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KRISTYLH7's Photo KRISTYLH7 SparkPoints: (2,040)
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1/31/12 3:23 P

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I agree with you, throwing away a 32 year old marriage is not the answer...I hope that there was nothing in my comment made you think that.
It is such a common misconception of those who do not have Fibro to just brush it off because we look normal, and so weird because one day we can do something and then the very next day we are unable to do that very same thing.
It makes us feel very sad at times because we are not given the same respect as those who have other more visible, common problems.
I have also found that it is the people who think way to highly of themselves that are so blinded to the plight of others. Treat yourself kindly and carefully ok? Maybe "someday" your husband will read or hear something that will open his eyes and ears. We can only pray!

Take Care Now! Kristy


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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/31/12 2:27 P

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Decided that I need to just "get over it" and go to my doctor anyway. It hurt but I KNOW that she is helping me whether my husband agrees with me or not. Thanks to all of you for your advice and words of encouragement and your friendships. My husband now acts like he didn't say anything about my doctor/condition. Oh well. We have been married 32 years and I am not willing to throw that away for some rude and mean words that came out of his mouth.
Thanks again. Together, we can help each other! Cindy
p.s. I know none of us will probably ever meet but I look forward to getting on here as much as I can and seeing your posts. Love you guys!

Edited by: CWPRAISINJC1 at: 1/31/2012 (14:28)
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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
1/23/12 3:12 A

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Terrific bunch of people here, I agree! emoticon

"The real secret of success is enthusiasm..." Walter P. Chrysler said it, I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called t


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BEKAHBELL's Photo BEKAHBELL SparkPoints: (7,387)
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1/21/12 10:13 P

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I'm sorry :( I don't think my husband understand the severity of what I am going through. I try my best to get throught the day, but there are days when I know he's frustraited with what doesn't get done. I had him read an article once, but I don't know if that helped. I don't know if he even believes I have it, since I haven't been officially diagnosed. I reached out to some friends that I knew had it when I first felt like I did and they have been a great help and support. well, some of them. I think some are sick of talking about it. I was thinking of starting a facebook group. The ones that are out there seem so big, I don't know that I would connect. and I would love to really talk to people about it, not just complain, or post what new medication they are taking. I want to do things to feel better! And I would love to have some people that are of the same mindset. This group has been great with that!!

Bekah :o)



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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/20/12 8:18 P

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Is that a rottie in your picture or a lab?
I was bless with a sense of empathy for people. I guess not everyone has that.

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ROTTLADY's Photo ROTTLADY SparkPoints: (43,095)
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1/20/12 7:12 P

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We have each other and all know what it is like.
We often can't always put what we are feeling into words, if you didn't feel it would you understand what this disease is like?

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MILLYMOLLY99's Photo MILLYMOLLY99 Posts: 632
1/20/12 5:32 P

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How awful to have those closest and dearest to you not believing that you're sick! It must be very upsetting and frustrating for you, especially when you really are sick. The only thing to do is to plod on and try to ignore their attitude. Do your best, but be sensible, don't overdo it and stick to your guns if you are encouraged to do more than you can. Hopefully your confidence and acceptance of your condition will eventually convince them! All the best.
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'Just keep swimming, just keep swimming...'

Time Zone: US EST + 14 hours; GMT +10


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SHIHJABO's Photo SHIHJABO SparkPoints: (25,000)
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1/20/12 2:15 P

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Whoa!!! Kathy, I reread the spoon theory just now and also devoured most everything else on that website, watched 5 videos and emailed 4 friends telling them to read the spoon theory. WOW! Wow! Wow! The videos are incredible She also read the spoon theory on one of her sites.
Not only do I have Firbro etc but I did test positive for Lupus or RA a year or so ago. My last MRI said I gave severe arthritis, I don't have an official diagnois on the Lupus because that would label me as Pre-existing for insurance BUT everything indicates a 981/2 % certainty of it. I have a friend who gets so angry when I tell her it is probably Lupus because she says I am self diagnosing. My eye doctor and dentist both, within the last week, have said there is a 50% decrease is moisture levels in my eyes and mouth. . . I knew that. . .but it's official now. I am showing major Raynauld's symptoms.etc. But don't have the expensive diagnosis of all that's going on because I look so normal. I think my husband finally has gotten it and is being very supportive. . . but don't you know what he's going to be watching some videos tonight and so is my friend. .. if she wants to remain a friend.
I am so sorry. . , and I have forgotten you name, honey. . , the one with the husband's disbelief, but we do understand where you are coming from with the disbelieving family
members. Please try to get them to visit the spoon web-site.

I had a total meltdown this past Mon with the culmination of all the diseases and more diagnosis thrust upon me. I just lost it. I couldn't quite crying. I finally got out of the house and found a friend who would listen and take me seriously. It was just getting too dangerous emotionally. . . I think we've worked out some good plans.

I know I'm blabbering, but these illnesses are so. . .frustrating and probably the biggest curse words in the world are, " but you look okay to me. You don't look sick.
change your attitude. Grin and bear it. . . ahhhhhhhh. Sometimes I just want to smack people in the face and say wake up! You are so blessed. If you care, read this!!! Learn, don't judge me. I truly am fortunate to have a husband that has finally gotten it. I feel sorry for him, actually because he is doing so much for me and he never complains. Right now, my biggest frustration is with friends?????? I want them to know how valuable my spoons are and getting showered and dressed and make up take six of them. It's amazing how much you can accomplish in PJ's!!!!!!!

Well, I guess I've kind of gotten into a vent mode. I really do try to be an encourager, but sometimes I'm flinging spoons. It's been that kind of week. But, we can do this!!!
Big hug to all of us. . . big smile too emoticon emoticon

Blessings, Barb

Edited by: SHIHJABO at: 1/20/2012 (17:48)
The scale doesn't determine who I am. It is made of metal, nuts and bolts. It has no feelings, no compassion.

My worth comes from who I am in Christ Jesus. I mess up too much on my own, but I can do everything with God's help.
CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/20/12 1:49 P

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Do you google to find it or how do you find a support group?


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DIANAPHOENIX's Photo DIANAPHOENIX Posts: 354
1/20/12 1:47 P

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Do what you're doing - finding support from the people who can give it. In this case, your spark community. I found a fibro support group that had monthly meetings (in Sacramento), and you may have one in your community. It was so comforting to hear people say what I had been feeling, and helped me feel less alone.

I have three family members with fibro, and we can share stories and even laugh about some of our experiences.

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/20/12 1:38 P

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Mine just came out of the woodwork. My daughter just told me that they have "tippy toed" around me for the past 3 months and they are tired ot it! Three months is nothing with this, right? I feel like I am crying out for help...I am so sad by this. How do you all handle the non support? emoticon

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SASSYTHING52's Photo SASSYTHING52 Posts: 10,771
1/20/12 1:33 P

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think it happens to alot people

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DIANAPHOENIX's Photo DIANAPHOENIX Posts: 354
1/20/12 1:32 P

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Kathy, Thanks so much for the Spoons article - I've posted it to my fb page (to help my family with lupus/fibro, and to hope some family read it). After 20 years, the healthy part of my family still doesn't really understand. And you're right - they can only truly know if they experience it, and we don't wish that on them.

Your words about it feeling like a betrayal hit home, and I thank you for your kind words, always.

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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/20/12 12:30 P

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Thanks guys! I needed to hear from others who suffer with this. He says I am mentally ill! He has gone to the Naturopath with me...now he calls her a quack. He calls Dr. Oz a quack and says IF I didn't listen to him and to others, I wouldn't feel like I have this. I have had all the tests; but anyone that believes in these diseases he thinks is a quack so...
I can't believe it! He 'seemed' to be so supportive at first, so did my daughters but they are just listening to him. They say that are tired of 'tippy toeing' around me; that I am too tired to know what is going on. This just adds to the stress and makes me feel more tired...it's a vicious circle. I am thankful that you are all here to support me. Thank you-

Edited by: CWPRAISINJC1 at: 1/20/2012 (13:18)
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KRISTYLH7's Photo KRISTYLH7 SparkPoints: (2,040)
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1/20/12 12:22 P

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If your husband has the ability to read and or hear then he cannot possibly ignore and not see & hear the commercials on TV about Fibromyalsia. There are also amny many groups on the internet as well as books at the library and bookstores. If he needs a real big eye opener take him to the doctor with you or have him join some of the sites on Facebook that are for the husbands, wifes, familys & friends of those of us who have Fibro!
I too would be happy to educate him about Fibro.
My Email Address is buddyhammak@yahoo.com
Don't lose heart ok...ignorance is not a disability...FIBRO is!
Kristy

Take Care Now! Kristy


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JEANNIE1238's Photo JEANNIE1238 Posts: 2,522
1/20/12 12:18 P

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It is hard to get people to understand what were going through. Even people who do support us still don't understand. This is the one issue we all suffer from is people not believing that this ailment exist. The spoon article that Kathy posted has been helpful in getting my family to understand what I'm going through.



Virginia,MN

DIANAPHOENIX's Photo DIANAPHOENIX Posts: 354
1/20/12 11:59 A

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Wow, I imagine we all wish fibromyalgia didn't exist; denial is just easier for those that don't have the condition...;-p.

We fibromites don't look sick, and that's a double-edged sword. My friends and family can certainly be confused by my on-again, off-again ailments, and even annoyed when I can't join in or cancel plans. It's even harder because I understand their frustration; at times, I'm pretty frustrated, too.

Many of the FMS organizations have brochures you can print out; maybe this will help you explain fibromyalgia to your family. Also, Dr. Teitelbaum's website has tons of information, and might have something you can show them.

Good luck to you.



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I.M.MAGIC's Photo I.M.MAGIC Posts: 12,820
1/20/12 11:57 A

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It feels like a betrayal, doesn't it... when someone you love can't believe in you or understand what you're going through.
I am SO sorry you're facing this all over again...

Fybromyalgia is one of what is called "invisible" diseases. There are few to no outward manifestations, it's all inside the body, and very little is known about it, even in the medical community... and people in our day and age have been taught to ignore or discount anything intangible, and thus tend to only believe what they can see-- until it happens to them. And I wouldn't wish this stuff on anyone...

the thing is, there are major studies going on all the time...

Have them check these out, especially the second one. The first is a simple way of explaining how these connective tissue diseases are to live with... and the second one is self-explanatory...

www.butyoudontlooksick.com/articles/
wr
itten-by-christine/the-spoon-theory-R>written-by-christine-miserandino/
www.anapsid.org/cnd/diagnosis/brainp
ai
n.html


Fibromyalgia is a PHYSICAL ailment, and you're not making it up. Your nervous system is wired differently from theirs, and it's a measurable FACT, even if they can't see it.

Hope your situation improves, m'dear...

Kathy emoticon emoticon

Edited by: I.M.MAGIC at: 1/20/2012 (11:59)
"The real secret of success is enthusiasm..." Walter P. Chrysler said it, I believe it. That's what I want in my life--to give my imagination a chance, to live with energy and enthusiasm!

Ralph Waldo Emerson said 'Life belongs to the energetic.' But you don't have to be frenetic and hyper--some energy is quiet and steady, like a heartbeat... and that works too! LOL

Life comes in specific increments, which we receive as a gift of one moment at a time. That's why it's called t


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CWPRAISINJC1's Photo CWPRAISINJC1 Posts: 383
1/20/12 11:41 A

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What do you do when your family is tired of you being tired? All of a sudden, my husband doesn't believe this conditon exists anymore and my (adult) daughters all think this is in my head apparently.
I am at a lost now...

Edited by: CWPRAISINJC1 at: 1/20/2012 (11:41)
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