Tag Archives: Sjögren’s Syndrome

EBMD One of RA’s extra special gifts

SO…. I’ve got RA and Sjogrens and Raynauds.  They kind of all play off on each other.  RA is primary, the other two kind of are just co-existing conditions.  These kind of affect me to one degree or another pretty much every day.

My RA is pretty much currently controlled.  Yeah,I’m on an obscenely expensive cocktail of meds, and I get tummy shots every week but it is a pretty decent trade off at the moment.  It means I’m in reasonably good shape for the most part and I can hide my rather thin hair with my rockin cool Buffs.  Can’t hide the chemo brain so much, but I’m trying to determine the best way to get around that.

OH… and something weirdly new… since my hysterectomy… I’m having hot flashes… which is wicked cool because my feet are freezing (Raynaud’s) and I’m trying to figure out to keep my tootsies warm while mitigating the hot flashes.  In the next couple months that should start to take care of itself.  I’m not supposed to take hormone replacement because it can lead to an increased chance of cancer in a body that is already having an increased chance of cancer (thank you RA) so I think I will keep on taking methotrexate to keep that at bay too… I look like a real goofball walking around in shorts and a tank top and fuzzy warm socks.  I’m SO glad I’ve never cared a whole lot about fashion… I’m a honey badger!

This week I had my annual eye exam with my Ophthalmologist.  I always kind of view this with mixed feelings.  He’s… eccentric.  It’s late summer and he always whistles Christmas songs.  He has an incredibly interesting sense of humor.  He also tells me the ongoing saga of my EBMD.  Epithelial basement membrane dystrophy (EBMD) is this weird ass condition where the cells of your eye get all loose and weird and can stick to your eyelids in the morning when you wake up, your eyes can hurt a lot, you can get way blurry vision…. blah blah blah.

This medical explanation is pretty good if a little… medical…

The corneal epithelium produces and adheres to its underlying basement membrane. Corneal abnormalities associated with map-dot-fingerprint dystrophy are the result of a faulty basement membrane, which is thickened, multilaminar, and misdirected into the epithelium. Deeper epithelial cells that normally migrate to the surface can become trapped. Epithelial cells anterior to aberrant basement membrane may have difficulty forming viable hemidesmosomes and basement membrane complexes, which attach to the underlying stroma, resulting in recurrent erosions. Irregular epithelium centrally can cause decreased vision.

It is exacerbated by dry eyes… so, while it may have existed independent of my RA… it never showed up until… oh… about 3 months before my advanced case of RA was diagnosed.  Coincidence?  Yeah, probably not.

I’ve been kind of trying to dig, but I can’t seem to find anywhere that links or discounts the link between the two even as kind of… well maybe that would make it worse… kind of thing.  One website shows that EBMD might help to diagnose Sjogren’s … so maybe…

So… I’ve been on Restasis for a couple years.  Apparently it isn’t helping a whole lot.  I’m not getting another prescription for that… now… it is a matter of just keeping my eyes as wet as I can.  Tear replacement drops (over the counter) and something that isn’t quite over the counter but what they are telling me is BEHIND the counter (kind of like cold medicine and cigarettes… hmmm) called FreshKote… Three times a day to try to rebuild my tears.  They kind of burn a little, I hope that means they are working… I’m glad that the pharmacy put the prescription through as a real prescription, because it looks like my insurance is going to cover it… which is good because $40 a pop for eye drops makes my brain hurt… but… whatever it takes to keep on keeping on, I guess.

Oh… and in about 2 weeks, I can pick up my shiny new glasses… Squirrel Girl has given them her stamp of approval… so… 😉 maybe they will be an improvement.


30 Things About My Invisible Illness You May Not Know

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

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….


My RA Story…

I was talking to my mom this week and she asked me how it started.  I realized that I probably haven’t ever really written down my story… so (as I sit here with the rain tapping on my window and … Continue reading