Update 2.08.13

Physically I'm feeling much better. I can breath and I'm not feeling nearly as miserable I was months ago. It's still a lot of adjusting however. My sleeping schedule usually has me in bed my 9pm and up at 5am. My only other complaint would be tightness in my chest and ribs which I read is a side effect of Imuran.

I have also found the effects of Prednisone very difficult at times. I can honestly say the medicines do have a very profound effect on the mental state. I have felt so on edge, snapping at people for the slightest things. I try to control it or realize how ridiculous I am being.I also developed the characteristic Moon Face! Oh well it's not forever but the soon I can taper off the better.

I think the worst is the lows. A couple of times I just find myself crying, feeling like a burden. It can be so easy to fall into a funk of what I’m missing, who I’m missing and feeling like a burden to my family.

I love music and there have been two songs that have helped me keep my experiences in perspective. Skyscraper by Demi Lovato and Just For Now by Imogen Heap.

Skyscraper captures just how I feel. While I may feel broken down at times I’m on the way to being my best me. I am not a victim and each day I’m given the chance to be so much better than the day before.

Just For Now while the lyrics aren’t applicable so much, the title has become my mantra. All of the uncertainty and this situation is “just for now.”

I intend to use this time for the best. I can spend time reading and researching. I can play music and write an pick up new hobbies. Most of all I still have goals I want to complete.

I want an apartment, a full time job, to run a 5k, get a puppy and graduate college. If I can complete these my September I’ll be thrilled. And it will be so awesome to look back to right now when all of it seemed so hard to obtain.

I love reading about other people’s experiences. They really have given me so much insight. One of the most invigorating part of my experience thus far is the compassion and goodness of people.I have been shown so much love and support from family, friends, and strangers. I definitely know that one of my duties is to spread that same support to others!

Thanks for reading and I look forward to speaking/reading more with many of you!

I am so touched by your story because it sounds exactly what I am going through with the shogrens. Today I am off the predisone and I am afraid I will relapse like all the other times. Last year I was on prednisone so much I could. Pull a hand full of hair out at one time. Right now I am irritable and nervous coming off it. I just want to breathe enough to be able to walk around the mall or even the grocery store without bringing 3 bottles of water with me and making two bathroom trips before coming home.So before I think about doing any thing I just say to myself it’s easier to stay at home.I am going to ask my doctor if a low dose predisone treatment would be healthier than sitting gaining weight because I just cough to struggle to breathe. I am so happy I am finding friends to share.I am praying for each and everone of you! I know I can stay positive with friends like you!

great post

Yes, Thank you for sharing your experience. Sjogren's Sydrome like many of the auto-immune disease sure does pick and choose the way it wants to present it's self that is for sure. It sure is nice to be on this web site and able to share with people that understands Sjogren's Sydrome from an personal experience with it. :-)