in my head.

[delorisdoe]

Wegners granulomatsis. I can't even bring myself to say it. I mean really...could it have a stranger name? It makes my face turn red with embarrassment. I am also not a fan of explaining what it is to anyone. I know what it is but I don't. I was diagnosed ten years ago. It was a relife that finally the doctors knew what I had known for more than a year and patiently let them figure it out. After a nasty case of pneumonia the specialst who finally diagnosed e. took a blood test and decided it was insignificant-and it was. He left the room and I snuck a look at the name f the blood test. I finally got tired of waiting for the different specialists to figure it out so when I went to a rheumatologist I liked I just blurted it out. The canca was at this point a lot higher. I started coughing blood I think the next day. Ya, thanks lungs, you coulnt have done this months ago and helped them figure it out sooner.

I think ts ironic that the symptoms that make life with wg so difficult are so hard to deal with. The pain and tiredness become all consuming. Okay ,ya, but am I coughing or peeing or sneezing blood? Nope. Not this month. So I am now now playing a "wait and see" game. My doctors say they want to wait and see if it just smolders away. In the past it has sometimes. Wait and see does include a lot of blood tests and 24 hr urine colections. I hate that really big bottle of pee. I a suposed to call them if I get worse. How am I suposed to know? At christmas I had pneumnia...I thought it was a cold. I waited two weeks to get treated for it because I had a scheduld appointment I the new year. Two days ago I got a cold and was ready to turn myself in.

I hate the drugs. Who doesn't though. Maye it has something to do with being on 100mg a day of prednisone for months that makes me hate it so much. My yougest brother worked at fortinos and I used to purposely avoid his line because I did not want him to be embrassed by me-i was ugly. And going bald. At a famlily picknik my uncle asked my mom if I was sick-his daughter has juvenile arthritis for 30 years and he is familiar with the side effects of prednsone. She knowing my intense need for privacy told him no. Thanks mom...now he just thinks I ate 99 too many big macs. I have friend 28 years old with pancreatic cancer. She is the only person I know who understands how the remedy is in many ways as difficult as the disease.

Wow...I. have really rambled on. I don't share with anyone. Ever. Even if I'm in a flare I don't tell my husband friends or parents.

Have anyone else noticed that wegners is mentioned on house more consistently than any other disease.

[Jack]

Hi Deloris, welcome to the group.

It sounds like you are having a hard time of it at the moment and a lot of the problem sounds rather a lot like improper treatment. It does not sound as if you are being monitored closely enough and sustained 100mg of Pred is just plain crazy! Your first move should be to seek out a Wegener's specialist with plenty of experience. A wait and see approach and leaving it up to you to take the appropriate action is not acceptable and could easily result in a lot of permanent damage taking place before you get as far as treatment.

[delorisdoe]

hmm...i wrote this at 2am on my ereader so that is why the typos and incomplete thoughts are there. The 100mg was ten years ago. The wait and see is now. I have had a few small flares in the last few years, nothing that a short amount of prednisone did not clear up. This time they have decided to wait to see if the dissease will settle and as i said my blood and urine are closely monitored. I think the doctors i see are as close to a wegners specialist you can get in this area. You are right 100mg was crazy. I did not sleep for days on end and was scary to be around.

p.s. i meant to say that it is ironic that the symptoms that bother me the most in my life are the ones that the doctors care the least about ie the pain and exhaustion.

[Chris G]

Ramble on if you like Deloris! This group is full of people who will listen and understand exactly what you're saying. I'm so glad to have found the group.

I completely agree with you about the exhaustion being one of the most difficult things to deal with. I want so much to just get up in the morning, shower, go to the mall, take my kids somewhere.......just get through what most people would consider, a normal day, without being exhausted by noon.

p.s. "Thanks mom...now he just thinks I ate 99 too many big macs".........you made me laugh out loud.........thanks, I needed that

[gurinbasra]

Hi Deloris,

You are not alone, as I read your pain and frustration, I can totally understand what you mean and how you have been feeling. It kills me inside too that in order to live you must first die at the hands of the meds, you have to set aside your life as it used to be and take on the new you which is really hard because everything has become hard. After only three years of this, I've just really tried to lighten up and the days when I can't make it out of bed, I still say "bring it on"! I'm glad that you've vented here, there are some great people with great advice and support.

Smile today knowing that someone is thinking of you!
Gurinder

[LisaMarie]

Hi Deloris
It's all good..we rant rave vent and celebrate small victories here...60 mg of pred maked me nuts so i can not imagine being on 100mg...thought i did accidently take 110 mg once in a 24 hour peroid and was up for 3 days and felt like a new woman til i crashed and burned and slept for 12 hours.....This disease sucks..I am a nurse and hate meds...so for me to take treatment is a big deal...i am wired weird and very sensitive to meds anyways so i have had one heck of a scarey roller coaster ride...I know how you feel...sometimes I just want to scream"LISTEN TO ME"..'IT S MY BODY AND IT'S NOT RIGHT RIGHT NOW"....But don t do it cause the docs think it s just a mood swing from the pred..i try to write my questions down them write the docs answers and keep it in a file box..it helps keep me on track..I hope you are on Bactrim ds prophalytic since you have pnuemonia ...i spend 14 days in the hospital and almost dies and part of the reason per ID was i need to stay on Bactrim DS and should have started with my diagnosis.....hope today is better ...welcome to the group...the oldies are wise in knowledge and are willing to share....have a great weekend

[delorisdoe]

I am on bacrtim ds. I am over the pnuemonia and I think i just have a nasty chest cold right now. On a side note...I have missed two days of work in ten years and i work 10 hours a day most of which is on my feet. I tend to lose alot of employees when I am on prednisone-especialy 100mg. My doctors do listen to me i tend to underplay situations. Actualy they have said it is like pulling teeth.

Leigh

[freakyschizogirl]

Have anyone else noticed that wegners is mentioned on house more consistently than any other disease.

This made me laugh! I noticed Vasculitis was mentioned on NCIS when i was watching it one day, i hooted out loud and got odd looks from both my mum and sister!

Good luck with any future treatment Deloris. :thumbsup:

[Daggar]

[QUOTE=... I don't share with anyone. Ever. Even if I'm in a flare I don't tell my husband friends or parents.[/QUOTE]

Deloris, I'm not much help with knowing what the disease and treatment feels like -- my daughter is the unlucky one -- but your statement about keeping everything to yourself is very scary from a caregiver's perspective! You need to be able to communicate with those around you and let them know what is happening with you..... it makes a huge difference!

[Jack]

With your late night writing and my early morning reply we did not get off to a very good start did we? :rolleyes1:
There is always plenty of room for misunderstandings with the good ol' internet.
Glad to hear that you are receiving better treatment than I imagined. :smile1:

[delorisdoe]

@daggar. that just me. I hate talking about it with anyone. I hate people asking me how i am feeling. After I had my daughter i swore id never let anyone be in the room with me but doctors if i ever did have another child because i could not stand the look on my mother or husbands faces. they were thinking "my poor baby" and i wanted to smack them-might have something to do with the labour pains though. I get tired of explaining things and even more tired of questions from others. Last night I was wondering how I would ever be able to hide the state of my health from family if i were hospitalized. this is just how i am wired.

@Jack-it was all me. as soon as i read what i posted i thought oh gosh this makes very little sense.

Leigh

[delorisdoe]

This made me laugh! I noticed Vasculitis was mentioned on NCIS when i was watching it one day, i hooted out loud and got odd looks from both my mum and sister!

Good luck with any future treatment Deloris. :thumbsup:

they test almost every paitient for wegners. if they dont say wegners at least one of them says "lets get a run a c anca on him.

also, on young in the restles jills mom died of wegners but i did not like that story too much because they kept saying "its the wagners"

[Daggar]

Ouch.... sounds like you've traded in the "labour pains" for the "prednisone" :predrage: ....

So if I'm reading you right -- you want people to treat you the same way they did "before" WG and stop the sympathy crap!??

The way you felt with labour pains reminds me of my wife -- I was there to "comfort" her but ended up standing back to avoid being hit -- the head spinning 360° seemed to be a possibility at times!:ohmy:

The only think I could suggest is let them know how you feel and hopefully they start coming around.

[delorisdoe]

ummm. well i am not on prednisone now nor was i when she was born-she came pre diagnosis. They arent doing anything wrong i just dont like pity and sympathy. it makes me very uncomfortable. People dont treat me differently as i dont talk about it and as far as they know there is nothing to speak about. I dont feel the need to have them come around. I really do think there is something wrong with me that way lol. My brother was diagnosed with Deviks disease last year. when relatives ask him about it he goes into great lengths to describe everything. i listen thinking to myself how can he stand all of that attention?

[delorisdoe]

Maybe I should add I am 38 years old and was diagnosed 10 years ago. Everyone knew back then because you could not be near me without noticing. I just dont feel the need to let them know or worry about every flare up i have over the years.

[Daggar]

so no meds other than bactrim?

[delorisdoe]

Right now yes...only bactrim. My blood and urine are tested often for changes and i will be medicated if needed.

[Daggar]

Sorry about the pred ref. - sometimes my humour gets me in trouble ....

So you've been in what they call "remission" for the past 10 years other than a few flare ups which were treated with a temporary dose of pred... which drug cocktail did they use initially?

[delorisdoe]

the pred humor was funny. I just think i may have had a very hard to understand first post that confused a few. it was the middle of the night. I was sick for 2-3 years after the diagnosis 10 years ago. for the last 7 years they have treated all of my flare ups with prednisone only. I was on cytoxan for the entire first 2-3 years and clearly i can not ever take that again. that is why we start with prednisone i guess. towards the end of my initial treatment my white blood cell count was dangerously low. My primary wg doctor sent me for ivig treatments 3 times a week for a month. after that i seemed to start to get better really quickly.

[Daggar]

you've been lucky enough not to have had to take the cytoxan again.... that's a nasty, but necessary, drug.

i guess the waiting from lab work to lab work is another thing that drives Weggies crazy... how often are you experiencing these "flare-ups"?

[delorisdoe]

From what I understand I cant go back on cytoxan ever again. side effects wise i prefered it to the prednisone. I dont mind waiting from lab to lab because if their is a problem they call. It does kind of ruing my weekend though when I get a voice message on thursday at 6pm telling me to call them by 5pm. I have to wait until tuesday at the earliest to find out why. I have felt it comming back out of remission since last summer. It is getting worse month by month but so far no blood and no organs are showing signs so it is a wait and see game for now. I am okay with that. over the last 4 years or so i have had small flare ups aprox once a year. This one just feels different and more like the original one.

[Daggar]

Hopefully the pred works if it is a flare-up but if not there are a number of people on here that are taking Rituximab and from the studies that have been done it is "at least as good" as cytoxan for getting WG into remission intially while "even better" at regaining remission during a relapse.

In the meantime... keep venting... it's therapeutic!

[NicShaf]

delorisdoe,
Good for you for getting on here and venting, we all need that sometimes. You shouldn't keep everything inside. I understand not wanting to always vent to your family or friends, but everyone here is in a similar situation, so we all understand what you're going through, vent all you want.
I see you mentioned being on Preds, but have you been on any other immunosuppressant’s recently or in the past 10 years since your diagnosis?

Now I want to watch House to see how often they mention Wegs! Too funny.

[delorisdoe]

It has been 7 years since I have been on any immunosupressant drugs

[drz]

@daggar. that just me. I hate talking about it with anyone. I hate people asking me how i am feeling. After I had my daughter i swore id never let anyone be in the room with me but doctors if i ever did have another child because i could not stand the look on my mother or husbands faces. they were thinking "my poor baby" and i wanted to smack them-might have something to do with the labour pains though. I get tired of explaining things and even more tired of questions from others. Last night I was wondering how I would ever be able to hide the state of my health from family if i were hospitalized. this is just how i am wired.

@Jack-it was all me. as soon as i read what i posted i thought oh gosh this makes very little sense.

Leigh

People cope with illness in different ways. Some people like to share their concerns with sympathetic listeners and find these discussions helpful. Some people prefer to avoid any discussion of their illness and use denial and focus on other things than the illness in order to cope and avoid feeling overwhelmed or anxious. If you spend any time around old people whose primary recreation is going to doctors you can hear another way which is bragging about their horrible illness and difficult treatments. It is like old fishermen trying to top each others stories and they relish having the biggest, baddest medical problem. It is like "that's nothing, I can top that". Some people detach themselves from their illness and view it like a a puzzle or problem to be solved and managed without having any feeling about it (intellectual approach). Some regress to "Mommy, take care of me and make me feel better." Or "doctor fix me, I'm broken". Or the anger outburst "this isn't fair and I am going to make the world around me as miserable as I feel" as they lash out to every one. Ranting and venting in a control manner is another way to release the anger.

I don't think there is a right way or wrong way to cope with illnesses. Just different approaches and we might use all of them at different times. I think most of us find a style or two that we prefer and use those more than the rest, but learning to cope and manage our illnesses and feelings are crucial to how we present ourselves to others. Our family may certainly have preferences in how we present ourselves, but it is our illness, our feelings and our choice in the end.

[Daggar]

It is like old fishermen trying to top each others stories and they relish having the biggest, baddest medical problem. It is like "that's nothing, I can top that".

too funny.... reminds me of watching "grumpy old men"... a classic!

I guess I'd be one of those who analyse the hell out of it.... and drive doctors, family and friends over the edge.:rolleyes1:

[delorisdoe]

I like that. Am not sure where I fit in that analyisis but I do know it is not in the doctor make me better. I'm not in denial either. It all just is an anoyance and an ufortunate turn in my life

[NicShaf]

Well, on the plus side, you can vent to us here and you never have to see that "poor baby" look on our faces:)

[Sangye]

Hi Leigh, welcome to the group! Glad you're getting good treatment at this point. I was pretty horrified to see you were on 100mg pred for months. :sad:

I agree with the others that it's good for you to come here and share how you're feeling. You mentioned that you don't like getting pity or sympathy from others. I wonder if you feel that all sympathy is pity? I sure did, for a long time. At any rate, drz is correct in saying that there's no right way to deal with this. Everyone has their own style. :smile1:

[jola57]

Hi Leigh, welcome from me as well. Venting is how we all met here, so vent and rant away. Pity, there is no getting away from it, at least here everyone knows exactly what you are going thru.
Sangye, I had my oximetry test and I do have apnea. It is just raw data and has not been read by a specialist, but it looks like CPAP fom me:ohmy:. How is the wedge working out?

[Sangye]

I'm glad they found it, Jolanta. I've gotten used to the wedge. It took a couple months to figure out how to lay on it without falling off or feeling constricted, much less flip from side to side. I've definitely noticed decreased leg/ankle swelling but they still swell up with standing and walking. I've still found ways to snore! It's better than it was, though. I think it's reduced it by about 50%. Basically I think I'll be on the wedge until I can get this weight off someday. That'll clear up the snoring and hopefully the elevated intracranial pressure too.