Re: town rallies around young mom....

Discussion in 'Fibromyalgia Main Forum' started by ilovepink4, Jun 12, 2010.

  1. ilovepink4

    ilovepink4 Member

    Since so many of us were discussing this post and how it made us feel, I thought I would post an update....

    I think what is bothering me the most is the volume of reaction to this family's tragic situation....compared to the reaction toward other cancer families in our town....i feel almost embarrassed and keep thinking about all the people who don't have a fraction of this type of support....and I have moved on....mostly, to be honest-probably not completely- from feeling frustrated over the lack of understanding and support towards me and people like me....with invisible, yet devastating illnesses.

    The latest crazy thing is there is another fundraiser being planned.....a biggie....and people in town are PAYING $5 to put a sign in their yard advertising the fundraiser!!! like a political sign!

    paying to have the opportunity to put a sign in their yard......

    If I am left with a bad taste in my mouth over this, can you imagine how another cancer sufferer must feel, to live in the same town and not have anyone outside of their family give a hoot....???

    One thing that digs at me, personally is that after her medical treatments, she and hubby hurry off to catch a ball game....and take photos of her with a bandage with a team logo on it...and she is smiling and having a good time....I don't feel good enough to go to the grocery store. I just lay here day after day....Have I just given up? Am I just a weak person? Or can you truly have stage 4 cancer and still feel good enough to go do things that are just for fun?

    Remember how Patrick Swayze had that vicious pancreatic cancer and still went to work, shooting his tv show...i forget the name of it...something like The Beast or ??? now that doesn't even sound right....anyways, how bad is the pain of cancer?

    Is it possible that if you are looking at the very near end of your life, you cqan drag yourself out of bed and do things for fun? To try to live life to the fullest. Would I be motivated to try to do more if I was dying soon? Would I notice the burning, screaming pain in my body less, if I knew my days were numbered?

    Is it better to have cancer and have 2 years with some pain or 30 years of constant pain,loneliness and no end in sight?

    This is where I remind myself that "I would rather be here, with my kids, watching them grow up than not here at all. At least I can watch them go through life."

  2. gapsych

    gapsych New Member

    I am so sorry. Anniversaries can be so hard. Take care of yourself tomorrow. It's just not fair, is it.

    I am just having difficulty understanding this post.

    Jealous over someone who is dying? Something ain't right here.

  3. Misfit101

    Misfit101 New Member

    Theres a difference between seeking attention and desiring validation and just maybe an attempt at understanding? No way would i want the kind of attention this woman is getting. But to have ppl understand fm/cfs the way they do other illnesses would be nice for most. If it were as commonly understood maybe no one would never be told the things some of us have been told. There have been numerous posts to that effect. And no doubt that ALL persons suffering from something that affects their lives in such a profound way could use a little empathy. Not sympathy. Just a bit of comfort sometimes. These DDs rob us of things that most cant begin to understand. Or maybe they just dont want to.
  4. Misfit101

    Misfit101 New Member

    Do i dare say it? That after YEARS of seemingly no one caring that one could have feelings of anger...jealousy...resentment? Not attributing these specifically to pink...but ive personally been downright angry at both the illness and the ignorance of same. And if you try with everything youve got to make someone get it just to be met with derision and disbelief? I can so see where a gamut of emotions would rear their heads. Not all things can be worked out thru a therapist. Maybe someone doing something as innocuous as dropping off a home cooked meal or doing a load of laundry would help more than a few hours in a therapists office. Or a genuine "how are you" and it mattering if you say its a bad day. Maybe im missing something here. Wouldnt be the 1st time.
  5. quanked

    quanked Member

    From what you describe about this woman, and her family, it DOES sound like there are extraordinary efforts being made on their behalf. But then I am not sure what is normally done on the behalf of others in her situation. All these events, to me, sound overwhelming and tiring.

    I understand your musings over this situation. Why them and not another family or individual, or why not them and all the others in the same boat (or maybe why not me?) one might wonder. It does seem inequitable to me.

    Unfortunately, the world is filled with lots of inequities every minute, hour, day, week, year, etc. There really is no other explanation in my opinion.

    As for what individuals can do in stage 4 cancer I do not know. Is their physical suffering worse than someone with FM/CFIDS? My sense is that we are all different and our diseases and the severity vary from person to person.

    A year ago I met a woman who said she had FM. She worked full time as a director of a large day care provider for infants to older children. She kept large animals at her home. She then took on the foster of care of 5 children--infant on up--for about 5 months. She also has a husband. The needs of these children were high. In the middle of this she had to move the day care center to another building.

    Now you tell me, does this sound like a person with FM? She was very high energy. She does not sound like anyone that I have read about on this board. But she says she has FM. Who am I too say she does not?

    Then I read about others here with FM who sound like they lead very hard and painful lives due to their FM. I can hardly read some posts because the writers seem to be in such excruciating pain for so much of their day and it disturbs me. I wonder how they can go on each day. And I hope that I never get the point they are. I guess it scares me.

    Then there are the others who fall between these two extremes.

    Are you questioning your motivation level? Somehow, in my opinion, if this woman was experiencing unbearable pain she would not be out and about. She probably takes medications to help with pain, may have a high tolerance for pain, or may only have moderate pain. We do not know.

    Ever know a woman who gave birth vaginally, without pain medicatons, but only had a couple of labor pains? I still find this possibility astounding but we all are different. I have known a couple of women who gave birth to children almost pain free and without drugs.

    I do not know you personally, but from what I have read about others on this board motivation is not the problem. Unless motivation was a problem for you pre these dd's then I doubt that knowing you will be dying soon is going to get you past your pain and out and about. Maybe a good drug might do this for you but impending death is not going to suddenly make it possible for you to do what you have not been able to do.

    Speaking for myself, motivation is not my problem. I am highly motivated and interested. Physical exhaustion, pain, brain fog, etc.--these are my problems.

    To me, it seems pointless to wonder which disease would be better to have as we do not get to choose.

    If you are feeling jealous, angry, resentful, ignored, treated unfairly then join the club because I think that there are many here in this club. We have dd's that many discriminate against--both in the medical field and among everyday people. I just do not see any fund raisers in my future to help me take care of my needs brought on by these dd's.

    Hell, I would be willing to settle for so much less than this woman is recieving. At this point I would be content to not have to ever think again about how to explain these dd's, to have insurance pay for tx for all things related to these dd's, to just have a friend or 2 lend a helping hand now and then, to be able to find easy to understand information on these dd's, etc.

    It is only human to compare ourselves to others. It may not always be useful but it is very human.

    I cannot remember what you said in your earlier post--does your husband "donate" his time toward helping you?

  6. gapsych

    gapsych New Member

    I really apologize if I was harsh. I did not realize there was another post. Hang in there, we are all in this together.

  7. AuntTammie

    AuntTammie New Member

    the amt of old threads I am trying to bypass is really a bit insane
  8. karynwolfe

    karynwolfe New Member

    Not much to add but just wanted to say I think you are brave for stating the things that nearly all of us think, but don't say, for fear or judgment. Never feel afraid to share with us what's on your mind--99% chance we've all thought about it, too.
  9. ilovepink4

    ilovepink4 Member

    I obviously wouldn't want to be this woman or her husband, her kids, her parents, her family, friends....and when i heard she was sick, I questioned if I had the right person in my head...could someone so healthy get so sick? someone who teaches exercise classes at the y, coaches sports, teaches full time, and has four could someone that healthy be so sick? it is like the runners who eat right and are in top shape keeling over with a fatal heartattack....

    And sorry to the people who want to add some drama here....i don't give a sh!t if you think I need help....and thanks to the people who GET what I am saying....:O)Because so many responded in the first post, I thought you might be interested in more of the story....maybe not.

    there is a little girl that attends the school where "this woman" teaches....I looked at her caring bridge site and there were 4000 messages for her in the past 5 months....and 40,000 for the "woman" in the past 3 weeks....I wonder about her do they juggle the kids, jobs, and traveling for reading her journal, they seemed to be having a bit of a tough time...and didn't have much time for writing in the journal on caring bridge....

    At first, I felt like Jeez, look what happens when you have cancer....everyone understands it and is helpful and what...but! after watching this rush to join in (to help one of the most popular families in our was a pro hockey player, kids are athletes and they all are very good looking and have lots of parties, etc), I am cringing with this almost extreme behavior....people are BUYING a yard sign that says there is a fund raiser happening....almost like people are helping out because it is a good move socially...

    One more time here is my point- I feel really bad for people in the same situation, that don't have that type of support....a father with cancer and no job, no insurance....a single mother , with cancer .....I have never seen anything like this for another person in our area....

    If this has crossed my mind, and I have nothing like stage four lung cancer, i wonder what other cancer victims feel watching this, the ones who don't have any fundraisers, or gift cards for the local fancy restaurant, or a group of women who come to their home to make juice for her special diet....many people in our country DIE because they have no insurance OR their insurance refuses to cover their treatments....the woman I am talking about has the same health insurance as we do....and it is very good....except the dental sucks...

    so, there are much more painful injustices than what we suffer by not having our illnesses recognized....

    [This Message was Edited on 06/14/2010]
  10. gapsych

    gapsych New Member

    It's just not worth it to obsess over things like this. I understand the feeling, I really do. We are all in this together. But this is not about a popularity contest. This is not about gossip. So what if she has the same insurance? She is not "this woman". She is a human being and she is dying.

    It's not fair that our DD is not recognized. We do need to vent. But sometimes we get so stuck in our thinking that we can't move on. Ruminating about this situation can't be helping your health.

    It's just the way the world works and you can choose to be angry and bitter about this situation, wasting time and energy, or move on. If we go around and keep tally of every slight against us, every injustice in the world, we are being our own worse enemy and it will literally eat you alive. In the end does it really matter?

    I don't usually like self help books but I found one that is very helpful. It's title is, "The Resilience Factor- Seven Keys to Finding You Inner Strength and Overcoming Life's Hurdles.

    We can't expect people to understand and empathize with our illness when we can't do the same thing for others.

    Take care.

    [This Message was Edited on 06/15/2010]
  11. shari1677

    shari1677 New Member

    Interesting post! I was just thinking about this actually.

    A friend of mine had cancer about 3 years ago. She went through 2 or 3 rounds of chemotherapy and radiation therapy. She worked full-time through the whole thing, without a blink of an eye. (she did lose her hair).

    I have trouble working full-time. I have trouble doing anything. I also lay on the couch watching TV day after day.
  12. AuntTammie

    AuntTammie New Member

    I totally understand your reaction (& I wrote about it on your first thread re this)......I hope that you can find a way to cope with it, though, for your own sake bc it will just agravate your own condition to stay too upset about it (I know that's easier said than done, though.....I have certainly had similar thoughts about similar types of things)

    about this comment, though......"when i heard she was sick, I questioned if I had the right person in my head...could someone so healthy get so sick? someone who teaches exercise classes at the y, coaches sports, teaches full time, and has four could someone that healthy be so sick"

    ......there are a lot of people with our illnesses (inc myself) who were previously very healthy, too.....I used to run full marathons, train for triathlons, work out twice a day most days, and work, go to school, go to church, have a social life, etc, etc, etc and I also ate very I have ME/CFS, FM, MCS, OI, Myofacial Pain Syndrome, Circadian Rhythm Disorder, TMJ, Endometriosis, Sciatica, Asthma, and a few other diagnoses and am barely able to take care of myself

    also re cancer and what patients can do....I know that it varies a lot and I don't like comparisons, in general, but I do also know of quite a few people who have had both cancer and ME/CFS and they have all said that the cancer treatment was easier to take than the ME/CFS and their lives were not nearly as disrupted with it as they are with ME/CFS

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