I don't care what "they" say ...

[LizPetillo]

https://sjogrensworld.org/index.php?topic=12998.0

Information on the anti-inflammatory diet that, according to the Sjogrens experts, we are supposed to be on in order to help with the disease. 

[navydad]

Liz,, if you do dig that hole in the back yard,, save me the dirt,, looks like thats about the only thing we can eat,, we had pizza last night,, might as well been poison,, just laid there,, was and am sick as a dog today from it,,, I do have to agree with you,, been trying to be a good boy,, but this stuff can be downright nasty,, but I have had thrush for what seems like forever,, Nystantin does nothing,, and antifungals , well I wont take them anymore, they are hard on the body,, and pretty much destroy your guts,,,
  I had MRSA and Aspergillis infections of the sinuses and was on a PICC line for both,,, it was so depressing being hooked up to a IV for two months,, making sure I hooked up the Vancomycin and the antifungal meds,, and that wasent the first time i had a PICC line,, I had MRSA wound infection last August,, back on Vanco again for a month,,,
  PPICC lines suck,,, I;ll never get another one unless they tell me your going to cork off if you dont,, then I might give it a minutes thought and again say no,, I told my wife this morning,, this is no way to live,, this was right after I blew out a mass of goo from my sinuses after being up all night coughing on that crap,, oh well,, where did I leave my Jane Fonda VCR tape,,, 

[shevonne]

Liz, I so agree with you too! There is no time line for acceptance and it's hard for people to adjust to a new way of life.  Not everyone does a great job of accepting the bad in life.  For those that can, hats off to you, but also shame on you to judge those that aren't where you're at.  Until we walk a day in the life of someone's shoes we have no right to tell them how to handle it.  Giving "FRIENDLY" and "ENCOURAGING" advice is what everyone needs. 



Can't say it any better than that.  I am proud that some of you already past the levels to acceptance; we all have to go through the paths to get there as well.  Have patience and be kind to others because its like someone said in an earlier post if you dont like what someone is saying you need to move on.  Please dont be cruel because obviously some are feeling overwhelmed and need some support that hopefully they can get from this site.  Its like I said before you all are my family away from my family.  If I dont have this site to lean on, then I really would be alone!  Thank you to the ones that want to support me as I will do the same for you!

[puccini914]

You know, as far as the outside thing... It was sooo beautiful out yesterday.  The temerpature was perfect!  It was 70 degrees outside with a light breeze.  I wasn't hot, wasn't cold.  But the sun and the glare was there.  Had I stayed outside with DH and the kids to play outside I would have been sick for weeks.  I can say this becuase last time I was outside in the sun for 20 minutes I was in a flare that lasted for months and I still haven't really recovered and I'm much weaker since and whole new batch of symptoms added to my daily life life now.  I fear the sun, I fear sick people.  I too had pizza the other night, Dominoes Brooklyn style with x-large peperoni, it's what you can get when you live in the mountains of northwest GA.  It was okay, but I've had bad tummy rumbles and frequent runs to the bathroom for the last 3 days since.  I guess it beats being blocked up, or does it?  What do you think, Navy which is worst? To be blocked or overflowing?

[puccini914]

Oh yeah, Liz, don't start digging any holes yet, it's a waste of energy.  Just wait and let someonelse deal with it later.  You too NavyDad, why would you want to get your tools all dirty?  I , like you, know I'm getting worse, pretty quickly here.  I know that the last flare hasn't really past yet or if it did it left an awful lot of damage behind.  I think that the Strep I had for so long really weakend me so much that it was the begin of a major downward spiral.  Now, am I saying this to bring everyone down?  NO, I'm saying this to let everyone know that when you start taking immunosuppressants, you really have to be extremely careful of infection.  You can't just up and take your kids to the doctor.  You should try to get someone else to do it or if you have to go, wear a mask, use all the hand sanitizer around you and take a shower when you get home and give your kids a bath too.  When you go shopping, wipe off the carts, take precautions everywhere you go.  We may complain, we may be angry, but we are really in a very bad place.  The newbies who are just poking around may not be in as bad shape may get scared, but some of this may be warnings they need to hear.  I really did this to myself.  Ididn't stay out of the sun.  I didn't protect myself well enough at the doctor's office.  I've learned my lesson the hard way and have to live with it.  I may complain, but I surely don't want to see anyone else make the same mistakes that I did, if it can be avoided.

[navydad]

You know, as far as the outside thing... It was sooo beautiful out yesterday.  The temerpature was perfect!  It was 70 degrees outside with a light breeze.  I wasn't hot, wasn't cold.  But the sun and the glare was there.  Had I stayed outside with DH and the kids to play outside I would have been sick for weeks.  I can say this becuase last time I was outside in the sun for 20 minutes I was in a flare that lasted for months and I still haven't really recovered and I'm much weaker since and whole new batch of symptoms added to my daily life life now.  I fear the sun, I fear sick people.  I too had pizza the other night, Dominoes Brooklyn style with x-large peperoni, it's what you can get when you live in the mountains of northwest GA.  It was okay, but I've had bad tummy rumbles and frequent runs to the bathroom for the last 3 days since.  I guess it beats being blocked up, or does it?  What do you think, Navy which is worst? To be blocked or overflowing?

I dont know,, I really dont know which is worse,, I wish just for one week my guts would settle and I could have regular movements,, if I dont take miralax daily,, I get completely blocked,, and when I do take it,, it just,, well cow paddies come to mind,, no inbetween,, and ya I know meds can do a lot of this,, but not like this,, it comes and goes,, but lately has become permanent, they make noise all the way down,, on the sides they make noise,, and I can look at my guts and it looks like that scene from alien,, where her guts just move around,,

[navydad]

Oh yeah, Liz, don't start digging any holes yet, it's a waste of energy.  Just wait and let someonelse deal with it later.  You too NavyDad, why would you want to get your tools all dirty?  I , like you, know I'm getting worse, pretty quickly here.  I know that the last flare hasn't really past yet or if it did it left an awful lot of damage behind.  I think that the Strep I had for so long really weakend me so much that it was the begin of a major downward spiral.  Now, am I saying this to bring everyone down?  NO, I'm saying this to let everyone know that when you start taking immunosuppressants, you really have to be extremely careful of infection.  You can't just up and take your kids to the doctor.  You should try to get someone else to do it or if you have to go, wear a mask, use all the hand sanitizer around you and take a shower when you get home and give your kids a bath too.  When you go shopping, wipe off the carts, take precautions everywhere you go.  We may complain, we may be angry, but we are really in a very bad place.  The newbies who are just poking around may not be in as bad shape may get scared, but some of this may be warnings they need to hear.  I really did this to myself.  Ididn't stay out of the sun.  I didn't protect myself well enough at the doctor's office.  I've learned my lesson the hard way and have to live with it.  I may complain, but I surely don't want to see anyone else make the same mistakes that I did, if it can be avoided.

I dont go anywhere,, so I have no idea how I get these dam sinus infections,, I;m serious, its not like I go hang out at a runny nose day care center

[inga]

First of all, I have never judged any one.  I have no reason to.

Liz, I think your very strong faith is very shaken, and that makes what you are going thru even more difficult.  Your friends and social life was based on a faith that you perhaps gave you the impression if you were faithful enough, believed enough, all would be fine.  You would live an abundant life.  Instead you got a disease that no one understands, and your suffering is great.  Your faith is shaken and your social group is fractured.  It is an emotional earthquake.

I grew up Catholic, now drifted but not lost by any means.  Fortunately, I grew up with a lot of pain and loss in my life, so, it isn't surprising to me.  The story of Job always comes to mind when I look at my life.  But that is a parable, on how we need to maintain our faith no matter what befalls us.....and it does befall us!  No one would look at my life and say, "Wow, I want HER life!"  It has been so tragic at times, I don't talk about it, since, I would sound like a pathological liar.  God had nothing to do with it.


Perhaps your friends are trying to help you, to assist you thru this the best they can and maybe they are inept.  Maybe it is possible that they just want you to find a way thru the darkness, because they can not bear to see you suffer.  Even Mother Theresa spoke of this darkness, when one loses their faith, and she did, and she got thru it and found her faith again in a more meaningful way.  Maybe you have outgrown your friends, and this experience you are going thru is, a growing experience, albeit, horribly painful.  We are all developmentally different on an emotional scale.  Lesley is correct, that you are in a dark place, but you will not stay there.

God did not give this to any of us.  God does not pick and choose, on some basis, who has a great abundant life and who has misery.  We can not comprehend the nature of God it is so great.  All I know, is God or the Force, is in everything, from the fly on my computer screen to me, and you. In all of us is the pure love and light of a force that holds the mystery of life in it, and we are part of it, even if we are unaware of it or don't want it.  I do think there are evil forces in this life too, and that force would like nothing more than to take us from the light, to divide and conquer.  It would like nothing more than to have us dwell in great misery and chaos.

You are a bright young woman, who will figure out how to get thru this.  Children deal with cancer, young mothers with leukemia.  We lose people we love.  Homes burn down.  Pets die.  Birth, joy, death, tragedy.  Spring, Summer, Fall, Winter.   Life rolls on....children grow up and away.  Our young children are suddenly strong adults concerned about us, and how we will  manage in our old age.  And we say, "Old?  What do you mean old?'  Were we not the warriors?  Now we send our children off to fight?  

You have to grieve  for the life you would have had if you had not gotten this disease and accept the challenge of living the life you have now, with this disease.  When you get thru that process, things will look less bleak, and you will feel greater strength, and know the God that dwells within your body and soul, that is suffering right now. God is not somewhere outside of you, unaware and uncaring about what you are experiencing or worse yet inflicting it on you to see if you meet his or any one else's expectations of grace.  God is in you.  And when you suffer, all those who love you and are in touch with this light, feel your pain.  
Those of any faith or religion can be in touch with this loving light.  So this is in no way meant to prefer any one religion over another.  It isn't about religion at all.

It is difficult to speak of this without  treading on the ground of religion or faith, but there is a Bible quote, To every thing there is a season....we can keep it secular and think of the song by the Birds....Turn, Turn, Turn.

Grieve, it is your seaon to grieve....and then, turn.....and do great things.  Time waits for no one.

[navydad]

Inga,, Liz may be pi&&ed at God,, I dont know about the rest of the crowd,, but i was too,, it doesnt matter now,, my prayers werent answered,, and I dont believe that I have this for some special purpose in life,, if that were the case I;d run away and join the circus to be in the freak show,, but your right,, children die,, mothers get leukemia,, but we never heard of all this stuff in the not so distant past,, I think its all man made,, we screwed up the plaent so bad,, ate lousy food,, but we did raise our life expentcency to about 80 years now, (better living through chemistry)
  Steven Hawkins came out with a new book about the cosmos,, and in it he saiys that there was no need for a God to start the universe,, gravity and physics along with science explains everything,, but look at him, crippled up in a wheelchair,, and one of the most brillian minds on the planet,,,

And on a final note,, anyone plan to burn a Koran this Friday,,, according to the pastor down south whos name excapes me,, says that Islam is the religion of the devil,, and refuses to take any blame if any harm comes to any troops who are serving,, if this God fearing man goes along with his idiotic plan,,,

And Jobs friends were the real problem,, along with his family,,, curse God,,, but he never did and he was rewarded,,, but not after lsing most of his family,,,his livestock and whatever else he had,,, and that was the only time that the (devil),, got to play games with God,, hes not well known to play board games either

[bloodless]

I've been lucky enough to not have my faith shaken through this. Noone tried to tell me how to handle it from church. I was even luck enough to have a pastor who had to undergo all the tests for sjogrens when he had lung issues, so he was well versed on the disease. My heart goes out to those of you who weren't so lucky. Love and prayers.

[inga]

I had zero help from any established churches, but, honestly, was never angry with God.  I guess I don't look at God as causing disease, I look at genes, neurotoxins, infectious agents etc....bad luck, lol.

Even when you make peace with being sick, you still go thru crisis after crisis that you have to deal with.  That is life I guess.  Some people manage to escape it.

[navydad]

I had zero help from any established churches, but, honestly, was never angry with God.  I guess I don't look at God as causing disease, I look at genes, neurotoxins, infectious agents etc....bad luck, lol.

Even when you make peace with being sick, you still go thru crisis after crisis that you have to deal with.  That is life I guess.  Some people manage to escape it.

Inga I know a lot of prople that have had a crisis hit them over the head over and over and they just act like it never happened,, they just pawn there crisis on someone else and dont deal with it,,,

[LizPetillo]

God did not give this to any of us.

God runs everything.  He could have NOT let people get these things. Therefore, he is guilty of 'sin of ommission'.  Being Catholic you'll recognize the term.  Guilty not because of what He did ... but instead guilty because of what He didn't do ... stop people from having to suffer.  Heck .. He set the whole system up to begin with ...

[LizPetillo]

Oh yeah, Liz, don't start digging any holes yet, it's a waste of energy.

No problem there.  I'm being cremated and I told my husband to scatter my ashes up in the mountains of New Hampshire.  So, no ditch digging for me.  Oh .. and he said he'd have me cremated TWICE because he knows how much I hate this body!  (he was kidding of course).  What a guy!!  I told him I'd stand by the crematorium (as a ghost) and laugh and laugh as my body was destroyed.  It's my ultimate revenge upon it for what it's doing.  

[LizPetillo]

Nystantin does nothing,, and antifungals , well I wont take them anymore, they are hard on the body,, and pretty much destroy your guts,,,

The antifungals that are delivered by pill won't work with sjogrens patients.  They are delivered through the saliva glands and ... OURS DON"T WORK!!  And yet, every idiot doctor this summer gave them to me to take when they misdiagnosed me with thrush.  I swear, our medicine in this country isn't much improved since the dark ages.  Next they'll be giving me leeches!