Author Topic: Is there hope?  (Read 14335 times)

Sha

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Re: Is there hope?
« Reply #45 on: February 09, 2011, 08:45:41 AM »
Joe~I try to put up a pic, but no matter what, IT SQUISHES ME and makes me look like a troll with no neck!!LOl The pic doesn't start out that way!

one and only's pic didn't start out that way either...i could even see his face when it was in the normal form....not squished!

How can I  make it NOT SQUISH ME?

sha who HOPES  not to be squished in a picture, hurts my joints and neck....reminds me of one of the kids I worked with that had a kids screaming across the room saying "HE'S SQUISHING ME!" The teacher had no clue what was happening,  but, I looked at the kid i worked with and said "Are you squishing him with your fingers?" You know when ya hold  your thumb up and index finger, look through them, and close your fingers in a pinching motion....like you are squishing the person's head!!?? LOL the other kid should have had a 1-1 para also, but i still remember the teacher's face....she was shocked that was what it was over....it had been going on for an hour (i was only with the squisher for 4 hours out of the day, and this happened before i got there). Sorry for the long story, though it would make ya laugh!!

Joe S.

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Re: Is there hope?
« Reply #46 on: February 09, 2011, 11:36:17 AM »
The image of Jan and I is also squished a bit. Thy to use a square pic with a JPG format.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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One and only

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Re: Is there hope?
« Reply #47 on: February 09, 2011, 03:14:36 PM »
Thanks One and Only. Looks like a nice yard in the pic. I can not make out anything else.
supposed to be me in my Steeler Stuff,, but its not good,, maybe change the format,, it is a big yard,, to much for me to mow anymore, and I used to love to get up on saturday mornings, spend the whole day out there and make it look like a golf course,, now I dont even care,,

Joe S.

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Re: Is there hope?
« Reply #48 on: February 09, 2011, 03:31:15 PM »
Sha, looks much better.

One and Only, I know what you mean. We moved to a house with a postage stamp yard and it is still too much to mow.

To get this back on track, Dr. Who says, "Where there is life and breath, there is hope". I like that concept because the other is not an option.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

One and only

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Re: Is there hope?
« Reply #49 on: February 10, 2011, 06:51:37 AM »
Sha, looks much better.

One and Only, I know what you mean. We moved to a house with a postage stamp yard and it is still too much to mow.

To get this back on track, Dr. Who says, "Where there is life and breath, there is hope". I like that concept because the other is not an option.
Sometimes the other option seems like a release from everything Joe, life and breath almost mean nothing when thats all your doing, becasue your body wont let you do anything else,

flutterfly

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Re: Is there hope?
« Reply #50 on: February 10, 2011, 08:12:48 AM »
yups ta the max on that 1!!!   :D


Joe S.

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Re: Is there hope?
« Reply #51 on: February 10, 2011, 10:57:44 AM »
I know what you mean,, one and only. I try to keep positive attitude and out look. Some days it is difficult to get into a positive frame of mind.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

balor123

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Re: Is there hope?
« Reply #52 on: February 18, 2011, 04:18:19 PM »
I have finally found evidence that there is hope! Check out the patent Prevention of primary sjogren' s Syndrome by ICA69 deficiency.

Meld256

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Re: Is there hope?
« Reply #53 on: February 18, 2011, 07:50:50 PM »
balor,

Thanks for posting the link. I read the majority of the article; very interesting.  I wonder what's happened with that information since 2008? (more research...)

I believe this shows there are studies being done, and yes, there is hope.  There is always hope!  :)

balor123

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Re: Is there hope?
« Reply #54 on: February 18, 2011, 08:25:55 PM »
A little more searching and I found this post. Looks like there was lack of funding. Well, back to no hope :P

Meld256

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Re: Is there hope?
« Reply #55 on: February 20, 2011, 09:59:58 AM »
balor,

Well, I read the entire earlier post from 2008. Rather frustrating...but thanks for passing it along anyway! I get the feeling this type of thing has happened more than this one time.

There still is always hope! Hope of more research, hope for a cause, hope of better quality of life for all of us.

Personally, (and again, everyone is different) I try to work on what a wise person here stated (I think it was Irish) that we need to "accept, adapt and persevere".  Those three small words encompass a huge amount of emotional work for me!

Accept: That's a big one! To accept that I have this annoying, frustrating condition that I may always have. That I am not the same person I was...my entire life has changed. To grieve over the person and I used to be and learn to like the new one. I've worked on this about 18 months and still may have a bit of work to do. It takes time...

Adapt: Also, a huge feat. Adapting to my limitations has been difficult, but not impossible.  I look at everything differently because I have no other choice. But I am learning to adapt in ways that I am proud of.  Adapting does not mean giving up; adapting means learning to live a happy and productive life in spite of the issues. To know that I'm still the same person really, I'm just a different version of that person and it's ok.

Persevere: Sometimes that means as we say here, to just "keep on keeping on". Days that we feel depressed and/or angry, we just keep going. We find intestinal fortitude to go on for today; we vent here on the forum, we reach out if needed or hide ourselves away for a day. For you, it may mean keep on looking for more research and to never stop. We are all different, and yet we deal with many of the same problems.
I've really rambled on...sorry. I pray that you are still able to see hope for the future. Keep posting and we will all be here if you need us! ;)
Melinda

balor123

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Re: Is there hope?
« Reply #56 on: February 20, 2011, 10:34:12 PM »
I was looking at the TOC for Gene Therapy for Autoimmune and Inflammatory Diseases. Apparently Sjogren's is a target for gene therapy. There is a section of this book dedicated to it.
« Last Edit: February 21, 2011, 10:27:16 AM by Linda196 »

LizPetillo

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Re: Is there hope?
« Reply #57 on: February 21, 2011, 03:46:55 AM »
Liz, I don't think I've ever disagreed with anyone as much as I do with you and your post here.  If I was brand new, I would cringe and probably go tuck the covers over my head and never come out.
I posted reality. 
There is no hope for a cure anytime in the near future.
The disease is progressive.  It only gets worse.
For many of us - Life with the disease SUCKS.  And it's scary.
Those are the facts. You are, of course, free to disagree with facts if you wish.
its sad when you begin to thnk death is the only way out,
I look forward to the sweet release of death. 
Quote
  you;ll see where me flutter and Liz are coming from
Thank you.
I got enough so called 'friends' here (outside the internet) not understanding and/or disagreeing with how I 'handle myself' or not liking the fact that I don't play Pollyanna but instead deal with reality ...


Linda196

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Re: Is there hope?
« Reply #58 on: February 21, 2011, 10:39:36 AM »
Just as a point of interest, and possibly a reality check for newbies.....not every one is as severely affected, and there are occasions of improvement for some people.

In 2003, I was bedridden, with severe cardiac arrhythmia, no use of my right arm and leg, recurrent deep lesions of the mouth, pharynx and esophagus, advancing renal failure, corneal abrasions, and pain I won't even begin to try to describe. While in ICU, I received the sacrament of the sick not once but 3 times. I was advised "to put my affairs in order" by more than one doctor.

Slowly, with high doses of Prednisone, Imuran, Methotrexate and Plaquenil, in various combinations; physiotherapy; occupational therapy;  and a drastic change in lifestyle; I was able to reclaim a lot of my life.....not the professional, contributing to society, productive parts, but I'm able to look after myself, my husband and our home (with his help) and I've learned manage or tolerate, although not control, any pain.

My most heartfelt wish is that anyone facing these dire circumstances could have the same supportive, caring, and knowledgable people around them that I had and continue to have.
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

seren

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Re: Is there hope?
« Reply #59 on: February 21, 2011, 12:03:54 PM »

Absolutely WELL SAID Linda.  Sounds like you have been through heck and I am so glad you are able to enjoy your life again to some extent! :)  I think the moral here (in my opinion) is that it depends on your point of reference.  Don't get me wrong living with constant pain etc can seriously grind you down and then some.  However, I am of the opinion that there is always someone worse off and when you think it cant get any worse....it seriously CAN.

Therefore,  we just have to try and find some joy from somewhere and literally count our blessings!!!!  :)