Recent Posts

1

Living With Sjogren's / Re: The COVID vaccine

« Last post by meirish on January 20, 2021, 07:43:23 PM »

The Astra-senaca is a one injection vaccine which is much more interesting to me.

Also, I was under the impression that the other vaccine to come out soon was by Johnson and Johnson but saw another site that called it Jaansen. If anyone has the answer to this one I would be glad to hear it.

Also, the OB-GYN age 59 from Florida passed aways recently from a brain hemorrhage. He had no medical history and took no medication the way I understand it. He got the first flu vaccine and 3 days later had red spots on his body. Knowing that this was not a good sign he went to ER and they put him in ICU immediately after blood work. Apparently he had little if any platelets in his blood. They worked with treatment on him for many days and were almost ready to take his spleen out when he had the brain bleed that was very significant. I can't remember if he had the Pfizer or Moderna vaccine but they are the first two to come out that are made by the new technology.

The talk is now whether to blame the vaccine and of course they probably won't. However, I am sure that most of us feel that this is something we really need to have a good diagnosis and need to know just what is going on. It seems like we get a little info here and there that doesn't seem to answer all our questions. Now, I may have this all wrong, but I am telling the information as was given by medical person.. I have no way of knowing just who is giving opinion or truth. Best all of us can do is keep track of the information that is out there. Thanks and good luck all. meirish

2

Living With Sjogren's / Re: The COVID vaccine

« Last post by Nomad on January 20, 2021, 04:03:18 AM »

Jazz lover...Oh yes. One thought I have is to wait. A friend of mine who only has ITP, but a very bad case with often very low numbers, and was a nurse but simply couldn?t work anymore ...said that she was hoping new information and new vaccines down  the road will be safer for  us. Of particular interest to her are the ones with one inoculation. But see below...

Meirish...regarding blood clots... believe me this was hard to believe for me when I got the Dx...but I also have what is abbreviated as APS. It is anti body associated with lupus. AND the number one concern with this antibody is it can make you CLOT.On the positive side, the APS (clotting antibody) knock on wood has NOT been an issue fir me...thank goodness. Doctors and I through testing are just aware I have it. The ITP (low platelets) has been a big problem.

 I? ve met a fair amount of ITP patients with both And a lot of Lupus patients with it. THAT potential clotting issue alone concerned me re this virus and this vaccine. But it?s a good sign ( thank goodness) that I haven?t clotted yet.  But when that doctor died of A sudden bizarre case of ITP I was stunned. Right now my ITP is active. And I?m taking a powerful newish medicine. My hematologist has to be careful not to over Medicate me because on the flip side if my body is artificially pushed to produce too many platelets than the APS will kick in and I could (perhaps likely) get a clot. I am living in bizzaro world right now. I have thought of locating an expert on blood disorders and seeing if I can get a conference/zoom type call.

I agree with the above poster who said this is a hard decision for folks to make. And a very personalized one. If I didn?t have these oddities, I would me MUCH more inclined to take it. And I might still..but feel I have to wait.

I do hope folks who are concerned for health reasons and delay taking it or decide not to take it are not penalized....like for travel.  Perhaps a very recent Covid test before traveling would suffice. Very difficult times we live in.

3

Living Life In Spite of Sjogren's / Re: Fall / Winter - perfect crock pot season

« Last post by Kathy57 on January 19, 2021, 10:15:12 PM »

Irish,

My mouth started watering just reading your last post!  That pork steak recipe sounds amazing.  I was trying to imagine what it tastes like - could almost taste the cooked apples!😂. Anyway I think I put a pound on just reading these recipes! 😂

We are in Houston now and my husband is going through a phase two cancer trial at MD Anderson.  We rented a nice apartment walking distance from the Clinics.  I have been feeding him very well and his appetite is very good.  Since the weather is nice, we have been going for an hour walk when we can.  Jim gets fatigued and does not always go with me.  It has been cold, icy, and snowy in Illinois where we live, but 72 degrees here.  I am LOVING the weather here.

But I am not losing any weight!  Jim has been maintaining which is good.  I am going to have to try harder, but cooking and eating is so much fun.  Let?s plan on losing weight next year.  😉

Kathy

4

Living With Sjogren's / Re: Heart issues .. connection to Sjogren's?

« Last post by Spring on January 19, 2021, 07:52:03 PM »

Our son had covid 2 1/2 weeks ago and they are telling him yes, get the vaccine, but wait 90 days or more.

5

Living With Sjogren's / Re: The COVID vaccine

« Last post by meirish on January 18, 2021, 09:42:58 PM »

There have been others who have had similar issues as the doctor from Miami but but have not died. A recent doctor said that the vaccine (at least the 2 that have come out) are new technology and the research is showing that some of the side effects are the development of autoimmune diseases. If you do research you will find that blood clots are one of the most prevalent side effects that have caused death in people. They have found that people develop clots in the small vessels in the lungs and the heart.

I am not trying to be a scare monger, but we must all be educated as to what is going on with these vaccines. The more they have given the more issues seem to crop up---which is understandable, but the reporting of things isn't as good as one would hope.  I also heard a doctor say that people with many health issues and autoimmune issues should be more careful about rushing into the vaccine. This is when I made my mind up for sure that I would not take it but wait awhile. I have 5 autoimmune disease and I can come up with these on my own and don't need a medication to add another autoimmune disease to my list.

There are several more vaccines coming out in the near future. Johnson and Johnson is coming out with one that only needs one injection. I don't know if that is the new technology or made the way the old flu shots are made. The Astra-Seneca vaccine thru Oxford University in England is coming out with a vaccine that is also made the way the old flu vaccines are. This is a reputable outfit that has made many antibiotics and some cancer drugs that are used very often. I figure that I have tolerated the old yearly flu shots so I think I will wait for these old technology ones to come out.

I hate being cooped up so much but guess I will just have to live with it. I find that if I get out a little each day it helps to cut down on the "cooped up" feeling. I keep missing my library down the street being open. That was always a good way to get out and visit a little with people.

This is such a hard decision for everyone to make and especially those of us with autoimmune disease. It is so easy for doctors to tell us to get a vaccine cause they don't live with our disease and the thoughts that plague us. Good luck to all of you struggling with this decision. I always have to tell myself that I could be in a bad car accident or step off the curb and be hit by a bus..But....you all know what I mean. Also, I don't know how many other vaccines are in the pipe lines by other companies. Seems like there were quite a few at first but may be that some of them did not make it through testing. take care., meirish

6

Living With Sjogren's / Re: The COVID vaccine

« Last post by jazzlover on January 18, 2021, 06:52:26 PM »

Nomad .. sounds extremely dangerous for you. Why not try a different vaccine from the one the Dr received.

7

Living Life In Spite of Sjogren's / Re: A Baby Boomer Life

« Last post by meirish on January 18, 2021, 12:53:17 PM »

Such good memories of your grandmother, Linda.

The one thing that is hard to explain to "children" even mine in their late 40's and 50's is that I was raised by parents who were born in 1906 and lived through the first bad flu in 1918, WWI and WWII, the drouth and dust bowl plus the depression. My parents worked so hard and bought so little but yet we had a good life.

People were all poor together back then and everyone respected the that fact. These people lived through the rationing of WWII when hardly any sugar, flour, eggs, at times hardly any meat. Just worked at a day by day existence at times and made do with very little.

I have tried to explain all this to my children and explain that my frugal ways come very naturally. When I have a nice dish, tablecloth, whatever and place importance on it I feel badly when no one thinks it is worthy. I think of how little my hubby and I had when we were married and how we struggled to put food on the table and buy baby food for our first child. The younger generations are more interested in things than we were it seems...probably because there are more things out there to purchase.  So many of us cherished so much of what we had because we had to work so darn hard to attain it.

 Sooo, when I look at the small amount of china I have and wonder where it will go I just shake myhead at what the world has come to. Im sure many of you have some stories to tell also. Thanks for putting up with this old ladies ramblings.. I hit 78 years yesterday and I and my kids are surprised I am still around to antagonize them. Have a good day. meirish

8

Living Life In Spite of Sjogren's / Re: A Baby Boomer Life

« Last post by Linda196 on January 18, 2021, 05:33:09 AM »

Sadly, we seem to live in a disposable culture. Nothing is made to last very long to start with, and no one repairs things anymore either.

I have a couple of Irish linen table cloths that were my grandmothers, and one had a tiny, very delicately and precisely darned patch on it, you have to really look to find it, but it showed how much she valued it.

I also have a few of her silver vases, apparently single flower vases were a thing in the 20's and she would set a cluster of them with one single stem from her garden in each one. as a center piece,(sometimes with her string of pearls wound around the bases when she felt "really fancy").

Luckily, my daughter says she was born in the wrong century, and values all things vintage, so they will have a good home for at least another generation!

My other grandmother, Bless her, had very few "valuables" other than the Crystal Rosary her groom gave her on her wedding day. They were bringing up 9 children during the depression, so my most valuable reminder of her is her amazing "make do" attitude, and picture of her in a plain  apron, made from a flour sack, with tiny pink embroidered flowers on the pocket, that I remember always having a cookie in it!

I had the punch bowl, too, and still do actually, used these days on very rare occasions as a loaner to wedding receptions for flower arrangements or ice bowls for chilled appetizers.

9

Living With Sjogren's / Re: The COVID vaccine

« Last post by jazzlover on January 17, 2021, 09:55:15 PM »

I read an article today about someone who HAD COVID and then got the vaccine.

They got really sick .. so I'm just here to warn everyone.

A doctor told her she should have never gotten the vaccine.

10

Living Life In Spite of Sjogren's / Re: A Baby Boomer Life

« Last post by meirish on January 17, 2021, 09:16:05 PM »

My punch bowl was about 8$ I think. I was being facetious when I said I got my moneys with out of it. I don't have many expensive things. I do have a few things from both Mother and MIL that are very nice but I doubt that my DILS will even want them. Those nice things aren't used these days and everyone has so many things that they don't need another dish, plate, bowl, etc. I feel badly that my big pressure canner will probably never be used again. I also have a rather new 4 qt pressure cooker that I loved and used a lot. Both my DILs are scared to use a pressure cooker.

The thrift shops are filling up with all the dished, linens and furniture of the retiring and elderly population. When I was in my younger days the auctions were just packed with people paying good prices for these items and now can hardly tie them away. Times do change. Take care. meirish