H&H Part 3 (Specialist appointment yesterday)

So yesterday was the specialist appointment at last, and I am still trying to process it all! I don’t really know how to explain how my brain works and all the processing going on, as there is sooooo much that happens in these big moments, and I found myself at the end of the day COMPLETELY exhausted both physically and emotionally, and was really down away by how much so! I know that some people will say that I shouldn’t over think any of it (and certainly I shouldn’t EVER think things), but I also know that I am only at this point and have gotten so far BECAUSE I think so much about it and process things deeply and unpack them and deal with the little things, which more often than not at this stage of my life aren’t that little at all (and hopefully as I explain further that will make more sense!)…


The appointment was at 11am, and I basically spent the morning stressed out of my tree! Which had all kinds of implications including feeling ill as I ate breakfast, lots of faffing, waking up too early, and worst of all leaving my ultrasound DVD at home which had been sitting by my bed for a month so that I wouldn’t forget it! It’s not that I LOOKED all ditzy and crazy I just felt a bit wound up and kept forgetting things. I also used up some of the time by blogging about the upcoming appointment which helped with some of the stress a lot but more than that it helped me to unpack and make a list of things that were REALLY important to me to ask and understand in the meeting. I was then able to copy it into an email and take out all the gibberish and make a decent list which I sent to both of us so that we could go over it in the car on the way there and both be on the same page about what we wanted to achieve.

My husband had offered to come with me which he has been doing as much as he can the last six months since diagnosis, which is a huge change for us both. I am used to doing this alone (not exactly happily) and he is used to hearing about it afterwards and that’s all. It’s a long story why I have mostly been doing it alone but without a diagnosis the bottom line is that you treat each incident as a whole instead of part of the bigger picture. I have never had my hand held and didn’t even know that I needed it really! I’ve had to be strong to survive and yes company is great but it’s not like I ever NEEDED it right? Also it’s funny how our brains trick us right? Even though I always knew there was a connection between all my health issues, you still hope that things will improve, that if you downplay things then you will get over them quicker, and people won’t be bothered or annoyed, and so much of it can’t be explained anyway … and …. and….

So I drove to his office which was roughly half way and hopped into his car for the drive over and it was great to chat in the car and feel really prepared, and it wasn’t until we walked in the hospital door fifteen minutes early that I realised that I had left the disc at home !! He had been very clear about me needing to bring it and I REALLY needed this appointment to go REALLY well, and now we were starting off on the worst possible footing (other than being late!) Being late would have been WAAAY worse, but we were weren’t late, in fact we were early, but forgetting to bring ALL the vital information was not going to help! It was bad enough that we had NO idea how this meeting was going to go. Having done my last surgery and so much having “gone wrong” it would make sense that he would be defensive, or think we were blaming him, or for him to try and find a different cause. It was a huge unknown and the last few appointments with him were totally and only about me in a great deal of pain and him telling me I can’t be! So I was already PETRIFIED! On arrival the receptionist was NOT happy which didn’t help, she had always been so chatty and lovely eighteen months ago when I had had my original surgery, but now she was not pleased AT ALL (hopefully only about me not bringing in my stuff but i can’t be sure). I suddenly lost ALL my confidence and determination and with all my experiences of not being heard, being bullied by doctors, fear of having this thing railroaded, and with having so much riding on this meeting and so much unknown, I was not feeling good at all!

So we chatted and I was soooo glad that my husband had come and I could share my fears and nervousness, and he was great and said that it has already been determined that I have a hernia, and there is still so much to talk about and that’s when I decided to return that afternoon with the disc, but in the mean time, let’s just take the hernia as a given and the back up info can come later, and just work through our list!

(said list: https://myheds.wordpress.com/2016/01/07/hernia-and-hysterectomy-part-2/)

But because I left the DVD at home, we didn’t even get as far as ANY of my questions which I am still processing because in theory that makes the meeting a bit of a disaster and yet I feel really good about the meeting for completely different reasons!

Well in so many ways it was great. He saw my crutch which I hadn’t thought about him not expecting it! He had had some big chats with my GP and knew about my LFI but I guess he hadn’t expected the crutch, so it was a good opening point, although I very quickly apologies and told him that I didn’t have the disc. Well in a nut shell, he was fabulous! I knew in my gut that it was the right thing to do to go back and see him and not try and find someone new, and afterwards we both felt affirmed that this was exactly the right thing to do! It’s funny how you can come out of a meeting feeling that it was a success when in fact it could potentially be all and only REALLY bad news! But to be heard, to be listened to, to have someone stop and think and bring their own expertise to the table in a logical, helpful way, is super encouraging!

We were so impressed that he didn’t just have an opinion and give it and that was that. He had all the background information, he had clearly done some research, but he didn’t pretend to know everything about EDS or LFIs, and he asked me about what research I had done. He didn’t just assume that I had also been doing research though, the way he said it I felt as though he expected it! That he expects his patients to be informed and not be idiots or not be proactive with their own health is impressive I think. He knew the basics of the past year since he had seen me, but also wanted to hear it in my words. This meant a lot, and not just in a warm fuzzy way and me wanting to feel good! He made notes and asked questions and I really got the impression that he wanted a more full picture and wasn’t just humouring me!

And then we got down to the nitty gritty. We basically didn’t even get to the list! It DID make a difference that I didn’t have the pictures with me, and it WASN’T a given that I have a hernia even though that is what was very clearly on the ultrasound! I am sure that by having the pictures he MAY have been able to say one way or another, but in some ways not having them there may have been kind of a good thing, because we spent the time with him explaining a whole ton of things that no one so far had even thought of. Again, he had clearly been doing a bunch of research, and he said some incredible insight into what we have ahead of us. And mostly, it isn’t good news.

The bottom line is that is isn’t simply about “if I have a hernia then we HAVE to go in and fix it”.

So firstly, there are different kinds of hernia and what causes them. If the hernia is jumping through a hole in something then yes potentially you can close the hole. But it could also be popping through a gap between muscles, which is more complicated but they have mesh that usually covers that job. But even more importantly, it may not be a hernia but a bulge! A bulge?! Am I being dismissed again? Nope… my understanding from what he said yesterday is that if there is a weakness in the muscle or other tissue, then the hernia isn’t actually popping all the way through, it is just producing a bulge. That may sound simple, but it is actually more complicated because how do you fix it? If the tissue is so weak that it is thinning and allowing what it behind it to push it into a bulge, then there is no hole to sew up, no gap to cover in mesh!

And if you stretch the tissue to make it cover the bulge then that tissue will become stretched with other complications and also likely be fragile and it will thin and weaken too. The bulge is as painful as the hernia, and will likely get worse and worse over time. And seeing as I can do very little at the moment and it has deteriorated so much in the last year, the prognosis ahead is bleak at best!

So before we even look at the surgery and healing and complications and hysterectomy and and and ….. we first need to get a WAAAAY better look at what is going on, and even the disc that I left at home which is of the ultrasound isn’t enough to determine that! And while we are at it, we had been have a proper look at that mysterious right ovary that shouldn’t exist! So the plan coming out of there is that I would drop the disc in later in the day and that first thing this morning he would take it down to the Radiology people downstairs and they would look at it together and decide what they can see and what we will do next which would likely be an abdominal MRI and get a PROPER look at everything.

So I feel like I am in limbo again and totally waiting waiting waiting and I he said we aren’t in a hurry but I explained that I am in soooo much pain and can’t do anything or get any exercise and he said well I am not allowed to do anything in case it gets worse but by the sounds of things it is going to get worse anyway and they won’t be doing anything 😦

So why am I feeling that it was a success? I think that what I NEED is someone who is on my team, who will bring their expertise and know how and skills to the table, to do the best thing for me and not take short cuts or do unnecessary things. And that is what he is doing! I am frustrated that we have gone backwards in many ways, but I feel that that is the right thing to do and that if they open me up it will be the best thing possible and that they team will know what they are doing! We also learnt that he does not repair hernias, a different surgeon will do that, so we both felt very overwhelmed at the thought of THREE specialists having to team up for this surgery if I have it! Each doing their specialised parts!

So I am processing all the new information, the frustration of going backwards, the crappy negative thoughts of more MRIs and being poked and prodded and daunted and frustrated at the time frame and the long long journey ahead. And so now I wait! I wait for someone to phone me and tell me what test is next and when and how and why. I am concerned that it took a standing up and coughing ultrasound to find the hernia in the first place, and so how will they find it with a “don’t even breath”, “still picture”, lying down MRI???

And most of all I am totally daunted about the idea of this getting worse and never getting any better!

Oh, and we had lunch afterwards in the hospital cafeteria (how cliched is that!) … which I realised that I have never done before because it is always me in the hospital bed or I go home! … but more than that, my husband said how much that place freaked him out. I asked why of course, and he thought long and hard. One of the reasons that he has not been around when I am in with doctors or hospitals is that in his words he grew up being “conditioned against illness”. We were reminded that back when we had been dating only a month or so I picked up a cough that I couldn’t shake. For me it was nothing new, I did not by any means grow up a sickly child and had no idea that I had EDS, but all the signs were there and things like a cough were really hard to shake. So it was annoying and frustrating and so on for me of course, but in my world it was also my normal and that was that. But after about a week his mother took me aside and sternly spoke to me about “pulling myself together” and that this had “gone on long enough!” She was not pleasant about it, and it made no sense to me whatsoever, but clearly this “cough nonsense” was unacceptable and I needed to do something about it! Which of course I was doing all that I could, and at nineteen and desperate to please I stayed away, stifled coughs, hid as many of my symptoms as possible and generally downplayed the whole thing as much as I could!

So incredibly sadly, one of the foundations that we have built a lifetime together on, has been one of me stifling, hiding, and downplaying my symptoms, and making light of them. And as this is how he was raised he never questioned it! Never pushed me to find out what was happening, never held my hand or asked questions and was only too pleased for me to handle it on my own! And so many of the more obvious symptoms have been forgotten by us both, the outside world was never let in and we “rose above” all this “nonsense”!! It has been MASSIVELY costly to us both but especially to me, and I am soooo proud of him!! Firstly for when I got my diagnosis last August to make a conscious decision to be there for me at all these stupid crazy time consuming awful appointments, but also for the way he has coped and embraced my wheelchair, my crutches, my inability to do the things that I used to be able to do, and then yesterday for being able to articulate that fear rather than simply repress it, and then think and talk through all that and what is at the base of that fear and name it!

So while for most people that tiny interaction in the cafeteria may be nothing, or at the most a small thing, for us it was HUGE!!! …. and life changing! … and also really really sad! Sad at what we have lost, what fell through the cracks, what it meant for my health in irreparable ways!!! …. but it was also a HUGE step in his awakening and freeing from something that has crippled him his entire life!


One thought on “H&H Part 3 (Specialist appointment yesterday)

  1. Jen you are an incredible communicator – no holes in the story – I love how you let us wholly in to your journey of EDS before you knew what the bumps along the road were and now so many questions and mystery are being revealed to both you and Doug. This certainly helps to explain how our lives from a very young age make us into who we become as adults – your struggle was under the radar for so many years and now a lunch in a hospital with Doug has been a HUGE learning curve. You are one very brave, courageous woman – an example for each of us to learn another lesson. Blessings, love and hugs. Shirley xo


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