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Sjogrens Topics => Living With Sjogren's => Topic started by: LizPetillo on September 03, 2010, 04:05:34 AM

Title: I don't care what "they" say ...
Post by: LizPetillo on September 03, 2010, 04:05:34 AM
I don't care what "they" say .... this disease IS fatal.  It may not be quickly fatal.  But everything about it hastens death.  Of course, you only die after it has squeezed the life force from you and made life heck for a while.  Which makes this an evil  FATAL  disease. 

Think about it for a minute.  We can't eat the proper foods anymore.  They trigger the disease.  So we don't get proper nutrition which leads to other problems.  (and now I can't take vitamins because I have reactions to them!  everyone responds to this disease differently)  We get kidney problems.  Not only because of the disease itself, but because of the huge increase in protien from the anti-inflammatory diet we need to be on.  We get liver problems from the disease and the drugs.  We get THRUSH which can be fatal if not taken care of (and some of us can't take the drugs!).  We can't get the exercise that our hearts need because of neuropathy and/or fatigue.  We can't go in the sunshine anymore.  Ever.  Both because of disease flairs and the medications.  Sunshine = Vit D.   Both the medications and the lack of sunshine promote osteoperosis and brittle bones.  We also fall down and get wooozy a lot which means, when coupled with the weak bones ... broken bones.  1/2 of the people who suffer a broken hip die in the first 6 months afterwards.  All the recurring and frequent broncitis and pneumonia take their toll on lungs that are weak and dried out from the disease.

And then there is the emotional toll that is taken on the body.   Depression (80% of Sjogrens patients get it) and stress take a toll on the physical body.  There is a direct response and corrolation.

Oh .. this disease is fatal alright.  It just takes it's sweet time finishing the job.  And the death certificates don't ever say 'sjogrens'.  They say Pneumonia or kidney failure or _________.  But never Sjogrens, which is the real demon.
Title: Re: I don't care what "they" say ...
Post by: Scottietottie on September 03, 2010, 05:57:45 AM
Life is fatal.
Title: Re: I don't care what "they" say ...
Post by: Seeker on September 03, 2010, 07:09:58 AM
Then treat each day as a gift, and live life to the fullest.  Cherish each moment with family friends and others. Give and others will give back to you.  Each day is an adventure waiting to happen.

Seeker
Title: Re: I don't care what "they" say ...
Post by: navydad on September 03, 2010, 08:36:37 AM
Liz,, I agree its a death by a thousand cuts,, now its being called into question if I even have it,,, but regardless,, I know what you mean,, I loved the sun,, I loved the heat,, yesterday while out walking the dog the sun felt like it had scalded the skin off my body,,, I just wanted to cry,,
  So I guess I get sunshine out of a bottle,, ya i want to live like that,,, it got down to 60 this morning,, broke out my fleece pajamas,, hooded sweatshirt,,, ya,, I love what this has done to my body thermostat,, I have a hard time living life to the fullest when I waddle like a duck,, (neuropathy in the feet),, eat something and have it get stuck half way down my throat,,,,Man what I would not give to have a pizza loaded with pepperoni,, or go toe the frig and grab a handfull of salami,, but that would screw up my mouth,, along with my guts,,,
  I have some nice shiny new shocks I would love to put on my jeep,, but the thought of even considering using tools to replace them has me cringing,, plus theres no sense in doing it becasue I know its going to hurt to do it,, I KNOW IT WILL HURT,, My shins feel like they been beaten by a ball bat,, I had thought it was bone pain before,, but I kow its the nerves,,
  I miss adventures,, I would leave the house for hours taking long walks in the woods,, I dont sare do that now,,, I miss the beach,, I miss the smells of the ocean,, swimming in the waves,, but thats all behind me,, I could not tolerate the temperature of the water
  Yes it kills us slowly,,, I kow life is fatal,, but it sure would be nice to go on our own terms,, which I know is impossible,, but it would be alot easier if we didnt have this crap to deal with,,, I have had and prob have thrush again,, its a miserable thing,, I hate it,, I have had it over and over again,, and nothing really took care of it,, nystantin never worked,,, the meds made me sick,,, dont eat this or you will get it,, dont eat that or you will get it,,, i guess we could try eating dirt and stones,,, salad with certain dressings,,, hardly any meat,, my stomach never knows whats coming down,, no more sweets,, and I loved them,, hot cinnamon rolls,, popcorn,, (drys me out),,
 WINGS,,, man I miss wings,, smothered in hit sauce,, washed down with a cold beer at my local bar on tuesday nights,,, ya it kills you,, give up everything you ever knew and loved,, and try to turn your life 180 degrees around,,, right now i;m still trying to figure out how to turn,,, for those that have,, my hats off to you,,
Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 03, 2010, 09:40:05 AM
Then treat each day as a gift, and live life to the fullest.  Cherish each moment with family friends and others. Give and others will give back to you.  Each day is an adventure waiting to happen.
Seeker

Each day for me (and others with this disease) is not a gift. 
It's a painful chore that can't be cherished .. only put up with.
I have nothing to give, I'm physically and emotionally exhausted.
The only adventure each day has is .... gee which nasty symptom is going to take the lead today.

This is a progressive FATAL disease.  It kills the body, the mind, and the spirit.
Too bad the medical establishment poo-poos it. 

Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 03, 2010, 09:41:55 AM
Man what I would not give to have a pizza loaded with pepperoni,,
Spaghetti with meat sauce ... buttery garlic bread ... Oreos and vanilla ice cream ... all on the beach with the sun shining and dancing on the tops of the waves ....
Title: Re: I don't care what "they" say ...
Post by: navydad on September 03, 2010, 09:54:44 AM
Amusement parks with the rides that slam you from start to finish and jump back in line to do it again,,,, Whitewater rafting on the Yough river, class 3 and 4 rapids,,, water ice cold,, doing it on a hot day and jump out of the raft on the calmer sections to cool off.
  Onion bloom with ranch dressing at Outback steakhouse,,

Holiday picnic at my sister in laws,, Memorial day,, July 4th,, and upcoming Labor day picnic,, so much food,, 25 chickens on the grill ,, been cooking since early morn,, freash tomatos out of the garden,, rich cholocate deserts, beer on tap,, No thanks,, just water for me,, oh its warm out of the tap,, ok, that will do, everoyn riding quads through the fields,, or dirtbikes,,, (sure miss that),,, Horse shoes,, ya,,, it takes the life right out of ya, still looking for that hobby that I dont need hands for,, or legs,, tried shuffling cards last night,, what a joke,, LOL,, My sister has to write out my checks now,,, I cant do it,, retirement is grand,, and if I see one more AARP commercial I;m going to scream,, or JG wentworth,, its my money and I Want it now,,,
Title: Re: I don't care what "they" say ...
Post by: inga on September 03, 2010, 10:09:38 AM
Half the people that break a hip and die within 6 months are over 85.

Yes, this disease can have consequences that are life threatening.  Many issues can be managed.  But attitude, THAT is the single most important factor in dealing with any chronic or terminal disease.  I used to work on a cancer unit, at a university hospital....all kinds of desperate cases....Guess what rooms the nurses came into and stayed in the longest?
Title: Re: I don't care what "they" say ...
Post by: navydad on September 03, 2010, 10:16:27 AM
The break room?
Title: Re: I don't care what "they" say ...
Post by: inga on September 03, 2010, 10:34:15 AM
I am a registered nurse. 

I never even got a chance to eat on my shift.

 I spent my time with the people who had a good attitude, and that did not always mean denying they were dying.  I spent many nights with dying patients discussing afterlife, what it is like to die and what not....many nights helping people grieve.  People that were angry with me, for THEIR illness, generally were not ameanable to conversation or even progress toward resolving their emotional issues.

Navydad, I think you need to get some pain control and a counselor to help you make the most of what life you have left.

Misery loves company.

I don't blame any one but fate for what I have....and I am just as sick as you are.....minus all the procedures, since I opted out on stuff that didn't have the risk verus benefit structure I wanted.

Venting is one thing, but living misery day after day after day........I am not sure what any of us can do for you.

Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 03, 2010, 10:43:07 AM
So ... fake being happy and pretend, along with the medical establishment, that this disease isn't really fatal?
yep.  Okay.  Got it.
Nevermind.  I'll go to my happy place now.   
Later.    :-[
Title: Re: I don't care what "they" say ...
Post by: Seeker on September 03, 2010, 10:51:25 AM
Inga, your absolutely right, attitude is very important.  We lost my father in-law to blood cancer last Jan.  Because of the treatments, his face looked like it was hamburger.  He lost all BM control and he was in horrible pain. To top it all off he had a roommate at the rehab center that had a horrible attitude (Rollo).  

Rollo would report nurses for things they did not do.  He would make up reasons to call the nurses, just so he could berate them.  He had such a fowl mouth he could peel paint off the walls.  

Through it all my father in law always had a kind word for Rollo.  He would treat the Nurses and staff like family members.  He accepted what was happening to him with grace and love.  When he passed on some of the nurses and staff were crying.  Many of them came to the funeral.  

Yes, all the things others, and myself included, are going through is disheartening, But attitude and love win out.

Seeker  
Title: Re: I don't care what "they" say ...
Post by: magistramarla on September 03, 2010, 11:18:16 AM
Wow, I have to agree with Inga - attitude makes a huge difference.

  I've had to give up a teaching job that I loved because of this disease.  On the other hand, it gave my husband the freedom to pursue an opportunity to get his PHD.  We're living an adventure, moved to a beautiful coastal community and moved into a much smaller place that is much easier on me to take care of.

  I absolutely refuse to let this thing get me down completely.  Of course, I get angry that I can't to things at the pace that I used to, and I have to take a day after the activity to just rest on the couch, but I still do things.

  We had the opportunity to travel to Greece this summer.  I took my cane and my wheelchair and had a blast.  The wheelchair got us free admittance to all of the museums there - yeah!  I was lifted to the top of the Acropolis in my wheelchair.  The trip up there was almost as much fun as seeing the Parthenon when I got to the top!

 My daughter sent my 11 yr. old grandson to visit me for two weeks.  I had all kinds of fun doing kid things with him - we just alternated the strenuous stuff with movie days so that Grandma could rest.

  I've gotten myself elected second Vice President of The Officers Students Spouses' Club.  I'm the oldest member, and I'm having fun with all of the young ladies in the group.  I was just in charge of a garden party this week.  I delegated the heavy work to the able-bodied young women, and the party was a success.  I was exhausted and down on the couch yesterday, but it was worth it.

  Today is my B-day.  I'm resting up, because we're going to The Greek Festival on Fisherman's Wharf this weekend, and then to The Italian Festival at the same place next weekend.  We'll probably take my wheelchair so that I don't get worn out and I won't have to worry about finding a seat.  
I'm not shy about using the cane or the wheelchair.  That way, I can still do the things that I love to do, just in a different way.

  Yes, the AI issues have slowed my life down and changed it, but it's not all bad.  I hurt a lot, don't get me wrong, but I've found  that I can push the pain to the background if there is something that I'm really determined to do.

 Hang in there guys, and don't give up.
Hugs,
Marla
Title: Re: I don't care what "they" say ...
Post by: Seeker on September 03, 2010, 11:30:34 AM
Happy Birthday Marla.  Many happy returns.

Seeker
Title: Re: I don't care what "they" say ...
Post by: navydad on September 03, 2010, 11:57:15 AM
When I was working I was one of the guys that got the lights back on after a snowstorm, working out of a bucket truck with winds whipping by and when we couldnt shut the power off to do maint because a Hospital might be involved we worked on it (hot),,, up to 25,000 volts,, For teh Nurses out tehre,, I give you credit where credit is due,, BUT i have run into my share of nurses who just came in,, did there hours and left,, you saw them twice, once to come in and take viatals at the beginning of the shift and if you didnt need anything,, at the end of the shift to take vitals,, but thats neither here nor tehre,,, its a personal decision what we do or did with our carreers,,
   I am happy that you were able to see Greece, but I dont think I;ll be seeing that anytime soon,, I can see it on Discovery channel,, but I would have to take at least 30 suitcases,, I change clothese at least three times a day,, a set of clothese for being cold in the morning,, tear them off when it gets a bit warmer,, then back to cold weather gear in the evening,,
  When I had the (procedures),, I was grasping at anything to stop this madness,,, and when your told by the surgeons we think this might help,, you grab at it,, I grabbed at it like I would grab a lifevest on sinking ship,, but when it didnt work,, and you tell them about it,, you get,, well we tried,,
   I was never a stay at home person,, I never saw the inside of my house unless I was working on it,,, going and coming home from work and to sleep,, now its my prison,, sure I need pain control, and I will see next week what can be done,, but its going to take a lot,, lining up rides,, depending on people to take care of me,, which I cannot wrap my head around,,
  And I agree attitude is everything,,, and my attitude is bad,, I grew up as the one who could do it,, get things done,, the go to guy,, friends by the boatload,, and yes Ihave called some of my old friends at work and I have heard,,, I;ll stop by for coffee one evening,,, I still have that pot of coffee ready to cook,, heck, I forget what most of them look like
    After all is said and done I may not have SS,, but I did have symptoms before all the madness of procedures started,, again,, I believed the Doctors,, they said I had it,, Hey,, i;m not the (expert),, you tend to belive what there telling you,, I know different now,,, but even if I dont,, whatever caused this SFN HAS destroyed my life,, I had friends in from Indiana 3 weeks ago and I took them on a walk on a hiking trail,, I strugged every step of the way,, eventually Joe said,, COlleen and I are getting tired,, lets head back,, I know they were just trying to sto me from killing myself tripping on stones,, falling down and saying,, dam stone jumped and grabbed me,,
  I;mnot college educated but i;m not stupid,,, I know enough to do research on this stuff,, and it isnt good,, I know I;mnot going back to my old self,,, not even 50% of what I was,,, but really what kind of life is it when all you look forward too is going to the pain clinic,, get some meds,, try them out and see if this works,, if not,, try this,, or this,, lets try this mixed in with it,,, (Everything we do to our bodies has a negative effect also),, so Liz is right,, it is my opinion,, and mine alone,, that for every day we have somesort of chronic illness,, it probably takes three days off our lives,,,,
  When my father was Dx;ed with lung cancer,, he was told 6 months,,, but he grabbed at the radiation treatments they offfered,,, I thinkback at how that man suffered,, his skin looked like a turtles skin,, hard scaly,, and I watched him getting weaker and weaker,,,, they say death has no smell,, I smelled death on that man,, and after about 5 motnhs,, they did a xray and hte radiation doctor said LOOK,, LOOK how much the tumor has shrunk,, we didnt know it had went to his stomach,, so one niht we were watching football,, and he said he had to go to the bathroom,, I heard him hit the floor,,, I went in and it looked like a homocide,,, he had a anurysm and bled out,,, so yes I;m ticked about all this,, first my dad,, then me with this,, my mom is perfectly healthy,, but we dont talk,, I have no desire to have a life with her,, my sons have moved out and I hear from them about once a week,, maybe two weeks,,, but they see dad stumbling around and dont understnad or think I;m faking it,, but it was ok when Dad was the one that got them to bsall games and hockey,, my wife NEVER did it,,, I dont have a Hubby or Wife that is so understanding,, I have a dog and a bird that understnad more about this then most of the people who live in this miserable valley I live in,, well I need to get going,, I need to get the wool socks off and get some ankle socks and shorts on,, it got warm,,     


Happy B-day Marla,,, hope you have a good time this weekend,,,
Title: Re: I don't care what "they" say ...
Post by: drylady on September 03, 2010, 12:24:14 PM
Hi ,

 Inga remember some people prefer the misery. They can have it if they want, it's a free country.  :P
Title: Re: I don't care what "they" say ...
Post by: navydad on September 03, 2010, 12:37:04 PM
I dont think people prefer misery,, oh I guess some do,, but when its dumped in your lap,, and you have tried everything in your power to try and get rid of it,, its easy to just give up and feel (Miserable),,
  I think some people actually get a kick out of being sick too,,
Title: Re: I don't care what "they" say ...
Post by: Julie on September 03, 2010, 12:54:56 PM
These forums are suppose to be a place we can count on for venting, supporting, comparing, helping, learning, and for all of us to have a place to come to for answers and some empathy to help us feel better emotionally.  Even though all of us are struggling with daily autoimmune issues, this disease affects everyone differently, so I think it's very UNFAIR for anyone to use the harsh words of telling another to adjust their attitude.  

I agree that a positive attitude helps, BUT as much as we read the words of what others are going through, we can't physically feel or truly know the pain and suffering they are experiencing.  It is VERY hard to feel upbeat when the pain is severe, the symptoms are crippling, and/ or clinical depression has taken ahold.  None of us WANTS to feel this way, and I have no doubt that each of us has tried as best we can to hang on to all the positives that we can find.  It just gets hard when there seems to be no answers..no relief.    

It's far easier for some because of their tolerance to pain, the support they have within their homes, the effectiveness of meds on their symptoms,  their monetary situation,their level of faith,  etc etc. A lot of factors play into a person's attitude and outlook on life.   Please remember that even though we all are suffering, we are all different.

I hope we can continue to be a SUPPORTIVE group.  That is the reason that we come here.  

Wishing you all well.  

Take care
Julie

Title: Re: I don't care what "they" say ...
Post by: Julie on September 03, 2010, 12:57:46 PM
Lizzy-

It looks like you wrote your post at the same time that I was writing mine.   And... they sound VERY similiar!  I agree with you 100% 


:-)  Julie
Title: Re: I don't care what "they" say ...
Post by: aussie mum on September 03, 2010, 01:25:51 PM
(((((((((Navydad))))))))))   -   (((((((((LizPetillo))))))))))

Sending gentle hugs from Australia hoping that there is someone out there will find a way to make you two feel better.

Take Care





Title: Re: I don't care what "they" say ...
Post by: Seeker on September 03, 2010, 01:29:47 PM
G'day all, wow this thread certainty got intense.  I would like to throw the hand of peace to you all.  If any of my comments fueled the fire.  I am truly sorry.  If it appeared that I was insensitive to any of you I will take this as a lesson and be more sensitive to others feelings.

No member of this sight should ever be afraid to make a comment because they, as one has said, might get blasted.  That's not what we are all about.  

Seeker.    
Title: Re: I don't care what "they" say ...
Post by: Rob_MI on September 03, 2010, 01:42:22 PM
Well as long as people are blasting...I am pretty new here.  I am having very difficult issues.  I am not angry or need an attitude adjustment.  That stuff never entered my mind UNTIL I see people here saying certain things about others.  Its getting to be an issue with me logging in here and seeing these posts by people saying essentially "GET OVER IT!".  Some people are certainly not as afflected as others are.  Maybe if you trade shoes with them you might see something.  I don't really recall reading many, if any, posts about someone SO ANGRY about SS and other AID.  The anger part is someones own opinion and a judgement they made, not the poster.  I come here looking for advice, support and understanding from others but it seems that its getting harder to come here because people calling others angry and needing attitude adjustments.  I'm afraid to post any questions or concerns anymore for fear someone will think I am complaining, angry or whatever!
Title: Re: I don't care what "they" say ...
Post by: Rob_MI on September 03, 2010, 01:49:29 PM
The break room?

 :)
Title: Re: I don't care what "they" say ...
Post by: irish on September 03, 2010, 05:21:16 PM
I have been on this site many years and many people have come and gone. Right now if I was new I would be looking for the exit. The amount of complaining has gotten far out of hand. I don't  know about the rest of you but I want to come here and share information about disease, treatments and what is new in the autoimmune world. Of course venting is part of the program. Check back at the many posts over the years with people venting and you will find lots of support from the other members.

What isn't as noticeable back then is the constant, unending complaining that never changes. People will try and answer to solve problems on this site or give support lately, etc, but it doesn't seem to work anymore. It is the same thing over and over. Anger will ruin this site if it is not addressed. It is not up to me to solve any problems, but I ask of all of you, including myself, to look deep within yourself and see if, perhaps, there is a better way for us all to communicate with each other and give support. Vent and complain, but after that is said and done we all have to strike a happy medium and exist in harmony in this world.

People who are chronic complainers seem to try and get something out of others only the "others" have no clue what it is that the complaining person wants. Those who  have issues  need to go for professional help because we are not a psychiatric counseling center. We are simply a group of autoimmune souls who need some human exchange in our lives that educates us, entertains us and sometimes lifts our spirits on a miserable day.

It used to be fun to come here because in spite of everyone hurting, not feeling well and not getting the answer to all their questions, we all had one thing in common -- a sense of humor and the ability to not take ourselves too seriously. The anger that emanates here lately is truly dragging all of us down. No one is going to throw any stones here but why in the world can't we have some fun while we are learning and sharing.

I am like most people and am home much of my life and enjoy the conversation with others plus the information. Lately it has become hard to understand what is transpiring. People will start a new post and someone will make a remark and many times it is just left in limbo. There is so much complaining being done that it is becoming a "dark force" on this site. No one wants to discuss things like they used to. It is beyond me folks.!!!!

After all is said and done I want people to realize that there are very few who are complaining and I would hope that all would hang around to see if we have the "caboles" ( I think I spelled it right) to get this mess cleaned up. Just remember that most people on the site are contributing enjoyable stuff.

I just hope and pray that we can get this resolved. Irish ;D
Title: Re: I don't care what "they" say ...
Post by: Carebear on September 03, 2010, 05:40:15 PM
Good evening everyone,

I too am new to this Discussion Board, and I too will likely incense many of you with my reply.

It has troubled me so much lately to read all the personal attacks, harsh words and negative comments. The sarcastic, snippy remarks remind me of High School.

We are all suffering. So please treat one another with more courtesy.  

For those of you who start a posting and don't care for the replies, I can only say one thing...don't ask a question if you are not prepared to have an open, direct dialogue.

That's my opinion...I'm sure you'll "zing" me as well.

Title: Re: I don't care what "they" say ...
Post by: Prairie Gal on September 03, 2010, 05:47:27 PM
Irish, I think you meant "cojones." Your spelling isn't the greatest, but your meaning is clear!  :D  

Meanwhile, folks, can't we all try to get along?  And if someone's post really bugs you,  use your browser's 'back' button.

Prairie gal
Title: Re: I don't care what "they" say ...
Post by: Bobbie on September 03, 2010, 05:52:40 PM
Well said Lizzy, Julie and Carebear ........  :)
Title: Re: I don't care what "they" say ...
Post by: eyeamdry on September 03, 2010, 05:57:55 PM
Happy Birthday, Marla.  Many more to you.  Have a piece of cake for me.  Lucy
Title: Re: I don't care what "they" say ...
Post by: gphx on September 03, 2010, 08:10:31 PM
If you can't do anything and much has been taken from you it isn't attitude, it's just your reality and what you have to deal with. If people can't be honest about what their life is like here I don't know where they can be.

Six months ago I was very much like Navydad and through some miracle have pulled back from that significantly in a positive direction. I seriously give thanks every day for the ability to use my arms and legs again and be able to sleep without twitching like a dying fish. At the time it was happening I'd tell people about it and it wasn't real to them. It was as if I were surrounded by aliens and no one cared, including my doctor. It was almost like living in a zombie movie.

Not one of them seemed the least bit concerned about their attitude.

I understand what you're saying. People often bend over backwards to help those with a positive attitude and much research shows a healthy attitude helps create a healthy immune system. I think a positive suggestion was offered, not censorship. I also feel it is healthy for some people to get what is bottled up out. They aren't crazy, the rest of the world is!

Have a great week!
Title: Re: I don't care what "they" say ...
Post by: gphx on September 03, 2010, 08:27:40 PM
I'd also like to suggest that the accounts of some of our really ill members can be very helpful to the new members who may say,'Hey, that's me too'. They may be the only people, not just here but anywhere, they can relate to. For some that identification and sense of belonging can be extremely important.

I'd hate to see this board go down a road of deciding what should be important to who and why.
Title: Re: I don't care what "they" say ...
Post by: Epson on September 03, 2010, 08:41:33 PM
I felt the same way about SS a few years back, then I found out that it was a lot better then cancer or three or four other illnesses I have.  Life is a Smorgasbord of crap sandwiches, may I have another?
Title: Re: I don't care what "they" say ...
Post by: eyeamdry on September 03, 2010, 08:58:24 PM
Good to see you again, Epson.  Don't know if it was you or me that was away.  Maybe neither.  Lucy
Title: Re: I don't care what "they" say ...
Post by: Patze on September 03, 2010, 10:54:14 PM
Nah Epson, I think you have way to many plates as it is!  Teasing my friend, and I sure hope that you are feeling a bit better these days.

Take care now -

Patze
Title: Re: I don't care what "they" say ...
Post by: Linda196 on September 04, 2010, 06:36:42 AM
First, I want to make very clear that I am posting my own personal opinion, what follows is in no way a "moderator statement" nor does it reflect any forum policy, this is strictly LINDA. And I'm sorry, but Linda is long-winded!

Just as Sjogren's affects each of us in our own way, and each of us reacts to treatments in our own way, we each have our own emotional response, and that is a deeply ingrained instinctive reaction that can not be changed by other's suggestion. What can be changed, even if ever so slightly, is how we deal with our emotional reaction. What is common to all is the underlying trigger of those emotional reactions, and skilled psychologists have developed techniques to deal with those triggers and reactions, and those techniques, used by each person in their own way, can and do help!

I'm basically a Pollyanna person, have been since my earliest memories, which involve waking up in a hospital bed after what I learned was a fall from a roof, and being glad that I wasn't wearing my new pedal pushers when I fell and bled all over my clothes! My Mom got a great laugh about that. That attitude has helped me a lot, but even that had to be tempered at times, to allow me to grieve for losses, and learn to cope with new situations that resulted from them.

For those who try and manage to be positive at all times, I commend you, but caution you that this can lead to denial. For those who try and so far haven't been able to, keep trying! For those who haven't so far found anything to even pretend to be positive about, try, every day, no matter how difficult, to see or hear one thing, even if its something so simple as a child laughing next door or the fact that years ago you painted a wall a colour you still like; hopefully that can become a habit and finding things will become less difficult. I also urge you to seek the help of someone, anyone, who understands loss and can help you learn to deal with your losses, which are every bit as real and serious as for people with cancer or those who have been bereaved..

The intention of this board is to provide that kind of helpful place, and I'm sure that any suggestions made that may sound harsh or pushy, are meant well, and people do realize that not everyone has the same symptoms, reactions, losses, or coping mechanisms... it's just such a need to reach out and help that leads them to their posts.
Title: Re: I don't care what "they" say ...
Post by: cmclien on September 04, 2010, 07:26:35 AM
As a new person to this board I am torn about this whole subject but will give my opinion.  I suppose I came here looking for information, knowledge and support firsthand from others that have this disease.  I thought thats why it was here.

I have stayed away the last few days because of some of the posts bringing me down so much.  It freaks me out and makes me anxious because I think is that where I will end up?  Though I know the answer is for most people NO and some people seem to have a mixture of diseases with symptoms coming from all of them.  I told my husband I don't know if I can keep going there but thats not fair for someone like me either right?

So after giving this all some thought I decided I think people should be allowed to vent I just don't read them anymore, or if I start to and if its too acidic (??) for me then I get out of it and move on.  I guess the bottom line for what I think is those people should be allowed to say what they have to say and those who are with them should be allowed to respond and those of us who don't like what is being posted should be allowed to NOT read or respond in return.
Title: Re: I don't care what "they" say ...
Post by: goodheart on September 04, 2010, 11:51:42 AM
I am new here, just got diagnosed with Sjogren's 8-9-10..This stuff is pretty scary to me.  But I appreciate the honesty. I have been sick for about 3 years and finally went for help.  My heart goes out to NAVYDAD, he seems completely wore out.  I wonder how long he has been sick and should I expect to get like that. 

I also appreciate the upbeat people too, it helps alot.  Although I don't mind the negative ones either (to a degree)
Thanks for all the info.
Title: Re: I don't care what "they" say ...
Post by: navydad on September 04, 2010, 12:17:37 PM
Goodheart,, (love your name),, NO ONE can tell what the progression of this disease will be,, If you have read over some of my post,, you will see that I have been told I have SS,, and been told by the Mayo clinic that I dont,,,
  But theres plenty of people here that DO have it,, and some have the annoyance of dry eyes and dry mouth,, which can be bad enough,, but toss in some neuropathy to go along with it,, and a few other (gifts),, and you can see it can get quite disabbleing


Title: Re: I don't care what "they" say ...
Post by: cmclien on September 04, 2010, 12:39:22 PM
Navydad - So if Mayo says you don't have SS then what did they diagnose you with?  and what were their reasons for saying you don't have SS?  I know you're seronegative but my rheumy (who I think knows his stuff and has been doing this for 20 years) just doesn't buy that as a total basis for ruling out SS (thats why I am wondering what they told you).

Can you have SFN by itself as a disease?  I think you can right?  I don't know what your other symptoms are but did they rule out SLE?  You can't go out in the sun right?  I read that is a symptom of lupus, not SS.  Also, is your thyroid ok?  You sound like you're cold all the time too. 

I have read so many of your posts and you seem to be really on top of things with your own health but it doesn't sound like much has helped you.
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 01:23:20 PM
It is the neuropathy that is so disabling, and I know, I have it.  It was my primary diagnosis.  I have autonomic and the sensory neuropathy....and a high ANA, and a positive lip biopsy for what that is worth, and it hasn't been much.

I am on the verge of needing some type of ambulation aid.  The pain is very bad as well, as it ALL bodily funcitons, from gastroparesis, to arrhythmia, to messed up circadian rhythm.

Every day, it takes will power to get out of bed, since my ankles are kind of frozen and I can't bend my ankles and when I land on my feet, I feel terrible pain, but, I have no choice.  My entire family knows it hurts, and there is no need to tell them every time I walk, cuz they see it.  Even worse, I fear this is genetic.....I am sure they fear this too.

It affects my hands....there isn't much I can do without help, in terms of my hands, but I have good days, and I do what I shouldn't do and then end up doing 'nuthin' for two weeks.

No, there is no pain med that helps, and one gets  tired of begging for them....it just robs one of dignity.

So there is no denial as to what is coming, or even what is.....IT JUST IS.  I won't lose a single day of my life to it....today, I went to see some Tall Ships....and my cognitively disabled kid knocked my brains out with the tailgate of the car.  She sat in the car and cried all the way home.  It would have been less dramatic had she not knocked me flat out onto the ground...nice ashpalt parking lot.  And truth be told, there are TWO goose eggs one on each side of by skull, but she can't see the one in back and she doesn't need to....she feels bad enough about the one in front.

Was it worth it....?  yep.

 Am I Pollyanna, heck no, but I was relieved to get up without the EMS being called and my clothes severed off of me for no good reason.  I am fine, really.  I have nice pictures that make the day look really nice and when I am senile, as my mother and grandmother were I may look at those pics and remember something besides the knock on the head and fall on the butt.

The thought struck me to stay home, today, since, I am in pain now, since I have to sign a pain contract now, 'new policy' at my clinic and I declined, on the grounds of 'dignity' so I am living on neurontin and tylenol....which, btw, doesn't work much....but, what the heck....it at least makes me feel like I am taking something....can we say placebo.

No, life is not a bed or roses....not at all.  Hubby went on to the gun show....I told him, 'No pistols'.

Life is about grit....and I am not talking about what I feed my chickens.  I carry my own pack......I  hobble where I have to go....I clean up my own doggy doo.....and onto the next day.  If you need a lift, I will pop you in my red sled and tow you until I can't take it and tell you to walk the rest of the way on your own....you may get a 50 foot ride these days.

I don't think any one can look at any one case on here and predict where this disease will go.  And I am a firm believer that attitude doesn't dictate the course of our disease....the most positive person can die early and frankly, that is usually the case.  The angriest people live the longest but not happily....so somewhere in the middle lies the red road....the middle of the path,  where one does not fall of either side into oblivion.
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 01:43:45 PM
That is 'Bed OF roses', but I got hit on the head today, so I am not quite perfect today.
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 01:47:07 PM
BTW, hubby is back from the gunshow and didn't buy a thing...he never does.  And now he took off with the 3 labradors to walk them.....and I am stuck here watching HGTV, which always lands me on overstock.com or ikea.com, PLUS the baby poo'd 2 days worth of organic sweet potatoes....and I had to change it....not grampa.  It has been a long day.  I feel like life is one of those 'Zappos' commercial.  I am sure I hid a vicodin somewhere....if I could just move the mattress......
Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 04, 2010, 01:51:17 PM
I stand by what I said ... "They" say this isn't a fatal disease.
 I think it's pretty obvious that it IS.
The first thing doctors say is 'well, it isn't like it's fatal .... be happy ... it's all attitude'.
When people are told that it's Sjorens, the first thing they say is 'what's that?'
Then when they hear it's 'not fatal' they don't give it as much attention.

When you look at the systemic part of this disease, as a whole ...
When you look at the damage physically, spiritually, emotionally ...
When you look at the problems that come from the frequent complications ...
This disease DOES shorten lives.

I wish the information available didn't immediately come out and say 'not fatal'.
That tends to make people poo-poo this, when in fact it is a very serious disease.

I'm not going to fake being happy when I'm not just to get a random nurse to
speak more than a few words to me.
I DO TRY to find tings during the day that are happy.  Today it was the nice
breeze and the 78 degree day wit no humidity.  I love fall.  It feels like fall coming.
But when I feel like death should visit and doesn't ... then people need to know.
If we all fake happy .. then no one will take this disease seriously.  
At least that's what I tink.  Let the pain be shown, otherwise, Sjogrens will be
ignored for something that is 'worse'.  
The squeeky wheel gets fixed.  The quiet one is ignored.
Sjogrens needs to be known.
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 02:08:29 PM
Sjogren's FIRST needs to be defined. 

No, it does NOT strike the public as a 'fatal' disease, but Lupus isn't fatal, and people are surviving 25 years with Scleroderma.

I am darn sick....but it isn't as simple as a cure for Sjogren's, for me....or for Navydad.  We have negative ENAs.  We don't carry the antibodies that are definitive for Sjogren's. 

You can't cure a disease, that is 100 possible diseases, all called Sjogren's AKA Sicca or dry eyes and mouth.

Title: Re: I don't care what "they" say ...
Post by: Linda196 on September 04, 2010, 03:15:53 PM
@ Liz, I think you may have just defined the difference in our approaches to this whole issue! My doctors take me and my condition very seriously! They, not I, first looked for and identified the neuropathy connection; they, not I, insist on frequent testing, monitoring and analgesic prescriptions; and they, not I, pushed me to retire from what they deemed a much too stressful job. I'm sure the forms they filled out for me helped a great deal in my obtaining a disability pension on my first try.

I had to ask ( a couple of times) for a psychological evaluation to see if there was any chance that depression might be contributing to my physical deterioration. They did offer hormonal testing when I asked if my symptoms could be menopausal, as the endo said "to show me it wasn't so!" I've pretty much had the opposite experience of just about everyone I read about here...I was convinced I was depressed, menopausal or hypocondriacal, and my doctors were trying to convince me I was really sick!

One doctor in particular (an internist and intensivist) contacts me on a regular basis to inquire about my condition, and to discuss any innovations he has heard of...and I haven't had an official consult to him for 6 years!

Yes, I agree that until the general medical population learns more about this and other AI conditions, and begin to take it more seriously as a whole, many people will continue to feel invalidated, and rightly so; but I have to feel very lucky in my medical support.
Title: Re: I don't care what "they" say ...
Post by: navydad on September 04, 2010, 03:19:23 PM
Oh boy,, thought this thread had died a natural death,,, but I will say this much,, the temp has dropped here about 40 degrees from yesterday,, from 96 to about 56,, now before I got this SS of whatever it is I have,, this temp drop would have meant nothing to me,, not a dam thing,, I would have loved it,, but its been nothing but torture,, Inga I am sorry about the eggs on the head,, its a wonder I am walking at all today,, my legs feel like two stumps that just scream in pain,,
  I tak the neurotin,, I dont think it does much,, my ankles and feet either feel cold or they feel like there broken, they hurt that bad,,, like you,, my hands are useless,,, absoulately useless, they are good for nothing,,, I drop things,, I cant feel things,, and tehy hurt,, like you I will have to face the (contract) on tuesday at the pain clinic,, and if they dont have a good plan of action,, I;ll continue to live on neurotin and stagger around the yard taking my doxie to the usual haunts,,,
 Today is the rib fest in Pittsburgh,, it used to be a great day for me,, I love ribs,, or did,, but like you, my guts dont work right anymore,, well I better shut mymouth,, I dont want to complain to much,, and my thyroid has been checked a hundred times,,, I guess its fine,, but Liz has some good points,,, its her point of view on what she thinks,, but again,, i;ll shut up,, I;lll play nice,,, but for those that dont have SFN,, it is a living heck,, I too eventually will need some kind of aid to get around,, Iknow it,, I can feel it getting worse,, and theres not a dam thing I can do about it,,, and I;m Pi&&ed about that
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 03:24:54 PM
"Saving Private Ryan" is on TNT.....something to do....makes me cry every time I watch it.  Riles up my PTSD.
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 03:31:08 PM
I just got my bjeuatiful new kitchenaid mixer, in yellow.....and I got a free year of Cooks magazine, and maybe this will inspire me to cook and eat.....if only it scrubbed floors.  (I don't know what possessed me to buy this, except I got such a fabulous deal, and for some reason, I figured I would live long enough to get some use out of it.)  If not, it will be a good to pass on to one of my girls....not the one that almost knocked me out today tho.
Title: Re: I don't care what "they" say ...
Post by: navydad on September 04, 2010, 03:35:59 PM
"Saving Private Ryan" is on TNT.....something to do....makes me cry every time I watch it.  Riles up my PTSD.
I was watching that too,,, the invasion scene is hard to take,,,

 I have the whole series of Band of Brothers on DVD,, I break that out once in a while,,, its pretty good too,,, I don thave a yellow mixer,, but I think theres a mixer somewhere in the house,,, only baking that gets done around here is done by dunkin donuts,,wish I could eat them,,, Man I miss so much stuff I used to eat
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 03:47:25 PM
Never watched BAnd of brothers, my son was deployed around that time and I couldn't watch it, good thing too, altho my son can watch it and also owns the Band of Brothers.  He did much better with his deployment than I did, even tho he came home with his parts a bit rearranged....Saving Pvt. Ryan is hard enough, altho, I did make it thru the entire WWII in HD.  My father in law was on his way to Saipan when he got wounded for the second time in Tinean.   

Geez this manual for my mixer has a 100 page manual, and the darn thing is in 3 languages I have to learn!  Why can't life be simple?
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 03:48:57 PM
BTW, have the wizards tried you on Baclofen yet?
Title: Re: I don't care what "they" say ...
Post by: navydad on September 04, 2010, 04:43:19 PM
I think they have used all meds from A to Z,,,,, and the new stove I got my wife has a 100 page manual too,, I just want it to cook something,, I dont need to put somethng in the oven,, set the oven on time delay and hope it comes on,,,

My dad was in the Navy in WW11,, he saw D-Day and also was in on the invasion of Sicily,, along with North Africa,,


My oldest who served aboard Subs told me of some of the missions they did,, hairy stuff,,,, when 9-11 happened I called him,, he was stationed at Pearl Harbor and they have a 6 hour time diff,, he was ticked that I called him so early in the moring,, I told him to turnon the TV,, he did,, hung up and I never heard from him for 3 months,, they put to sea,,, after we went into Iraq,,, I never heard from him for another 3 months,,, but I guess there boat sent a few cruise missles in there,,

I do have my grandfathers draft card from WW1,, where he spent most of his time in a trench,

I have the series (The Pacific),, which I dont find as good as B of Brothers,,,,,,,,,,,,,, But I give Hanks credit for what he has done for the Vets,,
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 04:52:30 PM
My son was an army FO, Baghdad, 2004-5, national guard....signed up before 9-11 and never expected to go to war, let alone be in gun battles. 

My son tells me almost nothing of any of it.  When he got wounded, he called to tell me it was an 'incident'.....He tells my husband and other son more....altho what he has told me, is enough....perhaps I don't want to hear more....I don't need to hear more to get the picture.

Yeah, it's nervewracking.  Doesn't help the nervous system one bit.
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 05:00:36 PM
Bless them all, I do not have that kind of courage or character.

Title: Re: I don't care what "they" say ...
Post by: Madderakka on September 04, 2010, 05:47:55 PM
NavyDad, my husband was on a submarine on 9-11 also. By some miracle I was able to get a call through to him when they sent him home to pack his stuff because the baot was still in pieces in dry dock or I would not have heard from him for months.  So I am thankful they were doing repairs that week. One of the boats was actually at the pier, pulling in from a patrol and they literally threw the ropes back at them and told them to turn around.
Title: Re: I don't care what "they" say ...
Post by: navydad on September 04, 2010, 05:59:56 PM
Where was he stationed at?,, My Brother in law was a master chief,, had 22 years in,, Navy tried to throw him out when he had 18 years in,, he developed Diabetes,, he had to get a lawyer to stay in and get his 20,, he got it in,, and had been out over twn years when he was killed this past February, he was on his way to work and went into diabetic shock,, and wrecked,,
 

What did your husband do in the Navy,, Mine went to Nuke school for two years then was on the boat for 4,,, What was your husbands boat,, USS Chicago,, SSN 721
Title: Re: I don't care what "they" say ...
Post by: Patze on September 04, 2010, 06:00:59 PM
Hey Inga, if you find something that will scrub floors too, let me know! :D


Patze
Title: Re: I don't care what "they" say ...
Post by: inga on September 04, 2010, 06:44:15 PM
I put my grandson in fleece pj's....he picks up a lot of dust.....
Title: Re: I don't care what "they" say ...
Post by: Seeker on September 04, 2010, 07:04:11 PM
I guess he can't pull the wool over your eyes, huh inga:)

Seeker
Title: Re: I don't care what "they" say ...
Post by: shevonne on September 05, 2010, 01:55:44 AM
Wow!
Title: Re: I don't care what "they" say ...
Post by: Suzie on September 05, 2010, 03:18:23 AM
Inga, are your little grandson's parents both in the forces? It seems unbelievably cruel that they could insist on both parents of a little child being sent abroad.

I really admire you for stepping up and taking this on, given your health. They're a joy to be sure, but phew!

 ;D Suzie
Title: Re: I don't care what "they" say ...
Post by: sugarbugar on September 05, 2010, 05:52:30 PM

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. 
Title: Re: I don't care what "they" say ...
Post by: shevonne on September 05, 2010, 06:03:11 PM
Ditto!!!
Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 06, 2010, 05:59:24 AM
@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!
Title: Re: I don't care what "they" say ...
Post by: inga on September 06, 2010, 07:02:36 AM
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. 
Title: Re: I don't care what "they" say ...
Post by: inga on September 06, 2010, 07:19:49 AM
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.
Title: Re: I don't care what "they" say ...
Post by: Suzie on September 06, 2010, 09:59:27 AM
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
Title: Re: I don't care what "they" say ...
Post by: inga on September 06, 2010, 11:16:45 AM
Suzie, you will do great!  We ALL will rise to meet the challenges in life. 
Title: Re: I don't care what "they" say ...
Post by: harrigan on September 06, 2010, 12:23:32 PM
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
Title: Re: I don't care what "they" say ...
Post by: inga on September 06, 2010, 01:36:45 PM
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.
Title: Re: I don't care what "they" say ...
Post by: denisezesh on September 06, 2010, 06:29:43 PM
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'''
Title: Re: I don't care what "they" say ...
Post by: eyeamdry on September 06, 2010, 08:52:23 PM
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
Title: Re: I don't care what "they" say ...
Post by: inga on September 07, 2010, 07:40:38 AM
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.
Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 07, 2010, 09:30:44 AM
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)

Title: Re: I don't care what "they" say ...
Post by: Lesleybird on September 07, 2010, 10:11:04 AM
 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
Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 07, 2010, 10:34:03 AM
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. 
Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 07, 2010, 10:38:19 AM
http://sjogrensworld.org/forums/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. 
Title: Re: I don't care what "they" say ...
Post by: navydad on September 07, 2010, 10:56:57 AM
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,,,  ;)
Title: Re: I don't care what "they" say ...
Post by: shevonne on September 07, 2010, 11:11:01 AM
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!
Title: Re: I don't care what "they" say ...
Post by: puccini914 on September 07, 2010, 11:13:36 AM
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?
Title: Re: I don't care what "they" say ...
Post by: puccini914 on September 07, 2010, 11:25:02 AM
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.
Title: Re: I don't care what "they" say ...
Post by: navydad on September 07, 2010, 11:27:14 AM
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,,
Title: Re: I don't care what "they" say ...
Post by: navydad on September 07, 2010, 11:29:42 AM
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
Title: Re: I don't care what "they" say ...
Post by: inga on September 07, 2010, 12:36:58 PM
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.
Title: Re: I don't care what "they" say ...
Post by: navydad on September 07, 2010, 12:55:42 PM
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 ;)
Title: Re: I don't care what "they" say ...
Post by: bloodless on September 07, 2010, 01:41:40 PM
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.
Title: Re: I don't care what "they" say ...
Post by: inga on September 07, 2010, 01:47:20 PM
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.
Title: Re: I don't care what "they" say ...
Post by: navydad on September 07, 2010, 03:09:53 PM
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,,,
Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 08, 2010, 03:45:39 AM
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 ...
Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 08, 2010, 03:48:27 AM
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.  :D
Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 08, 2010, 03:52:17 AM
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!
Title: Re: I don't care what "they" say ...
Post by: SLEEPY101 on September 08, 2010, 04:28:38 AM
Wheww!!! I just read this entire thread and I am so exhausted:) It was very interesting reading everyone opinions.

Everyday life I have a very positive attitude. I try to always have a smile on my face and be freinding even though I am in so much pain. I don't like to burden my family or friends with my complaining.

That's why I come to this site to vent. If I didn't have a chance to vent my feelings I don't think I would be a very nice person to be around. When I  come home from a horrible Dr appointment the 1st thing I do it come and vent then I am not so upset when I explain the visit to my family. It is  nice to know other are going through the same things I am going through.
Title: Re: I don't care what "they" say ...
Post by: inga on September 08, 2010, 05:26:54 AM
This disease has been awful for me, but was worse was when a drunk driver hit me and my 4 and 6syear old child, head on at 55mph, in a truck and we were not compensated, and this was way before air bags, or even the thought that one would ever escape death in a subcompact car versus truck.  What was worse was when my 9 year old was assaulted, in the worst way, and the perp only got 3 years.  What is worse is one of my girls has to have repeated surgeries to remove a recurrent vascular tumor that could occur anywhere in her body.  What is worse is that my son gave his health for his country....

What is good, is none of these people is angry!  This disease for me is so painful that I can not walk to the bathroom at night without wincing and groaning.....but this isn't the worst life has to dole out.  No one every promised me life would be perfect.  I was told it would be a challenge.

Call me simple, but, I kinda believe in the law of physics.....The universe, at least the one WE live in, has light and dark matter.  Things kind of balance in general, altho areas are chaos, things move toward homeostasis.....maybe even good and evil, balance.  You can't have one without the other.

I think any Supreme Being is pretty busy and really doesn't personally decide to bestow disease or abundance on any one person.

Some people have to be angry and that is fine....and God is probably a good place to direct that anger.  I hear he is all forgiving....so, what the heck, lay it on him.  I imagine any Supreme Being could absorb whatever vile we could throw at him/her.

I look at life more as karma....as I said, I was brought up Catholic, I no longer practice, since some things didn't fit my belief system....most of every religion doesn't fit my belief system....because life is so confusing.  I have found by experience that anger is a poison if held onto too long. 

Anger has its place.  Anger is not bad.  But it is toxic if it becomes a lifestyle.  It isolates one.  It hurts one's loved ones. It makes every one run from us.  It makes us lonely and bitter.  It darkens the life we live.

If it makes you feel better, be angry. Vent....but, I have to hang onto some hope that I will find the courage to deal with this pain and disability, and that others share that hope.  Not hope that this will be cured, it won't.  But hope that the human spirit can rise above pain and suffering.

This is the last I have to say on the matter.
Title: Re: I don't care what "they" say ...
Post by: shevonne on September 08, 2010, 06:19:24 AM
Inga,

You have the right to feel what you feel.  You have had a lot of situations in your life to help you come to where you are.  I am proud that you are there.  No one is trying to make you feel guilty because you can rise above the pain; it's amazing!  I think that one day I will be there also but right now I do have my moments and I need to express them.  However, I would never blame anyone for making the best of the situation.  Each individual will deal with this differently!  Just know that everyone is different; some strong; some weak; what pain I can tolerate; others may not be as tolerant.  Everyone grieves differently and there is no timeline on when it ends for each person.  People such as yourself can be so encouraging and compassionate!  It has been said that misery loves company; well I don't want anyone to join in my misery!  I want someone that is going to guide me through the paths and be proud of me as I am of some of you that are rising above this pain!
Title: Re: I don't care what "they" say ...
Post by: cmclien on September 08, 2010, 06:32:53 AM
Its almost like a new thread needs to be started here but Liz have you been tested for celiac?  Is that why you have malabsorption?
That would also explain your severe reaction to a few bites of pasta.
I really feel for ya, you seem to be suffering so much!  I'm not saying you should be on anti-depressants but I will say you don't have to feel depressed to need help.  Some people, like myself and my sister experience events in our life as anger not depression.  It has to do with how you were brought up, family dynamics etc. but feeling SO angry with no relief in sight is like a downward spiral.  I am not a doctor and therefore won't offer you advice on meds but maybe talking to a counselor would help and getting a professional opinion and having someone to talk to, to vent at would probably be very cathartic for you.  There are support groups too but if you're like me maybe not comfortable with the idea.  I saw a counselor for a few year in my 30's for anxiety and no meds but it did me a great deal of good to have someone to talk to.

Title: Re: I don't care what "they" say ...
Post by: cmclien on September 08, 2010, 06:55:09 AM
P.S. Thats a myth that a low carb high protein diet causes kidney disease.  The truth is that people who already have kidney disease should not be on a low carb high protein diet. 
I read a really good book this year by Jonny Bowden called Living Low Carb that does not advertise any one diet but covers them all and goes into alot of detail about the low carb life.

Its funny, the diet you have mentioned in you're other post is almost identical to the IC diet out there which some think is autoimmune in nature.  I'm all for the low sugar, lower carb diet (less then 15g sugar, 120 or less of carbs a day).  Have been following it with my hubby since last January for health reasons more then for weight reasons though it does help keep the weight off while eating alot more food.
Cindi
Title: Re: I don't care what "they" say ...
Post by: irish on September 08, 2010, 07:39:58 AM
I was just diagnosed with diabetes and had to take 3 classes of learning to live with diabetes as mandated by Medicare and just about evey other insurance company in the US. It was one of the best classes I have had in a long, long time.

One of the things we learned was counting carbs and knowing what foods we could eat. The one more important thing that I learned was that a person needs to eat 130grams of carbohydrates every day just to keep our brain up and running.This means that the energy needed is used to maintain all our bodily functions such as temp control, blood pressure, etc which are contolled by the base of the brain. The brain also uses carbs to maintain the energy to keeps those chemicals up to snuff which in turn makes us able to think, reason, etc and everything else that we are able to do.

That is why people with low blood sugar get confused, mean, belligerent, unable to make decisions and problem solve. If we eat too little carbs we are in danger of being a danger to our family. Driving a car with this person is not safe and having them cook on a stove is also a big problem.

All this stuff that is mentioned in this terribly intense diet is something to pay attention to but if you try to adhere to this you may be suicidal and not know it. Of course, the chemicals and preservatives are bad for us, of course too much sugar and carbs are not good for us. Gluten plays a big part in some autoimmune disease as it can't be eaten by people who have Celiac Sprud. My hubby has been diagnosed with this and I have cooked gluten free at our house for over 30 years.

Some people can't eat dairy as they are either allergic or lactose intolerant. When people get so hung up a a huge diet that eliminates practically all the food groups that we need to sustain life it gives one pause. Why is this person so "far out" in their thinking about their diet?? If they are trying to cook for a family it could be that the the rest of the family are being literally starved. One can't eat high protein diets and get by with it for olong because it will eventually take its toll on the kidneys---first it takes its toll on the liver because if you don't eat enough carbs the liver has to pull the energy out of the protein, fat, etc and really hard on the body as far as all organs are concerned.

If there are not enough fats taken it our body will eventually pull the fat out of the liver and if this goes on too long it can become unhealthy. We need fat to lubricate our eyeballs, our intestines, all the organs, etc. We need fat and water to help keeps us up and running. We will dry out without fat. Our hair will turn absolutely brittle and our skin will crack. Not only that we need fat to help us metabolize the fat soluable vitamins that are absorbed in the small intestine.

I would like to see the exact article that that diet came from as I find it too far out to be tried and true. It is your choice, Liz, if you want to live like that but I am concerned about how you assess your "side effects". Thank you and good luck.  Irish
Title: Re: I don't care what "they" say ...
Post by: puccini914 on September 08, 2010, 07:45:03 AM
By the way, check out my diet post.  I'm trying to find stuff that people with sore tummys can eat and then we're going to try to come up with recipies to make them yummy.  Come join us.


Sorry Scottie, went too far. My apologies. I edited out a legthy inappropriate Religious monolougue. Sorry.   Anyway, as far as the diet issues go I'm trying to help people come up with ways to alter recipies to make them more tolerable, I welcome any and all suggestions.  Jenn
Title: Re: I don't care what "they" say ...
Post by: Scottietottie on September 08, 2010, 08:55:10 AM
Hello

Please can I remind everyone that religion is one of the topics not to be discussed on these boards. Politics is another. Both are too contentious.

Thanks - Scottie
Title: Re: I don't care what "they" say ...
Post by: LizPetillo on September 08, 2010, 09:02:21 AM
Its almost like a new thread needs to be started here but Liz have you been tested for celiac?  Is that why you have malabsorption?... maybe talking to a counselor would help
I don't have Celiac.  Been there .. tested for it ... don't have it.  I noticed that when I ate bread or pasta that everything got a whole lot worse.  I asked around.  Drs. looked at me like I was from Mars.  Then the Sjogrens Foundation put out the info about anti-inflammatory diet and how many Sjogrens people suffer when they eat bread or pasta because of the Sjogrens.  

Counselor?  No.  I have a degree in psychology and recognize the 5 stages of grief.  I did the 'shock'.  I did the 'bargaining'.  I did the sadness.  I'm in anger.  Gotta' let it burn out on it's own.   To fake it and stifle it isn't healty.  Just let it burn out.  

Faking happy or talking doesn't take away the truth of the situation.  Just gotta' let the anger burn out.
Title: Re: I don't care what "they" say ...
Post by: Scottietottie on September 08, 2010, 09:10:03 AM
I think you are absolutely right about the anger. Everyone gets through in their own time. It can't be rushed.
Title: Re: I don't care what "they" say ...
Post by: puccini914 on September 08, 2010, 09:10:21 AM
Liz, just don't let it burn you out.  Sometimes we hold on to anger too long.  I've done that with DH on a few issues, big mistake.  I get angry about being sick, especially when it comes to taking my kids outside.  People keep telling me it's okay, just do it, but they really have no idea the degree of my sun sensitivity which has now been hightened by the methotrexate.  I am actually limited to from the car to inside and that's it.  It really stinks for the kids and breaks my heart.
Title: Re: I don't care what "they" say ...
Post by: syng4hym on September 08, 2010, 09:53:25 AM
I think this disease is a nasty one... it takes away everything that you enjoyed.  I used to love to walk 3 miles a day, but now, that's not possible.  So sad.  Eight years ago I didn't take one medicine or go to the doctor, now I go to atleast 3 specialists a month (at $35 a pop) and my regular doc once ($20), plus my 12 different meds a day...  I'm broke just from medical expenses.  Sad. 
Title: Re: I don't care what "they" say ...
Post by: puccini914 on September 08, 2010, 10:09:41 AM
The whole reason I even applied for SSI  3 years ago was because I knew the medical bills from whatever this disease was would become a seriuos burden on my family.  We've always struggled finacially, just scrapping by never bothered me, but this illness would surely cripple us.  I guess we were lucky that our income was so low we could qualify for Medicaid, but SSI was just approved, and whenever the final letters come through and the payments start our new income will actually put us over the limit to recieve low income Medicaid.  Funny how that works, Huh?  At leaset the kids will be covered under GA Peach Care and I'll automatically still get Medicaid through SSI, the only one outta luck will be DH.  He running around to doctors getting as much done as possible before all his coverage runs out.  What a world we live in.
Title: Re: I don't care what "they" say ...
Post by: inga on September 08, 2010, 11:00:10 AM
Hubby wants to retire, when he does, it takes 50% of our monthly income to pay the premium for health insurance.  We are middle class.  I dunno what is out there to help people like us.  I guess we will go without, which is something we are discussing....just throwing it all to the wind.
Title: Re: I don't care what "they" say ...
Post by: navydad on September 08, 2010, 11:23:55 AM
Now that I have (retired),, I was fortunate to get SSDI on the first try,, I was only in the union for the last 14 years that I worked,, and the way that worked was my employer had to put so many dollars into the trust fund for every hour I worked,, I had worked tons of overtime but since I retired early at 55,, I took a 30% cut in my pension,, along with my wifes income were not doing bad till you add in COBRA for me,, and insurance for her,,, and its over a 1000 a month,,, and her insurance has a 5000 deductible,, add in mortgage and everything else,, its not a lot left,, but with my health the way it is,, its not like i;m out blowing anymoney,, everything sucks
Title: Re: I don't care what "they" say ...
Post by: navydad on September 08, 2010, 11:33:08 AM
Hello

Please can I remind everyone that religion is one of the topics not to be discussed on these boards. Politics is another. Both are too contentious.

Thanks - Scottie
Whoops
Title: Re: I don't care what "they" say ...
Post by: puccini914 on September 08, 2010, 01:29:10 PM
Quote
Hello

Please can I remind everyone that religion is one of the topics not to be discussed on these boards. Politics is another. Both are too contentious.

Thanks - Scottie

Whoops

That was my bad, and I already took it down.  It was really an interesting thought for anyone who is  or was Catholic, if you're not, it was kinda meaningless. so I just edited it out instead of upseting anyone.  No biggie.
Title: Re: I don't care what "they" say ...
Post by: Scottietottie on September 08, 2010, 05:42:24 PM
Thank you.

It's not that the thread was getting out of hand - but in the past - some have - so thanks.   :)
Title: Re: I don't care what "they" say ...
Post by: inga on September 08, 2010, 06:40:04 PM
I sometimes feel like I have 3 butts to be kicked in.  Just born lucky I guess.