Author Topic: I don't care what "they" say ...  (Read 20687 times)

LizPetillo

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I don't care what "they" say ...
« 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.

Scottietottie

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Re: I don't care what "they" say ...
« Reply #1 on: September 03, 2010, 05:57:45 AM »
Life is fatal.
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

Seeker

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Re: I don't care what "they" say ...
« Reply #2 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.

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navydad

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Re: I don't care what "they" say ...
« Reply #3 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,,

LizPetillo

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Re: I don't care what "they" say ...
« Reply #4 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. 


LizPetillo

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Re: I don't care what "they" say ...
« Reply #5 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 ....

navydad

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Re: I don't care what "they" say ...
« Reply #6 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,,,

inga

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Re: I don't care what "they" say ...
« Reply #7 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?

navydad

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Re: I don't care what "they" say ...
« Reply #8 on: September 03, 2010, 10:16:27 AM »
The break room?

inga

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Re: I don't care what "they" say ...
« Reply #9 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.


LizPetillo

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Re: I don't care what "they" say ...
« Reply #10 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.    :-[

Seeker

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Re: I don't care what "they" say ...
« Reply #11 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.

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Every day is an adventure, waiting to happen.

magistramarla

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Re: I don't care what "they" say ...
« Reply #12 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

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Re: I don't care what "they" say ...
« Reply #13 on: September 03, 2010, 11:30:34 AM »
Happy Birthday Marla.  Many happy returns.

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navydad

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Re: I don't care what "they" say ...
« Reply #14 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,,,