help

[delorisdoe]

I am not sure how much longer I can stand this. My pains are getting worse day by day it seems. It is so much like when I was first diagnosed. The only difference is this time I know what it is. I always thought that it would be easier because I know what is causing the pain but I never thought about how if pain is my most pressing symptom than treatment is not an option for me. This is so depressing and really dragging on. sorry i know i promised not to whine anymore.

[Red]

I am sorry for your pain i did things that i can only say on private message.

[delorisdoe]

i accept any and all private messages.

[Al]

I am not sure how much longer I can stand this. My pains are getting worse day by day it seems. It is so much like when I was first diagnosed. The only difference is this time I know what it is. I always thought that it would be easier because I know what is causing the pain but I never thought about how if pain is my most pressing symptom than treatment is not an option for me. This is so depressing and really dragging on. sorry i know i promised not to whine anymore.

Leigh, I'm going to leave this comment up for everyone, because, though the observation is personal, your story might be something of a teaching moment for others.

I don't care a whit about your alleged "whining", pain is pain and, yes, it hurts, and sometimes you just have to moan and grunt and sniffle and shout. This is a form of therapy. But other medially accepted forms of treatment you have been outspoken about shunning, running--not walking--away from. Not so good, my friend. And rather counterproductive when a little discomfort can, in fact, improve the pain situation a lot. Yes, everything is a risk, but the potential benefits are there for the taking. I truly hope you can bring yourself to go along that road, if for no other reason than the scenery will be a pleasant change. You don't owe it to me, of course, but I think you do to your family--and, most of all, yourself.

Al

[delorisdoe]

I am not sure what you mean "outspoken about shunning". If you are refering to cytoxan I was on 150mg of oral cytoxan for 2.5 years and cannot go on that. No other options have been offered to me as it worked and until recently i have not needed much more than pred once and a while. Ok I did mention i run away from ent's but i have next to no sinus involvement so that is ok. I have an appt dec 15th I just have to figure out how to make him understand that i need something for the pain. I think 8-16 tylenol/advil is not ok.

They shoot horses dont they?

[maria garcia]

Leigh are you on medication? Maybe flaring? Please don't worry about shouting here, thats what we are all here for. Its hard for anyone else to understand. My heart is hurting and my nervous are out of control, my daughter now started with ear pain today, another Wegs symptom. I just want to cry. But I need to be strong for her. So Im virtualing screaming and crying .

[delorisdoe]

I am not on meddication right now. My doctors are waiting for me to need it for something other than pain but i think i cant wait for that any longer. Al is right it does affect my family , my job and myself. Maria I think it is maybe harder on mothers. I know my mother has a hard time dealing with mine and my brothers AI diseases-i hope your daughter lets you help her more than i let my mother help me. I am a bad patient I am afraid.

[Al]

They shoot horses dont they?

Not so often, Leigh. The first choice is repair. A fixed-up horse may never race again, but there are other fine equine activities. (Personally, I'm neither a runner nor a stud, but I hope to offer something useful for a while yet....)

Pred "once and a while" seems, to me, a goofy concept. The whole point of pred is to be a regular deal so long as you need it. Some types of pain reduction are less stressful than other kinds. I can't take any NSAIDs, for instance. Fortunately, I am relatively free of physical pain. (The psychic pain is another story.) Can you, in fact, last nearly another month for something? I said sometimes you have to moan, etc., not all the time!

Al

[drz]

Today most doctors and clinic accept pain is a real problem that requires some active treatment. It is not something that needs to be tolerated. Every time I go into a clinic they ask me if i have any pain and to rate it from zero to ten. Maybe you need to scream more at your doctors or shop or shop for some more responsive ones. You deserve some treatment to give you pain relief. Today pain is generally considered unnecessary on any long term basis and is usually aggressively treated when present.

[delorisdoe]

when i was first sick i had a really rough go of the joint pain. it was unbareable acctually. one of my employees at the time looked at me one day with a really sympathetic look and said "they shoot horses dont they?" I actually cry when I remember that. I had been in sooo much pain for sooo long and in one quick sentence he let me know that he could see what i was going through and that he felt bad. i am not good with sympathy and he rarely spoke unless spoken to so it has stayed in my mind for all of these years. I can go see my family doc if needed. im stubborn. I also wake up every morning and convince myself that today will be different.