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  #191 (permalink)  
Old 08-05-2002, 04:04 AM
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Pinkie Winky

Goodmorning Everyone,
It's Monday!! Today I would like to ask a Blessing for all of us to have inner peace knowing we are strong, and doing the best we can. Take each minute as it comes, don't explain to those who are ignorant of Fibro why you are like you are. You owe nobody a reason. We have each other at the click of a button to turn to for encouragement and support. This DD is tough enough without having to explain or apologize for it!! I hope each of you have a good day that is more than just tolerable. Thank you for all of the support and info you pass along to help and encourage me. By the way, I too sleep apart from my dh. Not because of him not understanding, but because he too has a dibilitating disease (Crohn's) and he is in alot of pain also. We BOTH go through the family bit. We just have learned to say "OH WELL"rfl
God Bless,
  #192 (permalink)  
Old 08-05-2002, 09:38 AM
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I understand so much of what you are feeling. The ego-shift, that the "D " word represents, and the change in how you see yourself. The "D" word, as you put it, made me chuckle.

I am in a similar spot as you, but perhaps a step or two ahead. I have decided for the sake of my children and family to fight for my "D" entitlement. I have shifted my focus from looking at it is as giving up something to looking at it gaining someting.

Granted, it was a hard shift in focus. I have not been able to work full-time since 1988, when a bad injury sparked the beginings of my fibromyalgia... I have had several surgeries, and other health problems that seemed to grow out of that original trauma. I am no longer independant. I often feel trapped by circumstances, and I can't believe this happened to ME of all people....Sound familliar?

I went from earning over $60,000 dollars to earning barely $2,000 a year in less than 2 decades. I always thought your salary was supposed to go UP not down!!!

I fought against the "D" lable bitterly, until realizing I was doing myself and my children a disservice, all for the sake of hanging onto my ego, and let me tell you, my ego wasn't doing all too well in the first place if it was tied to a $2,000 a year paycheck!

My poor husband works 3 jobs to make up the slack, and is tired and grouchy all the time. Who can blame him!? So the bottom line is I realized my ego was getting in the way of my happiness. So I hired a lawyer.

I have spent almost 20 working years contributing to social security disability insurance. Now I need to collect. I am not a failure. I am not a welfare case. I have, through unfortunate circumstances become disabled, and I am no longer able to earn a livable wage. I have tried...but my family is suffering. It is time to collect on the insurance policy I paid into all those years.

What is the shame in that? We are entitled to that. We are not scamming the government. Yes, there may be those out there that try and do that, and the folks at the SSA may treat us that way until we get to prove our cases infront of the judge...but we will prevail eventually. We will prevail because this disease, and all our co-morbid diseases are real, and painful and they rock our worlds, and destroy our days, and limit what we can do in our lives.

And there is no shame in this. Because any disability we may have does not limit WHO WE ARE. The "D" word describes my ability to work. It does not describe who I am as a person. Don't let the "D" word get you down...After all, it's not a "Dirty" word, it has way more than 4 letters. <grin>

  #193 (permalink)  
Old 08-05-2002, 09:47 AM
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YES!! I can relate to the problems with family and friends not understanding. My mother is the only one that knew from the start something was wrong with me when I started showing symptoms..She kept saying,honey you have to see a dr.about this. You are just not like yourself. At first my husband said I was just being lazy when he'd come home and the house looked as if a tornado had come through it. I'd say I'm just too tired and I hurt. Well he'd shrug it off and say well I sure hope no one comes in. One day I was feeling very tired and sick all over. so when he said that I handed him the broom.I said if you want to clean it up knock yourself out,I'm going to bed. Eventually he realized I was not "playing sick".After I was finally diagnosed and we did some research on this dd he realized how sick I am. I think the thing that really convinced him was when I went into my closet one day to find something to wear and collapsed on the floor,crying because I was too tired to get dressed. He found me there crying my heart out and helped me to bed.After that he was a lot different.He also went with me to a dr visit and she told him your wife is a very sick person. When I was diagnosed with Hep.C he seemed to really get worried about me then. Now,thank God he is really supportive and undersatnding.I think all husbands should be required to go have a talk with our drs and therapist.They need to be told by them what a horrible disease this is and how it effects our bodies.
I still have some family members that don't understand what I go through and why I can't do everything they want me to anymore.(Like I used to do)
One thing that bothers me is that I haven't been able to go to church in a long time and I miss going. My pastor used to come by to see me every week until he found out I have Hep.C. Then he quit coming.I tried to tell him it's not contagious.But I haven't heard from him in over a year now. But someone called from the church last week and said they were giving him a pastor's appreciation dinner and would we try to come. Well needless to say I wasn't there.I wouldn't have went to it even if I had been able to go.I know that sounds horrible but I feel like he turned his back on when I needed him the most.
My heart goes out to all of you who don't have the support of your immediate families. That makes it so much harder to live with this dd..

God bless all of you today.
  #194 (permalink)  
Old 08-05-2002, 12:41 PM
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Fibromyalgia, etc...


I am glad that I was able to warn you about Echinacea and its effects on us fibromites (and other related disorders). However, I have great news from a friend who is very much into nutrition! I have not checked this out yet because I just got this email from her, but the supplement Moducare is supposed to be wonderful for the immune system and it is SAFE for us to take! My friend's daughter has been allergic to many foods, plants, grass, etc. Their family doctor even said that her immune system was going haywire. Well, she has been on Moducare for almost a year and has been able to eat many things she could not touch before, as well as go many places she could not go before.

I will be checking it out for myself, but the basic info is at She orders it at either or, and says that it is not expensive.

I was so excited to see this that I jumped into this conversational thread right away so I do apologize for not checking this product out myself. However, I've known this friend for years and if she says it's good, it is.

Many blessings!

Carie A., Oklahoma City
  #195 (permalink)  
Old 08-05-2002, 12:43 PM
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Yes, you hired an attorney and you are going after the money to help support you and your children. I, for one, am really proud of you. It will be very stressful, I'm sure, but just take it one day at a time. We will be standing behind you.
  #196 (permalink)  
Old 08-05-2002, 05:51 PM
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I think the reason I may be having a hard time being accepted for disability is because I am only 35....I have worked since my junior year in high school but they were just part-time jobs up to 30 hours a week. But I really feel like that is so unfair, I can't help it I got so sick at such a young age and I can't help it that I never had a "career", I never had the need for one. But now I definitely have the need for a career or disibility (and the career would be an impossibility!)~~ I take 13 medicines in the morning and 6 at suppertime (my co-pay for medicine is $15.00-30.00 EACH!) and my insurance is $270.00 a month and will go up higher in January....I will not give the up the fight for what I need either!

BTW, I did walk 1/4 mile on treadmill today, it took me 6.38 minutes but I walked it!!
~~Pam (in NC)
wife to Bobby (17 yrs.) and
homeschooling Bobby, Jr. (12) for over 9 years
  #197 (permalink)  
Old 08-05-2002, 06:02 PM
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Hello Pam,

Good for you walking on the treadmill. Do not beat yourself up about not having a career. You have one now a husband and son, who are so happy to have you with them to be in their lives with that special care that you seem to have. Good Luck for your day and hope you have a good week. Bye now Cheryl
Sometimes when you think your all alone.

Remember, God loves each and everyone of his children.
So your never alone in my eyes either.
  #198 (permalink)  
Old 08-05-2002, 10:37 PM
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  #199 (permalink)  
Old 08-06-2002, 05:19 AM
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Hello Delores, readers, and all you wonderful ladies,

Hope your week is going along well.

Why is it that doctors see us as guinea pigs. :mad: Just because they think that women are emotional people Give us anti-depressents because it will make us feel better.

Wonder what it does to the conditions we suffer? I was taking several pills for this or that and finally decided they too were not helping me. So I stopped them all. Maybe that was not a good idea. Haven't had any side effects from not taking them so far.

The pharmaceutical companies will clean up; because they think it is important to drug the public; to make money off all of us? Why is it that they can send those rockets and shuttleds out into space? :mad: Not be able to fix innerspace or our health runs amuck?????

Well, I am done venting thanks for listening to me. Have a good week....... bye now, Cheryl
Sometimes when you think your all alone.

Remember, God loves each and everyone of his children.
So your never alone in my eyes either.
  #200 (permalink)  
Old 08-06-2002, 06:28 AM
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Hi Pamtanise!

Good for you and your doesn't matter how long it took you to walk it, just that you walked it!!!
You will be so surprised when you start to feel better! I find it helps me emotionally and physically.

You go Girl!!!;-)

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