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    Saturday *****3/16/2013*****
    dollbug posted:
    Morning FMily....MiMi in NC...and it is going to be a nice warm day with 70*s....OMG...I hope I can enjoy today with my granddaughter....or at least 4 hours of it...I guess we will see just how this pans son now has the *order* in hand so things just might get interesting. I am sure it is hard for some people to accept the fact that they can no longer do whatever they take a notion to do....BUT when you get the system involved....these kinds of things change into something have to abide by whatever is put in front of you...and there are choices and consequences.

    I am hoping spring is almost here....I am so ready for warmer weather.

    I did sleep ok last night and I hope each of you had a good night's rest as well.

    I was able to shop at one of the children's consignment sale yesterday...I found a few things for the grandchildren. I am still guessing what size my granddaughter is now in...she is so very tall and you can see in my photo here...I can hardly believe that she has grown so much...but then I do have to remind myself that it has been 3 years. I am anxious also to find out IF she is in school by now.

    Welcome to the new members who have joined us recently...and anyone who has returned as well. I am sure that soon each of you will find something that will help you cope does take a process with whatever you do when dealing with the wrath of the dragon....the main goal here is to find the right combination so that you can dance with the dragon, instead of draggin the dragon....(as Nana B says) also have to know that what works for one person may or may not work for you... but this is a good support group with lots of good hang in here with us and I am sure that soon things will get better for you as well.

    Vitamin sure and ask your doctor to check your Vitamin D important for a lot of people these days...low Vitamin D can cause additional pain for some people and it can also affect other illnesses as well.

    I hope everyone will have a good day....enjoy the sunshine if you have some and are able to do so. Warm sunshine makes the body feel GOOD....and this can also do wonders for the mind as well.

    That's all for now.


    My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
    franr responded:
    Good Morning Mimi
    I hope you enjoy your day with your grandaughter. Relish every moment it goes by too fast.Also enjoy the warmer weather.Itrs stil 28 degreeshere. I am doing better.More aches and pains at night.But now able to drive and do more things.The new meds are working and sleeping better. When we are well we take healthfor granted. Well hope all goes today. Will remember all of my fibro friends at Mass tomorrow. Hugs ,Fran
    rudyandirmouse responded:
    Good Saturday MiMi, Fran and all those that will follow my post.

    MiMi, I am so happy for you. I would like to be a fly on the wall when your Ex DIL sees the court order. Maybe NOW she'll understand her turn to make the rules is OVER. I know it's so hard on the grand daugher. This mother of her's needs to stop playing tug of war with you grand child. Surely she should know it's the little one she's hurting. BUT anyway, today will be a grand day to be with her and the family. I will be smiling today because I know how happy you will be.

    As you said it''s glourious out there today! Will be in the 70's with sunshine. Thank God it really is feeling like spring here. My cherry tree is just a wash with pink flowers ( I guess my covering it saved it. ) and it such a pretty sight to look out the TV room windows too. Happy, Happy. Now the next happy thing I will be looking for is the return of the hummingbirds to our back yard.

    I can't stay on here long, as I have to get ready to go out the door for a few things and then back here to get ready to go out to a dinner over @ the church. I wasn't expecting to help out with it, but my BBF, who's doing the dinner for the church, called and asked if I'd help set it up, serve it and then clean up, so off I go. Should be around a six hour affair so there by 4 back home by 10.

    Got the resultes of the ENT testing I did last week. My left ear, which has had the rare ear medical conditon since I was 16, is completely gone now and I have Arthritis in the jaw joint making the TMJ worse. Knew there was more more afoot then just so many ear infections this past winter. He said there is noting much more that can be done for me @ this point with it. My ENT Dr also called UCLA via Vanderbilt ( her sister University ) 1ST before calling me to see if there was anything that he could could script me for either the left or right ear, which has lost high pitched sounds now. They told him no not at this point.

    I must say I was sure way back in the 70's that UCLA would come up with some way to fix my ear problems. I held out hope they would their being a research/ teaching hospital that they'd be the ones to find a way to help stop this mecial conditon. They even said to me that over time they'd find something to hlep me. But I had to keep in mind how rare my ear conditons were. So all these years and so many new cures out there now I kept hoping my day,my cure would come and yet, none for me. I really must say I felt like crying when I hung up the phone. I was so disapointed. I had such a sense of hopelessness over the news. But when one has fibro they learn to ' bounce' back and move on. I have and on I go.

    Speaking of that let me close this here by wishing each of you a great day and one that has no fibro issues or pain connected to it.
    Gentle hugs, Linda R
    BetteK replied to rudyandirmouse's response:
    Oh, Linda,

    You, of all people cannot give up. MiMi give us our morning marching orders. You give us our daily hugs. We need both--in varying amounts--every day.

    The call to morning gets us going and reminds us that there is a world out there beyond our FM. Your post gives just enough love and sympathy to verify that yes, we are in pain, in constant fatigue, with many other symptoms that come from out of the blue (and hopefully go back there) over the years, but that we are still loved and valued.

    Your hearing is something you should never give up on. Hey, that sounds like something the stem cell researchers should be working on. Think how small the workings of the ear are and how huge a kidney or liver is to clone. Talk about a new area of research and of hope for you.

    In the meantime, as usual, you are ministering to others at church. See, your love is boundless--just like Christ's.

    That's why your gentle hugs are so wonderful.

    rudyandirmouse replied to BetteK's response:
    BetteK, I'm not giving up! Where on Earth did you get that idea? Surely not from my Saturday post. I said it plainly I got bad news, got sad, GOT OVER IT AND HAVE MOVED ON.

    And as for my hearing I said what it is and what it will never be again.. end of that.

    And thanks for giving me credit for the wonderful morning check ins but it's all MiMi and the other wonderful ladies here who check in and get out day going. This includes you too. As for me, I just check in.

    And I am not ministering at the church. I am there to help my BBF with her business.. and also chit chat with old friends. Nothing ministering about it. Not even boundless love, just me having some time out of the house.

    And everyone's gentle hugs here are so wonderful, mine are no different than yours, so you too have the gift of sending warm wishes and happiness for the day even better than I do.
    Linda R
    KMT333 replied to rudyandirmouse's response:
    Hi Linda,

    I don't know your hearing situation, so I don't know if this would be helpful or not... There's an implant called a Baja that my Dad has because he lost total hearing in one ear. Might be worth checking out. I think the company that owns the cochlear implant bought out the company making the Baja, so its name may have changed. Dad also said there's something new being designed that uses the teeth to pick up sound vibrations. But since I don't know your situation, I don't know if this is helpful.
    rudyandirmouse replied to KMT333's response:
    Hi KMT333.. thank you so much for your suggestion and it is a GOOD ONE.. but it won't work for me.

    What I've had going on in my ear is a rare disease, so rare in fact the medical community, so far, that they have no name for it yet because so few people are know to have it. And the reason for that is that this disease doese so much damage in so many areas of the ear, small bones in the ear and the nerves around it. So this disease has taken away the hearing by degrees.

    Many years ago I thought perhaps they'd find a way to help me. I mean I was being seen at UCLA in California after all. I had the head of the Head and Neck department as my doctor. No one else could be my doctor there, only him. I was sure a man with 2 medical PH.Ds would know how to help me. But being that the ear was breaking down in so many places, outer ear, inner ear and so on that there was, isn't now, a way to help.

    But you take your blessings when and where you get them..I have a tube in my ear to help it drain. I have scripts to help with the side effects of the diseasing. I still have my balance, poor as it may be some days. I still have hearing in the right ear. I don't feel the pain of the diseasing in the left, a blessing there and I only a few times a year when it all puts me down in bed.
    Again a blessing.

    And back in the day they said maybe to help save the little bit of hearing I had hearing I had in the left ear might be an implant of some kind but passed on it when the saw the Mastoid bone on the left side looked like a piece of Swiss Cheese.. so it came down to " No implant for you! "

    Yes I will admitt that I was so sad to learning the ear is getting worse. I was sadden to hear there is still no cure out there for me. But I looked on the bright side, there always is one, and I looked at what they have been able to do for me and it's been a lot. They've saved the hearing, so far, in the right ear with hearings aides every 3 years and you take God's blessings as you find them. I still have hearing.

    Thank you again for the suggestion..
    Gentle hugs, Linda R

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