;D
I'm posting this to give some hope to those like me who are new on the SS journey.
I'm coming up for three months on Plaquenil. No, I'm not cured, LOL. But ... I am having fewer really bad days, and on the weekend I had one and half days where I had close to normal energy, could walk almost normally, and much reduced joint pain. I was singing in the kitchen, and the DH came up to see what the problem was! Having had some time like that, I'm really hopeful there will be more days in the future.
I'm learning how to keep up with the dry mouth and eyes symptoms (largely because of advice from this board), and am on average more comfortable.
Thanks for posting Thea. Good news is always the best to hear! Bless your heart! Sing away girlfriend! =)
Peace and blessings to you!
~Andrea
That is such great news!
Wonderful news! I needed to read that. Hope is in the air!
Hooray and congratulations! Yes it can get better. Things come and go but it's good to be able to embrace life when things are going well.
Yes, it is amazing how just a little break from the nonsense makes the nonsense easier to handle. And I'm so glad to have a place where I can share how much it meant to me, with folks who understand. ;D
That is wonderful news you have shared with us. I am so happy for you.
susan
Thanks for sharing! It's easy to forget sometimes that we have good days too!
So excited to read your awesome news! I'm on Plaquenil for 7 1/2 weeks now and am starting to get some relief as well. Maybe, we could sing a duet. ;D
Hugs,
Maria
Thats awesome..its true for the most part things can come and go. We dont see that when its bad, but I always go to sleep saying maybe it will be better tomorrow. And many times it is, like today. Yesterday I thought I was gonna die, today I got up early and started mowing the lawn at 8am, then did my grocery shopping..and now im pooped :D But its a good kind of pooped the kind that says your body has had a decent amount of exertion and you feel good but tired from it. Take it day by day, sometimes hour by hour but its how I live my life now. I dont overplan things I do what I can when I feel I can.
Thanks for posting this Thea! Last week was HECK for me and I thought "This is it, I'm not going to get better."- then, yesterday and today Are better. I have been on plaquenil over 2 years; I know I need to stay on it. Part of the reason for the HECK week
was being on the road from one end of the state to the other (doctor and family visits). I am still in the learning process to
pace myself and try to live mindfully.
It is so true about how this disease waxes and wanes - and at different levels for different people - just need to remember
the 'waning' times.
Part of the problem of the 'bad times' which for me in FLARES is that there is clear and definite DEPRESSION that comes with a FLARE.
Not just me feeling bad about feeling bad, but DEPRESSION, true Depression. Depression is a horror show that lies to you about reality.
Yes, you DO feel bad, yes you DO hurt, NO you can't do what you did yesterday, NO you probably can't even get out of bed, but DEPRESSION says this is it, this is how it's going to be and you might as well just give up now.
I saw how depression is an actual symptom of my flares. Separate from how I usually feel.
I'm always so glad to feel better, and try to remember when I don't that it will pass. But it's hard.
Hugs, Elaine
If I'm singing in the kitchen, my husband puts in ear plugs and leaves the house! ;)
That is great news! I'm so glad to hear it.
Sharon
Quote from: Carolina on May 12, 2014, 03:28:08 PM
Part of the problem of the 'bad times' which for me in FLARES is that there is clear and definite DEPRESSION that comes with a FLARE.
Yes, you are right. I really don't want to live when it's bad. I wrote my obituary last week, thinking/hoping it might be needed soon! LOL And that's not like me--I'm a very optimistic person in general. It must be some sort of chemical thing in the body--it is so heavy. I try to do the distancing thing: "oh, look, that woman is sure feeling down."
(slccom-- I can't carry a tune in a basket, which is possibly why my DH mistook my happiness for intense discomfort!)
Quote from: Thea on May 12, 2014, 08:33:37 PM
Quote from: Carolina on May 12, 2014, 03:28:08 PM
Part of the problem of the 'bad times' which for me in FLARES is that there is clear and definite DEPRESSION that comes with a FLARE.
Yes, you are right. I really don't want to live when it's bad. I wrote my obituary last week, thinking/hoping it might be needed soon! LOL And that's not like me--I'm a very optimistic person in general. It must be some sort of chemical thing in the body--it is so heavy. I try to do the distancing thing: "oh, look, that woman is sure feeling down."
I'm at that point now. I've been very fortunate that I had almost 4 years after my last back surgery (they added another level to my fusion so I'm fused from my waist to my pelvis) where my Sjogren's was pretty quiet. I had a few flares, but nothing too unbearable. That came to an end last year and life has become very hard to deal with. I've told my husband that, if I weren't so afraid that I'd make things worse, I would probably check out now.
I just deleted several additional paragraphs and will move them to another topic. I don't want to rain on Thea's fantastic weekend. I'm so glad you had that time and hope you have many, many more. I've been diagnosed since 2001, and it definitely hasn't been all bad days. I need to learn to focus on the good again, and not focus on the bad.
I hope everyone has at least one good day this weekend,
Tracy
Good news is always welcome here! I am so glad you are feeling relief. And hope things continue to improve.
YAY. :)
Yay! Glad to hear things feel better.
My version of problems with singing - I was once whistling, and a total stranger turned to me, and in a rather snotty tone said "Who ever gave you whistling lessons should give you a refund"! Yikes! Not untrue mind you. The thought of that still makes me laugh.
Thea, so happy to hear that you are starting to feel some relief from the meds. That's wonderful.
Carolina- your take on depression is interesting- it is definitely its own symptom, as is anxiety. My mother is so anxious and depressed, but I'm not quite sure how much of it is directly part of the Sjogren's (fatigue, pain, irritability) and how much is what has developed as a result of the Sjogren's. Do you find that when a flare ends, your depression lifts as well? My mother was switched from Prozac to Zoloft, but neither has helped very much yet. Unfortunately, only Ativan alleviates her anxiety and of course we hope she won't have to keep using it daily as it actually increases the depression.
Wishing better days for everyone.
Quote from: warmwaters on May 13, 2014, 02:53:21 PM
My version of problems with singing - I was once whistling, and a total stranger turned to me, and in a rather snotty tone said "Who ever gave you whistling lessons should give you a refund"! Yikes! Not untrue mind you. The thought of that still makes me laugh.
Hey, maybe that was my dad! I came from a very musical family. At an early age, my dad made it pretty clear that I should learn to play an instrument because I sure as heck couldn't sing!