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broken Posts: 9446
Group Leader
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It was brought to my attention something I really hadnt thought about.. I am always worried exspecially of scarying our newbies how bad we do get and feel when we have had fibro for so long..I worry that knowing the shape I was in when I desperatly found mdj that others felt the desperation as I did.. I know we all have diffrent pain levels and handle pain diffrently, but as bittersweetlife had told me she would have financially have done things diffrent.. so I ask what would you have done diffrent knowing now what you didnt know then in hopes we can help the newbies along we all have alot to give if one gets the help then some of this suffering is worth it..
remeber I am not a doctor I just say what I think
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bittersweetlife
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I was diagnosed with FMS in 1997. My family doc who is a board certified internal medicine physician, made it seem like I would have some aches and pains-probably for the rest of my life. No big deal, it happens to lots of people. O.K. ............... About 6 or so yrs ago, my fibro started progressing very rapidly. I went from taking a darvocet every now and then to needing much more pain relief. I started complaining to my doc, and rheumy that I couldn't take the pain any longer. Shortly after, I was diagnosed with several other fibro related diseases. My illnesses progressed rapidly until I could no longer work, or function normally in day to day life. If I would have known that my current condition was a possibility from this "syndrome" that I was diagnosed with 13 yrs ago, I would have structured my retirement accounts differently, and saved more of my disposable income. When you apply for SSD, there is a period of time that you may not have an income, and still have to pay for your medical expenses and medications. Having more money on hand would have surely made life a little easier. In addition, since I can no longer work, I will need money to live on for a prolonged time since not working now is like a "very early retirement". I also would have traveled more. Traveling now is not as much fun. When you have to take your "pharmacy" with you, and have problems walking, and sleeping.....It makes being in strange places a challenge. I hope this discussion that broken has opened will help many of our group members. Remember, this information is not meant to frighten anyone, its meant to educate our fellow fibromites. Post edited by: bittersweetlife, at: 06/17/2010 10:25 AM |
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STRENUBA Posts: 142
Member
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I was diagnosed with firbo in 1988 by my long time doc and now hes retired and I have been trying to get SSD since 2004! If not for my family and friends I would be destitute and probably dead by now. I feel so lucky for them. |
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mindyrp Posts: 299
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First of all, I almost posted this yesterday, but didnt want to discourage anyone. Sometimes I feel as if knew then what I know now, I wouldnt have married. Does anytone else feel so guilty that the person your husband chose to marry is so different? It isnt fair to him. My husband deserves better. He is good to me and I LOVE HIM TO DEATH, I just feel guilty for being and "old hag" sometimes. But on the up side, when I feel good, I give him my all! Ofcourse I am NOT saying if you have FM you shouldnt get married, I want to know if anyone else feels that way too. Thanks guys for all you do. LOVE ALL, mindy Mindy |
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STRENUBA Posts: 142
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I know, I had to give up on a 20 year relationship because of my fibro. Its hard to meet someone elses needs when you try to keep the pain under control ALL THE TIME. |
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broken Posts: 9446
Group Leader
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we posted this for the reasons of sharing I think if to you the guilt for having gotton married is a very true feeling..I wonder at times if my husband knew what life would be like it would be diffrent.. for me the financial thing is a biggie that really needs to be thought about for those who have just began this struggle..but besides that, I would have enjoyed my family more funny how fast time has gone by and in Dec. I'll be a grandma I just hope I can be a good one we all have alot to give if one gets the help then some of this suffering is worth it..
remeber I am not a doctor I just say what I think |
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gheersmom
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Broken first of all let me say about you being a grandma in December, knowing you as I do and conversations we have had, you are going to be an AWESOME grandma. Oh and what the babies parents call spoiling is their lack of understanding what "deserving" means when it comes to our grands. So trust me, even with the pain I have my grands are a bit "overindulged" Hard to believe I know. As for what I would have done differently..I really would have rethought adopting my youngest. I dont want people to think that is awful or hateful. I think she could have had a better more funfilled life. At the time I thought I was doing the right thing. She deserves someone who can go to the park, go on field trips, and a mommy who can provide better and not hurt so much all the time. It is so very hard not to be able to work and provide or go out and be social. My goodness all that involves wearing clothes that are going to hurt, remembering things that were so simple and now I have to ask a 5 year old what we want at WalMart. Bless her heart she thinks it is a game. This has also cost me a realtionship and possibly someone to help me raise the little one better than I am now. Guilt.. OH YEAH.. regrets OH YEAH.. Depressed Yep.. and I do not like it at all. I want my life and career back and each day that goes by makes me feel a little more worthless and little more of a burden to my friends and family.   Post edited by: gheersmom, at: 06/17/2010 08:20 PM |
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MissStacey Posts: 14843
VIP Member
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Nobody else has to but these are things I have saved and live by.  I suffer from Rapid Progressive MS, Lupus, Fibromyalgia, Epilepsy, Migraines, Neuropathy, IBS, Narcolepsy, Arrythmia, Arthritis and too much more complete list on profile.
"Just because we have the right to disagree with a person, does NOT give us the right to disrespect that person."
I'm not currently active due to many personal and medical issues. I will not be participating in MDJ for awhile, my thoughts and prayers are with everyone. I hope everyone is well and I appreciate all of the thoughts, kind words and messages. I have tried to respond as much as possible and apologize if I have not gotten back to everyone. Love & Hugs, Stacey |
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gheersmom
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Thanks Stacey.. Those are good sayings.. |
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puppymom2
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I would like to say that I would have accepted the fact that I had fibro early and that I had applied for SSD sooner but in reality you have to do things and accept things when you are ready. I would have however broken off ties with my mother sooner. She has many issues which she will not address and she is very toxic. I did not need the stress she caused during the first two years I was dealing with fibro and she kept telling me I was making it all up in my mind. I kept avoiding the issue and I think it would have been less stressful to have cut ties with her two years earlier when I had more good days. Of course that would have been smart even if I didn't have fibro. Mindy I also feel guilty that I am putting my husband thru all this but it could just as easily be he that is sick and I would not want him to feel guilty. Traci |
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