The One Armed Wonder


The shoulder surgery went well although it was more difficult than originally thought, as my shoulder was dislocating in three separate locations and is also now deformed so it was difficult to access said location to repair them. However after a couple of hours in surgery and a very good surgeon he achieved all the repairs and stabilisations and I am now at home in a sling for the foreseeable future. All we have to do now is keep fingers crossed that the repairs will last for a little while.

I am still managing to knit despite the sling and am concentrating my efforts on doing some good and knitting, hats, gloves, scarves etc for the homeless. It makes me feel like I am at least doing something useful.

If I am honest I feel a bit flat, maybe it’s just the January blues but it does feel like I am still at square one with my health problems, none of the medication is working for my heart, we still don’t have a diagnosis on the underlying autoimmune disease. In 18 months I have seen 12 different specialist and continue to see several of them as part of my multi-disciplinary team. I have now had 3 lots of surgery and can see there being more in the future. I also keep researching things which probably doesn’t help as the vascular involvement in EDS to a layman would indicate type IV which is the really dangerous one that limits life expectancy. Of course this can only be diagnosed by a specialist geneticist after looking at the gene mutations in someone’s DNA so it is pointless worrying but it is a worry that probably everyone who has been in this situation has.

On the note of doing some research, I have found a number of papers that detail a link between vasospastic angina and connective tissue disorders, which is very interesting. I have put the accessible paper on the research page. The papers also detail the likelihood of raised C - reactive protein, which mine has been for at least 18 months. It does feel like this is a giant jigsaw puzzle, but one of those really difficult ones, (like a plate of spaghetti) and every now and again we get just a tiny piece that’s fits. More papers to take to my doctors, they must dread me coming in, luckily my cardiology consultant is lovely, maybe on my next visit I should give him this web address so he can read what I say about him ha ha.

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