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Carol
12-11-2008, 09:36 PM
This is a speech I did at Toastmasters. My objective was to do a Keynote speech – so I pretended I was the guest speaker at a Wegener’s conference. It may be an interesting read for you - sorry it's so long but I was required to speak for 20 minutes!!!


A Wobbly Wegener’s Walk

Good evening fellow Weggies.
I’ve been asked by the committee to give the keynote address for this conference for a couple of reasons. Firstly I have only been recently diagnosed, so my stories are still very fresh in my mind and secondly because they know I am a Toastmaster and thought it would be good training for me as they may use me for other speeches about our disease in the future.
There is evidently around 20 % of the attendees tonight who are not Wegener granulomatosis sufferers but are here because they are partners, parents, carers or in the medical profession or have some other involvement with this disease. Thankyou for being interested and coming along.
This is the first speech for this conference and as you know there are a number of medical experts who will be speaking to you as well as your elected workshops.

I am not a medical person myself and am certainly no expert so I am basically here to give you my story and some personal insights into this insidious disease. What I have found over the past few months is that there is lots of medical information but I craved to know just what was going on in other people’s lives and minds and how they were coping and living with day to day life. I also needed to know what medications other people were on to reassure myself that what the rheumatologist was giving me was “normal”. The personal approach of what others were going through was what I needed. So I guess that is my main focus in this speech as after all we are not just a medical record. We are all individuals with our own feelings and reactions to this disease. During this conference I would like you to not only gain information on Wegener’s but to gain a greater insight into the personal effects this has had on yourself, and other sufferers.

When I was asked to do a key note address I thought now what does a keynote address involve and was asked to speak for up to 20 mins. Well as a toastmaster I have never spoken for that long so was interested in that the advice given stated that I could basically do this speech with 10 X 2 minute mini speeches. Well that seemed instantly achievable. So I wrote down about 10 topics and from this list I developed this speech. There are many points of course it suggests in giving a key note speech but basically it is encapsulated in the quote that . “In the role of the keynote speaker you must communicate to the members of your audience that you are united with them by bonds of sympathy, common experience and understanding.”

Do you know what you have? Those were the visiting rheumatologist’s words to me 6 months ago. No no-one had told me up to that point. It’s Wegener’s Granulomatosis. Well of course I’d never heard of it. Although it’s evidently often mentioned on the TV program House as a possible mystery disease. What a mouthful – will I ever learn to say it and spell it. Evidently it was named after a German doctor who named it in 1940’s but in the USA they are avoiding calling it Wegener’s and call it Vasculitis as that doctor is now being implicated in suspect medical experiments in WW2 – I’m sure most of us feel we are human guinea pigs with this disease anyway.


The moment I found out what it was, it was home to the computer and so began my learning about this disease. It was very scary reading testimonials of other Australians and overseas people. Knowledge is always important to me and usually puts things into perspective At first I found all the information important and interesting, then I found it plain scary, then I realised I was becoming obsessed with some of the horror stories and had to stop myself from going on line and “doing research” Of course there are many sites for countries all around the world but what I have learnt most of all is that everyone is so different with their symptoms. I found it less confusing sticking to the Aussie ones as medications have different name in different countries. The 2 sites I have used are www.wegeners-granulomatosis.com (http://www.wegeners-granulomatosis.com/) and Wegener (http://www.wegenersaustralia.com).
I have particularly enjoyed using the www.wegeners-granulomatosis.com (http://www.wegeners-granulomatosis.com/) site as it’s managed by a Canberra guy who has the disease. There are about 130 registered members and what I like about it is that you feel welcome to put anything about yourself on it, ask questions, and read other peoples ramblings about their situation. There are a number of overseas people who also log onto the site and they like it too. I encourage you to log onto this site – I have printed cards with these two sites on it and they are on the tables as you leave this room. The wegernersaustralia site is Australia wide and has a conference every 2 years. They had their AGM not long after I was diagnosed and I went down to it. They like every organisation have trouble getting a committee but I did enjoy my meal and arvo with them hearing their stories and sharing mine. The best thing about it was that they were ALIVE. At that point I needed that reassurance and that people get on with living with a chronic disease.


My story – I’ll try to keep it brief – I’m not usually a drama queen but this could provide good material. I visited my parents in Albury at Easter and had a strange ache in my neck with a mild headache. I had been suffering from very bad sinuses which the doc then put me on antibiotics and it was decided that I should have a sinus clean up operation - After 2 weeks they were no better and he gave me more antibiotics. I then developed painful joints would be painful for about 24 hours and then travel to a different joint. During this time I felt just so ill and the days would basically just drift by with me lying on the couch with massive doses of painkillers every 4 hours. The doctors at this stage thought maybe Ross River disease. I was tested for that and the results were negative. They weren’t quite sure what else to test me for. Then I developed lesions – big purple watery ones on my knuckles, circular ones like ring worms on my arms and knees and blistery ones all over my face. That really started to alarm them although to me they weren’t painful. I remember one day sitting in the doctor rooms in my underwear with various doc all coming and going looking and suggesting different tests. You know I’m grateful for having those lesions)and luckily wearing nice black underwear that day as they weren’t painful but were very showy. The strange thing is that my sister who had also spent Easter with me had similar but more alarming lesions when she returned to Port Macquarie. They never did work out what she had although she demanded the ANCA test after my results. Once the Anca results came back and my doc sent me off tho the rheumatologist.

I was immediately hospitalised and given IV prednisolone. What a wonder drug that was – I couldn’t believe how quickly the pain subsided. Returning home was scary – the house to look after, meals to cook, visitors, phone calls etc. I began a very slow recovery. My coordination became very poor and my legs didn’t want to work – I was reduced to a shuffle. After a couple of weeks we had planned to go away in our van up to Angusvale about 40 kms north of Bairnsdale. Alby was involved I the organisation of promoting responsible camping. I thought I would be able to manage to be with him even if I spent most of the time in the van. As I was washing the dishes that morning within 10 mins my whole right hand went numb. That was frightening. I immediately rang my doc who said he would ring back after he had contacted the rheumatologist. By this stage we were packed with the van on behind and halfway to Bairnsdale when the call came through. You will have cytophosamine in hospital. Is it OK on Tuesday No Carol NOW. So we pulled up outside the Bairnsdale hospital – I went into the van and got out all the necessaries and checked in. Alby was on a schedule with his program so he made sure I had a friend who could pick me up from hospital on the Monday he kissed me goodbye and off he went camping. That was when the scary part began for me. The nurse came in and said and who is your oncologist??????? Alarm bells rang – what are they giving me. Fortunately a nurse who works in that unit stayed with me during the chemo infusion. I’ve had an ey incident when I began to lose vision in my left eye and it was off to the Melbourne Eye and Ear Hospital in a hurry. My main symptoms now are numb feet, sinus blockages, and an unexplained shakiness and lack of coordination which comes and goes according to the time of day and what I’ve been doing. I am now on just Prednisolone, Imuran which is an anti immune suppressant, a 3 times a week antibiotic and 6 weekly cycles of the chemo. I’m not sure of the results for a CT scan I had last week for the lesions on my lungs.

What’s a typical day for me? I seem to rise easily, but once up I have to do things slowly. Not like my normal brisk self. If I try to hurry my whole body shakes and feels weak. Then about 9.30 I really go downhill – the couch just screams at me to lie down. When I first got this disease I looked into trying to find some alternative things to boost my system. Fortunately I had one already at my fingertips. The Twin Heart Meditation. The first part of this is all about opening up the heart and crown chakra and then uses the prayer of Francis of Assisi to bless people ands situations of the earth. The second part of this meditation uses the white light which comes down through the crown to heal all parts so of the body, it even brings the light into the blood!.. I must admit I do often fall asleep during this meditation but that’s OK. Afterwards I feel much calmer and steady. I really don’t know how I would have got through the last few months without that meditation it is just so calming and healing. I did make a trip to my local health food store where the owner also has an auto-immune disease. I suggested a few of my ideas to her for supplements. She had been right through all this process too taking complex things recommended to her by alternative practitioners. While I do believe in a lot of these things I strongly felt that I could not jeopardise my health with something not being medical with the strong medications I was taking. So the only thing I took on board was to drink Herb geranium tea once a day. Because I rest during the day I nearly always get up during the night for about an hour and half during which I actually achieve something – I might empty the dishwasher, fold some washing etc. this makes me feel very positive about the time up and I have actually made my following day easier because it is out of the way.

I try to be careful with my diet and eat all the recommended things which I have done all my life anyway. The paradoxical thing about me getting this illness is that it came at Easter when we had eaten a wonderful bounty of organic produce from our veggie patch and fruit trees. Sometimes you just think why I put so much effort into some things such as growing my own veggies when this is what life deals me. Still as many people have said told and I realise by reading many other cases on internet that I have come through relatively unscathed so perhaps all the organic produce has helped. My kidneys certainly seem very happy with what I am doing. My biggest weakness at the beginning – maybe it’s always been an obsession – was CAKE. Yes you heard that right – I’m sure you all know what prednisolone does to our appetite well for me CAKE was the answer. So I have baked and ate many a cake over the last 6 months and can’t you tell.

During all this life keeps on going on. There’s a husband to be a wife too, children although in their early 20’s still need their mum, a house to be looked after and visitors and a social life to enjoy. My husband Alby has been wonderful getting me to appointments and helping in lots of small ways. Someone said to me Alby doesn’t seem to be very emotional about all of this. My Alby is a fix it man so as he said to me “I just want you to get well’ and he does everything possible for this to happen. He has sat with me through many doctors’ consultations and afterwards it’s always good to go over the information discussed. We often hear quite different things and I encourage you to take someone else with you for some of these consultations. I know my brain was rather mushy at the beginning and my memory certainly poor.

I have made big effort to still be able to do many things with him so that life is not too different – I did opt out of canoeing on the Tambo in virtually subzero temperatures and gale force winds, I said no to a big day 4WDing, and he did have his hair cut down the street rather than by me. Little things have changed very subtly – for example he was opening a bottle of red bubbly recently – mind it was 10am and it just went everywhere. Normally I would jump up and do all the cleaning up – I just sat there and oohed and ahhed and felt disappointed for the lost drop – everyone else got up and cleaned up. I sat back and thought that in the past I would have been the first to jump up.

I often wonder why I got this disease. In a book I have had on my shelf for years it proclaims that you choose the disease that suits you. I had never read it – it is very confrontational when I did read it. It got me thinking (I do too much of that I’m sure) so I decided to have some counselling. I had mentioned that I felt the need for it to my GP and he wisely said wait until you are bit better which I did. That was good advice as when I did start it was hard work and a big stress in itself. After a few sessions I felt that it was just too hard and maybe was just all too much when it should have been the opposite. So my advice to you is that if you decide to follow this path of taking on some counselling analyse how you’re travelling with it. Maybe for me it wasn’t the right counsellor and maybe it just wasn’t the right timing.

About 2 months after my diagnosis I made the decision that I was going to start resuming some of the pleasurable things in my life again. I wanted people not think of me as sick – but as the old Carol just a little different. I decided that a good way of doing this was to have a Carol’s back on Deck party. So it was planned for mid Sunday arvo and when people asked what they could bring I just said food (that in itself was an adjustment for me – I love organising food) What a lovely gathering it was – I was hardly in the kitchen and was actually told to get out of it at dinner time.

One of the blessings I have had through all of this is having a good GP. Although I was angry at him for not being able to diagnose me quicker since then he has been the central cog in the wheel of my illness. In the early days when they were trying to get my medication sorted out he would just get on the phone to the rheumatologist straight away and get the answers right then. Most importantly of all he looks at my total wellbeing and often asks just how I am coping emotionally with it. At one stage he offered medication for depression and for not sleeping well but I decided that I didn’t need it – but it was good to know that I could ask for it and not be embarrassed. I suspect that he has found my case rather interesting – certainly more so than a runny nose or a temperature.

So how have you adapted to living with a chronic disease? For many the uncommonness of this disease leaves people feeling isolated, freakish and in a strange way separated from those around them. Denial, anger, frustration are common reactions when you learn that life has dealt you something painful and unexpected. I know I have probably talked about it too much to friends and strangers even BUT at the time I could not help myself. I feel as if I should go around apologising now to them that I gave them an earbashing. Oh well at the time it seemed important.

I’m sure that a lot you have had to make physical and emotional adjustments. Some of the adjustments I look back now on and have a quite chuckle. I was one of those people who always thought those funny high chairs in sitting rooms were a bit of a laugh – well not anymore – for someone whose knees didn’t work for a couple of months I’d head straight for them and get annoyed if someone else was sitting in my chair!!. I also became aware how difficult it is for disabled walkers. I was crossing from side of the street in Lakes and found myself on a little raised traffic island and then had to step across a gutter to the other footpath. I looked at the distance – about 40cm and realised that I could not step that far. So here I was looking down, making a decision that I might just not make it and having to retrace my steps and find another way. For a number of weeks I needed one of those raised toilet seats – yes the sort that my elderly dad uses (I always thought that they were a bit of a joke) and then had to develop a way of pushing myself up from the seat - yes it was the old hands on the seat between the legs and a good push up to get me upright. During all of this I developed a very wobbly walk – I was surprised to find I didn’t care if people saw me walking wobbly – the important thing was I was able to get around and out into the world. I was not at all worried about how I looked. I even feel the same way about all this steroid weight I have put on my face and neck. I really don’t care. As long as I look respectable and can do things. I have appreciated the little ways people help – offers of chairs, offers of carrying my groceries, etc and have regretted not getting a sticker for my car for disabled parking and a housecleaner for the first 3 months. So if any of you have only been recently diagnosed think seriously about this. You know people bring all sorts of gifts to a sick person – the gift of their company, flowers, food, candles, inspirational DVD’s but the best gift of all was a load of horse manure to kick start my veggie patch for spring. Sharon how thoughtful of you!

Well that’s the end of my speech. I have covered about 10 topics. What will happen when you get home and back to day to day life. My hope is that you have gained something from my speech that may uplift you, assure you, might inspire you, might change you in some way for the better, From my experience with conferences and key note speakers over the years – and many of them were paid thousands for their speech – You’re getting this for free, I can often only remember one point really well but I always take copious notes at these conferences as that helps my memory processes and what I have foundis that when I would re read my old notes so often I would have put a number of points into place even though in my mind I can often only remember one. This happened time and time again so even tho you may feel you haven’t achieved much by coming to this conference – I suggest you go over your notes in 12 months time and reflect over any changes in yourself as a result of this conference.

The very best bit of advice I have heard was by a doctor giving a speech on Wegener’s at a conference on U Tube – and that is that a chronic disease well managed you will live longer than a person who abuses their body and does not look after themselves. So the responsibility is all yours – ask questions, keep thinking about your medication and bless it – it’s keeping you alive , choose healthy and happy options in your life, get over asking why me and realise that there is a whole wealth of information out there from fellow sufferers who can be a wonderful support even if it is long distance on the internet.

andrew
12-12-2008, 07:13 AM
**APPLAUSE**

My notes:

1. It certainly takes some time to get over people asking who your oncologist is. Not to mention, people in the Chemo ward asking "where's yours?".

2. I recently started taking 'supplements' in the form of Fish Oil, Vitamin C and Green Tea tablets (very convenient!).

3. Regarding your words about going downhill in the mornings. I have a wall. I have found over the last several years that my wall has moved. You know the one I mean. It's the one that you hit face-first when you do too much. It used to be virtually out of site all the time and now I have a flat nose.

4. Prednisolone/Prednisone is certainly a wonderful drug. They had to make it wonderful otherwise the side-effects would be too much to handle!

5. I too have been blessed with a great GP and a great Immunologist. I'm very luck to have these two on the other end of a phone when I need them.

6. Oh, those high chairs! I wish I'd had access to one when I had the Arthritis.

7. I've always liked that you had a 'back on deck' party and good on you for letting others do some of the work!

8. I hadn't thought of looking on You-Tube so I'll check it out this weekend.

Thanks for posting the speech!

(Thanks for the mention of the site :) )

XnCelt
02-02-2016, 04:30 AM
Besides Rituximab every 6 months. This is my personal regimen:

1) 40mg Solgar Full spectrum Curcumin
2) 325 mg Grape Seed extract
3) 1000 mg Krill oil
4)Two 20 minute sessions of guided meditation per day ( mindful worship.com )
5) 12 hour water fast Tuesday & Friday**

Roger Newhall
USA
[email protected]

** "5:2 Fast Diet", supported by Mark Mattson, PhD, Chief of the Laboratory of Neurosciences at the National Institute on Aging Intramural Research Program


Sent from my iPhone using Tapatalk

debra
02-02-2016, 05:00 AM
Carol, thank you for all this... Awesome, you taking the time to do this... Also best of luck to you... Andrew, hello there! Andrew the tube gets both thumbs up frim me, its pretty cool... View the Mark Lesko story, Andrew, while you're there, and the seminars I mentioned previously on here... Ya, you tube rocks, for so many reasons... I pray, they never censor it, although they did start to late last year, cause thats how they roll... Take advantage while you can... Deb...

debra
02-02-2016, 05:03 AM
From! Not frim... Back to no editing! Knew it was to good to be true! Just a little tease... Debra...