Caregiver support

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Hi, . I don't think I've already greeted you, but if so, hi again! I don't know how things are going for your family, but thought I would reprint this info for anyone who could use it. , don't be afraid to ask any questions or express any emotions here. For some, this is the only place they feel they can let go. Chronic illness takes a toll on the loved ones & caregivers also. There are some excellent online resources for caregivers; I'm sure you can access the info without being a US citizen; Australia might have something similar.The National Family Caregivers Assn. http://www.nfcacares.org/. The U.S. govt. caregivers site http://www.usa.gov/Citizen/Topics/Health/caregivers.shtml

A great source for information & support is FSR (Foundation for Sarcoidosis Research). They have a forum called Inspire; this is a quote that I think should be our mantra: It seems like this will be a life long calling: read, ask, advocate . Sharon from Inspire forum I was going to post one of our links on 10 resolutions for people with chronic pain/illness, but the website is gone. However, I did find the original 10 resolutions on the writer's blog, which is a very interesting site in itself. He is a psychologist focusing on mindfulness, which has helped me considerably with my chronic back pain. Anyway, here is the post about the 10 resolutions, along with his link (Warning: it's pretty long!). 10 Resolutions for managing chronic pain or illness

LIVING WITH CHRONIC CONDITIONS: Beyond Survival.by Grady, Ph.D.“There is nothing more we can do; you will just have to learn to live with it”. This is the message heard by many people suffering a chronic condition – chronic illness or pain. Medical treatment has not fully resolved the problem. The patient’s question remains: “But HOW do I live with this?”The answers are not easy, but they exist. As people learn to adjust to a new life, priorities often change, and some old attitudes and habits will shift. Meanwhile, learning a set of well-understood coping strategies makes a chronic condition manageable. Life can be rewarding again.Recognizing the various problems that come with a chronic diagnosis is a start for the patient and their caregivers. While some of this depends on the condition, there are common emotional, behavioural, social, physical issues facing people with chronic pain or illness. These are all interconnected.Mood changes, such as depression, anxiety, or anger result from disappointed hopes for a cure, difficulties with medical systems or insurance, loss of ability to do valued activities in work, sports, hobbies, or family life. Some people go through a stage of grieving the person they were and the life they had. Behaviour and social changes that go with this might be withdrawing socially and becoming less active.Some people become more dependent; others insist on trying to do things the way they used to, regardless. It can be tough on everyone, and families usually feel some stress. A spouse may have to take on much more of the family’s responsibilites and chores, while also providing practical and emotional support for an ill partner. Marital strain may result.Physical changes result from the condition, and also from the changes in behaviour and mood. These often involve sleep problems, weight change (more or less), fatigue, loss of strength, flexibility and endurance. Medication side-effects also play a role in physical changes.Clearly, learning to “live with it” involves much more than just managing symptoms. The condition is a rock dropped in a pool of water. Ripples wash across the pond, and nothing remains the same.The person who is ready to learn to “live with it” will be helped by making positive decisions about themselves, their life, and their relationship with the condition. Here are some suggestions – ten resolutions – that can help people learning to cope with their changed lives. Those who make these resolutions their own stand a good chance of thriving, not just surviving.

10 Resolutions for people managing chronic pain or illness:

1. RECOGNITION: I realize that my condition has not been completely cured or resolved by medical treatment, or the force of my will, by waiting, other sources of help, or by deciding it’s not important. I am prepared to recognize this and move in a new direction.2. POSITIVE APPROACH: I recognize that I need a positive relationship with my body and symptoms. I am learning positive ways to live with this condition.3. LETTING GO: I let go of parts of my past life that are over. I may grieve what is lost, but I am committed to living well with what is.4. SELF-ACCEPTANCE: I accept myself and forgive myself for having had difficulties. I recognize that I am human, and have human limitations like everyone.5. BUILDING RELATIONSHIPS: I build or heal my relationships with others.6. NO BLAME: I forgive anyone I have blamed for my condition or for mistreatment.7. RECOGNIZING HABITS: I acknowledge any old habits that do not serve me or my condition, and am willing to develop new, healthier ones.8. ACKNOWLEDGING RESISTANCE: I acknowledge ways I am held back – by myself, by others, by fear, or by reinforcement for staying where I am.9. INDEPENDENCE: I understand how I can become dependent in unhealthy ways — on people, on medications, drugs, alcohol, on organizations, on objects, on ideas. I am willing to release these things and regain my power and control over my life10. TAKING IT FORWARD: I am ready to make positive choices and to see them through. I am open to new ideas and ways of living. When I have made these changes part of my life, I can also help others.

Grady, Ph.D. is a registered psychologist in , BC who has been working with people with chronic health problems since 1992.last edit: 12 June 2008 http://briangrady.wordpress.com/

Ramblin' RoseCo-owner/Moderator A merry heart is good medicine. Proverbs 17:22

To: Neurosarcoidosis From: melp4@...Date: Wed, 27 Apr 2011 00:09:08 -0700Subject: Re: New to Neurosarcoidocis

Hello Everyone,

Thank you so very much for your kind messages and words of support. The information you have given me has been a great help and I have passed this onto my husband. He is currently taking Gabapentin and the dosage went up to 6 tablets a day. He's also taking Imuran and Prednisone. Unfortunately as he's not very active he got blood clots and is now on Warfarin. He has an appointment next week with his neurologist so I will now be able to tell him of some of the other medications that you have been prescribed. We live in Melbourne Australia so I'm not sure if the medicine is the same just with a different name.

When my Hubby was diagnosed we were telling his Mum and she told us that she was diagnosed with sarcoid around 18 years ago as tests found a small lump in her lungs. She was told of all the symptoms she could have and fortunately for her she had none and is fine now to this day. I was wondering does anyone else have any family members that have been diagnosed with sarcoid?

Thank you again and I am so happy to have found this wonderful support group