Travelling Across The Atlantic For Medical Help

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.

IMG_1448We 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 IMG_1498did 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!

IMG_1492

Also, a number of squirrels running free along the gardens. Beautiful little animals all over the place.

IMG_1529Yesterday 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.

 

 

60 thoughts on “Travelling Across The Atlantic For Medical Help

  1. 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

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  2. 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).

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    1. 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 🙂

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  3. 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!

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  4. 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

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    1. 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

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      1. 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

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  5. 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.

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