Home at last, 9.40pm in the evening, and I’m thoroughly drained physically and emotionally and sooo thankful to sweet hubby who after all these years of me doing this on my own has twigged that it makes a HUGE difference to have him there and so turned up at the hospital 🙂 🙂 🙂 …. but i have had soooo many messages and phone calls and so on about how today went (thank you thank you thank you!!!) that I want to write it down before I crash into bed (all drugged up!)
I woke up this morning and realised that all the major deteriorations in my health the last 6 months have actually happened on the months and weeks of most rest! Last week I spent an entire week resting because my shoulders were so sore from the Friday before when my crutches did the splits at the Pharmacy on their slippery tiles!! … and because we were away and it rained all week and NOTHING was wheelchair access and of course I didn’t have my wheelchair yet (it comes tomorrow now!!), I thought that I was doing myself a favour by resting but it has REALLY set me back! So I decided that if I have this surgery then the months of full bed rest will be a disaster for me! But I was still happy to go for the appointment and see what he had to say and was praying hard for a REALLY clear answer one way or the other from him, and if that answer was to be to have the surgery then I would be convinced…
Well the appointment was at 4pm, and I got there at 3.30 and didn’t get seen till 6.30 pm!! But I’ve seen him before and he is worth the wait… he is not rushed or stressed at all (from what I could tell) and he takes so long because he gives each patient all the time and care that they need! Rare and sooooo good! So when it was my turn I was determined to not feel pressure from those still in the waiting room and rush for their sake, but I soon forgot about them as we got into things… It was a long session and sooo thorough and I am beyond ready for bed and we didn’t leave till 7pm so didn’t eat till 8, so here is the brief version (paraphrasing!):
1: He looked at the latest MRI an confirmed LFI…
2: He does know what EDS is (woohoo!!!) so he said now it makes total sense why I have such a serious injury (LFI) from simply tripping over!
3: He said now it makes total sense that 10 months later it is not even a little bit healed.
4: He did not even try to push surgery! He said no way! He was so clear on it, so I felt that we didn’t even have to debate it and it made it SOOOO much easier that I had already decided against it this morning but for completely different reasons, so it was a TOTAL answer to prayer in that it was VERY clear in one direction, and with this mornings musing, I felt even more totally comfortable with going this way 🙂 The last time I saw him was pre EDS diagnosis, and he was totally pro surgery but now just being EDS and him saying no way to surgery, was soooo comforting, and reassuring and what a pleasure to have a doctor that knows so much!!
5: This then leaves what????…. well technically it leaves me with an unhealed LFI that can’t be fixed!!! That’s the bad news!! … but he did not just send me home at all!! He said, what now? And we sat in that for a bit, and he wracked his brains and looked at my crutches and I was able to share that I need to move to keep my muscles strong and that I do my physio in the pool most days … so he said he is going to do some research and ask some experts he knows, and see what he can come up with 🙂 🙂 🙂 … in the mean time he wants me to use Voltarin to try and reduce the pain of the foot and then if that works for me, then after a while to walk on it more. He doesn’t like my crutches and the way they may damage my shoulders but more importantly that they are not good for balance and I think he is right. So he wants me to use my foot more and be gentle with it … I think he liked more wheelchair and walking and not so much of the middle ground of the crutches and my gut tells me he is right. I am nervous of the crutches damage and also standing on my feet puts enormous strain on my right hip and left LFI, so the wheelchair for long distances and when there is lots of standing around, but he wants to me to work on getting off at least one of the crutches over the next few months so we will see how that goes!
6: He knows that cortisone injections are a no no for people with EDS, but he wants to talk to some specialists and get some thoughts on that and some ways to get around that and see if there are some other options.
7: He said that the LFI has sadly caused trauma induced arthritis in the bones around the injury as well, so that adds to the problem. 😦
But he did not brush me off at all, and in fact I got the feeling that he is going to be mulling over this a lot! My FABULOUS GP who referred me said that he is not only VERY good but that he takes on a challenge so I feel that I could not be in better hands! If there is a way for me to get a better working foot then I feel confident that he will find it! No promises, but I get the strong impression that between them, there won’t be a stone unturned!! My GP, who by the way is going to be getting flowers from me tomorrow because she didn’t even know what an LFI is (as is the case for most doctors), and yet she pushed the issue even after the hospital said it isn’t an LFI but she stuck to her guns and sent me back to the Orthopod anyway and I now feel that it was the right thing to do! I would have always wondered whether I should have had the surgery, or if there was a way to fix it, and yet now I feel that I am getting the best chance I can possibly get!
I am actually in awe, after all the horror stories one hears and even more the horror stories that I have personally experienced, of not being heard, being brushed aside, the bottom line is that my GP has TRUSTED me and is going the extra mile and is making this happen for me!!! … and has sent me to a specialist with the same attitude! ….
Don’t get me wrong, nothing is about to change and I find that a heavy burden and frustrating… but I am sooo thankful that I am not going to worry and wonder about whether or not to have the surgery!
So the good news is that we have a DEFINITE answer to the surgery question, but it also takes away my most obvious healing tool, and what I would be having in a flash if I didn’t have EDS (but then again I wouldn’t have an LFI if it wasn’t for my EDS) 😦 …. and so I am going to let that go …. and try hard not to get bitter about it … (not saying I won’t get frustrated and wallow a little!!!) …. but it does mean that this ain’t going to be getting better any time soon … but it doesn’t mean that we won’t do our best to try right!!!