Re: More on Auto Immune

Noel7 · ‎03-09-2010

@haddon9 wrote:
@Noel7 I agree with you.. For some reason many really don't understand the seriousness of some autoimmune illnesses and make inappropiate comments. When my husband first came down with his rare illness I had a friend say to me..."ask least it's not cancer"..Excuse me? He almost died from his illness and though he's better now than back in 2012 when he first got really sick it is a daily struggle and I never know if he will go backwards again or even submit to the horrible disease!

This illness has become a part of our daily lives...it's NOT fun!

@haddon9

Thank you for responding. For many, AI is a daily struggle, as you have described with your husband. I'm glad to hear he's doing a little better now, I hope it gets even better for him.

I hope you're doing ok, I know how difficult it is to be a caretaker. Take care.

Noel7 · ‎03-09-2010

@Trinity11 wrote:
@Noel7 wrote:
@Iluvlucy

Hello! It's good to hear from you again 😊

Your disorder sounds a lot like Lupus, attacking body organs and joints, I know how terrible that is for you, and how much worse it is as a mother to see your son suffering. My husband or daughter also stays with me when I am in the shower during a flare.

You've taken the time to explain what you and your son are going through and I understand. You are an incredibly brave woman, and your son is also brave.

I also have an issue with my throat closing. I've come close to not surviving a cold twice. The first time was a serious asthma attack and pneumonia as a reaction. The second time was an ER trip with my throat shutting down... terrifying. My MD team tells me to stay away from cold and flu germs, but then we are called names like "germaphobes" and ridiculed by people who have no clue what they are talking about. I cannot believe the ignorance and cruelty.

So good to hear from you, I wish you and your son the very best.

Noel

@Noel7....Good Morning. Yes, that germaphobe thread I wrote a long response to and thought what the heck.. the OP was in denial and that was her middle finger to all of us who need to be more vigilant. Then the responses that followed made me just not post. You cannot change the mind of people like that. They are ignorant.

@Trinity11

Thank you. Just thank you. That's exactly how I saw it, also. I was surprised by several people who joined in to call names.

I am not easily hurt, but I was hurt by that incredible lack of compassion and the ignorance behind it. I felt that for all of us who do our best to survive.

Trinity11 · ‎11-16-2014

@Noel7 wrote:
@Trinity11 wrote:
@Noel7 wrote:
@Iluvlucy

Hello! It's good to hear from you again 😊

Your disorder sounds a lot like Lupus, attacking body organs and joints, I know how terrible that is for you, and how much worse it is as a mother to see your son suffering. My husband or daughter also stays with me when I am in the shower during a flare.

You've taken the time to explain what you and your son are going through and I understand. You are an incredibly brave woman, and your son is also brave.

I also have an issue with my throat closing. I've come close to not surviving a cold twice. The first time was a serious asthma attack and pneumonia as a reaction. The second time was an ER trip with my throat shutting down... terrifying. My MD team tells me to stay away from cold and flu germs, but then we are called names like "germaphobes" and ridiculed by people who have no clue what they are talking about. I cannot believe the ignorance and cruelty.

So good to hear from you, I wish you and your son the very best.

Noel

@Noel7....Good Morning. Yes, that germaphobe thread I wrote a long response to and thought what the heck.. the OP was in denial and that was her middle finger to all of us who need to be more vigilant. Then the responses that followed made me just not post. You cannot change the mind of people like that. They are ignorant.
@Trinity11

Thank you. Just thank you. That's exactly how I saw it, also. I was surprised by several people who joined in to call names.

I am not easily hurt, but I was hurt by that incredible lack of compassion and the ignorance behind it. I felt that for all of us who do our best to survive.

@Noel7....there are people who really cannot adjust to their illness and the poster who started that thread was just venting because she clearly had no intention of doing what someone should be doing that had her disease.

The responses that followed were clearly from people who don't have a clue. I also was surprised at who responded with such a remarkable lack of compassion. It told me all I need to know about them. Just a little surprised, though.

Noel7 · ‎03-09-2010

@Trinity11 wrote:
@Noel7 wrote:
@Trinity11 wrote:
@Noel7 wrote:
@Iluvlucy

Hello! It's good to hear from you again 😊

Your disorder sounds a lot like Lupus, attacking body organs and joints, I know how terrible that is for you, and how much worse it is as a mother to see your son suffering. My husband or daughter also stays with me when I am in the shower during a flare.

You've taken the time to explain what you and your son are going through and I understand. You are an incredibly brave woman, and your son is also brave.

I also have an issue with my throat closing. I've come close to not surviving a cold twice. The first time was a serious asthma attack and pneumonia as a reaction. The second time was an ER trip with my throat shutting down... terrifying. My MD team tells me to stay away from cold and flu germs, but then we are called names like "germaphobes" and ridiculed by people who have no clue what they are talking about. I cannot believe the ignorance and cruelty.

So good to hear from you, I wish you and your son the very best.

Noel

@Noel7....Good Morning. Yes, that germaphobe thread I wrote a long response to and thought what the heck.. the OP was in denial and that was her middle finger to all of us who need to be more vigilant. Then the responses that followed made me just not post. You cannot change the mind of people like that. They are ignorant.
@Trinity11

Thank you. Just thank you. That's exactly how I saw it, also. I was surprised by several people who joined in to call names.

I am not easily hurt, but I was hurt by that incredible lack of compassion and the ignorance behind it. I felt that for all of us who do our best to survive.
@Noel7....there are people who really cannot adjust to their illness and the poster who started that thread was just venting because she clearly had no intention of doing what someone should be doing that had her disease.

The responses that followed were clearly from people who don't have a clue. I also was surprised at who responded with such a remarkable lack of compassion. It told me all I need to know about them. Just a little surprised, though.

@Trinity11

I was surprised, too. Shocked, was more like it. I didn't know you had seen it, it couldn't have been pleasant to read, it sure wasn't for me.

♥️

Trinity11 · ‎11-16-2014

@Noel7 wrote:
@Trinity11 wrote:
@Noel7 wrote:
@Trinity11 wrote:
@Noel7 wrote:
@Iluvlucy

Hello! It's good to hear from you again 😊

Your disorder sounds a lot like Lupus, attacking body organs and joints, I know how terrible that is for you, and how much worse it is as a mother to see your son suffering. My husband or daughter also stays with me when I am in the shower during a flare.

You've taken the time to explain what you and your son are going through and I understand. You are an incredibly brave woman, and your son is also brave.

I also have an issue with my throat closing. I've come close to not surviving a cold twice. The first time was a serious asthma attack and pneumonia as a reaction. The second time was an ER trip with my throat shutting down... terrifying. My MD team tells me to stay away from cold and flu germs, but then we are called names like "germaphobes" and ridiculed by people who have no clue what they are talking about. I cannot believe the ignorance and cruelty.

So good to hear from you, I wish you and your son the very best.

Noel

@Noel7....Good Morning. Yes, that germaphobe thread I wrote a long response to and thought what the heck.. the OP was in denial and that was her middle finger to all of us who need to be more vigilant. Then the responses that followed made me just not post. You cannot change the mind of people like that. They are ignorant.
@Trinity11

Thank you. Just thank you. That's exactly how I saw it, also. I was surprised by several people who joined in to call names.

I am not easily hurt, but I was hurt by that incredible lack of compassion and the ignorance behind it. I felt that for all of us who do our best to survive.
@Noel7....there are people who really cannot adjust to their illness and the poster who started that thread was just venting because she clearly had no intention of doing what someone should be doing that had her disease.

The responses that followed were clearly from people who don't have a clue. I also was surprised at who responded with such a remarkable lack of compassion. It told me all I need to know about them. Just a little surprised, though.
@Trinity11

I was surprised, too. Shocked, was more like it. I didn't know you had seen it, it couldn't have been pleasant to read, it sure wasn't for me.

♥️

It proved to me that there are people who have high levels of education yet know very little about medical issues that do not affect them. They think that if you exercise, eat healthy and wash your hands, you will stay healthy. Anyone who takes extra care in avoiding germs is a germaphobe.

I have seen those bi-annual threads appear here. They always seem to result in the same kind of hurtful responses. This time I figure, why even bother. Ignorance is bliss.

Noel7 · ‎03-09-2010

@Trinity11 wrote:
@Noel7 wrote:
@Trinity11 wrote:
@Noel7 wrote:
@Trinity11 wrote:
@Noel7 wrote:
@Iluvlucy

Hello! It's good to hear from you again 😊

Your disorder sounds a lot like Lupus, attacking body organs and joints, I know how terrible that is for you, and how much worse it is as a mother to see your son suffering. My husband or daughter also stays with me when I am in the shower during a flare.

You've taken the time to explain what you and your son are going through and I understand. You are an incredibly brave woman, and your son is also brave.

I also have an issue with my throat closing. I've come close to not surviving a cold twice. The first time was a serious asthma attack and pneumonia as a reaction. The second time was an ER trip with my throat shutting down... terrifying. My MD team tells me to stay away from cold and flu germs, but then we are called names like "germaphobes" and ridiculed by people who have no clue what they are talking about. I cannot believe the ignorance and cruelty.

So good to hear from you, I wish you and your son the very best.

Noel

@Noel7....Good Morning. Yes, that germaphobe thread I wrote a long response to and thought what the heck.. the OP was in denial and that was her middle finger to all of us who need to be more vigilant. Then the responses that followed made me just not post. You cannot change the mind of people like that. They are ignorant.
@Trinity11

Thank you. Just thank you. That's exactly how I saw it, also. I was surprised by several people who joined in to call names.

I am not easily hurt, but I was hurt by that incredible lack of compassion and the ignorance behind it. I felt that for all of us who do our best to survive.
@Noel7....there are people who really cannot adjust to their illness and the poster who started that thread was just venting because she clearly had no intention of doing what someone should be doing that had her disease.

The responses that followed were clearly from people who don't have a clue. I also was surprised at who responded with such a remarkable lack of compassion. It told me all I need to know about them. Just a little surprised, though.
@Trinity11

I was surprised, too. Shocked, was more like it. I didn't know you had seen it, it couldn't have been pleasant to read, it sure wasn't for me.

♥️
It proved to me that there are people who have high levels of education yet know very little about medical issues that do not affect them. They think that if you exercise, eat healthy and wash your hands, you will stay healthy. Anyone who takes extra care in avoiding germs is a germaphobe.

I have seen those bi-annual threads appear here. They always seem to result in the same kind of hurtful responses. This time I figure, why even bother. Ignorance is bliss.

Yes, and the fallacy that exposing yourself to bacteria and viruses will make you stronger if you have AI. They must have got that one out of an old fortune cookie.

@Trinity11

JaneMarple · ‎05-23-2011

Good morning @Noel7, after you started this thread yesterday I've been thinking about everyone who has posted as well as myself. People who don't suffer from one of these illnesses have no idea what goes on with us and I'm still shocked by the insensitive posts.

You Don't Own Me- Leslie Gore
(You don't Know) How Glad I Am- Nancy Wilson

SilleeMee · ‎05-22-2016

I have scleroderma, since '02. I think some of you know this because I have mentioned it several times.

I'm coming here today because I think something recent has changed with my immune system. All of my life, as far back as I can remember, I have gotten cold sores (herpes). But my outbreaks have been few and far between. However, for the last few months I have not lived a single day without an outbreak! I'm fed up! I'm miserable! I am on the brink of going to my doc to have her give me a RX for anti-viral med. I really don't want to take it, I hate taking anything. But if this is the last thing to do then it's going to be done. I wish I knew what is causing my outbreaks. UUUGGGHH! I will probably have to be on this anti-viral for the rest of my life....yuck.

Sorry, I had to vent.

redwingsgal · ‎03-10-2010

@Annabellethecat66 wrote:
I'd rather think most people just don't understand much about it. There are more than one diseases that fall under this category.

I have something called IGG. I know a few other's who have this. I periodically have to get infusions that take between 6 to 8 hours. For me it's usually 8 hours because my blood pressure goes up.

My middle daughter has Crohn's Disease. She used to suffer terribly with it. In the past few years she's been doing OK. She's just learned what sets it off and tries to avoid those things. However, she's going through a difficult time in her life right now (stress) and that is her enemy.

Anyway, take care and I hope you feel better.

I also have IGG, @Annabellethecat66! My infusions are every 4 wks and they take me 5 to 6 hrs. I have to pre medicate and usually wake up the next day with my head over the toilet vomitting even though I pre medicate. I get so tired on that 4th week each month, and nauseaus for the weekend post IV.. People think I enjoy it, because I get the day off work.

I would much rather be at work than at a doctor's office with a needle in my vein for 6 hrs

Nobody knows what others are going through.

Good thread, @Noel7

God Bless

I may not agree with what you say, but I will defend, til death, your right to say it