30 May 2017

Hi all,

Sorry it has been a while a lot happening here.

I have passed my diploma and since had two major infections.  One nearly had me hospitalized with a high temperature of 39.  I have never felt so bad and had no control on my body shaking.

I have also fainted with low bp one reading as low at 70/50 not sure if that is the Addisons playing up.  I have had cellulitis on my shin area thankfully it seems to be under control at the moment.

The swelling I have found a couple of new lumps in the fatty tissue so the Dercums is not any better.  If I do any extra activity (i.e. walk a little more on my sticks) my body it becomes more inflamed.  

The Behcets I hope will improve slightly with the weather improving but I find it hard on damp, cold days.  

I think the hardest part is the people who look at me and think I am over weight due to eating all the time which I say is not true.  The amount of medication I take I am now starting to question and Steriods don't help with the bloating.  I am still not sure on why the IBS is so bad that I have to take several Immodium.  If anyone has any ideas on this please?  I am on currently 20 tablets if not more daily and do wonder if this has made the ibs uncontrolable.

I have been able to get out on good days with a carer or my son.  Now we have the transport I have more freedom and can take the electric wheelchair out.  This means I have more indepence when shopping.  I felt very frustrated in being pushed around this gives me a little control back and keeps me sane when shopping, on a bad note this might mean I spend a little more.

I keep saying to myself it could be worse I just won the unhealth lottery with such a range of auto immune diseases.  Only happens to people whom can cope with this and there are worse off people.  I keep fighting this and hope you are all too.  I am considering whether to talk to groups about these diseases and how invisble some are.  I do think if more people know about these things then more research might happen.  Hopefully one day a cure or something to moderate the conditions.  Keep the faith and take each day as it comes.

The house and garden are coming on.  Our first Jersey Royals have produced and had enough for friends and neighbours.  Strawberries, raspberries, blackberries are all going to produce along with the runner beans and our apples.  

Well signing off now as homework to do.  I am learning sewing and the lovely lady teaches me from home which is handy as I find it hard somedays to leave the house.

I do hope you are all well and if you need anything just send us an email.

Motto: Keeping fighting this and try to remember this is just a big hill to climb but we will get there in the end.