my first trip to the opthamologist

[karleesgranny]

well the trip pretty much upheld the dx of sjogrens.... my doc said that the rate it took for my tears to evaporate from my eyes after blinking was like 2 seconds.... she said that is very dry.... she said my eyes looked like golf balls instead of smooth surfaces which she says is what happens to your eyes after so much dryness and all...... she said i have ocular surface disease which just means dry eye syndrome from the sjogrens... it is nice to have more test back the dx of sjogrens not that i want it but at least it wont be like when this all started where i was told i had ra and then 3 years later i was told i didnt..... my rheumy says i probably had sjogrens then (10 years ago) but then my rf was positive and my other rheumy just assumed it was ra since i had the joint pain with the positive rf and it was asymetrical.  Anyway other than the whole dry eye thing everything else looks good but if in six months after i do all the drops and salves that she wants me to do doesnt work then she wants to put in punctal plugs.....ugh!!!!!

[LeoLady]

Hi!  If you do have the punctal plugs, it's not a big deal.  In fact, when I had it done, it was so fast and painless I asked if he was done.  Of course in my case, one fell out in about a week and the other fell out too and when he checked my eyes again, the doc said I had built up scar tissue which pushed them out!  So, no plugs for me.  I've been on Restasis for about 7 years and it did increase my tears from -0- in both eyes to 5mm in the right.  The left just went berserk and now drips all day and night but still is stuck shut in the morning.  Oh, the joys of dry eyes and pSjS.  Here's hoping you find a way to cope.

LeoLady

[Patze]

Hi Karleesgranny, I'm glad that the opthamologist is working for you and that's a big boost!  Congrats!


Patze

[Carolina]

Dear Sjogies:

The hard part for me about everything connected with this disease is that things keep changing.

One day my eyes are so dry, then one will be tearing up and wet!

For a while the sole of my right foot burns, then it stops, and something ELSE burns.  

I can feel pretty good in the morning and then suddenly it's as if I hit a wall or fell into a vat of cement.   I can note the  moment when I just totally collapse in energy.  It's so weird!

I think I can 'almost' get used to a pain that is regular.  My cervical spine (neck) has severe osteoarthritis, and the pain in my neck, shoulders and the back of my head is constant.  

But because it's constant, I can almost ignore it.  And it isn't a sharp or throbbing pain, just a constant strong ache.  If it came and went, it would probably be harder to bear, especially if it changed intensity as well.

Is that crazy or what?  

It's never knowing what's coming next and where it will be that makes me crazy.

For example sometimes the front of my face aches so much my teeth hurt.  Today I just took stock,and 'No' I'm not having that particular joy today.

The thing is that I don't NOTICE the places that don't hurt, and forget to be grateful for that blessing!  

Sigh.

We're going to have our two grandsons all day for the two weeks after they are out of school for the year.  They are 7 and 10, and their parents want us to be sure they do work books, play outside, swim, and stay busy.  In other words we mustn't park them in front of the TV or computers.

I understand that entirely, and feel that same way about TV and computers.  BUT it is so hard to keep them going when I just want to lie down and die!

Fortunately my husband will be here, too.  

They are good kids and I adore them.  But I must admit, now that I'm so besieged by this condition, I'm worried that I won't do my share to keep them busy.

I guess I feel that my husband judges me when I can't get up and around like I used to!   That may be true to some extent, but I am also projecting, I'm sure.

We had our two older grandchildren every summer for 6 weeks for 9 years.  And I was on the go with them all the time!  Every lesson, camp, and activity in the book, and major trips around the country.    I can't imagine doing those things now.

I just MUST take my own advice, take this a day at a time, and accept what I can do on any given day, and let the rest go.

Wow, I'm rambling.

KIsses

Carolina

[mac]

Hi Karleesgranny,
Glad you got to the Ophthy and got your dx affirmed.  Took me quite a while to get to one as I was out of town for months after my dx and out of 'service area' for my HMO.  I finally got in last month but she would not tell me how many seconds after drops...just 'severely dry eyes' with dried mucous stuck to corneal fibers.  Doing drops every hour (and she would not be upset if I did them every half hour, which I did) with ointment every night.  WOW, what relief!  In 10 days not all was cleared up but she hesitates going in to remove them surgically, so have gone with ointment when possible during the day and liquid gel when I can't use the ointment.  The gel seemed to begin the pain again so went back to using the Thera tears which seems not so hard to take, about every hour or two.  When in A/C I seem to need it more frequently.  I go back next week for re-eval. 
It sure is worth all the drops and ointments tho, so keep at it.  I have heard nothing about plugs yet and she is trying hard to stay away from chemicals like Restasis.  The ointment during the day does not usually affect me with blurry vision but if I am out in the garden I hate for the eyes to be all tacky from the oozing so choose not to use it.

Question for anyone...
Have you had the lower eyelid spasm and turn under?  Seems this is happening to mine and I can feel the right one trying to do the same but so far just the hint of spasm feeling, nothing I can see happening.  The left one actually turns under so that the lashes are scratching the cornea if I don't pull it down.
Anyone know the cause? 

Good luck with your joint pains as well!  Isn't Sjoggie FUN?!?!?!
Gidgie's Gammie

[colleen]

Hi,
I also had the plugs put in three months ago. it is very quick and painless however, I have no idea if they are still in. If they are then they are not working. My eyes have been flared up for sooooooo long now. I am just so ready for some relief. Good luck to you

Colleen