Hey all I'm new to this site, but not to GPA. I'm struggling to deal with it all at the moment, I have a lot of anger towards my condition as I was diagnosed at the age of 15 but was ill from the age of 7. I'm now nearly 31 and feel like it has taken my life away
New to this site: Hey all I'm new to this site... - Vasculitis UK
New to this site
29 Replies
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Hi Dylan - yes, it has taken a long time to diagnose my wife's condition(s) and you wonder why, sometimes. What makes it worse is that whatever they do to 'help' somehow gets to ruin your life even more! Incredibly frustrating. As the husband of a sufferer with Lupus and rheumatoid arthritis I feel just as frustrated as my wife does, but we try to think ahead to a time when all this is sorted and we have our lives back.
in reply to RupertKirkham
Yeah and during the time, there is little or no support at all. Its like going through a traumatic event, such a life changing diagnosis, its the emotional side I am struggling with the most. I have a lot of anger surrounding my illnesses
ludo in reply to
Hi Dyllan. You don't look very old from your photo so I'm not surprised your feeling angry. I've been diagnosed now for 12 years and have been in remission for some time so have managed to come to terms with it now. I get seen at Birmingham queen Elizabeth hospital. The nurse specialist there is very good and easily assessible. If there's one at the hospital where your seen she will be a good sounding board and maybe be able to refer you for some emotional support. You can always air your frustrations at me I will be happy to listen. Have you spoken to John and his team via the UK vasculitis website? Or you can e mail them. They can be found on ukvas website. Take each day as it comes. Wishing you well.
in reply to ludo
I'm nearly 31 lol! But I've been ill since I was 7 and diagnosed at 15.
I've never been in remission or symptom free, it's completely controlled my life.
Yeah I've been in contact with John since my diagnosis.
Thank you 
in reply to ludo
Thanks for spelling my name right
Hello Dylan, When I was first diagnosed with Rheumatoid vasculitis in 2012 and was hospitalised with it I still took a very positive attitude in dealing with the shock. I searched for a support group in London and found none except Jacqui Moran's "SE London and North Kent group. So I started up the London Vasculitis Support group which now covers all of London and the Home County's adjacent to London. It been three years down the line but we are growing albeit slowly. Still much to do though. The point is however, that you must take a positive attitude to the fact that you now have this disease and that it limits you in what you can do, sort off. I will tell you what I did.
With this disease I couldn't walk very well because of a balance problem despite the fact that I had been a wing threequarters in rugby. So what did I do? Balance, no problem, just ride a bike. I could only fall off on first attempt or I could ride. In the event I rode two miles. Yes it was painful towards the end but I did it! Next was to walk on a beach, mixture of hard mud and gravel. OK I had difficulty in doing that, in fact I froze and had to really think my way off it. The next year I attempted the same, Yea! I was able to walk all over the same beach. Several self challenges later I joined a part of a crew on a Scillonian Pilot Cutter for a two day sail. Now this boat is not modern, it is a very old design and needs lots of rope work, by the crew. We hit one of the worst sea conditions we could imagine but at the end of the voyage I was exillerated because I had done it!
The moral here is not to give in, to strive against this disease and its limitations that it imposes on you and overcome. You can do it, you are young and more able than most to meet with that challenge. By the way, I am 66 yrs old, travel to Australia most years, 24hr flight, with my wife who has other medical conditions. We also will travel to other destinations and this year I will again sail on that pilot cutter. I am also thinking of building my own boat if finances allow. So this disease does not necessarily limit what you do, only you do, if you give in. Challenge your self. And if you fail on the first attempt, try again! And again!
My motto: "Nos vivere sed mori. Sed non tamen. Sed non tamen!"
Translate: " We live but to die, but not yet, but not yet!"
That is a declaration to Life, Live it as best you will!
in reply to Albasain
Excellent!
Hi Dyllan
Welcome to the site. There are many helpful and knowledgeable people on this site. And are going through or at some stage have had similar feelings. feel free to express as you are amongst people who can relate to what you say. Have you family to listen and care for you. Also, where is your treatment based.
Great that you have found this site, keep in contact. Pam
in reply to cambs13
Hey thank you, I do belong to a similar site but I mainly use it to blog.
I only have contact with my brother but he has his one family to care for.
My treatment is at my local hospitals, Bournemouth and Poole
valrene in reply to
Hi Dyllan I go to Christchurch hospital in Bournemouth do you attend that one, I'm not very happy now with my Rheumatolagist feel he is just fobbing me off, first he said I have one thing and then he changes his mind, like you feel I'm wasting my life waiting for an answer, but John has given me the names of some proper Vasculitis consultants in Southampton and Portsmouth if I don't get a proper diagnoses from mine, I'm a lot older than you, you have your whole life ahead of you, if you want to talk I'm here to listen as well, feel so sorry for you that you aren't getting the help you need, please try and look on the positive side and don't waste you life worrying, I have been given a nurse who I can phone if I have any problems, they must of given you some one or next time you are there ask if there is someone you can talk to for emotional help.
Hi Dyllan, welcome to health unlocked. You will find the people on here are very supportive and a great source of information, thank god for the internet I don't know anything about GPA so I just looked it up .....sounds pretty awful. I can understand how Ill heath from such a young age must be very difficult to deal with and no wonder you feel angry. I hope that you are able to get support and advice from the forum and that you manage to have good enough health to do something for yourself that isn't about health care. If it helps, you are welcome to chat with me
Very best wishes , Sue
in reply to sue_b
Hey thank you. Yeah its not great fun to deal with. Especially the constant pain and fatigue.
Hey Dyllan, I read about your disease and my heart goes out to you. You have every right to be angry with all the trauma you're dealing with. I just wish there was a magical cure for all these autoimmune diseases out there.
You deserve better, and please keep us updated because this forum is a very caring one. You've had a mother of a time since age 7, and no one should endure what you have gone through. You'll be in my thoughts with your daily struggle, and I wish you pain-free days for the future.
Best, Louise
in reply to
Oh thank you so much I wish there was a cure too.
I will keep you all posted. I see my bone doc tomorrow morning, so will be demanding a few things.
Got a burst blood vessel in my finger at the moment, so its swollen and bruised. Its not the first time either and takes a while to heal.
in reply to
Sending a prayer your way Dyllan, and I hope you have a comforting and sympathetic bone doctor. So many surgeons are impersonal and far too clinical in my opinion.
I went to one who had the personality of a wooden toad, and changed immediately to one who showed more empathy.
Take care,
Louise
in reply to
Thank you. Not she's not great, she doesn't listen to me..so yeah I will be telling her what I want/need etc and see what happens.
in reply to
That never fails to amaze me - I can see why my grandfather was a Christian Scientist.
Seriously though tell her to listen up and cut the attitude.
P.S. My mouth gets me in trouble, and I blame it on the Irish in me - we never let well enough alone!
in reply to
I did tell her today what I wanted...and didn't get it! 
left feeling angry and disappointed
Hi Dyllan
I see you have had a number of great replies. What can I offer but be a "sound board" for you. If you would like someone to listen and try understand your frustration at times I willing to be there for you and will send you my email if you wish?
Keep positive!
Suzym2uModeratorVasculitis UK
Dyllan , Have you also shared in the VUK/HU community, that you have also told the VUK FB group you have stopped your medication a while ago and that you have written to John and he and others have recommended a referral to another hospital??? Many people have offered support and advice.
in reply to Suzym2u
Yeah I have. But my GP convinced my to give my bone doc one more try and if I'm still not happy with her then he'll refer me...
in reply to Suzym2u
I feel like you are annoyed with me for not taking the advice but I have taken the advice
No , just concerned you had not , you know you can always email John again for advice or support.
in reply to Suzym2u
I have, I'm trying so hard but not getting anywhere I cannot do any more
in reply to
Dyllan, I hope you get the right referral for another doctor because this other bone one seems to be not communicating well with you towards your needs.
Hi Dyllan my heart goes out to you I hope things improve for you soon . Have you tried alternative therapies I really find solice in them. I have cerebral vasculitis and currently have gastritis so really rely on them to get me through along with azathioprine ! I practise mindfulness, mediation and self heal with reiki . I learnt it in 2005 and have never looked back it really helps me. I manage to work part time and also volunteer at our local hospice where I offer reflexology and reiki. All the patients adore reiki and I have worked there since 2009 , It really relaxes them and really lifts pain there is always a queue demand is high ! One of my older patients had a broken hip and was waiting for a replacement but due to copd they had to wait a while the poor soul was in agony , he said the reiki worked better then the morphine patches . I self heal so don't take any pain killers which helps so much. It is not for everyone I realise that everyone to their own ! But I just though I would reply to you as it sounds like you are suffering a great deal. If you want anymore information of help down this route please just let me . Kind regards Diane
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