Friends don't understand that things are not going to improve

[Guest guest]

Please indulge me in this rant! I have an autoimmune disease in my eyes which I

have had for over ten years. It has been kept under control with severe

immunosuppressive drugs and now I have begun to have serious side effects. I

have been having symptoms of impending retinal detachment in one of my eyes (the

worse one, thank god!) which could lead to blindness. I dont have insurance and

my nada has explicitly said she would not pay for me to see any ophthalmologist

who wasn't in her home town (so that she can get a visit out of it). I have

finally gotten concerned enough to dip into my savings and see someone where I

live (the appt is tomorrow morning). I have tried to talk to one of my friends

about how scared I am that I might lose my vision (I'm only 27, not that being

older would make it better). I am so frustrated with her and the majority of my

friends! She/they always say oh don't worry, it will get better, they will be

able to fix it. She is in the medical field as I am, so I feel like she should

know from direct experience that there are many many diseases that cannot be

cured. I kind of approach my eyes the way I approach nada- it totally sucks and

I feel like it's unfair but I accept that this is something I'm going to have to

deal with for the rest of my life. The worst thing I can hear is to not worry

because it will all just work out. Ugh, thanks for listening.

[Guest guest]

, I am so sorry you are going through this. It sounds really awful.

Since the problem you are having is with an autoimmune disease, I wonder if you

could possibly benefit from seeing a Naturopathic Physician, an N.M.D. It may

vary by state, but typically they are licensed by the state, have the ability to

prescribe medications if necessary, and have a bachelor's degree plus 5 years of

medical school. You would not want to see an N.M.D. if, for example, your arm

was ripped off in an accident. When it comes to things like fibromyalgia or

endometriosis, (autoimmune stuff) they can often be helpful, since their focus

is on healing the whole body, not just trying to stave off symptoms. If there

is an accredited Naturopathic College in your area, they might be able to

suggest a good doctor. Of course, it would cost you some money. This is just

an option I wanted to let you know about.

Deanna

>

> Please indulge me in this rant! I have an autoimmune disease in my eyes which

I have had for over ten years. It has been kept under control with severe

immunosuppressive drugs and now I have begun to have serious side effects. I

have been having symptoms of impending retinal detachment in one of my eyes (the

worse one, thank god!) which could lead to blindness. I dont have insurance and

my nada has explicitly said she would not pay for me to see any ophthalmologist

who wasn't in her home town (so that she can get a visit out of it). I have

finally gotten concerned enough to dip into my savings and see someone where I

live (the appt is tomorrow morning). I have tried to talk to one of my friends

about how scared I am that I might lose my vision (I'm only 27, not that being

older would make it better). I am so frustrated with her and the majority of my

friends! She/they always say oh don't worry, it will get better, they will be

able to fix it. She is in the medical field as I am, so I feel like she should

know from direct experience that there are many many diseases that cannot be

cured. I kind of approach my eyes the way I approach nada- it totally sucks and

I feel like it's unfair but I accept that this is something I'm going to have to

deal with for the rest of my life. The worst thing I can hear is to not worry

because it will all just work out. Ugh, thanks for listening.

>

>

>

[Guest guest]

Dear (((())))

I am so sorry to hear about your eye disease. Coping with it and facing the

possibility of blindness is difficult enough. Having to deal with a nada and

hearing cavalier words from friends would certainly make almost unbearable.

When you feel up to it, when you have enough emotional strength, it might be

good to pick a couple of friends with whom you are particularly close and have a

heart-to-heart conversation in which you can explain to them clearly and

thoroughly that your disease will not " get better " and that it is hurtful to

keep hearing people say that over and over. Sure, there might be a medical

miracle in 5 years that will cure your disease, but the likelihood is low (if

not zero as of now) and it is not helpful for you to live with that kind of

fantasy because it leads to more heartache and disappointment. You may be

surprised by their reaction and understanding (at least I hope so), and they

might become important forces of much needed support.

Keep your positive attitude, manage your illness as best you can, and don't let

others bring you down.

Arianna

>

> Please indulge me in this rant! I have an autoimmune disease in my eyes which

I have had for over ten years. It has been kept under control with severe

immunosuppressive drugs and now I have begun to have serious side effects. I

have been having symptoms of impending retinal detachment in one of my eyes (the

worse one, thank god!) which could lead to blindness. I dont have insurance and

my nada has explicitly said she would not pay for me to see any ophthalmologist

who wasn't in her home town (so that she can get a visit out of it). I have

finally gotten concerned enough to dip into my savings and see someone where I

live (the appt is tomorrow morning). I have tried to talk to one of my friends

about how scared I am that I might lose my vision (I'm only 27, not that being

older would make it better). I am so frustrated with her and the majority of my

friends! She/they always say oh don't worry, it will get better, they will be

able to fix it. She is in the medical field as I am, so I feel like she should

know from direct experience that there are many many diseases that cannot be

cured. I kind of approach my eyes the way I approach nada- it totally sucks and

I feel like it's unfair but I accept that this is something I'm going to have to

deal with for the rest of my life. The worst thing I can hear is to not worry

because it will all just work out. Ugh, thanks for listening.

>

>

>

[Guest guest]

I think you're friends say this because they dont want you to worry, and

it's what they really want to happen..that you'll be fine...it's hard to for

some people to just say sorry about whats happening in your life, it really

sucks..they may think they're helping you feel better...

Jackie

Please indulge me in this rant! I have an autoimmune disease in my eyes

which I have had for over ten years. It has been kept under control with

severe immunosuppressive drugs and now I have begun to have serious side

effects. I have been having symptoms of impending retinal detachment in one

of my eyes (the worse one, thank god!) which could lead to blindness. I dont

have insurance and my nada has explicitly said she would not pay for me to

see any ophthalmologist who wasn't in her home town (so that she can get a

visit out of it). I have finally gotten concerned enough to dip into my

savings and see someone where I live (the appt is tomorrow morning). I have

tried to talk to one of my friends about how scared I am that I might lose

my vision (I'm only 27, not that being older would make it better). I am so

frustrated with her and the majority of my friends! She/they always say oh

don't worry, it will get better, they will be able to fix it. She is in the

medical field as I am, so I feel like she should know from direct experience

that there are many many diseases that cannot be cured. I kind of approach

my eyes the way I approach nada- it totally sucks and I feel like it's

unfair but I accept that this is something I'm going to have to deal with

for the rest of my life. The worst thing I can hear is to not worry because

it will all just work out. Ugh, thanks for listening.

[Guest guest]

Thanks for all of your support everyone! I am trying to keep my mind off the

appt and I'm so glad the secretary squeezed me in. I just spoke with the same

friend who instigated my first post. I keep telling her I have an autoimmune

disease so I am always going to have to be on this medication so this problem is

not going to just disappear but she just replied " oh I'm so glad you're going

tomorrow they're going to fix everything " . I know that she's trying to be a

supportive friend but it's really annoying me! I agree that I probably will have

to have a talk with her about it. I've just been getting frustrated because I

have been countering every one of her texts that say " don't worry everything

will be fine " and " they're going to fix everything " . I'm annoyed that I'm not

just letting her comments slide and I'm letting her know that they are frankly

wrong. I haven't outright said that the texts piss me off but I respond to each

one saying there is no cure for this and I am trying to emotionally prepare for

likely surgery. I know she doesn't mean it but her responses just come off as

flippant.

I know that my deeper frustration is that she has never had to deal with a

" real " problem. I know that is judgmental and problems are subjective but it is

kind of true. It is just a stark difference from my other best friend who has

had to endure many setbacks so she understands what it is like to have a problem

without a storybook ending. Her younger brother is in the end stages of brain

cancer so I don't want to bother her with my problems although I know she will

be very supportive when I do tell her. It's hard for me to not compare their

perspectives and reactions which makes me even more frustrated with the first

friend. Thank you all for your thoughts, it is so nice to know that I have a

group of people who do understand that things don't always get better.

> >

> > Please indulge me in this rant! I have an autoimmune disease in my eyes

which I have had for over ten years. It has been kept under control with severe

immunosuppressive drugs and now I have begun to have serious side effects. I

have been having symptoms of impending retinal detachment in one of my eyes (the

worse one, thank god!) which could lead to blindness. I dont have insurance and

my nada has explicitly said she would not pay for me to see any ophthalmologist

who wasn't in her home town (so that she can get a visit out of it). I have

finally gotten concerned enough to dip into my savings and see someone where I

live (the appt is tomorrow morning). I have tried to talk to one of my friends

about how scared I am that I might lose my vision (I'm only 27, not that being

older would make it better). I am so frustrated with her and the majority of my

friends! She/they always say oh don't worry, it will get better, they will be

able to fix it. She is in the medical field as I am, so I feel like she should

know from direct experience that there are many many diseases that cannot be

cured. I kind of approach my eyes the way I approach nada- it totally sucks and

I feel like it's unfair but I accept that this is something I'm going to have to

deal with for the rest of my life. The worst thing I can hear is to not worry

because it will all just work out. Ugh, thanks for listening.

> >

> >

> >

>

[Guest guest]

- It occurs to me that maybe your friend just isn't equipped (or

experienced enough with real life) to be able to respond to your fears. What

she's hearing is, " there's a serious medical situation " so she's responding with

" medical technology will fix it " - what you're really trying to convey is, " this

situation scares me to death and I need to talk about my fear and have somebody

listen with compassion " - so it sounds flip when she gives you the " it will all

be OK " answer. You're trained in medicine, so you know that sometimes it's NOT

okay.

So, okay - it's a chronic condition. It can be treated, but it's not pleasant,

and there are some real possible problems. You're absolutely rational to be

scared - it's a scary situation. Maybe the best thing would be for your friends

to quit telling you it's going to be OK, and tell you they'll arrange to go with

you to appointments, sit with you before and after the procedures, hold your

hand if you need it, listen to you cry if you want to, and just BE THERE in the

long term while you process what's happening and figure out how to handle it

(because I am confident that you will be able to handle it).

Sometimes the ability to just sit and listen, and be there, come with life

experience and the knowledge that being there for another person is all you can

do for them. I think maybe your friend (the one who sounds flippant) isn't old

enough or experienced enough to know that - not her fault, but not much help to

you, either. It might help to just tell her flat out that what you want from

her is support, quiet listening, long-term friendship - or whatever it is that

will help you get through this.

Please know that we are here, listening, and we understand how scared you must

be right now. A lot of us are older and have been through a series of sucky

life experiences. People do get through this stuff, one way or another. You

are stronger than you think. You can and will prevail. Keep us posted, OK?

> > >

> > > Please indulge me in this rant! I have an autoimmune disease in my eyes

which I have had for over ten years. It has been kept under control with severe

immunosuppressive drugs and now I have begun to have serious side effects. I

have been having symptoms of impending retinal detachment in one of my eyes (the

worse one, thank god!) which could lead to blindness. I dont have insurance and

my nada has explicitly said she would not pay for me to see any ophthalmologist

who wasn't in her home town (so that she can get a visit out of it). I have

finally gotten concerned enough to dip into my savings and see someone where I

live (the appt is tomorrow morning). I have tried to talk to one of my friends

about how scared I am that I might lose my vision (I'm only 27, not that being

older would make it better). I am so frustrated with her and the majority of my

friends! She/they always say oh don't worry, it will get better, they will be

able to fix it. She is in the medical field as I am, so I feel like she should

know from direct experience that there are many many diseases that cannot be

cured. I kind of approach my eyes the way I approach nada- it totally sucks and

I feel like it's unfair but I accept that this is something I'm going to have to

deal with for the rest of my life. The worst thing I can hear is to not worry

because it will all just work out. Ugh, thanks for listening.

> > >

> > >

> > >

> >

>

[Guest guest]

I hear ya! Had this experience, again, last night... from my ex college

boyfriend from 20+ years ago. Casual chat on FB... wanted to know if my " Mom

and I worked things out. " I said, " As I've told you before, my mother is

mentally ill... no cure... off the charts... there is no working it out between

us. " He said, " Well am I wrong to believe that these things always work out and

you need to make it happen? " Um... OK!!! NOW I remember, loud and clear, WHY I

didn't marry him... eesh.

He was one of the first to identify that something was not " normal " with her

(way back when we were 19) and now he thinks I'm not trying hard enough.

Super.

Lynnette

> > > >

> > > > Please indulge me in this rant! I have an autoimmune disease in my eyes

which I have had for over ten years. It has been kept under control with severe

immunosuppressive drugs and now I have begun to have serious side effects. I

have been having symptoms of impending retinal detachment in one of my eyes (the

worse one, thank god!) which could lead to blindness. I dont have insurance and

my nada has explicitly said she would not pay for me to see any ophthalmologist

who wasn't in her home town (so that she can get a visit out of it). I have

finally gotten concerned enough to dip into my savings and see someone where I

live (the appt is tomorrow morning). I have tried to talk to one of my friends

about how scared I am that I might lose my vision (I'm only 27, not that being

older would make it better). I am so frustrated with her and the majority of my

friends! She/they always say oh don't worry, it will get better, they will be

able to fix it. She is in the medical field as I am, so I feel like she should

know from direct experience that there are many many diseases that cannot be

cured. I kind of approach my eyes the way I approach nada- it totally sucks and

I feel like it's unfair but I accept that this is something I'm going to have to

deal with for the rest of my life. The worst thing I can hear is to not worry

because it will all just work out. Ugh, thanks for listening.

> > > >

> > > >

> > > >

> > >

> >

>

[Guest guest]

Lynette - If he thinks the relationship is fixable, why not send this guy's home

address, email address, and Facebook info to your mom? It sounds like he'd be a

great chum for her. (Chum as in, dead fish to use as bait for sharks...)

> > > > >

> > > > > Please indulge me in this rant! I have an autoimmune disease in my

eyes which I have had for over ten years. It has been kept under control with

severe immunosuppressive drugs and now I have begun to have serious side

effects. I have been having symptoms of impending retinal detachment in one of

my eyes (the worse one, thank god!) which could lead to blindness. I dont have

insurance and my nada has explicitly said she would not pay for me to see any

ophthalmologist who wasn't in her home town (so that she can get a visit out of

it). I have finally gotten concerned enough to dip into my savings and see

someone where I live (the appt is tomorrow morning). I have tried to talk to one

of my friends about how scared I am that I might lose my vision (I'm only 27,

not that being older would make it better). I am so frustrated with her and the

majority of my friends! She/they always say oh don't worry, it will get better,

they will be able to fix it. She is in the medical field as I am, so I feel like

she should know from direct experience that there are many many diseases that

cannot be cured. I kind of approach my eyes the way I approach nada- it totally

sucks and I feel like it's unfair but I accept that this is something I'm going

to have to deal with for the rest of my life. The worst thing I can hear is to

not worry because it will all just work out. Ugh, thanks for listening.

> > > > >

> > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

I told him she's on facebook... they outta connect... he said, " I know she is...

I've seen her posts in your threads... she's crazy. "

Lynnette - familiar with Chum... thinks maybe he could be the manager of the

ChumBucket!

> > > > > >

> > > > > > Please indulge me in this rant! I have an autoimmune disease in my

eyes which I have had for over ten years. It has been kept under control with

severe immunosuppressive drugs and now I have begun to have serious side

effects. I have been having symptoms of impending retinal detachment in one of

my eyes (the worse one, thank god!) which could lead to blindness. I dont have

insurance and my nada has explicitly said she would not pay for me to see any

ophthalmologist who wasn't in her home town (so that she can get a visit out of

it). I have finally gotten concerned enough to dip into my savings and see

someone where I live (the appt is tomorrow morning). I have tried to talk to one

of my friends about how scared I am that I might lose my vision (I'm only 27,

not that being older would make it better). I am so frustrated with her and the

majority of my friends! She/they always say oh don't worry, it will get better,

they will be able to fix it. She is in the medical field as I am, so I feel like

she should know from direct experience that there are many many diseases that

cannot be cured. I kind of approach my eyes the way I approach nada- it totally

sucks and I feel like it's unfair but I accept that this is something I'm going

to have to deal with for the rest of my life. The worst thing I can hear is to

not worry because it will all just work out. Ugh, thanks for listening.

> > > > > >

> > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Thank you all for your support! It really helps that you all understand. I went

to the ophthalmologist this morning and it went as well as can be expected- I

still have issues with my cornea (the front of your eye), but he said my retina,

optic nerve, and everything else look great. From what he described, I'm fairly

sure at least my right eye has improved a little or at least remained stable. He

is going to try to help wean me off antisuppressants. And! I was worried he was

going to be mad that I haven't seen a doctor in years and that I'd have to

explain that my crazy nada won't pay for it. But it wasn't even an issue! I also

asked him if I could pay on a sliding scale since I have recently been cut off

and am unemployed and he responded, " oh nono we're not going to charge you for

this visit. " It was ridiculous! He and his technicians did two hours of testing

so I was at least expecting to pay for the tests. I am so so relieved that (for

now) things are stable.

I agree with all of your responses that my friend is just trying to be there for

me and that I should probably talk to her about it. ugh I just hate

confrontation but I know that's the best way to handle it. Thank you all for

your support

>

> I think you're friends say this because they dont want you to worry, and

> it's what they really want to happen..that you'll be fine...it's hard to for

> some people to just say sorry about whats happening in your life, it really

> sucks..they may think they're helping you feel better...

>

> Jackie

>

>

>

>

> Please indulge me in this rant! I have an autoimmune disease in my eyes

> which I have had for over ten years. It has been kept under control with

> severe immunosuppressive drugs and now I have begun to have serious side

> effects. I have been having symptoms of impending retinal detachment in one

> of my eyes (the worse one, thank god!) which could lead to blindness. I dont

> have insurance and my nada has explicitly said she would not pay for me to

> see any ophthalmologist who wasn't in her home town (so that she can get a

> visit out of it). I have finally gotten concerned enough to dip into my

> savings and see someone where I live (the appt is tomorrow morning). I have

> tried to talk to one of my friends about how scared I am that I might lose

> my vision (I'm only 27, not that being older would make it better). I am so

> frustrated with her and the majority of my friends! She/they always say oh

> don't worry, it will get better, they will be able to fix it. She is in the

> medical field as I am, so I feel like she should know from direct experience

> that there are many many diseases that cannot be cured. I kind of approach

> my eyes the way I approach nada- it totally sucks and I feel like it's

> unfair but I accept that this is something I'm going to have to deal with

> for the rest of my life. The worst thing I can hear is to not worry because

> it will all just work out. Ugh, thanks for listening.

>

>

>

[Guest guest]

that's wonderful news, , I'm really happy for you !!! actually, why

do you think you need to confront her ? either dont discuss it with her any

more, or ignore her comments as I really dont think she's trying to be

malicious

Jackie

Thank you all for your support! It really helps that you all understand. I

went to the ophthalmologist this morning and it went as well as can be

expected- I still have issues with my cornea (the front of your eye), but he

said my retina, optic nerve, and everything else look great. From what he

described, I'm fairly sure at least my right eye has improved a little or at

least remained stable. He is going to try to help wean me off

antisuppressants. And! I was worried he was going to be mad that I haven't

seen a doctor in years and that I'd have to explain that my crazy nada won't

pay for it. But it wasn't even an issue! I also asked him if I could pay on

a sliding scale since I have recently been cut off and am unemployed and he

responded, " oh nono we're not going to charge you for this visit. " It was

ridiculous! He and his technicians did two hours of testing so I was at

least expecting to pay for the tests. I am so so relieved that (for now)

things are stable.

I agree with all of your responses that my friend is just trying to be there

for me and that I should probably talk to her about it. ugh I just hate

confrontation but I know that's the best way to handle it. Thank you all for

your support