2nd July 2019

Hi all, 

Hope everyone is keeping well.  So much to update everyone since my last blog.

Well had to have a biopsy done thankfully all clear so one less thing to worry about now.  It wasn’t as bad as I thought it would be the procedure was painless.  Think it’s more the mind working overtime then panic sets in.

 I am still battling IBS-D now for the last few weeks I will get days of overactive bowels which is just horrible.  I am left feeling drained and have to lay down and rest.  

 I have just had my second lesson in yoga.  I am learning chair yoga in hope it will help with the swelling and some of the restricted movement I suffer from.  Although, I have had to lay down after the lesson and had some discomfort I hope this is going to be manageable.  

 Since the new pain medication, I have managed to stop the Gabapentin, cut down on the Dihydrocodine and take less Paracetamol.  I feel I am doing slightly better for taking less tablets.  I have managed to go shopping even though it’s in a wheelchair. Been able to attend a funeral and even went to look at the sunset. All great leaps each time I go out I give myself a pat on the back.  Still need to plan any toilet issues.

I am trying to do certain things but I am not pushing myself too much it’s just baby steps at the moment. Just wish there was a treatment for the Dercums Disease.  This has played up a little not surprising with the stress recently. I suffered the Tietzes (which is awful chest pains), this can start at the front of the chest and work itself round to your back.  When this hits, I have to lay there and wait for the medication to work. Luckily, I (touch wood) haven’t had an attack for about one year till the other day.   

The other update is I am under Gyno which I am now back on the pill.  I am hoping that this will make the women’s problems less a problem for me.  I do think my Addison’s Disease is effected by that time of the month and to be truthful I was having a bad time with my periods.  

I have suffered some painful hands and painful legs due to the Behcet’s but think it’s partially weather related and due to when I get tired.  I still struggle to know which disease is attacking me on any day as each day is so different.  I think that is one of the hardest things to try to explain to people it’s not like a broken leg where the pain stays in one place.   

I was looking at my presentation I did for the hospital and one of the most important messages I can give is having to learn to adapt to this new life. Yes, I get frustrated because I can’t dance anymore but I have learned new things. I feel I see things differently too. Like I have more time to notice how different each plant in my garden is changing.

 Motto: Don’t give up because you never know what’s round the corner.