Friday, May 29, 2009
gifted me with the most beautiful soft alpaca knit cowl that she lovingly handknit!! I LOVE it. FOr us who are ill and need to keep parts warm this is perfect for protecting my face, head and neck and so soft can be worn inside or out
Friday, May 8, 2009
Sing along with me
Get free patterns from Knitpicks HERE
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.
“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
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!
THANK YOU FOR CARING ENOUGH TO READ OUR POSTS!
- Grocery shopping
- Meal preparation
- House cleaning
- Car maintenance
- Getting recycle containers down to curbside
- Running miscellaneous errands
- Watering Plants
- Helping with the yard
- Drive you to an appointment
- Picking up a child after school or practice
- Go with daughter or son to school event
Other Practical Help You can do:
- Help plan the week
- Help Organize tasks
- Calling job to work out details
- Look through mail and clear clutter
- Help with taxes
- Write thank you notes
- Help you plan a birthday party
- Arrange for small dinner party for you and spouse/family
- Organize medical information
- Search internet for information on illness
- Attend doctor appointments
- Help process medical treatments
- Help with insurance forms
- Set up email communications to friends and family
Visit Family Caregiver Alliance for support-givers.
- Pray with you
- Lend you encouraging and spiritual DVDs, CDs or books
- Take you out for coffee, to church, or to see friends or family
- Send you encouraging and spiritual cards
- Take you on an outing to a place you enjoy
- Remind you regularly that they care
- Even if it’s hard to understand how she can hurt so badly, yet look so “normal”, please believe her when she says she is hurting. She really is.
- Volunteer to do some research on the internet for him about the illness.
- Put meals in disposable containers and include a note telling her she doesn’t need to return the containers.
- Invite her to do spontaneous things, like go to the park, or have a picnic. She may be more able to participate since she knows it’s a good day or a bad day.
- Validate his illness by asking him if he’d be willing to encourage someone else who is struggling with pain.
- Take your friend’s dog out for a walk.
- Never minimize his illness by saying things such as, “I’m sure it’s all going to turn out just fine.” It makes him feel that he can’t be real with you about his fears, and he needs to be able to express them.
- Ask her if she’d like you to go to an appointment with her, just for the company.
- Remember anniversaries, such as the when he was diagnosed or when he had major surgery. Just a phone call saying your remembered him is enough.
- Ask him, “What do you wish other people knew about TN?”
- Tell her, “I made some soup and have extra - when can I bring some over?“
- Treat your friend to a gift of movie rentals (such as Netflix) via mail. ($7 to $15 a month).
- Stormy days often cause pain; drop off some bubble bath.
- Buy him a microwaveable heat pack.
- Ask him if he’d be interested in writing something for your community or church newsletter about what it’s like to live with a pain-related illness.
- Ask, “I’m going to Costco tomorrow - what can I pick up for you?”
- For a creative gift, provide holiday-themed paper plates and napkins.
- Don’t tease him, ever, about his illness.
- Offer to drive him to an event or activity which he needs to attend. Ill people often don’t attend events for fear that they will be in too much pain or become too tired to drive home.
- When you are out together, be her advocate if needed, to make sure she can receive proper seating or assistance. Please be tactful, and don’t call attention to her needlessly.
- Say, “While you’re in the hospital, I’ll pick up your mail.”
- Find out if you can pick up medications or anything else after surgery, to save the family a trip out.
- Be careful not to try to give lots of opinions about how to treat her illness. If she asks for your advice, give it very carefully.
- Encourage her that it’s okay to not know if she’s making the “best” or “right” decision(s). There are no guarantees and she’ll appreciate your supporting her.
- Don’t tell him about your friend’s cousin’s boyfriend’s best friend who had the same diagnosis and was cured through - unless you have truly useful information to share.
- Find out what his favorite author is and go the library and check out books for him.
- Say to her, “I know you must need to vent once in a while. I’m available.”
- Send her jokes via email - but only if they are funny - and never ask her to “pass them on.”
- Don’t make your family member the center of your life, no matter how much pain he is in. You will both wind up worse for it, if you do.
- If he has a disabled parking tag, don’t feel so excited about using it. If he’s having a good day, he might feel well enough to walk, and enjoy not having to park in the “handicapped space.” Don’t whine about your having to walk farther.
- Buy her some note cards and stamps. They always come in handy.
- Accept that his pain may not go away. If he’s accepting it, don’t tell him the illness is winning, and he’s giving into it.
- Don’t say, “Let me know if there’s anything I can do.” People will rarely say, “Well, yes! Will you clean my house?” Offer something you are willing to do.
- Buy a magazine subscription for him.
- Give her a hand or a foot massage. Touch is an important part of healing, but normal places of massage may hurt her, such as her back or head.
- Hang up a birdfeeder where your friend can easily refill it.
- Understand that you don’t need to know all the details about her illness in order to be helpful.
- Ask her if you can help her make or return phone calls.
- Go to an event he has to miss and take photos, perhaps even getting friends to write him notes. Then, take them over to his house and have a “mini event” with him.
- Buy him a hands-free head set for his phone.
- Don’t ask when she is in pain, “What’s causing it?” She doesn’t know. Instead ask, “What can I do for you?”
- Bring him small gifts and say, “These reminded me of the time we. . .”
- If she’s not getting out much, ask her what she’s missing most. See how you might bring part of it to her, if possible.
- Tell him about your life, and don’t feel your struggles aren’t worth sharing. They are. He still wants to be “in the game of life” and be a support to you too.
- Write her scriptures that you have depended upon in difficult times, using bright markers.
- Instead of saying, “I’ll pray for you,” ask, “I’d like to pray for you right now. May I?”
- Call her up on the phone and sing her a silly song.
- Give her extra help during Thanksgiving or Christmas. As you are baking your Turkey or Christmas cookies, bake her extra. It will lighten her load.
- Go visit for no reason at all.
- Be someone who cares and doesn’t give up in the hard times - it’s the right thing to do. Expect the unexpected; look for the miraculous; be the keeper of the faith.
All Kinds of Head and Facial Pain
How Friends & Family Can Help a Person In Pain
Rest Ministries and Hope Keepers
Post your great site as you comment on this post. God keep you all, Grace
Thursday, May 7, 2009
Let those of us who sit in suffering be encouraged today.