So finally I have had the genetic test, hopefully this will shed some light on the underlying condition, now all we have to do is wait patiently for anything up to 8 weeks. I have been in a lot of pain with my angina, elbow, knee and spine, which means I am not sleeping very much and taking a lot of painkillers. I am certainly concerned by my spine and next time I see my consultant in London I will speak to him about who best to see. My elbow and knee I am sure will need surgery at some point in the near future but I am less concerned by them. The angina is what it is, we are rapidly reaching a point of doctors not being able to do anything.
My elbow has become more and more of a problem so I made an emergency appointment to see my consultant. The x-ray shows swelling in the joint, which is consistent with the instability and it is irritating the ulnar nerve. We are going to try some physio, keeping it braced 24 hours a day and some more different non opioid based pain killers. Unfortunately, unless by some miracle it suddenly starts to get better I am now heading towards surgery on my elbow in a couple of months’ time. Unfortunately the surgery is not a simple one and they won’t know how much re-building they have to do until they get in there, they may need to take ligaments from my forearm and graft them into my elbow to increase stability and then create a new route for the nerve. I really do think I am falling apart one joint at a time.
I have also had a review with my GP this week, I am very lucky that I have a very good GP and sometime in the future she will be the primary doctor managing my care, instead of the hundreds of consultants. She is great and manages most of my medication, which is no small list. I do have some very specialised medication which has to be prescribed and dispensed through the hospital as it is not available in this country and has to be imported from Japan. She also keeps on top of all the letters from my consultants and manages the holistic approach, as the consultants generally only look at their speciality and not the whole picture.
With the possibility of vascular EDS hanging in the air, I have been thinking about my own mortality and what legacy I will leave. I guess for many people their legacy is the continuation of their blood line, their children. Whilst I am a step mum I cannot have children so that rules out that. As mentioned my husband is a paramedic and he can, hand on heart, say there are adults and children alive today because of what he has done. There are babies that were born safely because of his intervention and there are families who’s lives have been made a little easier at a horrendous time of loss because of his work and his compassion. Working in banking I certainly can’t say the same. So what is my legacy, what small stamp have I put on the world to make it a nicer, better world? As of yet I don’t think I have done anything of note, there are small things, like knitting for peace, the knitting I do goes to the homeless, so someone is a little warmer because of something I have done. I am also trying to raise money for a local charity who install public defibrillators. But that’s not really a legacy. I hope my PhD and the offshoots of that will be my legacy, so I guess I still have a lot to do, no getting rid of me just yet.