Worth the wait!

 

Well it was a long time coming but our time in the USA flew by so quickly, it seems almost unbelievable that I'm back home writing this update!

 

We were delivered safely to the airport by some wonderful friends and got lucky with an almost empty flight so I was able to lie down - fabulous :-)  Even though the flight really wasn't that long it was quite a strain and made me realise how much harder this journey would have been physically even 6 months ago.

 

After a great night sleep we hit the road and my wonderful husband drove us out of the city via Manhattan as the New York marathon was on.  It was a bit bonkers looking out of the window at the Statue of Liberty!!

 

Thanks to recommendations from friends who had also made this pilgrimmage, we settled quickly into our new home.  The view from our window was across a nature reserve and the trees were wearing their beautiful Fall colours while birds of prey flew overhead - doesn't get any better than that! 

 

The appointment with the doctor was the next day and crikey, it was thorough.  I had to take some breaks to lie down before, during and after as no avenue was left unasked about or examined, the initial appointment taking 3.5hours!  Over the next few days there were more blood and lab tests but I was in good form so we were able to squeeze in some lovely walks too.

 

The doctor was very optimistic about my continued recovery and felt that my long term prognosis is good - it was like music to our ears and we both felt quite emotional to now have an expert looking after me.

 

While we were waiting for various medications to arrive we were lucky enough to catch up with some friends of ours who we haven't seen in over a decade.  It was just brilliant to hang out, chat and be looked after -forever grateful to them.

 

As a very special treat another of our wonderful friends had arranged a night in the Big Apple for us before we headed back home.  This was so kind and generous and we had a great time checking out Times Square and Central Park.  The photo at the top of this blog is from the staircase where we were staying :-)  Thank you again Fairy Godfather!

 

So, here I sit, Matty by my side on the sofa.  The journey has knocked me around a bit so I am taking it very gently.  I started all the new medications a few days ago and am awaiting all my test results.  It seems like the pieces in the jigsaw puzzle are finally fitting into place and although I have to continue being patient, I am excited to be on my way back to full health.

 

Every day I count my blessings for all your help and support.  Thank you just doesn't even cover it!

 

I'll keep you posted and in the meantime, consider each and everyone of you hugged xxx

USA bound!

Hello lovely friends

A very quick update to let you all know that I have finally got the appointment with the specialist in America!!!

I almost couldn't believe it when I got the call, it seemed like it was never going to happen. 

It's a bit of a team effort with my lovely husband, family and friends to get everything organised so it will be a busy few weeks.

We have so much hope that this will be a real turning point for me and once again I want to thank you all for making this trip possible.  Your support and encouragement has really lifted me during some very dark days, honestly, you've no idea how much it has helped.

We go in November so I'll let you know how it goes!  Sending much love to all xxx

 

 

3 steps forward, 2 steps back but making progress

Just a little update for all of you kind friends, I know it is somewhat overdue!

I had hoped that by this time I would have had my long awaited appointment in the States and would be writing to let you all know how it went.  Unfortunately, due to a combination of the doctor changing premises, illness and even the very bad weather over winter, my wait continues. No date in the foreseeable future and I have been on the waiting list for 13 months.

Despite this set back my wellness team (now consisting of an endocrinologist, nephrologist, cardiologist, nutritionist, acupuncturist, GP and USA Lyme Doc - via Skype) continues to help me make improvements.

I'm much more mobile and have less days flat on my back in pain.  The good days way outweigh the bad days.  Good days can involve 4-5 hours in the morning when I can feel pretty good, walk Matty, do light household chores and catch up with friends/family.  I still need to rest for several hours in the afternoons but tend to rally for a few hours in the evening too.  Bad days, well, you can probably imagine :-(  To give you an idea having a shower requires the rest of the day in bed to recover.  Gives a whole new meaning to patience!!!

I have been so much improved that Nic and I even risked a week away together - our first one ever on our own.  Luckily Nic is very used to carrying everything and looking after me so not only did I manage, but I felt pretty good for 5 out of the 7 days - fantastic!

Most of the money you helped raise (about £8000) remains safely tucked away for our appointment in the States when it happens.  The rest has paid for my on going medications and appointments so far, without which I wouldn't be sat here writing this!  So I send you all my thanks again, and gratitude.  I'll keep you posted.....