Category Archives: Sjögren’s Syndrome

Another year, Another chance to take stock and think about my Invisible Illness…

1. The illness I live with is: Rheumatoid Arthritis, Raynaud’s Syndrome, Sjögren’s Syndrome
2. I was diagnosed with it in the year: 2009
3. But I had symptoms since: 2007
4. The biggest adjustment I’ve had to make is:  remembering that a compromised immune system means I have to think about everything I do, ABSOLUTELY everything… I can’t buy a glass of lemonade from the kid down the street without thinking about what germies might be flying around the drink, the cups, the hands of the little one.  What can I catch from the can of pop I would love to drink?  What can I catch from riding the elevator?  Hand Sanitize is my best friend.  It isn’t fair.
5. Most people assume:  I’m fine, I’m imagining things, their condition is way worse than what I may have, that if I take an advil I will be okay.
6. The hardest part about mornings are: having to take stock of how I’m feeling and determine what outfit will hurt the least putting it on
7. My favorite medical TV show is: anything on discovery fit and health
8. A gadget I couldn’t live without is: my iPad
9. The hardest part about nights are: finding a position that will let me sleep
10. Each day I take __ pills & vitamins. (No comments, please) 12 (plus two shots a week in the stomach)
11. Regarding alternative treatments I: have tried many, and I know many don’t work
12. If I had to choose between an invisible illness or visible I would choose: invisible, sometimes anonymity has its advantages…
13. Regarding working and career: some days are awful, some days not so bad.  Sometimes standing up after sitting for a few hours makes the pain an 11…
14. People would be surprised to know: that even though I’m pretty much controlled, it will hurt for the rest of my life to some degree
15. The hardest thing to accept about my new reality has been: accepting that I have limitations.
16. Something I never thought I could do with my illness that I did was: walk a half marathon very fast
17. The commercials about my illness: PISS me off.  I don’t mind being reminded of it, but don’t make it sound like either I can’t do anything or that if I just take your drug I will be able to spend 50 hours a week on the stair-master with a perky little smile.
18. Something I really miss doing since I was diagnosed is: Not having to think about what I could catch from whatever it is I’m doing.
19. It was really hard to have to give up: the concept that I’m okay and I will be okay
20. A new hobby I have taken up since my diagnosis is: Telling people about the fact that it totally sometimes sucks to have RA, but life is livable and you CAN do something, even the small things, to make yourself smile.
21. If I could have one day of feeling normal again I would: go to Disney, carry everything I want to carry, and walk all day long without thinking about how bad my feet and hips and ankles are hurting
22. My illness has taught me: that I have limitations
23. Want to know a secret? One thing people say that gets under my skin is: Oh yeah, my grandma has Arthritis too.  Have you tried Advil/tylenol/excedrin/aleve?  NO… you know what, I never ever THOUGHT to try pain meds to try to push the pain and lumps and bumps back into the background.  THANK you for enlightening me…
24. But I love it when people: ask, talk, smile, and even gentle hugs
25. My favorite motto, scripture, quote that gets me through tough times is:
It isn’t good, it isn’t bad, it is just different
and…

Be The Best of Whatever You Are
Poet: Douglas Malloch

If you can’t be a pine on the top of the hill,
Be a scrub in the valley-but be

The best little scrub by the side of the rill;
Be a bush if you can’t be a tree.

If you can’t be a bush be a bit of the grass,
And some highway happier make;

If you can’t be a muskie then just be a bass-
But the liveliest bass in the lake!

We can’t all be captains, we’ve got to be crew,
There’s something for all of us here,

There’s big work to do, and there’s lesser to do,
And the task you must do is the near.

If you can’t be a highway then just be a trail,
If you can’t be the sun be a star;

It isn’t by size that you win or you fail-
Be the best of whatever you are!

26. When someone is diagnosed I’d like to tell them: your life isn’t over… some days suck, some days are beautiful.  Live in the beautiful and carry those days into the days that suck.
27. Something that has surprised me about living with an illness is: I can do it…
28. The nicest thing someone did for me when I wasn’t feeling well was: a hug and a cup of tea
29. I’m involved with Invisible Illness Week because: I have one, I life one, WAY more people live with it than anyone realizes… and it matters
30. The fact that you read this list makes me feel: grateful, hopeful, like I may have accomplished something….