my town is rallying around.....(it gets even more strange)

Discussion in 'Fibromyalgia Main Forum' started by ilovepink4, May 22, 2010.

  1. ilovepink4

    ilovepink4 Member

    a popular, young wife/mom of 4 who just was diagnosed with stage 4 cancer. She is the picture of health and fitness. Her family are big time athletes. it is truly a sad situation. She is very,very positive and only talks of how she will beat this and how God will help her, etc. She has a Caring bridge website where she journals and people can leave her messages.

    In the 10 days that the news has been out, the church organized a Meal Blitz that had to be stopped because they had filled more than two freezers with food, the website has had over 18,000 messages from well wishers, the school where she teaches had a day where all the kids wore the same color shirt in honor of her, and that school is selling buttons and stuff to raise money for the family, the ENTIRE school district wore the school colors in support of her, there is going to be a HUGE fundraiser on Tuesday where they are mentioning things like the "first 300 people to arrive" so it will be a big function....

    I am not sure what my point is because I am not sure what I am feeling. I certainly do not want cancer and don't want anyone to have it. I do not want the entire town to fuss over me. I am grateful for each day I have being here with my children and husband even if I can only watch what they are doing. I have said this before. That at least I am HERE and am not missing out on my children growing up like some people who lose their lives from cancer.

    It is just amazing to me what support can be given when people understand how devastating an illness can be. I come here for support from all you fine people. Tonight, it was sad to read how someone's mother feels she is faking her illness.

    Just think how nice it would feel to not have to convince people you are truly ill? it would be nice to have just one person bring over a meal to give my husband a break from the cooking. or what about a fundraiser for all the people who are losing their homes because they can't work anymore due to Fm or CFS?

    wouldn't it be nice to have people marvel at how positive you are or how well you are handling your diagnosis.....maybe it is easier to be positive when you have a huge support system?....thousands of people pulling for you and praying for you!

    I would rather have FM over cancer anyday! I don't want to die. I want to see our kids grow up. And the treatments are grueling. the stress is awful. and the fear....the two don't compare....what i am comparing is the difference in the support and the reactions of others.

    What would really be awful to swallow, is to be living in my town, fighting your own battle with cancer and not having all these people to raise money for you.....or to sell buttons for you.....or even start a facebook page in support of you!!! it would be sad to have the same illness but not even be noticed by anyone.....

    it is almost like a hysteria....and people are jumping on the bandwagon because it is the thing to do....

    like I said before, I am not sure what I am feeling.....but, I feel ashamed in a way for how this town is turning out for one particular person when others with cancer don't get this type of help.....

    and I feel bitter that in order for people to want to give you a hand up, you have to have an approved illness.....a terminal one works.....what about all the people here who can't get out to get food....or can't afford that food?because they can't work and they can't get disablility....

    Something about this leaves me feeling unsettled.......

    Scroll to the end to see more strange behaviors.....

    [This Message was Edited on 05/25/2010]
  2. kat0465

    kat0465 New Member

    will do that to people, i guess it's cause we all know someone who has or had cancer, and it's deadly.
    While our disase is unfortunately a Hidden illness as they like to say. Also i think Pharma has a lot to do with it.
    if they can make a bizillion dollars off of an Illness, thier gonna make sure we are scared to death of it and push it down peoples throats.

    Just like for the last few years you see the Lyrica adds?! for Fibro. they neve push neurontin for fibro, which is a sister drug to Lyrica BUT Lyrica is way more expensive.

    we had a young girl in ourcommunity who was 16 when she got skin cancer,, and the bad kind! well ther were benefits galore, all kinda dont get me wrong i understand all of it.

    i's deadly an debilitating..... But so is Cfids/fibro. People just dont know it, we have to get out there in the spotlight somehow.
    i think if people knew anybody could become infected with a disease that was just as bad as aids( except you dont die Fast) they would be freakin out!!!

    Bottom line, if Big Phara can mke a bizillion dollars off of us, hey were In!!
    it's not fair, but i dont know what about this disease that is :(
    you have a right to feel the way you do
  3. Misfit101

    Misfit101 New Member

    I TOTALLY get what you are saying. None would wish something horrible on someone else. It would just be nice to have someone offer a small comfort instead of us always having to explain/defend ourselves just to be told that we dont look sick. Just an itty bitty somethin-somethin. I think what the town is doing is incredible...its just hard to be sick all the time and no one seemingly cares. I think awareness is coming..albeit slowly. A commercial for lyrica airs here and it makes me mad. It grossly understates FM symptoms. A mere drop in the bucket. But the word "fibromyalgia" is slowly getting out there. Gives me a tiny bit of hope.
  4. ilovepink4

    ilovepink4 Member

    you are right , caladonia, she is good looking and teaches exercise classes....she and her husband have huge parties and are very social....

    today, at church, this woman was a greeter and when she shook your hand, she slipped you a coin with a cross on one side and a request for your prayers on the other.....

    when bad things happened to my husband and I, we both would hole up and avoid people for a when our daughter was born 15 weeks prematurely, and when she was diagnosed with cerebral palsy....i think that if something this horrible happened to me, i would be home licking my wounds for a while until I was ready to face the world....everyone is different how they deal with their problems....very different.
  5. quanked

    quanked Member

    many of us to feel unsettled. It is not fair and it is so sad and can cause anger.

    Yes, I know, there are no promises that life would be fair. Still does not take the sting out of seeing unfairness.

    As aussiewman pointed out--cancer victims can present kodak moments and someone else pointed out that the cancer process is much more time limited than these dd's. Whether our dd's become recognized and respectable I never see these dd's becoming photo ops or projects that can take the community in and out in a reasonable amount of time (unless treatments become available that allow for relatively quick recovery times). Probably not in my lifetime.

    I hate these dd's. I am tired of trying to be reasonable and understanding of those who do not get it--who blame us. But then, what other choice is available to me I wonder.

    My aunt (she was 94) died on mother's day in a nursing home. Her memorial was in southern California this past Friday--I am in Oregon. Thanks to my dd's I could not attend. I did not go to my mom's or dad's services for so many reasons but I did want to go to my aunt's service. One more theft, on more loss.

    And I really could not explain why I could not go. I do not know how to explain these dd's--I always feel like I am making excuses so I just do a vague kind of thing.

    Kind of wandered off topic for a moment. Or maybe not. If I had cancer or some other kind of mainstream approved disease my dilemma may have presented other opportunities and help.

    I totally understand your bitterness ilovepink4--I share it.

  6. Junegal

    Junegal New Member

    I understand your bitterness because society doesn't view us as being sick, we are just a bunch of crazy lazies.

    This is horrible to even say, and I am sure I'll be punished for it (I'm being punished every day of my life with this horrible illness) but sometimes I wonder if the grass is greener over there. They don't have to explain the illness, people BELIEVE them and they get support. And here's the thing....most of them, after a terrible fight/illness DO get better and get their life back. Very few hang in the balance, like we will, for the rest of our lives. So it's definintely a gamble for them, but there is so much hope of getting better. We just sit and rot in silence, humiliation and isolation.
  7. HeavenlyRN

    HeavenlyRN New Member

    I'm sure all of you who have responded (and now me too) wouldn't have said the words you've written out loud to anyone but us.

    I have a personal story to tell - I'll try to make it short - and I haven't even verbalized this to my husband.

    I've been out of work for 5 months. Various problems: back and leg pain so severe I couldn't walk; 4 trips to the ER for pain control; hospitalization for severe kidney infection; hospitalization to remove a cyst on my kidney that turned into 2 surgeries in one day (the second one because I was bleeding out and almost died); then admission to hospital 4 days after discharge due to a bowel obstruction. Oh's been one thing after another. During the last 5 months we have had our electricity cut off twice, had to apply for food stamps, had to apply for assistance to help pay part of our electric bill, have had to battle - and I mean B-A-T-T-L-E, with my secondary disability insurance company, and I lost my job.....among other things. Oh, and yeah....we are currently awaiting the decision from a judge on my husband's SSD. I have had supportive cards and a few phone calls from my co-workers which I have appreciated.

    Last fall one of my co-workers, who was pregnant, found out that she had to leave work earlier than she had hoped and go on bed rest. One of our co-workers took up a collection for her and it was over $500.00!

    Don't get me wrong, I think it's great that we were able to do that for her. I was only able to donate a few dollars.

    But, I think I can say this here................I was a little upset. I'm not going to say any more than that because I don't want to sound sn*tty.
    I will say, however, that I hope I didn't offend anyone.

    Ilovepink4.....I give you a lot of credit for starting this thread.
  8. Misfit101

    Misfit101 New Member

    Takes a lot of courage to come out and admit to these feelings. And I wouldnt want a fuss made over me as well...but you cant call when youre on your way to town and ask if you can pick something up? The anger is justified and I think it stems from emotional pain. . . . . Jan you are one brave lady. I have to believe that things are going to smooth out. Im so hoping for it. Its past time. Im speechless at what youve been thru. When I worked I cant tell you how many times money was collected for one person and not another. Made me wonder what some ppl had that others didnt. Now dh donates at work and still others are ignored and Im still wondering. I had the warning that life isnt fair but that did nothing to make me more accepting. And I hate being told "well it could be worse". Really? You want to try this on and tell me what you think is worse? Might change your mind on what you think worse is. Very good thread.
    [This Message was Edited on 05/23/2010]
  9. slowdreamer

    slowdreamer New Member

    Just wanted to reply to your post on Pinks discussion on ironies of CFS.

    When I say to people I did not go to my fathers funeral it seems to stop them in their tracks and I never thought I would meet anyone else who could say the same thing..So there you are I understand even though I do not know you or your circumstances.

    Planet CFS is another place ..It is free from hype and I believe it has great depth..Probably frightens people .So much human activity seems so pointless to me these days..why do people waste energy on veneers and appearances.Love your name.
    All the best
  10. victoria

    victoria New Member

    except to say I agree totally with all your opinions.
  11. karynwolfe

    karynwolfe New Member

    I completely understand where you are coming from. I hope our replies make you feel less alone.

    You said it all with the line, What would our lives be like if we didn't have to constantly prove we were ill?

    What if we told someone "I have M.E." and just a normal, everyday person understood that this means the same thing as "I've lost everything I used to love and may never, ever get it back." What if we could go to a hospital with sudden severe symptoms or progression of our disease and have people take that seriously or make cards for us or tell us to hang in there, instead of no one being able to find anything wrong enough on the lab reports and send us home for just wanting "attention."

    What if we got the recognition that the more common diseases get today.

    Well... Our day is coming. There was a day when several other neurological diseases were thought to be a crazy person's illness. And now they have support... We will be next.
  12. siestasuze

    siestasuze New Member

    And it is hard to not have guilt feelings about it. My dear, sweet husband lost his father 6 years ago to cancer. It was so horrible, all the treatments, pain, sadness for his family as well as for his father.

    My hubby sheds tears on a daily basis because he misses him that much.

    However, he NEVER talks to HIS family about me. Whenever I'm not able to go visit his family or to their family events, loaded with guilt(me). they don't miss me. They NEVER ask how I am. I'm sure they see these stupid PHARMA commercials on TV showing an actress with "fibro pain" and just think I'm lazy. I wish they would put one of "us" in their fibro commercials!!!

    It really upsets me, I feel like he's maybe embarrassed because of all my problems, BUT I DO NOT "LOOK SICK"! I hate to say that because he is the "dream of a husband, friend, provider", and supports me with so much compassion and love. So I feel really guilty.

    So PINK, I can totally understand your feelings, as I have commented to my husband before, having fibro and chronic pain and everything else, is like having a terminal illness but there being no "other side" to cross over to when our bodies feel useless and hurt soooo bad.


    P>S> I appreciate having this site and all you wonderful "understanding" people to share feelings with, which without I would probably explode![This Message was Edited on 05/25/2010]
  13. Misfit101

    Misfit101 New Member

    I dont know about the rest of you...but I dont share EVERYTHING about this DD with my DH. Or anyone else. He doesnt know that i cant shower every day or even every other day bc the energy just. isnt. there. And i cant force it. Nor does he know about the incontinence. These are 2 things i just cant reveal bc its humiliating. I cant believe i just admitted to it here. And no one...i mean NO ONE...not even my own children ever picks up the phone just to ask how i am. Ever. One daughter has TEN THOUSAND text msgs a month. I know bc shes on our plan. And yet not ONE msg a month to ask how i am. Breaks my heart.
    [This Message was Edited on 05/25/2010]
  14. HeavenlyRN

    HeavenlyRN New Member

    I hope his doesn't come off as sounding condescending, but I think you are very brave to post the above.

    And,just so you know......I share your "issues."

    Love ya - Jan
  15. Misfit101

    Misfit101 New Member dont have a condescending bone in your body. {hugs}
  16. AuntTammie

    AuntTammie New Member

    just wanted you to know that I can totally understand how you feel and have often thought/felt similar things.....I have honestly even felt jealous of people with other health issues (even potentially terminal ones) bc they do get support and understanding, and bc they either get better or they die

    .....they usually do not have to live yrs and yrs and yrs with their illnesses -yes there are definitely some exceptions to this, but for the most part other illnesses are either over, in one way or another, or they are not as disabling as ME/CFS/FM can be....and even the other illnesses that are chronic and really bad are at least somewhat understood and people have more compassion about them

    there are only a couple of conditions that I can think of that would be (for me) as bad or worse to deal with than what I have now

    that is not at all to say that I do not feel for people with other illnesses, or that I begrudge them the support and compassion that they get.....I most definitely do care about what they are going thru and I am happy for them that they are able to get people to rally around them

    at this point, I would rather die than spend the rest of my life this sick or I am not suicidal - please don't misunderstand that
  17. quanked

    quanked Member

    Are you THE caretaker in your family, the problem solver, always the helper and rarely (if ever) the helped? Are you thought of as strong, responsible, an individual who is able to take care one's self?

    If so, that is why most others do not inquire about your well being.

    I know this role well.
  18. HeavenlyRN

    HeavenlyRN New Member

    I don't know about the rest of you, but this is the only place I feel comfortable and unafraid to say what I'm really thinking. It's like a breath of fresh air, a cheap therapist, a warm blanket on a cold night, a glass of cold water on a hot day....OK, OK, you get the drift. It just makes me feel GOOD!

    I'm so glad we have each other.
  19. HeavenlyRN

    HeavenlyRN New Member

    I don't know about the rest of you, but this is the only place I feel comfortable and unafraid to say what I'm really thinking. It's like a breath of fresh air, a cheap therapist, a warm blanket on a cold night, a glass of cold water on a hot day....OK, OK, you get the drift. It just makes me feel GOOD!

    I'm so glad we have each other.
  20. Misfit101

    Misfit101 New Member

    Have we met? Yes to all the questions you posed. In my very possibly skewed way of thinking...its precisely BECAUSE of that perception that when Im having trouble, ppl ought to think "if SHE is saying its must be BAD." And maybe at least a phone call would be nice. Ive HAD to be all those things. Mother died at 12. Father abandoned me after that. I kid you 15 I was living on my own working 2 jobs and going to school. Thats just the beginning. So i had to be those things or i wouldnt have survived my own self. I totally get your point though. I think maybe i expect too much from ppl sometimes. You know the saying...if you dont expect anything, you wont be disappointed. I tend to disagree with that. Im frequently disappointed. In myself moreso than anyone else.