THE NATIONAL HEALTH COUNCIL
Reply: The Loneliness of Chronic IllnessWhy can't you talk about it? Turn your furies loose and let the fly away. Maybe...
Why can't you talk about it? Turn your furies loose and let the fly away. Maybe they will disappear. Keep rubbing that lamp.
My best,
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Reply: The Loneliness of Chronic IllnessAnd you are not alone. I do not know your condition. Find others with the same...
And you are not alone. I do not know your condition. Find others with the same illness. Reach out. Touch and be touched. Strength spreads like an electric current. Come out f your hole.
My best,
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Reply: The Loneliness of Chronic IllnessI have not heard of Pruigo Nodularis. There are many more chronic conditions than...
I have not heard of Pruigo Nodularis. There are many more chronic conditions than any of us can name. And there are so many of us. Wouldn't it be wonderful if we were connected instead of crawling into our separate caves. I know you. You are me, and together we are all of us. Come out into the light and know you are not alone. I will scratch your back for you.
My best,
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Reply: The Loneliness of Chronic IllnessLinda: You have wonderful, generous instincts. You make an important point about...
Linda:
You have wonderful, generous instincts. You make an important point about strength at the top of your posting. Illness does teach us how strong we are. Truth be told, we are stronger than we think we are. How many times do you overhear someone telling another, I could never cope with that or I couldn't deal with anything like that. I just silently smile. How do they know until they've been tested. Most of us rise to the challenge. With a chronic illness, that can come everyday.
My best,
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Reply: The Loneliness of Chronic IllnessStuttering for most is an island, pulling those affected far away from the...
Stuttering for most is an island, pulling those affected far away from the mainstream. That condition will bring a unique loneliness to all who struggle to speak normally and be taken seriously. Stuttering brings out cruelty in many who find it funny. If less obvious chronic conditions bring about isolation, stuttering, as with mental illnesses, carries a special stigma. With other conditions, isolation can be self-imposed. For stutterers, it is self-defense, a sad survival mechanism.
Chronic conditions are tough enough. A little kindness could go a long way.
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The Loneliness of Chronic Illness To all who read and care: Many, even most, who have opened up and told their...
To all who read and care:
Many, even most, who have opened up and told their stories here project an unstated sense of loneliness. You do not share easily. For some, talking about your chronic problems is a new experience. Let me tell you, as one who has endured chronic conditions for well over half my life, aloneness is with me every step of the way. I have a loving wife and children, an emotional infrastructure that surrounds and comforts. Still, I feel I am alone. I just am.
Illness is a solitary battle. We die alone and so, too, suffer on our own. Nobody knows the experience or how we feel. How could they? Most of us do not want to inflict our pain on others. And so the hurt is buried deep within. We protect families and friends from tough realities. Is all of this good? Probably not. And so we seek out others traveling the same lonely highway. We long to touch and be touched.
We are not alone. Many of draw strength and support from others with the same conditions. We need each other and are there for others, day and night. Those who share the horror do not even need to be told. We just know. We do not have to be alone. Support is there for the asking. Reaching out to those who have been there allows us to accept love from those who have not.
My best,
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Reply: Hospital Care - Amazingly PoorWhen my New York neurologists wanted me to try a new therapy, they added that I...
When my New York neurologists wanted me to try a new therapy, they added that I would have to be admitted to the hospital. I refused. A Harvard doc later asked me, "Why would they do that? Hospitals are where you go to get sick?" That reminded me of when I had been hospitalized for colon cancer and nurses just kept telling me to get out of there as soon as possible.
These are not confidence builders.
Hospitals are hotbeds of infection and communicable diseases. Haven't they always been? Maybe there are new strains of organisms you never want to meet. Or perhaps there is a breakdown in a hospital staff's ability to keep the place safe. Our animals are routinely boarded with the vet. They have not expressed any concern. If human hospitals are death traps, can anyone out there tell me why? None of this explains why the food is inedible.
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Reply: Hearing the Worst from your DoctorDear purpleslippersorangebedsocks- It is good to hear from you. I know how...
Dear purpleslippersorangebedsocks-
It is good to hear from you. I know how difficult it is to share, how painful to reveal. I also know that we construct monsters in our heads. We allow MS to overtake and take over our identities because those two letters are all we see when we gaze into the mirror. I went through that when I was younger, even though I was a successful journalist with many friends.
You are not your disease. I'll bet I could make you smile if I met you. Please break out of your funk. Help others and smile. Live your life. We are too afraid of others, which is why we stay in the closet. It is dark in there, and all you get is a runaway imagination and socks and slippers that do not match.
My best,
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Reply: Hospital Care - Amazingly PoorSadly, poor hospital care is the new normal in much of America. We used to go into...
Sadly, poor hospital care is the new normal in much of America. We used to go into hospitals to get better. Now we only can desperately hope we don't get worse. Or die. Here is my rule for myself. Do not get admitted to a hospital unless you have been run over by an eighteen wheeler.
Teaching hospitals are a cut above others. There is a nursing shortage everywhere, and nurses define quality of care. Interns and residents are over-worked. Hospitalists are a new breed of doctors who look out for the interests of the institution and will discharge you if the bleeding at least slows.
Okay. I exaggerate. But maybe not by much.
Only consumers collectively complaining and threatening a boycott can change the system. Hospitals cannot afford to lose business. That is what they care about.
What do you think? Is anyone out there pleased as punch with hospital care?
My best,
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Reply: no diagnosis?possible MSIt sounds as if your neuro trained in Germany in, say, the 1940s. Good riddance to...
It sounds as if your neuro trained in Germany in, say, the 1940s. Good riddance to bad medicine.
Are you near a chapter of the MS Society? There is one in every state. Tell them your problem and ask for a name. Where is the nearest medical center, teaching hospital, medical society? Can you travel to a metropolitan area? Ask those you know and trust.
Neurologists do not tend to be the warmest human beings around. Maybe just look under a rock.
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