This is my Wegener's granulomatosis [WG] story. My symptoms started in
December 2006 [age 25], I was finally diagnosed in October 2007 and I went into
my first quiet phase in April 2008. Now that the WG is quiet we are
working to fix the problems I am left with.
WG is a auto-immune condition and a form of vasculitis, this means that
my immune system started attacking healthy body tissue and my blood
vessels are inflamed. Treatment is steroids and immuno-suppression - both of which come with a whole host of side-effects. Time of writing 17 September.
We got the hearing loop set-up. It is lovely! Band practice is once again and option. I do not sound good, I am very out of practice, but at least I can hear to know how bad I sound... or something. My voice used to be very strong and loud. Now it is quite weak sounding and my range is much different. I'm doing my best to practice, but the depression makes it difficult.
I had the assessment for the pulmonary rehabilitation programme, I am not a good candidate for it. I am much more active than what the programme expects. Instead the physiotherapist is going to work with me 1-on-1 to help me move forward. She was very kind and I am excited to work with her. She also referred me to a dietitian to see if there are any changes I should make. Hopefully with both the physiotherapist and dietitian backing me up chest doctor will leave me alone about my weight. I am still struggling with anger/bitterness/listlessness/depression and still waiting in the queue for some therapy. My GP has been very supportive and helpful while I've been waiting. Often I'll say things like, 'my life is over' and he'll correct me gently and say it is not, it is just different. And I know it logically, but emotionally I am still not convinced. Unfortunately, on 19th April I got an ear infection. Blood tests put my CPR [level of inflammation] at 10 so I had to put the steroids back up to 5mg. I did get the full six weeks on 4mg. It felt so amazing, I had a lot more energy. Ah well. The ear infection cleared up by 20th May, only to have another one develop so I am on a different antibiotic for a week to get it under control. Vasculitis people were happy with my care from the GPs but moved my appointment with them to a Friday so I could see their ENT just to be safe.
March & April 2009
I haven't heard anything re: counselling/therapy yet. I'm still fighting the blues as best I can. Lovely spring weather helps. Also, I have been working with the social inclusion people, I've joined a knitting group and a book club. I'm enjoying both of them so far. My last vasculitis appointment went well, I am officially tapering the steroids! I am on 4mg a day now until 29th April, then 3mg. I get to go down 1mg every six weeks until I come off. We have to go very slowly to discourage a flare. Chest clinic went as expected really. I'm still fat. I've stopped eating 'treats' and I've been exercising more. Haven't seen any changes in my weight, but I feel better. I've been able to do the full 60 minutes of yogalates. I've been walking and cycling more too. I'm hoping that he'll give up on my weight number and just focus on how healthy I am. Meanwhile, I have been referred to a lung rehabilitation programme. As far as I know it'll help me to build on what progress I have made, help me to cope with my condition and hopefully keep me moving in the right direction. My assessment is in May, I'll know more then. My birthday was on 11th April and my family very kindly got together to get me a domestic hearing loop. I'm very excited for it to arrive. I'm hoping it'll allow me to participate with band practice. I've been setting my alarm clock 10 minutes earlier in a bid to get myself working on a normal schedule. So far I'm managing, tired and sore, but no more than usual. My application for the hearing dog is finished and I'm just waiting for them to come for a home assessment now. I might have fudged the truth about my last appointment with my chest doctor. There is nothing else they can do; my current state is what I get unless things go bad again. I was in denial about the whole thing. It had a few weeks to sink in and I have been very angry and bitter. I saw my GP in January and he referred me to be assessed for Cognitive Behaviour Therapy (CBT). He also told me that my diet was completely normal and that I was right in just focusing on trying to exercise. I have been doing yogalates regularly, going for walks and cycling when I can. I haven't been rowing as much because I find that very uncomfortable and occasionally scary. I went to the CBT assessment and turns out it may do more harm than good for me. I'm hopefully going to hear next week whether it is that or some other therapy. I've also been referred to the Social Inclusion Team. I gather they're good at helping people find a purpose to their lives. I'm waiting now to hear when things start now. Physically, nothing much has changed. I'm still tired, still sleeping strangely, still having some joint/back pain, etc. Mentally, everything has fallen apart. This is made even more difficult because my ten year high school reunion is this year so loads of people are finding me on FaceBook and asking how I am. I struggle because I don't want to tell them how horrible everything is at the moment and I do not want to lie either. So far I've just said surface things like I love the UK and I'm happy with my wife and the weather. I don't like feeling like this.
Keep reading... December 2006 to December 2007 |