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Sangye
07-28-2009, 04:02 AM
Could we (and by "we" I mean especially "I") start new topic threads more often? Maybe not for the strings of jokes, but for when we start discussing a new Weg topic. I've been having a hard time finding old posts. (And no, I don't mean old wooden posts, for those of you with quick wits :D)

Doug
07-28-2009, 04:13 AM
The way we (by which I mean "I" very often!) wander off topic, you might think I would argue with this. Sangye is right. We need to start new topics and threads more often. (p.s. I read "quick wits" as "nit wits" the first time through- may be more to that that some of us- by which I mean "I"- would like to admit! ha!):p

Jack
07-28-2009, 04:42 AM
I have to agree. Many of the posts tend to wander off topic or get hijacked. Andrew needs to keep us in line!

Doug
07-28-2009, 04:46 AM
It seems there is a limit on who can start new threads, too. It's the old "You aren't privileged to access that topic" business. I think Andrew's language is more subtle, but means the same. Let us know how it is, Boss! :):)

crackers
07-28-2009, 09:38 AM
it's so easy to wander off the original thread.one person makes a comment then another carries it on and before you know it you're talking about deep fried mars bars.
john.

Jack
07-28-2009, 03:44 PM
How many pairs of shoes do you own? ;)

crackers
07-28-2009, 07:26 PM
before you begin to think i've over medicated i was referring to a thread i started titled "started on cellcept today" and which ended with doug talking about deep fried snicker bars.thankfully i've got plenty of shoes.
john.

Jack
07-28-2009, 08:16 PM
The "Search" box at the top of the page works a treat. ;)

Sangye
07-28-2009, 10:09 PM
There's no shortage of laughs in this group, that's for sure! But I've been wondering, do you walk to work or carry your lunch?

crackers
07-29-2009, 12:49 AM
sorry sangye you've lost me completely :confused:
john.

Sangye
07-29-2009, 12:54 AM
LOL-- it's an old joke, John. There's no answer to it. Like asking "Is the sun shining or do we have potato chips?"

crackers
07-29-2009, 01:02 AM
it's another one of those culture clashes then.same words different language.thanks for explaining that sangye,i was scratching my head trying to figure it out.another 2 minutes and there would have been blood :eek:
john.

Luce
07-29-2009, 05:27 AM
What's all this got to do with the price of fish?!

Sangye
07-29-2009, 06:01 AM
Is fish less expensive in England? It can be pretty pricey here in the states. Well, at least in Maryland.

Jack
07-29-2009, 07:07 AM
What's all this got to do with the price of fish?!
Its just another expression that means this thread is going way off topic.:rolleyes:

Sangye
07-29-2009, 07:24 AM
I know! I just thought I'd tug on the thread some more.... :D

Jack
07-29-2009, 07:31 AM
I suspected that you might, but I bit anyway.:p

crackers
07-29-2009, 07:56 AM
see,here we go again.:D
john.

Sangye
07-29-2009, 07:57 AM
Yeah, except that this thread is all about going off topic. So if we go off topic, then we're actually ON topic!

crackers
07-29-2009, 08:03 AM
sangye in some twisted and insane way your right.i need to go lie down in a dark room.:eek:
john.

Sangye
07-29-2009, 08:10 AM
Would you like a deep fried Mars bar when you go??

crackers
07-29-2009, 10:01 AM
no thank you sangye i think i'll pass on that one.while off topic is really on topic just a few a miles from where we live a man went to the atm machine to check his bank balance.it told him he had 29 million pounds in his account.he goes in the bank and tells the manager that there has been a mistake.the manager says no mistake "it's yours go spend it".so he contacts the head office of the bank and tells them the story.they think he's some crazy person and ignore him.after numerous phone calls and e-mails somebody finally checks it out and realises that he's telling the truth.they quickly take back the money and tell him they will give him a reward for his honesty.the next day a basket of food arrives worth about £20.so much for honesty.after all the bad press banks have had recently you'd have thought they have taken the opportunity to redress that.i have to admit i'd have done exactly the same as him but it makes you wonder if banks deserve that level of honesty.
john.

Doug
07-29-2009, 12:33 PM
:):)If this were Hollywood, an angry crowd of peasants with torches and pitchforks would assemble in front of the bank insisting on justice. The craven bank manager would hide in the vault, but young Jimmy Stewart would stand on a pyre (bad choice, but highest point in the village square) proclaiming the intrinsic decency of mankind, the virtues of capitalism and the Transylvanian way of life, and why 20 pounds is a blinking lot of money to foolish peasants and how if they don't disperse, the National Guard will disperse them with "firesticks" (they being too poor to have the word "blunderbuss" in their vocabularies....), and so there. I guess you figured out how they react to that, and we see the young Jimmy Stewart, aflame, screaming in pain, "And to think I've been a heretic for years, have escaped the Office of the Holy Inquisition, only to meet my fate this way. How ironic!" What was the topic? ;):eek:

Doug
07-29-2009, 05:35 PM
p.s. Pardon me for blatant self-boosterism, but I've upgraded my blog, adding videos and cat and bunny pictures (I'm shameless...!), completed a new blog on the difference between wedgie- and weggieboy (videos showing both, plus cat picture, and one of me you will recall caused general psychological distress on the site), added a "I am not Maru" and a genuine Maru ("Lion", the cat's name in Japanese) the cat video to the blog where I have a conversation with myself about not blogging in June, and replaced the gamelan video with a much better example from Bali. The WordPress people just recently ungraded the site, and I discovered how to take advantage of them today.:D Thank you for making yesterday the one with the biggest number of hits since I started it! The checks are in the mail!

Jack
07-29-2009, 07:02 PM
I like your blog Doug. It has a relaxed, rambling style! :cool:

Doug
07-30-2009, 02:32 AM
Unfortunately, it is exactly what I'm like! Hope all weggies enjoyed the back-references to our site in-jokes! Could resist! Took me till 2 am my time (9am GMT) last night to get the videos and pictures to settle down and stay put, but the upside is I now know how to do it! Thanks for you comments, Jack! :) (p.s. I still need to get our rat-bit into "conversation" some way. It is one of my favorite forum creations. Jolanta, wasn't it?)

Cindy M
08-05-2009, 12:26 PM
I agree with the new topics. I have not been on the site since May 21/09 and was not sure where to go to say I am back. I am sorry that I have not been an active member for a while but alot has been going on. I thought I had this almost beat but I lost again. I should have been taking my symptons more seriously but I didn't.

My opthomologist was very concerned with me and wanted to blast this disease. When I went to see him I was down to 9 (5mg) preds per day, and 125mg of cyclophosphamide per day. My right eye was a complete mess, almost total loss of vision, headaches, etc. He talked to my rhuematologist and they increased by preds to 16 (5mg) per day and I also did 3 days of prednisone IV. I also have been approved for a new drug that I will be taking by IV on August 5 called Rituxan. Things have calmed down a bit and my vision is a bit better, but no promises. I have alot of ointments and drops for my eye but they are only for comfort. I also had an orbital CT scan down and I went from 1 mass to 3 masses behind my eye. Surgery is out of the question right now because of all the inflamation. I also get some bleeding from the eye because of the pressure.

My new phrase or motto has become "WHEN I GET BETTER" not "If I get better" because I think that might have jinxed me. I no longer drive because of all the eye problems, not sure how I feel about that. Lost alot of freedom of coming and going, but no longer have to pay for gas.

Hope everyone else is doing fine.

Sangye
08-05-2009, 12:45 PM
Hi Cindy,
I'm so sorry to hear what you've been going through! Eye stuff is very scary. I'm glad your docs took it seriously. I hear a lot of good things about Rituxan, so I hope it works well for you, too.

I've recently started saying "When I get well" also. And "When I go back to work," etc.... I said it in the beginning after dx, but just lost heart that it was a possibility after awhile. Hang in there.

Doug
08-05-2009, 02:28 PM
You have the right attitude, Cindy.

Living in a prairie province, I suspect losing the ability to drive is much like it is here: everything is so spread out and distant, and you think in terms of hours to get somewhere, not kilometers. Not being able to drive is to be isolated from, well, virtually everything.

I imagine Edmonton is cosmopolitan enough that there must be light rail or buses dedicated to people with disabilities or old age that pick you up and deliver you to destinations for nothing or a nominal fee. Try to find out if such services are available to you. There may even be volunteer organizations that provide transportation for people with needs. There are such services in my small town, so I'd be surprised if you don't have them in your city!

Relying on family and friends for rides for any length of time generally strains the good natures of saints, (even if you offer to help with gasoline) let alone those of family and friends. It's an option, however, for the short term.

I hope the eye issue can be brought back into line for you. It sounds like you might be having some improvement. Let's hope so!:)

jola57
08-09-2009, 01:38 AM
Eyes are scarry stuff, glad they are taking it seriously

Cindy M
08-09-2009, 02:55 PM
Hi Sangye, I have a question....Do you know if or has anyone out there ever been in remission from Wegs. And if they have...how long did it take?....are they still in remission....It just seems like we are all struggling and some good news would give us a little hope. Does this disease eventually burn itself out? Run its course? I know it is a very serious disease, 2 weeks ago when I went to see my opthamologist I believe he wanted me to really truly understand how serious/danagerous this disease is and not to wait for my next Dr's appt if things are not right and there is change in my health. I had mentioned how bad my eye had become, lost most of my vision, CT scan showed 3 masses now instead of one. He was the one that actually sat me down and said that 20 plus years ago people died when they were in my condition, that he didn't know if I would get my vision back or if I would regain the movement of my eye. He was the one that wanted to blast this disease. He did applogize the next week when I seen him again, but I told him that I was appreciative of the truth and that I would no longer wait for my appointments if things were changing.

Jack
08-09-2009, 03:25 PM
Hi Cindy,

I developed Wegs 24 years ago. By the time I was diagnosed I had a good selection of severe symptoms including renal failure, was unable to walk and dying!

I would say that the first 5 years were a bit of a roller coaster ride with relapses, infections, new symptoms and such like. However, I was still able to work for most of this time in spite of being on dialysis and having quite a lot of time off. Luckily, I worked for a large company and they still wanted me. :)

In time, my medication improved, the disease went into remission and I received a renal transplant. With a few problems here and there, I then went on to raise a couple of children (adopted) and hold down a good job. It has only been in recent years that the long term effects of medication and repeated minor illness have caught up with me and I have had to retire, luckily on a full pension. :)

It may take quite some time to get everything sorted, but there is a real chance that you can get enough of your health back to live a good life. The reality being that you may well never get back to your former condition, but your new "normal" may well be not that bad. :)

Hope things improve for you soon!

Doug
08-09-2009, 04:15 PM
I'm in remission. I was diagnosed in December 2003, and was is remission by around April 2005. I can't be specific because my doctor was hesitant to call the exact time I hit remission. One of my measureables was a bit high (cANCA results). Though several results were a bit high, he noted, they were stable within that range. I guess my general well-being now supports that. The only drug I'm on related to WG is SMZ/TMP DS 800/160 tablets. Remission is possible. There is a percentage of WG patients who don't achieve remission, however, so cross your fingers.

Sangye
08-09-2009, 11:18 PM
There's one member on here named Mike Caven who was in remission for a whopping 27 years and only recently flared. I think he was in total remission. (ie no symptoms, no drugs). Maybe he'll comment. Or you can go read his story. It gives me a lot of hope, because 27 years ago treatment was SO different.

Until I joined this group last fall, I didn't know there was such a thing as drug-supported remission (ie, few or no Wegs signs/symptoms as long as you stay on a drug or two). That idea would have been unacceptable to me in the beginning, but now I'll take it! It's better than the state I'm in-- constant pain, fatigue, etc....

So don't ever lose hope. Like one of my docs said, "Don't allow yourself that." :)

Cindy M
08-10-2009, 04:14 AM
Thanks for the information. I am like everyone else hoping for remission and it sure helps to know that others have achieved it.

Cindy M
08-10-2009, 04:26 AM
It's amazing what you have gone through, being able to work with this disease shows the strength and determination that you have. I believe that is one of the most important things, not letting this beat us. When I was first diagnosed it was like finally I can put a name to this, it was scary not knowing why none of the drugs were working. Then it felt like I would never be able to enjoy things again. Today I feel like I need to take my life back into control and make some changes. I am sorry if I am rambling on but you have caught me on a determination day. I have been a widow for 9 years now, my children and 18 and 20, they still live with me but I am sure will be moving out in the next few years. I live in a house with a fairly big yard but I am unable to do yard work because of the dust, grass etc. My eyes become very infected whenever I spend to much time in the yard. So I have decided to make a change and move into a duplex or condo with a smaller yard and maybe one that has the outside maintenance done for you. I was never really ready to sell because this is the house the girls remember with their dad but I think that now I have to make the changes for myself. It's pretty scary but one I keep thinking of. Man, have I ever gone off topic. Back to the remission, I am truly hoping that I can (not to sound selfish) truly concentrate on myself and put myself first for a change.

I have not worked since November of 2008 but I believe my job is safe for a year. I guess I will have to see what happens after that.

Doug
08-10-2009, 05:08 AM
Cindy- I moved from a house with a middle-sized yard, but one with lots of flowerbeds that required considerable energy to maintain and to keep weeds and (also a weed in my opinion!) grass from over-running. The driveway abutted the neighbors, which meant the snow- this is a state where blizzards and heavy snow occur!- had to be pushed from the middle of the house toward the back or the front. Of course, there always was a drift the length of the driveway! I was 56 at the time, and my pride took a bit of a dive because I moved into a retirement housing complex. On the other hand, the first time it snowed and I didn't have to do anything about it, I swallowed that pride and glowed with joy.

May you feel you made the right decision. I drive by the old house from time to time, just to see what's changed on the outside. They dug out all of the roses I planted, a flower bed that I sweated and struggled to create they reseeded with that weed, grass! A long bed of heirloom rhubarb: gone! A mature grape vine (actually three varieties), gone. At first I was angry. Then I realized one thing: It's the new owner's place, and she has every right to make it home to her and her family, even if that means modifying it in ways that wipe out what made it my home!

Good luck in your new environment, whenever you make the change, and enjoy being free of householder duties, many of which your late husband no doubt did before you.

Remember, too, that the change, literally, will help you heal. When we broke up the house, I still was in recovery. I'd try to clean and sort through things, work an hour or so, become nauseated, would lie down to try to get back in control, would get up, vomit five to ten times in a row, drive back to the apartment, and spend the rest of the day in recovery. I finally told the family I couldn't do any more, and my sisters (who'd come to stay with us to help sort through things to get them ready for the sale) finished the job. The dust was what was getting me.

Sangye
08-10-2009, 07:00 AM
Cindy, I'm sure your daughters wouldn't want you to suffer just for them to enjoy the house they had with their dad. That's double pain. He isn't in the house, he's in all of your hearts and minds. There's no taking that away. :)

crackers
08-10-2009, 07:14 AM
cindy there comes a point where you have to think about yourself first.the kids are adults now and fit and healthy ones at that i hope.it's been said a lot on here to " know your limits ".if the upkeep of the house is outside those limits then you must make plans accordingly.
john.

jola57
08-11-2009, 03:49 AM
Cindy, what Doug says is so true. You yourself know how hard is is becomming to take care of the property. As a realtor I can tell you that resale value has a lot to do with curb appeal and for as long as your girls are with you I hope they help out with the yard, but after they leave what will happen then. I live on a large 8 acre lot. When my sons were here they mowed on the ride on mower, when they left I did. Now It has become a chore (don't ask where my husband is - in the mountains or kayaking) I long to go to a place where all that is done for me, same with snow removal. So moral of the story, talk to your girls first but do downsize to a place where you don't have to worry about yard upkeep.

Jack
08-11-2009, 04:32 AM
I have had the front garden brick paved and landscaped with the remaining ground covered in shrubs to keep the weeds at bay. The back of the house still has a small lawn, but it is now my wife's job to mow it and I hire in a gardener twice a year to keep the borders in a reasonable state.
Inside, I have always done the decorating myself, but this is starting to get beyond me now even if I pace myself over several weeks!
I am starting to understand how houses can become derelict!