The Long Haul

[jmmilliorn]

My friend who owns a mortuary has a saying he repeats when anyone says "Good to see you." to which he replies, "It is always better to be seen than viewed."

[Sangye]

My friend who owns a mortuary has a saying he repeats when anyone says "Good to see you." to which he replies, "It is always better to be seen than viewed."

ROTFL... Priceless.

[Lightwarrior]

I want to comment but I don't have much time before an appt. this morning. I want to talk about the good and the bad. Mostly I'll probably rant about the bad. In real life I don't get to talk much about that so here is the dumping ground for all the pain, dissapointment, anger, and lost hope. I could fill a Love canal with human misery. I've been sick for most of the past twelve years. There have been moments of not being really ill but they are few and far between. I have spent whole weeks laying on the floor of my living room in pain my life deteriorating around me. I have no spouse, no kids, no one that gives the back side of rodent how much I suffer or if I am just found dead some day because I couldn't drive myself to the emergency room once again or fight with doctors to get proper treatment.
Well, I gotta get to this appt.. You know , its frowned upon if I am late- if they are late , well I should just be gratefull to be seen at all by these healthy , capable people who haven't been out of work for the past twelve years. They have it tough you know jamming in people like me to keep all the numbers up.
I"m on pred reduction. You may have noticed it has affected my mood and my usual pleasant demeanor. I"ll try and come back and complain some more later.
I do want to thank everyone who has supplied information, and encouragement here. I remember that too.

Please let us know how your vist to the ED went. Is your pain better?? This is a great place to vent. Caring relationships can be formed in cyber-space and you are cared about.

[ScreaminMeanie]

LOL, that's a good one, Mike!

[jmmilliorn]

LMAO, too. Gallows humor sort of, huh? You have to have an incurable disease (or own a funeral home) to fully appreciate the not-so-subtle nuances of the joke.

[vdub]

seen vs. viewed.... Yeah, that's not bad...

I don't why I thought of this, but how many times has someone said to you "you'll be fine, I know you will, you'll be better in no time"? Uh, yeah, sure, whatever.... I know they are just trying to be nice, but I sure get tired of hearing it. Someday, probably when I'm on some extra steroids and in one of those moods, I'm just going to say "no, I won't get any better, actually, it will get worse and, eventually, if the disease doesn't kill me, then the treatment will"......

[me2]

Thanks Sangye, I know things have been very difficult for you of late and even though I haven't written about it you are in my thoughts and prayers. You are someone who gives so much here in spite of your own difficulties, you are truely deeply inspiring. I know what it costs you some days to even show up - Bill Gates couldn't afford you. Thank you.

I'm not going to rant anymore for now. I am feeling better after seeing my Jungian Analyst today. (and getting a tooth pulled today at the dentist. They give me drugs which are just now taking effect. The sore tooth wasn't helping when I made my self-pity manifesto this morning. The pulling went well actually. I have a fantastic dentist and his team. We all know how much difference the right practioner makes)

I talked to my Analyst about my post this morning and the effects of pred and the effects of pred reduction after long term use.
He pointed out that some of the 'rage' sometimes needs to be said and reminded me that I could appologize for anything in excess of appropriate. I still want to deal with things as my best self. With pred I am sometimes not my best self (I cannot use the proper adjectives in polite company) Part of me is thankful for the opportunity to have such a worthy opponent and thankful to learn some humility I might otherwise have missed.

I know its been said here before but the right kind of therapist type person to talk to can really be helpful. It surprises me almost every time. Seriously. I go there sometimes thinking "I'm going to quit going. I'll have to tell the poor fellow that this is my last visit." And then I have this awesome session where I feel like I gain so much, so , a stay of execution happens.
The irony is that my insurance, which denied me life saving treatment as I went through their entire appeals process - three levels , including a phone conference (while extremely sick) -- pays for my Analyst. No problem. Talk about ME being crazy.

Thanks for the hugs Sangye. Right back at ya. I hope I get to meet you in person some day. Take a deep breath if you see me, cause I'm going squeeze ya hard.
I hope to meet many of you here. I don't post a lot but I follow your stories. I feel what you are going through and I want you all to get better. I am humbled by the high quality of character I find here and I feel blessed. I went seventeen years without meeting or talking to another person with WG. Then the internet was invented. And now I am not alone any more.

[me2]

I think it is like Tommy Lasorda said: " I found out that it’s not good to talk about my troubles. Eighty percent of the people who hear them don’t care and the other twenty percent are glad you’re having trouble." Tommy LaSorda, LA Dodgers manager

Thanks drz, I love a good joke and that is a really great one.

[jmmilliorn]

I know what you mean VW. Unfortunately, I thought I'd be fine, too when I first got sick. I think that's what upsets us most even more than their wishful thinking. We've already realized we won't and they can't understand unless they get WG, too.

seen vs. viewed.... Yeah, that's not bad...

I don't why I thought of this, but how many times has someone said to you "you'll be fine, I know you will, you'll be better in no time"? Uh, yeah, sure, whatever.... I know they are just trying to be nice, but I sure get tired of hearing it. Someday, probably when I'm on some extra steroids and in one of those moods, I'm just going to say "no, I won't get any better, actually, it will get worse and, eventually, if the disease doesn't kill me, then the treatment will"......

[drz]

My friend who owns a mortuary has a saying he repeats when anyone says "Good to see you." to which he replies, "It is always better to be seen than viewed."

I have heard this many times that it is nice to see you. I understand what they mean since i feel fortunate to be walking around this year. My usual response is "Its good to be seen" along with some comment about being happy to be here. Or being seen is better than the alternative.