Hello evetyone. My name is Sheila and i live in Tennessee. I am a 51 year old mother and grandmother. I have been very active all of my life. Seventeen years in Martial Arts, 10 years in law inforcement, then after having my last child at forty two i was diagnosed with Hypothyroid. Everything was going fairly well until a year ago when i started having joint and muscle problems. In Feb of this year i broke down and went to my doctor who sent me to a Rheumy. I was having so many problems with my eyes at the time, but he seemed more concerned about other issues. I tested positive for Lupus and R. A and he said fit the criteria for both. He prescribed Methotrexate which i refused so i ended up on Plaquenil and Prednisone. One week into the medications and i had blisters break out inside my eyelids[which i still have after all this time]. I went to my eye doctor who diagnosed me with SJS. I was given Punctual Plugs, Restasis,systane and genteel, which at the moment being in a huge flair, i am still using all.
Its good to have others who understand the frustration and pain of all the Autoimmune problems. I have a very supportive and loving family, but they just dont have a clue why mom doesn't act like she used to. When your eyes hurt it seems like your whole body feels bad. Anyway, Thanks for having me.
Welcome craftkeeper. With "Dry eyes, mouth, skin and A$$" you have acquired another AI disease. They prefer to run in packs and tend to invite their friends. I am glad you are able to take Plaq. and you may want to re-think MTX. I have severe negative reactions to these two meds so I have had to use supplements and other methods of treatment. You can research these from my signature.
Hi Sheila, it's nice to meet you. So sorry about the diagnosis.
We all hope that you find some useful info here as we believe you will.
Hi Sheila :)
Welcome to Sjogren's world. I'm sorry you are having such a hard time. Blisters inside the eyelids sound excruciating. It must be very hard to have been so active and to suddenly have this all happen.
I hope you find the site useful. It's certainly friendly and supportive.
Take care - Scottie :)
Hi Craftkeeper, and welcome to Sjogrensworld from a fellow Tennesseean. I hope you find help and support here!
Cheryl
Wecome to the group! Glad they got you diagnosed quickly. Most of the Sjoggies take a LONG time to get a firm diagnosis. Me = 6 yrs. Also glad you have supportive and loving family. Some of the folks here do not have that either. I don't have family but I have 2 good friends and some cousins that I am close to.
Sorry you seemed to get hit all at once. Autoimmune is strange. Mine has creeped up on me through the years (so drs say) and is now getting more on symptoms, etc. I don't take meds for SJS but have 3 -ologist on my staff watching over me.
Lots of info on this nice and good folks. Welcome!
Thanks to all of you. I have just been pouring over posts on the forum and already have learned so much. It really does help to have people to talk to that are in the same boat.. It has been fairly nerve wracking to have all of the wham me at once, but i guess i am very lucky that my doctors did give me such quick dx's.
At first i thought the blisters in my eyes were a reaction from the Plaqueni, but my eye doctor told me it was either the Lupus or the SJS. I have had one big one in the corner of my right eye since Feb that wont budge. My doctor doesn't want to lance it for fear of infection, but he may have to.
I may have to rethink the Methotrexate, but the side effects list terrifies me. My oldest daughter who is a R.N fusses at me because she says everything has side effects, but then again she's a Hopice Nurse,LOL.
I have a horrible phopia of medications due to my mother being a presciption drug addict and dying from organ failure because of it. I refused Narcotic pain meds just a few days ago at the E.R. and the doctor looked at me like i was a Alien from another world. Then he gave me two moltrin and five baby asprins and charged me 18 dollars for it!
But anyway i try to stay as busy as my body will let me at my art,to keep from losing it.. I am a Halloween artist and do all types of crafting, not to mention caring for my youngest who is 10 years old so i guess life goes on.
craftkeeper, Carrot Juice (I get bottles of it fresh from costco or the local cub "supervalue") is what your body needs to create endorphins. Endorphins are your bodies own pain killers and they are a thousand times more potent than morphine. You can use Hand, Foot, or Body reflexology to target endorphin release to specific areas of their body.
My Breathing meditation can help with pain management. I had a root canal with that once since the Novocaine wore off. It is very simple:
Find a comfortable position and close your eyes. With your eyes closed, look to the top of your head.
Breathe in and think "I am"... Breathe out and think "calm"
It does take some practice but it does work.
Are you taking Alpha or R lipoic acid and Acetyl L carnitine?
Hi Craftkeeper - welcome to the SjS World family.
I'm glad you are finding helpful information here. There's lots and lots to read! :o :D
One thing you will find among the posts that you read - Sjogren's is what we have - don't let it define WHO you are. Yes, our "old" self is not the same any more - we will have to find ways to adapt to our "new" life.
We Sjoggies (as we call ourselves) have a whole slew of new products that we've never had to use prior to our Sjogren's dx. Like any products - it's all a personal preference. One product a person just loves, another hates. Find what works the best for YOU.
<<I am a Halloween artist and do all types of crafting.>> That sounds interesting. We have a bunch of talented people here.
Take each day as it comes. Keep putting drops in your eyes and remember to "blink". Many times when people are sitting at a computer they stare at the screen and don't blink as often as they should.
Take care,
Bucky
Hi Sheila!
Let me also welcome you the SJS World and family! Please look around when you can as there is so much information in the ether's (by using the search engine in the upper left hand side of this page) that I learn more from the wonderful members here than from the rheumy.
If you can't find an answer there, please don't be bashful and ask away as there is usually someone about that might be able to help.
Take care of yourself -
Patze
Hi Sheila,
Welcome to the Sjoggie forum! :D Sorry for the reason you found us, but I think you'll find this site very informative and the people very kind and helpful. And we understand what each other goes through daily...such a big deal since many people cannot understand.
You're right; when you eyes are painful, everything hurts. I can also relate to everything hitting all at once. That happened to me over just a few months. I went from being a 53-yr.-old woman in excellent health with lots of energy to being a chronically ill person.
That was 2 years ago, I was fortunate to be diagnosed fairly soon and I've greived over the "old me" and (mostly) adapted to being the "new me." ;) I've learned that the new me is someone I like ok. I continue to try to do what I can and not let my condition rule my life.
I certainly hope your eyes begin to heal soon! I'm glad that you found us. Please ask anything or bring any concerns here anytime. We support and encourage one another.
Take care,
Melinda
Hi Sheila and welcome! I'm pretty new here too but have found this to be the greatest forum ever! The support here is tremendous. One of my favorite things about this site is that everyone shares their suggestions and opinions with NO judgements. We are all so similar but also so different so you will get a lot of good ideas here! I think its good to try the Plaquinel first and see if it works for you but there's lots of opinions here for you to read about and then do what works for you! Carie