Thanks, you are so right about never hearing of this disease before, I guess I too need to be more understanding of them. I have dealt with depression for over 20 years so thankgoodness I do have a therapist and psych that I trust and see regularly.
Likes: 0
Registered User
Thanks, you are so right about never hearing of this disease before, I guess I too need to be more understanding of them. I have dealt with depression for over 20 years so thankgoodness I do have a therapist and psych that I trust and see regularly.
Registered Member
Limited is a misleading and worthless misnomer in my opinion but it is a term physicians use to describe what organs are under attack by the Wegener's (GPA) but has no bearing on how difficult your treatment may be. I think they would have been better off doing away with the term "limited" instead of changing the name of Wegener's to GPA.Originally Posted by elaphe56
Glad you have some good mental health support to help you.
Registered Member
Welcome to the Forum
~ Bob
Registered Member
Registered Member
That's so funny Sangye. I wish Chris was on here now to say ....GottchaLOL I'm a she.
Welcome to this wonderful site elaphe56 and yes, Sangye is the wise one.
Keep Smiling
Michelle
Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS
Registered Member
LOL! Sangye is not the wise one. But she is a she. That part's true!
Richard
Oh my wise friend...LOL! Sangye is not the wise one. But she is a she. That part's true!
Where ignorance is our master, there is no possibility of real peace....or for the matter "The She-ness" in our great forum!!
Dalai Lama
Registered Member
Registered User
Kathy--Your plight, sadly, is not so uncommon. I mean, the “broke busted and disgusted” part. In many cases the “unemployed” bit as well. (I have my own partial workaround, so to speak, for that: I am a freelancer, so I can’t be fired, though I can lose a few clients of they decide I am too sick to service them properly.)
Your family situation touches a nerve with me. I hasten to point out that I have the most supportive family in the world, though it is fair to point out that “supportive” is not the same thing as “understanding”. That is a trickier issue. I think that one can be supportive without really understanding, but the lack of empathy almost always translates into some form of denial. So, in some cases, does too much empathy. A disease like Wegener’s imparts a very heavy load on it’s sufferers. For family and friends, this “load” is too easy to interpret pejoratively as “baggage”. In any case, not everyone is interested in, or capable, of sharing the burden. How this plays out varies a lot. Sometimes, it in is active denial: “You can’t possibly be sick.” Other times there is a kind of desperate Pollyanna-like enthusiasm: “You might be sick, but you’ve got to act as though you aren’t!” (This more or less describes my wife’s MO). In the worst cases, the sufferer is marginalized. This is bad whether the marginalizers are family, friends, or professional associates and customers. I have a client who had heard that I was “seriously ill”, and assumed, without calling me, that I would be out of commission. So when I showed up for the gig--for me a booking is a booking until officially cancelled--I found my replacement already moving in....
Still, in a way, I understand the problems from the families’ points of view. Samuel Johnson, reputedly, noted that “nothing focuses the mind like a hanging.” Well, we here have all felt the noose around our our necks, and are very focused on our situation. Internalizing this ever-present sense is very difficult for those whose necks have not been reddened by the rope. So, Kathy, I would say that those who have not faced the gallows are unqualified to determine how serious your situation is. But it is understandable that they can’t understand!
As far as stress is concerned, I understand your point. But you are not alone in an unfeeling universe--not when you have use to vent to! Rage is good, when directed. Thanks for sharing!
Al
Registered User
[QUOTE I never expected at age 44 to be where I am ...but it is what it is and atleast I am still alive...so try and keep your chin up...[/QUOTE]
LisaMarie--
Serious health complications complications can come at any age. I am lucky that we got our kids raised before I nosedived (actually, it was more the kidneys). But bringing this up, as you do, is important, for several reasons. First is to observe that there are those who have faced life-threatening situations, and those who have not had to face life-threatening situations yet. Secondly, no matter how old you are (even if one is, like me, in the geezer class), it is critical to feel useful and able to be a full participant in life. This does not require perfect health, but it does require a large universe with a lot of wormholes, a lot of unlocked doors. But this is a time that one feels that more and more doors are being slammed in our faces (in addition to those traditionally slammed due to the fact that the young and healthy can get there fastest and first!).
So, yes: keep your chin up. But if you feel it dropping, give us a shout. We'll give you a shout-out!
Al
Posting Permissions
Reply With Quote
Bookmarks