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Living With Sjogren's / Re: Sleep apnea and CPAP?
« Last post by irish on Today at 09:32:33 PM »
There are so many new products to use instead of those old masks. I hope that you can find something that will work. Good luck. irish
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Living With Sjogren's / Cannabis and your eyes
« Last post by Sharon on Today at 05:16:31 PM »
Can anyone please share how cannabis has affected your eyes?
Has it helped any with eye inflammation or dryness?

I'm specifically asking about taking it through means other than smoking
(such as oil, edibles, pill form...)
since of course smoking in itself can dry you out.

THANKS!  :)
 
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Living With Sjogren's / Re: Why are my cuticles shredding? CONCLUSION
« Last post by Sharon on Today at 05:10:44 PM »
I have tried rubbing progesterone cream on my eyelids (Emerita) at night quite a few times
and always get the same result:
I wake up with my eyelids extremely swelled up.
Eyes remain dry.
At first I thought this was an allergic response to something in the cream.
However I now believe it is because the progesterone causes my eyelids to retain fluids.
Unfortunately, those fluids remain in my eyelids and don't travel downwards into my eyes.   ???

I am wondering: Is there such a thing as progesterone eye drops (which are administered directly into the eye)?
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Living Life In Spite of Sjogren's / Re: Talking about the weather in 2019
« Last post by Bucky on Today at 04:34:28 PM »
Irish - I can totally understand your comment, "Times like these do not make me pine for the expensive items on line but cause me to yearn for the simple life of years gone by."  The older I get, the more I understand the comments made by my grandparents and parents of how much things have changed since they were young.  I've seen for myself a lot of change in my lifetime.

Carebear - um, I hate to tell you that a mud facial isn't done with loose dirt blowing in the wind!  LOL

The last few days the storms have been relentless throughout the U.S. There were almost 60 tornadoes between Monday and Tuesday, more have happened today and are expected tonight.  Here in Central Illinois, we're under a tornado watch until 11 p.m. tonight. 

By Tuesday morning Denver, Colorado had 3.4" snow and a little Southeast of there in Black Forest they had 20" of snow, and another town Peyton had 18" of snow.  :o

Swift moving floodwaters was common in Oklahoma & Kansas. There have been many water rescues from people driving across a flooded road.  Sadly, one person died when they made a poor choice of going around a road barrier - a senseless loss of life for ignoring the barrier.  As I've said before, the barriers are there for a reason.

It was sad to see the homes in Oklahoma swept away in the flooding rivers.

This weekend triple-digit heat will challenge long-standing records in Southeastern U.S. starting on Friday.  On the flip side, it will be unseasonably cool for the far Western U.S. from California to Arizona over the weekend.

Wherever you are, stay safe.  What's the weather like where you live?

Bucky
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Living With Sjogren's / Sleep apnea and CPAP?
« Last post by Deb 27 on Today at 08:35:25 AM »
Does anyone here have sleep apnea and using a CPAP? I went for my CPAP sleep thing last night and did not tolerate it well at all. Like a lot of people, I couldn't fall asleep with that thing over my nose and mouth. Also, after about 30 minutes after wearing the mask, I had really bad sinus congestion. My apnea was in the severe category, so it sounds like the appliances are out. I have propped up the head of my bed but that might not take care of things with severe apnea. I stop breathing 34 times an hour.

The respiratory therapist recommended I take some sinus meds and also something like Lunesta and try it again...... So frustrating!!!!

Weight loss doesn't seem like a realistic option for me. I swim, eat right and I am still overweight.
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Living With Sjogren's / Re: Why are my cuticles shredding? CONCLUSION
« Last post by bluegardenia on May 21, 2019, 04:01:27 PM »
following Maria suggestion I also use progesterone cream. pro gesta by emerita. I bought it on amazon. I am quite scared about hormones so I use less than Maria but I noticed some more moisture
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Living With Sjogren's / Re: Concretions
« Last post by Scottietottie on May 21, 2019, 03:52:55 PM »
Awww - Thank you Irish.

I think we joined up here about the same time. A rheumatologist had diagnosed meand it was a settled dx for 6 years. Then I was sent to a different rheumy who sent me for a lip biopsy which was negative. He never took the SjS dx off my notes but he said it was more like I was on the 'autoimmune spectrum' somewhere between SjS and Lupus.

I know I've found this site invaluable.  :)

Take care - Scottie  :)
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Living With Sjogren's / Re: Why are my cuticles shredding? CONCLUSION
« Last post by irish on May 21, 2019, 12:48:08 PM »
Maria, I had to laugh at you thinking of drinking horse pee.......never heard that on this site before.

I think that you should get ahold of some researchers and share your info with them. Took one person and a few months with on and off days of the oil. Probably they will think it is not very scientific but I sure as heck do. Good for you. I would assume that keeping the oiol out of the eye is a good idea.

Also, I am wondering if rubbing oil on any place ono the body would being about the same results. Irish

P.S. I am assuming you used a progesterone oil....can you tell us what you did use and how a person can get it. Over the counter, prescription, etc.
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There are nerves that run across or through our bottom (genital area) that can causes a neuropthy. I am trying to remember what some of our past members have suffered from. I am thinking there is a neuropathy of the pudental nerve.


You will have to do some searching to find this out. Plus asking your doc could help. So many of our ailments are not always suffered by those without autoimmune disease. Do not rule out neuropathy when you have aches/pains in different areas of the body. Nerves run through us like a highway system. Good luck. Irish
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Living With Sjogren's / Re: virtual reality?
« Last post by Confused on May 21, 2019, 10:21:06 AM »
Sharon, I don't know anything about biologics.  I think there something needed to curb the inflammation until there is a way to perhaps stop it or a way to control it which I think might take a scientist or several working to find answers.  I do know it is hard to get money that is needed for the research.
I had not heard of the virtual reality before which was posed to me and I was just trying to find out if this was a way that worked or not.  I often find I don't react as others would as far as medications go.

Whatever you try let us know how it worked for you and if you found any side effects.

Thanks
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