Monday, May 7, 2007


Well! My darlings!

What do you think of 'our Julie' being painted for all to see for always?! A brave, brave woman - and I think I can see some sadness in her eyes; very poignant indeed.

MS is being made more public now, thanks to people like Jooly. It's so easy to sit back and think about doing something to raise awareness. But oh! So much harder - almost impossible! - to actually DO it! I know, 'cos I'm one of the world's worst offenders!

You may remember that in my last diary I mentioned CUPID - a trial to see whether THC, found in Cannabis, would help with pain and perhaps go some way towards slowing down the progression in certain types of MS, namely Primary Progressive and Secondary Progressive MS. Well, my lovelies! I am officially on the trial after several visits to the hospital and seeing gorgeous neurologists as well! AND! We are paid our expenses!

You would have laughed at my expression when I was confronted with the mental tests! Pegs in holes and out again with each hand and a mathematical test which defies any description I can think of without swearing!

I have problems with short term memory (as do many of you! ) so this really wasn't an easy ride!

Arf and me met up with a couple of people who were also starting the trial and soon we were having a party in the Dispensary. The next time we meet - in a week from now - we're having vodka cocktails and nibbles, so if you would like to join us in Norwich…!!!

To date, I've felt NOTHING at all when taking these pills, except for feeling less agitated and having fewer headaches, so I'm now taking fewer tablets for these troublesome problems. Of course, it may just be the 'placebo' effect, but if I feel better, I'm more than pleased whatever the pill holds in it's little capsule!

On a lighter note, Arf kindly dyed my hair for me and now I am really red! Not even "Ginge" could match this colour! I've told people that I went in the tunnel for my MRI scan with mousy brown hair and came out with it looking like a burning bush! Actually I LOVE it and I don't think I'll ever grow old gracefully! Needless to say, I've hacked my fringe and will wear a paper bag over my head when my hairdresser sees me tomorrow!

I have a feeling that good things will happen for us all in the next few months. The sun is shining. I have yet ANOTHER two appointments next week at the hospital to see young and very handsome toy boys (the neurologists!). Arf has settled down with the tablets for his Diabetes and is doing well. And this morning, a lovely lady phoned me about my place on their list for a self-propelled wheelchair! She's moved me to another list which gives me priority! You can't get better than that, now, can yer?!

Now! Off yer go on the web and take another look at Jooly! See ya soon!

Monday, January 8, 2007

Peace & joy

Well! Hello My Lovelies! What a Year!

I pray that the coming year brings you peace and joy! I have to say that this past year hasn't exactly been the best year of my life, but out of tragic events come new friendships and bonds with family! You all know that depression gripped me during the last 12 months and has changed my life. I have to say, for the better! Now! Isn't that weird? But I'll elaborate in my own unique way, if I may?

I've mentioned that I see a therapist once a week and she has enabled me to open a door somewhere inside me and let all the frustrations and baggage just soar up into the sky and give me some peace! I'm not saying that everything is perfect but that I have the power within me to deal with left-over 'trauma' from my youth! This lady is also a very beautiful woman both inside as well as out and her way of thinking has brought me to a higher understanding of grief, anger, sadness, coping with 'life', and my relationship with my lovely Arf! Now how brilliant is that?!

There is some sad news. My brother passed away just before Christmas from cancer (such a ravaging disease, isn't it?). But I had some private moments with him and have no regrets. There is a deep sadness in my heart that won't heal for a while but I can remember all the laughs we had at Christmases together and now he is in no more pain.

You've probably heard about a trial called CUPID. CUPID stands for CUPID stands for Cannabinoid Use in Progressive Inflammatory brain Disease. CUPID is a clinical trial which will evaluate whether THC, one of many chemical compounds (cannabinoids) found in the cannabis plant, might slow the development of disability in MS. It's taken orally. And guess what? I may be eligible to try it! I'll know more in about a month, so fingers (and everything else you can think of) crossed! The trial lasts for three and a half years, so I was asked if I would be here in the UK for that length of time (I may be thinking of moving abroad or flying to the moon!!). Do you think that was rather an "in the air" question?! Anyway, I received the information about the trial this morning. It makes for some light reading at bedtime!

When we had our extension built in the summer. We made friends with one of the builders and this has blossomed into a deep and very rewarding friendship for all of us. Now this is something that wouldn't have happened without my having MS. My mental wellbeing is something I now treasure and protect! Bless every one of you who have given me hope and encouragement. And take heart, my beauties! JJ's has been a cushion and a soft blanket for me for quite a number of years now. Should you need the same comfort, come and let it help heal your heart.

See ya next month or so!