Thursday, 12 September 2013

Access: DENIED

Happy Autumn one and all!

I want to share with you an experience I had last week which in my world has unfortunately become only too common. My rheumatologist who I have been with since I was 18 - who supports me fully with my decision to treat myself holistically - is now semi-retired. It has become increasingly difficult to get an appointment with him and soon he will retire completely and I will be left with a team of 'text-book readers', as I like to call them. As in, the young rheumies straight out of med school who think that no matter what you tell them, you can't be right because they read about it in a text book and heard about it in a lecture so they must be right. You know what? As someone who has suffered with the same illness for 27 years and has overcome the worst of it more than most people are able to, I think I am better qualified to make those decisions and I hate these young Dr's who think otherwise and are condescending. ("I'm sorry Miss Vaknine, but if you don't take these infection-inducing, life-threatening, organ damaging drugs, your joints will be permanently damaged and there will be nothing we can do to fix it, and it will all be your own fault, not ours." "Actually Dr know-it-all, I've had this since I was 2 and aside from a 10 month stint where I took a drug that nearly killed me, the rest of the 27 years have been drug free and lo and behold! I have no damaged joints! My joints and bones and muscles and organs are in better condition than any of the people who have been on these drugs for long periods of time and, actually, everything about my body is how it should be for a normal 29 year old. Explain that??") You get the gist... But they still don't EVER look at me and say, oh, she might have a point, look how healthy she is, perhaps there is something in this - 'why don't you tell me more about that Miss Vaknine?' - said no conventional Dr ever! Aside from Dr Keat... he is wonderful. Agrees that whatever works for me and keeps me looking and feeling normal is what I should continue with and should I need an injection or a draining or some advice every so often, he is there to help... anyway he recommended a new rheumy that I should go and see so I can - begrudgingly - start with a new one so that I'm not left in the lurch when Dr Keat retired.

So I went... She barely looked at me - always a great sign when they're more interested in the notes in front of them than the person in front of them. I'm sure if she gave me 10 minutes I could tell her more about me than the notes could. The first thing she said was 'how can I help?' I told her I needed a new rheumatologist as my current one was retiring. Second question? What medications are you on.... and this is always the volatile part... 'None. I treat myself with homeopathy, supplements, diet and other holistic therapies such as kinesiology, osteopathy, acupuncture...' she smirked, and replied coldly... 'ok, so you don't have an ACTUAL treatment plan?' 'Errr that is an ACTUAL treatament plan, just not the one you administer. I appreciate and respect what you do but I choose to treat myself in this way, it is what has worked for me personally over the years.' 'You do know that your joints will start getting very damaged very soon don't you?' Here she goes.... 'Yes Dr, a paediatric rheumatologist told that to my parents when I was 2. I'm now 29. Still waiting.' 'Well that's not a very good attitude is it?' 'Well, I think it's MY attitude, it's my decision, it's my choice. It works for me. I have no joint damage, have never had surgery, I have no deformities. I feel good, that's the main thing isn't it?' 'No,' she answers, 'I'm very sorry but if you're not willing to follow the treatment plan recommended by us then I'm afraid this isn't the right place for you, I think you should find another rheumatologist.'

I would like to say I was shocked, but I wasn't. I've had this before and have heard it from other people who have been through it. 'Are you saying you refuse to treat me because I treat my illness holistically?' I asked. 'I'm saying that I don't think this is the right place for you.' 'Yes, I think you're probably right.' And with that I got up and left.

I'm not an expert, but I'm sure that when doctors take the Hippocratic Oath, they swear to treat all patients free of judgement and discrimination.... does anyone know if what she did was even legal? I wouldn't want to see her anyway but it would be good to know...

Whether or not I use their medications, I deserve to be monitored like everyone else with the illness. I should have my blood tests and xrays and scans when needed and have a doctor read them to me... no??

So, this was the story. I'd like to hear your thoughts on it... was she right in turning me away? Or are you in agreement that people have the right to choose how they treat their bodies when it comes to illness and anything else? If someone is clearly harming themselves its different. But the facts speak for themselves here when you look at me and look at my scans and bloodwork. So opinions please?

Friday, 28 June 2013

Wheelchair Wedding - Part 2

Where did I leave off? Oh yes, I'm in Israel, a week from my wedding unable to walk. Well there was no miraculous recovery. No Vitamin D related miracles as everyone suspected.. "your body hasn't seen the sun for a long time. As soon as you get on that beach and your legs touch the sand you'll be fine!"... Well, no, not really. First day, we went to the beach. Second day, we went to the beach. Third day, same. Nothing. And on Wednesday we had to make the journey to Jerusalem to sign the marriage documents and I burst into tears in the rabbis office because I couldn't believe I was collecting my marriage certificate in a wheelchair.

Thursday - beach. Nothing. And everyone was starting to arrive. I was devastated because they were all seeing me in a wheelchair and I couldn't enjoy my time with them like we'd planned. We had so many events planned and I was just getting more and more stressed and more and more anxious by the minute. On Thursday afternoon, after succumbing to the fact that the hundreds of people - from all backgrounds and denominations - all over the world praying for me, the so-called healing sand, and the 'wedding adrenaline' weren't working, I decided to call a doctor. I figured if Hashem, Allah, Jesus Christ and The Virgin Mary couldn't cure me, we needed to call in 'The Mortals'.

Friday morning. In walks Dr Butcher - as he is now affectionately known to us. 5ft2 and 20 stone, wearing jeans and a counterfeit polo shirt with breath to rival the entrance of the rhino enclosure at the zoo. And I'm being told to relax! By this point I just figured that things couldn't get much worse so I might as well take off my knickers and let him put that humdinger of a needle in my bum cheek. Which he did. It hurt but it was a nice distraction (from his breath, and the pain.)

After handing us his bill, we paid, and he left. I told Daniel to go and entertain our guests by the pool and I had a little nap. Lo and behold - blessed be Hashem, Allah, Jesus Christ, Lord Ganesha, The Virgin Mary, The Dalai Lama, Buddha and every freaking rabbi in the holy land I was standing on - I COULD STAND. And I COULD WALK. It wasn't immediately 100% better but after a few hours I felt relief. And when I woke up on Saturday morning I was able to put my feet on the ground and get myself to the bathroom. I was so excited I woke Daniel up at 6am to tell him.

We spent that day at the beach and come Monday, I was well enough to enjoy my wedding :)

Albeit I am the only bride in the history of the world to fall asleep in the wedding car next to her husband be on the way to our wedding! (A story for the grandkids)

The day was perfect. I had to sit down at lot and by about 11.30 they brought a chair to the dancefloor and I sat on it as everyone danced around me. By the end of the night, my wonderful husband put me in the wheelchair and wheeled me to the coach that was taking us all home and we got a great picture of it which I will post when I get it. But for the time being, below is a picture of me on the day. Who knew I couldn't walk 3 days before right???

Thank you to everyone who supported me through this time. It really was the hardest time of my life and having to mix that in with what should be the happiest time of my life was very difficult and extremely testing on my faith. But we got there in the end and the most important thing is that Daniel and I are now happily married, back home, and apart from a bit of a dodgy hip, flare free.

Happy Friday everyone xxx

Wednesday, 26 June 2013

Wheelchair Wedding - Part 1

To say it has been an emotional few weeks is a bit of an understatement. I don't think I've ever felt so many emotions in one time period...

So here's what happened. We were due to leave for Israel for our wedding on Sunday 2nd June (wedding on Monday 10th June) and the Sunday before that, I came down with some sort of horrific virus. It started with a sore throat and I woke up at 1am with a raging fever and insanely ridiculous joint pain all over my body. This kind of joint pain I have only experienced once before - and for someone who has had Rheumatoid Arthritis all their life to say this was bad, it really must be bad. The last time I experienced this pain it was only in my knees. This time it was every joint in my body and it felt like something was attacking them, like knives and saws and needles - that is the only way I can describe it.

I lay writhing in pain for hours while my-then fiance tried to figure out what to do. He called NHS Direct (always useless), an on-call doctor, and finally, an ambulance. The paramedics came and I have to say, my experience of paramedics has always been a great one. They are usually wonderful and caring and helpful. But this time - not so much. They acted as if they didn't want to be there and were bored and this upset me even more. To the point that when they said do I want to go to hospital and at first I said yes, they said 'well you'll have to walk downstairs.' I couldn't walk. Don't they carry people on those seat style stretchers all the time?? I changed my mind and said I didn't want to go to hospital and they were very happy. In the meantime they'd left the door wide open the entire time they were upstairs and unbeknownst to us, the dog had run out and we lost him. The paramedics left and Daniel was looking all over the house for Milo and I was stressing and crying as I couldn't move but I was so worried about the dog - he's like my child! Daniel then had to leave the house (at 4.30am) with a torch calling out for Milo and in the process waking up the whole street. After about 10 minutes the paramedics called us to say they could see him down the road so Daniel ran down there and got him. I've never cried so much in all my life.

Once we'd calmed down from this ordeal I suffered another fever and come 7am we couldn't take it anymore so my mum came round and we all headed up to A&E. I was literally rolling around in my wheelchair in pain so when the triage nurse told us to take a seat back in the waiting room I nearly screamed. I needed to lay down. So they gave me a cubicle with a bed and after about 40 minutes the cocktail of diazepam, cocodamol and ibuprofen kicked in and I calmed down.

I left with antibiotics even though they weren't sure if it was a virus or an infection and had to come back to my parents house as Daniel had work the next day and I continued to have raging fevers every 6 hours that lasted 2 and a half hours at a time. This went on for 2 days and the fevers were real shaking, sweating, shivering, painful type of fevers. I've honestly never been that ill in my life, I don't even remember the last time I took antibiotics or had a fever. After those 2 days my throat swelled up, I got severe headaches where I couldn't open my eyes for 7 hours at a time and the joint pain continued, just on a more dull than sharp level. And all the while I was on a countdown to when I was due to leave for my wedding which obviously made me even more stressed. I was so ill I didn't even watch TV or read a book until the 5th day.

By the Friday I felt a bit more 'human' again and by Sunday the virus was much better but I couldn't walk. We got to the airport and as we sat at the gate and I looked over at my wedding dress in its bag while I sat in my wheelchair waiting for Special Assistance to escort me onto the plane, I burst into tears. I couldn't believe this was happening. I've never asked 'why me' with my arthritis, but this time I did ask 'why now?' I just couldn't understand it. I couldn't stop crying and my parents were scared they were going to kick me off the plane. I stopped and calmed down but the flight was extremely traumatic - physically and emotionally.

We arrived in Israel with me utterly spent, in pain, and unable to walk - having to take the wheelchair everywhere and having to be carried to the bathroom, with 1 week to go until the wedding...

I'll leave you all guessing as to what happens next until my next blog post tomorrow...

Friday, 19 April 2013

To Vaccinate or Not To Vaccinate?

As I'm sure many of you are aware, the recent cases of Measles in the UK has caused concern within the medical world as to why people are not vaccinating their children. Some parents are lashing out at the parents who are not vaccinating their kids, calling them 'bad parents'. But it has come to my attention that most of these people who are quick with their opinions on who is a bad parent or not, has never had a sick child.

If your eldest child had a vaccination and then got diagnosed with Autism, would you give your next child the vaccination? Most people say no, they wouldn't, for obvious reasons.

We're hearing today that peer reviewed trials have been done and there is 'not a shred of scientific evidence' to prove that the MMR (Measels Mumps Rubella) jab causes Autism or induces any other disease.

What I am about to say now is purely my own view on the situation. Let us imagine for a moment that these research trials were done and the scientists found evidence that yes, in fact the MMR does increase chances of autism, and the National Health Service in this country, along with medical bodies and governments around the world have let this happen, there would be international outcry. It could never happen. Even if there was scientific evidence, I don't think that they could ever come out and say what they had found because the repercussions would be huger than Thalidomide in the 1960's.

I accept I am sounding slightly like a tin foil hat wearing conspiracy theorist, but when it comes to health care, and the way our modern society believes health care should be, I am a conspiracy theorist and I believe wholly in what I say. Do you think that in 2013 when they can put men on the moon, play a Will.I.Am track from a satellite on Mars, and we can communicate instantly through computers and telephones, that there is no cure for cancer? I think there is a cure for cancer, but if they give it to everyone the pharmaceutical companies and therefore the governments stop making money. Let's be honest, whether you know it or not, we can find most of what we need for our health through natural sources including fresh fruit and vegetables and certain herbs but if they 'allowed' the uneducated sector of the pre-conditioned public to know this, no drugs would ever be sold. Why do the Royal Family use homeopathy and very rarely use conventional medication? I'm sure they are well enough informed....

Going back to the MMR, my personal belief is that a child of 1,2 or 3 years old has not yet built up a decent enough immune system to be able to accept the huge amounts of disease put into them during a vaccination. If that child has an underlying or dormant autoimmune disease such as Juvenile Arthritis, that vaccination will trigger it. It may be that yes, that disease was already lying dormant in that childs system, but it may never have needed to be triggered if that childs immune system was built up to a strong level with the right nutrition, not medication.

I know that there is no 'scientific based evidence' on this, but I also think there are reasons for that as I have mentioned above. We do know that in America, which has the highest rate of vaccinations in the youngest age, there are the most amount of autistic children. 1 in 88 children to be exact. Whereas in Norway, where they vaccinate in single vaccinations at older ages, they have the lowest rate of autism in children in the developed world. These statistics are enough for me and I don't need 'scientific based evidence' for that.

Parents who believe their children got autism through the MMR have reported things like, having a 4 year old child who talked and played and made eye contact, then had the MMR and within literally a week they stopped talking and playing and making any sort of eye contact.

To end, if you want to get your children vaccinated, how about thinking of going to a place that offers the single vaccinations and have them done a year or so apart so the immune system can process it? And perhaps it is worth thinking about doing it after you have spent sufficient time building up your childs immune system with things like infant probiotics and other nutritional goodness.

I think the main problem here is that the modern society is completely uneducated when it comes to healthcare. They believe what they are told to believe and that is it.

I know that this is a controversial subject, but I'd like to know what your thoughts are on it? Are you for vaccinations in one go? Do you think parents who don't give it to their children are bad parents? If so I'd like to know if you are educated in the health care system and if you have ever had a sick child and this is no judgement, I'd just like to know for myself. Or do you believe that your child got sick from the vaccinations? Please share your thoughts....

Wednesday, 6 March 2013

2 Weeks Later...

I told you I wouldn't just disappear! But I did need a couple of weeks after getting back to London to just get back to normal life.

And as I stare out of my window to the grey skies, bare trees and mundanely identical buildings in the development I live in, I am beginning to miss Tel Aviv. Not just for its blue skies and beaches but for its character. The constant buzz and great vibe, the character of the city and of each building - everything is alive. Here it feels as though people just live to work, in Israel people work to live. Despite all the troubles they have - war, economy etc - they love life and they show you this time and time again. The thought of going out on a weekday evening in London in winter is a difficult one. Its cold, its miserable, and most of us are miserable because of it! There is no such thing as 'let's go for a last minute coffee'...

When I'm out and about, or simply looking out my window, the country seems to be in a constant state of melancholy. It is a hard thing to explain but that is how it feels.

The sun did come out for a couple of days and it was as if the Mesiah had arrived in London!

Anyway, I personally refuse to live in a constant state of melancholy and am therefore trying my very hardest to stay happy and positive.

My joints have stayed pretty stable since the treatments, all except my jaw and left wrist which still seem to be a problem and I feel I could have done with another few treatments but time did not allow it.

I am however back to meditating every day, personal trainer twice a week, swimming once a week, homeopath, acupuncturist, osteopath and hand therapy to keep myself healthy.

This week particularly has been a bit of a shitty one in terms of hospitals because I was away for so long so everything seems to be catching up in one week. This week alone these are the appointments I have from Monday - Friday: hand therapy, moorfields eye hospital, osteopath, homeopathic hospital, dentist and GP appointment. I'll be happy to get this week out the way!

But I'm continuing to write my book and although I'm not sure if I'll managed to get it finished before the wedding which is in 3 months, I am certainly trying my hardest.

In general most days I feel good, I am just working towards getting this jaw pain out of me, and then I'll be perfect! But most of all, I'm working on remembering why I named my book 'My Enemy, My Friend.' I am constantly learning things from my illness and the more it goes on, the more wonderful people I meet and the more I change for the better. So I'm dedicating this post to my book, which helped me understand myself so much better, and has thankfully helped others too. If you'd like to buy a copy you can do so here

I'll try and keep you all up to date as much as possible with how I'm feeling and my progress, but for now, as always,

Love and light xx

Thursday, 21 February 2013

Day 25 - The Last Day! Goodbye TLV

Well it certainly has been a long and eventful month, filled with highs and lows and emotions on every level. But today was my last full day in Tel Aviv.

After yesterdays episode of not feeling well, we had to cancel our plans today which I was really annoyed about. We were supposed to go to meet the Rabbi who is marrying us and he lives in Jerusalem so we were going to take a trip to Jerusalem and have a walk about, go to the Kotel (Wailing Wall) and then go to meet the rabbi, but we had to cancel as I wasn't feeling well enough to endure a trip like that. He understood of course but it is a shame because it would have been nice to meet and go over all the wedding stuff. We are going to speak to him on Skype instead for the time being.

We took our time this morning and went to have coffee in the flea market, but by the time we were sitting there I was starting to get a headache again, so we made our way back and I got back into bed at midday. I decided to put a meditation CD on so that I was fully focused on the positive instead of thinking about being in pain, and I drifted off into a nice sleep for an hour. I woke up feeling better and because the weather was so gorgeous we went down to the beach for lunch and I tried to get as much Vitamin D in me as possible as I'm sure the next time my body will be seeing sun like that is next time I'm back here! Lord knows London is freezing at the moment!!

Then another spanner in the works; we were due to go out for dinner with friends but I ended up not feeling well again once we got back from lunch and all I wanted to do was stay in bed. The room we have in the hotel doesn't have a bath, only a shower, but the helpful girl at reception gave me a room with a bath to use so that I could relax in a bath and it was really needed. We spoke to our friends whom we had to cancel and they understood but more than anything I was pissed off that I had to cancel yet another arrangement and although I know it is all the after effects of the treatment, I wanted to enjoy my last day.

My stomach felt so weird that it took until 11pm for me to feel hungry and we eventually ventured out to eat pancakes, as that was the only thing I fancied. And that was my day!

So not a great last day and we leave the hotel at 1pm tomorrow but I always knew I wasn't here for a holiday, I was here to get better and aside from the facial pain which I am still putting down to reactions from the treatment, the rest of me is 100% better so I am happy.

I am really looking forward to getting back home to reality, to my dog, to be physically able to get back to the gym, to my family, to finishing my book and generally to just living! And of course looking forward to being back here in 3 and a half months to get married!!!

This will not be my last post, I will be updating you all on how I am feeling and how and when the reactions wear off. And of course how being back in cold London town affects me.

So for the time being, as usual, I wish you all....

Love and light xxx

Wednesday, 20 February 2013

Day 24 - From High To Low

Strange day today. I was on such a high, and still woke up feeling light and happy this morning from yesterdays treatment and the positivity it brought, but I had the faint signs of a headache above my right eye and on my right temple, where it usually comes. We got up and went for a walk, then I went to have my hair done which was lovely, and went to meet Daniel on the beach where he was sat having coffee. It was a beautiful day, although a bit windy on the beach, but nonetheless it was much better than England!

We came back to the room and the headache got worse, and before I knew it, it turned into one of the full blown crazy headaches which make me feel like my head is being screwed tighter and tighter into a vice, and the jaw was throbbing uncontrollably too. I tried to sleep so Daniel left me for a bit so I could sleep. I faintly fell asleep but woke up an hour later feeling even worse and Daniel came back. The headache and general facial pain got so unbearable that I couldn't even hold a cup of tea that Daniel had made me to try and help me feel better. I was lying in bed, propped up on two pillows literally unable to even keep my head up and I couldn't open my eyes from the pain in my head. I was lying with my mouth wide open trying to put as little pressure on the jaw as possible so I must have looked an absolute delight!

After four very difficult hours it finally started to pass. It went slowly from a 10/10 to a 9, to an 8 where I started to feel more human (we always measure my pain out of 10 to help us gauge it)to a 7. We were supposed to go out for dinner to a restaurant/bar with friends but I had told Daniel I just couldn't go. But by the time the pain got to 6 and I started to feel more normal, I thought it might be a good idea to go out and get myself out the room. I had a shower and got ready and we ended up going to a more relaxed restaurant just the two of us for an easy dinner and were back within two hours.

I know it is just the effects of the treatment and isn't part of the illness. Todays experience hasn't taken away my positivity. I'd just like to hope that I won't be going through that again tomorrow!

I'd also like to send lots of love and strength to Mandy and Michael whose puppy Laila (the one I was raving about on Saturday) passed away this morning. For an 11 week old puppy she went through so much and eventually lost her life to the Parvo virus which she ironically was supposed to get the vaccination for this week. She was such a beautiful, kind, good natured dog and I know Mandy & Michael are devastated as I would be. As a dog lover I can only imagine how hard this is for them and I am sending lots of love.

Have a better day tomorrow everyone.

Love and light xx