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Joined: Apr 2008
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COPING with CHRONIC ILLNESS
FAMILY
FRIENDS
FAITH
FORGET


F A M I L Y
� Acknowledge our feelings, not only to yourself, but to others.
� Recognize that being upset about having a chronic illness is normal.
� Take time to ventilate these feelings and help those around you who care to understand what your feelings are and how they fluctuate.
� Start with your family members early on.
� Maintain intimacy with your spouse.
� Remember, family members are also affected by a chronic illness within the family unit.
� They can help if they are aware of the impact the illness is having on you, and can't help if you don't lean on them a bit.
� Family members are often called upon to assist in the patient�s daily living activities, such as administering medications, applying support devices, assisting in transportation or even simply providing company and being there for you during the bad times.
� They can best help if they understand how you are affected by the condition.
� Additionally, you will need to understand how your family members feel about your condition and how it is affecting them.
F R I E N D S
� Enjoy our friends above all!
� That�s what they�re for in part, as are we.
� They also can come in very handy as a source of moral support during difficult periods.
� Sometimes, it can be very refreshing to review your home situation with an outsider in whom you can confide rather than a closer family member.
� Support comes in all kinds of packages and you never know who�s going to appreciate our condition.
� Friends too, can occasionally be called upon to be caregivers and help in many other ways.
� Make new friends and consider interactive support groups.
� These can be found online and in your community.
� Access to further information and tips can come from national organizations, such as the Lupus Foundation of America (LFA), BC Lupus Society or Lupus Canada.
� These groups have their primary goal, to help people like us.
F A I T H
� This tip means different things for different people.
� Search your own faith amd feelings for inspiration and direction.
� Reflect on who you are.
� Look to the leaders of your community for guidance and support as they have experience in relating to many people with chronic diseases and in offering helpful consolation.
� Also, consider looking into what opportunities might exist within your local community for group support,
in order to both give and take in local support groups.
� Sometimes, these activities can open the doors to completely new ways to look at yourself and your situation and provide outlets otherwise unknown.
F O R G E T T I N G !
� Learn all you feel you need to know about your condition.
� Hear what your healthcare professionals are saying and don't forget any of it but don't rehash it all the time with yourself or your family members; no one else will forget your illness; although it will help you if you do forget, while having fun out socializing, shopping, dining or just playing.
� Become familiar with your medication requirements, the monitoring needs of your illness and medications, and warning signs and triggers of problems.
� Then, take regular time away from your illness mentally speaking, and emphasize the capabilities that you do have while spending time having fun, however you define it, all the while in 'forget mode'.
� As much as you can, attempt to live as if you don't have an illness;
not forgetting nor denying, but just not dwelling.
� Eating a balanced diet and taking time to relax can rejuvenate you, giving energy otherwise unfound.
� Do something special (or a number of somethings) regularly for yourself.
� This might be exercising, yoga, reading, helping at a community group, going out for lunch and a matinee once a month or even watching leaves fall from a tree.
� Reserve time for yourself and use it in a positive and special way.
� You will be in optimal condition to face the challenges of your illness if you've refreshed yourself.
� Developing a positive attitude does help you to motivate yourself.
� Again, a positive attitude does not mean denying or even forgetting that you have a chronic illness.
� It simply means not focusing on the negative aspects of your illness all of the time and learning to minimize and not constantly emphasizing the bothersome features of your disease.
� If coping still remains too difficult, then you should perhaps let your doctor know your feelings.
� There are many options that are available to you that you can access through the assistance of your doctor or caregiver in the line of counselling, anti depressant meds and support groups..

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Joined: Aug 2008
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How many debilitating flare ups do you get a month or how many days does it usually last?


Leslie R.

For God so loved the world,
that he gave his only begotten Son,
that whosoever believeth in him
should not perish,
but have everlasting life.

John 3:16
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I have cronic pain and hiv &hepc how do you get doctors to stop abusing you because you use pain medications

Joined: Dec 2008
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The fact is, there are so many of us out there who hurt every day, from one disease or another, that if I were a doctor I'd be extremely leery of handing out prescriptions for pain without some supporting bloodwork or other symptoms to justify doing so. I have lupus/fibromyalgia, and my NP knows me well, she knows that I will not abuse my medications, and because she has seen evidence over the past 3 years that I am deteriorating and that I am careful with my Darvocet and Flexeril, she does everything she can to keep me comfortable so I won't have to suffer chronic pain.

If you are being abused by a doctor, you need to report them to the proper authorities. BUT...if you only *feel* as though you are being abused because you've been denied refills of controlled pain medication, it's time for you to stop feeling sorry for yourself and have a discussion with your doctors. They may not know the extent of your pain, and if so they need to know this in order to treat you properly. If your health care providers feel as though you might be on the road to prescription abuse, they should tell you in a non-judgmental way so that you can discuss alternative forms of treatment with them.

It's all about communication.

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Edited by management for TOS violations

Last edited by Jeanne Daigle; 12/22/08 03:17 PM.
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I wrote a post in the Journals forum about coping with chronic pain. I wonder if the system'll let me post a link, since it's to a place right on the forums... hey, let's go 4 it.

BellaOnline ALERT: Raw URLs are not allowed in these forums for security reasons. Please use UBB code. If you don't know how to do UBB code just post here for help - we will help out!


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OK. Help.

I don't even know what UBB code IS!

I was posting a link to another forum right here.


Be Well,
Doxi
Founder & Chief Whiner
S.N.E.R.T.s
Survivors of Nearly Every Rotten Thing

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