1/18/06

co-host_Debbie> I think we will get started
co-host_Debbie> I would like to welcome our special guest today Kathy.
co-host_Debbie> Kathy...I will turn our time over to you
GUEST_Kathy> Great to see everyone here today.
GUEST_Kathy> For several years, I had electrocution-type pains radiating through the right side of my head, caused by trigeminal neuralgia.
GUEST_Kathy> Talking, chewing, even receiving a gentle kiss, and brushing my teeth aggravated the pain.
GUEST_Kathy> When my husband, family, or friends hugged me, it often caused excruciating pain.
GUEST_Kathy> The people I loved the most became reluctant to touch me.
GUEST_Kathy> Fear of touch can begin a negative cycle, trapping both the people with pain as well as those who want to hug or hold them.
GUEST_Kathy> Communication is the key. Just like healthy individuals, the person with a disability wants acceptance and understanding.
GUEST_Kathy> Social isolation develops when others question the reality of an illness.
GUEST_Kathy> When an illness has no visible manifestations, some people will have difficulty understanding its symptoms and their effects.
GUEST_Kathy> Pressure to prove an illness or to explain it to friends, family, and community can contribute to further isolation.
GUEST_Kathy> As I became more isolated, the gregarious person I had always been vanished. I withdrew from others.
GUEST_Kathy> I began to look for answers to my questions and learned that invisible or hidden disabilities are sometimes viewed with speculation.
GUEST_Kathy> Questions come from people who are suffering as well from their friends, family, and others they encounter.
GUEST_Kathy> In order to understand the changes that were occurring in my life, I returned to college to work on a master's degree in rehabilitation counselling.
GUEST_Kathy> In my counselling classes, I learned that everyone with a disability or illness has a story.
GUEST_Kathy> When I grew so ill that I could no longer attend school, God gave me the message for a book, With Great Mercy, an interactive journal.
GUEST_Kathy> As the story about my spiritual journey unfolds, readers are encouraged to write about their own experience.
GUEST_Kathy> I hope you will share something today about how God's mercy has touched your life
GUEST_Kathy> bringing you through struggles
GUEST_Kathy> and helping you to overcome challenges.
GUEST_Kathy> As you can see one of my challenges today is that my copy and paste commands were experiencing glitches!
GUEST_Kathy> Have any of your experienced social isolation or fear of being touched?
Mary_Lou> Yes, I have had people hug me so hard that they hurt me.
blessed_valley> I want to say I have read your book
Margie> I am in that now
blessed_valley> and it is a story of my own life
GUEST_Kathy> How so, Blessed Valley?
blessed_valley> since childhood I have had disabilities
blessed_valley> I have had acute hearing loss that no one seems to understand
GUEST_Kathy> Lack of understanding is a gulf between people with disabilities and others
blessed_valley> in my adult life I have suffered cancer which has left me disabled
GUEST_Kathy> Mary Lou, could you tell me how you resolved the situation, being hugged so hard that it hurt?
Mary_Lou> Sure thing.
blessed_valley> though my cancer disability is visible my hearing loss is not so visible
Mary_Lou> It was someone I was meeting for the first time.
Mary_Lou> She came up to me and, upon hearing about my physical problems, wanted to give me a hug.
Mary_Lou> Later, I expressed to a friend that, if I attended that small group meeting again, I did NOT want that woman touching me! LOL!
Mary_Lou> I was prepared to simply tell the woman not to touch me.
Mary_Lou> AT the end of the meeting, as this violent hugger moved toward me, my friend leapt in front of me.
blessed_valley> some times you have too
GUEST_Kathy> Yes, I have had similar experiences, being hugged and having friends yell in my ear at the same time.
Mary_Lou> She told the woman that I could only be hugged gently and not to hurt me.
GUEST_Kathy> LOL
Mary_Lou> So I was relieved of having to explain the situation at that time.
blessed_valley> good for her
GUEST_Kathy> Yes, I agree.
Mary_Lou> I learned something though.
GUEST_Kathy> Sometimes we get weary explaining our situations over and over.
GUEST_Kathy> what did you learn?
Mary_Lou> I now tell people I would be delighted to have them hug me, but they must do it gently.
GUEST_Kathy> Good idea
Mary_Lou> And then I reach out and gently hug them so show them how to hug me.
co-host_Debbie> That's a good idea Mary Lou
Mary_Lou> And they always respond by hugging me the way I hug them.
blessed_valley> Kathy
GUEST_Kathy> Often people have a much more difficult time coping with others' disabilities when they are invisible
Mary_Lou> That way they don't feel that I don't like them and don't want them to touch me. They understand I welcome their show of affection, but it needs to be done gently.
blessed_valley> I have had ministers pray for me and hurt me in the process
GUEST_Kathy> Sometimes people are hurt when they have to be guided about expressing their feelings.
Mary_Lou> That's so true, Kathy. I hate to turn people away and make them think I don't like them.
GUEST_Kathy> These feelings are especially important when it comes to those in our family
Mary_Lou> But I find that, if you explain it to them, they listen -- usually!
GUEST_Kathy> Yes, Mary Lou, I have experienced that also
GUEST_Kathy> So many times I tried to smile at people and could not
GUEST_Kathy> I ended up looking into their eyes and producing a grimace
GUEST_Kathy> Communication is very important if we want to be understood
GUEST_Kathy> How do you communicate your desires to others?
Hagar1> I can relate to struggling with others feelings. Although my pain is not physical but emotional.
GUEST_Kathy> What works best for you regarding that communication, Hagar?
Margie> talking to people wearing glasses makes me dizzy - what to do?
Hagar1> Well It has taken me many years to first let go of my own feelings of hurt & resentment. I struggle with mood swings, bipolar & OCD
GUEST_Kathy> Yes, letting go is an important process
Hagar1> But As I came to accept myself more I came to respect not everyone can handle mental illness. Or illness in general.
GUEST_Kathy> For me, I find that communication about touch is essential. Your family and friends are probably not aware that they need to relearn your preferences.
GUEST_Kathy> That is true. It is a type of invisible disability,
GUEST_Kathy> and the fact that people cannot see the illness causes speculation
Hagar1> I have had to learn to love them where they are & help them understand their unwelcome pity or scorn are their problem not mine
GUEST_Kathy> Yes, we all want to be loved "just where we are"
GUEST_Kathy> Also regarding touch, Reach for the hand of your loved one before you begin to make your desires known.
Hagar1> It is not easy. But it is vital to staying alive. Finding wonderful ministries like this is a blessing
Margie> Can those of you who wear glasses tell me how to approach this problem?
GUEST_Kathy> Reach for the hand of your loved one before you begin to make your desires known.
blessed_valley> have you discussed this with the doctor Margie
GUEST_Kathy> I like to Discuss the types of touch that feel good to you. Then let them know what types of touch causes discomfort.
blessed_valley> it could be a time to change glasses
GUEST_Kathy> I do not wear glasses, Margie, but I had incredible pain in one of my eyes
GUEST_Kathy> I do not wear glasses, Margie, could you tell me how the glasses are causing issues for you?
blessed_valley> I was having trouble with the new car lights at one time
Mary_Lou> I wear glasses, Margie. I'd gladly take them off it somebody asked me to. I could carry on a conversation without them. You'd look a bit fuzzy to me, but that's okay.
Margie> Please - if I do not look at a person it is considered rude.
blessed_valley> my old glasses would make the blue lights hurt my eyes
blessed_valley> it cleared with new ones
GUEST_Kathy> Did that cause you to frown, blessed valley?
blessed_valley> yes
Margie> But I do not want to feel ill looking at them.
Mary_Lou> I know what you mean about looking in other people's eyes when they wear glasses. There are all kinds of reflections from the light, etc.
blessed_valley> no one wants to feel ill especially when visiting
Margie> Exactly!
Hagar1> How about standing next to them in stead of face to face
Mary_Lou> I find that if you ask people politely and pleasantly to accommodate your needs, they're usually only too glad to do something to help -- like taking off their glasses for you.
blessed_valley> do you wear glasses Margie
GUEST_Kathy> Sometime even in the midst of a crowd or while having a visitor, I have felt so lonely because people did not understand that I was in pain. What things can we ask God for to help relieve our isolation?
Margie> Pastors came for visit both with glasses 2 hours misery.
Margie> Thank you Mary Lou
Mary_Lou> I'd just explain to them how it affects you, Margie. If they need them to read a Bible passage or something, then they'd have to wear them. But otherwise, I'd think they could take them off just to chat with you or pray with you.
GUEST_Kathy> So it is the fact that people wore glasses that caused you discomfort during their hugs, Mary Lou.
Mary_Lou> No, Kathy! LOL!
Mary_Lou> You're combining my problem with Margie's!
GUEST_Kathy> Yes, I am
GUEST_Kathy> LOL
Mary_Lou> We've got several conversations gong on there.!
GUEST_Kathy> That is a good thing
Margie> lol
Mary_Lou> LOL!
GUEST_Kathy> except that I got confused
blessed_valley> I had a brother whose eye sight was so bad if he took his glasses off long he would get excruciating headaches
blessed_valley> Margie do you ever wear glasses
Mary_Lou> Well, if somebody had to keep their glasses on, the next best thing would be to situate them where lights didn't reflect off them.
Mary_Lou> Or be in a fairly dark room.
blessed_valley> yes
GUEST_Kathy> I was surprised when people did not attempt to understand my disability and even more surprised when people refused that the pain occurred.
Mary_Lou> I just think there are ways to address any problem we might have and, as Kathy says, if we communicate our needs, most people will try to be accommodating.
GUEST_Kathy> Have any of you experienced an unwillingness from others to accept your disability?
Mary_Lou> Isn't that right, Kathy? Am I understanding you?
blessed_valley> this has happened to me about my hearing loss
GUEST_Kathy> Yes, most people will be accommodating
GUEST_Kathy> But not everyone
GUEST_Kathy> Has anyone had an experience with someone who refused to understand or accept your situation>
Margie> Guess I need to be less self conscious
blessed_valley> no margie
Hagar1> yes
GUEST_Kathy> It is easy to become self-conscious
Kim> People accept my disability to a point, but as time goes on I realize that they forget.
GUEST_Kathy> which is why we often retreat to our homes
blessed_valley> it is important as kathy says to communicate
blessed_valley> I have had people pray for me that I love dearly
GUEST_Kathy> Hagar, I agree sometimes we do need to let go and be less self-conscious. Other times, we are legitimate in expecting other people to understand our situations,,, or at least accept them.
blessed_valley> but they hurt me instead of helping me
GUEST_Kathy> Insensitive and judgmental remarks are sometimes aimed at people with disabilities, even though they might be making their best efforts to have the best quality of life possible.
Kim> Blessed Valley, how do they hurt you?
blessed_valley> by forcing my neck or back to bend
GUEST_Kathy> Do you let people know they have hurt you?
blessed_valley> I have had surgery for spinal cord cancer and for neck problems
blessed_valley> I didn't these men at the time
blessed_valley> because of the nature of the service
blessed_valley> but I always worn a minister now
blessed_valley> so they do not hurt me when praying
GUEST_Kathy> It is so easy to retreat to our homes, to become isolated. Has anyone experienced spending too much time at home and becoming unwilling to leave?
Hagar1> Fortunately the quality of our life is within our ability to create with God's help
GUEST_Kathy> From the end of the earth I will cry to You, When my heart is overwhelmed; Lead me to the rock that is higher than I. Psalm 61:2
co-host_Debbie> I do that a lot Kathy

Mary_Lou> Oh, yes, It's easier to stay home and avoid all the ways people can hurt you!
blessed_valley> that is true hagar
GUEST_Kathy> Yes, it is easy to stay home so we do not have to deal with challenges outside
Bob_m> I isolate
GUEST_Kathy> Yes, Bob, I understand
Mary_Lou> While staying home may be better for us physically, it isn't so good for us emotionally, is it?
GUEST_Kathy> Makes it more difficult to go back outside again
Kim> no
Bob_m> yes
GUEST_Kathy> Emotionally, no, because we become closed-off
blessed_valley> I agree with that Mary
Hagar1> Fear is so much more handicapping than our disabilities sometimes
Bob_m> what's with that?
GUEST_Kathy> and that is when we become so self-conscious
Margie> I look so normal....people sometimes think I am using illness as an excuse to hide something else. I am homebound, which adds to their feeling this way.
GUEST_Kathy> Because we lose practice interacting with others
blessed_valley> also no interaction with others
GUEST_Kathy> Yes, looking "normal" can sometimes cause a bigger misunderstanding
Mary_Lou> I like what you said about losing practice re: interaction, Kathy. That's so true!
GUEST_Kathy> What are some things we can do to enjoy life outside our homes
GUEST_Kathy> Even if we have become accustomed to isolation?
Hagar1> Hide in the library..lol
GUEST_Kathy> Ask a friend, neighbor, or family member to take you for a short drive. This can help one maintain a sense of connection with his or her community.
Bob_m> look out window
GUEST_Kathy> You do not have to get out of the car
GUEST_Kathy> yes
blessed_valley> Kathy one thing I have found helpful is encourage others to do things we all can enjoy
GUEST_Kathy> Yes, blessed valley, I agree
GUEST_Kathy> Some resources are individual and/or group counselling, local support and church groups, and Internet support groups. Internet bulletin boards are also available.
GUEST_Kathy> We have found an important internet resource here!
Margie> My young adult daughter invites her friends over.
GUEST_Kathy> Excellent idea Margie. You interact with them?
GUEST_Kathy> Bob do you look out the window of your home?
Hagar1> Offer to have small group or individual bible study or prayer partner over to your house
Margie> Yes, as I can!
GUEST_Kathy> Excellent
Bob_m> yes
GUEST_Kathy> Plant a small indoor garden by your window. Watching the growth of a tiny indoor garden, such as arrangement of fresh spices near a kitchen window, can also provide one with a feeling of satisfaction.
Bob_m> ahh yes
GUEST_Kathy> On good weather days, it would be nice to have a spot in your yard that is comfortable.
GUEST_Kathy> A good chair, pleasant foliage around
Bob_m> I used to watch the yellow butter flies
Hagar1> Have 2 rambunctious kitties that are very spoiled & demand petting on a frequent basis!
Margie> Bob, I have a window seat. I wave at the neighbors as they slave away in their yards!!
GUEST_Kathy> That sounds marvellous
GUEST_Kathy> Yes, pets are a great way of helping us feel loved and secure.
Bob_m> smile
Mary_Lou> How about birds, Bob? Do you get a variety of those?
GUEST_Kathy> Margie, that is funny.
Bob_m> that's another thing a few birds I haven't seen
blessed_valley> I have two children with cystic fibrosis
GUEST_Kathy> Often I found myself wanting more visitors
Bob_m> a owl one time
GUEST_Kathy> But often I did not make the most of my time with them.
GUEST_Kathy> Find ways to help loved ones feel a personal connection with you. When planning time together, ask the friend or relative to bring something to share, a favorite song, an ongoing or finished project, a book, a toy, or a school project.
blessed_valley> the doctors encouraged them to talk about the things they faced with their friends
Hagar1> (((blessed valley)))) That can be a real challenge & a blessing
GUEST_Kathy> Blessed Valley, when your children visit do you share special time with them?
blessed_valley> to help overcome emotion struggles
blessed_valley> yes
Margie> Honestly, I watch the well and it teaches me a lot about how unfulfilling their lives can be.
blessed_valley> that is true Margie
blessed_valley> health can be taken for granted
Margie> If I had my health, I would not waste it pulling weeds, and hosing my drive!!!!!!!!
blessed_valley> we have learned through our disability to live our lives in a more meaningful way to the most part
GUEST_Kathy> How does God comfort you in the midst of your isolation?
Mary_Lou> LOL! That's funny, Margie!
Hagar1> praying for other people... like if I hear a news report or friend online
Mary_Lou> Good for you, blessed valley!
blessed_valley> good idea
GUEST_Kathy> Yes, praying for others, Hagar, is an excellent way to contribute spiritually to others as well as ourselves.
blessed_valley> it turns your thoughts in a different direction
GUEST_Kathy> Yes,
Margie> I smell my roses - now that is living!!!!
blessed_valley> yes margie
GUEST_Kathy> what is another way we can ask God to comfort us in our aloneness?
Hagar1> Yes that is a blessing. Sometimes what other take for granted. What I have in the past taken for granted... Margie is right. You get a new perspective on what is important
Kim> I started working in our local food cupboard and tutoring a literacy student.
GUEST_Kathy> Yes, truly taking time to smell the roses....
Kim> It takes my mind off of me.
blessed_valley> yes Kim volunteering is an excellent avenue
Margie> Kim - wonderful!
Mary_Lou> That's great, Kim!


GUEST_Kathy> Yes, and making the most of our time with others.
blessed_valley> yes
Kim> Yesterday I was quite sick and in pain, but God somehow got me through my 3 hours at the food cupboard.
Pamela> How did you get started being a tutor Kim?
Mary_Lou> I'm glad for the telephone. If I can't get out and meet people face to face, there's always the phone.
Hagar1> I am sure it sounds a bit childish.. I have a very childlike imagination. When I pray I curl up on the couch. Just let myself be in God's embrace.
GUEST_Kathy> Yes, the telephone is great.
Hagar1> It is good to volunteer online too if you can't get out.
GUEST_Kathy> For some of us though, who have difficulty speaking or hearing, the telephone can present problems.
Mary_Lou> Not childish, Hagar! Child-like! There's a difference! I think it's great!
Hagar1> thank you
blessed_valley> that is a great idea hagar
Kim> I went through training at our local library through their adult literacy program.
GUEST_Kathy> the Internet works well for others
GUEST_Kathy> Kim, an excellent way to overcome isolation.
Kim> It does help.
Margie> We cannot all be well enough to do what Kim does, but we can follow her example in giving what we have to others.
GUEST_Kathy> Also, I have found that conversational prayer, spoken aloud, can help me on the toughest days
GUEST_Kathy> Yes, Margie.
GUEST_Kathy> When we can no longer give, God is there to restore us.
GUEST_Kathy> Who will share with us something he or she asks God to do?
Pamela> Maybe someone has an idea for me. I have horses and don't ride much at all anymore because of fibromyalgia but I want to pass on to others what I've learned... a ministry.. but I don't know how to get started
GUEST_Kathy> I ask God to help me understand others better.
blessed_valley> Kathy one thing most people don't consider a disability is weight problems
Pamela> God has definitely put this on my heart so I know He will lead me but I'm also looking for counsel
GUEST_Kathy> Pamela, can you write something that will help others learn about horses?
Hagar1> There are such ministries Pamela... have one near where I live. For children with disabilities
Hagar1> check online they may have suggestions?
blessed_valley> I have asked God on numerous occasions to help others lose weight as they have requested
Margie> Pamela, I know horses are used a lot with disabled kids.
GUEST_Kathy> Yes, Blessed Valley. In fact there are some deep-seated prejudices about overweight issues.
Pamela> Exactly Hagar and yes Kathy that is a great idea
blessed_valley> yes
GUEST_Kathy> Often people who have difficulty ambulating gain weight
Hagar1> I relate to that!
blessed_valley> yes


GUEST_Kathy> And I gained quite a bit of weight from medications I took.
Pamela> I know that too.. just don't know how to begin. or who to contact for help
blessed_valley> diabetes has worked havoc on my weight
Pamela> My good friend, who also has chronic pain, has gained a lot of weight
GUEST_Kathy> I will be honest. I did not begin to lose weight until my pain left.
Pamela> and it is hard on her
blessed_valley> it is always hard on us Pam
Mary_Lou> Can you tell us about having your pain leave you, Kathy?
GUEST_Kathy> It seems that would be a good topic... what to do about gaining weight during an illness
Mary_Lou> Was it a healing from the Lord?
GUEST_Kathy> Yes,
Bob_m> I live in horse country
GUEST_Kathy> My pain left through prayer
GUEST_Kathy> yes, Mary Lou
Mary_Lou> Fantastic! Hallelujah!
GUEST_Kathy> After seven years, I was healed.
Hagar1> they are great creatures. Very sensitive
blessed_valley> can you ride them bob
GUEST_Kathy> I agree, Praise God.
Pamela> where Bob?
Alice> Pamela - would you feel up to starting a HopeKeepers Support Group? If so, you can find all the details about how to go about it on Rest Ministries. I have found that a "GREAT" avenue to be able to share what I have learned and what I live with and deal with each day/
Bob_m> haven't got near horse though
Pamela> Wow Kathy... that is wonderful
Bob_m> see them from distance
Bob_m> Ocala ,fl.
GUEST_Kathy> Yes, it is wonderful
GUEST_Kathy> I thought so Bob
GUEST_Kathy> I grew up in Ocala.
Hagar1> cool
GUEST_Kathy> And I live not far from there now
Pamela> I used to be the Thurs chat facilitator and that was a great avenue as well
blessed_valley> yes bob that is horse country
GUEST_Kathy> Bob, can you see the horses from your window?
Bob_m> yea and they ride them by
co-host_Debbie> Kathy, we have just a few minutes left. Do you have any closing comments?
GUEST_Kathy> Yes,
Pamela> aren't they beautiful
Bob_m> very neat
GUEST_Kathy> I would like to ask if anyone has a scripture that helps them deal with loneliness or isolation
blessed_valley> Proverbs 3:5 and 6
Pamela> I'm thankful for this time of refreshment and for being apart of this online family
GUEST_Kathy> This is one that I cherish:
GUEST_Kathy> For a mere moment I have forsaken you, but with great mercies, I will gather you. Isaiah 54:7
Margie> Bless you Pamela
Hagar1> Isaiah 41:10
GUEST_Kathy> So am I, Pamela
Pamela> Jer 33:3
Pamela> Call upon Me and I will answer you and I will show you great and mighty things you do not know
GUEST_Kathy> Excellent and inspiring verses
Margie> Ps. 139
blessed_valley> I also find the 23rd Psalm a real comfort
Alice> Must go -- thanks everyone. You all have been a great help to me today. May His blessings fall on all of you.
GUEST_Kathy> Bless you Alice,
GUEST_Kathy> so good to have you
Hagar1> me too Blessed Valley
Pamela> May we all cling to Jesus. He is always there for us... bye Alice
blessed_valley> bye alice
GUEST_Kathy> Does anyone else have a question for me?
co-host_Debbie> Kathy.....thank you so much for coming and sharing with us today. I have enjoyed listening to you.
Alice> My scripture -- YOU are my hiding place." I won't hide from the world -- I only hide in HIM! That makes all things possible in a situation that seems impossible. Bye now!
GUEST_Kathy> Thank you, Debbie.
Mary_Lou> Thanks so much, Kathy. You have shared some excellent information here. And I loved your handout. Thanks, too, for that!
blessed_valley> you know it is also comforting to know Jesus wept
GUEST_Kathy> Bye Alice, wonderful scripture
Kim> Thank you Kathy.
GUEST_Kathy> Yes, blessed valley, Jesus knows loneliness
GUEST_Kathy> Thank you, Kim
blessed_valley> thank you kathy
blessed_valley> I recommend her book to anyone
co-host_Debbie> Everyone is welcome to stay and chat.
GUEST_Kathy> you too, Blessed valley
Hagar1> Thank you kathy
Kim> I also loved your handout. I printed it out and will refer to it when I feel the need.
GUEST_Kathy> I can stay a little longer if anyone likes to stay
GUEST_Kathy> Thank you, Hagar,
Hagar1> yes excellent handout
GUEST_Kathy> I enjoyed chatting with you
Mary_Lou> May God continue to bless your ministry, Kathy. I have to go. But thanks again.
GUEST_Kathy> thanks so much
Mary_Lou> Good-bye, all!
co-host_Debbie> Bye Mary Lou!
GUEST_Kathy> Thanks Mary Lou, bye!
Pamela> bye Mary Lou
co-host_Debbie> I also must be going....thank you all for coming and again...thank you Kathy!!!
co-host_Debbie> God Bless each one of you!!!
blessed_valley> good bye debbie
Pamela> God bless you Debbie
blessed_valley> thanks
GUEST_Kathy> Thank you so much Debbie. I appreciate the opportunity
Pamela> and everyone... see you next week
co-host_Debbie> We are soo happy to have you...thank you again!!