On a bit of a downer today

[crackers]

John woke me at 3am this morning i had heard him shouting out thought he had cramp.He came into my room,yes seperate rooms, he was sobbing his heart out he said he cant live like this anymore.He has been reducing the steroids and he is getting all the symptons back pain in his joints and muscles weakness short of breath and that horrible cough.He has decided he wants a divorce so that i can have a life.I have told him no way.I phoned the rheumatology helpline this morning and told them he was going into hospital today for the muscle biopsy they arranged.When we got to the ward they had phoned and arranged for him to have blood tests and a chest x-ray.John said if he manages to walk to the shop when i am in work he struggles asking for what he wants because he cant breathe and talk at the same time.It is so unlike him to give in he has always been a grafter and he is finding it so frustrating.I dont even know what to say to him.I am exhausted trying to work full time and see to John as well dont know what way to turn.Sorry for whinging but had to tell someone
Sue xx

[Sangye]

Oh, Sue, this is heartbreaking to read. I had the same thing happen as I reduced the steroids. Please, if he will read it, share the following with John :

Hi John, Since I'm not you, I don't know exactly how you feel. But having gone through the hell that is Wegener's, maybe I know enough to help you get through it a bit.

When I got sick with Wegs I had my own practice as a chiropractor, hiked many miles a day, and was fit and strong. I was mentally very sharp. I was very good at helping others but lousy at letting others help me (physically, emotionally, or financially). I thought it made me weak to accept help. Then I wound up totally flattened by Wegs. First with crippling pain for months, then lungs hemorrhaging, simultaneous blood clots, lots more-- endless complications that weakened me beyond what the awful drugs did. In those first days, I had lousy doctors who either didn't understand or didn't believe me, so I was constantly trying to get someone to listen or explain things to me.

I had a phenomenal support network of friends who did everything they could for me. But I'm single and so was alone for most of the time, having to make do. I had no computer access, had to do all my own financial stuff and arrange all my medical stuff, including insurance, etc... My family left me shortly after I got diagnosed, when I was nearly dead, in fact. (This was a lifelong pattern of theirs) I had no income.

On the excellent advice of a friend, I started therapy to help as I went through this nightmare. I might not be alive without that. It showed me that my frustration and anger was really terror. And that terror can take you out, or make you do things you'd later regret. And my anger was pride, too. I didn't want to be the sick one. I wanted to be the strong one. I resented needing help. My whole identity was wrapped up in being strong physically, mentally and emotionally. So when I got flattened, I literally didn't know who I was anymore.

At some point, each of us must find something worth living for. Maybe you can't find a larger purpose right now. Just find some reason to live FOR TODAY. Do that everyday, one day at a time, to get you through this. (Or one hour at a time, on the worst days) It takes you outside of the hell you're trapped in.

Feel the deep grief of losing the life you had but don't drown in that grief. It's a tricky balance. Everyday you must find a new way to do it. You may get your life back, or you may only get parts of it back. It's too soon to tell.

On National Public Radio in the US, a journalist named Leroy Sievers kept a blog on NPR.org called "My Cancer," as he went through it. (The blog is still there-- worth reading it from Day 1). A Leroy quote has helped me on my worst days : "It's scary, it's sad. But it's still life, and it's a life worth living."

Your life is worth living, John. You are more than your muscles, your strength, your lungs, or the work you did.
Best wishes,
Sangye

[crackers]

Sangye,
Thank You so much. I will get John to read this when he gets discharged from hospital.I do understand his frustration as he was always the strong one who everyone turned to.We have a few friends who have slipped away but I am sure its because they just dont understand and we have the group of friends who have stuck by us through thick and thin.We will get through this but as you know its at times two steps forwards and three steps back.I know you dont want sympathy but I did swallow back a few tears, how you coped alone God only knows.Look after Yourself and take care,wishing you lots of Good Days
Sue xx
ps the hospital rang earlier to say they are doing loads of blood tests a ct and a echocardiogram and chest x-ray.Ithink the thought of today was just too much for him as its his fourth surgery in 12mths and once this is out of the way he will cheer up a bit

[andrew]

Nice one, Sangye. Really well said.

On a practical note, is there a burning necessity for John at this stage to reduce the Pred? I read that his Rheumy wants to reduce it but hey, better to have a dosage and be able to function than a now/no dosage and feel like a train wreck. I'd assume that the doc would re-examine the whole Pred thing now he's in hospital?

[crackers]

Thing is Andrew he was on a surgical ward,The rheumatology nurse told me today to tell him to up his steds to ten and the consultant will review on Monday.If he is still rough over the weekend he has to go to A+E Dept.The wrd he was on done the bloods and chest x-ray.The ct and echocardiogram as an outpatient
Just picked him up now and brought him home he seems to be in a brighter mood, think when you are down and its 3am things tend to get you down even more
Sue x

[andrew]

think when you are down and its 3am things tend to get you down even more
Sue x

Totally. Night time magnifies everything. Really hard when you're sick. I hope he's feeling a bit better soon on 10mg.

[crackers]

Thanks Andrew I am off to work in a min have a nice day
Sue x

[Jack]

10mg of pred does not sound like very much at all if he is having problems. 10mg is my normal maintenance dose, increased to 50mg during flare ups. My first few days were at 500mg IV.

[crackers]

Last time he had a flare up he had a three week course of injections as well as his normal dose but dont know what strength they where.He has to phone the helpline again on monday to let them know how he is doing fingers crossed he will be ok
Sue x

[Natalie Makeef]

Hi Sue from New Zealand

I understand where your husband is coming from. I feel his pain. I was diagnosed in Nov 06. I am currently on Methotrexate and will be for several more years. WG has been a life altering struggle for my husband and I. I am 36 and I have been married for almost 4 years this April. I am unable to have children due to the medication/WG that as completely destroyed my ovaries. I haven't had my monthly mestrual cycle since 2006 and I have gone through early menopause. I do get cramps and back pains and pains in my joints in various parts of my body and I do get shortness of breath and more recently I have been having a cough. I have been taking a ventalin which has helped the cough a bit and my doctor as put me back onto predisone. Is your husband on predisone? This could help with his joint pains? Although it does have side affects but it will help him with WG. Please tell him not to divorce you. John will need to have lots of rest. I had a very stressful job and I had to finish work because the stress made WG worst. I don't do too much in my day. I would often do lots of things and I would be exhausted the next day. I will be praying for both of you!! All the best Natalie