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Living With Sjogren's / Re: Article about SJS and Food sensitivities
« Last post by irish on September 12, 2019, 10:06:39 PM »
Judie, I am wondering if there was a reason for having such an intense bowel prep? I had 3 bowel preps in 2 months last fall and one this May and I have to eat light for several days and then liquid for so long and then have Golightly 1 gallon in a divided dose the evening and early morning before. Those preps knock me down a lot also and especially because I was anemic due to bleeding of my arterial venous malformations that I needed lasered 2 different times.

I can't imagine having such a stringent prep. I would be laying on the floor. Thanks Irish
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Living With Sjogren's / Re: New York Times Sjogren's Article
« Last post by Deb 27 on September 12, 2019, 05:37:05 PM »
I was just going to sign in to chat. We will miss you. Sorry about the colonoscopy but at least it's behind you now??? I hope there is some comfort in that.... And hopes that the flare will go away quickly......!!!!!!!!!!

Will you get any biopsy results soon??

Take care!
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Living With Sjogren's / Re: Polymyalgia Rheumatic: new diagnosis?
« Last post by Liz D. on September 12, 2019, 04:15:48 PM »
I know at least two people with this.  Both were put on prednisone for awhile and have since done very well!

Liz D.
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Living With Sjogren's / Re: Dentist recommended new product called "NeutraSal"
« Last post by Deb 27 on September 12, 2019, 03:54:45 PM »
Ok so this post is four years old and a dentist just told me about this!!!! I went for a consult about an extraction and told this dentist I had Sjogrens. He was so nice and told me about this.

Is anyone else using it still??? Is it helping you at all????

I wonder if it doesn't help with dryness if it would help prevent cavities. I am having to get a tooth out because the crown and root canal decayed. I need to try and do something to help preserve my teeth. I wonder if this is really pricey though? I tried to use a coupon the other day for some name brand estrogen and it was still $100. Such is our life anymore with name brand drugs. Can't afford them!!! I am at least going to look into this.
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Living With Sjogren's / Re: New York Times Sjogren's Article
« Last post by araminta on September 12, 2019, 01:48:43 PM »
So sorry to hear about your difficult time, I hope things start to look up for you now and that you get some relief from the pain.

Thank you for the link, it does underline how diffuse the symptoms are.   I always feel like a hypochondriac when I try to describe how many things are going on!
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Living With Sjogren's / Re: Article about SJS and Food sensitivities
« Last post by Judie P on September 12, 2019, 01:43:21 PM »
Hey, Deb.  My biggest Sjogren's problem is intestinal.  Wow, it has helped to be off dairy for a while.  However, the trauma around having a colonoscopy, which required a low fiber diet for two days (no fruits, vegetables, beef, nuts, etc.) of pureed white stuff, 3 days of clear liquids, 3 days of taking Gavilyte (5 times, 2.5 gallons total), no sleep for days, and a lot of gas, my intestines have not been right since.  Hate it. 
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Living With Sjogren's / New York Times Sjogren's Article
« Last post by Judie P on September 12, 2019, 01:37:34 PM »
My co-worker brought this in to me last night.  It is a great article in the New York Times about the challenges of Sjogren's. 
https://www.nytimes.com/2019/09/09/well/live/the-challenge-of-identifying-sjogrens-syndrome.html  If you cannot use this link, just put in "Challenges in Identifying Sjogren's Syndrome, New York Times.  It was printed on September 10th.

I will miss, once again, our Thursday chat due to a genealogy speaker/presentation.  However, I want my chat friends to know that last week, after a 5 day ordeal of low fiber foods, 3 days of clear liquids, and 3 days Gavilyte (2 gallons), my colonoscopy shows I had one polyp (removed) and a lot of internal bleeding hemohrroids.  I will get the full results in October.  Since I was not able to take any anti-inflammatories (Naproxen before and seven days afterwards), I am in much muscle and nerve pain.  Tomorrow I get to take them again and hopefully I will be able to function again.  Colonoscopy did put me in a flare up.  Ugh.

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Living With Sjogren's / Re: Polymyalgia Rheumatic: new diagnosis?
« Last post by irish on September 12, 2019, 12:50:09 PM »
My mother in law had this and she was on steroids for over a year and it decreased significantly. The doctor told MOL that this condition can sort of burn out or go away. WE can hope this will happen for you. I would guess that you have more pain because of your other health issues. Hope things improve soon. Irish
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Living With Sjogren's / Re: Very disappointed in my Rheumy's office
« Last post by irish on September 12, 2019, 12:47:32 PM »
Do you have PACs in your doctors office? Many times the PAC's seem to take more time and listen better and people are happier.
Also, have you tried seeing internists in a college setting rather than rheumatologists. Rheumies are in short supply all over the country. Doctors are in short supply. I can't believe how the internists are decreasing ay my clinic. We have quite a few Family Practice and more and more Pacs.

From my perspective as an old patient and RN I think it is the government who is wearing the doctors out with so many rules and regs and tons of paperwork. If you have to document it once you have to do it 5 times.

Another thing that I can see......years ago back in 60's and up the regular practice docs staffed the ER 24/7 and the specialists took turns being on call for emergencies. These docs could end up going without sleep 36 hours as they had to work and see patients during the day. These guys still had their paperwork (not as much) plus they were husbands and fathers too. Also came the specialist groups like Spectrum , etc that hired doctors who were contracted all over the US to cover E. Rooms. Many of these groups cropped up. These docs spent a lot of time on planes traveling to their next job. Sort of a good job for docs if they liked it cause they could hire on for maybe so many hours a week and have more time at home.

It also took many docs away from a clinic practice, but many of these docs they hired were new grads without families so they could make good money covering ER. This also increased the cost for the hospitals and the rush was on to keep in the black. So you can see where this takes us. No more regular docs working ER which turned out good as the rules and regs were now taking up the regular docs (who used to cover ER) time. This also brought on the specialty of ER for docs plus the Hospitalists.

 All the regular clinic docs used to make rounds at the hospital twice a day besides clinic hours...that came to pass also. So the hospitals also have the increased cost for the hospitalists 24/7 who take care of the hospital patients.This also caused the hospital patient to not see a doctor who knows them during their entire hospital stay.  The practice of medicine just expands and our population gets bigger, the technology of medicine gets bigger and demands more specialties such as IVIG, Dialysis, etc.

It is like a big beast that is necessary but one that no one knows what to do with. And then, there is the government...needed at times but not the answer to all problems. I digress...and on and on. But maybe this helps explain a little of the way the fingers of medicine expand. A very simple homespun observation and by no means a political opinion.

Vrystaat, sorry I got off on a tangent...again. Hope you can get some resolution to your dilemma. Irish
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Living With Sjogren's / Re: Very disappointed in my Rheumy's office
« Last post by vrystaat on September 12, 2019, 11:42:59 AM »
I also had this happen to me this week. After traveling 2½ hours to my Rheumy through heavy traffic, I was astounded to find that my appointment was for the next week. I didn't believe them, because I take a lot of care taking note of the times. In my medium sized town, two busy Rheumatologists relocated. We now have only two competent MD's for over 250,000 people. There is a huge shortage of Rheumatologists everywhere in California, and this together with a shortage of IVIG makes for an impossible situation. Unfortunately our local Academic Rheumatologists are not very good and fuss about asking for more & more tests, & never doing anything. Many are super-specialized and don't treat Myositis and/or or Sjögren's Syndrome.

We'll keep trying.
Good luck to all of you.
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