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GeorgiaInOhio
08-01-2009, 01:48 PM
Hello Everyone! Im new to the board. I was just Diagnosed with WG 2 weeks ago. I spent 10 days in the Hospital after having a year long sinus infection, and then suddenly out of nowhere my feet began to swell and hurt so bad I couldnt walk or even function. I developed the vasiculitus all over my calves and feet and finally was admitted to the hospital. I went in for foot pain, ended up with a lung biopsy, and here I am today, taking 80mg of prednisone, among others, still trying to absorb all the side effects. Im still having alot of pain and swelling in my ankles and feet, and the red spots just keep coming. Its been crazy and I dont really know what to do with myself. I have a 6 year old son and his father and I are really trying to get our lives back together after dealing with this out of no where. Im hoping the board will bring me hope. Ive never had to deal with anything like this before, never had a health problem... its all so life altering I dont even know where to begin... so I guess Ill just start with this, and a big HELLO!!!

Thanks!
Georgia:eek:

andrew
08-01-2009, 02:43 PM
A big

HELLO

to you too!! :D:D

Welcome to the group. Are you on anything other than the Pred? Cytoxan perhaps? You're right though, the WG is certainly life-altering. I can't even remember not having it. Thing is that you need to remember that you're going to have to adapt to a 'new normal'. That can be different for everyone but usually it involves taking things really easy at leat for the intial stages when your meds are being assessed and you're dealing with side effects etc. Hard to do with a kid I know but it's a necessity.

Best thing you can do here first is read the stories from other members. They can give you a lot of tips and background. Feel free to ask absolutely any questions you like or just log in to have a rant if you want :p

I'm going to pre-emt what Sangye is going to ask: have you got an experienced WG doc? If not, get one. It's vital to your ongoing feelgoodedness <- there you are folks, I just invented a word!

If your symptoms go on then your meds are probably going to need reviewing. This will probably be done anyway at your next doc visit anyway. One other thing...keep a symptom diary. If you experience any weird issues or ongoing ones such as the pain and the red spots (I have them too), write it all down. Also write down any questions that pop into your head. Take this diary to the docs when you have your appointment. I find that my mind goes blank when I walk into my docs office. He asks me how I am and I say 'fine thanks' because I can't remember the odd issues that I had in the previous couple of months since I saw him.

Again, welcome and like I said, ask anything you like.

Jack
08-01-2009, 03:38 PM
Hi Georgia,

Welcome to an exclusive little group! :rolleyes:

If you are still experiencing bad symptoms, your docs may not be hitting the disease hard enough. As Andrew mentioned, it takes a good, experienced Specialist and something more than Prednisolone to tackle this in the early days. Some docs hesitate to do this because the drugs required are so toxic, but it is necessary.

I think it took me several years to fully come to terms with my new condition and about the same to get it under control and in remission. It was a difficult time with huge lifestyle changes and mourning for my former self. However, I went on to adapt to my New Normal, had a good career and raised a family. :)

There is life after Wegener's! (but it might take a while to get there ;) )

It is early days for you and you have a lot to learn about your disease. Read a few of the stories on this Forum (they are all very different!) and then ask any questions you like, or even just have a moan! We all know how it feels.

crackers
08-01-2009, 07:08 PM
hello georgia.there's no point repeating what andrew and jack said so i'll just welcome you to our happy family.
john.

Sangye
08-01-2009, 11:52 PM
Hi Georgia,
Welcome to the group! I'm glad you found us but sorry you needed to, you know?

Andrew totally pre-empted me! :eek: It's true--the first thing I ask is if someone has a Wegs specialist. Please tell me you're going to Cleveland Clinic, or at least that their Wegs specialists are collaborating with your local docs. You're blessed to be so close to one of the world's few Vasculitis Centers. If you're not going there and you need help figuring out how, just ask. Ask anything! :)

Doug
08-02-2009, 12:16 AM
Georgia- Hello from Nebraska! Everyone up to this point has had just the right thing to tell you. I especially liked Andrew's "feelgoodedness". Australians are a clever lot, having invented "weggie" as well. You will feel lots of emotion and stress on 80mg of Prednisone a day. I kept a notebook I called my "Krazy Book" because of all the outrageous and - now - shockingly bizarre things I thought under it's influence. At one point, nurses warned me to cool it (i.e. what I said to the doctors) because the doctors were considering putting me in the psychiatric ward! I've attached links to some videos I loaded onto YouTube about my experience with the drug.:eek:

http://www.youtube.com/watch?v=JYAFOdHmO5M

http://www.youtube.com/watch?v=900svGOMdMs

http://www.youtube.com/watch?v=qAe1kPwosr4

This next one is about the changes long-term, low dosages of Prednisone bring about. It is a bit less up beat that we try to be on this forum, but the fellow concerned brings out quite a bit of information on the side effects of Prednisone. There are a few dirty words, but the worst dirty word, as we know, is Prednisone. Can't live with it, can't live without it. Hope these are of help to you, Georgia, and other new members of the forum who missed them when I first posted them.

http://www.youtube.com/watch?v=fxq00c3k1pY

Lady March
08-02-2009, 01:52 AM
Hi Georgia

Sorry you had to seek this site out as I and others have but one thing for sure I'm glad there is a place we can all go to for some additional info and comfort.

It is very hard caring for other family members when you yourself are ill. I am my husbands primary care giver for the past 3 years and at times it is very difficult trying to put him first and then take care of myself.

Hate the prednisone. But it is necessary. It has made me a starving hungry b...h. As soon as I finish eating the last bite of something I wonder "what can I eat now".

Try and take one day at a time and manage that one day as best you can.

Doug
08-02-2009, 04:14 AM
Lady March- I was the primary caregiver for both my elderly parents for several years. My father, now deceased went into a care center about half a year after I ended hospitalization for WG. Those were difficult months because I was not able to get around much myself. That contributed quite a bit to him having to go into the care center: I was unable to lift him up if he fell, and he fell often enough it was a concern.

Then my mother and I moved into an apartment associated with the people who run the care center, a senior housing project apartment, I guess you might call it, a duplex that is rather pleasant and only half a block from the care center.

In time, the needs of my mother grew greater than my ability to provide. My health took a turn south, I had a case of shingles my GP characterized as the worst case he'd every seen (in over 30 years of practice!): when you have WG, everything that happens to you has to be viewed in that context- I allowed myself to put my mother's needs over mine, and it made me vulnerable, as a weggie, to a herpes zoster outbreak! My family did an intervention after the second or third time I was hospitalized within a month, and had her moved to the care center, where she thrived as she couldn't under my care. P

POINT: you can't be Super Mom or Super Wife any more, unless you want to drag yourself down into more hospitalizations and set backs. Once you start to feel better- and you seem to be on the road to that happy day!- you will be tempted to over do it. Listen to your body at all times. Be honest with your family about how you are doing, and try to get them more involved activities that help the whole family thrive together (i.e. helping you when you need it!).

I don't want to seem gruff with you. I hope I can help you prepare yourself mentally for the time that you try to over-extend yourself and find yourself back in bed for your effort. It will be hard on your family, so, if it helps, vent on this forum when you feel those stresses and need to kill some small, harmless animal or yell at someone. It happens! Even to the nicest people.

Lady March
08-02-2009, 05:20 AM
POINT: you can't be Super Mom or Super Wife any more, unless you want to drag yourself down into more hospitalizations and set backs. Once you start to feel better- and you seem to be on the road to that happy day!- you will be tempted to over do it. Listen to your body at all times. Be honest with your family about how you are doing, and try to get them more involved activities that help the whole family thrive together (i.e. helping you when you need it!).


Thanks Doug I appreciate your concern and advice. It is always difficult to care for family members even if you are well and I know what you went through.

I do have a wonderful grown son and daughter-in-law who live only 2 miles away and they keep me in check. It seems my son has become my mother constantly monitoring me. They have been wonderful since my husband became ill and now with me even more.

Believe me as much as it bothers me to do it, there are times I have to not jump when my husband needs something and get to it later. I do rest often during the day and so far things have worked out with his care. Thanks again :)

By the way, I had shingles 10 years ago. What a treat!

Sangye
08-02-2009, 05:46 AM
Lady March, you sure have your plate full. I'm glad you have your son and daughter-in-law to help you. What is your husband sick with? Feel free not to answer that question! We all get to know each other so well in this group.

Georgia, I meant to tell you I have ankle swelling with Wegs, too. It was one of my early signs that something was wrong. (I had a ton of blood clots from Wegs also, so the swelling is a big problem for me.) Hopefully as your treatment works, the swelling will improve. The only good thing about it is that it tells you when you're overdoing it. Pred gives you a false sense of strength and masks the underlying weakness, so you can overdo it and not know until you're totally crashing.

Lady March
08-02-2009, 06:17 AM
Lady March, you sure have your plate full. I'm glad you have your son and daughter-in-law to help you. What is your husband sick with? Feel free not to answer that question! We all get to know each other so well in this group.

My husband suffered ventricle fibrillation at home. I called the ambulance and although they got here in minutes it took about 20 minutes to revive him but that was enough time for him to suffer anoxia (memory loss and confusion). It was a rough 4 weeks in the hospital and then another 3 at a physical rehabilitation facility. The first year was a horror with his memory as he believed so many things that weren't true. Such as his mother being alive, he believed he still worked and needed to call them and tell them he wasn't coming in today. We have been retired for sometime and only have one car because we didn't need two. He believed I sold his car without his permission because it was no longer there. And he does still confuses things.

He had a defib implanted but there is some blockage again and he had stated many times over the years to me and his doctor that he didn't want any surgery to correct it. 20 years ago he had quad by-pass.

Doug
08-02-2009, 06:48 AM
You are fortunate to have someone(s) to keep you in check. Reading what your husband went through, I can see where you truly have your hands full. Its especially good, then, that you also have your head on straight as well!:)

GeorgiaInOhio
08-02-2009, 11:50 AM
Hi again, and thanks to everyone who replied! I feel so welcomed! Thank you so much for the kind words and support. It means alot to me. Andrew, Doug, Lady, Sangye, and Im sorry if I missed someone... Its been a hectic trip so far. Im so new to all of this- every day im experiencing something else that takes me on an emotional roller coaster.

I love the idea of the symptoms journal! I keep a journal anyway, and having one simply for my issues with WG is a great idea. I have a million notes all over of what to ask the doctor and then i manage to forget everyone the second I hit the door. I started taking pictures about a week ago showing how the red spots and swelling are going each day. A few days ago I decided to start taking pictures of just myself, and I almost cried at how different I look from just a month ago. Oh my- its really alot to handle.

You are absolutely right saying the prednisone gives you a false sense of strength because I know I overdo it probably everyday. started having chest pains today and had to come home and take a nap. I got really short of breath and it freaked me out. Thought I was going to pass out in the store... started thinking, maybe i should right a note and put it in the cart incase I do, saying what I have, who to call on my cell phone... its very scarey.

I do have a team of doctors I am seeing, but havent been able to get to the specialist yet. Im hoping to have that taken care of this coming week. Unfortunately I have terrible insurance that tells me "those doctors arent in our network" so they want me to go to a UNIVERSITY of all places! NOOOOOO! The Cleveland Clinic has my information, my files, my records, everything, and apparently the doctor that MY doctor wants me to see actually wrote a BOOK on WG! I just have to get there! My fiance tells me everyday he's going to take me up there and just run me into the emergency and I think that may be what I end up doing. Im trying to change over my insurance but its taking so long, and if I go to the emergency that cant deny me treatment! Ill just have a nice bill to argue with insurance for about a months worth of treatment. I dunno. Sorry, im venting. You all said I could. lol. your in trouble now!

The specialist Im supposed to be seeing is Carol Langford- and yes, the Cleveland Clinic is one of the 5 hospitals in the country that specialize in WG so I guess Im lucky in that sense.

This disease is definitley showing me I am no longer normal. or at least, no longer what I thought was normal. Its so hard trying to accept that. my family doctor gave me a prescription for adivan and I try not to take it, but some days I just have too. I hate taking meds- I always have. I dont know how people can take some of this stuff for the fun of it. I detest it. But let me say, some days, that adivan is a life saver. Oh, and you asked what meds Im on- other than the prednisone I take Bactrim (I think its called) and Alendronate- but those are just to help with the problems from the prednisone. I know I should probably be on cytoxin but my doctor from the hospital said since it hasnt attacked my kidneys and i responded so well to the prednisone in the hospital I may not need it. Again, he is the one trying to get me into the cleveland clinic. he's a great doctor, calls to check up on me and everything. I see him again on Monday so I guess if the rash and swelling in my feet hasnt gotten better he is going to send me straight to the emergency room up there. So, wish me luck. I just dread spending more time in the hospital. 10 days about did me in.

Im very lucky to have a good support system at home with my fiance and friends. My best friend lives right next door- and even my son lays in bed with me some nights with his hand on my chest and tells me he is "pulling the pain out of me". God that just chokes me up thinking about it. He is a great kid. I feel so guilty for putting him thru this.

Well, I will stop rambling now. Im sure Ill have more to say in the future. I talk alot so be prepared. lol.

Thanks again everyone, its good to know Im not alone! I look forward to getting to know everyone, and the stories and posts are very helpful.
Talk to you soon!

Georgia

pberggren1
08-02-2009, 12:01 PM
Carol and Gary Hoffman are probably the best out there when it comes to WG.

Sangye
08-02-2009, 12:11 PM
Hi Georgia,
Vent away!!

It's so painful to see others go through these early stages. We can all remember what it's like. So much loss, grief, shock. I started seeing a therapist right after diagnosis, and I still do. I wouldn't have been okay without that.

I'm always upset when a PCP gives prescriptions for meds like ativan. In my opinion, those drugs should only be prescribed by psychiatrists, and only if they're following you closely. They're very powerful, and the combo with pred is complicated. I think they're very useful drugs, particularly with a diagnosis like Wegs. I just think it isn't in the best interest of a patient to give them out without advanced training and close follow-up.

I suggest you do whatever it takes to get to CC as soon as you can. I understand insurance issues (believe me!). But the doc who said no cytoxan because of no kidney involvement may be misguided. It might be true in your case, but it isn't typical. Personally I wouldn't accept that unless I heard it from a Wegs specialist, like Dr. Langford (who has a wonderful reputation).

One suggestion : Make an emergency card for your wallet, with your diagnoses, drugs (incl dosages), risk factors, drug allergies, doctor names and numbers, emergency contacts, etc.... I've had to use mine a couple times in ambulances when I haven't been able to talk due to pain.

I hope you don't have to go back in the hospital, but if it's necessary to get the Wegs under control better, then it'll be time well spent. Keep us updated. Now that we know you, we'll worry like mother hens if you don't keep in touch! :)

andrew
08-02-2009, 12:16 PM
I echo what Sangye said and would add that you might like to think about getting a medicalert bracelet/necklace. I have one and many other weggie's do too.

GeorgiaInOhio
08-02-2009, 01:03 PM
Wow I never even thought about a med alert bracelet. man, there are alot of things I have to think about. Thats something i wouldnt have even thought of. Im going to make a card for my wallet right away, and see about getting something made up into jewelry or a keychain at least. Thanks guys! Ill make sure and keep posting. I took my laptop with me to the hospital last time so I could investigate everything I heard the doctors discussing behind the magical curtain that stops all sound! lol. I was researching wegeners before they actually came out and told me thats what they had decided on. i new thats what I had before they were even convinced!

i wont let you worry! and I will go back to the hospital if I have too. I know i need too- I just have to make myself. :D

off to bed, Ill check back tomorrow!
g'nite!
Georgia

Jack
08-02-2009, 04:23 PM
Hi Georgia,

I can only agree with what has already been said. There is some very good advice there.

I share Sangye's concern of your Pred only medication. I know I should not try to diagnose and prescribe over the web, but I do know that the early attempts at treatment for Wegener's used only steroids and although they delayed the symptoms of the illness, they were ultimately unsuccessful. :(

My own experience was that I spent my first few weeks in hospital receiving some very agressive treatment, but it took away my symptoms within days when I had been at death's door. This got my treatment off to a good start and I was better able to cope.

Doug
08-03-2009, 04:41 AM
Ditto Jack's comments about aggressive initial treatment with Cytoxan and Prednisone.

What a fortuitous bit of thought on your part to take your laptop to the hospital with you! I had to rely on friends and nurses to bring in material they copied off the internet.

Actually, nurses were almost universally enthusiastic for the opportunity to work with a weggie for the first time. They proved to be my best source of new information on WG and treatments. :)

andrew
08-03-2009, 05:19 AM
What a fortuitous bit of thought on your part to take your laptop to the hospital with you!

Too right! I pleaded for access to a computer while I was stuck in hospital. No one would bring me one or even any info on the disease. They thought it'd just depress me :D Had no mobile internet on my phone like I do now so I was stuck....until I got home :cool:

Doug
08-03-2009, 05:28 AM
They thought it'd just depress me :D

Can you imagine that?!

andrew
08-03-2009, 05:50 AM
Can you imagine that?!

Haha...noooooooooooooooooo.

I can understand their reluctance but I wanted to know what I was going to be fighting so I could body-slam it into next week :p

Jack
08-03-2009, 06:33 AM
The hospital beds in my area all have their own terminals for TV, radio, telephone and internet. They are provided by a non-NHS company for a small fee, but are very s-l-o-w.......
I expect they think you have plenty of time on your hands! :rolleyes:

Luce
08-03-2009, 06:41 AM
Ahh Patientline Jack - it certainly kept me busy and ensured I had regular contact with other humans, mostly their technical staff!

It's a lovely idea and the tv side is great, the phone side is expensive but the internet just isn't worth the effort of working out how to use it.

I did manage to fire off a couple of emails, after 3 or 4 tries each and Facebook was out of the question!

Sangye
08-03-2009, 06:55 AM
I was driven to the ER by my pulmy, who told me the Wegs dx on the way. I didn't own a laptop. So the whole time I was in the hospital, I had to rely only on what the docs told me. My naturopath confirmed there was no way to treat it holistically. My only computer was in my office, 5 mi from my house. It had dial-up! I was so sick for several months, that I'd only get to my office once a week to check messages and do online banking.

I guess it's a good thing I didn't know about online support groups. It would have been impossible to participate. But my docs were not truthful to me about Wegs or the drugs-- partly deliberate and partly ignorant. I really suffered as a result. I couldn't figure out why I was still so sick, when they were telling me the treatment (cyclo/pred) wasn't that harsh, and the disease was under control.

So for much of the first year, I looked like this : :confused: :mad:

GeorgiaInOhio
08-03-2009, 02:10 PM
My naturopath confirmed there was no way to treat it holistically.


Although I believe he may have told you that, I have a hard time believing thats true. Im a firm believer that there is a natural cure for everything. I was just thinking about making a post on here to see what all natural remedies if any, anyone had tried for some of the symptoms, or even the medications. Ive been researching my butt off and I truely believe that an auto immune disorder can not only be reversed, but cured.

I just dont think the body attacks itself. I think its just too weak to fight off the infection, which I do believe Wegeners is either an infection, bacteria, virus or a parasite attacking the body. There has to be a solution. It just hasnt been found yet because it is so rare. I will conquer this, and I just refuse to have to live my life on these horrible medications with all these side effects.

Im going to see my doctor tomorrow to see if he thinks I should go to the Cleveland Clinic emergency. Im so dreading it. I dont want to be in the hospital again, I dont want more medication. Dont worry guys, Im not going to refuse treatment if the doctor tells me its the only way, but I will continue to keep looking for a better solution. Im still having horrible foot pain and swelling. My feet are purplish grey from the vasculitus. I can barely touch my toes because they hurt so bad... If more medication will stop this for now, Believe me I WILL TAKE IT. I spent most of the day crying in pain from stubbing my toe against a PAPER BAG. Ya, thats right. A paper bag. Then a cord from the vacume brushed against another toe and that was another 15 minutes of intense pain. So something does need to happen. Im just so afriad of going back into the hospital... more needles, more bruises, more meds. :eek:

My son started crying when i told him i had to go to the doctor tomorrow and there may be a chance I have to spend some more time in the hospital. It about kille me. I have a very strong feeling its going to happen. I just dont know what to do. I will have my lap top tho just incase! LOLOLOL. I dont know how id survive without it. haha!

That hospital with the whole bedside tv/internet thing sounds good to me, but luckily they have free wi fi so I dont have to pay for it. The TV was enough of a bill for me. blah!

Well, I think im gonna try to get some sleep tonight. I did so enjoy watching Dougs You Tube videos about being up on the prednisone, baking a cake, cleaning, and then crashing later. lol. That is me to a T! Funny thing is, my neighbor/best friend has a bad case of poison oak so we are now prednisone buddies till she tapers off. :D So I call her around 5am while were both wired. I cant get to sleep till after midnight, then im up again at 4:30. Its kind of ridiculous, but what can you do. Take a sleeping pill? Please. Ya, gimmie another pill, thats exactly what I need. lol.

ah well, another night, another wegful morning. :D (hey, i invented a word andrew! lol)

night all,
Georgia

Jack
08-03-2009, 04:24 PM
Not sure what research you have been doing Georgia, but nothing I have read or my own experience lead me to your conclusion. The mechanisms of the disease are becoming well understood even though the cause is still elusive.

From your description, it sounds like your disease is far from under control and a stay in hospital may well bring benefits. If you are to come through this, you perhaps need to put your own well being first for a while. The vacuuming can wait!

Sangye
08-04-2009, 04:30 AM
Georgia, when I referred to my naturopath's comments, I meant while I was in the hospital and unable to do my own research. Like I said in response to your other post, I and several of my holistic docs have done extensive research and found nothing regarding Wegs.

I used to think there was a natural cure for everything, too. But given that many diseases have unnatural causes, I no longer believe nature can cure everything. That may sound like a defeat, but I see it as acceptance of the facts.

Doug
08-04-2009, 06:32 AM
[QUOTE=
ah well, another night, another wegful morning. :D (hey, i invented a word andrew! lol)

night all,
Georgia[/QUOTE]

Is anyone keeping a lexicon of all these new terms? :)

Sangye
08-04-2009, 06:34 AM
Tag-- you're it! :D

Doug
08-04-2009, 06:39 AM
Brutal:

WEGFUL:)
WEGGIE:)
THAT ONE ANDREW CREATED THAT I CAN'T REMEMBER JUST NOW:)
WEGALICIOUS (that's one I just created- because we are! Ha!):)

Sangye
08-04-2009, 06:43 AM
And Weggie Wobbles.

Doug
08-04-2009, 07:24 AM
Brutal:

WEGFUL:)
WEGGIE:)
THAT ONE ANDREW CREATED THAT I CAN'T REMEMBER JUST NOW:)
WEGALICIOUS (that's one I just created- because we are! Ha!):)

and Weggie Wobbles... Yes, a great one. Thanks, Sangye!

GeorgiaInOhio
08-04-2009, 02:28 PM
Well, Its just my nature to research the crap out of something until I find answers so that is what I will continue to do. My doctors apointment went well- I should be in with the specialist at the cleveland clinic within the next 2 weeks. My doctor dropped me down to 60mg of pred. because of the side effects im having. I havent been sleeping much at all. So we will see how that goes.

I dont know what a 20mg drop will do, but im hoping since I havent been taking it long it wont be so bad. I just wanted to keep you all updated. I do have another question though- I may post a new thread but Ill ask here too-

Does anyone have pets? A friend of mine is telling me i need to get rid of my cat because of the germs. Ive had the cat 11 years and I dont see the harm because hes very clean and my fiance cleans up his litter now so I dont have to be around it. The doctors have asked me if I have an animal but have never told me to get rid of it. What do you guys think? I just cant see one animal being that much of a danger. But I dont know what all the risks are, so throw those ideas at me now. :D

Thanks!

Doug
08-04-2009, 03:52 PM
Several people on this site have not only one, but two dogs, for example. One has three dogs. Take reasonable precautions, and you should be OK. No doctors brought this subject up with me, but I always take the "wash my hands (or whatever else came into contact with the critters!) before putting my hands next to my face or eating" approach with animals. That isn't much diffrent than before I came down with WG! The 20mg drop seems extreme to me. Look out for symptoms returning. I hope you don't experience any, but, as always, contact your doctor if you do feel you're losing ground.:)

crackers
08-04-2009, 06:46 PM
regarding the pets question,we have two dogs and no doctor has ever mentioned pets.normal levels of cleanliness are more than adequate to deal with germ issues.pets can be theraputic.thanks to WG i spend most of my time in the house so the company of my two four legged friends is a great comfort to me.so don't dump the cat he's done nothing wrong plus the stress involved wouldn't be good for you either.
john.

Carol
08-04-2009, 08:23 PM
Hello Georgia,
It's been 15 months since I was diagnosed. I'm now doing most things I want to do with my life but Wegs looms not over me anymore, but beside me. My best advice to you is to "convaless"(that spelling doesn't look right). This was a new concept to me - it took a while to take form. My worst time of the day is generally between 10 and 11am - no idea why. I have found that meditation during this time is most effective in dewobbling me - I get very wobbly and shakey. I have found that I just "remove" myself from the world when I need a rest - this might be to go and have a rest(usually a sleep) in a lounge chair at the restaurant, back into my caravan when everyone else is around the campfire, even while waiting for a dentist appointment, and just recently in the car in the country in Dubai with the outside temeperature at 48 degrees and the car running with the air con on. I do have a rule that I never sleep in my bed during the day. I have 4 other sleep points around the house. Your family will need to adjust to this. My husband is only to glad for me to rest/sleep/meditate because he knows what a difference it makes. I'm now down to 7mgs of Prednisolone - be very careful to go down slowly. I cannot go down by 5mgs in one go. It affected my eyes - very scarey. So all the best on you your Weegie Way. This site has been a big part of my getting well. Regards Carol, Australia.

Sangye
08-04-2009, 11:00 PM
I agree with everyone else-- keep the cat. Your docs might have asked about pets when trying to rule out other diseases. There are several hypersensitivity diseases that create similar lung symptoms to Wegs. They're easily cured by removing the cause-- usually an animal.

You couldn't pry my two dogs and my cockatiel from me! They bring me so much joy.

Sangye
08-04-2009, 11:28 PM
Georgia, I understand about researching like that. I'm the same way! I encourage you to do the research for yourself. Just remember, if it doesn't mention Wegs by name, it isn't Wegs research.

Doug
08-05-2009, 12:48 AM
regarding the pets question,we have two dogs and no doctor has ever mentioned pets.normal levels of cleanliness are more than adequate to deal with germ issues.pets can be theraputic.thanks to WG i spend most of my time in the house so the company of my two four legged friends is a great comfort to me.so don't dump the cat he's done nothing wrong plus the stress involved wouldn't be good for you either.
john.

I don't know how I missed dog no. 2 in you avatar! A minature schnauzer?
It's a bit hard to tell.

crackers
08-05-2009, 03:40 AM
yes doug a mini schnauzer.she is a bit hard to spot next to her big brother but they are best buddies and are inseparable.
john.

Sangye
08-05-2009, 07:04 AM
I never saw her either! I thought it was Big Brother's butt. Don't they look cute together, all cozy like that!

Doug
08-05-2009, 09:25 AM
Yes! You should start a photo album, John, and put that photo in it so we can see your dogs more clearly. I've never met a miniature schnauzer that wasn't somebody's best buddy. They arfe terrific dogs! For that matter, so are German shephards. (I see I hit an extra key in "are". I'm leaving it though, for obvious reasons!) :)

Cindy M
08-05-2009, 12:05 PM
Georgia, I am glad you found the site. The people here are very friendly and helpful. Hope all goes well with you.

GeorgiaInOhio
08-05-2009, 12:54 PM
I really appreciate all the advice and info you guys give me. Im glad to know Im not the only one who wants to keep my pet! lol. My friend is a worry wart and I do believe the doctors were trying to rule out some other problems.

I will continue to research everything possible. I know its a long road, and Im glad I have people to talk to. :D

Doug
08-05-2009, 02:59 PM
I like your signature: On a Mission for Remission! :):):):) That kind of determination and positive attitude will help you a great deal!

GeorgiaInOhio
08-05-2009, 11:30 PM
I like your signature: On a Mission for Remission! :):):):) That kind of determination and positive attitude will help you a great deal!


why thanks!

crackers
08-06-2009, 10:24 AM
doug took your advice and put some photos in an album.well sue did she's the brains in this operation.
john.

Doug
08-06-2009, 11:33 AM
That was worth the wait, John! Baley and Holly are beautiful dogs, clearly loved and well-cared for members of your family. I especially liked the one where Holly is looking back over her shoulder (the beach photo). I see, too, what you mean about how tight their buddy-hood is: It must be like having a cat follow you around for Baley! I hope the other pet owners take a hint. If you used your pet's photo for an avatar, you probably have other digital pet photos to share. No pets, I had to settle for self-portraits and quirky photos, all of which alarmed the weggie community....!

Sangye
08-06-2009, 12:36 PM
John, how is Sue doing? I keep meaning to ask.

crackers
08-06-2009, 06:10 PM
doug.....thanks for your kind comments.holly and bailey are great companions,not only for each other but for me too.i wouldn't be without them.
sangye.....as for sue,the woman is an absolute saint.it's hard enough to accept that your previous life has gone, thanks to WG,as a sufferer but for the partners and families of weggies it must be doubley so.she is always there for me while having to continue to work at the local hospital.i know at times it does get to her but she doesn't take it out on me even though i'm the one to blame.in fact on the days when i'm feeling sorry for myself she soon snaps me out of it.she is such a caring person i don't know what i'd do without her.
john.

Sangye
08-06-2009, 11:09 PM
How wonderful that you have each other. I'm always so happy to hear that there's more love in the world than I knew about. :)

Doug
08-07-2009, 12:46 AM
doug.....thanks for your kind comments.holly and bailey are great companions,not only for each other but for me too.i wouldn't be without them.

De nada! It's always great to know a fellow weggie has his or her support groups (human or not!) in place. I've been blessed with relatively few of the vicissitudes this disease can give [at which time Doug knocked on his head and said "Knock on wood."], yet I fully know how support groups of mine got me through some very deep waters at the start and even deeper waters with the herpes zostar disaster: they are a great blessing not to be taken for granted! :)

RCOSSIO
08-09-2009, 01:11 AM
Georgia,

I hated pills as well, but I did take Lyrica for about 6 weeks for the throbbing pain in my feets as well as Vitamin B12. Hopefully this can help you get through the first 3 months. I have not taken Lyrica again for after the initial diagnosis of WG...so understand it will only help initially and then you can taper off the medication completely for the pain.

GeorgiaInOhio
08-09-2009, 06:55 AM
Interesting, I have had a few other people in the past few days mention B12 to me. My best friend is B12 deficient and has to get a shot once a month. She suggested it as well. I will have to look into that and ask my doctor if its something he would ad, or if I can just get some myself. Thanks!

coffeelover
08-10-2009, 12:01 AM
Georgia,

We have not met yet and I personally want to welcome you. I love your positive attiude "on a mission for remission" signature closer. You inspire us all!
I believe the Folic Acid my rheumy prescribes for me takes care of the B 12 issue? Am I right you docs out there?
Lisa

GeorgiaInOhio
08-10-2009, 01:55 AM
Georgia,

We have not met yet and I personally want to welcome you. I love your positive attiude "on a mission for remission" signature closer. You inspire us all!
I believe the Folic Acid my rheumy prescribes for me takes care of the B 12 issue? Am I right you docs out there?
Lisa


hey thanks! thats very nice of you to say and i hope to get to know you better! Everyone here is so nice!

I have read online that folic acid is a good supplement, but didnt know it would also do the same as B12. Yes, anyone who knows about this, let me know. I could ask my doctor tomorrow as well, i was going to call about the B12. Thank you!

Doug
08-10-2009, 04:29 AM
I was on subcutaneous injections of it for a while. I didn't feel instantly better, as some people claim, but, in time, my bloodwork indicated an improvement. It's stored in the liver (poor liver! no wonder it rebels so much!), and long illnesses or chronic illnesses like ours are what ultimately draws it down to tragic levels. I hope someone else has other comments to make on this- this feels a bit unfinished to me for some reason....:)

Sangye
08-10-2009, 07:09 AM
I believe the Folic Acid my rheumy prescribes for me takes care of the B 12 issue?
Lisa
Nope. They're two different B vitamins. The only connection between B12 and folic acid is that a deficiency of either can cause anemia.

All the B vitamins are water-soluble, so they're not stored in the body. (I don't know what you meant by the liver storage thing, Doug)

One note for Weggies : B12 requires stomach acid to absorb it, so if you're taking acid blockers, you may need to supplement B12.

Doug
08-10-2009, 09:33 AM
I had B12 shots for a short time after I was taken off subcutaneous injections of Procrit . I was pretty certain I was told B12 was stored in the liver and long-term illness depleted it, leading to anaemia. See the attachment:

Vitamin B12: Vitamins: Merck Manual Home Edition (http://www.merck.com/mmhe/sec12/ch154/ch154h.html)

GeorgiaInOhio
08-10-2009, 10:17 AM
Interesting, lots of great info in this thread! I read the link doug, you are right, it looks like it is stored in the liver for later use. I had no idea. I wonder if I have any left. lol. Im going to call the doc tomorrow and see what she suggests. I guess the family doc would work for this call. I have a feeling she'll tell me i dont need it but maybe it wouldnt hurt to get a test to see if its something that may help with the nerve damage. Im wondering how much it would IMPROVE the nerve damage as being compared to just the deficiency being the cause of it. hmmm... Im wondering if it would since the increase in stomach acid and use of the medicines to fix that would be depleting my storage of it... very interesting.

Well, we will see what the doc says and what would help. Im up for anything to get rid of this nerve damage. my gosh, its driving me insane.

GeorgiaInOhio
08-10-2009, 10:18 AM
ah, just saw this at the very end of that website:

Anemia usually resolves in about 6 weeks. But severe symptoms due to nerve damage—for example, dementia in older people—may not resolve.
Last full review/revision August 2007 by Larry E. Johnson, MD, PhD
http://www.merck.com/site_images/mm/s.gif

well if my nerve pain doesnt stop im going to have dementia, so I may be in trouble!:p

Sangye
08-10-2009, 10:37 AM
Doug, yes ideally the liver can store B12 for a few years. That's assuming enough of it gets absorbed in the first place. When you look at the list of causes of deficiency, you can see why B12 deficiency is very prevalent in Western countries. So in reality, very few people have much, if any B12 stored in their livers.

Unless you have overt B12 deficiency symptoms, your blood levels would still be in the normal range, because you're getting some in your diet. So MDs wouldn't accept the notion that most people's liver stores are low or non-existent until the number goes out of range completely.

GeorgiaInOhio
08-10-2009, 11:12 AM
ahhhh i see said the blind man

jola57
08-11-2009, 03:18 AM
True, my deficiency seems to be corrected with taking of B12 and last for a while if I don't take it. As to nerve regenerations, well tough cookies Georgia we are on our own. since having the dropped foot last year, I now have limited range of movement in my left foot, but still have neuropathy, so much so that when I lost my big toe nail :eek:at the airport there was no pain, later when it was being cleaned in Poland the surgeon kept asking are you in pain, and just couln't believe :confused:when I smiled beatifically and said no. well the nerves will go back to some function but as to total regeneration - not possible. Well we'll just go senile together.:D

Sangye
08-11-2009, 03:22 AM
Jolanta, I hope airport security didn't fine you for leaving body parts in the airport like that. I mean, that could really spoil a good trip. :D:D

jola57
08-11-2009, 03:27 AM
Ah, the blood trail was fun, and the looks I got. Priceless.

RCOSSIO
08-11-2009, 12:07 PM
Jola..did you by chance leave the toenail as part of the clue in "Escape the Room"....hmmmm think Richard :eek:

Sangye
08-11-2009, 12:22 PM
That's it! We can use the toenail to pick the lock!

GeorgiaInOhio
08-11-2009, 12:38 PM
as lovely as the image of the lost toenail is... and believe me, that is an image ill be taking to bed with me THANKS. LOL.... My doc said the nerve regeneration is possible, but doesnt always happen, and it depends on how severe it is. I orignially had bad nerve damage in both feet, the middle 3 toes on both, and the big toe on my left. As of today, the right foot is practically normal. I still get a tingly now and then, but even the vasculitus has seemed to just go on the left foot. I dont know why lefty is taking the brunt of it all- possibly because when I was 19 I sprained it pretty bad, resprained it again a few months later to where I went into shock, and then again about a year later. I was told one day Id end up really messing it up if I kept it up. Its the week ankle, so I think thats why its giving me the most problems.

So I have hope it will come back a little since the right foot is almost normal. I did notice though that the more i work on the computer (my job is being on the computer, so that sucks) but my pinky fingers start to cramp and start bending inward, then get very numb. I dont know if now im starting to get carpal tunnel or if its just more nerve damage. :( anyway, as long as i dont have a bloody nub from a lost toenail, I guess I can live with it. LOL.

Why is there no emotiocon for getting sick? :eek: that'll do. lol

threads off subject now. time to start a new one! right sangye! lol

Sangye
08-11-2009, 12:56 PM
threads off subject now.

Well, I think it's safe to say that ship has already sailed.... :rolleyes:

We went from newly diagnosed to a schnauzer hiding in an avatar, to John's/Jack's/Doug's wife to a bloody toenail. Yeah, I guess that's about all one thread can take. :D

GeorgiaInOhio
08-11-2009, 12:58 PM
Well, I think it's safe to say that ship has already sailed.... :rolleyes:

We went from newly diagnosed to a schnauzer hiding in an avatar, to John's/Jack's/Doug's wife to a bloody toenail. Yeah, I guess that's about all one thread can take. :D


amen to that....
and another one bites the dust! :rolleyes:

jola57
08-11-2009, 01:37 PM
Ah well another will grow just as fast as my new toenail LOL

crackers
08-11-2009, 05:48 PM
well it's another one for the list of weggie symptoms : easliy distracted.
john.

Doug
08-12-2009, 01:00 AM
well it's another one for the list of weggie symptoms : easliy distracted.
john.

:) What?!



(I have to throw some stuff in because my message was too short, but lengthening it ruins the comedic effect. Yikes!)