Yup. It's sjogrens

Hi Sherry ~

I was dx'd with sjogrens in 2012.  I have undergone test after test and I was a candidate for the prose lenses.  They have changed my life in so many ways.  While I cannot wear them when I have flare ups, when I get to wear them, it's like life with sjogrens never existed.

Perhaps if you're still dealing with dry eyes (extreme dryness, I'm saying) you could also be a candidate for the prose.  My eyes were so dry that the lids would actually stick to the eyeball itself, causing damage to the cornea and having to have "bandages" put in place so an infection wouldn't set in.

It is my hope that you're doing better since you last posted.  Let me know ?

Frustrated

Hi,, sorry I've not been on. Things have not been so great ,, been in and out of hospital mainly with lung infections. The last time just an " episode". Feeling awful at the moment tired , aching joints , lost a lot of weight as unable to swallow too well , had a positive test on both eyes last week ,, had a lip biopsy done ,, struggled over this as lots of negative comments on line but figured couldn't hurt and anything that is going to help treat me well ,, it can't hurt. 

I'm really struggling at the moment. I just feel like I've lost me !! Along the way. Not back at work yet ,, aiming to get there in jan !!!  How do you feel better with this awful disease !! Had all my hair cut off as I just couldn't cope with the pain anymore !!! So. Sorry this post is not as negative as I usually am. All comments helpful. And I know. I need a kick up the bum. I'm just too tired to give myself a telling off right now haha xxx

And please please please can anyone recommend a Dr that can help !!! I'm so frustrated at being put in hospital on wards with staff who have no idea wat to do with me. I find this so frustrating and also a lack of respect. I am an intelligent woman who feels like I'm treated like some sort of fraud or fool. I can assure you I just want my life back !! I detest the amount of tablets I'm on ,, I feel like my body has let me down. I've gone from such a happy healthy person to a shadow of my former self and by God I fight everyday ,, I get up get dressed put my face on !!! And then I'm exhausted n have to go to bed for around six hours to get over it haha !!! God u have to laugh. It's the one thing I still have !! How long before it takes that from me too xx

Hi Ally ~

First, where are you located?  Second, these autoimmune disease do not seem to have any purpose but to bring us to our knees.  Do not feel badly because you're having a difficult time and cannot "kick up the bum" because it takes time getting used to the idea that things have changed.  Believe me, I appreciate what you're saying.

I've been doing some different healthy "smoothies" and "juicers" as per recommended by previous discussions here.  They are helping in ways I hadn't ever thought they would.  I'm just coming off a few day stint with some kind of a bug...well, hell,  the truth, it's my sarcoidosis that's bringing my body down and trying hard to keep it there. 

You said you breathing is compromised at present.  Have they given you any oxygen to take home to at least try to sleep at night?  Perhaps if this is an area you're lacking (sleep) you might want to ask your doctor if they can have someone test your oxygen levels while you sleep (sleep study) or a quick study which I recently had on an overnight stint in the hospital and that determined that I did need some help at night.  It has gotten worse, but that's only because my sarcoidosis and sjogrens is active presently.

Hang in there.   Things will get better.  Just remain pro-active and if someone seems to shut that door on you w/o answers, then go bang as hard as you can on another one until they hear you!

Keep me updated with you situation.  I hope, if anything, I can be of some help or comfort to you!

Frustrated

Made me cry !! Thank you for listening. I'm in Crosby. Liverpool. Xx

Well. If I could cry !! Haha. At least my maje up doesn't run anymore ! Xx

Hmmm, In Liverpool. I wish I could help you with a doctor referral but I'm def. not from that area.  However, hopefully someone will pop in and join your discussion and have something to say about that!

I do have to say one thing, Ally, that is, you seem to have kept you sense of humor! Kudos to that! W/o humor life sure would be dull and uninteresting. 

Again, keep me informed as I would like to be a support to you and you to me.

Frustrated

Thank you for your kind words ,, here anytime. Well,, as long as I'm not in hospital or collapsed in bed or just generally spaced on enjoying my brain fog !! Haha yes I am clinging onto my sense of humour actually fighting for it !!! 

💕💕💕

I'm happy to hear that as both of us know, sometimes we just cannot muster up anything that seems humorus!

WIll post later!

Frustrated Xx

Hi Ally ~

It's been a long few days/nights, but I'm feeling a lot more rested these days.  I'm hoping you are doing well, how are things going?

How old are your kids?  They sound like my grandkids, busy, busy up to the last little "sigh" before falling into a blissful sleep.

Anyway,

hope to talk soon!

Frustrated

My eldest is 26. Boy. Then 21 girl then 15 boy n 11 girl. Every five yrs haha my mum bought me a puppy n then five yrs later we have just bought a second !

Yup it's been a hard week this week. A lonely one saying goodbye to my old self I guess n accepting the new ME ! 😘😘😘

How are you ? Are you feeling ok xxx 

wow!  on at the same time!  My eldest is 36 (4 kids and 3 step kids ages ranging from 2 to 15) and my youngest 30 has her first this past week! He's a week old..how it goes so quickly!

I'm sorry your week  has been so hard on you and yes, saying bbye to the old self is somewhat bittersweet.  I used to like the "old" me but I do look forward to the "new" me and hopefully sooner than later!  I believe with the support system here at this site, will be of the utmost help!

I'm tired today as I just returned from a very long appt and the sitting, standing etc just didn't relieve any of my pain (back and legs) my eyes were a mess when I got home but I'll be fine after I eat and draw down for the night!

Hopefully, you will continue to have many more weeks then months then years (can you imagine!!??!!) of good health and feelings.

wwl

Frustrated

Ahhh. I hope. Well it can't get much worse so can only get better !! Nothing worse than a day of hospital. Have a lovely bath , rest and relax take care and thank u so much for listening. That awful feeling seems to be lifting slightly. I think it might be time to go try adapt my life to rhis disease rather than fighting to keep wat I had 😘😘😘😘💕

It's as if I wrote the above words, I more than know what your going through! I feel like maybe I could just throw all the drugs I take some days out of the window. I have stupidly (my family told me)I thought well they dont seem to help so i stopped the painkillers only to suffer with more pain. I just want my old self back... I was always on the go hoovering in the garden, walking lots & shopping. Had lip biopsy & was told by Rheumatologist it showed dryness but neg in sjogrens. Calling my symptoms Sicca, and put me on drugs same as if it was positive. Half of me wanted a tag I could put on my ailments, otherwise I sometimes feel I haven't got a proper reason why. Sorry for my neg comments, but on a lighter and happy note I absolutely love where your from,they are my footie team and I love them. Good I suppose for all of us to find things to make us smile!!

Babycham ~

I can't blame you one bit for the confusion your doctor is doing to you.  Telling you NO you don't have it but here, take these anyway!  Who on this good green earth wants to put poison in their body if it's not needed.  No offense, but I'd see another doctor as clearly this one isn't for you and your health.  That's just nuts!!

Good Luck, babycham!

Frustrated

Also, babycham the Yoga International has  7 poses that help with sciatica.  That is such a large nerve, if you think about it, it's the size of your baby finger and leads from the buttocks to the ankle..it's a tough one to fight through but if you have a little mobilitiy, perhaps a few yoga positions could help!

Let me know, please?

Frustrated

Hi she is supposed to be a highly thought of in  Sjogrens circles. But is frustrating, she gave me tablets, have to keep getting blood tests on them.My eyes are not good at moment i haRhemy 

Hadn't meant to send that don't quite know how that happened!!? Anyhow right eye is worse, four drugs for them now I have! Have trouble remembering what's what. Sorry I must sound very self self self! Hope your okayish at the moment, not sleeping good though?

I h

I feel quite fortunate readi

Rhuemtoligist said the test might not be sensitive enough so she is treating the symptom's. Does anyone else feel like me or not: I spend my life telling my family how sorry I am for resting yet again, for not doing things that need doing in the house, for moaning when in pain.They get cross telling me to stop saying sorry all the time but I am. 

Oh is anyone else on hydroxychloroquine? Maybe she took notice of my family history, my brother died at 55 (2 years ago) with lupus which is similar.

Hi. Sorry. I did just stop. I Just struggled and had nothing positive to say. This disease along with the others that come with it are just bum !!! Haha

I now also have fibromyalgia to add to the list !! Angry frustrsted by the consultants lack of care or knowledge !!!

And just in so much pain !!

I hope you are well I hope no more flares for you. Sending love xxxx