Croaky throat

[DEE]

For the last couple of weeks i have woke with a croaky throat which does not go away
fed up of people asking if ive got cold which i have not
its not sore but sounds as though ive got a deep voices
going to see wg consult for check up wednesday just wondered what you guys thought DEEx

[Jack]

If it is croaky, then perhaps you have a frog in your throat? ;)

If you are having breathing troubles, you tend to breath through your mouth when asleep and this dries things out. Is that the problem?

[DEE]

could be that Jack as my nose is stuffy at the moment too
tried drinking more that does not help
if its a frog i wish he woild hop off :flapper:

[elephant]

:hug3:Dee, your suppose to kiss the frog! :) Do you have a humidifier? That could help. I am glad you are seeing the wegeners specialist wed, it is always good to check these symptoms out. Hugs...

[DEE]

Kiss the frog Elephant with my look just lately can you imagine :ohmy:
was going to see wg consult wed about starting Imuran !
so will ask him then
we have talked about getting a humidifier (sp) but my room is quite small
but maybe we should talk about it again

hows your eye doing !

[Sangye]

Dee, did the Cellcept give you heartburn? Acid reflux (with or without symptoms) can irritate the vocal chords and cause hoarseness. Otherwise, I'm voting for the dry throat hypothesis. I'd also like to see you kiss a frog. Just 'cause. :flapper:

[DEE]

no cellcept just kept me in the bathroom day and night and my cough returned .
stopped taking ten days ago hoarseness is a good way to discribe it
kiss a frog not with my luck on saturday garage electrics went off , extractor fan in bahroom broke went out had good lunch went outside the car would not start and been worried about son uni results and just to add to the mix hubby had to complete an exam paper by the monday !!!! what do we say about dont get stressed :w00t:
so would be afraid to kiss the frog just now :ohmy:

[Psyborg]

My voice is significantly different since I developed wegs. I had suspected it was due to the stenosis, but I guess I'm not 100% sure of that. It's pretty bad in that it is deep enough that people cannot understand me on the phone. I previoiusly had a relatively higher pitched voice for a man, and it's become very bass these days.

[Sangye]

My voice become very hoarse when I'm tired. My Wegs ENT has checked it out thoroughly--nuttin'.

[elephant]

Wegeners like's to play hide and seek, but :rolleyes1::w00t::ohmy:when they're too many of them (WG) they can't find a hiding place.

[Sangye]

There's always room in my neck folds. :rolleyes1::ohmy:

[marta]

I too have strange croaky voice from time to time and it lasts for a day or two and then vamooses as mysteriously as it appeared. When I was first diagnosed it happened twice where it was quite bad - almost like laringitis (sp?) and it concerned the internal med doc who led the team that diagnosed me (my equivalent of House). He told me if it happens again to contact him, but it never came back to the same degree. Now it just gets croaky (I love that word) and then hops off a short while later and it's quite sporadic with nothing obvious triggering it.

[pberggren1]

I went from a little boys voice, and looking like one too, to having a much deeper voice after Wegs came along. And unfortunately I did not retain my boyish good looks thanks to pred. My voice has been croaky over the years but it comes and goes depending if I have sinus, lung, or throat stuff going on.

[DEE]

Now it just gets croaky (I love that word) and then hops off a short while later and it's quite sporadic with nothing obvious triggering it.[/QUOTE]

i wish mine would hop off too :flapper: maybe because my sinuses are playing up to .

[elephant]

Dee do you feel like there is mucho sinus drainage going down your throat?

[DEE]

hi Elephant no not really
sinus full on left side aliitle painful but washing out seems to help
been to see wg consult morning he was more interested in throat than sinus
started 100gm of Imuuran today !! going to increase to 150gm in three weeks . have to have full bloods done every other week .
if my throat is no better in a week we are going to contact ENT ,said we have to see if its meds changes that causing it , but if it gets worse to call him straight away
fingers crossed new meds onboard :mellow:

[Geoff]

Good Luck DEE with your new Meds.

Did you come away from your appoinment feeling reassured or with more questions than answers?:confused1:

[DEE]

thanks Geoff
im very lucky with wg consult i have because things have been rough lately i see him every three weeks and have daily contact with him or his secatary if needed
it was not his clinic day today but so we can have more time he see me out of clinic spent one and half hours with him . he will ring friday to see how meds doing and next wednesday to check weekly blood results that i have gone with my gp
i see my gp every two weeks at the moment
today i took a special friend with me she hears me talk so much about my consult she came with me to meet him ,he even had time to explian a few things to her to she thought he was one of the best :thumbsup:
i used my diary questions and got my answers
i always feel more relax after talking to him DEEx

[Geoff]

Nice One DEE,

With that sort of attention and care we can all be like Cindy and climb Everest!!
:biggrin1:Hang onto your WG spec with both hands, he sounds a real star.

[Sangye]

I think everyone with Wegs climbs their own Mt Everest.

[Jack]

I agree Sange. In fact I have a few issues with the whole Mountain Climbing and Sports related side of presenting disabilities and I sometimes wonder if it gives a distorted impression of what it is like to live with more than your share of physical problems. I remember that when I first had my transplant, someone asked me what sports I would be taking part in! The Transplant Games was obviously their only connection with the situation. On the other hand, I do applaud those who have the energy to do such things and any raising of awareness must surely be a good thing? Perhaps people just need reminding that for some, even getting from one room to the other requires a little planning. :(

[DEE]

yes i know how lucky i am to have the wg consult i have and yes Jack its easy to remember the highs
.not the struggle to get ready intime to get to the appointment ,the pain im now in because of the walking and the days when i cant move out of chair far because of swollen or painful joints
climb everest maybe but not to day:glare:

[pberggren1]

I agree Sange. In fact I have a few issues with the whole Mountain Climbing and Sports related side of presenting disabilities and I sometimes wonder if it gives a distorted impression of what it is like to live with more than your share of physical problems. I remember that when I first had my transplant, someone asked me what sports I would be taking part in! The Transplant Games was obviously their only connection with the situation. On the other hand, I do applaud those who have the energy to do such things and any raising of awareness must surely be a good thing? Perhaps people just need reminding that for some, even getting from one room to the other requires a little planning. :(

Very well put Jack.

[Geoff]

I think everyone with Wegs climbs their own Mt Everest.

I quite agree Sangye, however I will continue to say that I find Cindy's achievement 'Inspirational', the same way as I do when I see say 'athletes' at the Paralympic Games. A metaphorical comment such as 'climbing Everest' is intended to inspire or act as a 'pick me up'. Perhaps it got lost in translation across the Atlantic. I realised from my very first visit to this web site that this illness has affected people in a variety of ways, most of them seemingly worse than me at that moment in time. Initially I could not relate to this site with regards to my personal experiences and my own abilities to continue life in a reasonable fashion. However; my 'honeymoon' period has expired and I realise that despite what I want to happen, my condition will change as and when MBF says so!! Despite that, I will not get downhearted (Had the blues with the tears) and will continue to concentrate on the 'positive' aspects that exist all around us. Call me a dreamer or whatever but humour and my propensity to 'dream' or fantasise will inspire me and keep me going (I hope!!) Phew:eek:

[Sangye]

Geoff, I didn't mean that we shouldn't be inspired by such achievements. I was just pointing out that everyone's struggles and achievements are incredible, even if they aren't newsworthy. It takes the exact same courage and determination to walk across the room when you're in severe pain. When I've been told I have to go back on ctx or high-dose pred, I've had to summon strength from the deepest places. Before I had Wegs I was extremely strong and active. I challenged myself physically. I can tell you that I never had to summon the kind of strength and courage that I do with Wegs.

My therapist is always trying to get me to see this. I tend to just get through things and not give myself credit for the hard work and courage it took. I sense that's true of many people on here who don't have the external reward of summiting a mountain or running across a finish line. I also agree with Jack's comments.

[Geoff]

. I sense that's true of many people on here who don't have the external reward of summiting a mountain or running across a finish line.

There is also the danger here of assuming 'what if...' when it comes to dealing with Wegs and external rewards, i.e there is no way in the world would I summit any mountain, pre or post WG, as I have a fear of heights!
The other relative issue is the almost absent sign of 'external' syptoms with Wegs (with apologies to all 'Panda Eyes' and 'Moon Faces'). You are correct Sangye when you say that the greatest hurdles we have to clear are in our mind and that we all need to draw upon reserves of courage and fortitude that will not guarentee us a place on any podium.:mellow:

[Jack]

Yes, we do have to draw on reserves of strength, not only for that walk across the room, but in order to keep doing it year in year out when half of the steps taken seem to be backwards. I get a little cross when I read things like "You can do anything if you put your mind to it". Very often YOU CAN'T! :( These people don't know what it is like to have to struggle through each and every day.

Rant over for now! ;)

[Sangye]

Geoff- good points.

Jack, I second your rant. We can change our minds about anything, but there are such things as physical limitations.

[jola57]

It is easy to forget how we felt when diagnosed when we get better and close to remission. I had to look at my pictures to remind me how I realy looked back when i was OK, but compared to how I felt when I was diagnosed, I am a running quarterback. For people like Cindy their limitations are only in what they can't do normaly and are not measured by our standards. We all know that wegs affects us differently, and just like the paralympic games, we all come with different disabilities but ALL have wegs. I guess for someone in the media spot light it would be good to show others of us that are far more affected by the disease than them and are not able to function day to day let alone perform physical feats. Just to show how devastating the disease is.

[pberggren1]

It is easy to forget how we felt when diagnosed when we get better and close to remission. I had to look at my pictures to remind me how I realy looked back when i was OK, but compared to how I felt when I was diagnosed, I am a running quarterback. For people like Cindy their limitations are only in what they can't do normaly and are not measured by our standards. We all know that wegs affects us differently, and just like the paralympic games, we all come with different disabilities but ALL have wegs. I guess for someone in the media spot light it would be good to show others of us that are far more affected by the disease than them and are not able to function day to day let alone perform physical feats. Just to show how devastating the disease is.

I agree with you Jolanta. I have told people that I have Wegs and sometimes I get a response like, "Oh ya, I know that one, my aunt has that, not too bad though." Statements like that kind of bother me sometimes. But then I have realize that everyone is different and some people are just more compassionate than others and show more interest. Wegs definitely affects us all in a unique way, even though we have many areas of our body that are affected the same. We can have similar involvement like kidneys and nose, but feel totally different. I don't know if I am explaining this right or if it makes sense to anyone else.

[Doug]

Often times, the auntie actually has some other disease that the person reporting her as being a weggie thought was WG because some of the symptoms were similar, if not the same. I just heard someone I know is in hospital with WG. We'll see. I've heard it many times before.

[pberggren1]

Often times, the auntie actually has some other disease that the person reporting her as being a weggie thought was WG because some of the symptoms were similar, if not the same. I just heard someone I know is in hospital with WG. We'll see. I've heard it many times before.

I have heard it a few times myself.

When I told the guy that runs the local health food store that I had Mycobacterium Abscessus he said, "Ya, I had that once too, just took lots of vitamin C."

Ya right he had that. People just don't take us seriously enough. Maybe it is time to go to the Bat Cave.

[Sangye]

LOL! He had it, too.... :laugh:

[marta]

In that case you just ask them what the name of the disease they had was five minutes later (or on your next visit). You usually remember the name of a crazy disease you have (it took me about a week - I was on morphine in my defence) to remember WG's full name. I had Wegener's no problem, but Wegener's last name kept escaping me :tongue1:. Aks buddy next time you go into the health food store, as I'm sure he won't remember Mycobacterium Abscessus if he wasn't sportin' it.:wink1::glare:

[pberggren1]

In that case you just ask them what the name of the disease they had was five minutes later (or on your next visit). You usually remember the name of a crazy disease you have (it took me about a week - I was on morphine in my defence) to remember WG's full name. I had Wegener's no problem, but Wegener's last name kept escaping me :tongue1:. Aks buddy next time you go into the health food store, as I'm sure he won't remember Mycobacterium Abscessus if he wasn't sportin' it.:wink1::glare:

So true Marta.

Once I get better I will be giving a speach to all of the resident docs and some other ones as well about Wegs and my life with it.

[Geoff]

Ya right he had that. People just don't take us seriously enough. Maybe it is time to go to the Bat Cave.

So true Phil.. I met up with an old friend yesterday for the first time since my DX. He knew that I was 'ill' but could only say how well I looked!!
I dont like to dwell on the negatives but I ended up laying it on thick about WG and the consequences just to 'educate' him.
Dont need sympathy...just abit of understanding.:glare:

[elephant]

I do the same thing, sometimes I tell them to google it. I had one friend tell me I didn't have that disease. "What?!?!" She is no longer my friend. :sad:

[Jack]

I managed to get some recognition of my condition with my work colleagues when I turned up to see them fully wired up and wearing a data logger! That was in the early days when they were still trying to get a handle on my heart and lung function. The drawn face, crutches and wheel chair have a similar Shock and Awe effect, but most of the time I have looked fit and well.

[Sangye]

At Dr Seo's office the nurse who does the general check-in is very sweet and cheerful. Whenever I see her she always says "You're looking so good!" even on days when I'm feeling like total hell. Last time was one of those days, and I talked with her about how Weggies (and others with vasculitis, since she deals with everyone at the Vasculitis Center) typically don't look as sick/ tired/ in pain as they are. I explained that the hardest thing we deal with is people thinking we're fine, based on our appearance, and that while I knew her intentions were good, it might actually be hurtful to tell Weggies "You're looking great." I said that when someone tells me that and I'm not feeling well, it makes me feel like I'm complaining if I tell them how I actually feel. She understood. I suggested she say, "It's so nice to see you. How are you feeling today?" And be okay with whatever answer she gets.

I've learned that the staff in the Wegs docs' offices don't necessarily have any idea about Wegs. They know we get flares, but they don't really know the day-to-day struggles or that it often isn't a matter of steady improvement, like with cancer or other diseases. So lately I've been trying to educate them a little, from the patient's perspective. It helps them understand why patients are impatient or react the way they do sometimes.

[Sangye]

By the way--Dee, how are you? Haven't from you in a few days.

[DEE]

By the way--Dee, how are you? Haven't from you in a few days.

had a few off days and best keeping myself to myself when im like that :unsure:
combination of a few things
son going back to university ,friends going back to work (new school term ) without me:sad:
new meds !!!! cant read at moment , feeling sorry for myself cant shake off
had full bloods etc done and going for results tomorrow
a general i HATE '@@@@@@@@@@ WG moment have them now an then
bet you wished you had not asked Sangye :rolleyes1:
took it out on a pile of ironing :thumbsup: DEEx

[elephant]

Dee, that is ok...it is good your expressing this....we all have been there. Any time you want to iron..I'll send you some blouses that I have not worn. You need a big hug!:hug3:

[DEE]

Elephant you will have to wait till the next bad day , i hate ironing normally i just use it to get rid of my frustrations

thank you :thumbsup: DEEx

[elephant]

Too funny Dee. Least you guys will look very pressed!:flapper:

[Sangye]

Aww, Dee I'm sorry you're having a bad spell. The good thing is that they come and go with Wegs. You can count on that.

[Doug]

I told my doctor, "You shouldn't be able to get a disease you can't pronounce or write," and he reminded me it doesn't work that way! So I learned how to spell the dang thing by learning how to sound it out. Nothing comes easy for a weggie, eh?!