cfbjab -- RE: [mail] New at this

[Guest guest]

ok, fellow group members, i for one do remember cfbjab's first post -- subject line "new at this" -- which my computer received this last wednesday night. trouble is, i wasn't breathing at ALL well that day and truly didn't feel up to anything right then, including the computer, much less serving as a one-woman welcome wagon to newcomers (sorry, cfbjab. sometimes i can sit at the computer and type a lot, especially if i am hyper from drugs and with my mouth affixed to a breathing nebulizer, and sometimes it's all i can do to just sit and try to breathe, and do nothing else. wednesday was one of "those" days.). if you care to check, you'll see that my activity for that day was NO activity, no postings, period. i shouldn't even be sitting here now... but i felt awful, cfbjab, that you felt ignored, upset and hurt.

and the fact is, although we DO have a moderator for this group, she's a very busy new mother... and her co-moderator pitches in when he can, but whose to say he might not be having a few bad days, physically speaking? we don't have certain people acting as "official greeters" as far as i am aware. also (i know this sounds like i'm making excuses or passing the buck... i'm not, just painting a bigger picture of behind-the-scenes of which some newbies may not be fully aware), several posters have experienced and shared recently that they have NOT been receiving any of their yahoo group mailings... another poster's computer recently crashed, and she's only just now back up and running... a few others had been feeling quite ill and are as a result just now playing catch up with as many as hundreds (yes, hundreds) of postings. or they are (as is the case with psc) *e-x-t-r-e-m-e-l-y* fatigued, fighting their own disability appeals, etc. mom peg, a caregiver to her PSCer husband, is a first-rate greeter to newcomers... but she also happens to be battling monumental physical pain from her own fibromyalgia, et. al. (and i see that she just did make a welcome post! way to go, peg!)

my point is, many people who act as greeters have their own physical situations going on that preclude them from always being able to bestow the perfect greeting to a new member. when i don't feel well, this computer is the last place i want to be. other times, like now, when i'm not feeling well but have to take a breathing treatment, sitting here with my mouth affixed to a machine and dual tasking with a post seems, well, doable. that's just the way things are sometimes... it's best not to assume anything until you have all the facts in front of you!

i can certainly appreciate that you felt slighted, cfbjab, but please, as cheryl just suggested to you, if you would show us some grace in this situation, please, do forgive us, and post again... and this time, give us your first name (or a nickname... so we know how to address you?) and tell us more about yourself. you're in the medical field, you say? how old is your husband? what does he do? how symptomatic is he (or isn't he?) have you been married very long? any children? there have been PSCers agonizing about whether or not to buy that new home... go on that vacation... or even conceive a child. we in the group do what we can to help PSCers come to recognize the life philosophy held by some... that you do best to live each day as if a passing wayward truck could slam into you and it's that, not PSC, that takes your life. with that philosophy in a firm grasp, then there's an improved chance that you're living your life to the fullest of your abilities (even if your abilities become more and more limited), loving life, cherishing your loved ones, not taking things for granted, etc.

is there a different way to explain what i just said? i'll try: while i was wondering about the effects of debilitating PSC on my husband jim, HE was wondering about the debilitating effects of my chronic asthma on ME. and as it so happened, i beat him to the punch with my 9-1-1 in january of '01, when i came extremely close to dying... me... me: the ambulance came for me, not for jim. c'est la vie.

but oh, how i vividly remember those early, scary, just-freshly-diagnosed days! when my husband refused to talk to me about ANY of it!!! it stressed our marriage nearly to the breaking point... we even saw a Christian divorce attorney (i know, i know, that sounds a bit oxymoronic, doesn't it?), one of the worst-ever days of my entire life... and jim's refusal to talk to me about his illness(es) was a big reason why i looked to the internet for help... and eventually found a group for pbc. a kind person there re-directed me to this psc group, and as paul harvey says... now you know... the... rest... of the story: my husband jim was transplanted 12/7/01, thanks to our oldest of three children, our son jason. and now, jim gives credits me with much of what i did to help him in his process, being his medical advocate, fighting his insurance fights, keeping track of his questions for the doctors, seeking paracentesis a week before his transplant when he was extremely uncomfortable from ascites, etc. yep -- that means he talks to me about things now... and that's a very good thing.

you say you realize you have to change your (negative) thinking. i would agree, in that attitude IS everything. and of course it's true your husband is going to need your support -- every PSCer needs support, and believe it or not, for some, this group is their ONLY support system! -- but the thing is, understand that you and your husband have just been forced to board a roller coaster ride that you never asked to get on in the first place. it's a progressive disease, so there will be ups and downs, good days and bad days, pain-free days and days with perhaps itching from hell, or fatigue the likes of which you've never known. i hope to God you never have to see your husband in excruciating pain like i saw jim experience, with his massive cholangitis attacks. and i haven't even touched the subject of caregivers, who have their own unique set of needs!!!

and psc is unique, in the respect that it can hit several people quite differently. you talk about quick disease progression, however my husband had psc for 18 years before his transplant... far more years than the norm, and shoot, he never had any (what some feel is the time-buying procedure of) stenting. others in the group beat that record... have had PSC for 20-30 years. i'll go out on a limb anyway, though, and say your husband has NOT received a death sentence... you could instead view this as a diagnosis for a condition which to date has no cure... only various treatments. if PSC were in fact a death sentence, then my husband would not be here today to tell his tale (through me). it's perfectly normal to wonder about your husband's fate...

still, you need to take one day at a time -- or an hour or even just a moment at a time, if it's too difficult to deal with things on a day by day basis. there's only one way to eat an elephant, cfbjab, and that is one bite at a time. ok, so you've been reading up a bit on your husband's diagnosis. good -- that means you took a bite of the elephant. and you found this group... great, that's good for another bite. don't be too hasty to leave us, though, because there are lots of extremely knowledgeable people in this group who are willing to share their expertise with those in need... about doctors, hospitals, procedures, tests, vitamins, symptoms, medical studies, drug therapies, you name it.and PSC is certainly an elephant of a disease... but it doesn't *always* have to overwhelm or depress you. that's what you're feeling right now... today. and those feelings ARE valid. do know, though, that feelings jump all over the map... so your feelings you "visit" today won't necessarily be where you'll be living.

we're NOT a perfect group, and we're NOT perfect people... but for what it's worth, i sincerely believe we ARE here for you.

my apologies for the long-windedness... but it sure took up all my time on the breathing machine, so i'm happy about that.

all the best to you and your husband, cfbjab. i'm glad you found this group, and i hope we can be of some help to you.

maureen

-----Original Message-----From: cfbjab Sent: Wednesday, March 19, 2003 7:37 PMTo: Subject: [mail] New at thisHi, I am new this site and don't know what I should do. My husband was given the diagnosis of Sclerosing Colangitis from the GI Dr at Mayo this past Monday. Everyting I have read is not very encouraging. In fact is very depressing. I am worried about how fast this disease will progress and what his fate will be. A friend tells me that my negative out look comes from my own medical back ground. I think she is right. And I know I have to change my thinking. Any words of encouragement??

-----Original Message-----From: cfbjab Sent: Friday, April 04, 2003 6:52 PMTo: Subject: [mail] You all seem so nice.Gee when I found this support group online I thought that I had found something that would help my husband and I through a tough diagnosis. Now I am beginning to think that I was wrong. I see all the support you have given others that are new to this site but have not said anything to me. Makes me think that maybe I was wrong to think that you all would be of help understanding and working through PSC.