you don't look sick

[Alysia]

we are talking about it here and there...
I just needed a thread for this frustrating relating...
when people don't really know how it feels like... so they are demanding.... doubting.... making judgements.... :crying:
but I know that you know how it feel like ....

https://fbcdn-sphotos-a-a.akamaihd.net/hphotos-ak-prn1/t1/1544406_1474874449391367_1557746694_n.jpg

[windchime]

Alysia I so know what you mean. I feel the frustration and sadness in your post. Remember that we can only be us, we have NO control over others thoughts (and will go crazy trying to or wishing we could) :w00t: . I think you easily pick up on or are very sensitive to others emotions/feelings which makes you very empathetic. This is definitely not a bad thing, but can leave you vulnerable to emotional overload at times. Have you tried shielding to protect yourself from the energies of others? This may help you to some extent.

I hope tomorrow brings you sunshine with wonderful supportive people around you. :hug1:

[renidrag]

After the weight gain from meds and idleness, people I have known for some time see me (knowing I have been ill) say "you look great"! I guess I looked like crap seven years ago. I just let it go. They have no idea and really hope they don't ever learn.
Dale

[Alysia]

I think you easily pick up on or are very sensitive to others emotions/feelings which makes you very empathetic. This is definitely not a bad thing, but can leave you vulnerable to emotional overload at times. Have you tried shielding to protect yourself from the energies of others? This may help you to some extent.

I hope tomorrow brings you sunshine with wonderful supportive people around you. :hug1:



thank you Cindy. you are sweet and kind to me. I have "thin skin". I can't be otherwise.
wonderful supportive people are just here, in my weggie family :wub:

[annekat]

Alysia, you are usually so upbeat and positive, full of love and caring, that it is hard even for me to think of you as sick sometimes. But I know you are trying to get above it by being the sweet person you are. I am completely sympathetic, knowing that you suffer more pain and discomfort, and fatigue, than you let on. It is hard even for me to shake the feeling that I must be lazy if I just don't feel like doing anything. I don't know if you ever feel that way, but I hope you are able to find some real "down time", to rest and be away from responsibilities, in order to lower your stress level and give yourself more of a chance to shut down this crappy disease we all have, and all the related things you are going through. Much love to you! :love:

[vdub]

This has been a topic that has been covered quite a bit and it never hurts to bring it up again, especially for those who have just recently been diagnosed. Most people on the forum will agree that the "you look great" comment is the most frustrating part of gpa. Typically, we do "look great", aside from having gained a lot of weight, but they have no idea how tired we are and how much every movement hurts. They don't know what we go through to just climb out of bed in the morning and reach for our drugs. I have a sister-in-law who is convinced (and tells others) that my diseases are "not a big deal". Very maddening!

[windchime]

thank you Cindy. you are sweet and kind to me. I have "thin skin". I can't be otherwise.
wonderful supportive people are just here, in my weggie family :wub:

I don't think you have thin skin, you are sensitive. I like that terminology better. There is nothing wrong with sensitive, but as you know you need to monitor what you take in. If not you will get an emotional overload. I so don't want that to happen to you. Be well. :hug3::love: ​All for you sweetie.

PS I'm having one of those days where I look fine, but I'm feeling weak and tired. I just continue to fake it. :crying:

[pwc51]

The more 'normal' a life you lead the less people tend to understand. I fortunately managed to return to work fulltime and, most of the time, it is the best thing as it keeps your mind off 'things'. There are still plenty of times when it is a real struggle and I am probably my own worst enemy as I try to hide it!

As for 'you look great' - I have never been an adonis so why would they say that to me now, it rings a bit hollow!!!!!

[MikeG-2012]

I think we all have to deal with getting tired of telling people how we are all the time, right? Therefore, we clam up and don't say that we feel like _______, when we do hurt. Then, people think we're not sick. ARRGH!!!!

i think we all deal with sick and tired of being sick at very frequent intervals.

You are not alone Alysia, not by a long shot!

[annekat]

I tend to take "you look great" as a compliment, though later I may think "little do they know......" But I have encountered others who go on and on about their illnesses and maladies, and it gets tiresome. I find myself doing it a little with people I know will listen to me... then I try to shut it off, because I know that people who talk about their health issues all the time may be seen as hypochondriacs. It is a sticky problem. In the end, we must deal with this alone and won't get a lot of sympathy if we are out in public doing things. It might take a crisis, with us in the hospital, for people to realize we have something serious.

Anyway, maybe I have an inflated sense of how good I look, and like to think of myself as looking pretty good despite being a Weggie. People saying "you look great" confirms it, and gives me encouragement, which I guess is why it doesn't bother me so much. But I also see the flip side of the coin, and a lot can depend on who says it and how they say it.

[gilders]

I don't need or want sympathy for how I'm feeling, but would like people to understand. I have many complications with WG and other illnesses that cause pain etc. But the one thing that is more debilitating than anything else with my illnesses is the chronic, severe fatigue.
My children are now young adults and I really want to be setting a good example for them with good work ethics. My 17 year old just wants to sit and play computer games all day and neglect his studies and the elder 2 (both early 20's) thankfully have jobs and are working, but constantly complain about working 40 hours and believe that it's too much.
They were too young to remember the 60 hour weeks I used to work when I was their age even though I'd already had a few relapses of WG. The relapses and damage to my kidneys eventually caught up with me and I'm no longer working.
It's so hard to try and motivate them when they see me spending a lot of my time sat down with no outside appearance of how ill/tired I feel.
They don't seem to understand that if I do a simple job like empty the dishwasher, I feel as tired as they do after a 10 hour shift at work.

On a financial perspective, in the UK at least, claiming benefits is hard when you explain your main disability is fatigue. It doesn't seem to be considered debilitating. If only they knew........

[annekat]

Pete, that all makes sense, and people should realize that when there is severe fatigue, there is a reason for it. Not having kids, I don't have to put up with what you go through with yours. People should realize that just because a disease is rare and they haven't heard of it, or can't pronounce it, it doesn't mean it is any less real or less debilitating to the person who has it than any other disease. And the people who dole out benefits should take the fatigue, pain, and all the rest of it, seriously as reasons why a person can't work and needs help. Logically, one might think that a rare disease might get even more attention, and more help might be offered, since there won't be a lot of people needing the help for this specific thing. Instead, since it seems obscure, and the term "fatigue" seems vague to them, it gets swept under the rug. It's very sad.

[Alysia]

Thanks everyone. I knew you understand. l love you all :wub:

http://media-cache-ak0.pinimg.com/236x/18/ec/9e/18ec9ee5444940b611df791b4eeffd49.jpg

[mishb]

If you wake up - then it is a very good day :thumbsup: (the alternative is not worth thinking about)

[windchime]

mydocuments/1544406_1474874449391367_1557746694_n

[Alysia]

mydocuments/1544406_1474874449391367_1557746694_n
Cindy, I can't see it. maybe others can ?
you can post in on your facebook and then do copy and paste here.

[annekat]

Cindy, I can't see it. maybe others can ?
you can post in on your facebook and then do copy and paste here. I can't see it, either. And I've also had trouble posting pics from my computer to the body of a post here. I'll have to try Alysia's method, as well. But it shouldn't have to be that much work, and it used to be easier. I don't know why the change.

[renidrag]

I couldn't see it either, hey new avatar. I don't have any luck at all in posting a pic or a link. Something to do with being "electronically challenged."
Dale

[Alysia]

Hey Anne, you look good :smile:

[renidrag]

I thought that since I don't look sick, I could sneak that I have an appt with Pulmonary today, have been experiencing right lung pain and shooting pains in my left lung. At least I think so. Probably won't have any answers today but hoping to get x-ray or CT scan. It has been about a year without a look see.
Dale

[annekat]

Hey Anne, you look good :smile: yeah, got tired of the lampshade pic.

[annekat]

I thought that since I don't look sick, I could sneak that I have an appt with Pulmonary today, have been experiencing right lung pain and shooting pains in my left lung. At least I think so. Probably won't have any answers today but hoping to get x-ray or CT scan. It has been about a year without a look see.
DaleSorry to hear this, Dale, hope it goes well and turns out to be something manageable. Sometimes I get weird pains in that area and others and then they go away. New avatar for you, too! So like me, you have no trouble posting a new avatar, just trouble posting pics in body of post.

[windchime]

Sorry that other pic didn't post. I had tried to delete the post but apparently that didn't happen. Alysia you have this posted to your timeline also. I think it is very appropriate for this thread. Like the new avatar Anne.

https://fbcdn-sphotos-a-a.akamaihd.net/hphotos-ak-prn1/t1/1544406_1474874449391367_1557746694_n.jpg

[Jaha]

When people tell me that I look great,I say thank you it must be that special magical makeup I have on. I like most of us don't want pity I just want to be understood as to why I don't make plans for social events. It would also be nice to have those close to you actually take to inform themselves about our conditions.

[annekat]

When people tell me that I look great,I say thank you it must be that special magical makeup I have on. I like most of us don't want pity I just want to be understood as to why I don't make plans for social events. It would also be nice to have those close to you actually take to inform themselves about our conditions. Yes, I agree... I wonder if my family members, that is, mainly siblings, have been on the internet much to learn about it. Probably not, as they have short attention spans and are busy. I would tell them the best place to learn about it is by perusing this forum from time to time, and I think I HAVE told them that, and sent them the link.... however, I highly doubt that they have really checked it out.

[Tom]

When we were volunteering at a local park, I had just had my lobectomy. The camp host who were disgruntled because we were being pegged to replace them. The lady asked my wife, "If he is so sick, why is he working"? I thought that she was out of line as I was in and out of the hospital several times that first year of my DX. I have referred some to google the disease because I couldn't do it justice by explaining it and then see how sick I am. Being sick is not always constantly fever and stomach evacuations. We feel like crap but try to smile on the outside. If they only knew!

[annekat]

Yes, if they Google the disease they may get the idea we are likely to be dead in 5 years.... that would get their attention!

[Alysia]

I thought that since I don't look sick, I could sneak that I have an appt with Pulmonary today, have been experiencing right lung pain and shooting pains in my left lung. At least I think so. Probably won't have any answers today but hoping to get x-ray or CT scan. It has been about a year without a look see.
Dale
I am sorry Dale :sad: I hope that it will be simple thing to treat, maybe just a cold ?
do you think it is wg-activity ? I hope not. sending you lots of prayers and hugs. please update us, here or wherever.... :hug1:

[Alysia]

When we were volunteering at a local park, I had just had my lobectomy. The camp host who were disgruntled because we were being pegged to replace them. The lady asked my wife, "If he is so sick, why is he working"? I thought that she was out of line as I was in and out of the hospital several times that first year of my DX. I have referred some to google the disease because I couldn't do it justice by explaining it and then see how sick I am. Being sick is not always constantly fever and stomach evacuations. We feel like crap but try to smile on the outside. If they only knew!

Hi Tom, thanks for sharing. I know that frustration. it is so hard to continue to work when feeling sick... especially if you work with people (like me) and need to be nice to them :rolleyes1:

[renidrag]

Don't look sick and guess I'm not. Doc said probably muscle spasms. Lungs sounded fine,scheduled PFT for next week so he wants me to exercise more. Thanks for thinking of me.
Dale

[Michael Bell]

glad it seems ok for you Dale, and yes I am always told I look well when I feel terrible all the time.
Mike

[windchime]

Glad it's nothing serious Dale, although it may feel major to you.

Since I was originally diagnosed before my boys were born they grew up knowing I had "a lung disease." Since it wasn't active I didn't pursue it with them. Last year when it reared it's ugly little head I gave them both hand outs (can you tell I used to be an instructor) on Thanksgiving Day when we were all together. I figured if they want more information they can Google it. I can't force feed them. The youngest lives with me so he can see what has happened just in the last 4 months. I think they worry, but know there isn't much they can do.

I have not shared with many people at work why I'm out. Most of them wouldn't care anyway and I prefer to keep my life private from work. The groups that I'm a member of are on my FB page however, and if they choose to check it out so be it.

[Alysia]

Don't look sick and guess I'm not. Doc said probably muscle spasms. Lungs sounded fine,scheduled PFT for next week so he wants me to exercise more. Thanks for thinking of me.
Dale

Don't look sick plus not being sick is the best option :thumbsup:
good luck at the PFT.

[Christina32]

I recently enjoyed the spoon theory....I think someone posted it here already... Butyoudontlooksick.com. Excellent explanation of ' a day in the life...'

[Alysia]

I recently enjoyed the spoon theory....I think someone posted it here already... Butyoudontlooksick.com. Excellent explanation of ' a day in the life...'

Thanks :thumbsup: your link does not work for me, so I add here another one... great theory.
here is the link: The Spoon Theory written by Christine Miserandino | But You Dont Look Sick? support for those with invisible illness or chronic illness (http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/)

[Alysia]

a little vent, please ? :angry:
I came back from my wg-doc. he said that he beilieve that I will not get anything from the gov because of the wg. (I sent papers to get disablity) "looks how you look like, they will not give you anything"....
what can I say ? grrr..... :predrage:
and then he continued with writing that I am still smoldering.... :sad:

[renidrag]

Sorry to hear this Alysia. Is there any recourse or perhaps a more stubborn Doctor? In the States here we can request a hearing to try again. Hope you have something like that.
Dale

[annekat]

a little vent, please ? :angry:
I came back from my wg-doc. he said that he beilieve that I will not get anything from the gov because of the wg. (I sent papers to get disablity) "looks how you look like, they will not give you anything"....
what can I say ? grrr..... :predrage:
and then he continued with writing that I am still smoldering.... :sad: That is very disappointing, Alysia. I'm sorry. Doctors can be wrong about these things, so maybe you should still try. But it doesn't sound like this doctor will back you up if they ask him for his opinion. Maybe if you get a lot sicker someday.....? But we don't want that to happen, and that's why you need some help now, to make that less likely. It is ironic. I don't blame you for being angry.

[pberggren1]

I would still try sweetie. It took me 3 tries to get it.

[jakekell]

Alysia,

Been off oh here a few days this is a thread near to my heart after 8 years of this crappy weggies. I also have gained so much weight from meds so now people give me the impression that if I lost the weight I put on all would be better. People don't get it at all and given that they will as nobody knows about this disease. I try to limit the information as those who really want to hear it will look it out on the internet. My husband of 48 years and a sweetheart even forgets that I am not wanting to walk when my legs/feet are swelling up. I think we do look pretty normal, which is the good/the bad of it.

I hope your feeling better by now as it is just tough someday's. VDub's sister-in-law saying "this disease isn't really a big deal" is also happened in my family as my brother-in-law gruffly said to me "so are you over this disease now?" gotta just love them don't you.

Mary

[vdub]

if I lost the weight I put on all would be better
HA! Yes, I have heard that one, too. Absolutely infuriating. And if they aren't saying it, they are probably thinking it.

I am very lucky to have an understanding spouse. I got up this morning at about 7, but just wasn't with the program and was soooo tired. Finally, I just went back to bed instead of fighting it. I slept until 11 and the wife did the yard work that I usually do. I really have a hard time doing that type of stuff anymore -- I think its all the bending over that takes its toll.

[jakekell]

I am sure they are thinking no doubt. That is good your wife is able and willing to do those things. I am lucky my husband may forget once awhile about something I used to do, but once remembers he does it. The bending over isn't good, but the general tired is just always there.

[windchime]

a little vent, please ? :angry:
I came back from my wg-doc. he said that he beilieve that I will not get anything from the gov because of the wg. (I sent papers to get disablity) "looks how you look like, they will not give you anything"....
what can I say ? grrr..... :predrage:
and then he continued with writing that I am still smoldering.... :sad:

In the States we can hire an attorney to do an appeal for us. Anything like that over there? Or would you be better off finding a better informed doc?

[Deborah T]

I have a boss who always tells me I look great. I even had the misfortune of having a CVA (stroke) while working one day in the office five years ago. When I told my boss I was seeing double and couldn't stand up straight she suggested taking a tylenol, that I looked fine and it was probably just an inner ear problem. Wow! Ignorance comes in all shapes, sizes and IQ's. No one knows how we feel by looking at us. We try hard to blend in and not complain for fear of others running when they see us coming.
I am glad we have this forum to be ourselves, to vent, to be honest about how we really feel. We are not alone.

[jakekell]

That sounds like a boss I had really makes you wonder. I agree 100% that this forum beings some relief to be honest how we feel as I have had almost no one understand except kids/husband whote are all worried to much. One woman at our church told everyone I was in remission as she thought I looked so good! I was half dying from the treatments/infections so it really helps after all these years to feel one isn't alone in this.

Mary

[Deborah T]

I am in my very last semester for my Masters degree in nursing education. I am on sick leave from my job but anticipate being back in 2 weeks. I am exhausted just thinking about everything I will need to be doing...working...school....presenting my Master's thesis or "defend" my Master's thesis.... student teaching this week and next. Any tips on how to perk up for those days when we HAVE to be busy? No drugs please :)

Blessings -
Deborah T.

[Alysia]

Thank you my friends :love: we are blessed to have each other, and this place. our mutual understanding is so precious and comforting.
Of course I will try to get it. My doc is not the one who decide. There is a committee of docs which is checking.
The problem with my doc is that all the years he thinks that my WG is not serious because I don’t have kidneys involvement. He also did the "limited wg" mistake, thinking that it shouldn’t be treated seriously. For more then 3.5 years he treated me only with bactrim and a bit of pred. each time I came with more deterioration he was surprised. Lately he apologized about reaching the state of saddle nose. (it was his neglect) but still he is available for me whenever I need and fighting for me to get approval of the rtx.
docs are also making mistakes and misunderstanding us, by the "you don't look sick" attitude. and when the doc is wrong, it is worse then when others... :sad:

[Alysia]

I am in my very last semester for my Masters degree in nursing education. I am on sick leave from my job but anticipate being back in 2 weeks. I am exhausted just thinking about everything I will need to be doing...working...school....presenting my Master's thesis or "defend" my Master's thesis.... student teaching this week and next. Any tips on how to perk up for those days when we HAVE to be busy? No drugs please :)

Blessings -
Deborah T.
Hi Deb. wow. it sounds a lot ! what can I say ? I think that you should listen to your body, and not overdo. nothing will go away. things will wait for you.
good luck and take care.

[jakekell]

Deborah T.

Wow is right! I worked the first 5 years I had wegs and don't know how I did it other than forcing myself. That is a big load, maybe take a power nap whenever possible. I used to sleep in my car for lunch and sometimes breaks, had a great boss during some of this time. I am now retired and still tired. I think all you can do is the best you can and I suspect that will be very good, rest every chance you get.

Mary

[MikeG-2012]

I am in my very last semester for my Masters degree in nursing education. I am on sick leave from my job but anticipate being back in 2 weeks. I am exhausted just thinking about everything I will need to be doing...working...school....presenting my Master's thesis or "defend" my Master's thesis.... student teaching this week and next. Any tips on how to perk up for those days when we HAVE to be busy? No drugs please :)

Blessings -
Deborah T.

OK,here's my .02 worth after not being back to work full time yet, since November 1. I'm back to 7 hours a day 4 days a week and less on Friday if I feel I need to get out of there. Most of the time, I work 7 hours on Friday too. But, there have been Fridays when I know that I'm D.O.N.E. done, and need to go home early, and I do it. I'm working on a slow and steady back to work progress.

One way to ensure that you and your employer/school are on the same page is to have your doc write your back to work letter at 6-7 hours per day, no more than (X) hours a week until you are ready to jump back into a full work week. My doc did this to me without my asking for it (he knows me too well). Right now, I am released at "no more than 8 hours a day, not more than 40 hours a week." Basically, full-time, but no long days. Pace yourself and CRASH whenever your body is telling you to do so. I've over done it more this flare up than when originally diagnosed, and have paid the consequences for pushing myself to hard. Keep in mind. it might take you two or three days to get back up to speed from the one day you over did it at work (ask me how I know). I know that I'm being very pessimistic here, but I learned the hard way, more than once, this time around!

My best advise on how to do this is LISTEN TO YOUR BODY and what it tries to tell you. It knows best.

[mishb]

Speaking of bosses.....my boss has the flu at the moment :sad:

He has been away from work for the past week and still isn't much better, however, he has to come in tomorrow for a meeting.

He thinks that it is a joke that I am going to give him a surgical mask and gloves to wear when he gets in.......he will wear them because he will think he is having a laugh with everyone - however, he will be protecting us all. The laugh will be on us :flapper:

[jakekell]

Talk about rude! I think this will be a case of Karma, he will have life hit him one day. My old VP was told by my supervisor to be careful when sick around me as the department was all going to try to not give me the flu etc. The first thing he does with a terrible cold is to get right in my face go figure! People in my dept climbed all over him, maybe others will come help you out? This is all hard enough without people not taking us seriously, good news about getting old I was able to retire to get out of that work mess.

Mary

[Deborah T]

FORTUNATELY I have my own office. On my lunch, I turn out the light, turn off my phone and take a 15 minute power nap. It actually does help. Good advise :-)

[annekat]

FORTUNATELY I have my own office. On my lunch, I turn out the light, turn off my phone and take a 15 minute power nap. It actually does help. Good advise :-) That is great, you are lucky to have that. I'm now thinking of Alysia in Israel, who also has her own office, and I hope she does the same. In addition, she has an office cat! Sort of irrelevant to anyone but us cat lovers. i don't imagine most people have offices that are set up well for cats.

[Alysia]

That is great, you are lucky to have that. I'm now thinking of Alysia in Israel, who also has her own office, and I hope she does the same. In addition, she has an office cat! Sort of irrelevant to anyone but us cat lovers. i don't imagine most people have offices that are set up well for cats.

:lol: my office's cat, Domino, is living outside my office. my office is in a building of 4 families with big garden and an open basement. so Domino, lives in the basement and the garden, or coming to my office or to the other families at the building. especially when it rains... everybody is feeding him and playing with him, and he is nice and friendly cat. here he is, in my office...


https://scontent-a-fra.xx.fbcdn.net/hphotos-prn1/t1.0-9/1487455_1437651609780318_1443314477_n.jpg

[Alysia]

Speaking of bosses.....my boss has the flu at the moment :sad:

He has been away from work for the past week and still isn't much better, however, he has to come in tomorrow for a meeting.

He thinks that it is a joke that I am going to give him a surgical mask and gloves to wear when he gets in.......he will wear them because he will think he is having a laugh with everyone - however, he will be protecting us all. The laugh will be on us :flapper:

If he will only DARE not to wear that mask, he will have to deal with us :wink1:
please tell him, that lots of weggies, all around the world, are on-line waiting to hear how he "behave".... :rolleyes1:

[mishb]

I will let you know.

He hasn't made an appearance as yet but it's only 8.10am. Hopefully he just comes in for our meeting and then goes.

He is a good egg and will do as he is told :flapper: His wife is a nurse, so he gets the big picture

[MikeG-2012]

... good news about getting old I was able to retire to get out of that work mess.

Mary

Oh, Mary, I dream of those days, but I have about 15 years before I can even think about retirement. Plus, working at a public institution (a college) in Illinois where the pension system is broken beyond repair, due to the Governor and legislatures raiding the pension fund of all the funds years ago to pay bills/debts, I might never be able to afford to retire. Let's hope I'm wrong!

For the record, I'm jealous!! (-8

[MikeG-2012]

Speaking of bosses.....my boss has the flu at the moment :sad:

He thinks that it is a joke that I am going to give him a surgical mask and gloves to wear when he gets in.......he will wear them because he will think he is having a laugh with everyone - however, he will be protecting us all. The laugh will be on us :flapper:

Are you going to sell tickets to the Michelle vs. Boss smack-down Michelle? I'd love to see you give him a thing or two for all of us immune-suppressed Weggies!! Go get 'em!! LOL! (-8

[Deborah T]

That's awesome Alysia. Our office has a strict no pet policy...except for our CEO who brings in her dog on occasion. I would LOVE to bring in my cat or dog. They are (usually, lol) very therapeutic.
Blessings -
Deborah :rolleyes1:

[Deborah T]

That is SOOOOO hard. I work in a building with hundreds of people. I am scared to death of catching what is lovingly referred to as "the office cold" when they come around. You are lucky that your boss is masking/gloving for you.
Just to be on the safe side, will you be masking also?

[Alysia]

I will let you know.

He hasn't made an appearance as yet but it's only 8.10am. Hopefully he just comes in for our meeting and then goes.

He is a good egg and will do as he is told :flapper: His wife is a nurse, so he gets the big picture

the tension is killing me :wink1: so.... ?

[mishb]

I'll have to wait until the others get into work this morning to find out.

I intentionally stayed clear of him, and now he will be staying home again.

Im pretty sure he would have put them on - I'm just hoping someone got a picture :flapper:

[mishb]

Bad news kids - he didn't wear them :ohmy:

The comment was - well since Mish isn't coming into the meeting now (I was stuck doing other stuff), there is no need to put the mask on.

Boo :crying::thumbdn:

[jakekell]

Mike,

Retirement has helped a lot that is terrible about your retirement system just wrong. I worked for banks and kept getting bought out so each time my pension would end so have 3 not big pensions. We each save 15% in our 401K as afraid to depend on the companies so it worked out well. We do have disability in the states if it gets to bad.

I feel for your desire to rest your body and get out of the work stress as there were times it was pretty hard. Hang tough it will go faster than you think!

Mary

[Deborah T]

ARGH! I don't think people get it. They have no idea that a simple cold for them may mean pneumonia for us. I work in a health-care agency. I will have people stand in my doorway and say, "I can't come in your office, I'm sick"....however, just meandering about in my doorway will introduce enough germs for me to get pretty darned sick. Education is the key, but it is difficult when we work in a society that penalizes people for calling in sick and staying home when not feeling good, thus, spreading their "look at me, I'm working today and I am sick" germs. Once again, I say, ARGH! If they want us to work, and they do, they need to take us and WG seriously.

[Alysia]

Bad news kids - he didn't wear them :ohmy:

The comment was - well since Mish isn't coming into the meeting now (I was stuck doing other stuff), there is no need to put the mask on.

Boo :crying::thumbdn:

in Hebrew we also say: Booo, which is a shorcut of the word in Hebrew that means somthing like shame or contempt... "Boo to you, Mr. Boss" :angry:
I hope that he kept his germs :sneaky: to himself :scared: and that you are safe :razz:
"Mish" is nice name. I think I am going to call you Mish :wub:

[Alysia]

Bad news kids - he didn't wear them :ohmy:


at least you can tell him to be careful....
I had today 2 patients coming to my office really sick, coughing and sneezing :crying:
I allways sit with open window, but who knows....
I now pray that their germs didn't catch me... :scared:

[MikeG-2012]

If any of you haven't seen this video (http://www.youtube.com/watch?v=aj6b5Jjh_gw) yet, please do so. It pokes fun at a germ free office, but in reality for some of us, it's not too far off.

Funny Staples TV Commercial, 'Sneezer' , 'Germ Free Office' 2014 | FunnyAds - YouTube (http://www.youtube.com/watch?v=aj6b5Jjh_gw)

Maybe its time we made our own "We don't need your germs" commercial?

[Deborah T]

Alysia - I admire you for working in that environment. I am an RN and am scared to death of working in the hospital environment. I may succumb to working at home in triage, which is so not what I want to do. I miss patient contact :-(
But, we really need to think of our health. Sick people will always be around us. It is almost a full-time job avoiding them.

[Dirty Don]

I certainly understand the desire/need/wish to be in germ free environs, but that's probably not possible unless ya got one of those neato plastic bubbles and a lot of germicide spray....anyway, my pulmy, and 2 rheumys have said same thing: told me that I am as susceptible as anyone else out there, but with WG and the drugs, I am still the same as before dx...that's the point of remission. So, are extra precautions necessary? Yes, but not to the point of obsessive behaviors. I wash, avoid super congested events/places, take my drugs, and don't really make much of an effort to avoid people. Then again, I don't work in an enclosed environment, but even then just being aware goes a long way. Best to you all!

[mishb]

I spend over two hours a day on a train getting to and from work.
That's one enclosed environment that you just can't control :sad:

If I was a total germaphobe I wouldn't be able to work at all, therefore where I can control the situation - I will do my best to

[Alysia]

http://www.quickmeme.com/img/37/37b7cf3cec3e33ba9e39dfe1f2b01c49eda3b1e75b323f217f 718d4d5e6edb7e.jpg

[mishb]

http://www.quickmeme.com/img/37/37b7cf3cec3e33ba9e39dfe1f2b01c49eda3b1e75b323f217f 718d4d5e6edb7e.jpg


Hey.......that's me :flapper:
Yes, I can certainly relate to that

[Victoriaitsnosecret]

I left work last June. I couldn't work anymore it was just too hard. I applied for disability and was denied. My appeal was denied and now I'm waiting for a hearing. Have people had luck getting disability or have any advice when applying? Thank you!


Sent from my iPhone using Tapatalk

[annekat]

I left work last June. I couldn't work anymore it was just too hard. I applied for disability and was denied. My appeal was denied and now I'm waiting for a hearing. Have people had luck getting disability or have any advice when applying? Thank you!


Sent from my iPhone using Tapatalk How long did you wait after stopping work before applying? I've gotten the impression you have a better chance if you wait something like 6 months, but then I've heard other things, too. They want to be sure you are unable to work, and if you were just working full-time right before you apply, they'll think you are capable of working. I was successful in getting SS Disability, but I'm in a unique situation. I am self-employed making and selling pottery and was already making so little when I got diagnosed that it was below the limit for them to consider it gainful employment. Of course, I think having undiagnosed Wegs for 2.5 years contributed to my inability to do better and make more income. I received a retroactive payment going back as far as the regulations would allow. I think the system should be changed to make people qualified to get benefits when they first get sick or diagnosed with a serious disease such as Wegs.

I realize, though, that you have appealed twice, it sounds like, so a lot of time may have gone by. Best of luck on the upcoming hearing, and I guess I'd say if it's denied, get another lawyer and keep trying.

[Victoriaitsnosecret]

I applied a month after leaving work. My initial application was denied. Then I appealed that decision and still they denied me. The 3rd stage is this hearing. I don't know what happens after that. I had a full time job but my attendance was inconsistent. I tried to leave a few times but then was talked into staying. I finally couldn't do it anymore. I'm crossing my fingers.


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[windchime]

I applied a month after leaving work. My initial application was denied. Then I appealed that decision and still they denied me. The 3rd stage is this hearing. I don't know what happens after that. I had a full time job but my attendance was inconsistent. I tried to leave a few times but then was talked into staying. I finally couldn't do it anymore. I'm crossing my fingers.

Hi Victoria, Do you have an attorney? I'm in the process right now. I was denied the first time and they didn't receive my appeal. So I've sent in another "initial claim" and it has made it to the review stage so I'm waiting. From what I understand the process is much easier to go through with an attorney. I had one, but fired them and I'm in the process of getting a local firm to represent me. I don't have any advice except hang in there and consider an attorney if you don't have one. If they win it for you it's worth it and there is no money up front.

A lot depends on what your doctors report back to the SSA. From what I remember you have been mostly asymptomatic except for the fatigue. That could be what is causing you to be turned down. Good luck and keep us posted. If you have any questions you can always PM me.

[Victoriaitsnosecret]

Thank you. I do have an attorney. I finally figured it better get one. I was asymptotic except for the fatigue but now I'm having lots of joint pain, back pain, knee pain. My hands and knees get so stiff it's hard to move them. I was asking some of the other people on here if they thought it was a flare? I'm off prednisone for about 3 months but still on methotrexate. When you don't "look" sick it's hard to prove you are. I've been thinking well maybe I can work here or there but physically I really can't. It stinks that it takes so long. Thank you.


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[Alysia]

I am also trying to get one, eventhough I am working. if I will get it, I will not have to pay so many taxes. but as I wrote above, my doc said that "you don't look sick" so he doubt I can get it....
I will update how it is going on.... I will have to meet a committee.... need to preprare myself "to act" like a dead-walking :rolleyes1: or I think that my first statement will be to explain to them about invisible illness... :unsure:

[Deborah T]

Alysia- Looking sick is superficial, you can dress up a corpse and put on just the right makeup for it to not LOOK sick. Doctors ... jeesh. What is important is your labs.

[jakekell]

Alysia,

I think you have it the perfect name for this weggie mess "the invisible illness". People always say "you look great!" I have to agree that I don't look sick. I may not like the weight gain, but keep trying to fix it. I just wish we could figure out some way that people could really understand what is happening to us. Sometimes I am not sure what is happening to me as I look so "normal".

I stated before my wonderful husband of 48 years sometimes has a hard time remembering how bad this is. He does know of course and lets me know he had a moment of forgetting as I don't look sick on a daily basis.

We have had a great cold/flu season with a few little changes. We keep antibacterial wipes in the car and both of us them when we are done in a public place/wash our hands good when we get home. I take a mask if we are in really congested places, don't use unless really feel I need to. We like to go on casino trips so mask/wipes seem to have worked good we haven't had anything in over a year. I did this when I still worked and everyone knew no using my phone. My co-workers were good about not trying to kill me off.

Mary

[lag713]

Invisible illness is a real thing in organizational psychology, occupational health, and social psychology literature. It is known as “invisible” chronic illness (ICI). There is a lot of research on hidden identities, disclosure, and stigma related to chronic illness in the workplace and the intersection between work and home life. In workplace literature, a large focus lies on the laws that protect employees with health conditions under ADA. It's a bit ironic that ADA can leave people with invisible chronic illnesses without protection.

[jakekell]

Very interesting information.

[Chadwyck]

I got that answer just today..."you don't look sick"

I told the person... I (feel sick) I didn't say (I look sick) in the mirror. When you start to live in my body I will listen to you, until that day, take my word for it!

[greenjeep]

I must be uglier than I thought. I don't get the "you don't look sick" much, if ever. I do try and hide it on a day to day basis, and it probably only really shows to my immediate family.
I have noticed though that a lot of the time my wife is shocked when she comes in the room and I'm staring at the floor or looking like I Will doze off any second. Even though she knows what's up, it's easy to forget.
It happens to me too. I think "I can do this or that" and find out half way through the project that I need a long break. It is humiliating not to be able to do things that even 1 year ago I could do.


Sent from my iPhone while driving on the freeway.

[jakekell]

Too funny maybe some of it is the people we are around. I know what you mean about not doing what you could it is tough.
I am just now into my 9th year since they named this beast and even though I think I am doing pretty good not next to my friends.

We are in a retirement park in the winter with lots of the other women running marathons (so to speak). I am riding bike some most days, but feel like I am a do nothing next to most of them. I know it is hard not to feel humiliated by it at time and have. I am trying hard not to compare myself to others around me here the same age. I think sometimes it is worry that this is disappointing to our spouses? My husband came in at lunch today excited that some of the gang want us to do a cruise with next winter, which I know will be fun. I of course now will have to hope I can keep up so know what you mean.

Mary

[renidrag]

Sure can relate to that Greenjeep.
Dale

[MikeG-2012]

It happens to me too. I think "I can do this or that" and find out half way through the project that I need a long break. It is humiliating not to be able to do things that even 1 year ago I could do.

And I thought I was the only one! Wow! Stop looking over my shoulder greenjeep!

[Lilly]

I so enjoyed reading all of your posts In response to Alysa's post. It is an extremely frustrating (putting it lightly) thing to deal with. The only people who truly understand me is my family. I am fortunate to have them keep me from over-doing it. I work part time with my sister. She is constantly making sure if I am hiding my lethargy, she can see that "look in my eyes", and makes me go home and take a nap. My Mother drives me places if I am too tired from meds. But so many do not have this support system, and it has to be such a terrible feeling to get your family saying "oh yea, she/he is not really THAT sick." Just a little arthritis and sinus problems, etc".....And when you fall asleep during a family "get togather", everyone thinks your just lazy. I don't spend the the night with friends who live too far for me to drive home after a visit. And the reason is, I STAY constipated, and do not want to get in an embarrassing situation if things "move" while im there. Its a very personal thing, but I need a plundger close by, and so I don't want to tell that to anyone but people who understand. Like Yall. Last nite I was so tired I went to bed at 8pm. No big deal, just needed extra sleep. But I woke up, and I was so tired and slept so hard, that I tinkled in my bed. Did not even wake up. This has happened before occasionally, so I have a pad under my sheets, but I still cried and cried because I felt so embarrassed. Even thought I was by myself. My ex-husband grossed out so bad when this happened for the first time, right before our divorce, that I guess I feel ashamed when it happens. But for me, its part of what wegeners has done to me after 23 yrs. I hope I am not being too open or personal, but today, when I go to work, all day I will be feeling upset that it happened. No one will know, but it still makes me upset. We deal with things like that, and I go to work, and people say, "you look great! I can tell you've lost 10 pounds!" But they don't know what happens to me sometimes, how im feeling inside. I know how you feel Alysa. I look strong on the outside, but im not on the inside sometimes. Today will be a day that I will be glad when it is over. :-(

[Alysia]

I must be uglier than I thought. I don't get the "you don't look sick" much, if ever. I do try and hide it on a day to day basis, and it probably only really shows to my immediate family.
I have noticed though that a lot of the time my wife is shocked when she comes in the room and I'm staring at the floor or looking like I Will doze off any second. Even though she knows what's up, it's easy to forget.
It happens to me too. I think "I can do this or that" and find out half way through the project that I need a long break. It is humiliating not to be able to do things that even 1 year ago I could do.


Sent from my iPhone while driving on the freeway.

Hi greenjeep, thanks for sharing :hug2:
I understand the humiliating feeling, even tough it is prob more a men's one. too sad :crying:
at least your wife knows how you are feeling :unsure:
and you keep your sense of humor, while driving on the freeway :wink1:

[Deborah T]

Lilly - Life truly is a gift. I think the only thing I "like" (and I use the term loosely) about Wegener's is that I can rejoice in each day that I feel good. I don't take the good for granted, and I appreciate other peoples' sufferings more. As a nurse,
this has been a valuable life lesson for me.
I hope you have better days.
Blessings -
Deborah T

[jakekell]

Lilly,

This whole deal is a bit much at times as we all know. I am sorry you ex made you feel ashamed as it just happens. I can tell you my badder isn't what it used to be after having cancer, then WG/all the meds. I have a pretty good sense of humor, but have to say sometimes I have to look for it/find it under a rock!

We are wrapping up our winter holiday here and heading back to MI soon so we thought we would make a quick trip to our favorite casino. We had a great time, but as with most of us I started getting tired after a couple of hours. I hated to tell my husband lets go so did made it a little longer than wanted to, slept all the way home. My Mom used to remind us when we were upset "it is what it is", we don't have to like it just deal with it.

I hope you can feel better about the bed issues soon it washes out, a real men deal would not have made you feel that way. He must have been rather special....or something I won't say.

Hugs to you,

Mary

[Lilly]

Glider, That is one of the worst things to me too. Sometimes I feel like I am sleeping my life away! But I am not dealing with raising young adult children. I wonder of your children have investigated your disease.....learned about it.....written school essays about this rare disease that you suffer from? I know different cultures handle things differently, and I am not sure about the differences in the UK and the USA about being open about illnesses. Maybe they would be ashamed, or maybe they know, but still just don't get it. I can see your concern about wanting to be a "role model" for them, and battling fatigue. No one knows the depth of fatigue we suffer from.
I had to fight for my "disability" in USA. I had to sit in front of a judge and tell her why I could not work, after a year of keeping records of every Dr.Appointment, every surgery, all my medicine changes, my flare up I had in that time. My osteoperosios caused me to break my arm and my hand in one year, both needed surg. and metal to heal. I told the Judge I wanted desperately to work, but for these reasons, no one would let me have time off of a job for these dr appointments, infusions, surgeries. So I was granted my "disability". That's ONE way it works. I was not being deceitful in saying I wanted to work. My sister got me a job where she works, for Eye Dr. I sit and do Insurance on the computer. (You cant really break any bones doing that!) 4 Days a week, appx 20 hrs a wk. But I have the flexability to not come in if I am too tired, or having wegeners complications. I am blessed for this job. Maybe you could find something like that. I never thought I could! But I did! Your lethargy may keep you from doing this. I have to sleep more hours at night to have this job. I wish you could get on "disability", so maybe you should try, I had to get a lawyer, but I got it. Kids these days, even raised in good homes like yours with good hard working parents, just don't grasp the work ethics we had. But I will hope you are feeling better soon about your illness, and maybe if your kids learned more about your years of fighting this disease, they can appreciate it more. And realize, you are doing the BEST YOU CAN! Take care, and wish you the best.

[Lilly]

Keep trying Anne. Maybe send them a condensed version of Wegeners, focusing on what you specifically suffer from, and the results that can happen, and how the condition is affecting you now. Just a page or two. Maybe they will listen, maybe you have already done this, maybe they still will not get it. But maybe its worth a try. Wishing you luck ...... :-)

[Lilly]

HaHaHaHaHa!!!!!! Sooooo Cute Alysia! My early morning laugh! Thank you!

[Lilly]

Thank you Deborah T, and Mary. After I posted that, I thought......People do not want to know this stuff!!!! I felt embarrassed. But It just brings me down to a low for a day or two. And just makes me realize THATS a big reason I am such a "homebody". I never know when these things will happen! But feeling better today, and your posts did that for me. I will always have to deal with these things, and so, just find the humor in it, forget what the Ex husband did, He was good when the disease was young, but as my body started to have worse and worse issues, the less he was there for me. He made me feel like I was Overreacting. But I thank you both for your understanding and un judgemental replies. Have a great day! I am going to do my best!

[Alysia]

Thanks for your precious sharing Lilly. we love you :love: :hug3:

[Lilly]

Thank You Alysia, Thank You so much. I have changed a lot since I have surrounded myself with friends like you. I Love how we can all be there for each other in so many different ways. I have learned a lot about our illness in general, and how some have it better and some have it worse. But we are all blessed in some kind of way. When I got your post, it made me cry just because you cared. Everyone on this site is special, and I am so glad to be a part of it. I love everyone on here with an unconditional love and respect we all seem to have for each other. It is amazing,......we just gotta keep on keepin on! And just do the best we can. Love to all~

[Alysia]

I need to vent please….. :blushing:
So, I had today the doc's check for asking recognition in disability. (It is less about getting something, which they will prob give nothing since I am working, but I wanted it in order to pay less taxes).
When I just came there I understood that I have no chance: everyone who came there was kind of being lame :rolleyes1: some came with crutches (I hope that is the word for using 2 walking sticks) although I suspect that some of them were liars. At least 2 came to the room like they are going to fall at any min and went out almost running…. :sneaky:
the check lasted no more then 5 min. the doc was arrogant narcissistic character, he asked what are my symptoms and "cut" me after 2-3 words, with kind of dismissive gesture, and commanding tone for "next". The idiot (sorry, I an angry :angry: ) didn’t even noticed my saddle nose until I told him. then he checked my joints (without washing hands after the "lame" who just was inside before me). it was frustrating and even humiliating :sad:
I came home angry, damn gov, they can use you so well, doing army, paying taxes, but then they give you nothing.... :predrage: I went to clean the litter box of my cats and it spilled on me…. this was the final accord to define my day as a **** day….
But then, after a shower, I decided not to give up and I wrote a an e-mail to their ombudsman complaining about the disrespect. I doubt I can get anything, still, I said what I had to say :unsure:
Thanks for listening :love:

[annekat]

So sorry, Alysia. I feel your frustration. Yes, write the letter of complaint. I'm glad you have this forum on which to vent.

[renidrag]

I'm sorry too Alysia. We try to do the right things in our lives and when we deserve something, few doors open up for us.
Dale

[annekat]

Keep trying Anne. Maybe send them a condensed version of Wegeners, focusing on what you specifically suffer from, and the results that can happen, and how the condition is affecting you now. Just a page or two. Maybe they will listen, maybe you have already done this, maybe they still will not get it. But maybe its worth a try. Wishing you luck ...... :-) Lilly, I wanted to clarify that I did indeed get disability, on the first try, even though I'm not as sick as some others on here. I was one of the lucky ones, and it may have been due to age and the fact that I already was making so little at my self employment that they didn't consider it serious work. I still have to continue that work, because of course, the disability isn't enough to live on, especially for me, who didn't pay as much as others into the system so don't get as big a payment. I feel much worse, though, for those who are struggling with Wegs and trying to work to make ends meet, who really deserve to get the disability but can't, so far. Yes, they should keep trying. And the system should change to give more of a break to these people. Same with the system in Israel, for Alysia.

[jvilner]

Sorry you had a bad day Alysia. The system sucks here and I don't think they know enough about wg. Write a letter to kupat cholim (israeli HMO) or even better go to their offices and sit in front if a clerk. It is time consuming but I got things taken care of that way. (Regarding Tofus 17). Good luck!


Sent from my iPhone using Tapatalk

[pberggren1]

I'm so sorry sweetie pie......:sad: Here as well we don't look after our military veterans very well.

[windchime]

Hey Alysia, Sorry for your crappy day. I know how humiliating it can be at times. It sounds like you handled it like a mature person should. :thumbsup: Kudos to you. There are many getting social security disability here that do not deserve it, while those that should get it, don't. It's disgusting. :angry:

Write that letter as they main office should know what's going on in the field. Is there an appeal process if you are denied? Hang in there kiddo. Something good is coming your way. :ohmy:

Had to laugh about the cat box as I've done that myself. Since I have to empty mine today I hope I've not jinxed myself. LOL Hugs and lots of love to you. :wub: :hug1:

[jakekell]

Alysia,

I really feel for you, don't know how your system compares to the US. I know it can be hard here at times, but the older a person is they seem to get it sooner. I hope you can appeal this, what a doc if that is what he calls himself jerk!

Prayers to you,

Mary

[Deborah T]

Alysia - It's bad enough to feel like crap - but it is insult to injury to be treated like crap too. Please, report the "doctor" (and I use the term loosely), may even want to send a little note to your local newspaper
to talk about the injustice of being treated like less than a person by a medical professional.

Hugs your way.

Blessings -
Deborah

[Debbie C]

Alysia,you go girl !!! Write all kinds of letters to everyone you can think of and report the guy that dismissed you like that. Sorry you had a S***** day,but that was funny about the litter box ( Sorry had to laugh there )

[keegan55]

My husband thinks that way and just sits on the couch and watches me stuggle with daily chores He does not understand all he says well you should be ok it was not cancer... grrr I need a dr to explain all this but he I believe will never understand perhaps he does not want to

[windchime]

My husband thinks that way and just sits on the couch and watches me stuggle with daily chores He does not understand all he says well you should be ok it was not cancer... grrr I need a dr to explain all this but he I believe will never understand perhaps he does not want to

Keegan encourage him to come on the forum and read about the disease. It may help if you can get him to.

[annekat]

My husband thinks that way and just sits on the couch and watches me stuggle with daily chores He does not understand all he says well you should be ok it was not cancer... grrr I need a dr to explain all this but he I believe will never understand perhaps he does not want to I was hit with the "not cancer" remark today... Was making special arrangements to pay my late power bill on an installment plan, and they are nice about that. But when I mentioned my potentially life threatening illness, I was asked, "does it have anything to do with cancer?", as apparently they give some special considerations to people with cancer. Weggies can have end stage renal disease, which is as bad as cancer, or worse. I don't, of course, and I'm glad I don't have cancer, but I get a little tired of people acting like cancer is the only really serious or incapacitating disease.

[pberggren1]

Strange they would not give special consideration to all illness.

[annekat]

Strange they would not give special consideration to all illness. I'm not sure they wouldn't, if someone was really sick with something life-threatening other than cancer. And had a note from their doctor, etc. We didn't get that far into the issue. I'm not that sick. I know cancer survivors who've been through a lot worse time than I have, and some Weggies, as well. I just get tired of hearing "at least it's not cancer" when they know nothing about what it IS.

[pberggren1]

So true Anne, I hear ya. Most have no clue what cancer is either.

[annekat]

So true Anne, I hear ya. Most have no clue what cancer is either. True, I'm sure, Phil... but when they hear the word, they know it means something really, really bad that people die of! You say Wegener's or Vasculitis, it means nothing to them. You say autoimmune disease and they think, lupus, RA, MS... other things they know little about, and things that we wouldn't wish on anyone, but you know what I mean... and those "aren't cancer" either!

[Alysia]

Thanks everyone, from the bottom of my heart :wub: for your love and support and good words and discussions. I love you very much :love:
the litter box was mentioned as a comic relief :wink1:
I am very easy to be calm down. once I wrote, it is over. I can be emotionally transformed to relax very fast, so the world looks different :biggrin1:
I sent a letter, complainning about the disrespect, to their Ombudsman. will see what will they answer.
hugs to each one and one of you :hug1:

[Alysia]

Sorry you had a bad day Alysia. The system sucks here and I don't think they know enough about wg. Write a letter to kupat cholim (israeli HMO) or even better go to their offices and sit in front if a clerk. It is time consuming but I got things taken care of that way. (Regarding Tofus 17). Good luck!


Hi Joyce,
I am so glad to have you around :biggrin1:
I am not at the Klalit but at Macabi. and it was a check of Bitua-Leumi.
אני בקופת חולים מכבי ולא בכללית. הגשתי את הפניה לביטוח לאומי. לבקש הכרה בתשעים אחוז נכות
I am sorry to say that they DONT know anything about WG. I saw so many docs, who never saw any weggie but me. even the rheumy's don't know how to treat it good enough. only when I came to the forum I learned how it should be treated and then I asked for it.
thanks again :thumbsup:

[Alysia]

So true Anne, I hear ya. Most have no clue what cancer is either.
Dr. Phil, I think that you should come to Israel to give a series of education about WG to our docs :wink1:

[Alysia]

My husband thinks that way and just sits on the couch and watches me stuggle with daily chores He does not understand all he says well you should be ok it was not cancer... grrr I need a dr to explain all this but he I believe will never understand perhaps he does not want to
Hi. maybe he is feeling too much depression to be able to do something ? too much out of energy ? it can happen to us, dealing with this nasty disease :sad:

[annekat]

Alysia, it seems like since you were approved for a drug as expensive as RTX, that should get their attention as to the fact that you have something serious, and make them want to know more about it. But only in a perfect world...

In the disability process here, at least vasculitis has been recognized by them as something deserving of special consideration, it is on a special list of "impairments" or some such wording, so that it sends up a red flag to people doing the evaluating of the case. But that still doesn't mean the person will get the benefits, if it looks to them like they can still work with no problem. What's really unfair is when people are working when they really shouldn't be, because they need to for the money, but then that makes them look like they can work, when it is really bad for their health. We know people like that on here. One tactic is to cut back on hours so that you are making a small enough amount to qualify, and so you can get a needed break, but it needs to be for a certain amount of time, like I think 6 months, and not everyone can afford to do that. They expect you to have savings or something to get you through that period of reduced or no work. So our system is pretty messed up, too, if in different ways.

Whew, I'm up late watching my kiln and just turned it off... 3:40AM here.... now, to bed!

[Alysia]

thanks Anne, good night :)

[acker]

Hi Alysia, Don't I know that feeling. Today I have just come back from my local hospital, had to go for an MRI scan to check out how my Postate cancer is going, I had an op for that in 2004, they can't do biops for it anymore because of the Weggies I got in 2011. Someone I was chatting to in the waiting room, said to me "you look well" after which moaning about how long he had been waiting there. I just grinned and thought to myself, if only you knew !! I always remember being taught first aid by an ablulance man years ago, and think of what he said about accidents "when you arrive always treat the quiet one's first, they are the people who need you most" I admire you for being sensitive, and think all the guys n galls on this site are wonderfull, all helping, caring and sharing as they do. Acker :thumbsup:

[Alysia]

I always remember being taught first aid by an ablulance man years ago, and think of what he said about accidents "when you arrive always treat the quiet one's first, they are the people who need you most"

Hi Acker,
thank you so much for your kind words :thumbsup:
this statement is so true. the ones who are more quiet are those who are in a greater pain. my friends know that when I am quiet, it means that I am not feeling well.
nice Avatar. it that you ?

[jvilner]

I am sorry to say that they DONT know anything about WG. I saw so many docs, who never saw any weggie but me. even the rheumy's don't know how to treat it good enough. only when I came to the forum I learned how it should be treated and then I asked for it.


Alysia- happy to have you around too!! 😊 sorry for these circumstances though. I am also with Macabi. I found dr. Lidar by chance. She didn't give me meds until a biopsy was taken from my ears. I was in mtx for joint pain and possible arthritis. I hope that I was treated in a timely manner. I am confidant with her but miss the tlc (tender loving care) that I need when speaking with a doc. I'm doing this in a language that is not my mother tongue and plus with not feeling well it gets difficult to say the least. I feel like I'm missing something. I come with prepared questions but leave feeling like I missed something. There aren't alot of weggies here and I feel like it's just trial and error. Doing the waiting game to see how I progress. I lose patience sometimes want to be proactive and not waste valuable and precious time. But I guess there's no choice. I do blood tests every 2 weeks and see her once a month. Ent doc every 3 weeks. Always at a doc but in the same situation.

Be careful as much as possible with your son! My daughter also came back from her base with a bad cold.

[Alysia]

miss the tlc (tender loving care) that I need when speaking with a doc. I'm doing this in a language that is not my mother tongue

tlc=tender loving care :thumbsup: I like that :biggrin1:
I understand what you mean and what you miss.
it is not a matter of the concrete language but of the spirit, the emotions, the sense of caring....
the forum here is in English, which is not my mother language, still I am getting here the stronger and deeper tlc (tender loving care) ever.
here some for you :hug1::hug2:

[acker]

Hi Alysia,
I'm glad you enjoyed my ramblings, it does feel good to know you may have helped a little sometimes. :biggrin1:
Yes that is me, it's one of the photos that I had done for the agents that get me my TV / Film extra work. I've put a couple more on my profile I think, I still can't work this site very well, ho hum. :unsure:
I like your Avatar as well, vey peaceful and reminds me of home, I was brought up by the seaside myself. Acker

[Alysia]

Hi Alysia,
I'm glad you enjoyed my ramblings, it does feel good to know you may have helped a little sometimes. :biggrin1:
Yes that is me, it's one of the photos that I had done for the agents that get me my TV / Film extra work. I've put a couple more on my profile I think, I still can't work this site very well, ho hum. :unsure:
I like your Avatar as well, vey peaceful and reminds me of home, I was brought up by the seaside myself. Acker
wow, so you played in a film ? the pic looks like one...
my avatar is near the mediteranean. at the beach of the city of Haifa in the north of Isarel. and if you want to say Hi, you can see me in my profile :)
where were you brought up ?

[acker]

Yes I've been in several films and tv programs as well.
That is a lovely Avatar as I said. I just looked at your profile pic, mmm, very nice :thumbsup:
I was brought up in Burnham-on-sea Somerset, the south west of England. It's a place that lots of people go to on their holidays. :cool1:

[Alysia]

Yes I've been in several films and tv programs as well.

WOW, intersting. if and when you will feel like please share with us more about it. or send links.

[jakekell]

Anne,

I am now 16 years free of my cancer, but at times I would rather go back to that battle. I at least felt when all the treatments were behind me (in my case) that I stood a good chance of being alright. I was until this weggie stuff came a long, cancer is just the word that people understand/scares them.

Mary

[annekat]

Anne,

I am now 16 years free of my cancer, but at times I would rather go back to that battle. I at least felt when all the treatments were behind me (in my case) that I stood a good chance of being alright. I was until this weggie stuff came a long, cancer is just the word that people understand/scares them.

Mary Mary, thanks for that point of view. It takes someone who has been there to really know. I think that each person's cancer experience must be a little different, just like with WG. I'm glad you are cancer free for so long, hope it continues, and can understand why dealing with WG would be more of an ordeal for you at this time and could seem worse in many ways. So when they say "at least it's not cancer", that must be a little hard to take... little do they know.

[acker]

WOW, intersting. if and when you will feel like please share with us more about it. or send links.

Quite a long time ago I was in the film "Enigma" with Kate Winslet and Dougray Scott, in the background playing a Code Breaker. The latest films done last year were, "The Double" which is in the cinemas in England right now, it was a night shoot, we started at 8-00pm and finished at 3am, I played a biker in a fight in a bar, and an outside foot chase. The last one was called "London Fields" and that should be on general release this year, another night shoot, that was a bonfire crowd scene.

A couple of the Tv programes I have been in are "Eastenders" man in the background living rough under bridge arches, fighting with another man. And "Casualty" man in the waiting room of the A&E dept with my arm in a sling. Two Tv AD's a building firm and Mc D's.

So not quite a superstar, Yet !! Acker :rolleyes1:

[drz]

I was hit with the "not cancer" remark today... Was making special arrangements to pay my late power bill on an installment plan, and they are nice about that. But when I mentioned my potentially life threatening illness, I was asked, "does it have anything to do with cancer?", as apparently they give some special considerations to people with cancer. Weggies can have end stage renal disease, which is as bad as cancer, or worse. I don't, of course, and I'm glad I don't have cancer, but I get a little tired of people acting like cancer is the only really serious or incapacitating disease.

When I heard a similar remark, my response was no, I am not that lucky. They can often cure cancer. I have two chronic diseases (GPA and diabetes) that I have to work at managing daily while hoping some day for a cure. it is also a bit ironic that most of the research money goes into cancer but more of the health care money goes into caring for autoimmune diseases and diabetes than treating in cancer.

[Dirty Don]

it is also a bit ironic that most of the research money goes into cancer but more of the health care money goes into caring for autoimmune diseases and diabetes than treating in cancer.

I think that has a lot to do with awareness also. People want fixes for what they know about...for what they don't know, they 'care' for it until someone can find or stumble upon the 'fix' stage. Way it is...has always been...will always be............HEY! It's Sunday here and I missed my 'sermon'...I was finishing my coffee then on the golf course practicing...sighs...Walter Cronkite, where are you? OK, so I rant differently...sheesh...

[Alysia]

Quite a long time ago I was in the film "Enigma" with Kate Winslet and Dougray Scott, in the background playing a Code Breaker. The latest films done last year were, "The Double" which is in the cinemas in England right now, it was a night shoot, we started at 8-00pm and finished at 3am, I played a biker in a fight in a bar, and an outside foot chase. The last one was called "London Fields" and that should be on general release this year, another night shoot, that was a bonfire crowd scene.

A couple of the Tv programes I have been in are "Eastenders" man in the background living rough under bridge arches, fighting with another man. And "Casualty" man in the waiting room of the A&E dept with my arm in a sling. Two Tv AD's a building firm and Mc D's.

So not quite a superstar, Yet !! Acker :rolleyes1:

WOW, COOL :thumbup:
now we need a link to see you "in action".... :wink1:
maybe your next film will be something to raise awarness, like others are writing above here .... :unsure:

[jlove]

WOW, COOL :thumbup:
now we need a link to see you "in action".... :wink1:
maybe your next film will be something to raise awarness, like others are writing above here .... :unsure:

I have a friend who graduated from USC's film school in Los Angeles. He's made two documentaries since graduating... I've thought about talking to him about doing a documentary on Wegener's or maybe auto-immune conditions in general. He's extremely talented. I feel like I need a good pitch. He usually raises money for his films via crowdsourcing so we would need a good idea. My only idea so far is to travel the world (or maybe America depending on the budget) with my friend and his crew to meet people with Wegeners to record their stories.

These are the things I day dream about at my desk job haha

[Alysia]

I have a friend who graduated from USC's film school in Los Angeles. He's made two documentaries since graduating... I've thought about talking to him about doing a documentary on Wegener's or maybe auto-immune conditions in general. He's extremely talented. I feel like I need a good pitch. He usually raises money for his films via crowdsourcing so we would need a good idea. My only idea so far is to travel the world (or maybe America depending on the budget) with my friend and his crew to meet people with Wegeners to record their stories.

These are the things I day dream about at my desk job haha

I have some scripts :wink1: all based on reality....

[acker]

Hi, Sorry I have'nt any links showing me in action, as all rights belong to the companys I work for :sad:
But when ever I'm working, I will try and push awarness with the production people, well it's worth a try :hug1:Acker

[acker]

Hi, I've just been talking to Alysia, about my Tv / Film work, and although I don't have much weight in the industry, I will try and push more awarnesss while I'm working with any production people etc. Acker :smile1:

[Alysia]

Hi, I've just been talking to Alysia, about my Tv / Film work, and although I don't have much weight in the industry, I will try and push more awarnesss while I'm working with any production people etc. Acker :smile1:

Thanks Acker,
If I let my imagination go wild.... :wink1:
then.... we can def do the most touching movie, blockbaster, about our Forum...
we have all the features of best seller:
unknown scary illness :confused1:
fighting for life and death :w00t:,
life, and unfortunatly also death :crying:,
friendship and kindness :hug1:,
love :love: ,
and of course our stars, good looking weggies :hug3:

[Alysia]

:lovethisthread:

[LisaT]

thank you Cindy. you are sweet and kind to me. I have "thin skin". I can't be otherwise.
wonderful supportive people are just here, in my weggie family :wub:

i have a theory that what you refer to as thin skin and I experience as hypersensitivity actually predispose us to AI issues. All my life I've been more sensitive and more easily affected by stress, emotions, other people, etc. than those around me. I have three siblings, we all share the same genes and grew up in the same household. They are all healthy; one sister, probably the second most sensitive, has some similar pain, TMJ and sinus troubles but thank goodness no AI disease that we know of... I, the sensitive middle child who was traumatized by 'normal' levels of dysfunction (parents fighting, some yelling, mom occasionally having a pms rage and throwing a few things at a wall or crying... Nothing worse than the average child would witness and certainly no abuse or serious illness or mental illness in the family) am on my third autoimmune inflammatory disease at the ripe old age of 45... I'd be interested to know how many others in this forum feel they are more sensitive/empathetic than the average person and whether their sensitivity resulted from or preceded their illness. I have described myself as a sponge who goes through life absorbing other people's stress and negativity. I'm trying to learn how to put my guard up and refuse to take it in.... I'm already carrying around more than my share, thank you very much...

[LisaT]

I don't need or want sympathy for how I'm feeling, but would like people to understand. I have many complications with WG and other illnesses that cause pain etc. But the one thing that is more debilitating than anything else with my illnesses is the chronic, severe fatigue.
My children are now young adults and I really want to be setting a good example for them with good work ethics. My 17 year old just wants to sit and play computer games all day and neglect his studies and the elder 2 (both early 20's) thankfully have jobs and are working, but constantly complain about working 40 hours and believe that it's too much.
They were too young to remember the 60 hour weeks I used to work when I was their age even though I'd already had a few relapses of WG. The relapses and damage to my kidneys eventually caught up with me and I'm no longer working.
It's so hard to try and motivate them when they see me spending a lot of my time sat down with no outside appearance of how ill/tired I feel.
They don't seem to understand that if I do a simple job like empty the dishwasher, I feel as tired as they do after a 10 hour shift at work.

On a financial perspective, in the UK at least, claiming benefits is hard when you explain your main disability is fatigue. It doesn't seem to be considered debilitating. If only they knew........

When I first had to apply for disability, my dr. actually used the phrase "debilitating fatigue" to ensure that the level of overwhelming fatigue was understood. Sometimes one has to spell things out for people. I explained in the application that I was pulling over to a shady spot on the side of the road for a nap after drs' appointments before I could go pick up my kids from school, etc. The worst is when you try to explain to someone who is well and they chime in with how 'tired' they are too... I know they don't realize they're minimizing our experience and can't possibly know, but it makes me feel like they see me as whining over nothing.... I know exactly what you mean about trying to set an example for your kids without pushing yourself more than you can handle. I need a lot of help around the house and sometimes have to just 'check out' into bed and let my hubby handle everything. I've noticed my six- and 10-year old sometimes just decide they "can't walk" or have a tummy ache when they don't want to go to an activity or commitment. I've talked to them about crying wolf but also want to give them the benefit of the doubt and let them gauge what they can and can't do, as I expect others to let me. Still working on the balance here and explaining my illness so they understand that there's more to it than meets the eye, but short of scaring them. It sounds as though yours are old enough and mature enough to understand if you explain the hidden insidious effects of your disease?

[annekat]

Lisa, my mom always used to tell me I was too sensitive for my own good. I don't know how a comment like that was supposed to help me in any way. But she was a kind and good person subject to all the shortcomings that the rest of us humans have. I and my sibs also had to put up with the parental fighting and arguing, which escalated along with alcohol consumption in the evenings. I was also painfully shy at school and had stress from other kids belittling and psychologically bullying me. Things that a lot of kids go through, but they do take a toll. This has been gone over on the forum many times, but just wanted to empathize with you and acknowledge that that kind of stress plays a role in illness.

Back to the topic at hand, looking or feeling sick, or not.... yes, the fatigue thing is ever present for many of us, and I don't know if people are trying to minimize it by saying they also are tired, or if they are trying to empathize. But it has the effect of minimization, because they will have no idea what it is like for us until they get something like this themselves. I am recently recovering from what seems like a minor flare, but the fatigue just lately has been worse than it has for a long time. I just have to go with it and rest when I need to, because I know that pushing myself will just make it worse. I don't even have children to take care of, and never have, so can't imagine having that dimension added to it... I'm glad you have a hubby who pitches in and helps.

[Alysia]

i have a theory that what you refer to as thin skin and I experience as hypersensitivity actually predispose us to AI issues. All my life I've been more sensitive and more easily affected by stress, emotions, other people, etc. than those around me.

I have described myself as a sponge who goes through life absorbing other people's stress and negativity. I'm trying to learn how to put my guard up and refuse to take it in.... I'm already carrying around more than my share, thank you very much...

Thanks for sharing. I am also very sensitive, I can feel people very easily, but it is not bad for me. it is ok for me to feel whatever. I made my career with it. (working as psychologist).
I think that there are many sensitive people who are not sick. some are menatlly sick or disturbed. others are artists.
maybe we are "lucky" to "catch" it in the body ? who knows....
please check this thread, you might find it interesting : http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3879-our-private-hypotheses-about-our-wg-etiology.html

[LisaT]

Thanks for sharing. I am also very sensitive, I can feel people very easily, but it is not bad for me. it is ok for me to feel whatever. I made my career with it. (working as psychologist).
I think that there are many sensitive people who are not sick. some are menatlly sick or disturbed. others are artists.
maybe we are "lucky" to "catch" it in the body ? who knows....
please check this thread, you might find it interesting : http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3879-our-private-hypotheses-about-our-wg-etiology.html

I started reading that thread and will add to it at some point. Right now I'm bouncing all over the map! :blink: Looks interesting, thanks!

[Titus3:2]

Alysia,I read a book about 1.5 years ago Why Zebras Don't Get Ulcers third edition.It was very interesting.Have you read it.If so what did you think of it.Sorry,I am not trying to hijack your thread.

[Alysia]

Alysia,I read a book about 1.5 years ago Why Zebras Don't Get Ulcers third edition.It was very interesting.Have you read it.If so what did you think of it.Sorry,I am not trying to hijack your thread.

I love Hiijacking of a thread :wink1: some playfulness....
I googled that book: Why Zebras Don't Get Ulcers - Wikipedia, the free encyclopedia (http://en.wikipedia.org/wiki/Why_Zebras_Don't_Get_Ulcers)
looks intersting and relelvant ! thanks :thumbup:

[LisaT]

Aha! Here it is, from the Wikipedia discussion of the book: chronic stress occurs in some social primates (Sapolsky studies baboons) for individuals on the lower side of the social dominance hierarchy. Perhaps we are the baboons on the lower side of the social dominance hierarchy?!? :wink1: Kidding aside, it makes sense that chronic stress would lead to chronic physical problems... It mucks up all of our hormones, kills the adrenal glands which then causes debilitating fatigue... Now someone needs to help us figure out how to reverse the process. I still wonder why one person in the exact same situation is more vulnerable to experience the same context and events as chronic stress while things roll off the backs of others. Just the luck of the draw, I guess. We are special!

[Alysia]

We are special!

aw, yes, we are rare :wink1:

[LisaT]

On a related but slightly different topic, how do you all answer the standard question, "how are you?" Or "How are you feeling?" I struggle with this one. For acquaintances or people I don't know, I flat-out lie: I'm fine thanks, how are you? When asked by people who are 'slightly aware' that I have an illness or two but don't know details, I keep it short but aim for something relatively closer to the truth: I'm ok; or, not too bad, or so-so. That feels like I'm asking them to ask me to elaborate though, and I don't necessarily want to, I am just tired of lying and pretending to be okay when I am not. When a closer friend or someone who seems to genuinely care asks me, I am honest but very brief: today is a good day, or I have a headache, thanks for asking. When a family friend yesterday asked me if we've all been well, I was stumped for what to say. The kids and hubby? Yup, all well. Me?!? While I wAs up and about looking 'normal' if somewhat dishevelled, I was sitting on the bench at the driving range watching dean and the kids practice their golf swings when I should have been in bed. My sister in law is in town and I wanted to be with her, and the kids had two different activities preceding golf, so we had to divide and conquer in any event. I settled on vague honesty: "eh... Depends on the day. Making it through..." Or something along those lines. He looked uncomfortable and changed the subject. Hmmm. Would lying be better? Does he think I'm a hypochondriac or complainer? He's a really nice guy who generally wouldn't judge or minimize someone's experience. I guess I should just not care what others think, but that's hard. I sometimes wonder whether the friends I no linger hear from don't call because I 'don't look sick' so they think it's all a figment of my imagination. Now trying to decide how much to share with my family about the fact that I'm nauseous, lightheaded, headachey, and in pain, and don't really feel up to going out anywhere....I guess I have to tell them because I don't want to push it. How does everyone answer, how are you?

[Alysia]

how are you?
o.k. thanks :wink1:

[LisaT]

o.k. thanks :wink1:
No matter how you truly feel? I just find it so isolating when I don't let on to anyone how I really feel. It shrinks your world.

[Alysia]

No matter how you truly feel? I just find it so isolating when I don't let on to anyone how I really feel. It shrinks your world.

That's me. keeping my privacy. I am telling how I really feel only here, to my psychologist, and to 2-3 close friends. no more. even to my parents I am not telling how I feel, mostly in order not to make them worried. besides, it takes energy to explain. I am saving my spoons.

[vdub]

....it takes energy to explain
That is certainly the truth!

I usually say "its a daily challenge" and leave it at that. I used to explain, but as Alysia said "it takes too much energy". I think it is a rhetorical question for most people and they don't really want an answer. By saying "its a challenge", I'm telling them things aren't OK, but not worth a discussion. If they, then want to carry it further with a follow-up question and they genuinely seem interesting, I have no problem talking about it.

[Pete]

My usual answer is, "Not bad for an old guy!" That generally gets a chuckle and little else. However, many of you can't use that line...

[jvilner]

I've learned that everyone has their own bag of problems. They might want to hear yours but they are too involved in their own. Only a few close people will listen but then you'll need to listen as well 😉

[jakekell]

I understand what your staying. I am not sure that people really want to know "how I am" I think it is really hard then they can understand how I could be that sick when I don't look sick at all. There is just no really good answer for a lot of people that ask. I usually just say having good days/bad day/let it go at that.

I figure if they really are concerned they will do what some of my friends/relatives have done look up wegs on the computer, which is very nice of them. I wish more would do it and we all might hear less "you don't look sick"!

Mary

[annekat]

With acquaintances who know I am or have been sick but aren't necessarily thinking about it right then, since I don't look sick, I say "I'm doing OK", to remind them that there could be something going on. If I'm really feeling rotten that day, I generally let on that I don't feel the greatest, although it could be worse. With strangers, such as customers, I almost always say, "fine, how are you?"

[Alysia]

My usual answer is, "Not bad for an old guy!" That generally gets a chuckle and little else. However, many of you can't use that line...

sure, the girls can say: "not bad for an old lady".... :wink1:

[acker]

Hi Lisa, I have found a great way of getting over this challenge, I was exactly in the same situation as you, with friends and aquaintences, most people that ask this question don't expect an honest answer, they use it as a kind of greeting, not as an equirey. As a few others have already said, I have spent many hours trying to explain what our illness is all about, to others who don't understand, and it's very tiring. But I have found a great tool now for this, it's a wonderful leaflet produced by John & Susan Mills of Vasculitis UK, called "Understanding Vasculitis" I now just give it anyone who asks me "how are you" it's then up to them to find out, if they are really interested. So far I have had very positive feedback from them, things like "oh wow I didn't think you were as ill, as that illness leaflet tells me, do you need any help with anything. It's the best thing I have found so far. And I use it when I go for blood tests etc at my local hospital, as most of the staff don't have any idea about this illness. I hope this has been of some use to you ?
Take care Acker :hug3:

[Jaypfei]

When I worked at the package store on base I used to reply to the "how are you?" With the old Michelob commercial slogan..... Some days are better than others. Otherwise I've gotten pretty good at telling people I'm okay. As stated by others, people that ask me that question don't really want to know the answer. They ask out of curtesy and polite conversation. The only ones that ask in genuine concern are family and other Wegs.

[LisaT]

Thank you for the helpful responses! It's a catch 22 because people ask it as a greeting or pleasantly not really wanting a complete answer, but perhaps if they knew what we're really dealing with, they would care more. I will definitely follow Acker's example and provide more information (probably a link or email a PDF) to close friends or family who are genuinely interested. From now on, when someone asks in the, "I don't really care, just saying hello" tone, I'll stick with "okay", or "fine, and you?". It will spare me the puzzled, guilty or disbelieving (you're-kind-of-a-crazy-hypochondriac-I-now-want-to-escape-before-you-can-suck-me-into-a-conversation-about-your-symptoms) look, and spare them the discomfort of knowing they're avoiding caring or finding out. :w00t: For the real jerks, I'll respond "do you really want to know?!?".

[jakekell]

The is so true. I am a really good listener and when I say how are you to people had have issues I want to know/listen. This made me sad for a bit after getting so sick was those people really didn't want to take time to let me vent a little.

The ones that don't want to hear it get just fine.

[jakekell]

Well said I wish I could say that to some!

[drz]

Yesterday i had a lady i didn't know or recognize anyway come up to me at a celebration and say "Its really nice to see you up and around." My response was "It is great to be seen." I am guessing she knew I almost died four years from Wegs and knew my name but because of memory issues I don't always remember people or their names.

When others ask How are you? I usually respond with some thing like "I am still on green side of grass and walking around so I am doing good." I think they find that reassuring and I find it life affirming that I am still here and enjoying my life as it is now.

[pberggren1]

I have experienced the same thing drz. Sometimes I just can't remember someone.

My response sometimes is: I am still alive, therefore God is giving me a chance still.