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Thread: onatreetop update

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    Default onatreetop update

    Hello all. Been a long time again I know. Have had lots of adventures in the way of the weggie. Kidney issues Stones, got me a weeks vacation in August. Was on a mophine cruise for a week and 3 surgeries later kidney was saved thank you greater power. Stones blocked it but got it in time before it blew. So I still have my orginal parts so far.
    Now I have been off the remicade for 3 monthes and started retuxin 8 weeks ago. Its been interesting I guess. It has come with antibiotic and 125mg steriod bags also. so it was 4 bags this infusion which is number 2 of the treatment. with the weather changing it hard to tell if the aching is from the wg or not.

    I also found out left hip is broken but funtioning some how. Will need to replace it aventually along with all the others at this point. The steriods are sitting at 16mgs of medrol. Tried to tapper but only got to 12mgs and could not function. so went back to 16mgs. The problem is it is eating away at all my joints. I asked the rhumy if i will be the bionic woman in ten years. She said lets hope not.

    Hand surgery is planned for the 22nd of dec. left hand this time. the joints are swollen enought that they dont work well and are in pain most of the time. hav e the drops worse.

    Having the throat dialated again tuesday. If it doesnt last longer this time I have 2 go 2 penn univ. and find a GI there.

    Started lube shots for the knees also. only on the second round of shots but havent noticed an amazing change yet. right knee is bone on bone and is very loud going up the stairs so that will be another replacement in the future also. Every doc wants to wait as long as possible i am turning 44 this month. They don t want to do any of that this early. me neither.

    so thats a brief summery of the last three monthes.
    Last edited by onatreetop; 12-05-2011 at 04:34 AM.

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    This last summer has not been good for me either...you're a battler ona, keep it up, a good inspiration for those of us who need it! Thank you for the update!

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    I decided that it is better to feel alive than waiting for the next bad news. With 4 kids I dont take time to feel sorry for myself much. I just get upset. and that doesnt help anyone around me so I try to laugh instead. Yes the pain is there and am scared but take it a day at a time and just keep going. its better for the family and I that way. when I tell them I need help or rest they are finally getting it. Also it is better laughing at everything even if its sarcastic.
    And of coarse the good old move it or lose it is so true. I have proven that one to myself.

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    Oh my, it seems there aren't many parts of you that weg hasn't affected! I hope things are turning around for you. Four kids! My two boys keep my hopping! I don't know how I'd do it with 2 more. Kudos to you for sure!
    ~ Chris ~
    (Female )

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    Thank you. They do keep me moving. 3 teens and one 8 almost 9 year old. They are all effected by the WG.More so than my husband. The youngest is having a hard time being away from me. He's afraid I might not come home or end up in the hospital again. He and another were with me when I went into the er last time and then they kept me for a week. So I have made the extra effort to do things with him. We take art lessons together and he joined cub scouts. I have a boy scout working to Eagle in the future also. We were all in the town pararde yesturday on floats. It was good for them hard on me because of the infusion was the morning before but it was another memory we have togeteher. Making memories is my goal besides keeping some of my own parts.

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    Quote Originally Posted by onatreetop View Post
    Thank you. They do keep me moving. 3 teens and one 8 almost 9 year old. They are all effected by the WG.More so than my husband. The youngest is having a hard time being away from me. He's afraid I might not come home or end up in the hospital again. He and another were with me when I went into the er last time and then they kept me for a week. So I have made the extra effort to do things with him. We take art lessons together and he joined cub scouts. I have a boy scout working to Eagle in the future also. We were all in the town pararde yesturday on floats. It was good for them hard on me because of the infusion was the morning before but it was another memory we have togeteher. Making memories is my goal besides keeping some of my own parts.
    I don't know how you find the energy for all of that! Fatigue seems to be my most lingering symptom lately. Good for you!!!
    ~ Chris ~
    (Female )

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    b complex vitamins. somedays are easiers than others for sure. thank you b vitamins!

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    Quote Originally Posted by onatreetop View Post
    b complex vitamins. somedays are easiers than others for sure. thank you b vitamins!
    Ah, we do find ways to cope. You've been through the wringer for sure. Keep hanging in, and taking those B vitamins!

    Al

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    oh yeah! tried caffine first but it wasnt working well then i tried the vitamin b and that did the trick. I am a very determined to find a way if it is at all possible. Some meds have the backwords effect on me also. but the vitamin works for me.

    one other thing did that the docs directed me otherwise is was to take the water pill in the night before bed instead of the morning. now when i wake up i am not as swollen and stiff. might wake up once a night to use the restroom but very rarely. Again works for me. not for everyone i know.

    Almost forgot that i have to fast later tonight for the stretching in the morning.cant wait to eat and drink without gaging again.

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    It is good to hear from you ONATREETOP, I undertand how busy you are. Hope you start to have less pain.

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