The Big Imponderable - Real Serious Question

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The Big Imponderable - Real Serious Question

Postby notasperfectasyou » Sun Aug 30, 2009 6:14 pm

There seems to me to be a giant timeline, big picture kinda thing with MS. I'm wondering if we as a group can collectively give this idea form. I begin, with an analogy.

As a business major I had to take marketing. When you take marketing you learn about the product life cycle. There are 4 stages, innovation, growth, maturity, decline. A lot like life, childhood, young adulthood, maturity and golden years. In MS, I'm not talking about degrees of progression, but I want to talk about our outlook, trust in the doctors, willingness to experiment, sense we have to deal with it, sense we can let it go until tomorrow .... dang I 'm having trouble articulating, but I hope this is making sense. Add, sense you can control your destiny, don't need to take risks, need to be calculating, whether you care about being in control, or do you have faith in your doctor, how does religion matter or effect any of this? How do these things change over time?

I imagine someone life Harry who's been awhile would have a very valuable and insightful perspective. I imagine folks who just got diagnosed would feel scared. Folks like Marie, will take risks. Others like Lyon have looked towards trials. I think of Joan and Jimmylegs as trying to think their way through the minefield. I'm not looking to be corrected, but I'm wondering if our collective expereince somehow lays out and explains the life cycle of having MS. Ken
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Postby jimmylegs » Mon Aug 31, 2009 2:34 am

42!
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Postby notasperfectasyou » Mon Aug 31, 2009 1:54 pm

Lyon wrote:
notasperfectasyou wrote:I can only speculate that you've made some sort of decision to only pursue things that have made it to the trial stage. Do I have that right?
Hi Ken,
Despite the fact that the increased incidence of immune dysfunction among the "developed" populations had been an obsession of mine long before Jamie was diagnosed with MS, I'd be lying to say that we really have a pre-set game plan that we're comfortable with.

In my wife's case, she's comfortable getting her MS "news" from me because it honestly seems that MS is something she spends zero time considering on her own. Luckily, to this point the monster has allowed her to ignore it.

I suppose what drove us to the Tovaxin clinical trial was that in the months previous my wife's neuro had temporarily pulled her off Rebif due to high liver enzymes. When she was given the OK to go back on Rebif, she didn't and it was obvious that she had no intention of returning to pincushion status. She didn't complain about it when she was on Rebif but when I pressed her to get back on it she complained that it made her feel like crap all the time.

With the above in mind, she's not different than the majority of the American public in that, to her, the risk doesn't seem worth changing her lifestyle (ie..diet, ABX, needles/site reactions/flu symptoms) over a monster she caught a brief glimpse of over three years ago.

You and I know that MS won't be ignored indefinitely and it horrifies me that she's almost inevitably, eventually in for a rude awakening, but if she wants to live her life as long as possible in the bliss of intentional ignorance, more power to her.

I don't think that at this point she has the conviction that accepting life as a pincushion is certainly going to ward off disease advancement. Because she has no noticeable symptoms she has no enticement to go to the effort of ABX or diet change, etc.... considering that without symptoms and advancement she would have no way of determining benefit.

Why did she go on Tovaxin specifically? Basically because she wasn't on anything else and at that point the medical community was really hyping being on SOMETHING. Considering that MS is considered to be T cell motivated, the science behind Tovaxin seemed valid and, opportunely the Tovaxin show happened to be coming to a town near us.

In a quick proof read that seems to answer things as well as possible but if not, let me know.
Bob


This is the post that got me thinking about this thread. Here's Bob's wife kinda going along like it's not urgent to do anything now. I don't think this is unique. When Kim and I were dating, I got her to start taking supplements, she wasn't thinking beyond the Avonex she was enduring each week. Bob, sees a day when his wife will have a "rubber meets the road" kind of experience. Kim and I had this when she got the shiny brass ticket to SPMS from RRMS, then again when Novantrone was taken away. You're here at TIMS so I know you care. How have your feelings about MS and the urgency to do something changed with time?

Bob, Thanks againg for permission to borrow.

Ken
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Postby jimmylegs » Sat Sep 05, 2009 11:43 am

napay, i think you're possibly looking for something like this:

Five Stages of Accepting an Illness

Though symptoms of chronic illnesses differ, people with them are united by the denial, anger, fear, hope, and acceptance and other feelings they bring. Below are the five stages that people typically go through when they find out they have a chronic illness. Not everyone goes through these stages in the same order and it is common to go back and forth between stages as your physical health improves or worsens.

No matter what stage you are in, just accept that this is where you belong, go with it, and feel all the emotions you need to feel in order to move to the next stage. Don't rush this process. Let it happen naturally.

If you believe that you are stuck in one of the first four stages permanently, you may want to consult with a therapist. We all have problems that we need to cope with besides this illness, and they can sometimes prevent this process from occurring naturally.

1. Denial. Any change or loss in your life is likely to bring denial, and learning that you have a chronic disease can bring large doses of it. Someone in denial may believe a disease can't hurt them. They may ignore their doctors' advice that could help keep the disease under control. In the case of people with diabetes that may mean refusing to take medications or eat a proper diet. On the other hand, some people quickly accept a disease and turn their attention toward healing. These people stay abreast of medical advances and work with doctors to keep the disease in check.

2. Anger. What often fuels denial is anger--anger that an individual was the "one in 1,000" to get a disease. Anger may also be directed inward, with an individual blaming himself or herself for having the illness. The best way to minimize anger is to find outlets for it. Writing in a journal, attending a support group or meeting with a counselor are constructive ways to express anger. Anger is normal and can take a long time to work through. Sometimes a small part of anger stays with you throughout the entire illness.

3. Fear. Often underlying anger is the fear that comes with having a disease that can't be cured. People with chronic illnesses may start to view life through a "telephoto lens" instead of a "wide-angle lens". They stop planning ahead or making life changes because they believe they won't be around much longer. Fear is often enhanced when people know little about a disease, so combating it often begins with education. The more a person learns about a disease, the more they feel in control of it. Fear also occurs when you lose faith in your ability to fight and to believe in the plan of the Universe. This is the most important stage to work through. Fear does no good. It only causes toxins in your body that will make you sicker. Believe in the Master Plan and let the fear go as soon as you can. It will come back, but don't let it take over. Tell it that it is a useless feeling and that you are stronger than it is.

4. Grief. Feelings of grief and loss are common because chronic diseases bring life restrictions that others don't have to face. These may include no longer being able to participate in activities once enjoyed, like eating a favorite meal or playing catch with a grandchild. Grief can cause feelings of inadequacy and lead to withdrawal and isolation. Focusing on activities that remain unaffected by an illness can help people overcome these feelings. Those who refuse to think of themselves as 'sick' will have a more positive outlook. Joining a support group can also help. Groups allow people to meet others with the same disease who are still active and accomplishing goals.

5. Acceptance. Though managing a long-term illness can bring emotional upheaval, it also brings the triumphant feelings and strength that come with overcoming obstacles. Success comes in a variety of forms, whether it's controlling a disease with positive thinking, biofeedback, or physical therapy so well that less medication is needed or accepting that the illness has irrevocably changed your life and some of it is very, very good. With each success comes the confidence that you're able to live a full, rewarding life and maybe even a more meaningful life than if you hadn't gotten the illness.

obviously, to get at what you're after we need to modify this list a bit. first of all by changing the word acceptance, and branching out so that the positives are not buried in items with negative labels.
where's the 'proactive' stage. and what about the stage where it's so bad you expect to die and you start to feel like you would rather do so than suffer any more.
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Postby notasperfectasyou » Sun Sep 06, 2009 6:22 pm

Jimmylegs,
That was quite nice and useful. I was hoping that we might be able to personalize the thoughts along the lines of how we feel, how we used to feel, how we've changed along the way.

Loobie wrote a post a few weeks ago that really struck a chord with me, about how he felt he was running out of time and how he was motiviated to be interested in CCSVI. I suppose I'd have to look for it again.
Ken
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