Sjogren's Syndrome - SjS

[sheila022]

just wow........Mrs. B, I did def learn about this condition, and it does sounds really painful.

How do you get it? Genetic factors? Etc?

 

[mshel]

Yes, I have that..I have terribly horribly super dry mouth and eyes. and other areas are affected, but with all things each person experiences it differently..I hope you are able to find something that helps for you.

 

[Frisky Feline]

I learned new something about it. I hope there is something that soothe for you and everyone who have same ones because they deserve good lives out there.

I learn new something everyday and try to learn how to cope or find something to soothe so share with others too.

 

[Sosie]

I am sorry to hear that, Mrs. Bucket. It's a terrible disease. I know a friend of a friend who also has Sjogren's Syndrome. No fun!
Here is a from me.

 

[Mrs Bucket]

Wow..I learned something new today. I am at loss for words but here is a

There is so many people I know who are going through so much with their health so I just pray for a happy and healthy 2011 for all of you.

I pray for everyone's good health as well. I believe health is wealth. Thank you for that.

OHH Mrs B, that what ya have to deal with?? wow I really think ya will do it well enough and also your hubby must be really a wonderful person to assist with your daily pill work and others.. bless him...

Yes Roman, I am blessed with Chris because I've been able to deal with it over two years and it is always the winters that just beats me down. Thank you for your kind words.

just wow........Mrs. B, I did def learn about this condition, and it does sounds really painful.

How do you get it? Genetic factors? Etc?

If it sounds painful to you just by reading it, imagine living it. It is something I could never wish upon an enemy. There are days I break down crying & sleeping the pain away. I wake up and tell myself to look at the better side of life. I got the SjS because of the RA and OA, both my parents have RA and OA respectively. When I had both RA and OA it made my already weakened immune system susceptible to SjS.

Yes, I have that..I have terribly horribly super dry mouth and eyes. and other areas are affected, but with all things each person experiences it differently..I hope you are able to find something that helps for you.

mshel, how do you deal with the side effects? I usually drink carbonated water to help with the dryness of the throat. I also use a heavy lubricant eye drops for the eyes. As we mentioned, SjS affects people individually.

I learned new something about it. I hope there is something that soothe for you and everyone who have same ones because they deserve good lives out there.

I learn new something everyday and try to learn how to cope or find something to soothe so share with others too.

Oh wow, you just made me tear up here. Thanks MJ.

I am sorry to hear that, Mrs. Bucket. It's a terrible disease. I know a friend of a friend who also has Sjogren's Syndrome. No fun!
Here is a from me.

Thanks Sosie.

 

[Sharky99]

Ya are indeed welcome, Patty... I'm sure ya can solder on with that and look forward to life in a positive way... hugs to ya and do take care..

 

[Oceanbreeze]

MB,

You used a multiple quote above, so, I'm not going to re-quote you. However, you were talking about Sjogern's being a disease that can attack after other diseases are already present. That's true. I do NOT have Sjogern's, but my rheumotologist told me that I could be susceptible to auto-immune diseases somewhere down the line, but, didn't elaborate on which ones. (I also became fearful and didn't ASK; ignorance is sometimes bliss?)

But, seeing as I have fibromyalgia AND OA, it's possible that another disease may try to come in and attack my immune system somewhere down the line.

Incidently, I'm alot like you. I don't live in fear of this. I just do what I can to keep myself as healthy as possible. I try to get enough rest. I've also altered my diet and I've tried to reduce my stress level. All these things can go a long way to helping one cope.

I've also taken care of myself emotionally and mentally as well. I've sought counseling in the past, which has given me the tools I need to stay as healthy as possible. Another thing that has helped me over the years since my diagnoses, has been my pets. We lost one of our pets in June. Since then, we've aquired two puppies. That's the younger one in my display pic. She was 2 mos old there. (shameless plug over ).


Hang in there, girlfriend! You're doing what a lot of people could NOT do. I admire you for that.

 

[Mrs Bucket]

OB for saying exactly what I needed to hear.

You and I are alike. I don't live in fear of this and dislike it when people walk around on eggshells when they are around me. Some people will treat me as if I am a precious piece of glass and I will tell them outright not to do it again. It's a terribly uncomfortable feeling for both the person and for me as well.

Naturally my walking will become slower and the gait will become pronounced. I take care of that myself by bringing the resources to alleviate the pain ie. having a backpack for water bottles and using a walker helps.

I go shopping when the mall hours aren't the most busiest. We prefer to cook at home so I can limit the sodium intake as well as enjoy what we eat.

The best secret I can tell anyone in this same situation that is married as well. Always keep the romance in the relationship. Communicate everything out with your partner and you both will be very happy in the bedroom too as well.

You brought up a vital point- pet companionship. All our furkids are beautiful communicators and confidantes. They cuddle a lot and know when I feel down-right lousy, they will cuddle with me. All three of them; it's the best feeling in the world!!

 

[Miss-Delectable]

Mrs Bucket,
Thanks for being open about this and for educating us on this terrible condition.
I admire you for doing your best to look on the positive side of life and enjoy it while it lasts. You're blessed to have a nice man like your husband on hand to help you though this.
Cheers

 

[Oceanbreeze]

OB for saying exactly what I needed to hear.

You and I are alike. I don't live in fear of this and dislike it when people walk around on eggshells when they are around me. Some people will treat me as if I am a precious piece of glass and I will tell them outright not to do it again. It's a terribly uncomfortable feeling for both the person and for me as well.

Naturally my walking will become slower and the gait will become pronounced. I take care of that myself by bringing the resources to alleviate the pain ie. having a backpack for water bottles and using a walker helps.

I go shopping when the mall hours aren't the most busiest. We prefer to cook at home so I can limit the sodium intake as well as enjoy what we eat.

The best secret I can tell anyone in this same situation that is married as well. Always keep the romance in the relationship. Communicate everything out with your partner and you both will be very happy in the bedroom too as well.

You brought up a vital point- pet companionship. All our furkids are beautiful communicators and confidantes. They cuddle a lot and know when I feel down-right lousy, they will cuddle with me. All three of them; it's the best feeling in the world!!

I often wake up feeling stiff and sore in most of my joints. Fatigue also figures into this. Fibromyalgia is a disease that relapses and remits; meaning that there are times when I feel relatively fine. The pain levels go way down and I function somewhat normally.

So, for me, minimizing triggers is important. This could be anything from stress, physical illness (If I have the flu, the joint pain ends up increasing 10-fold), and, changes in the weather. By that, I mean a drop in temperature, barometer, or, just about anything. My body is also VERY temperature sensitive to the cold. When cold, my muscles stiffen, which makes me hurt even more (think of being already stiff, and having an external source stiffen an already stiff body....It's not fun).

It's one of the reasons I moved to FL 13 yrs ago. I was pre-diagnosis at the time, but by default, I made things a little better by moving. My body still reacted to the higher humidity causing pain, but, the barometric issues lessened as the barometer remains relatively constant here (except when there's an approaching tropical storm or one within 500mi from here). Tropical weather causes the barometer to drop rapidly and that brings on an onslaught of significant pain for me.

This is a long winded way of saying that I practice a LOT of good self care. I educated myself about my illnesses, made necessary changes, and am coping reasonably well. I still have days where getting out of bed is the LAST thing I want to do, but, I do it. I also have two very sweet kids that I watch in the afternoon--my niece and nephew. Along with the furkids, I have the human ones that always bring a smile to my face. In coping with all this adversity (and even more that's not relevent to this thread), I've learned to look to things that make me happy and bring me joy.

It helps.

 

[Mrs Bucket]

Mrs Bucket,
Thanks for being open about this and for educating us on this terrible condition.
I admire you for doing your best to look on the positive side of life and enjoy it while it lasts. You're blessed to have a nice man like your husband on hand to help you though this.
Cheers

I am blessed to have Chris and good friends/family that knows to treat me the same before I was diagnosed with SjS.

I live each day to the fullest as if it was my last day. I won't grieve for what will eventually happen because that's time well wasted. Hubby and I enjoy life and we will continue to do so. to you.

 

[Mrs Bucket]

I often wake up feeling stiff and sore in most of my joints. Fatigue also figures into this. Fibromyalgia is a disease that relapses and remits; meaning that there are times when I feel relatively fine. The pain levels go way down and I function somewhat normally.

So, for me, minimizing triggers is important. This could be anything from stress, physical illness (If I have the flu, the joint pain ends up increasing 10-fold), and, changes in the weather. By that, I mean a drop in temperature, barometer, or, just about anything. My body is also VERY temperature sensitive to the cold. When cold, my muscles stiffen, which makes me hurt even more (think of being already stiff, and having an external source stiffen an already stiff body....It's not fun).

It's one of the reasons I moved to FL 13 yrs ago. I was pre-diagnosis at the time, but by default, I made things a little better by moving. My body still reacted to the higher humidity causing pain, but, the barometric issues lessened as the barometer remains relatively constant here (except when there's an approaching tropical storm or one within 500mi from here). Tropical weather causes the barometer to drop rapidly and that brings on an onslaught of significant pain for me.

This is a long winded way of saying that I practice a LOT of good self care. I educated myself about my illnesses, made necessary changes, and am coping reasonably well. I still have days where getting out of bed is the LAST thing I want to do, but, I do it. I also have two very sweet kids that I watch in the afternoon--my niece and nephew. Along with the furkids, I have the human ones that always bring a smile to my face. In coping with all this adversity (and even more that's not relevent to this thread), I've learned to look to things that make me happy and bring me joy.

It helps.

Taking responsibility ie making a move to the warmer climate does help. My uncle suffered chronic SAD to the point he couldn't function in a daily social setting. He moved from Boston, MA to Melbourne, FL and since then he's prospered a lot there. He has life in him & he looks so much better.

This is something that I have at the back of my mind, when things gets so tough and I'm constantly bed-ridden, we'll need to discuss relocation.

 

[Mrs Bucket]

Bundle up everyone as it is going to be witchin' cold tonight. I've been blessed with three furbabies that understands when I must have them sleeping on top of me.

I just took the picture using the Mac and forgive me for looking terrible. It's the SjS, I'm off to have a nap after this post.

 

[Smithtr]

aww that is cutes! I notice your really seems soft great impressive!
smile and happy! you are happy! how was your day feeling well? Hope be you suffer! hope pretty sound help you! I remember your friends hugs! sad SJS is very suffer!

 

[Mrs Bucket]

aww that is cutes! I notice your really seems soft great impressive!
smile and happy! you are happy! how was your day feeling well? Hope be you suffer! hope pretty sound help you! I remember your friends hugs! sad SJS is very suffer!

Hi Travis, thank you so much for the very sweet words of encouragement. Yes, we'll always be friends and yes, SjS is a sad disease but I always look for things that makes me smile. Lil'Bit makes me smile because he loves to snuggle with me.

I have wonderful friends here and IRL that supports me. They are amazing people and I love them very much.

Thank you Travis. May God bless you.

 

[Smithtr]

Hi Travis, thank you so much for the very sweet words of encouragement. Yes, we'll always be friends and yes, SjS is a sad disease but I always look for things that makes me smile. Lil'Bit makes me smile because he loves to snuggle with me.

I have wonderful friends here and IRL that supports me. They are amazing people and I love them very much.

Thank you Travis. May God bless you.

I am glad of you appreicate to you hugs I am support to you! I ma very happy! I pray for you! I am remind your friends! you are good person! I ma very glad of hear you! I am friendly and kindly strong positive and support more worth communication to you It is very better you soon! you still have suffer! I miss you
hugs +2 I am very sad for your disease! I pray for you continue remind your friends forever friendship

 

[Sharky99]

Aww cute pic, Mrs B... your hubby must be hamming it up good for the cam eh.. lol..

I'm sure ya will find something that will benefit ya well enough healthwise and your hubby and the furkids will help well enough...

 

[Mrs Bucket]

Today I woke up with a terribly sore body and a throbbing headache. I just knew what triggered the pain, it was my fault. I allowed myself to be stressed out.

Thank you to you-know-who for PMing me your concern and noticing the difference in me. I am taking time off from the board to focus on my health.

 

[rockin'robin]

One of my sisters in N.C. emailed me the other day...saying that one of my sisters in California has SJS...and is very ill....said she will have a bone marrow done in January to find the best treatment...and her kidneys are failing.....in and out of the hospital.

This disease is really invasive...and the first I've heard of it. No cure.....

Will be thinking of you, Ms Bucket! along with my sis, Barbara....both of you hang in there and beat this disease!....

 

[posts from hell]

Today I woke up with a terribly sore body and a throbbing headache. I just knew what triggered the pain, it was my fault. I allowed myself to be stressed out.

Thank you to you-know-who for PMing me your concern and noticing the difference in me. I am taking time off from the board to focus on my health.

Hope to see you soon.