Coping With C. diff. /The Ten Commandments of Surviving CD

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Bobbie
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Coping With C. diff. /The Ten Commandments of Surviving CD

Postby Bobbie » Mon Aug 08, 2005 3:53 pm

Allison, one of our first moderators, posted this. It is still timely - and comforting.

December 02, 2004

"THE FOUR CANDLES"

The Four Candles burned slowly.
Their Ambiance was so soft you could hear them speak...
The first candle said, "I Am Peace, but these days, nobody wants to keep
me lit."
Then Peace's flame slowly diminishes and goes out completely.

The second candle says, "I Am Faith, but these days, I am no longer
indispensable."
Then Faith's flame slowly diminishes and goes out completely.

Sadly the third candle spoke, "I Am Love and I haven't the strength to
stay lit any longer."
"People put me aside and don't understand my importance. They even
forget to love those who are nearest to them."
And waiting no longer, Love goes out completely.

Suddenly...

A child enters the room and sees the three candles no longer burning.
The child begins to cry, "Why are you not burning? You are supposed to
stay lit until the end."

Then the Fourth Candle spoke gently to the little boy, "Don't be afraid,
for I Am Hope, and while I still burn, we can re-light the other candles."
With Shining eyes the child took the Candle of Hope and lit the other
three candles.

Never let the Flame of Hope go out of your life.

With Hope, no matter how bad things look and are...Peace, Faith and Love
can Shine Brightly in our lives.

http://i.euniverse.com/funpages/cms_con ... andles.swf

Posted: Mon Aug 08, 2005 by Bobbie

(1) Read all the topics in the CDI section for a good overview of C. diff. In particular, read Dr. Borody's report on C. diff. Knowledge is power and will help you decide what questions to ask your own doctor.

(2) If you aren't having any luck with "tapering" Flagyl or Vanco., try Lauren's "pulsing" method (posted in the FAQ section).

(3) Follow the tips about hygiene and foods. (Also in the CDI section). Keep in mind, however, that everyone is different, and different foods bother different people.

(4) Concentrate on other things besides how horrible you feel. Chronically ill people often "fixate" on their problems to the extent that it becomes their whole life. It's easy to do, but while you are sick, you might as well do some "fun" things that you enjoy. Read, exercise, paint, or do whatever is your personal favorite. It might not speed your recovery but will improve your mental outlook, and at least you will have "a life" that doesn't center around your illness.

(5) Exercise is particularly beneficial. Try walking, yoga, lifting weights, aerobics or anything else you can manage. Even people who are debilitated from C. diff. can probably do simple stretching exercises. Exercise strengthens your body and your immune system and helps you cope with and fight any disease. It also keeps your mind occupied.

(6) When you are "out and about," locate the restrooms first in every store or other business. This will help prevent additional stress which often affects the GI tract. We've all heard of athletes who are sick before a race or game or people who become ill before speaking in public.

(7) When you go to your doctor, be professional, polite, and persistant. Enter your personal medical history (briefly) and a list of medications on your computer (double spaced) and print copies. (You can easily alter these to reflect later changes.) It also saves you the time from filling out additional forms in the doctor's office when you are already stressed. I put just my name, DOB, and address on the first page of their form and then attach my copies. If anyone complains, I tell her/him "Look at my writing on the first page. Would you like to read some more like it?" They always say, "No." Several doctors have told me this is a good idea. I also hand him/her a list of questions with my phone # and E-mail address at the bottom and tell them if they don't have time to answer my questions now, I would apreciate them contacting me later. I try to keep my questions brief and categorize them, keep a copy of the questions, go over them with the doctor, and write his/her answers in the margins. If you don't have a computer, hand print or type your information and questions and make copies.

(8) Consider finding another doctor if you feel your doctor isn't listening to you or makes comments such as "You are such an unusual or 'rare' case. Most people get over C. diff. quickly. There must be something else wrong." A second opinion is essential before going through additional invasive tests which have their own risks. For those of you who have more than one or two relapses after being off medication, seek the opinion of a qualified GI. Several of us have listed doctors we had good luck with in the "doctors" section. Be sure and check the "archived section" of doctors' names.

(9) Try to maintain a sense of humor. Being sick isn't funny, but laughing strengthens your immune system. Usually, there is nothing grimmer than an ill person. Even if you feel horrible, you can still laugh. I'll never forget going to Mayo. What a depressing experience! No one laughed, no one smiled. It was grim, grim, grim. My husband and I made what we considered funny comments (quietly) and laughed going down the halls. Everyone looked at us as thought we were taking off our clothes in church! What blasphemy to laugh in a hospital!

(10) Be cautious about taking other antibiotics during or after C. diff. Some people don't have a problem taking them, but others do. There is no way to predict if you can or can't. Be sure you stress "no antibiotics unless absolutely necessary" to other doctors and follow through by checking meds. with your pharmacist. CindyM just had a experience with this. Read her post on February 3 under "Venting from a Veteran" in General Discussion. Insist on any cultures or othe diagnostic tests that might indicate whether you have a bacterial infection (where you might need an antibiotic) or a viral one (where one isn't necesary).

(11) For stomach pain and cramps, try a heating pad. Set it on the lowest setting first and don't go to sleep with it on as it can cause burns. Many of the newest ones have automatic shutoff valves. The heat is comforting besides soothing the pain. Try Tylenol for pain as it affects your stomach less than other pain meds. There is also an antispasmodic called Levsin, but it is a prescription med. Some doctors recomend using either Imodium or Pepto Bismol. Imodium(loperamide HCI) was considered a "no no" with active C diff. for years because it was thought that it prevented the toxins from leaving the body. Several experts (including Dr. Borody) have said that this is no longer considered true. Both Imodium and Pepto Bismol only help control symptom, however, and don't "cure" the disease. Check using any of these meds. with your own doctor.

(12)Check out these tips with your own physician. This is a support site and not a medical site. The tips here might not work for you -- they are merely personal opinions on what helped get me through four years of C. diff. the first time and then another bout with it two years later.

(13) Remember, C. diff. is treatable and beatable. Unfortunately, in some cases, it takes a lot of time, trial and error, and patience, BUT YOU WILL GET BETTER.


Allison posted this Christmas Eve. Everyone with C. diff. should consult it every day.

Dec 24, 2005

To all my cdiff friends and family:
A blanket THANKYOU to all supporters - near and far, for reading and contributing to the site... and my warmest wishes for a HAPPY, HEALTHY, HOLIDAY SEASON.

The following is "borrowed" from another dread disease, but there are lessons to be learned here, so thought I would appropriate them for us as well.

For everyone that may be having a particularly hard time right now and are struggling to cope, please pay special attention to # 7, it worked for me and it will also work for YOU. I promise.

THE TEN COMMANDMENTS OF SURVIVING CDIFF

1.Thou shalt regard the words "Clostridium Difficile" as exactly that: some words. Nothing more, nothing less. Cdiff will fall mightily by the way-side in the future as have other fearsome diseases from the past, like smallpox and polio. And thus, too, shall go thy cdiff. The Answer shall come to those who shall be present to hear it. Be present to hear it when it comes.

2.Thou shalt love thy flagyl, vancomycin, questran, rifampin, probiotics and all thy other treatments even as thyself, for they are thy friends and champions. Although they may exact a toll for their endeavors, they are oft most generous in the favors they bestow.

3.Thou shalt participate fully in thy recovery. Thou shalt learn all the details of thy ailment, its diagnosis, its prognosis, its treatments, conventional and alternative. Thou shalt discuss them openly and candidly with thy physicians and shalt question all thou do not comprehend. Then, thou shalt cooperate intelligently, and knowledgeably with thy doctor.

4.Thou shalt regard thy ailment as a temporary detour in thy life and shalt plan thy future as though this detour had not occurred. Thou shalt never, at no time, nohow, regard thy temporary ailment as permanent. Thou shalt set long-term goals for thyself. For thou will verily recover and thy believing so will contribute mightily to thy recovery.

5.Thou shalt express thy feelings candidly and openly to thy loved ones for they, too suffer confusion and misunderstanding. Thou shalt comfort and reassure them for they, too, needest comforting and reassurance, even as thou doest.

6.Thou shalt be a comfort to thy fellow cdiffers, providing knowledge, encouragement, understanding and love. Thou shalt give them hope where there may be none, for in hope lies their salvation. And by doing so, thou providest comfort for thyself, as well.

7.Thou shalt never relinquish hope, no matter how thou may feelest at that moment, for thou knowest, in the deep recesses of thy heart, that thy discouragement is but fleeting and that a better day awaits thee, perhaps tomorrow, perhaps the day after tomorrow.

8.Thou shalt not regard thy ailment as the sum total of thy life but as merely a part of it. Fill thy life with other diversions, be they mundane, daring, altruistic, or merely amusing. To fill thy life with thy ailment is to surrender to it.

9.Thou shalt maintain, at all times and in all circumstances, thy sense of humor, for laughter lightens thy heart and hastens thy recovery. This is not an easy task, sometimes seemingly impossible, but it is a goal well worth the endeavor.

10.Thou shalt have enduring and unassailable faith, whether thy faith be in a Supreme Being, in Medical Science, in Thy Future, in Thyself, or in Whatever. Steadfastly sustain thy faith for it shall sustain thee.

Dorothy posted this description of the emotions that can accompany C. diff.

By Dorothy on Sunday, December 07, 2003

I remember that feeling so well. It was like my brain could not think about anything but c-diff all the time.It's like you just wish you could forget for a little while, but you can't. It is very hard for anyone who has not been through it to understand.

I'm here to offer you hope that it does END! I got c-diff last Feb. after the birth of my daughter. I was SICK until June when I did the infusions which cured me right away. Now 6 mos later c-diff is like an old nightmare. I was able to put it behind me in a way that I never thought possible last year. You will too!! It always goes away eventually, I learned that here and there were days when that was the mantra that got me through. I am now healthy and happy, but I have become a c-diff crusader trying to educate people about antibiotics, bowel flora and c-diff. It aint a pretty job , but it needs to be done. I am an ICU nurse, so I have a great forum. The doctors just LOVE how I lecture them!!

Since many people think they are "going crazy," I thought this subject deserved consideration.

Posted by Bobbie on Jul 28, 2005

Most people continue to question their own judgment about having C. diff. if their doctors doubt their symtoms. If you "feel" you still have it, you probably do. You know your own body better than anyone else -- even a health professional. You need his/her guidance, but you are the one who is ultimately responsible for your own care and the care of your family members or close friends.

Be courteous and professional but persistant when visiting your doctor. You are not "going crazy" (as many people state on this site). You have a disease that is still not well recognized and thus has been ignored for years. Tests are often incorrect or inconclusive.

There have been recent advances, however, due to the increasing cases of C. dff. caused by the flood of new antibiotics and their use. C. diff. has received a lot of publicity lately in the press due to the outbreaks in Canada and Chicago.

Posted: Thu Oct 27, 2005 by Bobbie

Some Ways to Combat Stress

C. diff. can cause a lot of stress. Here are some "stress relievers."

Stress-Reduction Techniques
• Practice The "Relaxation Response" And Similar Techniques
• Progressive Muscle Relaxation
• Visualization
• Relaxed Breathing Exercises
• Write About Your Stress
• Deflate The Danger Of Your Fears
• Remove Stressors
• Manage Your Time
• Maintain A Healthy Diet
• Exercise
• Socialize
• Seek Therapy
Last edited by Bobbie on Tue Jul 15, 2014 2:12 pm, edited 10 times in total.
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Emergency KIt

Postby Bobbie » Thu Jan 05, 2006 12:11 pm

Emergency Kit
To help you deal with C. diff., you might consider these additional tips:

(l) Carry a breath spray in your purse in case of an emergency trip to the restroom. It "masks" a lot.

(2) Always stay well hydrated. Drink eight to ten glasses of fluid a day. (Check this out with your own doctor because "they" keep changing the guidelines for fluid intake.) If you are having a particularly bad day, drink Gatorade as it will keep you from becoming dehyrated. If you have high blood pressure and need to restrict your sodium intake, mix water and Gatorade half and half. Many people wind up in the hospital with dehydration when they have C. diff. Hopefully, you can prevent this on your own, because hospitals are great places to pick up other infections.

(3) Make sure any health care provider washes his/ her hands before caring for you or your child or other loved ones. It takes them 20 to 30 seconds at most and might spare you or yours additional agony.
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Books Dealing with Chronic Illness

Postby Bobbie » Thu Jan 05, 2006 12:18 pm

By Bobbie on Thursday, December 23, 2004

A Taste of My Own Medicine; When the Doctor is the Patient by Edward Rosenbaum? It was retitled The Doctor. It was later made into a movie with William Hurt called but drastically changed.

Dr. Rosenbaum wrote the book in l988 (parts of it were reprinted in JAMA), but it is still relevant today. I'm going to add this info. to the FAQ column under Coping with C. diff. It's a great book for anyone with an illness or a sick family member or friend to read.

The author of the book was from originally from Omaha. He applied to both medical school and law school back when there was a minority quota. (He was Jewish). He was accepted into medical school and thought his grandmother would be so proud. Instead, she said, "Doctors are fine when you don't need them." Years later, she had a friend in a hospital and insisted on staying with the friend although the patient's doctors protested. The friend nearly died during the night, but because his grandmother was there, she lived.

The author later developed cancer and suddenly became "the patient." He didn't like it much. He was the head of a department in the hospital but was suddenly turned into a "number." I think it should be a "must" for students in medical school.

When I first had C. diff. in l993, I was misdiagnosed at Mayo. (The resident I saw said I had IBS). Later, I sent the twit a registered letter with the test results that showed I still had C. diff. and a note that said, "I expect to hear from you." He called immediately and apologized. I told him the next time a patient knew what he/she had, he should listen and that he should read the book [u]The Doctor[/u]. He agreed. Who knows if he did?

I believe the book is available on amazon.com.
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Postby Bobbie » Sat Apr 08, 2006 12:18 pm

Cindy contributed this.

cindym
Posted: Fri Apr 07, 2006

Okay everybody let me tell you all the steps in cdiff:
1) Frantic fear
2) Paranoia of antibiotics
3) Feelings of hopelessness
4) Thoughts that I may die
5) Frustration with doctors and lack of available treatments
6) Researching on internet to wee hours of the morning in desperation
7) Wanting to throw all meds out the door & forgetting about them
8) Deciding that I could care less if I do die
& FINALLY

9) ACCEPTANCE and realizing that even if I have this junk the rest of my life I can LIVE happy or choose to be MISERABLE and give up. Learning to appreciate the statement "Life is what you make it!" Understanding that if cdiff wanted to kill us we most likely would already be dead. Accepting medicine or whatever works to keep us feeling well until which time there are more treatments and alternatives available to end the war with this beast!

For all of you that have been dealing with this for a short period of time you can be sure that as time goes on it does get easier not only to deal with, but also to manage. I have had this beast 4.5 years and I have gone through each and every phase and I like the last one BEST! I also have learned to be very outspoken in regards to my treatment and find that in my case........it works!

Here's hoping that 2006 will bring the cure!
_________________
Cindy
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Postby Bobbie » Mon Jun 26, 2006 1:04 pm

Lauren posted some advice from her mother, and I think it should be the motto of this site: "I can dig a hole and climb into it, or I can keep putting one foot in front of the other when confronted with ugly situations."

It's difficult not to look back & think "if only" but better to keep marching (or limping) forward!!
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Postby Bobbie » Sun Oct 15, 2006 1:56 pm

Allison contributed this. Thx., Allison.

"The human body is a frail thing, but the spirit is relentless".

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I Dreamed a Dream

Postby Bobbie » Fri Apr 17, 2009 2:44 am

By now you've probably seen this many times, but I wanted to share it anyway. Even though it doesn't have anything to do with C. diff., it's an inspiration.

Full version: http://www.youtube.com/watch?v=wnmbJzH93NU&NR=1

Also see http://www.huffingtonpost.com/mark-blan ... 87901.html

For the lyrics, see http://www.youtube.com/watch?v=Yt-IBJpEMzA

Let us know about Susan's progress as a singer in the UK, Roy. What a voice!! What a performer! "Don't judge a book by its cover."
Last edited by Bobbie on Tue Jul 15, 2014 2:31 pm, edited 1 time in total.
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Re: Coping With C. diff. /The Ten Commandments of Surviving

Postby Bobbie » Mon Jul 22, 2013 2:56 am

Another post on lighting candles. One of our first moderators (Allison) posted the first one.

Have been to Westminster Abbey several times and lit candles each time. I have a prayer from Westminster framed on my refrigerator. It says:

By lighting this candle you join the many thousands who through the ages have made the Abbey a house of prayer. Light your candle and quietly offer your prayer to God.

For someone known to you who needs your prayers.

For the many unknown who also need your prayers.

For your home, city, town, parish, or church.

For Westminster Abbey and the ministry here.

GO IN THE PEACE OF CHRIST

For some reason burning candles has always comforted me because it's a physical way to pray. (BTW, I am not particularly a religious person although I go to church and volunteer there. I have been: (l) a Catholic, (2) a Presbyterian, (an Episcopalian, and now (4) a Methodist - my last and final choice. My dad was Catholic and my mom was Lutheran and way back in those days, a mixed marriage was a big deal!

When my younger son was ill a lot for years, I lit candles at night. After my older son was almost involved 911, I burned candles on our front porch for several days. (There was a forward - usually ignore them - that said to do so because there was supposed to be a photo of all the candles across the US to show thanks for those who had been spared and prayers for those who were dead or injured. ) Think it was a "scam" but did it anyway.

I still light candles when I need comfort. And with reoccurring C. diff. you will need all the comfort you can find.
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Re: Coping With C. diff. /The Ten Commandments of Surviving

Postby Bobbie » Sun Jul 06, 2014 9:02 pm

Nancy submitted this poem. Beautiful poem, Nancy.

"This is what I said for my mother when I put some of her ashes into a river in West Virginia last month, which is what she had requested before she died. I learned this poem in Girl Scout camp. It seems to be a good one for all of us on this site."

Peace I ask of thee O River
Peace peace peace.
When I learn to live serenely
Cares will cease.
From the hills I gather courage,
Visions of a day to be,
Strength to lead and faith to follow,
All are given unto me.
Peace I ask of thee O River
Peace peace peace.

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Re: Coping With C. diff. /The Ten Commandments of Surviving

Postby Bobbie » Mon Aug 11, 2014 1:35 am

l5 Things Not to Say to Someone with a Chronic Illness

Postby Bobbie » Mon Aug 11, 2014 12:26 am

A few weeks ago, I wrote a post about 15 Things Not to Say to Someone With a Chronic Illness. It has been by far the most popular post on my site. I am so glad that it has resonated with people, and hopefully a few people learned how to better relate to people in their lives with chronic illnesses.

A few people have mentioned to me that I should write about what people should say to people with chronic illnesses. So I can’t guarantee this list will apply to everyone, but here are 10 things that people with chronic illnesses want to hear:

1. I believe you

I already mentioned that this is the most powerful thing you can say to someone with a chronic illness. People who live with chronic illnesses are often met with doubt. Seeing is believing, and when you look outwardly healthy, people have a hard time believing you feel as sick as you say. For a person with a chronic illness, having someone believe them is validating and comforting. It will help them trust you because they are probably worried about whether you and the people in their life believe them or not all the time.

2. Can I come over and hang out?

Asking them if they want to come and hang out can be good too, but sometimes just the thought of leaving the house can be overwhelming for someone with a chronic illness. It takes up valuable energy- leaving little to do the fun activities that they were planning to do outside the home. You offering to come over is a huge gesture. It shows that you want to spend time with them, even if they aren’t up for leaving the house or doing something that takes energy.

3. Can I bring you food? or, Can I come over and help out around the house?

Obviously these aren’t things you should say or do all the time, because you probably don’t have time to do this every day. But on a day that you have time, or if you are already running errands for yourself, taking the extra few minutes to help your friend with a chronic illness will make a huge difference for them. For me, sometimes just doing the dishes is enough to make me need to take a nap. And on bad days I struggle to find the energy to get food. Offering to do these favors, whether or not they accept, is a wonderful gesture. It will help someone with a chronic illness feel that you understand what they are going through and care about them. Offering something specific is more helpful than just asking, is there anything I can do? (Not that that isn’t good to say as well!)

4. I know how hard you are trying

This is the opposite of “why don’t you just push through it?” and it is one of the best things you can say. Everyone likes their hard work acknowledged, but most people don’t see just making it through the day as hard work. For someone with a chronic illness a lot of times it really can be. And when I am working really hard just to make myself exercise for 10 minutes or do my biofeedback for the day, that outside encouragement can be the motivation to help get through it.

5. Any kind of hello or checking in after not seeing them for a while

Sometimes someone with a chronic illness doesn’t leave the house for a long time, or misses a lot of school or work. And adding to the difficult of their illness is the feeling of being forgotten or left behind. Out of sight, out of mind, right? So just checking in and saying hi and letting them know you’ve been thinking about them when you haven’t seen them around lately will go a really long way. It will probably make their day, and you will feel good for reaching out to them.

6. You are so strong

Constantly being in a fight with your own body is hard work. People with chronic illnesses usually feel weak from this fight, either physically, mentally, or both. Hearing that they are strong is validation that all their hard work is not unseen. And it can serve as a reminder that they have the strength to keep fighting day in and out.

7. I know how hard this was for you- thanks for using your energy to spend time with me

A friend of mine mentioned that her friend once said this to her after a long phone conversation. I realized how touched I would be if someone said this to me. Saying this helps a person with a chronic illness feel that you understand what they are going through and appreciate having them in your life. It also should make you feel good that someone with a chronic illness chooses to spend their limited energy with you, because it means they care about you!

8. Don’t feel bad if you have to cancel plans at the last minute, I understand

One of the constant feelings that comes along with a chronic illness is feeling guilty or like you are a burden to people in your life. I always feel terrible for canceling plans, and I sometimes do it at the latest possible moment because I am hoping I will feel better. And I sometimes beat myself up about it, even though it’s out of my control. I know this is common for people with chronic illnesses. Letting them know you don’t hold it against them will help alleviate that guilt. And it will make them more likely to make plans with you in the future, because they won’t be afraid of losing you as a friend if they cancel on you too often.

9. Sometimes the best thing you can say is nothing- just a hug or lending an ear

This is true of all people, right? Not just those with chronic illnesses. Sometimes the best, most supportive thing you can do for a friend or loved one is just show your support through a loving hug or letting them vent to you. Hugs are good for your health, so go hug your friends who have chronic illnesses. Usually just being a good listener is more helpful than trying to give good advice when you haven’t experienced chronic illness first hand.

10. I know this isn’t your fault

One of the main themes running through a chronic illness sufferers head is often self-blame. Which is totally unreasonable for most people. But it’s hard not to think, “If I only pushed myself a little harder” or “If I only ate a little healthier” or “If I only exercised for 20 minutes yesterday instead of 10 I would be better.” People with chronic illnesses learn from experience that these “if only’s” are just wishful thinking. Because the illness is not your fault. And so having an external reminder of that fact can really help solidify that idea for people with chronic illnesses, and help them remember that you don’t blame them for it either.

BONUS: When all else fails and you aren’t sure what to say: I wish I knew what to say, but I care about you and I’m here for you

You may never understand what it is like to have a chronic illness, and that is ok. That’s actually good, because it’s not usually a fun experience. But when you can’t think of what to say, it’s ok to say you don’t know what to say. And follow it up with a reminder that you care about them and you are there for them if they need you. Because when it comes down to it, it’s not about saying the absolute perfect thing, it’s about showing that you care.

This list is not meant to imply that these are the ONLY things you should say to someone with a chronic illness. All of these things should get through to someone with a chronic illness and be touching for them, depending on who the person is. Having a good support system is important no matter what situation you are in, and so these kinds of things let the person in your life with a chronic illness know you are on their team.

Copied with permission from Tracy Mac's support site on FB - Fecal Microbiota Transplant Site. I don't know if she wrote this list or quoted it from another source, but it certainly "fits."

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Re: Coping With C. diff. /The Ten Commandments of Surviving

Postby Bobbie » Thu Mar 19, 2015 7:21 pm

“Hope” is the thing with feathers

BY EMILY DICKINSON
“Hope” is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -

And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -

I’ve heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,
It asked a crumb - of me.


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