Thursday, 25 June 2009
Sometimes I am uncertain as to how much this disease is progressing. If don't feel particular stiffness i suppose it's fair to say that it's quiet but I'm never quite sure as my fingers are not in good shape anyway and even if the disease is quiet they won't function properly anyway, due to damage. Last evening I forgot to take my anti-inflamatory which has to be a good sign.
Now I must wait for my real life to calm down so I can begin the next phase which is fasting and the elimination diet.
Wednesday, 24 June 2009
The other phenomenon I have tried to focus upon is that of positive thinking. Not being a doom and gloom type naturally I haven't thought in the past that I needed to do this. But of course when you have chronic conditions to cope with it is inevitable that sometimes life is a struggle and we wouldn't be human if it didn't affect us. So when I find myself navel-gazing about my condition I check myself quickly, pull myself up and tell myself it's getting better - even if there are setbacks - I will get better. As a result I am finding my arms which are affected by lymphoedema (which means my lymph fluid doesn't drain properly - a result of cellulitis triggered by taking etanercept, an immune suppressant for arthritis) is much better. It is certainly responding to my mental attitude.
It is so important for us not to categorise ourselves as victims. That kind of attitude can weigh us down pshycologically and make us feel heavy.
Tuesday, 16 June 2009
Today was a black cloud day. I went to bed last night feeling very, very sore and stiff. I partly attribute this to eating some gluten-free cake that I think may have used a wheat flour with gluten removed (wheat makes me stiff) and a cranial and general osteopathy session I had on Friday. I know it's a while away but it was a tricky weekend with visitors, some tension etc, and I think I kept the reactions in until yesterday evening.
Today I woke up much physically better (but clumsy) yet emotionally I was a wreck. Everything I could think of was wrong and I felt quite sorry for myself. I cried a bit on and off and was very tired.
I don't know if this is a 'healing crisis', or what. At one point yesterday I even wondered if I was going down with swine flu as it is going around in the Midlands area. Gulp. Can't imagine what immune reaction I'd have to that one.
I'm almost done with the book (Conquering Arthritis) and need to prepare for the fast/reintroduction phase. Of course this has to be planned around life and not done when we have social events I can't get out off. A good friend has offered to do this with me. I wish I had a even better friend to cook for my kids whilst I'm doing it!!
I have also been reading about and practising, mindful meditation. Barbara Allen says it was a big part of her healing process and particularly used the vipasanna method which I tried today with a tape. It is a good way to control pain.
Ah well a good night sleep and no doubt tomorrow will hold a little sunshine.
Thursday, 11 June 2009
It began in my foot, then one day my index finger ballooned like a sausage. I was pushed around a few doctors before I actually did some research, and put the psoriasis (which I hardly have actually) and the arthritis together, told the rheumatologist my thoughts, and bingo.
I was devasted, I remember walking home thinking, I'll be in a wheelchair, I won't be able to care for my children, my husband will have a different wife to the woman he married. Looking back now, I can see how ill I was, tired from having two young children, breastfeeding, living abroad (Montreal, Canada), missing my mum, and dealing with the extreme weather conditions.
Thing progressed quite slowly and I managed. I went on to have a third child and after that (now back in the UK) my doctor really wanted to put me on immune-suppressants. I was very, very, reluctant. I already had coeliac disease (gluten-introlerance) and had a gut feeling this sledge hammer approach might upset my body even more.
Eventually I had to give in, I saw x-rays of my hands, which are the main areas affected, and I knew the damage was already quite extensive. I had to start doing as I was told. I was put on Etanercept and anti-TNF drug administered by self-injection. For a year I felt great, really great. Then one day my arm started to look a bit red and I felt as if I had the flu. I went to bed and woke up a few hours later with a very red arm. My husband took me to the hospital and I was told I had cellulitits. I was kept in hospital and given intravenous antibiotics. This happened three times before I was taken off the Etanercept and then I was left to self diagnose myself with Lymphoedema as my arm didn't return to the same size that it was before.
The only treatment for Lymphoedema is Manual Lymphatic Drainage (MLD) and compression garments. It makes the arthritis worse because my fingers swell, that makes it harder to move the joints, which makes it harder for the lymph fluid to flow...and so it goes on in a vicious circle.
So for now the doctors have given up on treating me with these immune-suppressant drugs and in some ways it's a relief as I was always suspicious that I would just end up destroying another system in my body.
Now there has to be another way. Actually after 15 years I am now convinced there is. So I'd better get on with it.
Wednesday, 10 June 2009
Although I am planning to finish the book and get her recommended reading and tests completed before I embark on any more diets, I have done a couple of things.
- Started each day with a pro biotic drink.
- Cut out coffee
- Cut out prescribed gluten-free food which is corn based or gluten-free wheat based.
Already I feel the benefits of this and am hoping I can reduce my diclofenac (an NSAID) as this is thought to exacerbate the leaky gut syndrome which I am sure I have.