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#473232 - 07/13/12 04:02 PM
Hello, Hello, Hello
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Addicted_to_AS_Kickin
Registered: 11/13/02
Posts: 5895
Loc: USA
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Just wanted to say hi and that I am thinking of you all and am praying for all of you. I may be a tad better today but my eyes are still bothering me A LOT. Don't like this Lupus stuff; especially when it starts bothering my Central Nervous System. Still, I did my "happy dance"  this a.m. just because I woke up and I am here for another day in this beautiful world. The steroids for my Lupus have helped my pain and that helped me with the "happy dance". I am thankful for some pain relief even though I know what they are doing to my body. As my dr. said, "We can't live in the future. We decided a year or so ago to go for quality of life and at the moment, the steroids are really adding to my quality of life."  Hope you all have a wonderful weekend. I can't be on here long enough to read and answer posts but know I am thinking of you all. Michelle, praying constantly for you. Hugs and Blessings. Possi 
_________________________
 "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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#473233 - 07/13/12 05:34 PM
Re: Hello, Hello, Hello
[Re: Possi]
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Platinum_AS_Kicker
Registered: 01/25/10
Posts: 1646
Loc: UK
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steroids might be horrible things, but I suspect for cns lupus they are just what you need, and will do far more good than harm. Hope things start coming right for you quickly so you can do that happy dance more often!
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#473235 - 07/13/12 09:20 PM
Re: Hello, Hello, Hello
[Re: Possi]
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Third_Degree_AS_Kicker
Registered: 12/01/10
Posts: 262
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Possi: I have been thinking about you. I'm in the steroid boat with you too right now. You are not alone. Glad to hear you are getting pain relief.
I am enjoying better sitting and standing tolerance to play with my little one and sleeping well. Although not pain free, this is much better quality of life. Let's live this up while we can!
Shari
_________________________
Meds: injectable MTX, Simponi, daily hydrocortisone, pain meds, NSAIDs, Methylprednisone for flare ups, Armour thyroid
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#473252 - 07/14/12 02:23 AM
Re: Hello, Hello, Hello
[Re: Possi]
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Very_Addicted_to_AS_Kickin
Registered: 11/15/01
Posts: 17528
Loc: Toronto, Ontario
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Joyce, You are always in my thoughts and heart. I hope your eyes clear up soon. I hope you always carry this joy in your heart. I hope your beautiful smile is around for a very long time. Do what you have to in order to feel better, OK?
Love and hugs,
_________________________
Kat "Spring Goddess" by CJ Shelton Never let the future disturb you. You will meet it, if you have to, with the same weapons of reason which today arm you against the present. - Marcus Aurelius Antoninus, Meditations, 200 A.D.
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#473262 - 07/14/12 10:51 AM
Re: Hello, Hello, Hello
[Re: Inanna]
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Addicted_to_AS_Kickin
Registered: 11/13/02
Posts: 5895
Loc: USA
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Thank you all. I really thought I was making progress. Yesterday was a fairly good day. I walked out on the patio this a.m. and as soon as I walked out where the sun was bright (patio is covered), my eyes quickly spasmed shut and my face went in to a terrible distortion. I was not a happy camper. Then I thought that there is some good in every thing. What is good is that this gets me out of helping my daughter can jalapeno peppers.  I would never do that except she wanted to try what her paternal grandmother did. Her dad was going to help her but it quickly got to his COPD so she is sitting at the bar in the kitchen by herself deseeding and deveining jalapenos. I told her you can get a jar for not much more than $1.00 but she wants to try it. We are blessed. Enjoy the weekend. Possi
_________________________
 "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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#473267 - 07/14/12 01:18 PM
Re: Hello, Hello, Hello
[Re: Possi]
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Very_Addicted_to_AS_Kickin
Registered: 11/15/01
Posts: 17528
Loc: Toronto, Ontario
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Oh, Joyce, you do inspire me. I laughed out loud when I read your 'good' thing. I completely get it! It's also very cool that she want to do this.
I love your take on this and so wish it weren't necessary for you to have to put up with it. I look forward to the day when I can get to OK and we can take a walk together.
Love and hugs,
_________________________
Kat "Spring Goddess" by CJ Shelton Never let the future disturb you. You will meet it, if you have to, with the same weapons of reason which today arm you against the present. - Marcus Aurelius Antoninus, Meditations, 200 A.D.
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#473289 - 07/14/12 04:39 PM
Re: Hello, Hello, Hello
[Re: Possi]
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Gold_AS_Kicker
Registered: 02/24/11
Posts: 1542
Loc: Pacific Northwest
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Joyce, you are so positive that it gives us insight on how to cope. Hope this is all behind you soon.
_________________________
Pea Diagnosed with A.S. 26 year's ago. Diagnosed with Fibro 9 year's ago. Sulphasalazine, Folic Acid, Remicade
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#473330 - 07/15/12 12:43 AM
Re: Hello, Hello, Hello
[Re: Possi]
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Major_AS_Kicker
Registered: 02/26/10
Posts: 2135
Loc: N. Sacramento Valley
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Ah, steroids, the drug we love to hate. Or is it we hate to love? I keep saying it comes from the devil. It does help with the pain. It's just so hard to get off of.
I love your attitude. I need to be more optimistic. Thanks for lifting me up
_________________________
Donna Cherish your yesterdays, Dream your tomorrows, But live your todays. Do the very best you can leave the rest to God. God Bless,
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#473346 - 07/15/12 06:55 AM
Re: Hello, Hello, Hello
[Re: Possi]
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Third_Degree_AS_Kicker
Registered: 12/01/10
Posts: 262
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Joyce: Thinking of you tonight and was hoping the steroids were still doing their miracle for you. I'm sorry your eyes are spasming. Did you call the doc? You are in a tough spot not being able to take a lot of meds to control the inflammation. I would stay away from anything that triggers inflammation - heat, sun, certain foods,etc... My steroids are wearing off too from having to decrease the dose now by 10 mg each day and I can feel the AS pains once again. On a positive, I am less moody and I think I am at the end of the serum sickness. My doc tells me I can try Remicade again or try Simponi. I guess Simponi has less risk of allergic reaction. I don't know what to do at this point. Any advice Joyce? I know you have been there, done that. I love how you look at the brighter side of things. I couldn't agree more, deseeding and devining jalapeņos does not sound like fun. Your daughter sounds like an angel, just like you Joyce  . Hope you are better today. Shari
_________________________
Meds: injectable MTX, Simponi, daily hydrocortisone, pain meds, NSAIDs, Methylprednisone for flare ups, Armour thyroid
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