yesterday today tomorrow

Well I didn't have a great day yesterday. A bit sore from the tests on Tuesday. Which was unexpected and as a result I was rather flat and lacking in energy. But it's good to know that yesterday's gone and today's a new day and I am feeling great and ready to face anything!

Received some cheerful email messages this morning. That also brightened up my day. And thinking about those and also our recent losses - Dad and Pat - made me a bit philosophical thinking about that really TODAY is all that matters and all that is under our control!

So...if you are visiting this site today....take a moment to think about how wonderful it is to be loved...think about the many people that love you...start with our family...we have a wonderful family and so much love that we are rich indeed! Then think about how much more you are loved by your creator. Add up all the love you know about and multiply it a thousand times and you will still be short. If you are sad and lonely....then realise that you are never alone in this world. That you are a child of God and that he wants you to know how much he loves you and to be comforted by it. You are beautifully made and perfect in every way. Any thoughts you have to the contrary you can safely discard because they come from the father of all lies. And when you can feel His love then go and love someone who may not yet be able to feel it! Tell someone you love them and brighten up their day!

Inge Christmas Eve 2002

Update on my status

It’s probably good to start with where I am now. Which is rather sad.

Early this year I was in a very bad situation health wise and a lot of pain. Worse than I have ever experienced. Ended up in Hospital for 5 weeks and the result was that I was diagnosed with a rather rare form of Vasculitis called granulomatosis with polyangiitis (wegener’s) or GPA. Most people know it as Wegener’s. It is very rare and that makes it difficult to diagnosed and as it behaves differently for almost everyone it takes a long time to figure out the best treatment. The drugs used are highly toxic however if you are lucky they will put you in remission. It is taking me longer to get there than I had hoped but I need to learn to be patient.

This was all rather depressing as I had been on a treatment for Autoimmune disease for 7 years which did help me in many ways but somehow this Wegener’s started to rear it’s ugly head and it may well be stimulating the immune system allowed it to get out of control. Although the confusing thing in my situation is that the doctors were expecting a lot of damage to vital organs however in my case they are all in very good shape, My main issues are all along the digestive tract, the ileum/colon, the stomach the eyes (recurring eye ulcers and inflammation) and also really bad sinus issues. I had sinus surgery in October 2013 however that didn’t fix the problem but according to my ENT my sinus are in much better shape than all of his other Wegener’s patients. Something to be thankful for. My eyes despite all the attacks on them since 2009 are according to my Ophthalmologist also in much better shape than all of his other Wegener’s patients. I can only put it down to the organ protecting properties of the main MP drug used, called Olmesartan.

So it’s now July and I am still on high dose steroids and immunosuppressive drugs. Each time we reduce the steroids seems to cause a mini flare so It’s been a struggle. I am avoiding going out as much as possible to reduce risk of infections as my immune system has been totally put out of action.

I am still very hopeful to get to drug free remission. I have joined several Wegener’s Forums so I know of a lot of others who are in remission and stay there for many years. That makes all this a lot easier to live with. I recommend anyone who suffers from Chronic illness to join some kind of support forum as you tend to learn more from other patients than from your treating doctors and knowledge helps you understand what is going on and others who are going through the same issues can support and provide comfort.

The drugs made me diabetic so that’s another condition I need to adjust to. I take insulin 2x a day and need to measure my blood glucose frequently to figure out what I can and can’t eat/do. Because I still have a lot of flareup of pain exercise is very difficult and that makes it harder to keep the sugar down.

Sometimes I feel like the walls are caving in on me. I am lucky to have a lot of friends online with whom to chat so that makes the time go faster and I am also trying to get a poetry book published. Slow progress so far. I have tried out an application called scrivener which is an authoring tool and hopefully that will make it easier for me to achieve my goal of a few small ebooks this year.

Testing to see if I can create a blog entry from my new Journal

So many years have bone by and maybe over time I can catch up with what transpired. Basically a lot of health issues and stressful times for our family.

I am sad I didn’t keep up some kind of blog as it would be nice to look back and also see the good times. I will try over time to fish information to of emails and backdate them if at all possible.

Ok now going to see if this ends up in my blog :)

Finally....giving this another go!

Well it's been absolutely ages and such a pity that I did not keep up this blogging! So much to catch up on! But here is at least a start.
We have just come back from a quick holiday on the Gold Coast. Was great. Managed to catch up with Susie, Max, Naomi, Daniel, Carissa, Georgia and Gloria (wow...what a big family) and also with Terry and Jan (Dennis' brother). Unfortunately Jessica and Malcolm were unable to join us. And then on the way home we had a quick drink with Lisa at the Big Banana in Coffs Harbour.
Apart from that it was driving, resting and walking along the beach. Picked up a bit of a souvenir from Port Macquarie. Probably 60, fair dinkum, no exaggeration, mozzie bites. Or maybe they are sandfly bites. They all happened in 30 minutes whilst we were sitting outside eating fish and chips. And because I didn't feel them bite me I tend to think they are sandfly bites. But I am still scratching/itching!
Unfortuntely on the way home from Port Macquarie we got some bad news. Dennis' uncle Pat (or actually the cousin of his father) died suddenly on St. Patricks day. Not bad timing for an irish catholic called Patrick. So the day after we returned home we flew to Sydney to attend the funeral. Which went well as funerals go. Was good to catch up with some long lost relatives.
And that's as much as I have time for today!