Hardest things I just discovered living with this xxxxx disease

[Lou]

[Sjogren's World staff has edited this post. I know you are frustrated, but we do not allow profanity on our boards. Please choose different, non offensive words, we will still understand what you want to say]

Hello everybody:

This year, after more than 8 years I have been diagnosed of this xxxxx (sorry, I need to let free some of my internal pression [no, not in here, no profanity]), I learned based on deceptions of most of the people (family and not family) and the circunstances of my personal life some hardly thrues.

Here is the list:

1. Noboby matters me or you have a rare, chronical and incapacitating disease (parents, aunts, cousins) and this specie almost extinted called "real friends" or similar... the same xxxxx thing.. unless they suffer in their own body.

2. The ONG organization (I am speaking about the country sewer where I live by the moment, aren´t useless and the information that show in their webs are LIARS. For example: the hope phone here in Spain, 24x7.. LIAR!!! Yesterday I called  since 21:00 to 23:00 and all theirs phones are without line...

3.The major of doctors don´t matters about us.. They only matters about they personal account.. The same to pharmaceutical.

4.Suffer a illness like SS Primary or Seconday it´s different, not better or worst, than suffer cancer or AIDS.. People think that is a trifle suffering SS because we don´t have a morfine machine with us... This mindset sicks me!!!!

5. I am suffering the worst moment of my hole xxxxx life not only for this shoot... for a lot of situations that I can not control, and it make me think that people who say that "life is a gift" or "life is beautiful" are smoking marihuana all day long..

Living like this, don´t deserve at all...

[Joe S.]

Lou, there is not much I can do to help you from this distance but here are some cyber (((hugs))). In the States we have been fighting for many years to get recognition of auto immune diseases from our doctors and our government.

Like the fight to get doctors to recognize they need to wash their hands, autoclave their instruments, and that bacteria causes infections. They have known about auto immune diseases for over 100 years. How much longer will it take them to find a treatment? While tones are illegal in the Sates, I still use them to help manage my condition. I use many supplements also.

[Lou]

Thanks for your reply Joe S. and for your emotional emphaty.

Spain xxxxx!

Right now, I feel fuious for my personal situation, and more because I feel as I live alone in the middle of the Congo....

Nothing I can do... I try to meet people, to make my parents understand, etc

I have concluded that must exist people with terrible lucky to balance people with a lucky sun and star....

Pd: I appreciate all the suggestion of places to move of this xxxxx country.

[edited by Spring, Sjogren's World]

[angeldancer]

Lou...I understand your battles.  Sometimes I wish I had a husband to at least have someone that could live with me and understand.  I understand your frustration.  Friends are limited but I do have a few.  They may not be able to be here with me but I do know they are thinking about me at least. 

I battle this disease and cancer and let me tell you after what i been through with the chemo and radiation and those crazy side effects  I realized that sjogrens have similarities but at least I am not literally putting poison in my body to kill me off literally anymore.  I am NED but that just made sjogrens madder (if there is a word) and my flares have been relentless.  Just got out of the hospital again because it has messed up my GI track.

Try Joe's tones and move out of Spain.  I can't say that America is better because I have never lived in Spain so I don't know but I know I will change doctors until I find the right one.

Take care,
Angeldancer

[Carolina]

Dearest Lou,

I think we all understand your serious issues.

You have Sjogren's, which can be a very disabling condition, and your family and friends do NOT understand.  Lack of support and understanding from family and friends is a terrible problem for many of us.  And we get stupid advice about diet and exercise.  Some times we are told "you take too many pills" or "just snap out of it".

Many many doctors do not understand.  We have all had horror stories about doctors who tell us we can't have the symptoms we have, and dismiss us.  We fire those doctors, of course.

And there are very few pharmaceutical treatments that can make a BIG difference.  One of the reasons that there are so few effective treatments, and no treatments that can prevent or cure Sjogren's, is that Sjogren's is a disorder of our Immune System.  The Immune System is extraordinarily complex and medical science is working to understand the mechanisms that cause our miseries. 

So what do we DO?   We share our problems, and we offer each other answers that we have found.  We also offer each other support and encouragement.   

Lou, begin keeps a daily diary of your health and symptoms.

Ask us questions, and share your specific concerns.  You would be surprised how many of us have found help here.

I know of no country that offers ideal support for those with Immune Disorders.  And your family and friends are in Spain.

I have found that a positive attitude, while difficult to achieve, affects not only our own life, but our friends, family and our medical professionals.

Welcome to our forum.  You have expressed your frustrations.  Now let us know how to help you.

Hugs,  Elaine

[donnahenry]

What are tones?

[jazzlover]

EXCUSE ME??

We use vulgarity here?

...............................
Note: We do not allow vulgarity here. We ask that everyone choose their words carefully, we will understand you without the vulgarity.
[edited by Spring, Sjogren's World]

[anita]

Jazzlover,

The site used to not even allow profanity to be typed (it would automatically change words like sh*t to shoot and dam* to dang, etc).  I guess no one thought to include the words this poster frequently uses...and have replacements for them.


...............................
Note: We do not allow vulgarity here. We ask that everyone choose their words carefully, we will understand people without the vulgarity.
Looks like we need to double check the filters.
[edited by Spring, Sjogren's World]

[Carolina]

Hi Jazzlover, the 'interesting language' combined with the errors in syntax, grammar and spelling, make for a very colorful but not particularly 'offensive' post.

And part of me wondered for a bit if this was posted by a 'troll'.  But I think not.

And part of assumed that since this isn't a 'first language for "Lou" he doesn't feel the effect of the words he is using.

Lou, if you read this, you would do well to leave out words like fu*ck and tone down the angry nature of your posts.  We know you are angry, and we understand.  But we try to be civil and generally kind to each other.

this is meant kindly!

Hugs,  Elaine

[Kathy57]

Lou,

I'm sorry that you are having such a terrible time.  My advice?  Try not to give up hope.  Seek out others who believe you and bring the best out of you.  Try to avoid the opposite. 

It is not unusual at all to feel depressed, angry, or hopeless with this illness.  I think we've all been there!  Things will get better.  Try to focus on what HELPS you.  For instance there really is a lot of good advice here regarding meds, supplements, and alternative treatments.  Not all of them will work for you but I bet some of them will.

It will require patience, and trial and error.  For instance if your mouth is horribly dry, have you tried Ubiquinol?  It is a supplement that was suggested here.  It has helped me and many others but for some it has not worked as well.

I learned about better ways to take my meds here.  You will find support here, but please don't give up.  There will be better days ahead.

Kathy

[warmwaters]

Like others, let me offer some hugs and a giant rubber ball that you can hit as much as you need!

Because even those of us who try to stay positive have days when we're sad or angry.   

Sounds like you are going through something tough. Once you get through that, which may take a while, see if there's anything you can change about your situation. Maybe you've got a bad doctor, you could try a different one.  Or maybe focus on the one friend who does care, and not the people who aren't helpful.  I don't know which parts you can control, just looking for options when you can.

Feel free to share more about what's happening. We've all got some crazy stories.

[Lou]

Hello again.
I want to clear some points Carolina and Anita any other user who can have any doubt of my intentions:

1. I am NOT a troll. I am a SS sick woman.
2. I am living maybe the most terrible moment in my whole life.  Please, don´t be so close-mind for a couple of words. I think this is not a religious web and these words are to reduce my interior pressure of all the indeseable circunnstances I have to live appart this dissease.
3.Joe S. has changed some post with me months ago. If you have free time.. you can check it..
4. I am puzzled for a few words that I written.. Carolina.. don´t you think that it is a better idea to read unless 10 times the post and then, if you have any doubt, ask to the user (me) who posted?
5. I LOVE to say swear words. For your information, an BBC article explain the benefits of this practice. I attach the linkspecially for you.. http://www.bbc.com/future/story/20160303-the-surprising-benefits-of-swearing 

 
Please, read more and use your brain for more things... We are adults and I for your information, I think not the users are so belivers and this [deleted] things..

...............................
Note: We do not allow profanity here. We ask that everyone choose their words carefully, we will understand you without the profanity. Please calm yourself with this method somewhere else, or change your words.
[edited by Spring, Sjogren's World]

[Lou]

This post is to express my grateful for your post.

I also have irritable colon that the last weekeng began again to hurt with a terrible pain. I can´t eat, If I drive in a street with paving stone, it hurts a too much...
I have living parents but the real thing is that they punish me because I have my own ideas, and I am not let them to be her puppet. I am not a person who follow the "sheep", and they are angry with me for that.
They don´t help me with anything emotional o taking care some times of me, the feel free of everything for a couple of bills. I think that is not a parent.
Today I try, with the help of the psychologist, to get an accord, a middle point. My mother didin´t want it.. It was really and terrible sad for me.. I really realize I am COMPLETELY ALONE... It hurts  more than the ... disease...

Could you please tell me how I see the life with in a positive way, because I couldn´t.

Friends=0

Hope all you have better cards in this hand...

[irish]

I am going to say some things that you may not like, but here goes. In this life we all get a lot of junk that makes us miserable and unhappy. Not everyone care what happens to us nor do they seem to think about anyone but themselves. We are all given a set of circumstances to deal with and it can be very hard at times.

It took me 40 years to get diagnosed. I have not had a social life for years due to my health. I am in the process of losing the hearing in my hearing ear. I am totally deaf in the other ear from autoimmune disease. I am getting treatments in hopes of saving my hearing. I could go on and on about my trials but everyone on here knows them pretty much---and everyone else has their trials also.

Anger is part of the process we go through when trying to cope with illness. It is normal to grieve. It is not, however, always beneficial to our well being to hold tight to our anger and unacceptance of our illness. We all have to learn to accept and go on with our life. LIfe is tough, but if we reach down deep in our soul we can find the strength to go on and make do with what life has allowed to happen to us.

Most of us have family who don't get it. My husband died a couple of years ago and he knew, but my 3 kids don't get it at all. No one gets it until they have suffered. We need to have mercy for others cause they will suffer before they leave this earth---only they don't believe that they will. We who suffer now know that most people will have some burden before their life ends.

So, I hope that you can find the peace and acceptance of your health status. It will make your life much better and you might even feel better. Pain and suffering will make your spirit grow and you will be a better person for it. I am sorry that you are suffering and hope that things will improve. Hugs. Irish

[Jenny]

Very well said Irish.