Bad day/good day

[Cindy]

I have an appointment with a new rheumy this coming Monday. I don't  think my sjogrens is bad at this moment who knows tomorrow how it will be. I do have severe dry eyes but they are not causing a lot of pain yet. I had a flare almost 2 months ago with severe joint pain and burning sensation in arms and hands. From the pain Im better. I was taking mobic which I stopped because it was causing more dryness in mouth. I was just wondering how is a bad day/good day for you. I know we all different but I was just wondering. My biggest fear is not be able to work Im 28 years old and Im the insurance holder in my family. My husband is self employed and of course insurance is not an option. Not working means=no insurance. That is my biggest fear.

[Persephone]

I may be new to Sjogren's and this website, but one thing I know for sure is that this is such a varied disease.  I'm astounded by how differently it affects each person.  For me, I was diagnosed November 2011, so I am a newbie.  I also seem to have a more fast progressing kind than most.  I didn't go to my doctor complaining of dry eyes.  At times, my eyes feel sticky but other than that, I don't notice much with my eyes.  I also didn't complain of a dry mouth because I have had a type of GERD called LPR for several years now.  It affects the larynx and pharynx.  To deal with it, I have ice water constantly, even in the middle of the night, so I wouldn't know if I was 'dry'.  A bad day can be an overwhelming fatigue, one that I can stare at the tv and not have the energy to turn it to a different channel or even turn it on.  I also have bad joint days in particular my feet and my hands, which makes it difficult to walk or cook or clean.  I can have a day where my breathing and my heartrate are so messed up that walking to the bathroom is exhausting.  It is also responsible for my liver issues so at times, I will be swollen under my right ribs and be slightly orange there too.  It will cause pain similar to a gallbladder issue, even though I don't have mine.  Right now, I am having a bad face day...ie, saliva glands and lymph node swelling so bad that it is difficult to talk, chew and move my mouth.  I can relate to your fear of how it is going to affect your life, primarily your ability to work.  I worry about that too, but I work at home.  While I don't earn a paycheck, due to my husband's commute, I am the only person for my girls...school, doctors, activities, dinner, etc.  I also have elderly parents who need help and they live in the building across from me.   I can understand the pressure of knowing there is a lot riding on your ability to do day to day work.  While we all may not have symptoms that are exactly the same, we share a basic fear....What will this crappy disease take from me now?  I'm sorry that you are left pondering unknowns and the stress that Sjogren's causes you.  At least we have a place to come to that you can lay down your problems and won't be judged or considered a whiner.  I hope things go better for you. 

Persephone

[Crymeariver]

We are self employed to and scraping together the insurance premium is getting impossible.  Oh yeah, the economy is improving.  Riiiight.  I live in absolute fear since being diagnosed with lymphoma.

I'm am trying to support my husband and keep up my end of the business but if it isn't bringing in enough to provide insurance than the business isn't bringing in enough in my mind.  I think he needs to brush up on his previous work skills or train in a new field.  I hate to crush his dreams but it's time to be practical and think ahead and prepare for the worst. 

There is a lot I know I can do even if I have to zoom in the computer 7 times or other adaptations.  I'm just not sure i can make it through an entire interview without using eye drops or a quick spritz of mouth spray. 

I think most of us are able and do continue to work through the flairs and low periods but it all depends on an individual's disease progression.
It is important for you and your husband to have a backup plan.  Make sure he understands your fears and concerns and the potential severity of Sjs. 

Good luck at the rheumy appt.  Hopefully they'll find a new med for you.

[A66eyroad]

A good day is when I can do almost everything I want to do.

A bad day is when the nausea and headaches are so bad that all I can do is put the blankets over my head and stay there.

Most days are somewhere in the middle.

[topping21]

I am in the middle of the pack!   I have some good days, Okay Days and Blah Days and then I have my flare ups that can last a  few hours to a few days.  I have learned from alot of great folks on this site to take this thing day by day and if worse comes to worse hour by hour,

[eye2dry]

hello.

I can pretty much do what I want..but maybe not do it as long or as often...as in gardening, all day trips with the grandkids to the zoo,etc...

Once I got my eyes under control (which was hard), my foot pain addressed and fatigue resolved with my meds....things started to get better.

I seem to worry less about "down the road" things. I still work but it is part-time.

Occasional health problems arise (like my UTI right now)or  an ache here and there, but for the most part...I am getting to a place of peace with life.

I know I could be "the one" to have all the systemic complications and go down hill, have to quit work but FOR TODAY I am ok.

Good luck with your new rheumy, I hope you like him/her and you both can work out a plan you like and that works for your sjogrens.

eye2dry

[mshistory]

A good day - not too much pain in my muscles or joints and my fatigue isn't overwhelming to the point that I HAVE to sleep or will be unable to function.

A bad day - horrible joint/muscle pain, swelling, overwhelming fatigue, asthma acting up, and sometimes just for fun - sudden vertigo thrown in. I've been in a pretty bad flare for almost three weeks now, although my rheumatologist said the swelling in my joints has gone down... the pain hasn't though, so it may be fibro pain or neuropathy or who knows...

Most days it's just really bad fatigue and mild pain (and that darned asthma).