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Living With Sjogren's / Re: Restatis and allergy eye-drops
« Last post by cccourt1942 on Today at 10:03:34 AM »
Hi,
   Nothing hurts my eyes than allergies.  Even SjS.  For a number of years (prior to SjS dx) I was treated for what was called "allergic conjunctivitis".  It was SjS, but that's a different story.  The ophthal gave me  steroid drops to clear it up.  Of course, it would reoccur...but that's where YOU are!  The meds you mention are OTC for itchy eyes. I don't understand--do you use Restasis now? 

I ask that as once I was dxed with SjS, started with a knowledgeable ophthal, he explained the damage to my eyes.  He told me he would give me a steroid drop to help the burning the Restasis would cause.  (due to the condition of my eyeballs).  I showed him the eye drops I had used for about 5 years.  He announced what he was giving me was twice the strength. 

The med is Lotemax.  since you have SjS, you have to have an eye doctor.  Ask yours for the Rx (or his/her recommendation) for your tortured reaction.  It will calm the almost instantly.  The problem with this type of drop is you can only use the product for a finite period of time (I think about a week).  Then the doc will advise to use sparingly.  A tiny bottle can last me several years.  In fact, I've replaced the Rx numerous times when still half full.  I replace due to age of Rx.

Hope you find relief!
ccc

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ghost: I hope this does not come across as harsh:  you are in a lose-lose situation---unless you move, on your own accord and expense, to a new location.  As to treatment available for your condition, in Japan, you are correct it does not require large hospital /equipment.  However, it does require medications available to you which are not available in Japan---by law.  This brings you to another lose-lose situation. 

I believe I recall you purposefully did not bring SjS meds with you.  This was a choice you made.  It is unfortunate Japan does not have the approved pharmaceuticals you require to make you comfortable.  This is true in a number of countries.

I thought you had taken a job with the International schools or other Teacher abroad organizations.  When you say two Japanese individuals checked on your living quarters, etc, I can only surmise you contracted with a foreign entity.  After living overseas for 5 years, I have since stated, (re the USA) "it may not be perfect, but it's still the best place to be  and be from!"  :)

At your age, you have time to get your health under control and start on a grand adventure in your future.  As a long time SjS sufferer (UNDIAGNOSED), I recall the ups and downs of my health over decades.  I seldom sought medical intervention.  In my case, ignorance was bliss.  In your case, you know your diagnosis.  My mind would run rampant with what ifs!  Think about your safety.  It does not sound like the company/individuals for whom you work are vested in your position, your skills, or your health. 

Before you draw a line in the sand, go deep for answers.

Best to you,
ccc
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(((Hugs))) There is not much else that I can say. I know the culture is different but do not kill yourself over your job. I used a personal negative ion generator at one location to clear the air in my work area. I have several at home for the same reason.
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Living With Sjogren's / Restatis and allergy eye-drops
« Last post by Pete0211 on Today at 09:16:05 AM »
Does anyone use allergy eye drops (Ketotifen / Zatidor in particular) along with Restasis. My eyes are driving me crazy from mowing the lawn earlier today, and I do not see any indications of problems in my searches, but wanted to double check before potentially melting my eyeballs :)
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Living With Sjogren's / Vestibulodynia?
« Last post by oescharao on Today at 08:42:02 AM »
Hello to my fellow ladies,

I've been grappling with recently diagnosed vestibulodynia this past year. I have forever had issues with annual exams and sex, but it was a long time before an obgyn finally pointed me in the direction of a pelvic floor specialist.

Has any one experienced vestibulodynia? Or some other kind of vulvar pain? I'm beginning to wonder if there's any linkage to Sjogren's.

Additionally, has anyone considered or had the sugery? My doctor is beginning to consider it.

Thank in advance and hope everyone is well!
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I don't know where to begin, but I need to vent this cause its infuriating.

So I moved to Japan. My company put me in an uninhabitable apartment that I'm allergic to and I've had anaphylaxis 4 times. I went to my company and told them I need to be moved to a different apartment. About a week later my boss called me up and said that he and another boss were going to be in the area and they wanted to just check in. I asked if they were checking in with my coworkers in the  area as well(they live in my building) and they said no. So I became very suspicious as to the true nature of the visit. They came to my apartment last tuesday and started asking about my health(cause one of the bosses didn't know of my health conditions) and they beat around the bush and I flat out asked what they were getting at, and they told me it would be best for me if I moved back to America. I was like What?? I don't want to go back to America. They replied well you can either move back to America or move and find a new job. They said it had nothing to do with my job performance, I was great at my job, and was solely due to my health. They just kept repeating that this would be best for my health as though I'm a child that can't care for itself. As though they, 2 middle aged men, that didn't even know what sjogrens or anaphylaxis were, knew more about my body and my health than I do. They kept going on about how I needed a big hospital with lots of equipment, even though I kept saying that was not what I needed. All I needed was an apartment that didn't have a mold or bug infestation. To which they told me I have a standard Japanese apartment(which is not true, even my coworkers apartment in my same building is of considerably better condition than mine)and that there are no available apartments in my area(which again is not true). They wanted an immediate response as to which choice I was going to choose, and I told them I needed to think about it. They then gave me three days to give them a reply. On Friday I told them I knew they were discriminating against me and I wanted to stay right here, because I really like my job. They told me that this was complicated and that we should meet in person this week. Today they sent me an email telling me to go to my headquarters first thing in the morning.

To clarify, I have missed 2 half days(that I covered with my sick days). Neither of which was during my actual teaching time, but rather my free periods in the afternoon. One being the first time I had anaphylaxis and the second was a scheduled test results visit. My health has not affected my job at all.

This is all such nonsense and its stressing me out.
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Living With Sjogren's / Re: Sleeping 8 hours with sjogrens?
« Last post by WhatYouSjo on Today at 06:48:13 AM »
I find a good night's sleep to be one of the most significant correlations to my health. If I can get 7+ hours of sleep regularly, I tend to feel reasonably well. However, a night or two of less than 6 hours usually sends my health downhill, and less than 5 likely triggers a flare.

I find stress reduction to be very important; I do my best to work out any potentially stressful issues in my head before I head to bed. I'm sensitive to outside stimuli, so a face mask and earplugs help a lot. I have a humidifier by my bad. I also find that CBD oil in the evening leads to much deeper and longer sleep. I have (fortunately) never needed any prescription sleep aids.

I strongly recommend using a sleep tracking app on your phone, ideally with a wristband or smartwatch that can monitor your movement and heart rate. The app I use lets me add little notes each night to track what treatments I'm on and any unusual occurrences. I've been using it for years, and it has helped me better understand what treatments are helping me to sleep and what triggers give me a poor night's sleep.
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Living With Sjogren's / Re: biofeedback?
« Last post by Sharon on Today at 03:25:02 AM »
I tried it years ago before the SS when I was having IBS and CFS symptoms.
It was really interesting and I continued for over 40 sessions.
It did help with muscle tension I wasn't even aware of, but it probably depends on what the source of that
muscle tension is. With me it had been stress so the biofeedback helped.
I'm thinking of going back to biofeedback since it was one of the few things that actually helped with something over the years.
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Living With Sjogren's / Re: Glandular pain?
« Last post by Sharon on Today at 03:20:09 AM »
Thanks guys.

irish- The neck gland swelling is happening like clockwork every evening.
Do you think it's worth taking antibiotics to see if it helps?
How do I know these aren't signs of lymphoma?
I feel unwell all the time with various symptoms so it's hard to know what's what.
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Living With Sjogren's / biofeedback?
« Last post by Puzzled on June 25, 2017, 10:07:07 PM »
Has anyone tried biofeedback?  I seem to have every muscle in my body tighten up and I feel like the tin man.  I seem to have a Rheumy who thinks I should try this and I was curious if any one had tried it and had any decent results.  I don't know anyone who has tried this so I'm not sure what to think. 

Thank you

 
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