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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
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 
![[Linked Image]](https://www.kickas.org/images/flowers/Smilingsun.gif) Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Jan 2010
Posts: 2,105
Major_AS_Kicker
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Major_AS_Kicker
Joined: Jan 2010
Posts: 2,105 |
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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Joined: Dec 2010
Posts: 456
Warrior_AS_Kicker
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Warrior_AS_Kicker
Joined: Dec 2010
Posts: 456 |
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 -Hizentra, leflunomide, Prednisone
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Joined: Jan 2009
Posts: 4,501 Likes: 1
Supreme_AS_Kicker
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Supreme_AS_Kicker
Joined: Jan 2009
Posts: 4,501 Likes: 1 |
Nice to see smilies coming from you. Sorry you need the steroids but glad that you are feeling better. Enjoy the steroids for now. Keep the snacks locked up (if you get the munchies), but not the chocolate. 
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away.
Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
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
A life lived in fear is a life half lived.
"Strictly Ballroom"
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
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
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
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
A life lived in fear is a life half lived.
"Strictly Ballroom"
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Joined: Feb 2011
Posts: 1,968
Captain_AS_Kicker
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Captain_AS_Kicker
Joined: Feb 2011
Posts: 1,968 |
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. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
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Joined: Feb 2010
Posts: 2,190
Major_AS_Kicker
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Major_AS_Kicker
Joined: Feb 2010
Posts: 2,190 |
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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Joined: Dec 2010
Posts: 456
Warrior_AS_Kicker
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Warrior_AS_Kicker
Joined: Dec 2010
Posts: 456 |
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 jalapeños does not sound like fun. Your daughter sounds like an angel, just like you Joyce . Hope you are better today. Shari
Meds -Hizentra, leflunomide, Prednisone
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