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» LymeNet Flash » Questions and Discussion » General Support » Something to share with friends and family members...

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Author Topic: Something to share with friends and family members...
Melanie Reber
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Thank you Lightfoot for passing this along:
http://www.angelfire.com/biz/romarkaraoke/ButYou.html



But You "LOOK" Good!
The wrong thing to say to someone with a chronic illness.


What Is A Chronic Illness, Anyway?


A chronic illness is a disease or disorder that a person has to cope with on a continuous basis. Many people become so ill, they are unable to work and are forced to give up activities they have always enjoyed. Often their illness goes undiagnosed for years, leaving thousands of people frustrated, depressed and without answers to why their bodies will not cooperate with their desires.


But, They "LOOK" Fine! How Can They Be Ill?

Many chronic illnesses such as: Arthritis, Chemical Depression, Crohn's Disease, CFIDS, Cystic Fibrosis, Diabetes, Fibromyalgia, Heart Disorders, Hypothyroidism, IBS, Lyme Disease, Lupus, Multiple Sclerosis, Neurological Disorders, Osteoporosis, Parkinson's, RSD, Women's Chronic Disorders and many, many others cannot be seen with the naked eye, but are nevertheless persistently keeping the person from enjoying life the way they once knew (this is only a sample of the dozens of illnesses which can be debilitating and not intended to be a complete list)!

Unfortunately, their families and friends are rarely supportive and understanding, because they do not see a broken bone or bleeding head to confirm the complaints. However, do not expect to see a disease that lives below the skin, because most illnesses are invisible until the person has had chemo or organ failure! Your friend or family member needs you to believe what they are saying is true, without judgment or question.


So, They Have "Good" & "Bad" Days, Right?

Actually, not everyone with a chronic illness has the same symptoms or degree of symptoms; yet, there are basically three stages in any chronic illness:


1) THE EARLY STAGE: This person may notice occasional symptoms or lack of energy. They start experiencing setbacks from activities which previously never took a thought. If diagnosed in this stage, which is rare, many can get help from their doctors and proper nutrition to cure or prevent further progression of the disease. This person has mostly "good" days with occasional "bad" days.

2) THE MIDDLE STAGE (or the Relapsing/Remitting Stage): This person may have frequent bouts of symptoms and is forced to make limitations for themselves in order to avoid extreme fatigue and relapse of illness. They reluctantly begin discovering that the simple things they used to enjoy, now must be done with care or sacrificed completely. In this stage, some can lower the frequency of relapse and progression of the disease with help from their doctors and proper nutrition. This person has both "good" and "bad" days, depending on activity and stress.

3) THE LATE STAGE (or the Chronic/Progressive Stage): This person's disease has progressed to the point where it does not remit. They live each and every day with symptoms that feel much like having the stomach flu, complete with extreme to unimaginable fatigue, muscle aches, weakness, nausea, cognitive difficulties, dizziness and/or pain.

When they push themselves to do what used to be easy, like dusting a piece of furniture, going to a relative's house or doing a load of laundry, they pay a high price, because their symptoms worsen to an unbearable level for days and even months. In cases like Multiple Sclerosis, the treating drugs available are affective only for persons in stages 1 and 2. This person does not have "good" days, only "bad" days and "horrific" days.

But, What If They "Give In" To The Illness?

When a young ice skater named Nancy Karrigan was assaulted and suffered a leg injury, she faced the possibility of losing all of which she had dreamed; the whole world cried with Nancy, because it could have meant the end of her skating career! Yet, when a person loses their job or is forced to give up their career due to illness, for some reason, people often treat them like they are choosing to do so; and, they are often insensitive to the fact that the sufferer has lost all for which they have worked, planned and hoped for their future.

Most people do not "give in" to illness; in fact, it is ingrained in our nature to fight to survive as hard and as long as humanly possibly. If you believe that your loved one is "giving in" to the illness, because they have given up their usual activities, this is just your perception of how they are handling their limitations.

When a person first experiences the effects of a chronic illness, they have a fantastic attitude about conquering it; they feel strong and invincible to its grip. Even if the disease progresses, they will continue to fight for their right to live the way they planned their lives to be; and, they will stay persistent in the battle until their bodies force them to make limitations.

Creating limitations for oneself is one of the hardest things a person can do. It goes against everything we are and everything we ever hoped to be. No one wants to be sick and no one ever chooses to give up those things in life which bring such joy. Yet, these limitations are mandatory in managing a chronic illness; so, respect their new boundaries by acknowledging their losses and supporting their need to say, "No."

We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.


Well, I Still Don't Understand!

At least once in your life, you have probably experienced having to stay home from work or school, because you were too sick to go; incidently, I have yet to meet someone who has a cold or the flu tell me they are having the time of their lives and enjoying every minute of it! Or, you may have been hurt in an accident and were forced to give up activities you loved for weeks or even months; so, you know how stressful, depressing and frustrating being unable to do what you want to do can be!

Now, when I refer to being sick, I am not talking about feeling just a little "under the weather" or just not "up to" going to work that day. I am talking about being so sick you can barely sit up or talk, having a fever that makes every muscle ache and your bones feel like they are being crushed. Then, when you try to get up to go to the bathroom, your head pounds, your body feels like it weighs a ton and you become dizzy and nauseous.

Just imagine feeling that way every single day, week after week and year after year. True, some chronic illness sufferers have a few "good days" in between, but many do not have any at all! So, if you see them out and smiling, does that mean they are having a "good day?" Not necessarily! Many times they cannot wait for a "good day" to get out, because they do not have them; thus, they make the sacrifice, sitting there in horrible agony and knowing they will pay dearly for it later!

No human being can be at peace with being sick day in and day out! In fact, most people become very frustrated and impatient after just a few hours; then, if it lasts a few days, they become panicked and angry about missing work, school or other activities; next, they become depressed and act like a week out of their busy lives is the end of the world! Yet, they often treat their loved ones like losing months and years out of their lives is no big deal! So, why would you expect your loved one to be happy with losing years of their lives, when you cannot stand to even lose a few days?

It is true, you will never fully comprehend what it is like to be chronically ill, with all of the loss and pain it poses. You will never know what it is like to feel horrible every day and you will never have a grasp at what it is like to watch your lifetime dreams come crashing down forever. So, stop using the excuse that you do not have understanding and start focusing on whether or not you have compassion!


In all, your loved one just wants you see their courage in enduring a life of feeling sick, achy and exhausted all of the time; and, you have the capacity to know you would not want to feel this way every day yourself! You know how horrible it is to be sick and forced to put your life on hold for a while, so why don't you tell them how amazed you are at their strength and perseverance!


It Seems like I Am Always Saying The Wrong Thing!

What can sometimes be even harder to bear than the illness itself, is feeling alone in the daily struggle and mourning of lifelong dreams. As pieces of oneself die off bit by bit, isolation consumes them when others refuse to affirm their pain. By repeatedly trying to "cheer them up" and make them see the "bright side" you are not validating their pain, but instead saying, "I don't want to hear the truth" or "your losses don't matter." On the other hand, if you acknowledge their losses, they will no longer be compelled to gain your belief by having to explain their situation over and over again.

Resist the temptation to make a visual diagnosis by saying, "gee, you look like you're feeling good today" or "hey, you must be doing well." They may look like they are feeling well, because there is joy in their face from seeing you; however, your comment will only make them realize they are alone in their battle, since you are evidently unaware of their insurmountable hurdles.

In other words, by rebutting their answers with, "But you LOOK good," your friend really hears, "But, I don't believe you, because you look fine to me." Instead try, "I am so glad to see you," "wow, I can't imagine what you go through, you are amazing!" "you look nice today," or "how can I pray for you?"

Encourage your loved one by affirming your trust in them, loving them and showing them that they are still just as valuable to you even if they can no longer do the things they used to do; your willingness to acknowledge their losses will give them the strength and positive attitude they need to fight the illness, instead of wasting their energy fighting with you to believe. They are not seeking your pity or sympathy, they simply want your compassion; some will need your help, just listen, they will tell you how.

We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.


"Learn To See With Your Ears!"

[ 06-08-2009, 12:43 PM: Message edited by: Melanie Reber ]

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SentByHim
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Thank You for your post. I sent it to a few people who could bennifit from reading it.

I get so frustrated from hearing "but you look ok".

It summed it up so eloqueloently.

Sent


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Lymetoo
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Yep! I think I printed this out a long time ago....and of course, I have no idea where I put it! So thanks, Melanie! Gee, you look nice today!

------------------
oops!
Lymetutu


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SunRa
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thanks Melanie! you posted this at the perfect time - just after a frustrating conversation with someone about how I'm "giving in" and letting this illness take over me....b/c after all, I LOOK fine!!! arrrggghhhhhhh.....wow, I cant believe the timing of this....thank you!!


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arg82
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Thanks for posting this. I can't get the link to work, though. It says it can't find the url. Is it just me?

--Annie

------------------
"I'd run away
But there is nowhere to go
So I'll stand and fight
And hope and pray
That the best is yet to come
And we ain't seen nothing yet."
--Tracy Chapman


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frenchbraid
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Hi Melanie,

Thank you so much for posting this! I just had a frustrating conversation with my sister about my family and our battle with Lyme. I am going to send this to her right now!

frenchbraid

------------------
Stay positive. Smile. People care.


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Lishs mom
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Thanks Melanie-

PS:
And I WILL keep inviting you till your well enough to take me up.


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Melanie Reber
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Yes...I thought this was particularly appropos for what we ALL experience on a daily basis with LD.

The thanks should actually go to Lightfoot for distributing this article to our Colorado Support System...THANKS to YOU my dear friend!

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]


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rosesisland2000
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up
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krich5000
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Hi Melanie,
That was really good. I'm feeling so discouraged today. I really thought I had this thing licked. I'm tired and cranky and foggy. I felt so much better for weeks because of the nutrtional product I was taking and, now, today, I feel yucky. I'll stay with it but today I am very unhappy. Thanks for letting me know I'm not alone.
Kathy

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aaronkatie
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As always melanie, thanks for the great info - i would give it to certain people but then maybe i'll just pin it on me??

Yes I will go lie down, melanie.

love,
NE


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rosesisland2000
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Melanie, I have given this to my mother, aunt and a great aunt...they are just beginning to understand this...

reading this, my aunt asked if I had written it...I have written alot of letters to Editors throughout the years, not on the subject of lyme or anything like that. But, when she asked me that, I told her I could've written that as it expressed exactily how I felt.

Again, thanks for bringing this to our attention and getting the word out.

Funny, how when I was sicker and gained alot of weight from Paxil, the evil drug, that folks thought I looked healthy.

Now, that all that weight is gone and then some, folks are saying that I now look sick...boy, do they have that wrong.

I've always had an disdainment to "fat" folks, thought they were lazy, unclean, etc. My daughter reminded me when we were out to eat the other night when I whispered something about a woman being at the buffet that was about 300lbs, that she "could" be sick. It really put things into prespective for me.

Now, I have to think twice.

Rosemary


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Melanie Reber
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Miss Rosemary-

You have raised one smart and compassionate daughter. Take a bow.


NE-

Look for a package of safety pins in your Christmas stocking! (now, get back to bed)


Kathy-

Hoping that the CSS and LymeNet will provide you a little shelter from the storm...know that you are never alone.

------------------
C O L O R A D O * S U P P O R T * S Y S T E M
[email protected]


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gwen37
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bringing this up for those who might need it.
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cbb
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With so many new members, this needs to be readily available.

Thanks again, Melanie!!


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kam
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I saw this post via scanning another post.

I just ordered a booklet called.."But You Don't Look Sick or But, You Look Good.

It was through IDA.

When I am functioning better, I will do the research and post the web site.

I have a habit of reading a post and then loosing it so I wanted to get this to the top.

Perhaps someone who is functioning better will come along and know what I am talking aobut and post the information.


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Magdalena
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Kam,

I think this may be the link to which you are referring:

This article is Part One of the 48 page booklet,

"But You LOOK Good: A Guide to Understanding and Encouraging People Living with Chronic, Debilitating Illness and Pain!"
http://www.myida.org/lookgood.htm

Maggie


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kam
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That's it Maggie. Thanks
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bg
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Maggie, this is another good one that needs to be copied to TINCUP's NEWBIE post.

It sums up how we all feel. Thanks for posting. Betty G., Iowa


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JillF
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I found this months ago and sent it to my family, my inlaws, my friends, etc

It helped some understand more where I'm coming from. Unfortunately, my own family pretty much laughed it off though...


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AmandaPI
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Thanks for this great post.

I just sent it to some family and friends.

I felt like you were speaking for me and it gave me the courage to reach out and let others know what I am going through.


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millymollymandy
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Just read this via another post and thought it was so good it needed bringing back. Just to add to it; I spoke to my mum on the phone earlier and I'm afraid that I was honest when she asked how I was and I told her that my knees were really hurting and I was tired. Her response was 'Oh, for Gods sake just ignore it!' I stopped myself from saying 'Oh silly me, if only I'd known a cure was that simple! So I just ignore it and it goes away, huh?'.....
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perplexed
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Thanks so much Melanie for this post..it came at a great time. I am going to foward it to all 4 of my adult children who think I like attention. A few others are on my fowarding list also.

I always hear..."But, you do not look sick." Folks just do not seem to get it. Maybe when I finally get my cane because Lyme has been destroying my eye sight and balance, someone will believe me.

Thanks again and this would indeed be a good site for newbies.

Hugs....Jean


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Melanie Reber
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Popping this back up for those in need. [Smile]
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bettyg
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I'm copying this thread and will put on TREEPATROL'S NEWBIE LINKS as I suggested in 2004; noticed no one had done this.

This is too good an article to lose; right? [Smile]

Melanie, how about changing the topic title to what it is really about?

"But you LOOK good! Wrong thing to say to a person with CHRONIC ILLNESS." now you have everyone's attention. Thanks for your consideration Melanie.

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stella marie
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JIllF & millymolly,

Wow I'm not alone.....my mother laughed the other day while stating how 'funny' [Frown] it was that a family pet and I had the same problem, Lyme.

[ 21. March 2006, 08:32 PM: Message edited by: stella marie ]

--------------------
Stella Marie

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hopeful123
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thanks for posting this...i consider myself very lucky to be able to work. this article reminded once again how much pain some lyme sufferers have on a daily basis.

i have some pain and more when i herx, but not to the point that i can't get out of bed because of it.

most worst symptoms have been cognitive and on top of the ptsd i already have, it's a struggle to know which illness is causing what symptom.

as i get better somewhat cognitively (some days more than somewhat) i remember what i used to be like. couldn't even remember how i used to function except that i couldn't do much except hold onto a modestly paying desk job.

now i recall what life was like pre-lyme and that some of that will not return, and some will.

the worst days i can remember were long, long ago when in spite of meds and therapy, i wasn't getting through major depressions. someone who was and is a psychoanalyst said something to me like we are so lucky to be alive. i could hardly stand up and go out and talk to people at all. yes, i can see now, how we are lucky to be alive, but that's not what you say to someone who is struggling desperately to stay afloat, hold onto a job and marriage and take care of two children.

i felt ashamed of expressing ever so briefly in fact, my pain. i felt silenced and shamed and guilty of being ungrateful for life itself.

other people suggested vitamins or change of diet. that was hurtful, but not shaming.

it's very sad that i was in therapy with an a**hole who was very inexperienced with child abuse and so wasn't getting help. after years of this, with no meds really helping much, i finally got good help and started to get better.

all this to say that i know chronic illness of a different kind and how isolating and shameful it can be.

i am truly grateful today that i have gotten to the point where what people do or do not say in support of me doesn't devastate me the way it once did when i was so terribly depressed.

thanks for listening and thanks again for the article.

--------------------
some days you're the bug, some days you're the windshield  -

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5dana8
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Melanie
you really did a perfect job in putting to word what it is like.


Thank you

--------------------
5dana8

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Melanie Reber
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Hey Dana,

I certainly can't take credit for writing this. It was a link that was sent to me a very long time ago through our Colorado Support System.

I'm pleased you found it helpful.


Hey Betty,

I think I will keep the title just the way it is. IMO it fits the intent of my post.

M

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Melanie Reber
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Up for Todd... [Smile]
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bejoy
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I've had three doctors tell me I look too good to be really sick, one an ID duck, one an ER neighbor, and one in family practice.

It wouldn't hurt to send this around to the professionals too.

--------------------
bejoy!

"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

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Melanie Reber
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Up for the new members...
Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
Starfall1969
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This is a great post.

I don't think I'm to the chronic point yet, and hope I never get there, but I can still relate to people telling me I don't look sick, and that I look great after losing all the weight I did.

(Rosemary--I have a friend who has been around 300 pounds for YEARS. She has tried every weight loss program, been to doctors, and still can't lose.

She has some kind of physical issue, but i can't remember what it is)

I'm really struggling now because my IgeneX tests came back saying I'm negative for Lyme and babs (I have one positive band and one IND band on each test for Lyme),

so now my husband is questioning the dx.

I still feel like crap most days, and I have days with the air hunger and chest pain that I'm sure I'm going to just fall over dead of a heart attack or something,

but I push through and do what needs to be done

(when you have a 2 year old and a 5 year old, you don't have much choice, although they don't get to the playground much).

Anyway, I'm rambling now. Thanks for the post.

Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
buckfever
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I can't beieve I never saw this thread before , I really wish I had as it says everything so well ! I just e-mailed it to a very important person that just leaft my life recently as being around me was to hard for her.

Sometimes the people closest to us , don't realise what we are going through and don't even believe us when we tell them . If they only knew how a little compassion could sometimes make all the difference to us!

Anyway , thanks for the eye-opening post , maybe some of you can show it to your nearest and dearest to help them understand !

I wish I had !

Posts: 97 | From West Chester ,Pa. | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
Amy C
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I don't know where this originated at but I have sent this to people before. It's really well worded!

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Melanie Reber
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Amy, I never really tried to find out who wrote this until now, but you got me thinking... and you are correct. The author should be listed here.

So, I just did a search and found her!
It is by Sherri Connell, and here is a site where one can order her articles in print form:

http://www.restministries.org/comfortzone/item27.htm

"But You LOOK Good: A Guide to Understanding and Encouraging People with Chronic, Debilitating Illness and Pain!

Sherri put her three most popular articles together, to create this comprehensive, 44-page guide to understanding debilitating illness. The format makes it valuable to your loved ones, as it is bound with an attractive, sturdy cover, so your friends and family will be excited to read it!

This booklet is a convenient, informative way to educate loved ones about what people with chronic, debilitating illness and pain struggle with, fight for and need from their friends and family. It is easy to read, gives practical ideas on how loved ones can be supportive and is not too long for readers to lose interest!"

Starfall, hang in there and follow your own intuition. You need to get well for those precious kiddos.

Buckfever, so pleased you were able to send this to others to help them understand.

Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
Keebler
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-

Melanie,

You always find such great articles and links. Thanks. Yes, that is very well written.

-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Melanie Reber
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Aw... thanks Miss K! This was actually passed on to me from my great friend and amazing CO advocate Lightfoot. [Smile]
Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
Amy C
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Awesome! Thanks Melanie!!

--------------------
My lyme disease blog:
http://lymetimes3.blogspot.com/
One BIG Lyme family!
I tested CDC + 10/08
My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too)

Posts: 470 | From Painesville, Ohio | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
toby67
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It says it so well..Thanks for posting it. i'm sending this to my ex, who is fighting me over getting our kids treated.

He told me my symptoms were always so "convienent", and now his doctor told him our kids looked too healthy to have much of anything going on either.

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Fran_40
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Wow...I have been thinking this same thing for

quite a long time...even before I knew that I had

lyme disease...I just wanted acceptance for who

I am...nobody judging me...no one thinking it's

all in my head. I don't want to go to social

gatherings anymore because I don't want to

explain. I don't want to be asked, How are you?

and say to them "fine" and then there be a dead

silence. If they only knew what I am going

through. I always said that for the loved one's

in my life, I just want them to wear my shoe for

a few hours to see what it's like to be me. Then,

I cannot be judged unfairly. I feel alone in my

own world here, not fully understood. I know

that they say things behind my back, it's all a

big mystery to them. They don't even have to say

it with words, it's written on their faces when

they look at me. Well, Thanks for this post. I

really wish I could send it to everyone, and hope

that they'd really digest this, and become more

compassionate. [Frown]

Posts: 72 | From South Jersey | Registered: May 2009  |  IP: Logged | Report this post to a Moderator
TerryK
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^
Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
BHealthyNow
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Thank you Terry for bumping this. My family NEEDS this post, and I emphasized the part about wasting my energy trying to make them believe me.

Although I am now convinced that I have Lyme after my positive IgM, I told them regardless of the dx, they need to understand what this is like to me.

I hurt. And I'm not exaggerating. As I've said to others this week, I've had a bad enough year as it is (with my home burning down), why in the heck would I invent Lyme Disease symptoms?

--------------------
Lyme, Bart, possible Babs
Currently on IV Doxy, Bactrim, Zithromax, Nystatin, Mepron
Been on nearly every antibiotic since 10/09

About 60% improvement. Dizziness, air hunger remain.
http://lemonandlyme.blogspot.com

Posts: 333 | From Boise | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
Tincup
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Want folks to know how it feels to be you?

I believe this is my favorite one...

http://www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

Posts: 20352 | From The Moon | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
Melodymaker
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Thanks Melanie for your post.

Thanks also to Tincup for the spoon theory. Loved it!

--------------------
Wishing You Showers Of Blessings!
Lyme since Fall 1983 = Diagnosed Summer 2008
IV Rocephin 7 weeks Stopped due to drug fever
Now doxycycline
"For I know the plans I have for you...plans to give you hope and a future." Jeremiah 29:11

Posts: 421 | From Sunny South | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Melanie Reber
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You are each so very welcome. Yes, the Spoon Theory is wonderful too, thanks for linking it here. [Wink]
Posts: 7052 | From Colorado | Registered: Mar 2003  |  IP: Logged | Report this post to a Moderator
   

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