This and That…
AnonymousOctober 5, 2009 at 7:17 am
well, not much to update really. after the stem cell harvest, i was pretty drained for a few days. each day i feel a bit stronger and more rested. i’ve been sleeping 11-12 hours a night… i guess the whole week of neupogen leading to the actual harvest took more out of me than i realized. i always seem to think and act, like a reflex, as though i am not sick– then my limitations kind of smack me in the face…
i was a little down yesterday. although i am thrilled when sophie goes out and enjoys some aspect of life– yesterday she went out with a friend of mine (she’s never met her) — they went to a museum and for a jaunt around downtown… also, a cousin of mine was in chicago and stopped in for a visit– then headed off to meet friends for shopping, lunch, etc… i guess i just get down sometimes when i see how much my life has ended up on the sidelines… of course i see this more when people around me are partaking in life, as they should, of course… here i am in chicago– this awesome city– and i am primarily confined to this apartment we rented. going out for a lunch or breakfast puts me in pain and exhausts me– i still do it sometimes, but, well, i think you get it…
i’m better today.
these next couple of weeks, prior to my admittance into the hospital for the big chemo and stem cell reinfusion feel like an eternity. and i struggle with doubts. not doubts about going through this procedure, doubts about — will it really work?! will i have my life back?! or…
so in all of my spare time cubed, i played around with the results from my post: what do you think caused your got cidp/gbs. i even made a pretty table to show, however non-scientifically, the results. unfortunately, i can’t seem to post it. i used pages from mac– and as a link, the forum won’t accept it. then i saved it as a word doc– the forum said it was too large… does anyone more techy than me have a suggestion?
also, i’m deeply concerned about the vulgarity on the forum as of late. i’m no polly anna, been a cop for years… but for the more sensitive, as well as for the sake of integrity, i hope we can come together as a collective and, not placate nor apologize, but rather to condemn rage fueled profanity as unacceptable in this special place where people need to feel safe. gosh, it’s beginning to resemble a townhall meeting on healthcare. we are not each other’s enemies nor should we be anyone’s whipping boy. i’m curious how others feel…
AnonymousOctober 5, 2009 at 9:55 am
It’s understandable that you would have your down days and doubts at times.
Your a strong person with great support from your Sophie and all of us here on the forum who feel privileged that you have shared with us your journey as you go through the stem cell process.
I agree that not only is profanity unacceptable but undeserving accusations toward others is also unacceptable.
Praying for you.
AnonymousOctober 5, 2009 at 10:53 am
[FONT=”Georgia”][SIZE=”2″][COLOR=”Sienna”]Hello, Alice …
Yes, I agree there will most surely be “down days”. I’ve admired your grit and determination. But I also admire your ability to let guard down and post some of the hurtful and depressing things.
That’s called ‘being human’ and bless you for posting up times and down times.
Yes, I see where the profane post has been lost. I’m glad to see it’s gone. Not that I’m so prudish. I did, after all, work in docs’ offices and hospitals for 30+ years. No way to be shocked after that, gotta’ tell ya’. 😀
Fight on, Kiddo !!!
BTW, I am [U]so[/U] glad to finally see the Alice and Sophie I’ve grown so fond of.[/COLOR][/SIZE][/FONT]
October 5, 2009 at 1:48 pm
35 years in the military and I have heard it all. But this is not the place for vulgarity or accusations.
This is a place for support, comfort and strength, and information. Let us keep it that way.
Hang tight Alice. There are better days to be. All will be well and all will be well.
AnonymousOctober 5, 2009 at 2:20 pm
I think it’s appropriate to ask questions if/when we get confused by someone’s stories. I know it’s hard for me to keep everything every one has posted straight.
I also think it’s ok to question another posters diagnosis, respectfully of course. I think most of us have done that at one point or another. We’ve seen many people come through here who have been mis-diagnosed over & over. I’ve been a part of this board for almost 4 years & I cannot tell you how many people have been told they don’t have CIDP, only to find out after months of testing that they do indeed have it, or to be told they do have CIDP but that diagnosis gets changed after more tests are run.
I do not think it’s appropriate to use profanity on this site. I emailed the GBS/CIDP Foundation & asked them to remove the post with profanity. It doesn’t belong here. Emily reads these boards daily with me because she needs to see there are others out there who have CIDP too. I don’t swear around her & I don’t want her to read it. It’s bad enough she saw a commercial & now knows what the “b word” is. (I almost had a heart attack)
We can have our differences, we aren’t all always going to get along. And even if/when someone says something that upsets you – you need to learn to walk away. I know when some of us come here, we are coming under stress & certainly may not always be at our best. But it is important to retain as much respect & courtesy as possible.
I know I’ve had some harsh words come from me in the past & I learned from my mistakes. I hope others will learn from my mistakes as well.
And remember, with this form of communication there are bound to be mis-readings. It’s difficult to “read” what a person is really “saying” sometimes. Sometimes things seem they are written much harsher than what they were intended.
Alice – I hope you get some rest. It sounds like that’s what your body really needs. It must be difficult to feel cooped up but know that it’s what is best for you right now. Hopefully this process will work & before you know it you will be back out on the streets fighting crime.
October 5, 2009 at 2:42 pm
You have all the strength and stamina necessary to deal with this journey filled with unknown parts and bumps and rough rides along the way. We are all expecting the best outcome and remember we are with you all the way.
I notice that your abundance of brains are always working no matter what aren’t they? You organized tables! Could you possibly post your tables in small sections? No techie here, but I’m eager to see your work. I hope someone can help make it happen.
I’ve been going back to the months before my health took a turn. Nothing significant surfaces right now. I’m still sorting things out. It’s exciting to know that you have a book in mind. I’d be willing to participate with any useful information, my future outcome or interview questions.
As for the not so nice language: When Emily’s Mom posted about her 7yr old reading with her that reminded me to be careful about my language and it also reminded me that anyone can get this disease at any age.
I know you’ll keep that spirit up and You deserve a basket of sweet flowers if only in thought!
AnonymousOctober 5, 2009 at 5:41 pm
well, sophie and i at the airport hoping to fly standby to get home to san francisco!! i asked the doctors if they would mind if we went home for a while since things don’t begin till oct. 20th… they said yes 🙂
i can’t tell you how happy i am to see my dogs… they are truly our children and web-camming has been insufficient:rolleyes: i need some wet kisses…
i do feel better today and thank you all for your comments.
be in touch soon–
AnonymousOctober 6, 2009 at 9:26 am
Hope you have a great trip! Thanks again for sharing your recent “journey” with us. It has been enlightening as we are all anxious to see the results but I’m sure no one more than you! The time away from the hospital environment is probably the best medicine! Take Care,
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