eat!!

 

trish(aka walkin women)

 

399/225/160

 

i did get down to 214 but as i said i still struggle with me sweets!!! focus focus on health!

 

 
November 18, 2006, 1:12 pm CST

hello again!!

 

 anybody somebody???? lol

 

 trish keepin the faith

 
November 27, 2006, 7:04 pm CST

Sorry I have been MIA -- been crazy here and today don't feel well

but wanted to tell you all that Dr. Phil's show on Friday, December 1st (this week) will finally be on the topic of weight...here is the explianation that I received via email:

 

"Friday
Weighty Issues
Do you ever look in the mirror and think, "How did I get this big?" For Angelique, 28, her compulsive eating is becoming deadly. She is morbidly obese at over 500 pounds, is afraid to go to restaurants because she says she'll break chairs, has to sleep sitting up, and her mother is raising her daughter because Angelique is too big to care for her. How is Angelique literally poisoning herself? Robert Reames, trainer and nutrition expert, makes a surprise visit to Angelique's house to clean out her cupboards and get her started on her weight-loss journey. Then, DeeDee weighed 750 pounds when she first appeared on Dr. Phil. It took five men, a van equipped with a special lift, a motorized wheel chair and multiple oxygen tanks to get her to the stage. Have things changed for her, and are her children still trapped in her web of guilt? And, Jennifer lost 162 pounds but was so ashamed of her body because of excess sagging skin, that she could barely look in the mirror. Dr. Phil arranged for her to meet with top Beverly Hills plastic surgeons. Did surgery change Jennifer's view of herself? If you're worried that you're weight is spiraling out of control, don't miss this show!"

 
December 14, 2006, 10:01 am CST

Guilty as charged

I too have been swamped and have neglected the board lately. I'm hoping that after the first of the year it picks up again so we can have daily chats like we used to. 

My son - the one with liver disease - has been getting worse again lately and that has kept me away from home a lot. I go to the Bay Area for several days each week to make sure he is doing alright and to make sure he is eating right. I take him to his Dr. appointments and grocery shopping. I can't tell you how difficult it is to have an ill child - even when that child is an adult. I have been battling depression for a few months now because of my worry for him. And consequently my immune system is shop, so i have often been sick myself. When I'm sick I can't help him, because getting a cold could kill him, so I stay away until I'm no longer contagious.

Luckily he is still able to work - so far - but he can't work a full day anymore due to extreme exhaustion. Not only is he dealing with liver disease, but the prednisone he has to take has caused him to develop diabetes and osteoporosis. He is only 29.

My grand-baby on the other hand is the cutest thing ever. I can't wait to see her again this weekend. They will be here until after Christmas. Her daddy, my other son is performing all over the united states now in his barbershop choir and quartet. He is having a blast.

Anyway, I have been learning how to blog and I have started 5 blogs related to mental health. My kids got me started on it as a way to help me with my depression and now it has really turned into something fun.  I have also revamped my website (www.psych-net.com) and it is looking much better these days. I still have some work to do on it like updating information and fixing my test and Quiz pages but that should happen over the holiday.  I'll post a blog from last week here so you can see what it is all about.

Trish and all, Really nice to hear from you and to see that you are all still hanging in  there.

Take Care,
Karen
 
December 14, 2006, 10:09 am CST

My "Raising Teens" Blog

 DECEMBER 5--A South Carolina boy, 12, was arrested Sunday morning after his mother called police to report that he had unwrapped a Christmas present without her permission. The police charged the juvenile with petty larceny. The boy's mother, 27, said that she hoped his arrest would serve as a corrective to disorderly behavior at school and home.

EDMOND, Okla. - Tasha Henderson got tired of her 14-year-old daughter's poor grades, her chronic lateness to class and her talking back to her teachers, so she decided to teach the girl a lesson. She made Coretha stand at a busy Oklahoma City intersection Nov. 4 with a cardboard sign that read: "I don't do my homework and I act up in school, so my parents are preparing me for my future. Will work for food."

Each generation seems to have spawned a few new parenting styles that seem new, innovative or just plain different than previous generations. Sometimes these unusual parenting styles make the news because they create controversy and debate. Recently I read about a minority of parents who believe that children themselves should be allowed to make all of their own decisions including weather or not they go to school, what they eat, when they sleep. These parents believe that by raising their children with no punishment and no rules that they are raising "free thinkers." Twenty years from now the research done on the outcome of such parenting will be interesting to say the least.

<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://bp1.blogger.com/_4ben5WBXMic/RXk5TKFiooI/AAAAAAAAABM/wprsJ4tb6no/s1600-h/teens.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;" src="http://bp1.blogger.com/_4ben5WBXMic/RXk5TKFiooI/AAAAAAAAABM/wprsJ4tb6no/s320/teens.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5006095462086910594" /></a></span>Parents make decisions about how to raise their children everyday. Even refusing to make a decision is in fact making a decision, because either way the child is reared in a particular style that is created in the home. One thing that has been researched and reported on since the beginning of time is the fact that children, teens especially, learn more by their parent's examples than from their words.

For instance, in the 80's it was common to hear young adults claim that instead of raising children in a particular religion, they were going refrain from teaching any religious theme, and instead, let the child choose for themselves. It was nice sounding rhetoric for people who didn't want to commit themselves to religious beliefs, but it didn't do what they claimed it would. Instead, children who were raised with no religious training grew up to believe that they had no need for it. So instead of "choosing for themselves," they chose as they were shown - "nothing."

<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://bp3.blogger.com/_4ben5WBXMic/RXk4uqFionI/AAAAAAAAABE/h8J8QpyfxII/s1600-h/sm+angreteen.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;" src="http://bp3.blogger.com/_4ben5WBXMic/RXk4uqFionI/AAAAAAAAABE/h8J8QpyfxII/s320/sm+angreteen.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5006094835021685362" /></a>Our children learn how to live by what we show them, what we infer to them and what they sense from us. Taking no disciplinary stand at all will result in children who are undisciplined. Over reacting and over protecting our children will produce teens who are so eager to make their own way that they explode into the world unprepared and often, rebellious. Parenting through guilt techniques creates weak minded children who grow to become un-driven adults. Parenting through violent techniques will produce children/adults who are violent minded, who learn to turn off their feelings and who may become sociopathic, unable to feel empathy for others.

So the debate roles on. We can criticize others for the ways they discipline their teens, and sometimes criticism is deserved, but more likely it is our own parenting techniques that we need to focus on. None of us are perfect parents, but all of us have room for improvement. And most of all, our teens need us to be parents, not their friends. They need the structure they detest and the quality family time they roll their eyes at. They need positive reinforcement and consistent consequences. Parenting a teen can be difficult, but if you put your whole self into doing it the best you can, the rewards will make it all worth while.
 
December 14, 2006, 10:10 am CST

oops, try it again...

DECEMBER 5--A South Carolina boy, 12, was arrested Sunday morning after his mother called police to report that he had unwrapped a Christmas present without her permission. The police charged the juvenile with petty larceny. The boy's mother, 27, said that she hoped his arrest would serve as a corrective to disorderly behavior at school and home.

EDMOND, Okla. - Tasha Henderson got tired of her 14-year-old daughter's poor grades, her chronic lateness to class and her talking back to her teachers, so she decided to teach the girl a lesson. She made Coretha stand at a busy Oklahoma City intersection Nov. 4 with a cardboard sign that read: "I don't do my homework and I act up in school, so my parents are preparing me for my future. Will work for food."

Each generation seems to have spawned a few new parenting styles that seem new, innovative or just plain different than previous generations. Sometimes these unusual parenting styles make the news because they create controversy and debate. Recently I read about a minority of parents who believe that children themselves should be allowed to make all of their own decisions including weather or not they go to school, what they eat, when they sleep. These parents believe that by raising their children with no punishment and no rules that they are raising "free thinkers." Twenty years from now the research done on the outcome of such parenting will be interesting to say the least.

Parents make decisions about how to raise their children everyday. Even refusing to make a decision is in fact making a decision, because either way the child is reared in a particular style that is created in the home. One thing that has been researched and reported on since the beginning of time is the fact that children, teens especially, learn more by their parent's examples than from their words.

For instance, in the 80's it was common to hear young adults claim that instead of raising children in a particular religion, they were going refrain from teaching any religious theme, and instead, let the child choose for themselves. It was nice sounding rhetoric for people who didn't want to commit themselves to religious beliefs, but it didn't do what they claimed it would. Instead, children who were raised with no religious training grew up to believe that they had no need for it. So instead of "choosing for themselves," they chose as they were shown - "nothing."

Our children learn how to live by what we show them, what we infer to them and what they sense from us. Taking no disciplinary stand at all will result in children who are undisciplined. Over reacting and over protecting our children will produce teens who are so eager to make their own way that they explode into the world unprepared and often, rebellious. Parenting through guilt techniques creates weak minded children who grow to become un-driven adults. Parenting through violent techniques will produce children/adults who are violent minded, who learn to turn off their feelings and who may become sociopathic, unable to feel empathy for others.

So the debate roles on. We can criticize others for the ways they discipline their teens, and sometimes criticism is deserved, but more likely it is our own parenting techniques that we need to focus on. None of us are perfect parents, but all of us have room for improvement. And most of all, our teens need us to be parents, not their friends. They need the structure they detest and the quality family time they roll their eyes at. They need positive reinforcement and consistent consequences. Parenting a teen can be difficult, but if you put your whole self into doing it the best you can, the rewards will make it all worth while.
 
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