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Friday, May 8, 2009

TNA & What pain patients want YOU to know!

The Trigeminal Neuralgia Association TNA

TNA is a 501(c)(3) non-profit voluntary health organization whose mission is to serve patients worldwide who suffer from neuropathic face pain (including TN), their families, and the physicians, dentists and healthcare providers who treat them.

Gone are the days when there was little or no access to help. You are never alone. TNA exists to help you. Access their website 24 hours a day, or call the patient representative during working hours at 1-800.929.3608.

TNA will provide you with the latest information and research on facial pain, and will help you connect with national and local support and physician referrals.

Local Support Groups

Being with people who have some understanding of what you and your family are living with is a tremendously positive step in your good health. If you contact TNA, you may find a TNA-sponsored support group already exists in your area; or you may want to start one yourself. Also, your church or community may have a support group for people with chronic illnesses.

“When you do nothing, you feel overwhelmed and powerless. But when you get involved, you feel the sense of hope and accomplishment that comes from knowing you are working to make things better.”--Pauline R. Kezer, chronic illness counselor

Resources for Friends and Family

Thank you for being involved in our lives. Illness and Pain are bearable with friends and families like you!
Here is what people with facial pain want you to know:
Please, don’t try to “fix this” for us. We don’t need you to. We just need you to care about us and let us know that we are loved by you.

Please don’t feel discouraged if we don’t become completely “well.” We are confused and scared much of the time, however, we desire to live as well as we can, despite how sick or how much pain we must bear. Please don’t give up on us, or we might too.

Please stay in touch with us! Send us a note, an e-mail, or call us. We may not get out so much, however, we sure need to be in communication with you.

Please acknowledge that we are ill, but don’t press us for a full report unless you want to really hear our complicated life.. Rather than asking the standard, “How are you?” question, please say, “It’s good to see you here.” If you really want to engage with us, ask us, “What is this like for you?”

Please avoid platitudes such as, " You must not have enough faith for your healing". OR “God never gives you more than you can stand.” This doesn’t help us to accept our illness any better, and it’s likely to hurt our faith in times when we are suffering deeply..

Please don’t overlook our family members. Sometimes we get all the attention and they get very little and the pressures on them are, at times, much greater than the pressures on us.They may need a good meal and a good listener! Many are burned out!

Please help us in practical ways. Rather than say, “Please let me know what I can do to help you,” offer specific support based upon your own gifts and time allowances.

Please invite us to events and things even though we are ill. We have limited energy, but most of us still can get out and do things - we just have to plan carefully. It will really bless us if you’ll tell us that you’ll understand if we need to cancel at the last minute, tell us if we will be exposed to wind or cold, or be outside or inside if you take us somewhere new. If you ask us what kind of things might need to be done in order to make us most comfortable at the event.

Please tell us about your life, and don’t feel you can never complain about anything - because “compared to us you have nothing to complain about.” All of us have our “stuff” and we want to support you through yours. We don’t believe we have the monopoly on difficult circumstances -- we care about what you are going through too!


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