I thought now would be the appropriate time to tell you all a bit more about my upcoming CD and explain more of the background to it.
Over the past year God has been prompting me down a path to record this CD with my two friends Naomi and Andrew. As a group we want to worship and glorify God through the gifts He has given to us.
However I also want to share with you where the proceeds of the cd is going. As many of you already know I was born with a genetic condition called Ehlers Danlos Syndrome; this is a complex disorder which affects connective tissue; supporting 85% of the entire body. As a result, the “glue” which is supposed to hold my body together doesn’t work; causing many severe problems, particularly my shoulder which has now been dislocated for 7 months. As you can see from this pictures below;
Since starting this blog you all have read, to some extent, how this affects my daily life and the suffering I have been enduring, not only with my shoulder but with all the other symptoms EDS causes. Recently I also shared with you how I would be going to London for inpatient specialist treatment. In fact in my last post I stated I would be going before Christmas, however now due to administration and funding errors London will not be happening anytime this year which has caused me a lot of upset this week. I just desperately need to get there, the pain is horrendous and as each day goes by I’m finding it harder and harder.
Anyway, when I do get to London I will be staying in hospital for a number of weeks at a time, Monday to Friday; where I will recieve treatment of all kinds, including muscle and nerve treatment to get everything working again, I will also have a specialist rehabilitation course with physiotherapists who know lots about EDS. This intense treatment will probably last for a year and then things will slow down, however more than likely I will always be a patient there. I will also be receiving help and support from numerous doctors, surgeons and other specialists in many different areas of expertise for the various ways in which EDS affects me.
Although this will not cure my EDS it is hoped that it will drastically improve my quality of life. My first and foremost aim is to have a shoulder in its correct place; however the plan is that the team in London will teach me how to relocate my joints and I will have a set up that allows me to live life as best as I can and to improve my quality of life.
On the outside people may not see a lot of difference. Some may expect that after treatment to see no wheelchair or dislocations or anything; the likelihood is that I will still have all of these. But the thing is my quality of life will be improved, whether that means less pain, dislocations, more energy or whatever else – at the moment who knows!
London is a place of hope for me, they are only 1 of 2 specialist centres in the UK for EDS, there is no doctors in Northern Ireland that can help me, and to be honest my life needs to change because right now having a permanently dislocated shoulder among my other symptoms is not right, the pain is horrendous and it has left me virtually housebound. Right now I desperately need to get to London and get started with treatment as soon as possible.
Although the NHS is paying for the actual treatment, I will be staying in London for long periods of time, many times over the next year. However unfortunately the ward, due to its speciality shuts down at the weekends, therefore this year will be extremely costly for me and my family. I will have to find a suitable place to stay at weekends which caters for my EDS needs and furthermore my mum will have to be there every weekend to care for me since I require a full time carer. As you can see this will be a lot of upheaval and expense, therefore all proceeds of the CD will go directly into ‘the Carla Higgins fund’ and will be used for these purposes.
It’s not long now until the CD launch and at the moment everything is crazy busy with planning, coursework and then the pain, dislocations, physiotherapy and fatigue that I also have to battle through each day. I would really appreciate your prayers right now, and not just for me but also for my family and for Naomi, Andrew and all those who are involved with the CD and its launch. We now have a facebook page for our CD and nearer the time I will also give out more information regarding the launch. However in the meantime if anyone has any questions or anything they need to say, do not be afraid to send me a message. It would also be great if you could all ‘like’ our Facebook page at:
Thank-you everyone who continues to read my blog and support me. I truly appreciate it and although I may not get updating you all regularly or may not get responding to every message, please be assured I read, love and appreciate every single message and person. I am so thankful and you have no idea how much you all help me with your comfort, encouragement and kindness. God has been my everything through all of this, He has been my rock, my protection, comfort and shield. Under His wings God keeps me safe, bringing me under His arms for refuge. Whatever the future brings I can trust in Him.