Hi Everyone

[Jen57]

I joined this site a few days ago but am not very good on computers and didnt know how to introduce my self. My name is Jenny and Im from Perth Western Australia. I am 52 years old and was diagnosed with WG 13 years ago. Since joining Ive been reading your posts and am amazed at how all of you are so brave and still seem to be so happy. I feel so devestated and depressed at the moment. Up until the past few weeks ago I seemed to be handling things really well. I havnt had a flare up for 13 years but am permanently on steriods and they are causing me most of my problems at the moment. I think Ive been in denial for all these years and now finally have to face up to the fact that I actually do have WG. My Doctors have not been helpful over the years. When I see my specialist with symptoms he has never said to me that they were caused through the WG. BUt after reading some of the things you all have written everything is starting to add up. Everytime I try to reduce my steriods, even slightly, the symptoms come back. I am so glad Ive found this site.

I am really looking forward to hearing from you all

[Jack]

Hi Jen.

Cheer up! ;)

You can have a good life with Wegs even with all the drug side effects, it's just that you may have to adjust your expectations a little to fit in with your New Normal. I'm not denying that things can be crap at times (I found myself in tears and having to be hugged only yesterday when it all got to be too much), but then I think of friends who have died at a younge age and decide that I'm doing better than they did in spite of the problems.

I can understand your frustration at the steroid dilema. I've been taking the stuff for 25 years and have suffered just about every side effect going. The damn stuff is wrecking my body! But the alternative is worse. :( My advice is to try to not fall down stairs! That was my biggest mistake. ;)

Anytime you feel like venting your feelings, post them on here and you will get a symathetic response. We're all in the same boat and will know exactly how you feel.

[JanW]

Hi, Jen, and welcome. We are all hear for you. Are you on other drugs as well, or just the steroids?

[elephant]

Hi, Jen ...I feel your pain...I myself have been on/off prednisone for over 30 years. I will probably be on them for the rest of my life. How much prednisone are you taking? What are your symptoms..or flare's that happen when you try to wean/go off prednisone?

[Sangye]

Hi Jen, I'm glad you're here. Please let us know how we can help you. We all understand the tremendous grief, frustration and difficulties of living with this stupid disease. We all have days when we feel better able to cope-- dare I say even "hopeful"--and days when we're truly down about it. Please don't think you are alone in feeling that way about Wegs.

Even if everyone posting on a particular day seems to be in a good mood, if you need a hug or support or want to vent, please ask for it. This group is amazing. :)

[LisaMarie]

jen listen to these peoples:..i am newly diagnosis and at times mad as h***..this iz not how i planned my life....but through this forum i have learnwd alot...cried alot and vented alot....and jack is right ....i am trying to see the half full glass....not half empty..we ll understand....just let us help

[Jen57]

Hi guys, thank you so much for replying to my post. I appreciate your much needed support. It is great to be able to talk to others who understand. I am feeling much more positive now. Yesterday was a bad day but today is much better. Ive decided to take one day at a time from now on. I am not going to listen to the specialists negatiive remarks. I have stenosis in my right leg and am having difficulty walking at the moment. I told specialists I would get a exercise bike and ride as much as I could until I started to hurt and they said "dont bother you wont be able to do it" and they also said at the same appoint that I will never get off steroids and a few other negative remarks. Well I got the bike and I rode 800 meters the first night, 500 the next (only had it 2 days) I'll show em. I think I need to change my specialists, which I will do. I am on other drugs as well but not for the WG. I have fairly bad diabetes, which is hard to control because of the steroids and am on a handful of other drugs to beat the side effects of the steroids. After reading some of the posts on this site I am very lucky. I was shocked to see what some of you went through and still remain so positive. If you all can go through what you do and remain the way you are then so can I.

[Jack]

Good for you Jen, but also try to be kind to yourself and don't punish your body too much. Wegs takes a heavy toll on your stamina and if you overdo things you will pay for it later.

Getting off steroids is a great target and achievable for many, but many more are on them for life, myself included. If you start cutting down and experience bad symptoms, increase the dose immediately. It is a dangerous game and you can do yourself a lot of harm.

[Hammy8241]

Good for you Jen, but also try to be kind to yourself and don't punish your body too much. Wegs takes a heavy toll on your stamina and if you overdo things you will pay for it later.
.

I've been having a good week.

Family BBQ yesterday (21 people). Did the cooking as I always have. (Was chef for many years) Half way through, my anxiety levels shoot through the roof, head went very fuzzy, sinus went into overdrive, started crying waterfalls, breathing was laboured.....to put it mildly I was in a bit of a state. Luckily, the others were well into socialising so most did not see the crumbling me. Naturally I finished the cooking etc but be warned WG does bite!

24 hours on, I'm still fuzzy and feeling weak & weepy....roll on tomorrow.... another lesson learnt.:o

[Sangye]

Aww Hammy... "weak and weepy" is classic Pred. It usually means you're overdoing it physically and/ or emotionally. Remember, your adrenals cannot make the adrenaline they need to cope with basic stress, so a major BBQ like that probably just demanded too much from them. Lay low for several days to recoup.

Jen, I'm glad you're taking matters into your own hands and focusing on getting better docs. I agree with Jack, though-- please do not push your body to prove anything to them. Pred makes you feel like you can lift a car and overactivity will always deplete you more. You can wind up on higher doses of pred for longer by doing that and also increase the Wegs fire dramatically. Be gentle with yourself. Exercise at low levels-- go for time and distance, not intensity. Healing requires a lot of energy, so don't deplete all your resources by overexercising. A good exercise session means having LOTS of energy left over at the end.

Because it's a steroid, pred also brings out the fight in us. That can be good in moderation when we use it to advocate for ourselves, but it can also become an obstacle in communicating and healing. I am naturally a strong, independent person, but on high-dose pred I was intolerant, defiant and unyielding. I was so determined to prove my docs wrong that I harmed myself. There were many times when my fighting spirit kept me alive and many times when it drove me straight into worse crises.

[Hammy8241]

Thanks Sangye, Couch potato mode fully working today.:D Hope you are taking thing easy after your recent scare too.

[Jen57]

I didnt know all this info about pred. I have tried to inform myself but obviously not enough. I have tried before to find people to talk to about it but never came across anyone before now. The specialists have always made me feel like it wasnt necessary for me to be on it. When I tell them I get syptoms when reducing, one of them said "no one gets sick when reducing. how can you be getting sick its not possible" Do you know Ive learnt more about pred and WG from you all in the past few days than I have learnt from the Doctors in years.

I will be kind to myself and not overdo things anymore now I get whats going on.

Jack, thats awful that you had a hard time at your BBQ. I hope your feeling better today. Its awful what illness does to you. Was wondering what dose of pred your on and what side affects you get from it. Do you guys manage to work as well? I had a business of my own (dog grooming) and could work 7 days a week before I got sick. Now I can only work a bit. which is better than nothing cause I love my job, would hate to have to give it up.

[Jack]

Bit of Pred mind muddle going on there. It was Hammy with the BBQ problems. ;)

I probably should not go into all the Pred side effects I've had over the past 25 years, it's not a happy story. I can't get below 10 mg and the down side is that they have now wrecked my body to the extent that I find it hard to get around. The up side is that they enabled me to hold down a full time job and raise a family. :)

[Hammy8241]

Jack, thats awful that you had a hard time at your BBQ. I hope your feeling better today. Its awful what illness does to you. Was wondering what dose of pred your on and what side affects you get from it. Do you guys manage to work as well? I had a business of my own (dog grooming) and could work 7 days a week before I got sick. Now I can only work a bit. which is better than nothing cause I love my job, would hate to have to give it up.

Hi Jen, thanks for asking and i am a lot better today. I'm on 30mg Pred currently. Had to increase after a failed taper last month. The, side effects for me are emotional ones with weight gain. The weight gain is also because i was running 20+ miles a week before and always on the go and now do no running and a lot less activities generally. I tend to rest the day before I go to work and manage to get by OK. Being able to support the family through bringing in a wage is important to me, although If I felt as bad as others here, I'm sure I would think again. We are all affected in different ways and degrees, but If you want to, and feel you can, then working takes your mind of WG and by concentrating on the job I find I only get tired after i finish......couch potato again for the evening! I guess you have tried just working mornings and resting in the afternoons or something similar, rather than work from monday to 'knackered' when you are forced to rest?

[Carly Hedge]

Hi Jen..

I have to take a daily dose of Pred. I was down to 5 mg a day but because I am in the middle of my 2nd round of rixtuxan, my Dr. bumped me back up to 20 mg a day till we are done with treatment this time. So I understand the emotional rollercoaster. My husband states that She-hulk has returned. LOL. When I was on even higher doses- it was DON'T POKE THE BEAR!! between my husband and my bro when I had recently gotten out of the hospital. But I still have my moments of sadness but I just tell myself it could be worse. Be grateful you are here and hopefully have people around you that love you. If not, U got us here!! :)