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.

[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?
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.