I have Sjogren’s Syndrome too, and lupus, and lots of other stuff....
I got into trouble last year when my blood platelets (that keep you from bleeding) dropped.
The protocol to fix it was high dose prednisone, 90mg.
You are right high dose is absolutely no kind of fun.
Alone with the weight gain, my hair began to come out in hands-ful, I could not stop peeing so I became serverly dehydrated and then it affected me though processes so I could barely make a sentence some days.
The regimedidn’t even work after all that so I ended up on chemo too. Go figure!😕
Did you know most of the weight is fluid? That helped my bruised ego some.
But I still have three sizes of clothes in my very full closet.
Less of size 16, more of size 14, and some of size 10-12.
I guess it took from November last year to when the high dose pred ended, to about March to go from my size 16’s to my 14’s. It happened without me doing anything at all.
I have always been a responsible eater though, as I know my body struggles enough already without
turning it into a garbage can for junk food.
So I am at 14 now, and not thrilled about it but guess what the ITP (low blood platelets) is fixed!🙂
If I want to get back to my size 10 I am going to have to work at it.
The suggestion above are good ones.
I will add again, to move, keep moving, as best you can.
An exercise bike is good, not too hard on the body for cold days, but walking is good too, even laps at the Shopping Mall.
It is understandable at your age why you would be so distraught, no young woman want to carry 60 pounds.
I get it totally. But you need to know your body is trying g so hard for you, treat it with the compassion it deserves. Like a child only a Mother could love. Your body deserves a medal from your soul.
I am 56 and I was once where you are.seemed like minutes after I married the love of my life, we were honeymooners, we did everything together. Travel, hiking, camping, very outdoors, and like staying in and watching old movies. Then it all fell apart. Like you I could not move, just wanted to sleep all the time.
Then my diagnosis. And here I am approaching 30years later.
When I think of all the things I have done, people I have met, and how much I appreciate my determination and the unending appreciation I have for my little body.....I am so darn proud of that.....and you know when I remember all that great stuff what size I was doesn’t even come into my mind.
You are new to this, and I am so sorry dear, truly I am, if not for your size, for the struggles you have endured. But also so proud of you for your strength and courage. Determination will come with time.
I have turned it into a game almost. Kind of “Oh Yea Lupus, you think so?”..... and then the determination kicks in and I begin using the tools I have gathered in my personal Luous tool box and work with my doctors to kick ass!
The other thing I can say that will help is to not be ashamed, share your story with people, you will find the ones who really like you and love you will learn great lessons from you. And they will know when things are not so good, and be able to support you better. It builds character when you are there for someone who needs a little support. By now you know that feeling and how good it makes you feel to be there for someone. Have you shared your feelings and hurt about your new, temporary size with anyone but this forum?
Being sick can bring plenty of gifts that a healthy person would not get a chance to learn.
Like, not to sweat the small stuff, that everyday you wake up is a gift, the realization of how difficult being sick can be but that there is always someone who is much worse off than you. Understanding and Compassion...all that good stuff. Strength, Courage, Pride, Determination, Reward.
This in turn gives you the knowledge of just how important a little support can be. Even if it’s a visit for tea, or a phone call. When a person is really sick, YOU KNOW now how stuck they feel and cut off from the world. I tell you it builds character and love. Humanity.
Love yourself dear, this is all new and very difficult for a young person like yourself I know.
But life is wonderful and precious and so much more than skin deep.
Do something special for yourself today, celebrate you, be so proud of you, you have to because unfortunately it’s not going away. So very sorry about that.