A New Year, new things discovered, new hope!

 

Happy New Year! 

Our trip out to the States seems quite a long time ago now so thought I would touch base with how things are going.

The results from the many many lab tests came back about the middle of December and I had a 2 hour Skype call with my Doctor to discuss them.  Although she had warned me about the multitude of problems we were dealing with, I had been a tad on the Pollyanna side - hoping that the situation was not as complicated as she suspected.

Her many years experience and thoroughness examining me meant in this case she was bang on and I needed a bit of British stiff upper lip after seeing the results in black and white (and some reassuring hugs from my lovely husband!).

In many ways it is reassuring to know that it was not just bad luck which resulted me being so seriously unwell.  We now know that it is a combination of three tick borne diseases, a zoonotic disease, biotoxin illness, autoimmune disease and some pretty interesting genetics.  Layers of an onion indeed!

Treatment can trigger worsening for a while so the usual rollercoaster of good days, bad days, good hours, bad hours looks set to continue for the time being.  This can be very confusing to people "But you were ok half an hour ago?!" and the unpredictability of it is still right up there on my list of what frustrates me the most :-(

Still, it is best to know what you are dealing with, especially when you finally have someone experienced on board who can look at the whole picture and who has a plan.  I do love a plan.

I have been forewarned that the road ahead is still long, I will need to continue to work as hard as I can to recover but continued improvement and ultimately a full recovery is expected - yippee! 

So that's me for the time being, I'll touch base again in a month or two all being well. 

In the mean time, as ever, thank you for your love and support.  You are all awesome :-)

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.....

 

Riding the Lyme rollercoaster

Well my friends, it has been a very interesting three months so I thought I needed to bring you up to speed with my recovery!  (Ooh, it sounds great to say that!)

Frustratingly after my last post I deteriorated again and had about a month or more of being very poorly indeed.  Classic case of doing too much and a big bacterial die off reaction from my new medication is thought to have triggered it. 

Despite taking all my pills and potions, green juicing, resting, meditating, praying and so on, it was day in/day out flu-like symptoms again.  Desperate times called for desperate measures and I had heard from multiple sources that maybe I could help myself by changing my diet further.  So I said goodbye to sugar, carbs in all their other forms and dairy - having already become gluten free and grain free earlier on in the summer.

Well.  The improvement has been almost unbelievable.  Within 10 days the horrific fatigue that left me laying down every day in August lifted by about 80% - it was honestly like a miracle.  Since then my recovery has been steady and I continue to feel improvements daily.  Prior to this I was having to measure slight improvements month by month otherwise it was all too disheartening.

By the end of October I was able to drive short distances most days, walk Matty three out of seven days (my friend walks him on the other days) and meet up with friends without having to plan days after to recover.  Wonderful!

October was a busy month with hospital appointments that are dealing with the aftermath of having a persistent infection for so long.  But I seemed to cope well with train journeys up to King's and many many tests. 

It looks like the Lyme bacteria has damaged the way my heart conducts electricity, but the hope is that this will not cause me any major problems.

My kidneys are also struggling.  Let's face it, they have coped so well for so long with many different drugs to treat the Lyme disease, it's understandable that they need a rest.

So I have to take a break from treatment....just as I was getting better...AAARRGH!

The USA doctor that is currently looking after me likes to treat you for several months after you experience no symptoms of infection.  I still have pain, muscle twitches and moderate fatigue so not technically there yet, albeit improved.  There is not much I can do about it however, I've only got two kidneys and there is no point beating Lyme to spend the rest of my life on dialysis.

More patience and faith is required.

I am still on the waiting list to see one of the top Lyme doctors in the USA.  The waiting list has increased and while I was hoping to be out there at the end of the year, I have been told it'll be more like April.  My hope is that this doctor will be able to iron out all the last bits of this disease so that it never comes back again!

Having this as an option, even though I will have waited a year for the appointment, is only possible due to all you wonderful people who contributed earlier in the year.  Not only have you insured that there is enough money in the pot for that but also you have covered much of the treatment costs over the last three months.  Everyday I am grateful and thankful.  Where would I be without you all?!

So that's all for now folks, sending you all love and thanks xxx

 

Happy times

Well it's mid July and scorchio outside so I thought it would be a good time to update you on the last few months of happenings.

After another Skype consult with my USA doc, medications were altered and by the first week of June there was a definite improvement.  Couldn't put my finger on it but everything just felt different.  I went on to have almost 2 weeks of feeling the best I had in over a year - fantastic!

During these couple of weeks I managed to do normal fun stuff- see Ben Howard (no wheelchair required, yippee), have my lovely friend Gill to visit, do another Lyme awareness TV interview (ITV this time- http://www.itv.com/news/meridian/update/2013-06-14/lyme-disease-threat/), and meet up with a couple of new friends AT A PUB (lime and soda's all round).  Basically more than I'd done in months!

I also was so lucky to have Jenkins Dog Services arrange a sponsored dog walk for me (http://www.canterburytimes.co.uk/Sponsored-dog-walk-raises-1-000-vet-s-treatment/story-19376662-detail/story.html) - they raised a staggering total of £1400 - simply amazing!  It was so good to be able to meet many people before the walk and thank them in person.

Add to that the continual donations from clients and friends from Toachim Vets, plus Emma McAnally from Merial adding to the pot - I am still overwhelmed and feel very privileged to have so much financial and emotional support.

Even though after all this I went on to have a pretty rough time, I bounced back after about 10 days - just in time to get married!!!

Nick had secretly proposed to me a little while ago and we decided to plan a surprise wedding while we were in Scotland with friends.  We have obviously been through some rough times and saw no need to wait - life is there for living!  So we shared our special day with our great friends who helped us with a last minute wildflower bouquet, photography and music.  These wonderful friends did not mind that I was back in my pj's within two hours of getting married, needing a few hours sleep to recover from all the merriment.  Our kind parents paid for our rings and our time away, my dress was £3.99 from eBay - note to anyone out there getting married - it can be special and unique without costing a fortune!

The week away was wonderful, my body coped well and we saw some amazing wildlife - perfect.

It does feel like I have turned a corner, I am having more time awake, less pain and less recovery time is needed if I do anything daring (eg do some housework, cook dinner or meet up with friends, so actually not that daring!!).  Some recent blood tests are showing that despite the general improvement, my body is finding all the medications I am taking hard and I spent this morning having some scans and tests, but I hope this is just a blip.

This Sunday our family are joining us at Nick's church for our wedding to be blessed which will be wonderful.

Onwards and upwards my friends! 

Love and thanks for all your support from the new Sarah Bignell-Howse

The Master Plan May 2013

I am so overwhelmed with what has happened over the last two weeks, everyone has been AMAZING.

I never dreamed that we would be able to raise £7000 and I simply cannot believe that this has been achieved in two weeks!

Firstly I need to say how grateful and thankful I am.  You are all wonderful examples of human beings and I am so proud to have you as my friends.

The sum of £7000 was based on several UK people who had gone abroad for treatment.  It is so hard to estimate for medical problems (as I know all to well when doing estimates at work) but I calculated that this would cover an initial appointment, blood tests and maybe 6 months worth of medicine (although this is VERY difficult to guesstimate).  Of course I am ever optimistic that I'd get away with just one appointment and do the rest via Skype!  I will keep the fundrazr site open and use some of the extra funds to pay for the on going medications which Nick has been funding so far, so thank you once again - I never dreamed that this would be possible.

The doctor who is looking after me out there at the moment is a lovely, knowledgeable Lyme Literate MD.  We have Skype consultations but as he has never seen me in the flesh, I then have to take his recommendations to my GP and work with her.  She is as helpful as she can be, within NHS guidelines. 

Pretty much since my faculties came back to me I have been researching treatment, doctors and options.  I have been placed on a waiting list to see one of what I call the uber Doctors in the States.  That waiting list is 10 months long ie unless something amazing happens, it will be early next year before I get to see her.

My plan was to do all the ground work with my lovely LLMD and GP ie take the pills, go gluten/wheat free, physio, meditate, acupuncture and get back to work.  Then as soon as the appointment came around heading out to the States to ensure I have done everything in my power to get rid of the damn bug once and for all (my risk of relapse is high as I have been so ill for so long).

I also thought it would take many many months to raise the sort of money I needed.

Well, all of your generosity has opened up more options- there are other doctors I could consider, and I could go out and see my lovely LLMD in person.

I've been quite poorly this week - my medication changed last week so we don't know whether this is a die off of bacteria (yeay!) or me sliding back a bit.  Once I recover some energy beans I will suss out these new options and get back to you all.

Any money raised that is not used in my treatment will be redistrubted to other Lyme sufferers, so that they can benefit from your generosity too, if that's ok!

 

Thank you, thank you, thank you for your support xxx