Things That Make You Want To Pull Your Hair Out!

[Mini Mia]

Mom saw one of her doctors on Wednesday, and he doesn't like her blood count. He's going to check it again in a couple of months, and if it hasn't improved, she will have to do dialysis. December/January, she'll have surgery to put a tube in her stomach, and when that heals she'll be taught how to use an at home machine. She hooks up to it at night while she sleeps. I've been told I'll have to learn how to set up the machine and hook it up, etc., along with Mom. They want another person to know how to do it in case Mom needs backup. My sister may also learn how to do it as well.

Mom told the doctor she usually went on trips at least once a year, and would she still be able to do that. The doc told her that she could take the machine with her. He said that with her attitude and outlook, she shouldn't have any problems adapting to this. She said that she learned that from her Mother. From the time she was a small child, her Mother always told her that she could go through anything that life threw at her, because someone else had already gone through it before her.

The doc said that she'll most likely have more energy, with the machine taking some strain off of her kidneys. More energy is what I have been praying for for her for a few years now, so I guess this is an answer to my prayers. Although, I'd have preferred her to get it in a more natural way. I had wondered a few times over the last few years if dialysis once or thrice a month might not help give her more energy. Her cousin, who also has WG, lost half the function of her kidneys and did dialysis once a week. I think she does it twice a week now. She got WG several years before Mom did, and has been on dialysis pretty much ever since. I know dialysis isn't a death sentence, but it does depress me a bit. I guess it's because Mom has always been such an active person. She always had a garden every year, and she still gets out and mows the yard ... drags limbs behind the mower to stack in piles to burn when the weather is just right. She's usually always outside doing something or other ... even now ... even though it drains her to exhaustion.

So, while I'm praying she won't need dialysis, I'll at least hold out hope that if she does need it, it'll help her maintain her activity, and even help her to be more active than she had been in the last few years. She hasn't given the naysayer this bit of news yet. She asked another friend why she thought this person felt she shouldn't be doing anything, and why she acted like she was dying. The friend said it could be because the doctors had said that Mom would never get any better than she already is right now. (WG causes damage that can't be repaired, for the most part. Such as with kidneys.) Which, I never expected her to get back to the health she was before the WG ... but that in no way means she dying. I mean. We're all dying ... but WG isn't always a death sentence like a lot of other diseases. Like with some cancers, a person with WG can live a long, somewhat healthy life until they die of natural causes, or of something else. Now, WG can be a death sentence in a lot of cases, but that's usually because it caused too much damage before it was diagnosed.

Okay. This stuff gets me to rambling. I guess it's my way of dealing/coping. Actually, I think this upsets me more than Mom. I think I have my Dad's moody/depressive attitude/outlook. I should try and take on hers. It's the only thing in this situation I have control over.

[Phalon]

Ramble away, Joxie...it can be a good way of coping and relieving some of that pent up stress. It's great your Mom has that postive outlook; it sounds like she's one tough cookie.

Keeping you both in my thoughts.

[stepper]

Post on Joxie! I can't do squat to fix it, but I can listen.

You may be right about this bothering you more than your mom. My mother just played the cards dealt to her while I was off to the side fussing. I have no idea what made me think I had any decision making authority - but I got through the phase quickly enough it didn't strain things at all. Moms are amazingly tough people - which we'd understand better if we remembered what we were like when we were young and that they still managed to raise us somehow.

Please tell her we all wish her well.

[Mini Mia]

Thanks. (Well. If my Dad's brother hadn't of taken away the frying pan, Mom would have hit Dad over the head with it when they were first married. So, yeah, she is a tough cookie. -- She got really ticked off once when our neighbor's husband told his wife to pour him some more tea. All he had to do was reach back and get it out of the refrigerator, or off the counter, himself, but he made his wife do it instead. If that had of been Dad, the tea would have been poured over his head. Mom had two older brothers, and she kept up with them just fine. And Dad had no sisters either. Needless to say my sister and I were not babied/treated like delicate little girls.)

[stepper]

My sister - half sister - was born only weeks before I joined the AF. I have no idea what it's like to grow up with another girl in the house, but I hear extra bathrooms make life more tollerable.

[Mini Mia]

Yeppers. There should be one bathroom per female in any home.

[Phalon]

Tell me about it; we've only got two. And BP hasn't even reached full-blown primping age yet.

Hubs is doomed.

[stepper]

Oct 29, 2010 23:00:16 GMT -6 Phalon said:

Tell me about it; we've only got two. And BP hasn't even reached full-blown primping age yet.

Hubs is doomed.

Maybe all the renovations to the garage are a part of his soul and sanity saving plan. He's making it habitable in anticipation of the day when space - and an extra half bath - become mandatory.

[Phalon]

ARGH! I can not get onto this site, have tried everything to get it to work, and it's making me want to pull my hair out.

Why then am I here with a full head of hair? The girls' laptop; it was one of the things I tried, and it works fine. The site, that is; the laptop is a different matter. It's got so many huge programs loaded on it, and has been dropped so many times, and god only knows what else, that it runs incredibly slow. Not to mention the keyboard is so touchy it seems to have a mind of its own, which is why this is the second time I'm typing this, because when I was typing the first time, it suddenly started scrolling wildly and I don't know where the hell my partial post ended up.

I wish I was back on my computer, but whatever I tried, even following multiple steps on a Microsoft trouble-shooting page, I can't pull up the site.....or any proboards site for that matter, to include their support forum.

I wonder if Katina's having a similar issue? He and I have been having the same types of problems with proboards for quite some time due to Internet Explorer (which btw, I'm on now, but maybe it's a different version). I was here last night, and see he was here shortly afterward, so it seems to have occurred sometime overnight. The only other thing I can think of is it might have something to do with my virus protection; I downloaded the newest version of it last week: AVG Free 2011.

Any ideas? I get a blank white screen when I pull up a proboards site, and then a pop-up that says, "Internet Explorer can not open this webpage". I think maybe I just answered my own question - maybe I'll switch to Foxfire and see if that works. Joxie, if I switch, can I jump from one to the other at will?

[Phalon]

Ok, that was pretty painless, and it only took a minute....but everything looks so different. Ick! I want my old IE toolbar, the type font I'm used to seeing here, and everything else I've grown accustomed to since the beginning of my Whoosh Experience.

I hate change; it makes me want to pull my hair out.

(Joxie, please tell me if I can, and how to jump back and forth from IE to Foxfire)

[stepper]

I agree. Computers can be frustrating little critters.

[Mini Mia]

Dec 6, 2010 10:22:29 GMT -6 Phalon said:

The only other thing I can think of is it might have something to do with my virus protection; I downloaded the newest version of it last week: AVG Free 2011.

I downloaded that a little while back, and I've had no problems.

Joxie, if I switch, can I jump from one to the other at will?

You can have both open at the same time, but I'm not sure you can be logged into the same account at the same time. You can log into gams with IE, and Phalon with Firefox at the same time though.

I checked their blog and they've had some problems the past few days, perhaps this is the cause of your recent problems.

Dec 6, 2010 11:00:48 GMT -6 Phalon said:

Ok, that was pretty painless, and it only took a minute....but everything looks so different. Ick! I want my old IE toolbar, the type font I'm used to seeing here, and everything else I've grown accustomed to since the beginning of my Whoosh Experience.

I hate change; it makes me want to pull my hair out.

(Joxie, please tell me if I can, and how to jump back and forth from IE to Foxfire)

It does take a while to get used to the change. There are options where you can change the font and size to how you want it. You can also use Ctrl plus + to increase the font size, and Ctrl plus - to decrease the font size, and Ctrl plus 0 (zero) to reset the size to normal.

Change Font/Size:

Click on Tools
Click on Options...
Click on Content
Look for Fonts & Colors
Change Font and Size as you wish
Click Ok

[Mini Mia]

BTW: Phalon ... you can lurk in IE and post in Firefox, or vice versa.

I mainly use Firefox, but I still use IE sometimes.

[Phalon]

I downloaded that a little while back, and I've had no problems.

Yeah, I didn't think that was the problem, but was just going over things that changed recently as possible reasons.

I think proboards probably added another new option or script that the version of I.E. that I use didn't like. Ever since they added the new sign-in box, I'd have to pull up the site, wait for the "Internet Explorer can not open this website" pop-up, and then back-arrow for it to load. Every once in a while too, while posting I'd get the "Internet Explorer is having problems running this script. Do you want to quit?", or something to that effect.

You can have both open at the same time, but I'm not sure you can be logged into the same account at the same time. You can log into gams with IE, and Phalon with Firefox at the same time though.

I've been switching back and forth depending on what site I'm looking at. I still can't view a proboards site on I.E., but for pretty much everything else I've been switching back to the old browser. I'm just used to the toolbar, and the way my favorites are arranged on I.E., (they're not alphabetical, but in folders according to topic, and the frequency I use them - Firefox just imported everything in one nice, very, very long alphabetical list, and I'm too lazy at the moment to recategorized them.)

It does take a while to get used to the change.

Yeah, I know. I've always balked at the idea of using more than one browser because of the age of my computer; I've got everything streamlined down to the minimum number of programs that I need, just because I'm afraid a bunch of extras would overload the aging beast. But it's fast, efficient, and works fine for what I use it for.

I'm kinda liking both options, though, (but I'm still having trouble with the type here on Firefox - it's the same font, same size I think, but it appears less sharp in the body of the posts, if that makes sense.) I very much like that it underlines in red my typos though! I.E. doesn't do that, and I'd come back a day later, and wonder that the hell I was trying to say.

Actually, I don't think the red underscore will have much effect on me wondering what the hell I was saying; that's pretty much a given no matter what I type!

[Mini Mia]

Back when I switched, IE didn't have the tabs, and I really liked that in Firefox. I didn't have to have a bunch of windows open, I just opened two or three and grouped my favorite haunts per window.

One window has Whoosh, Whoosh: Secret Garden, Open House, The Illusive Muse, The Perfect Team, Katherine Fugate & A Cup of Sunshine.

Another window has IMDb boards, Katherine Fugate's Old Forum, Runboards, YukuWhoosh, YukuHavenChat (Yuku deleted recently), & YukuIllusiveMuse

I have several groups listed besides these, but the first window I keep those groups open pretty much the whole time, and the second window I check out the grouped sites, delete them, and then check out the next grouped links.

[Phalon]

You know, don't you Joxie, that you've just confused the heck out of me.

[Mini Mia]

IE now has tabs, so I thought you had already learned about them. Okay. There's a little tab at the top of your window, beneath the toolbar, and to the right of it is a plus sign. Click on it and it will open a new window, with it's own tab. Now you have two windows/tabs in the one window. Click whichever tab you want to be in. You can continue to open tabs and go to other sites. Once you have your favorite sites open in the one window, (I try to stay within 6 to 8 tabs), right click on a tab, and click on "Bookmark All Tabs..." and name the folder/s you put them in. I have:

Quick Links:

Then, to open the grouped links, I click on "Open All in Tabs" in that group.

---

Clear as mud?

[Phalon]

Clear as mud?

Actually, even clearer than that. (Surprised?)

I know about tabs. I didn't know whatever is opened in them could be saved as a group though, then opened all at once at a later time. Kind of a nifty little feature....but I don't think I'd use it. I tend to use tabs for drilling or writing more than anything else; it's rare I'm posting or keeping tabs (HA!) on more than one site at a time.

[Mini Mia]

Not too surprised. You do sometimes tend understand what I think will stump you, and what I think you'll understand, you sometimes tend to find confusing.

[Phalon]

Yes, I am quite amazing, aren't I? (eye-roll)

What if I only think I'm confused about what I actually understand, and think I know what I don't understand? Would that surprise you? Not me; I find it perfectly understandable.

[Mini Mia]

Gotcha! I understood that perfectly.

[stepper]

But it's quite possible to be confused even though you understand, so if you only think you're confused but actually understand then you'd be confused about being confused and about understanding what you thought you didn't understand but did.

[Phalon]

Not too surprised. You do sometimes tend understand what I think will stump you, and what I think you'll understand, you sometimes tend to find confusing.

How 'bout this one then, Joxie:

It took me a while before I finally figured out that deleting my cookies, history, and temp files from "Internet Options" did not delete them from Firefox as it did for IE. In the same vein, the stuff I delete from Firefox "Bookmarks" does not go into the Recycle Bin like "My Favorites" did with IE.

Is there a Firefox recycle bin or trash somewhere that I should be emptying?

[Mini Mia]

I don't know about it having a 'recycle bin,' but it does have a 'cache' that needs to be emptied once in a while.

Tools
Options...
Advanced
Network
Offline Storage
Clear Now

-------

Tools
Clear Recent History

-------

Tools
Options...
Privacy
History
[ ]Clear history when Firefox closes

[Phalon]

Thanks, Joxie. I do that second thing often, and the last, I don't do because sometimes I go back to my history if I haven't bookmarked what I need, and can't remember exactly what it is I need.

What's that first thing, though? Off-line storage? Sounds like one of those rented units where one would keep dusty, old trunks full of stuff one can't part with but doesn't have room to keep at home. Or bodies...if one happens to read or watch too much television.

[Mini Mia]

It's what they call their temp files folder ... at least I think that's what it is. It says: Use up to ______ MB of space for the cache. To me, cache = temp files.

[Mini Mia]

Yikes! Has anyone here washed your hands for 3 minutes? Then if you touch anything, wash them again for 3 minutes more? Sheesh, I never realized how much a person touches themselves before this week. Mom had to wash her hands 3 times in a row, for 3 minutes each time. 9 minutes! (She turned around from the sink and pulled her shirt down after the first washing.) Today she did better ... only one 3 minute hand wash. Me: The second I pushed my hair back out of my face I knew I had to wash again. (Drat! I so wanted to do it with one wash so I could rub it in.) My sister learned from watching us and only had to wash her's once for 3 minutes. --- We're learning how to hook Mom's tummy-tube up to the manual 'at home' dialysis bag. She'll have to do that 4 times a day for around 4 weeks, and then she gets the nighttime machine that does it all for her during the night. No more having to do it throughout the day unless necessary to do so.

The good news is, once the tube has been connected the first time, you don't have to rewash your hands if you accidentally touch something ... you just have to use the sanitizer (germ killer) before disconnecting and capping the tube. But you still need to keep touching stuff to a minimum. We were told to clasp our hands together to help remind us to keep them germ free. Yeah. You wash your hands for 3 minutes and then clasp your hands together for about 30 to 45 minutes before touching anything. (Well, really about 10/15 minutes til you make that first connection. But touch as little as possible for 30 minutes more.) --- My head itched, my hair kept falling into my eyes, (the hairspray decided to stop working), my nose started running, my whole body began itching. At least I had a mask on and no one could see I needed a tissue bad. The mask can come off for a little while once the tube is connected, and then put back on when the tube is removed and capped.

Mom's supplies come in tomorrow afternoon, and the dialysis officially starts on Friday. She got so flustered yesterday, with the hand washing, I was beginning to think this wasn't going to work, but today she sailed through it without a care in the world. I don't think she'll tackle it alone for a while, so one of us will have to be there throughout the day. About every 3/4 hours.

They told her she could opt in for a kidney transplant. I figured her age, and the WG, would keep her off the list. She wouldn't consider the transplant at first, but I think she's changing her mind now that she sees what all the manual & night-time machine consists of. She won't take a kidney from her kids though, because she and her cousin both got WG, and she's afraid one of us might get it too, and we'd be better off having both kidneys should that happen.

I feel much better about this whole process than I did Sunday night ... this seems doable, less scary. And I've given her shots before, so I can do that too if she needs it, if she's not able to do it herself. (I so hope she is able to do it herself though. ) --- The very best thing about going everyday to learn how to do this is, we stop on the way home to eat! Win/win.

[Phalon]

I'd bet this - especially the hand-washing - will become secondhand nature in hardly no time, Joxie. Glad your Mom had smooth sailing today, and glad you're feeling better about doing the procedure.

Just have a lot of hand lotion on hand (literally); I know (because I work in dirt) how dry and cracked hands get when washed excessively. Mine get so bad they crack and sometimes bleed, and dammit, they hurt.

[Mini Mia]

The nurse left the room today and let us do it alone. She stood outside the door though and watched. Mom had to wash her hands twice. After the 3 minute wash, you're suppose to touch only the paper towel, you then turn off the faucet and timer with the used paper towel, then toss it because it is now contaminated. Yeah, Mom wiped her hands with the paper towel again after turning off the faucet and timer with it, so she had to wash for 3 minutes more. I saw her do it, but it didn't register that it was a no-no ... the nurse opened the door and said, "Do you know what you just did?" Mom didn't. She wasn't aware she had even done it. And after the nurse told her what she had done I did a ... I would have let her continue if we'd been home alone, so I'm glad she did it while the nurse was watching. I'll keep an eye out for that move now, and not let it slide. Mom's hands were a bit shakier today, and at one point I told her just let me know when/if she wanted/needed me to take over and I'd wash my hands. The nurse said that at home I could wash my hands after Mom did so that I'd be ready to step in and take over without stopping to take the time in the middle of the hookup or disconnect.

Today was scary again. We were shown what to do should Mom get an infection in her tummy from not having clean enough hands. We'll have to put meds in the solution bag, and that has more steps to it, and more chances of touching stuff and having to rewash our hands over and over. I told Mom we'd better do the drain/fill right every time so that we don't give her the infection in the first place, cause I NEVER want to have to do the meds setup. Much more complicated. And the nurse said they have patients that have never gotten an infection, so we're hopeful. But we're us, so there's a chance of screwing up.

And yeah, Phalon, we will DEFINITELY have to have TONS of hand lotion on hand.

[Mini Mia]

My Mom's cousin died. (They're second cousins.) Her Wegener's Granulomatosis came back several months ago, but she seemed to be doing fine. Recently she went into the hospital and had surgery on her legs. Mom and I visited with her after Mom checked in with her dialysis nurses. She was barely awake, and hard to understand, so we didn't stay long. Mom pulled back the covers to see what was done to her legs, and above each ankle on the inner and outer shin it looked like they had filleted her like a fish. I'd heard rumors of staph, but my first thought was gangrene. She said something to me before we left, but I couldn't make it out. I wish I knew what she'd said. Her husband, my Dad's youngest brother, is dying of cancer. I never expected her to go before him.

I can't help but think about Mom in all this. Her reaction to Wegener's has always been different from my Aunt's, so I really hope she doesn't end up this way. She told me not too long ago that one of her doctor's gave her 10 years. I don't know when he told her, so I don't know how many years are left in that prediction. There have been a couple of relatives that made it to their 90s, and I was hoping Mom would too. Of course, that 10 year prediction doesn't really mean a thing. She could go sooner from something else, or new treatments could come along to prolong her life. So it's no different from any of the rest of us, really. Not as long as they're able to keep the Wegener's in check. She's learned that when her right wrist goes to aching, the Wegener's is coming back. Hopefully it won't go and change it's technique, giving it more time to destroy her body before detection.