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

[sugarbugar]

Uh, how to do this without getting blasted.  There probably is not a way, but I cannot stand this anymore.

I think that everybody handles their illness in different ways.  True?

Everybody does not have the same issues.  True?

Some people really are much better off than others.  True?

I rather thought this board was to help and let people ask questions and was to be a SAFE place to vent because it was understood that others without the disease surely wouldn't understand.  A place where you wouldn't have to explain your whole life because the very people you think are there to let you vent are going to turn on you.

Who is to say how sick another person is?  And who is to say how they should act?

Is there no compassion?  Why the insensitivity?

If you have to go through different levels to get to acceptance, is there a time line?

How many people have been driven from this board because they don't meet the standards set by others?    

Isn't this the place you should be able to let it all out?

I'm just having such trouble because I see people being told they need to do this, that or whatever.  It is a bad as seeing a doctor who does not listen to you and basically tells you to suck it up.

So if it isn't a safe place, then let it be known on the site that you can only complain x amount of time, but please, don't hurt others.

I assume I will not be welcome here anymore, but I am hoping that maybe this might open some eyes to what is happening and maybe stop some of the pain being inflicted.

I rather think if you don't have anything nice to say, don't say anything!

Lizzy

Liz,
I so agree with you! 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. 

[shevonne]

Ditto!!!

[LizPetillo]

@Navydad ... I was Army.  My husband was Airforce.  My dad was Army (Korea).  My fatherinlaw was Army.  My brother is retiring from 22 years in the AirForce in November.   (His wife has leukemia .. I'm wondering about how they'll get medical care).  Anyways ... Here's to the US Armed Forces!! Hip hip hooooooraaaaah!

[inga]

Yes, both parents are deploying to Afghanistan.  This is my daughters second deployment to Afghanistan.  They are engaged but not married,  maybe that is why, but I dont think so.  They expect them to have plans to care for their children.  She is in a 'safer' job, but, nothing is safe over there.  Three years of my recent life have been spent in concern over my kids.  I pray that neither of them is hurt or killed.  He is a door gunner on a helipcopter.

My son was wounded pretty badly in Iraq.  He was a forward observer, which is a dangerous job.  He is moderately deaf, has constant tinnitus, severe migraines, has trouble with balance, with reaching things without missing them.  Back pain, neck pain, and PTSD.  Something is wrong with his vision, which was very good, but now, after constantly looking through scopes or something, he doesn't see as well.  He not only had a bomb go off on his humvee, he was almost killed by artillery when he was in front of the lines and the unit he was with from another state, didnt callibrate their guns properly, and he was in a lot of gun battles, one in which a child he knew was killed....and died in his arms. He hates fireworks, thunderstorms, and anything sudden.  He has security systems on everything, and a gun safe that weighs tons and is full.....but he is a gentle man, a good man, who defends those who need defending.  Honestly, I have never known any one with more honor, him and my father in law.  My son wore his grandpa's dog tags and Celtic cross taped to his won tags over there...... He will never be the same man, but he is a wonderful son, husband and father. 

The hardest thing I ever did was send my babies off to war.

We skipped a generation, since neither myself nor my husband served in Vietnam....but my father in law was wounded in both Saipan and Tinean.  He was shot in the ankle and sent BACK and then wounded very seriously in Tinean, and 30 years later, he would still have shrapnel come to the surface.

My grandfathers on both sides fought WWI.

My ancestors fought in the Civil War, on both sides.  Brother against brother.....

And 5 of my great, great, great, great, great, great grandfathers fought at Cowpens and a few other battles in the Revolution.  A few greats before that in Indian Wars.  One branch has been here since 1635.

But, I don't consider us a milititary family.

Life has always been uncertain.  Nothing is ever guaranteed. 

[inga]

BTW, my husband who is 60 and still working, with an hour and a half commute, gets UP with the baby at NITE, since at night, I can't walk very well.  I can't feel my legs below the knee and I am very unstable, and dizzy if I get up from sleep.  So, the baby still takes a nite time bottle and he gets up with him.  Also, this daughter is one of my adopted kids who spend years in foster care before we took her at age 9.  She is too young to be a mother AND a soldier.  All my children work, and no one really can fit another child in with childcare costs.  I am home, and fairly able for the daytime, so, I guess it is my duty, to do my part.  At least I don't have to carry the gun.  Again, we are not a military family, and if we had our druthers, no one would be going off to war right now.  But, country calls, and our people have responded....hubby and me included, even tho its hard.

I am in the end stages of being functional.  I can't blame it on Sjogren's since I don't have SSA or SSB.  I do have neuropathy.

This time, now, is the last time my grandchildren will remember Nana as a 'fun' person....This is when I can pack in as much love and memories into their lives, as much joy, as is humanly possible.   I don't know if this will stabilize and I can have another decade of being able to walk, maybe two, if I am very lucky.  I am packing in what ever I can right now, even if it hurts, since, who knows what is to come?

I believe this hit me when I was in my late 30's or early 40's.  So it has been a long time of fighting this disease....whatever it is.

[Suzie]

Inga, I am clapping and cheering for you. You're a true inspiration. I hope that when my time comes to be a grandma, I can be a fraction of the loving, selfless, generous and unstintingly loyal matriach that you truly are.

You may not consider yourselves to be a military family, but I salute you.

Suzie

[inga]

Suzie, you will do great!  We ALL will rise to meet the challenges in life. 

[harrigan]

Inga, I know you say you are doing what you have to do, but your positivity and devotion are inspirational.  There will be no doubt that your grandchildren will have wonderful memories of their grandparents.  I'm proud to 'know' you.  What a fascinating background to your family.  XX Ailsa

[inga]

Thank you, so much.  Frankly, hubby and I just see the job and do it....it has been that way our entire lives.  I do so hope that I can maintain it thru all the trials that lie ahead in the coming years.  It won't be easy.

[denisezesh]

sjogrens is different for everyone...If I were new I,d think,,,theres no hope...My Mother had it about 40 years,,,,Her eyes were always infected....glands always swollen...& no one then knew what it was...I had A doctor test her for it 10 years before she died of alzheimers..There is so much more info now...Thank God for  this site...It,s unbelievable...To anyone new....sjogrens is different for everyone,,,,So don,t be frightened....God Bless Everyone'''

[eyeamdry]

Inga and everyone, people usually can rise to the occasion.  My best friend's daughter died last year at the age of 37 with pancreatic cancer.  She left two children 12 & 19.  Their father is deceased.   My friend's husband had one leg amputated a couple of years ago.  Although the 19 year old is "raised", she is just starting college and the 12 year old boy will be in the care of my friend, their grandmother.  There was no one else to do it and she wouldn't have it any other way.  It's amazing what people do and try to do, that they never dreamed of.  Bless all who go the extra mile and take care of loved ones who need the help.  Lucy

[inga]

I think I sometimes give people the impression that I am just a peppy le peu.....I am not.  I have days when I am FLAT OUT IN BED.  I use trekking poles to walk, and soon I will need a walker, especially at night.  I expect to land in a wheelchair.  I am having surgery on my hands which are useless now, and I am very afraid of ending up with RSD.

I am in a LOT of pain.  I have some freaking movement disorder and drug clearance issue that makes it extremely hard to take meds.   I have dry eyes, dry mouth, all my teeth are crowns, and my joints are painful and some mishapen enough to be useless....hence the surgery.

Yes, every one is in various stages, and I am not unsympathetic to any one in ANY stage.  I am not insensitive, and I hope for most of you that you don't end up like this.  I am on IVIG, so you can guess they don't give that out to minor cases.

My advice is that, whatever stage you are in, YES, it is likely to progress....and if you can't handle it now, how will you be in 10 years?  Many days I wonder that myself.   How will I be in 10 years?  My disease, is chronic, prgogresive and disabling.

No, many of us are not taken seriously by doctors, who regard these undifferentiated conditions as 'fibro'.  I am one of the 'lucky ones' in that my neuropathy has been so disabling, I got relatively decent care.

I don't know what did this to me.  Why me?  Why not me?  With 6.8 billion on the planet, I guess, I got this...I truly do feel for any one, and I mean any one, any where who gets this.  But right now, there isn't much medical science can do for it.....so, I just keep plowing on, and no, I am not in denial.  All by belongings have been divied up to my kids...my hubby knows what to do in case I decline or in case of my demise.  It happens to people every day. 

I guess being a hospice nurse made me feel not so special.  Many of those people showed ME how to be chronically ill and how to die with dignity, and I pray I can do it as well as they did. It also taught me to make the most of what time I have on this planet.  BTW, I whine as well, as loud and as creatively as any one with this disease.

[LizPetillo]

I've never said 'why me'.  But I do say 'why do you (god) do this to people .. to anyone'. 
Of course, He never answers me.  But I do ask that. 

A while back I was falsely accused by my FORMER best friend of thinking 'why me'.  A while back I was falsely accused by FORMER church friends of thinking 'why me'.  They all assume because I am angry and not being sick 'gracefuly' (what in their eyes is graceful) that I am saying 'why me'.  That isn't the case at all.  I'm ticked that this could happen to anyone. 

Yes, they are FORMER friends.  I don't have the energy or desire to deal with that kind of bunk.
(see my thread about 'fight with former best friend about sjogrens - says it all).

Anyways .. no 'why me' here ... just 'why anyone' ... (if you all can follow that)

[Lesleybird]

 You are in such a dark place right now. Thrush doen't kill a person, I don't know if other persons with Sjogren's can't take vitamines  and minerals for their bones. There is no reason for a Sjogren's patient to be on a special anti-inflamatory diet, or a high protein diet.....just a healthy diet. The way you talk you might as well go and dig yourself a hole in the back yard. We can go outside if we stay in the shade or wear protective clothes. I think you are very depressed and need some help.  Are you on any medication for depression? Hope you can get some help.   Lesley

[LizPetillo]

Thrush doen't kill a person, I don't know if other persons with Sjogren's can't take vitamines  and minerals for their bones. There is no reason for a Sjogren's patient to be on a special anti-inflamatory diet, or a high protein diet.....just a healthy diet.

You are dead wrong.  Thrush CAN kill if left untreated.  I am unable to take antifungals.  Also there is EVERY reason for Sjogren's patients to be on anti-inflamatory diets.   It is a FACT that breads, pastas, and sugars trigger AI cascades.  This months newsletter from the Sjogrens foundation confirms it as well as many other AI sites.   The newsletter published an Anti-inflammatory diet - with includes the fact that breads, pastas and sugars are a big NO-NO for Sjorens patients.

Even a bite or two of spaghetti - without sauce - and I have a flair for 2-3 days.  Bread is even worse.

Obviously I am not alone with this since even the Sjogrens foundation recognizes it and felt the need to publish the information this month.

Truth is truth.   Drugging me up to shut me up won't change the truth.  

Oh .. and I didn't say we couldn't go outside.  I said we couldn't go in the sun.  Both because of the disease and because of the medications.  No sunshine = less vitamin D and more broken bones (and head colds they are now saying).  That's also the truth.