Author Topic: Crap is what it is!  (Read 18098 times)

shevonne

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Crap is what it is!
« on: August 30, 2010, 05:14:26 PM »
I went to my GP today for a followup and I just wanted to get her opinion about this Sjogren's crap so I asked her if she thinks Im a time bomb waiting to happen.  (I was basically asking her if she thinks as time goes on I will get really bad with this disease).  She just looked at me and said "just try to take care of yourself the best way you can."  I was already thinking that I would get worse as time goes by and she just confirmed it for me.  Im going to enjoy what I can while I can and the heck with anybody's stress they want to hand out.  I got my own.  heck why don't I just have a freakin Sjogren's party; yeah celebrate this crap!  Oh I guess Im really freakin venting right now!  I keep telling myself that Im just having a moment and this too shall pass; somebody help to get me back to where I need to be because right now I feel like screaming!  I dont want anyone else in my family to get this or have this but I keep wondering why Im the only one with it!  I dont have anyone to talk to about this at home because I dont want to sound like a complainer, I dont want anyone feeling sorry for me, I want them to know that I am strong and I can handle this!  Can I?  Why am I freakin out lately when its been months now since my diagnosis?

tangowhiskie

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Re: Crap is what it is!
« Reply #1 on: August 30, 2010, 05:21:55 PM »
I think it's very natural to think about how the disease might progress.  The world of AI is a scary one - especially when they are diseases that come from an unknown cause, have no cure, and are still not understood very well.  I think the most important thing is to follow your doctor's instructions, like taking all the prescribed medications, and like she said - taking care of yourself.  I also think it's important to listen to your body, and pay attention to any changes... and talk to you doctor about them.

Keep your chin up :)

Rob_MI

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Re: Crap is what it is!
« Reply #2 on: August 30, 2010, 07:45:32 PM »
I swear, my pSS is pretty aggressive....at least thats what I think all my recent problems are from.  It scares the dickens outta me.   I already have 7 docs appts in Sept.  And thats gonna grow.  Been on plaq 2 months...hoping that will do something for me but not keeping my fingers crossed.  A few nights now I've taken a few nips of vodka to help me forget.  Nights are the worst for me...in bed, waking up and my arms feel like they're vibrating slightly and tingleling arms and legs.

Yeah Shevonne, Sjogrens is crap thats for sure.  And usually you don't get just 1 AI problem....it has many relatives who visit you too.

Hey, take care the best ya can.  Thats all we can do!

eyeamdry

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Re: Crap is what it is!
« Reply #3 on: August 30, 2010, 09:19:48 PM »
You folks try not to freak out over Sjogrens.  There is certainly worse things that can happen to you.  I was dx with Sjogrens and 6 MONTHS later, I was diagnosed with breast cancer and skin cancer squamous cell.  Four days apart.  I was just settling in with the SJS diagnosis and getting some relief from the medicine and wham--.  "Well, ma'am, you'll be having surgery and radiation and you will probaby be ok.  Three years later, I seem to be cancer-free.  If I could loose one of the diseases though, it would be the cancer dx because you're always expecting it to come back.

I'm not the only one on here that has had cancer and I won't be the last.  There seems to have been an unusual amount of people who are dastardly afraid.  I wonder if there is something that's been printed recently that is scaring people.  Mostly, it's hard to find out information and medical people who know what Sjogrens is. 

irish

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Re: Crap is what it is!
« Reply #4 on: August 30, 2010, 09:51:30 PM »
I'm going to line up behind Lucy in this matter. I don't know if it is the heat this summer, but people have been unusually upset about things.

Lucy and I are from the generation where people got sick all the time and mostly they ended up in tough shape with no medical relief or they ended up dying. We were all in the same boat. WE could all get sick anytime and bite the bullet.

Modern medicine came along and now it seems that we think we should be instantly cured of every ache and pain and everyone is asking "what did I do to deserve this?". The answer is that medicine knows a lot but instant cures are not possible most of the time. Much of the time it is just relieving some of the misery. Do we deserve this??? All I know is we are born into the human race and it comes with the territory---period.

The thing that is almost worse than the diseases is the financial woes that come with illness. Now that is unfair. Trying to find the money to live plus take care of the diseases, the pain, etc, is enough to wear down the strongest person in the world.

I'm sure there are many of you who think that I am very uncaring and rude, but this is the way most of us "oldies, but goodies" were brought up. When we went to work and got sick at work we just bit the bullet and stayed the course. In my profession there was no one to replace me during my shift so if I wasn't throwing up in the halls and living in the bathroom I just had to stick it out. We didin't have all the sick days, etc years ago and our need for money was very great.

I am not saying that folks here are looking for a free ride at all. I am just stating that societies perception of illness has changed over the years. And---society's perception of life in general has changed over the years and not all of it is good. All of us, and I mean all of us, thnk that we are entitled and it comes from living in a society that pretty much had more than enough money for a good number of years.When I was growing up we were all the same-we were poor and we didn't expect much of anything from anybody.

I guess I have been sick so long that I don't know any other way to be. The one thing I do know is that anger has it's place in dealing with a loss, but we all have to decide what we are going to do with that anger. If we hold it close to our chest we will miss a lot that is going on in life. As time progresses I would hope that in spite of our aches, pains, infirmities and the total unfairness of life that we might all be able to accept what has transpired. Doesn't mean we like it or deserve it but it frees our spirit so that we can take part in the joys that are still out there.

I am sure that many of you will be very upset with me over this. I am not picking on any one person. I am remarking about how many people we have had lately that are extremely angry. I have been on this site close to 6 years and  people's anger seemed less intense years ago. Like I said, the heat, the economy, etc. Everything impacts how we feel. Feel free to speak up, or out or against my opinion. Irish ;D

eyeamdry

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Re: Crap is what it is!
« Reply #5 on: August 30, 2010, 10:23:54 PM »
Hi Irish-
I'm glad you wrote because I had no way of knowing you felt the same way.  I am on another board or two and the past couple of years (some) people are just beside themselves with anger.  People who are well into adulthood are referring to themselves as "girls" or "boys".  I'm sorry but someone who is late 20's or in the 30's is not a girl.  This post isn't to make anyone mad either.

Rather it's the opposite.  Anger is really hardest on the person carrying the anger.  It only adds more stress on our shoulders.  I can't think of anyone to blame for my SJS.  Now, my daughter has Type I diabetees and she could blame me for passing down the autoimmune thing.  She has never mentioned it. 

I had to retire early because of the fact of my eyes being so dry and my vision declining.  It was not the way I wanted to retire.  But, who should I blame?
Please people, be easy on yourselves.  Especially the younger folks because you'll have to live with yourself for a long time.  Best to all.  Lucy

shevonne

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Re: Crap is what it is!
« Reply #6 on: August 31, 2010, 02:37:33 AM »
Well its like I said "and this too shall pass."  I understand what you are saying Irish and eyeamdry and maybe I will get to where you are.  Matter of fact I can relate to what you are saying when I think of my family because I dont want to be a burden to them.  Yes, cancer is a bad thing and that runs in my family also, on both sides!  I keep looking out for that also; had two sisters with breast cancer and brother with bladder cancer.  I have went through it along with them.  When a loving family member has cancer and you have a family like I have you go through it with them.  No, you are not making me angry and I am not trying to make you angry.  However, everyone has their moments and Im trying to get use to this crap and yes it is crap.  I am venting and I thought I could vent here as some members has told me.  I think everything has a process; right now I am going through the process with all different levels.  I dont know exactly what level I am at but Im sure I will come through because I am a fighter.  I thought everyone goes through this when they find out health issues as such. I guess Im different.  Who knows; when this moment passes; who knows if it will come back again but I was told that I can vent here and hopefully some of the members help me get back on track.  Hopefully, I will learn to deal with this, get back on track and be able to help some new members that are going through the process!

LizPetillo

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Re: Crap is what it is!
« Reply #7 on: August 31, 2010, 03:28:02 AM »
Angery is natural.  It's part of the 5 stages of grief.  Let it rip .. be angry.  I sure am. 

As far as the 'this too shall pass' ... I get people telling me that all the time. 
But the fact is Sjogrens doesn't pass.  There is no cure.   It'll only get worse.
And the doctors are, for the most part, idiots when it comes to this disease.

So yep .. be angry.   

shevonne

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Re: Crap is what it is!
« Reply #8 on: August 31, 2010, 03:39:32 AM »
When I say "this too shall pass" I mean my attitude not this crap!  I mean I will learn how to deal with it but I have to go through the process like anyone else.  Thank you for understanding!

SLEEPY101

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Re: Crap is what it is!
« Reply #9 on: August 31, 2010, 04:00:54 AM »
Shevone,
  You are not alone,vent away. Chronic pain can really take it's toll. It can really control someone's life. People on this site have different level of Sjogren's. So some have very little pain and symptoms and others like me have level 10 pain(like labor) and many life altering symptoms. You do get used to the pain and being sick all the time.

It is very frustrating when Dr's act like you are doomed and act like things are hopless for you. I had a GP be also tell me that things are going to get worse for me and the eventually that I would be in a wheelchair. That was hard to hear but that is only one person's opinion. I have to have faith that is not going to happen. I have to have faith that I will be healed and be better some day. I had a Dr laugh at me once when I said that. But hey whatever keeps you going. We just have to keep plugging away and handle what life dishes out.

LizPetillo

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Re: Crap is what it is!
« Reply #10 on: August 31, 2010, 04:41:28 AM »
When I say "this too shall pass" I mean my attitude not this crap!  I mean I will learn how to deal with it but I have to go through the process like anyone else.  Thank you for understanding! 
I should have been more clear .... I wasn't referring to you.  I was referring to the people here around me who keep saying that the disease will pass and everything will be fine when they find a cure.   That's hogwash.  And they get upset because I don't have the same pollyanna attitude that they have.

NOT YOU.  You've got a handle on it and know the score. 

navydad

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Re: Crap is what it is!
« Reply #11 on: August 31, 2010, 05:09:07 AM »
All I know is I hate it,, I;m getting sicker and am just told to go to a pain clinic,,, I swear I;m on earth and there on mars,,, I basically almost crawl around,,, 70 degrees and I;m dressed like its winter,,, Liz,,horrible what the GP told you,,, and I;m sick of reading the literature that says this is nothing more then dry eyes and dry mouth,,, I would happy to have just that,,,

SLEEPY101

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Re: Crap is what it is!
« Reply #12 on: August 31, 2010, 05:16:49 AM »
@ Navydad I hope the pain clinic can help. I was going to start an extensive program then my insurance changed and they did not cover the clinc. I was going to have to spend 8hrs per week at the clinc and was going to spend about $150 of copay per week. I was also going to have to join a group pain therapy group. I felt a little out of place since I am in my 30s and all the other women were in thier 70s,80s and had walkers

The Dr's have said it is almost inpossible for me to have so my symptoms. What do I have to gain by making up symptoms? I would glady give my symptoms away it I could.

kerryadelfred

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Re: Crap is what it is!
« Reply #13 on: August 31, 2010, 05:17:18 AM »
hiii

i m new in this forums and i just need a help in it
and i wish that this site will response me well,,,

« Last Edit: August 31, 2010, 05:45:00 AM by Linda196 »

navydad

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Re: Crap is what it is!
« Reply #14 on: August 31, 2010, 05:19:56 AM »
@ Navydad I hope the pain clinic can help. I was going to start an extensive program then my insurance changed and they did not cover the clinc. I was going to have to spend 8hrs per week at the clinc and was going to spend about $150 of copay per week. I was also going to have to join a group pain therapy group. I felt a little out of place since I am in my 30s and all the other women were in thier 70s,80s and had walkers

The Dr's have said it is almost inpossible for me to have so my symptoms. What do I have to gain by making up symptoms? I would glady give my symptoms away it I could.
same here,, what possibly gain from so many symptoms,,, they can shove tehre Dx of Fibro,,, Fibro cannot be this bad,, there is no possible way anything could be this bad and to clal it fibro,,,