On Monday my other half and I flew out to Washington DC for the medical appointments I have been wanting to deal with for some time. This is where the neurosurgeon who has a real understanding of how the Ehlers Danlos Syndrome body can affect the neck and make it unstable, is based. This is where I hope to get some answers, support, and help. It’s just unfortunate and sad really that I have to travel halfway across the world to get that. Sad that we can’t access it in the UK. But, needs must, and I travelled.
We have rented a lovely little one bedroomed AirBnB apartment in the Capitol Hill area of Washington. If you’ve never heard of AirBnB, I’d highly recommend you look them up. For a lot less than the cost of a hotel, we have the run of an entire apartment and it’s clean and in a lovely location.
Tuesday we took it easy, walked to the local supermarket in the morning and 
did some shopping and in the afternoon we walked some more, taking in the local neighbourhood, which is so pretty. Though, it might be classed as a legal nightmare in the UK. The pavements are block paved and some of them are very uneven and wave-like. Some are even all uprooted where tree roots have pushed up. This would give the sue-everyone-for-everything people a field day as they walk around with their tape measures for lips in paving slabs back home.
One thing I found and loved was a tiny library in a garden!
Also, a number of squirrels running free along the gardens. Beautiful little animals all over the place.
Yesterday we took our first trip on the Metro as I went for my CT scan and MRI. The Metro is absolutely cavernous. It’s also really easy to use and a lot less hectic than the underground in London.
Today I take my CT and MRI discs to the neurosurgeon and have the all-important appointment. This is the part I am terrified about. I am absolutely terrified that he will tell me that though my symptoms are bad, I don’t fall into his criteria where he can help me, which means I will have to continue to live as I have been doing, which, to be honest, is no quality of life for any person at all. And if this is the case, then I’ve wasted a lot of money to get over here and a lot of hope in the process as well.
So, if you can spare any hope today, I’d really appreciate you sending some my way because you’re probably reading this before I get to my appointment.
You might have seen me on social media the past couple of days, but I will probably be quiet today and tomorrow as I digest what comes out of the appointment, be that good news or bad. Even good news, is bad news in itself.
When I’ve had time to take in the results and digest them myself, I will update you. And also keep the picture diary flowing of my time here.
Thank you in advance for any hope help. It’s much appreciated.
Best of luck Rebecca, my thoughts are with you xxx
Thank you Caroline xx
Rebecca, wishing you all the best and lots of hope the doctor has good news for you.
Thank you Prashant. Keeping my fingers crossed.
Fingers crossed for you! Hope it goes well x
Thanks Lindsay x
Hope it goes well for you x
Thanks Jo x
Sending lots of positive thoughts your way x
Thanks Sarah X
Hope you get the news you’d like, and that everything goes well.
Thanks Martin. I appreciate it.
Hope it all goes well (or went well – I’ve not been paying enough attention to the timeline). We’re all rooting for you!
Thanks Graeme. We’re still on ‘goes’ well 🙂
Keeping everything crossed that you get the diagnosis you need for further treatment. Good luck 🙂
Thanks Claire.
I hope the outcome of your trip is everything you hoped for and more. Sending all the hope I can muster, and wish you really well…
Thank you. Fingers crossed:)
Reblogged this on Anita Dawes & Jaye Marie.
My thoughts are with you today. Sending lots of hope your way
Thank you. It’s much appreciated.
Great to read what’s happening, sending hugs and well wishes. Fingers and toes crossed
Thanks Louise. 🙂
Hi, my name is Jackie, I’ve contacted you before. I want you to know I’m thinking about you and praying for the best result for you. I have very similar problem and my quality of life isn’t good either. Thinking of you and hope you get this. Jackie x
Thank you, so much, Jackie. Sorry to hear you struggle too.
Sending lots of positive thoughts your way Rebecca, hoping you get the news that you want x
Thank you, Mel x
Positive thoughts and prayers, Rebecca. So glad you have someone with you!
Thank you, Jo x
Thinking of you, Rebecca. Good luck xxx
Thanks, Christine. I appreciate it xx
Thinking of you, Rebecca – the very best of luck! Nice to think of you in my old haunts (I worked for several summers in DC, around Dupont Circle). Hope you have good weather and get to enjoy the cherry trees (it might be a bit late for that, though).
Thank you, Marina. I didn’t realise you worked here. I am late for the cherry trees but I have spent some time in DuPont Circle! The bookshop, bar and restaurant combined – Afterwords 🙂
Wishing you well, Rebecca, and sending all sorts of positive energy and good thoughts your way. I hope you do have a lovely trip to DC, no matter what your answers are, and thanks for inviting us along for the ride.
Thank you, Margot. Though I’ve been very shoddy at any kind of update. I thought it would be easier to take in than it has been. But I will 🙂
Hoping for a peaceful outcome and a positive path forward. The Capitol Hill area is lovely – your comment about the uneven walkways is novel to me – as a DC native I always thought of them as a sign of history, rather than a hazard (which they are). But Great Britain goes back a lot further than the States!
Thank you Frances. The walkways are lovely, and must have taken some time to pave like that! But yes, in the UK people would be having a field day falling over them. Which is sad really.
I’m thinking of you, Rebecca and really hoping that this neurosurgeon can help you. I’ve been though similar and I know that feeling of even good news is bad news. As I said on FB recently, I am here if you ever want a chat. Sending hugs xx
Thank you, so much. I feel a bit stuck to be honest. I thought it would be so much easier to talk about, afterwards. After all, I’ve talked about it all so much before coming here. But now, I feel closed down. I’m sure I will though. Thank you again xx
I can understand that. It took me a long time to get my diagnosis (different to yours) and then once I did surgery was booked very quickly. I couldn’t talk about it for a while, it was like I’d pushed for so long to get help and then when I was proved right to have pushed, I was lost. I’m here if you ever need someone to talk to. I hope you’re as ok as you can be in yourself. xx
It’s just like that. Feeling lost. Thank you for your continued support. It really is much appreciated. Xx
I’m always here if you want to talk – anytime. xx
Really hope it all goes well, Rebecca. Thinking of you. x
Thank you, Clare x
Good luck, and I really hope they can help.
Thank you, Pam.
I hope you already have the good news, Rebecca. I’ll be awaiting your results.
Thanks, Jacqui. I feel a little tongue-tied with it all at the minute but I’m sure I’ll be able to say it all soon 🙂
Wishing you all the best Rebecca.
So sorry to read that our NHS is lacking in this area.
Take care
Roger
Thanks, Roger. It is sad that many of us have to travel like this.
Very true
Prayers you get the answer you need to get help!
And I thought the USA was the land of sue everybody for everything?
Thanks, Alex. And it would seem not, not if you saw these walkways! 🙂
Sending you positive thoughts and best wishes, Rebecca – hope they can help you!
Thank you, FictionFan. I appreciate the support.
All my love to you. Thinking about you very much. Suzanne x x
Thank you, it’s appreciated. x
Good luck, I hope it all goes ok.
Thank you.
Thoughts are with you! I seem to find myself in a similar boat and though I wish none of us were dealing with this, it does help a little to hear there’s others trying to push on too.