The Weggie Book - tell your story time

[marta]

Hi gang,

I've put together an outline for OUR Weggie Book. I've sent it to a few of you that I know were interested, and have requested email accounts for those who I can't send an email to via the forum.

If you didn't get a message from me, and would like to participate, please send me a message telling me so and I'll make sure I send you the outline.

I'm going to lay it out (that's what I use to do before I got knocked out with the WG stick) and make it something special. Or I'll do my best anyways.

I'm thinking that we can get the thought process going, and if we give ourselves until late spring to put it together then it wouldn't be too unrealisitc....

Looking forward to hearing from you.

marta

[pberggren1]

Thanks Marta,

I got your e-mail and hopefully will start typing away sometime soon. I just felt like crap today. Chest pains, left side of face hurts when swallowing, and low energy.

[marta]

Absolutely no rush. I find that if I think about this stuff too much, I end up dreaming about it, and hey, who needs to deal with it in your life and in your dreams.

Baby steps. Just like dealing with the nastiness. Baby baby steps.

Hope you're feeling better tomorrow Phil. I know what you're talking about cuz I've been feeling absolutely awful the last few days. Super gross, I needed to get my mind off how I'm feeling so that's why I'm doing this.

Take care.
m

[elephant]

Phil, get to a doctor soon if your having chest pain. It could be anything.....

[pberggren1]

The chest pain went away on its own fairly quickly over about 20 to 30 minutes. I feel better now but mostly just tired.

[Sangye]

Phil, I'm worried that the Wegs is getting more active. Are you completely off cellcept and pred now?

[pberggren1]

I am a little worried too.

I am back up to 2g per day of Cellcept from tapering down to 500mg. My doc wanted to play it safe an up it back to 2g because my PR3 screening came back positive for the first time in many months. On monday we should have the actual titer results. My last few C-ANCAs have been 4 or 5.

My white cell count is also up a bit and it is mostly the neutrophils that are up. So I may have another infection going on. My doc was worried about this as well and asked me a bunch of questions and what sympotms I had. I have had a bit of diareha the last 2 to 4 days, but nothing serious, more just really loose stools with a bit of blood in the last 2, but I am sure it is just an old anal fissure that is acting up.

I am back up to 10mg of pred as well. My CRP is climbing the last 10 days or so. But my ESR is remaining around 5 to 10. So we will continue to monitor those 2 every MWF along with CBC, renal function, and electrolytes. And ANCA, C3, C4, and liver function panel, and sputum every Friday. Will see how the next few days go and should know more next week as to what the blood results are and what to do about the Amikacin wrecking my hearing.

[Lightwarrior]

Phil,
You are seeing a Wegs specialist now right? I'm worried about you. Wish I could do something...I'll send you light and energy.I hope the Weg Dog goes back to sleep soon.

[DEE]

Phil
hope you get some answers monday take care of you :hug1:

[pberggren1]

Yes, I have a Wegs Specialist right in town here. He is monitoring everything very closely. I will talk to him next week a couple of times again.

[Sangye]

I'm glad your doc is monitoring you closely. It takes a month for the higher dose of cellcept to kick in, so I'm hoping the 10mg pred is enough to get hold of the Wegs dog if he's starting to wake up at all. We need to come up with a good lullaby for that dog, don't we?

[Jack]

Sometimes I just want to scream! :predrage:

What have we done to deserve this crap?

Sorry for the outburst, I'll get it together again in a minute. :blushing:

[elephant]

Go ahead and get it out Jack! When no one is at home I talk to myself and I say things that I wouldn't want anyone to hear.

[Cindy]

Sometimes I just want to scream! :predrage:

What have we done to deserve this crap?

Sorry for the outburst, I'll get it together again in a minute. :blushing:

Jack, I know what you mean. I answer this question with: "I got this because I am strong enough to bare the weight while standing up and shouting to the world - Hey, we're out there: Do something!"

[Luce]

Hi Marta

Can you send it to me pease, however I'm having troube with my keyboard at the moment and one of my keys is broken - can you guess which one it is from this sentence?! It's the first etter of my name and is between K and M in the aphabet, and is aso in my emai address.
My emai address is [email protected] but with one of my magic missing etters at the front. I may not get to writing anything for a whie as I don't want to have to go back through the whoe thing putting (etter between K and M)'s back in.

I woud aso ike to request a hoodie design on Zazze if you're up to it, I reay want the gir fighting a new evi on the back in a big ogo on a grey hoodie with a sma WG ogo on the front right pocket. But ony if you're we enough to do it.

I do apoogise for the ack of (etter between K and M)'s in this post, hopefuy you can read it and maybe even augh at my pain in not being abe to write my own name!

Thanks
uce
XxX

[elephant]

HEy Luce you can borrow my L....sorry had to do make a funny. :)

[Sangye]

Omigosh, that cracked me up. I was aughing at your pain, uce. :laugh::laugh:

[julia]

That was so funny.

[Luce]

Gad I made you augh!

[chrisTIn@]

Hey uce! I ike this too!
Very funny...:biggrin1:

[Sangye]

I'm sti aughing....:laugh::laugh:

uce, have you tried samming your keyboard on the desk? Sometimes a crumb or bit of int gets stuck under a key. (This is so funny. Everyone shoud pick a etter to omit from their typing in support of uce. :hug3:)

[Luce]

I have an Eee netbook so don't want to be too heavy handed with it, might have to get a USB keyboard if I can't fix it. I need to order my Christmas presents soon and it's going to be mighty hard if I can't write my own name!

Try writing on here without using any W's, I'd soon give up! I am getting used to picking words without using the affected character though, a perfect post this time.

uce
XxX

(Damn, sooo cose!)

[Sangye]

LOL! Yeah, if we left out "w" we'd all be "eggies."

[marta]

Luce, I woke my mom and dad up a couple of nights ago reading this thread on my iPhone. Reay aughing out oud... It was the absolute best laugh I had the whole time I was in the city. Thanks for that!!!!

I'm sorry that I didn't manage to put together the hoodie you asked for before the sale, I will do it tonight or tomorrow. I just got home, and here I am on the computer, but I'll get it done just in case another sale creeps up on us unannounced.

I'm doing better. The cyclo - on again, off again regime wasn't too great, but now I've kinda put my foot down and insisted treatment. I'm unfortunately not taking any antibiotics to protect my lungs from that pneumo bug, but I'll see my doc next Monday and talk about getting on a desensitization program for Bactrim like me2 did. Thanks for the info by the way. Things in my head and sinuses are starting to get a little better and I know that within a week of being on the magic chemo bullet, things will be markedly improved. Is there anyone out there who is taking any other antibiotic (other than Bactrim and Dapsone) to keep your lungs safe while being immunosupressed? Just curious. My rheumy is trying to get info from an infectious disease doc, but nothing so far.

Also I will be getting back to a few of you tomorrow. I haven't been ignoring, I promise. Just out of electronic reach of my files and email account. BUT I have been thinking of you lots.

[marta]

Just made the hoodie. Hope it works for you Luce. They are quite restrictive with where you can put the graphics and I can't do it on the pocket, so I put it on the right hand side up higher (I tried close to the pocked but it looked odd). Also not sure if you wanted the Weggie on Board thing or something else. Let me know if it's something else and I'll change it. Any requests are welcome (within their stringent guidelines of course).

Have a great day fellow 'eggies'.

[Luce]

Hi Marta

Thank you so much, I know you're having a rough time but I'm sti saving my pennies so there's absoutey no rush. Zazze seem to have a sae every other weekend anyway, so I don't think I missed out.

I ove the back, its exacty what I had in mind. However I was an idiot and for the front I actuay meant the eft side if you were wearing it (the right as you ooked at it). Woud you be abe to change the wording to either just the "Weggie on the inside" ogo or "Weggies Unite"? I reay ike what you did on the front but have aready bought the hoody with Weggie on Board on the back, so was ooking for a different sogan this time.

Thanks so much and I hope you get a treatment regime sorted out.

uce
XxX

[Sangye]

uce, I hope you get the sogan you're ooking for. Sti aughing.... :laugh::laugh::laugh:

[pwc51]

..... Is there anyone out there who is taking any other antibiotic (other than Bactrim and Dapsone) to keep your lungs safe while being immunosupressed? Just curious. ....

For info, I am undergoing a second course of cyclophosphamide etc and am on no antibiotic. We tried Bactrim for a while first time round but was advised to stop after a few weeks as it started affecting my liver. So far, famous last words, I don't seem to have been any more susceptible to the bugs going around than before!

[pberggren1]

For info, I am undergoing a second course of cyclophosphamide etc and am on no antibiotic. We tried Bactrim for a while first time round but was advised to stop after a few weeks as it started affecting my liver. So far, famous last words, I don't seem to have been any more susceptible to the bugs going around than before!

So Dale, have they tried any other prophylactic antibiotic like Dapsone or tried the sulfa desensitization so you can take Bactrim?

[pwc51]

Hi Phil, Nothing else has been suggested - I am happy with my treatment and know that I am being closely monitored so have not felt the need to press for an alternative yet, and hopefully won't need to!

[drz]

[QUOTE=marta;301Is there anyone out there who is taking any other antibiotic (other than Bactrim and Dapsone) to keep your lungs safe while being immunosupressed? Just curious. .[/QUOTE]

I can't take Bactrim due to drug allergy and dapsone broke my red blood cells and caused anemia. I take a nebulizer every four weeks of pentamide and have usually been on some antibiotic for bladder infections. The pentamide supposedly helps control the normal fungus people have in their lungs and keeps it from getting out of control. Healthy people normally have no problem with the fungus usually found in their lungs.

[Sangye]

drz, the purpose of taking Bactrim with ctx is to protect against Pneumocystis carinii, a type of bacteria that causes a difficult-to-treat pneumonia in immune-compromised people. The pentamide for fungus is a different matter. I haven't heard of that and wonder if you're on it because of a history of fungal infections.

I was on Bactrim the first time I took ctx, but I didn't take it last year when I was on it the second time. It was a risk, but Bactrim has been hard on me in the past and I didn't want to weaken my body with it. Dr Seo didn't get upset like I thought he would. I'm pretty good at avoiding infection. For those of you who work or live with other people (especially school-age children), the risk is much greater.

[pberggren1]

drz, the purpose of taking Bactrim with ctx is to protect against Pneumocystis carinii, a type of bacteria that causes a difficult-to-treat pneumonia in immune-compromised people. The pentamide for fungus is a different matter. I haven't heard of that and wonder if you're on it because of a history of fungal infections.

I was on Bactrim the first time I took ctx, but I didn't take it last year when I was on it the second time. It was a risk, but Bactrim has been hard on me in the past and I didn't want to weaken my body with it. Dr Seo didn't get upset like I thought he would. I'm pretty good at avoiding infection. For those of you who work or live with other people (especially school-age children), the risk is much greater.

So Sangye, I am curious as to how the Bactrim was hard on you? I take it it really wiped you out and really disrupted the intestinal flora? I live with my parents who are not in the greatest of health. They both smoke and drink and are not the cleanest people on the planet. I will ask my doc on Wednesday about taking prophylactic Bactrim while on chemo and other immuno suppressive drugs.

[Sangye]

Yeah-- what you said. Just really wiped me out and messed up my gut. Both those things make you more susceptible to infection, so for me the risk outweighed the benefit.

It's very individual, though. I'd never talk someone out of taking Bactrim while on ctx (or any other time if it helps). If you can tolerate it, it's best to take it and prevent PCP. However in your case, I don't know that adding another antibiotic is needed. You're on some heavy-duty stuff! I'd run it by both your Wegs doc and your Infectious Disease doc.

[pberggren1]

Yeah-- what you said. Just really wiped me out and messed up my gut. Both those things make you more susceptible to infection, so for me the risk outweighed the benefit.

It's very individual, though. I'd never talk someone out of taking Bactrim while on ctx (or any other time if it helps). If you can tolerate it, it's best to take it and prevent PCP. However in your case, I don't know that adding another antibiotic is needed. You're on some heavy-duty stuff! I'd run it by both your Wegs doc and your Infectious Disease doc.

Ya, right now they both say what I am on, the Amikacin and Clarithromycin, are enough to wipe out almost anything and adding Bactrim would be useless and might cause more problems. I was refering to using Bactrim down the road when I am off these nasty antibiotics and have this lung infection cleared up and when on ctx or any other immuno suppressant in the future.

[marta]

Hi Marta

Thank you so much, I know you're having a rough time but I'm sti saving my pennies so there's absoutey no rush. Zazze seem to have a sae every other weekend anyway, so I don't think I missed out.

I ove the back, its exacty what I had in mind. However I was an idiot and for the front I actuay meant the eft side if you were wearing it (the right as you ooked at it). Woud you be abe to change the wording to either just the "Weggie on the inside" ogo or "Weggies Unite"? I reay ike what you did on the front but have aready bought the hoody with Weggie on Board on the back, so was ooking for a different sogan this time.

Thanks so much and I hope you get a treatment regime sorted out.

uce
XxX

It's done Luce. I've taken the other one off, so it shouldn't be confusing with two of them looking so similar. Hope this is what you had in mind (I was having a left-right dislexia moment - it was funny trying to get my brain around it - must be the granulomas pushing on my three brain cells) If it's not, please don't hesitate to let me know, it takes literally two or three minutes, so it's absolutely not a problem. That goes for all of you, if you have an idea and would like to see something that I haven't put up there (I still have my ideas from the hospital, but it'll take me a bit longer to put the artwork together - and I'm just catching up now) let me know. With the images I already have on there, it takes no time at all to put together a product.

Peter, thanks for the info. That's actually quite reassuring, as it's a bit of a stressor on my mind. I'm going on a flight next week and that actually scares me a little. I think I might put on a mask for the first time since diagnosis. My mom and sister are going with me and said they'd wear masks in solidarity - I can just see the airport security now with the three masked Bulgarians.

[gmyi]

Hi gang,

I've put together an outline for OUR Weggie Book. I've sent it to a few of you that I know were interested, and have requested email accounts for those who I can't send an email to via the forum.

If you didn't get a message from me, and would like to participate, please send me a message telling me so and I'll make sure I send you the outline.

I'm going to lay it out (that's what I use to do before I got knocked out with the WG stick) and make it something special. Or I'll do my best anyways.

I'm thinking that we can get the thought process going, and if we give ourselves until late spring to put it together then it wouldn't be too unrealisitc....

Looking forward to hearing from you.

marta
i am interested please send to me also my email [email protected]
thanks

[DEE]

[QUOTE=marta;30155]It's done Luce. I've taken the other one off, so it shouldn't be confusing with two of them looking so similar.
hi marta just a message from a soon to be poor weggie ,just ordered the new weggie girl hoodie but in tee shirt format
first day of hubbies holiday and we have had plenty of snow last night so had to give him something to do and what better than order from weggiesunite
my daughter asked what i want for christmas just sent her the site details too:thumbsup:
glad to here you are on the right road again ive just changed from a long spell of cxt but it worked for me too , now taking imuran and fingers crossed it seems to be working too
take care of you and yours DEEx

[Luce]

Hi Marta

As long as you're sure I'm not being a pain and taking up all your free time - the hoodie looks good but I'm sure on the other one the girl on the back was larger and in the centre. She seems to have shrunk and slipped off to one side!
If you could make it a large, central pic on the back I'd be most grateful and I promise after all this hassle I will buy it - the front is looking great now (don't change it!).

Also you may have noticed I temporarily have my 'L's back - don't worry though, this is only because I'm at work and my comedy messages will continue.

Luce
XxX

[Sangye]

LOL! I'm ooking forward to your posts from home, uce. :laugh:

[pberggren1]

So Marta, where are you guys going?

[pwc51]

.... three masked Bulgarians.

I'm not sure if this is a singing group (odd name for a girl band!) or some sort of thriller - whatever, I trust it will all go well?!

[marta]

Hi Marta

As long as you're sure I'm not being a pain and taking up all your free time - the hoodie looks good but I'm sure on the other one the girl on the back was larger and in the centre. She seems to have shrunk and slipped off to one side!
If you could make it a large, central pic on the back I'd be most grateful and I promise after all this hassle I will buy it - the front is looking great now (don't change it!).

Also you may have noticed I temporarily have my 'L's back - don't worry though, this is only because I'm at work and my comedy messages will continue.

Luce
XxX

Hi Luce, not a pain at all. The deed is done. There is a new one - the model is a blond girl and I made the fightin' chick in the back as big as they would let me. I'm with Sangye in looking forward to your posts from home. :thumbsup:
I'm so glad you guys are into the stuff. It makes me happy.

Phil, off to Vancouver for a girl's trip. Mom and Hana (my sister Hana) are super stoked to see this healer called Adam. I'm going with an open mind, but more for the girl's trip with my beautiful family, if some miraculous healing happens in the process - awesome.

Peter, if you heard us sing, rock band would be the last thing on your mind. Although we do look kinda rad - especially if we don our masks.:biggrin1::biggrin1::biggrin1:

[pberggren1]

Healer? Adam? What's that all about Marta?

[marta]

In fear of having this take a turn into a yucky direction I have chosen to remove this post. In hindsight, I'm sorry I shared.

[pberggren1]

I had a feeling that it would be an interesting reaction to that comment.
I know. Like I said I'm going for the company and our first girl's trip in decades - actually ever now that I think about it. My mom's a Reiki master and practices wro-shr (reflexology) and my sis has just started playing with energy healing. They've both been interested in Adam for a while and my sis found this session a while ago and we decided to do a road trip. Here's his link, (
http://www.dreamhealer.com/about) but I haven't actually looked at any of it. I'm going without any expectations or assumptions and let the chips fall where they may. I'm usually a keener and look and research everything, but not this time. I'm looking at it as more of a 'last minute all inclusive vacation purchase' - they're always better because you go without expectations and have a good time and get your money's worth. If you think about it too much and grow all kinds of expectations then it's easier to get let down and/or get upset.

How's that for a very babbly explanation to a very simple question?

Welllllllll, Ok. I was expecting no less than 1500 words, but I will let you off the hook this time. And as far as my opinion goes, wellllllllll? If you want my opinion about Adam, which by the way is the ABSOLUTE TRUTH, just let me know.:thumbdn:

[Sangye]

Marta, I thought it was just fine. I hope you have a great trip whatever you do! :smile1:

[julia]

I do apoogise for the ack of (etter between K and M)'s in this post, hopefuy you can read it and maybe even augh at my pain in not being abe to write my own name!

Thanks
uce
XxX

I kind of feel guilty about laughing at your situation. knowing you are unable to laugh at this time. :lol: LOL hope you get your L back soon.

[marta]

Thanks Sangye.

[Luce]

Thank you so much Marta, its perrrrrfect! (Sti got my R's!). I promise to buy it as soon as there is another sae on at Zazze.

Aso thanks for the book outine, I think its fabuous and you've put a ot of work into our guideines - its a reay good way to structure our stories into what wi become a very usefu book for those newy diagnosed.

Keep aughing Juia, I sti find it funny too! As ong as you can guys can edit them back in in your heads when you read my posts without too much troube.

[marta]

My pleasurrrrre Luce.

As for the book, you should see how awesome each story looks layed out in my mind. Hopefully it materializes in reality the way it looks in my vision.

I too love your 'l-less' posts. They make me chuckle everytime and they're probably good for my atrophying weggie brain - a itte menta excercise.

[Psyborg]

Marta,

I have a first draft done...not sure if it's coherent, going to have my wife read over it. How long are you looking for for a section? I'm around 2400 words, not sure if thats too long or short, or just fine :)

Thanks,
Bob

[marta]

Hey Bob,

Wow, you're fast. Must be the military training - I envy that (in a good way) Make it as long or as short as you like. I don't want to put any limitations on this - in either direction. I don't think anything is too long or too short. It's your thing, some people might want to say more some less, the beauty of it being a collection of stories is that it will be different in the way it's presented and you'll get to see the people behind the stories in the way that they tell their stories. Do what feels right.

THANK YOU!
marta

[Jack]

Oh dear, mine is only 1000 words. :unsure:

[marta]

ha ha, I usually have a problem from the opposite direction - as you might have already noticed.

Just got your email Jack, it's looks great, I'll send you a private message. I'm just going out to get some cookie stuff to make a batch of Christmas cookies with Hana, and I'll do some computer stuff later today. Thanks so much. You guys rock.

[Psyborg]

Well some of that is from Marta's email too :) My wife's a much better writer than me...I'm going to have her edit it for me ;)

[Brooke]

I still have to do mine!! i will try and do that soon.

[Luce]

So sorry to have to break this news, but I have finally found my L's again. Now I have my luscious, lovely, luxurious L's I can LOL with you all once more.
I bought a cheap compact USB keyboard, not the ideal solution and just a workaround for now but it does the job. It does mean I have to balance my little netbook on my knee and the keyboard on my pred belly, but its still preferable to being L-less.

Luce
XxX

[Sangye]

Aw he , it was so funny....

[Terri]

Oh darn Luce, I haven't been on my computer since the middle of Oct. due to a bad dial-up connection.
I've been reading through some of the posts trying to catch up abit and all of this L-less stuff just cracked me up. And by the time I got to the end it was over. I've missed hearing about everyone. And Sangye, before you ask....I am doing just ok right now. I've tapered recently from 10mg pred to 7.5 and I'm not sure I have adjusted yet. It might be something else going on. I can't remember feeling this way before when I tapered down. If you remember, I work at an elementary school and the past few weeks I have been around many snotty nose kids sneezing and coughing. I don't have any coughing or even a sore throat but the rest of me feels like a truck hit me.
Hey Marta, if you get a chance you can send me an email too about the story thing. [email protected]
I'm just glad I'm able to be back online. :thumbsup:

[marta]

Hey Terri, I've just sent it out to you. Glad you're back. Take care of yourself with those snotty nosed little urchins running around.

Luce, Luce, Luce... I'm happy for you but sad for us. This 'l-less' stint has given me so much giggles that I'm sad it's done. Maybe you'll find it too hard to work with a remote keyboard and go back to the 'and acking 's' :lol:

[elephant]

Terri, did you taper from 10 mg slowly going down 1mg every 4 weeks. I had a problem tapering...now I am tapering 1/2 mg every 4 weeks and I am down to 5 1/2 mg of prednisone. Keep an eye out if you start to feel worse.

[Sangye]

Terri, "truck hit me" sounds like the pred is too low. In May when I tapered too fast that's exactly how I felt. I kept chalking it up to this thing or that, but it was the pred. I continued like that for 3 weeks, when I saw Dr Seo. I was almost off pred! Dr Seo said that if I'd raised the pred within 2-3 days I could have continued the taper. But not after it had gone on for 3 weeks. He said I had to raise it all the way back up and stay there 6 months before attempting another taper.

(That was the plan, but within a week I got the hearing loss/vertigo thing and had to go back on high-dose pred :angry: )

How long has it been since you dropped to 7.5 mg? If your doc is okay with you changing your dose by yourself, I suggest you try 10 mg for a few days and see if the truck drives away....

[Terri]

Thanks Marta, I did receive the info.
Sangye, today is day 10 of the 7.5. I've been thinking the same thing of going back to 10 maybe for the week-end and see if I feel better.
Elephant, I went from 10 directly to 7.5 because my pills are 2.5 but I might try the 10 until Monday and ask the Dr. to prescribe me 1mg and slow down the taper.
I was on 7.5 for a year and we celebrated by going to 5. Within 3 months I started to flare so went back to 10 and have been on that for 5 months. I had been feeling about the best I had been physically so maybe I can't go lower then 10??? I don't know. I've even noticed more pain and swelling in my "bad " leg. Just a little. I've just thought of a good t-shirt picture.......a yo yo pred head weggie, that's what we are.....or 2 pred heads on a teeter totter....up & down, up & down.:w00t::w00t:

[Sangye]

Terri, if it's okay with your doc, don't wait to bump up the pred again. I think the jumps from 10 to 7.5 and 7.5 to 5 are WAY too fast. Especially after being on 7.5 for a year, you can't just jump down to 5 overnight.

When you're at the higher doses (20mg and up), dropping 5 mg is no big deal. Even a drop of 10-20 mg is fine for some high doses. The lower you go, the slower you have to go. Anything below 10 mg is very slow, and once you get to 5 it's a snail's pace.

[elephant]

Terri, you mentioned pain in your joints. I am wondering if you need to increase your other immunosuppressant ( methotrexate, cellcept, imuran) to keep the WG more quiet? When I was tapering last year my sinuses got worse, but no joint pain. My Rhuemy wants me off prednisone because of the damage it has done to my body, so we might increase the Cellcept if I start to show worsening sinus problems. For me.....Joint pain that lasts over 5 days is indication that the WG is still very active. But joint pain can mean other things too.

[Sangye]

Can you tell the difference between pred-tapering joint pain and Wegs joint pain? I can--totally different. Pred pain for me feels more flu-ish and I can't reproduce it by moving a joint. Wegs joint pain-- oy! Feels like the joint is badly sprained or the bones are broken. Moving it is very painful.

[Jack]

My method of telling the difference is -

Wegs pain - like I would imagine arthritis to be. Joints hurt all the time and in spite of moving to try to find a comfortable position it just won't go away.

Pred pain - more a case of joint stiffness. I used to notice it a lot after driving the car and I would then discover that I could not walk for a few minutes until I got everything moving again.

But perhaps it affects us all differently.

[Sangye]

It must affect us differently. I have arthritis in a few joints and it doesn't even come close to Wegs joint pain. Also, for me Wegs joint pain isn't just the joint, it's the joint capsule (ie ligaments that support and surround the joint).

[elephant]

The joint pain was weird, sometimes could not move the joint. One time my hand had a large bump in the middle and I could not move my fingers. That is when I got my first prednisone taper pack ( before being diagnosed). Then the shoulder arm joint...could not move my arm up or down. Another prednisone pack and it took several months for that to go away and then right after that the knee joint hurt so bad I could barely walk.
I also noticed when I would walk for 20 minutes my knees and behind my knees would hurt. This is all before diagnosis of WG.

[Sangye]

Yeah, that's how mine was, too. Also a general stiffness. If I stopped moving for even a few seconds, it was very painful all over to start again!

[Terri]

Ok, Sat. I went back to 10 mg from 7.5. So today is day 2 and even yesterday I had more energy, less pain but had trouble sleeping last night.
I'm going to call my doc in the am and see if he can prescribe me 1mg to taper more slowly. I'm also on 25mg of metx once a week. Does that sound about right?
Bactrim 3x a week, folic acid 1 mg

[Sangye]

Terri, what time of day do you take your pred?

I found that sticking to the same time every morning kept it from interfering with my sleep, even when I was on 40 mg. It's also helped my adrenals come online a bit faster, as our bodies naturally spike cortisol at our usual "wake up" time.

[Terri]

Sangye, I usually try to had my meds by 9 am, sometimes earlier if I get the chance.
I"m at work by 6:15 but not always do I have a chance to eat my breakfast before 8:30.
The week-ends I take them around 7:30-8:00

[Sangye]

Well the good thing is that as you get closer to 5mg, it won't interfere with your sleep anymore.

[jola57]

Terri, I'm at 3mg pred, just started a week ago after being more than 2.5 months on 4mg. Having stiffnes if not moving for a while and just general malaise, but otherwise feeling good. I am still on 10mg mtx. I take all the meds in the morning and mtx, sunday morning once a weed. With the lower pred i fing I have much less sleepless night, hurrrray. I take also vit b6, b12, d , calcium, folic acid, nexium everyday for stomach and actonel once amonth.

[marta]

Hey guys,

Just wanted to mention something on the book. If you haven't started yet, here's something that I don't think I put down well. If you can, try and have your story fall under the categories in the outline that would be super helpful. I still think it should flow like a story, but if you don't mind throwing the category headers in there to break it up that would be great (for those who have submitted don't worry about it, I will make it happen with my awesome, creative design powers - :wink1:) but if you haven't started yet that would be super helpful. My thoughts are based on trying to get two things done with the stories.

1. Have it be a real human story with the story part of it. When people are settled into being Weggies, they can sit back and read the humanity behind the disease. BUUUUT I also want it be a

2. Reference guide for the newly diagnosed who are in no state of mind to be reading personal stories. If we all organize the stories so that someone new to this game could at a glance look at each of our stories for something they are interested in - say meds we're taking or took at onset vs a flare vs maintenance (just as one example.) They can bring the various cases to their doctors and that way through our experience we're not only supporting the newly diagnosed but maybe even teaching a doctor or two what can be used in variuos cases based on the many variables this disease throws around like dirty laundry.

That was my cho-choo of thought when I was organizing the outline. I want this to end up being the 'go to book' for Wegener's and the more user friendly we make it - for various audiences and for various stages in their experience with WG - the more successful it will be.

If any of you have any questions, please don't hesitate to contact me. If I sound like I'm totally out to lunch, you can call me on that too.

[jola57]

I just need to organize and remember how it was.

[Thakator]

Back to the "eggies" portion of this thread. Yes, I've most assuredly heard about that old grass on the other side of the fence thing, but - - becoming an eggie sounds somewhat more appealing than being a weggie. No complaints though, just speculating.

And, Marta, if you are still reading this - - have you had the pneumonia vacine? It only protects you from one type of it (the contagious form, I think) and your condition may not allow you go the vacine route, but it does afford some protection and may be something to look into if your doc hasn't already covered it with you. My rheumy insisted on my getting it before she put me on the WG meds. Ron

[Minneapolismark]

I'd like to play too. Before I got sick I was a co-author/contributing author to a couple of books for Microsoft Press and had a blog with about 50,000 readers at its peak. I don't have much energy, but it would be wonderful to start clicking the keys again! Mark Schneider's SharePoint Taxonomy and Governance Blog (http://www.sharepointplan.com)

[ScreaminMeanie]

Marta, I'd be happy to share, too! hdfxstgal at gmail dot com

[marta]

Mark and Screamin'Meanie, I've have sent it out to you. Please let me know if you didn't get it and I will resend.

Thanks my wonderful Weggie Friends.