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.