Times of Teams and Treatments

Already thinking about Christmas

I am laying here listening to the sound of a sleeping house. The occasional creak stretching its arms is comforting like throwing on an old cardigan. I am awake at this time due to more medication and very busy legs. My movements clash with the peace that envelopes me. It is at these times I reflect on recent goings on, what has passed and future plans yet to be completed.  As I creep around I take a peep at my lot, snoring softly, lost in dreams. Their brows are creaseless and the worries have fled for the hours of darkness. Seeing them so quiet reminds me of how their lives have changed and the feeling of responsibility crushes my chest. The impacts are physical, emotional, financial, time consuming and hard to understand. If I could I would take all their concerns and worries off them immediately but for now I leave them in the peaceful and safe duvet cocoons.

My buddy - the plasma machine

For those who don’t know I have had another extended stay on the wards of my local hospital. My management plan now requires me to visit the renal wards on a regular basis. Plasma Exchange Therapy will change my life. The treatment is extreme but the benefits could see me able to spend more time with my nearest and dearest. It does have an impact on me. For the first week I feel about 90 years old but gradually I feel stronger. It enables my body to rest by increasing the time between attacks. In two weeks I have gone from every 3 days to a 6 day gap… brilliant.

My medical team continue to be a constant superhuman team who pick me up and brush me down each time I stumble. The continuous appointments are relaxed and open. We face the battle together knowing that each treatment tried is setting the path that Boo may tread. We know that each moment of pain is worth it as it may lead to something much greater….. a better  life for  fellow sufferers and Boo if she ever follows me into this roller coaster life. With a rare disease you quickly become aware that the research into treatments and cures are very limited. It is not through conviction but due to the fact there are not enough people to try out the theories on or to build evidential material. I am currently the only person on one of my medications… to get it a medical paper needed to be published. The request was originally declined due to lack of evidence but was agreed on the second try. Another example of brilliant my medical team are…..they never give up J Mark and I accepted a long time ago that money into research does and should go into diseases that effect millions of people everyday, not HUVS that only effects 100 in the world. I have experienced the benefit of this and still have my mum by my side because of it. Something I am thankful of every day.

Below is an extract of a web page written by Diana Miron in August 2010 on the subject of rare diseases and the impact from the lack of research funding.

We have all heard about such serious diseases like HIV, diabetes, malaria, but what about the other diseases that may appear at some point in one’s life and that one may know nothing about? Are they less serious? Or are they just not given the attention that they are supposed to be given? There are many such diseases and the lack of time and interest into them, eventually leads to a more serious condition that is out of a person’s hands.

This is the case of a young girl, who was diagnosed with Gaucher’s disease when she was just five months old. What is this disease about? It is a condition that implies a fatty substance that accumulates in the cells and in other organs. It eventually leads to liver malfunctions, skeletal disorders, bone lesions, serious neurologic complications and as well the swelling of lymph nodes and distended abdomen, a brownish tint of the skin and anemia. Despite of these serious consequences and transformations that happen in your body, scientists do not grant this disease enough attention. It can affect both male and females.

The form of disease that Hannah is suffering from causes brain damage, eye movement and makes swallowing be rather difficult. About 1 in 100 people in the United States are carriers of this disease and despite of this fact, nothing is done to be able to be found any cure.

Hannah has been living with this disease for two year now and the chances of living with it are between two and twenty years. Anyhow, her mother is rather scared what may happen to her child at any moment and expresses her dissatisfaction that: “Unless you have a celebrity who has a personal interest in your disease or you have a ‘popular’ rare disease … there are no big foundations, large fundraisers, or even any interest in assistance,” says Hannah’s mother Carrie. “It’s so hard knowing that there is so little research out there for my daughter, and that because of this, we will likely lose her sooner rather than later.

It is estimated that around 250 million people worldwide suffer from such rare disease and those are in a total number of 6,500 diseases. In America, around 200,000 people are affected by these special and rare diseases. And around 8% of the rest of the people will become afflicted with one of these diseases in their lives

As far as the treatments concern, trying to treat one special disease is in fact a burden to the medical services as they actually do not know what to do in order that they do not harm the patient more. Moreover, it is harder for the families to live with such a person, as they just do not know what to do, to help him and to put a stop to that person’s pain.

You can find the whole article on http://www.metrolic.com/coping-with-rare-diseases-121275/

I feel that we are now at a time of hope and opportunity. The team have persevered and we have, only this week, decided on the way forward. It means I will be getting more plasma on a regular basis, every 10 weeks or so. We know it will interrupt our lives but it has to be better than my constant trips to A&E. I am becoming like a member of staff or family. Only yesterday Boo and Caz had a comical conversation with one of my paramedics, Colin, who nicks my homemade biscuits every time he can, much to Boo’s dismay,…… at the Remembrance Memorial Service.. not even at a medical establishment. This what I mean, the medical side and those in it have integrated themselves into our lives seamlessly….it feels like one big happy family….

So here we are again, thoughts turning to the end of the year, full of plans, lists and intentions. I am sitting here in a quiet house enjoying the tranquillity, like the calm before the storm. My thoughts have already returned to the cosy memories of smiles, twinkling lights, pretty dresses and expectations of a fabulous time. I have sampled candles that promise scents that evoke the memories of the past, filling the house with cinnamon, apple and winter frosts.  Philly and I have checked out the lights and decided the ones that we feel will do the job.

It won’t be long before the house is full of carols being rehearsed for the school concert and the incessant chattering about Santa’s lists and Christmas trees. It is hard to not get swept up early with all the snowy adverts set against emotive tunes. I have to admit the lead up from now is my favourite time of year. 2013 has been a year that has had its extremes. This time last year I was not totally sure that I would see this Christmas. It is difficult to put my thoughts into words. The uncertainty of what the future will bring, how Mark and the children will cope and the total feeling of responsibility for putting them all through the turmoil of an on going chronic illness. Like usual that have been truly inspiring. I watch my children and think that they juggle things that adults would struggle with. They could teach some of the people who have baled a thing or two…



Me and Tim at the Awards 2011



Once again I have been lucky enough to be invited to the awards ceremony again. So out will come the party dress and high heels especially for the occasion. I am so looking forward to it as I feel stronger than last year so have more confidence that I will make the event  J . For those involved it is a highlight in the calendar that always delivers. People spend weeks looking for the perfect dress, shoes and accessories. I, on the other hand recycle my favourites hoping that I look less like a toad than previous years. I am promised a spot of wheel chair dancing with friends and this time I WILL get to the photo booth, this is the third year of trying!!!!!  I promise to get some pictures.

Next time I post the festive season will be upon us. I am making a survival list as I type. I promise to share it with you and let you know how successful it was.

Until then, take care, have no regrets, live life to the full, CARPE DIEM and KTF xxxxx

           

Body Back in the Bumble Bee with High Hopes and Feeling Good….

Well, hello old friend hello....

I want to start by saying today is a good day…..there is no specific reason apart that I feel mentally in a fabulous place. I feel young at heart, happy, slender and actually attractive for the first time in years. It is purely a mental attitude because let’s be frank, I haven’t changed physically, lost stones of weight or had a body/face transplant. But I feel good…..

A huge change in my life recently was taking up driving again. The change in both my own and other people’s demeanor is amazing.  After cheekily waving my hand at a driver who let me go I realised why we had changed. For me it was because behind a wheel people cannot see you that you are ill or disabled, especially when driving a flash car like mine. They immediately treat you differently because they are unable to see that you are different. We all like to think we are accepting and that we live the word Diversity but our make up means we spot differences before our brain takes the direction we want it to take. My new confidence is contagious and I enjoy sweeping everyone up in it. Don’t get me wrong I still have my bad days but I try not to let them effect me too much.

I am also starting to look like the old Sarah. With my steroids being reduced my face and body are starting to return to their natural form. The effect of this must not be underestimated. I can now walk past a mirror and actually recognise the person looking back at me. “Hello Sarah, where the hell have you been? I have missed you”. High doses of steroids have the knack of drawing every bit of femininity out of a woman and when they are banished you welcome back the woman in you with a huge embrace. It is hard to understand but ask any woman who has been in my position and they will nod their head in agreement most vigorously.

My new motor is fabulous and I think it definitely suits my personality with the vibrant colour and cheeky ability to pull away from the lights…. For all you petrolheads out there, it is a Citroën DS3 Sport and heaven to drive. Even Boo is impressed, this is the girl who was still in mourning for the Mini….

Healthwise my life isn’t so perfect.  Unfortunately we have found out that my antibodies are increasing at the rate of doubling each month. This has a profound effect on me. I am much more tired than normal. The attacks have ramped up again and I am partying with my friends in green every 3 days. As usual I refuse to give in and continue as nothing is happening. I have been urgently referred for more Plasma Exchange Therapy. So once again I will be intimate with my machine Optimus Prime.  The PICC line is to be replaced with a portacath in my chest; no longer will I have to worry about offending people with the bung hanging from my arm and the need to clingfilm up my entire arm before showering will be a thing of the past ..Yippee!

We are now officially into Autumn and the newspapers are full of dire warnings of record breaking snowfall and plummeting temperatures. The A&E department is already showing signs of the forthcoming seasons. It is full to the brim with more and more patients trying to get in. I can’t say it enough…..our hospital s and their staff deserve medals….they are all pushed to the limits but still treat everyone with respect and patience. I honestly do not think I would be as sane as I am without them. Mark and my dad take it in turns to meet me up there. Sometimes Boo has to join them but we try not to keep dragging her in. All the consultants ask after her lol… it is like she is their little mascot. I am blessed with those who are always there for me and happy with those who are not. I always find it amazing that people are quick to judge us when they cannot possible comprehend how difficult life can be. Some are incensed I am happy and managing to still keep my head above water but as the saying goes “there is nowt as queer as folk”

good times

With all that said, I love this time of year. It promises so much. The fun events are still to come. Local shops already have the Halloween toys and sweets on display and posters promoting the best ever Guy Fawkes night with huge explosions of colour. I am already looking at recipes for pumpkin soup and catherine wheel  sausages with  gunpowder potatoes. I always wait with anticipation, as the nights draw in, for the need of lamplight, the smell of chimneys releasing their fire embers, slow cookers bubbling as you walk in from work and the coat pegs covered in multicoloured scarves and gloves. It reminds of the times past when my twin brother, Simon, and I used to make a guy out of old clothes and straw then spend the cold afternoons outside the corner shop asking for a penny for the guy. The buildup of excitement for November 5th was incredible when all the children used to wait impatiently for the single rocket to be placed into the milk bottle before it whooshed up into the cold night air. The bonfire with silver wrapped potatoes to accompany the sausages burning hot in our hands…for all of you of a certain age I defy you not to remember those times with warmth.

Looking forward times may get a little tougher but with the feeling of momentum at the moment I am confident that we will forge onwards and upwards. I am sure there will be days when it is best to give me a wide berth but fingers crossed those days will be few and far between.

My sister in crime

Thank you to all of those who stand by me..you know who you are…. The lows will be low but the highs will be incredibly high x

My next post will be dependent on my treatment and admissions but hopefully I will be in touch really soon…

So in short; I am happy, ill but looking forward to winter… J

Til then xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

The 1079 day learning curve….

The changing faces of me and my closest comrades in arms....

“From quiet houses and first beginnings,

out to the undiscovered ends,

there is nothing worth the wear of winning,

but laughter and the love of friends.”

-         Hilaire Belloc

Today’s date is 10^th September and the season is very similar to 3 years ago when I fell ill. The sun is bright in the sky giving a false claim to warmth and the nights full of stars and low temperatures. The same celebrations are taking place.

Two nights before I fell ill I spent a very enjoyable night with my family watching fireworks and a bonfire procession through the streets of Burgess Hill. I have attended every year since but watched from the glow of a fire pit in a garden rather than amongst the crowds. Watching the explosion of colours I am reminded that life can be very much like a firework display. We enter into things with great gusto and shine bright only too quickly our expectations can fall to the earth in darkness. This all sounds very dramatic and dismal but it is far from the truth. Whilst exploding we can fill the surrounding area with colour and brightness causing others to draw breath and ooh and ahh in wonder. This is how I view the last 3 years of my life.

I have accomplished things that I never thought I could and have found the directions I have taken were never on my life map before. Imagine a road that has the same view day in and day out. It is a good road but like the M1, straight, no change in view and very long. This was my old life and enjoyed it. I was motivated and happy with my life. Then BAM! The 23 September 2010 arrived and suddenly there was no road at all. I had no direction and was wondering around in circles without the help of a map or Satnav. This probably lasted a few months. It was not all bad as I was thinnest I had been in years and could actually fit into a size 10. Always a silver lining. Then with the help of my nearest and dearest I started to regain confidence and focused on the positives that I was finding as a result of having an incurable condition.

Have you heard of the saying ”like ships that pass in the night”? That seemed to be my life’s rule. I was always with my family and friends as well as colleagues but never really appreciated that it wasn’t quality time more of going through the process as if on auto pilot. I never took a moment to stand back, peruse the scene and digest what was happening in front of me. I now take time, take a mental snapshot and put them in mind’s memory scrapbook and take them out when I need reminding of what is important. From, laughing with Mark over really silly things to watching the children trying to catch the dogs in the snow. They normally involve smiling faces and filled hearts. Within the scrapbook there are one or two very poignant sad moments that have also shaped me into the person I am today.

Those of you who have followed this blog for the past 2 and a half years will know that it has been a bit of a roller coaster that has thrown in a few unexpected twists and turns when I have least expected it. A curveball was thrown to me only last week when complacency was thrown out of the window at high speed. An attack to rival all former attacks. After my initial surprise and concern I realised that I need to continue being on my toes. 

One of those twists was the loss of a dear friend. His passing definitely left a legacy within my little family and we know how fragile and precious life is. Even now I have to wave at the Brighton Eye and The View restaurant everytime we drive by. Our family’s very own personal tribute to someone who came into our lives and taken far too early. Through these moments captured in time I draw strength of character. When feeling down or wanting a desperately needed duvet day the letters KTF pop into mind to give me the kick up the bum I need. I even have them tattooed on my finger as a constant tribute and reminder.

Friends have come and gone and some re-entered my life. The strange thing with a long term illness is that longevity can result in a lack of understanding, Our family life and what we have to do can be difficult for even the closest of our friends and relatives. We do not expect people to understand or approve of all of our decisions and to be honest they haven’t. Acceptance is another problem .I remember going to a party about 18 months ago. I was dressed in my finery and thought that I looked ok for once. On my entrance with Mark pushing my chariot there was a silent collective gasp. It became apparent very quickly that the other guests had been told I was ok and that all was fine. I was shocked by the reaction. It was because others who could not accept what has happened had portrayed a picture that wasn’t entirely true. Another learning curve. As in the infamous statement “you can’t handle the truth”. This happens a lot. Mark and my parents have had to accept what has happened. Funny really as they are the most effected and could be forgiven for putting on rose tinted glasses.

So where am I three years on? Regarding HUVS, we may have at long last found a management plan that my make my life a little easier. There is no magic cure but the future is looking brighter. I am still a medical conundrum and have multiple attempts at treatment. I still balance between normality and emergency never knowing where I will fall during the day. The attacks seem to be strengthening but not as often so, one hand giveth whilst the other taketh away.  My body is battle scarred and tired but my spirit remains strong refusing to bend in the storms of Vasculitis.

Even though in a chair, and looking very different, I seem to have found confidence in my new skin. Maybe the idea that I am lucky to be here helps me push through barriers that would have once held me back.

And what of the future? My first priority are to my family and friends and always will be. The children have had to adjust with little support. With this in mind Jacob and I are in the process of setting up a support webpage for children with parents suffering from Vasculitis. A place they can chat to each other, gain support and understand they are not on their own. I feel great pride when I think that this is something that Jacob and I are doing together. He was in denial for a long time so this is huge step forward. I also want to continue with things I have started. My work regarding disability and inclusion is still very close to my heart and I am as motivated as the day I started. This blog is the public face of HUVs and I am really lucky that you read it. I will continue to post with helpful tips but I must confess that it helps me as much as others. A cathartic action that allows me to breathe and remain sane.

Finally, I want to leave this post with words of thanks to all those who have helped me, picked me up when I have fallen and forgiven me for the trying days.

I do have a wish, that you all grab everyday like it is your last and never put things off until tomorrow.  Tomorrow could be the day it all changes. Never look back with regret.  Live your lives by the code of CARPE DIEM.

I like this train of thought………….

Life isn’t about waiting for the storm to pass; it’s about learning to dance in the rain………….

3 Years in the Life of a Free Spirit

the first year in

It is almost 3 years since my life suddenly changed.  1,061 days to be exact. So much has happened during this time. Good, bad and sometimes even ugly.  Seasons have come and gone turning the landscape from brown to white to green then back to brown. People have entered and left my life. Sometimes with smiles other times with tears but all have had a massive impact on me during the past 36 months.

I sit now in the back of my house with my constant companions at my feet. The clouds are scurrying across the blue sky turning my surroundings into light and shade. The children are amusing themselves and being worryingly quiet. It is at moments like this that I know HUVs has changed me. The changes can be positive or negative depending who you are and how you view my situation. No longer do I rush around and charge at everything at 100 miles an hour. Don’t get me wrong, I still have a short patience time and even shorter temper but I have learnt to appreciate things and people around me.

I have seen those closest to me swing from joy to worry in a blink of an eye. I have been supported, loved, judged, taken out, taken in and made to feel special. There is nothing to compare when you see your children, faces at the window, palms flat against it cold surface watching you being taken away from them. This was their first experience of me with HUVS. How things have changed. Their worlds have been shaken upside down and they’ve landed in a strange and frightening place. Resilience won through and they have made me proud time and time again. They have behaved amazingly, better than some adults, held my hand reassuring me when it should have been me holding them tight and telling them that everything would be ok. I don’t blame people who criticize. It is not their fault; they cannot possibly understand the decisions we have to make. There are no bad feelings.

We never expected people to truly understand what we, as a family, go through. It has made us stronger. Strangely I know my children will be able to face anything.

The first year was hard in a strange new world where our boundaries had changed. Our lives were now in the hands of strangers. Ironically over the three years we saw those strangers more than our nearest and dearest. They have been our constant support in the frightening arena of life and death. My children have seen and heard things that I never wanted them to. It is easy to judge from afar and sometimes we had no choice.

During this time my soul mate has been there 100% of the way.  He has always been there to enclose me in a cocoon of security. Fighting my corner, in both medical and personal relationships. He always was my knight in shining armor but he has gone way beyond that. Lesser people have either not been there at all or walked away.

Humour has seen us through. My dad has been great. He has conquered his fear of needles, I am sure that the “good boy” stickers helped. Even when his eyes have shown concern he has joked with me and the Resus team. One of the best moments was when he theatrically swung back the p[partition curtain to reveal my grandmother in the next bed. It was like a surreal family reunion. You couldn’t make it up. I know it is difficult for Mark, as my husband, to see the drama unfold  but I cannot imagine what it must be like for a parent watching their child fight and having to face the worst nightmare a parent can have. Now imagine having to face that several times per week.

There was one moment that stands out and left me utterly speechless. It was last year when I was nominated and won an award. The entire room broke out chanting my name. It profoundly effected me. That amazing night sort of underlined the importance of the work that I was doing. I have always been driven but now my focus is on things that are worthwhile. This blog, for instance, has helped others and I know my professional experiences have shaped peoples thoughts and actions. It is hugely rewarding.

So here I am 3 years after entering a world of constant change. I am currently out of the office due to back breaks and other minor problems. Still itching to be back as quickly as I can. This time I am more patient and understand the need to rest and recuperate.

Time has slipped by very quickly this summer and soon the children will be searching sleepy eyed for their uniforms and school books. The end of summer feeling comes earlier every year even though we still have a few precious hot sunny days to come. We lament the end of the season as we view autumn through rose tinted glasses. For me this time of year is about reflection. What was, is and could have been. I remember all the good times, try to forget the hurt that sometimes has appeared and  visualize what has still yet to come.

I am very excited about the next year in my on-going fight against HUVs. My horizons are opening up and I am feeling good. I remain positive and know my family and friends will be there by my side no matter what happens.

The next 12 months will be continue to be a roller coaster and I am sure that I will get to next number of 200 visits to A&E  but it doesn’t matter. We will continue to celebrate the highs, forget the lows and not even acknowledge the mediocre.

Thank you to everyone who has buckled up for the ride with me. There are so many to mention but here are a few…..

Mark, Caz, Mum and Dad, Pauline, Ann-Marie, Jax, Tonia, Philly, La Gaga, Pip and not forgetting my wonderful off spring. There is one other person who I could never forget. He understood the whole plot and was always in the wings to jump in and support at any time of the day. That is my absolutely brilliant friend and sick buddy Mr. Johnson. KTF all the way.

Life is good people. Remember this as we roll down to the end of the summer. Grab your days and shake them by the scruff of the neck. Enjoy everyone of them like it is your last,. Love those around you, smile more often, hug your children like you never want to let go and look into the eyes of your soul mate so they know when you say you love them you mean every syllable.

I love my life and the people in it.

I am one lucky lady x

Bracing Myself for a Couple of Breaks In a New Era






Boo and Caitlin resting their dancing feet





It has been almost 2 months since my last post on the blog. You could accuse me of being tardy but let me explain…..

You know how life allows you to become comfortable and secure then it packs such an unexpected punch that you are literally on the floor wondering which direction the “Muhammad Ali” upper cut has come from. Well, that was me. We were in the glow of a brilliant meeting with the Prof in which he said we may have found a treatment that may reduce my visits to A&E. I say glow but actually mean bright dazzling light that cause you to put your hand to your brow to shield yourself. That was on the Tuesday, by the Saturday I had made all sorts of plans to change my situation. My life, both inside and outside of work, was brilliant and I was riding high on confidence and the thought of what was to come…..



On the fateful Saturday the sun was shining and Summer looked like she was going to show her hand at last. I was travelling on my little black scooter when it became grounded. I won’t go into details on my blog but due to the incident I hurt my back. There I was on the floor, my head in a drain, thinking “are you having a laugh?” Confident that I had only pulled a muscle I called Mark to come and pick me up out of the drain and take me home. How wrong can a girl be???

That night, after hobbling around home all day, I got stuck. And boy, do I mean stuck. It took gas and air and morphine just to get me off of my mattress. Muscle pull my bum!!! I had broken my back in two places. I am a tough old girl but never again will I diss back pain. As a result I am now is a full body brace that I have had to wear for the last 8 weeks in 30 degree heat….to cut a long story short it seems that the stupidly high dosages of steroids I have been taking over the past 3 years has at last caught up with me and now the Drs think I have steroid induced osteoporosis, still to be confirmed. Anything can now break my bones…great……



Philly and Me by the pool



Needing a pick me up my friend Philly and I decided to take the kids on a much needed break so we packed up Boo and her twins Caitlin and Kenny (Jake refused stating “ I’m too old duh”) and headed off to a caravan park 30 miles down the coast. We were blessed with Mediterranean weather, brilliantly behaved children and the same sense of humor which all made for a fabulous time away. It was a memory moment that lasted 5 days. Boo reverted back to a child. She has had to be so grown up the past 18 months. It was delightful watching her splash around in the pool. Others will never truly understand what she or Jake have been through or how Mark and I have had to make hard decisions where they are concerned.  She danced, swam and laughed for the entire time.  We now have a blonde bronzed Boo.



Jacob has become a worker and started a “summer job”. I think it has been a shock to his system but he had already learnt a lot, particularly about having to get up to go to work. We hear “I don’t like this” in the morning to which we reply “you’d better get used to it as you will be doing it for at least 50 years” …..he comes home smothered in motor oil and paint. He too is bronzed and looks older each time he re-enters the house after completing his hours. I am very proud of him. How he has overcome the things that have been thrown at him. Strange to think he was born with a condition when we look at him now. A brilliant creative kid who can do the most amazing impressions….

So we got back from our break last week to start the appointments all over again, I have not been allowed to work since the back break. The mini stroke didn’t help matters lol….but there were no lasting effects so all is good on that front.

These occurrences helped me reassess what was happening in my life. Things can change in a moment as destiny had kindly demonstrated and I wanted to have calm and clarity in my life. I no longer wanted to walk on egg shells to please others or appease people to keep the peace. I no longer wanted the baggage that was effecting me, So, I cut free. I can breathe J

I have made some decisions and one of them is to start driving again. I am so excited at the prospect of this and can’t wait until my car arrives so I can pretend to be a responsible adult. The other is to try and rediscover the old Sarah with her high heels and perfectly styled hair. The reduction in steroids has been difficult and often painful. Joint pain in the fingers and limbs can be frustrating. Tiredness can hit at the most inconvenient of times. I have perfected the look of interest when in fact I am fast asleep. One good thing is my toad like features are slowly diminishing and my cheek bones reappearing. Yay!!! Not there yet but on the road to a non swollen face.

out on the town with Philly and my brace...accessorising...it's how we roll....

I still swing between tears of pain and laughter, normally together at the same time but for the first time in 3 very long years I am turning the corner and grabbing my independence back…I appreciate all the help I have received and the times that I have been knocked back. All of it has shaped me into the person that I am now today.

As for the immediate future? More appointments, more treatment and plasma exchanges, more time with the children and Mark and most of all more “me time”.

I promise not leave it so long next time, hopefully the next couple of weeks will not be so full….what an earth will I post about ?

Until next time

Sarah x



Gracie through the Looking Glass with Heavy Clouds and Sparkles



The Changing Faces of Gracie-Lou



An unusual title I hear you say. I will explain….have you ever walked passed a mirror or window, done a double take and walked back for another look because you haven’t recognised the person in the reflection. It is only when you realise that there has been a trick of the eye. It is all ok, there looking back at you is the same person you were 30 seconds previously…..now rewind. ……you take another look and realise it is you but you don’t recognise yourself. You look different. Your face is a different shape, your thinner or fatter, you hold yourself in a different way and if you think you have changed what do others think…..

It sounds strange, why wouldn’t someone recognise their reflection but believe me it happens. I often walk past the big mirror in my lounge and need a couple of seconds to realise the stranger looking back at me is actually me.

At first I found this rather distressing then downright annoying. Where was Sarah? When did she decide to leave the building and replace her with this imposter? And why did she choose someone who had a round face and very rosy cheeks.

To add insult to injury all the ID photos for work and everyday security were taken before I changed. Constantly having to explain to security guards or officials that “yes, that is me” and “I know, don’t I look different” and “yes, I should ask for my money back”

I join in the joke and laugh, but inside I am frustrated. When I plan my wardrobe for the day my brain plays tricks on me and I visualise my attire on a thin body that is upright and in proportion. It is after a few moments I have to rethink and dress accordingly. I have always been very conscious of how I look and that still is the case.

I have given myself a “kick up the bum” checklist that I use when I feel down about the physical impacts of my condition and drug regime.

·         Don’t listen to other people’s comments

·         Concentrate the on the good changes

·         Dress for today

·         If mirrors upset you remove them from your surroundings

·         Explain to friends and family how you feel

·         Explain to others why you have changed

·         Spend 5 minutes a day reminding yourself of the good things you have in your life

I have decided to have a “grateful board” where I stick pictures and little nik naks of special times. You know the ones, when you think about them a smile independently reaches your face. They are the snapshots in time that make the fabric of your life and you who you are. My board will have memories of who I was before HUVs and how I am now. I need to start celebrating the person I have become. Only the other day whilst whisking our way home from the hospital Mark admitted that up until 3 years ago I was a quite a selfish person, in regards to doing things out of my daily plan. I never said “no” but would indicate that it was a bit of an inconvenience. I wasn’t even aware. These days I am more tolerant, understanding and emphatic. Though Rome wasn’t built in a day so there is still room for improvement.



My extremely cool plasma machine



This week I reached another milestone which was my 100^th admittance to the A&E dept in less than 12 months. Rather than face this with glum faces and concern the nurses and I had a countdown and celebrated the event in the style that only we can…Balloons made out of surgical gloves and cakes. It was a surreal evening with laughter and support in a sterile and, for others, frightening environment. So, I am back to 0 again and hope not to celebrate the 200^th visit anytime soon.

In the past two weeks I have also been on the wards having plasma exchange therapy. This means that I was plugged into a rather natty machine that transported my blood into the tubes next to me, took out my plasma, replaced it with new then gave me back my blood. It was rather strange watching your life source next to you. The only side effects was that I was cold, this reminded me of the old cowboy movies where one of the heroes was shot and he would say “I’m cold”. Well, now I know why?

 

We are still waiting to find out whether it has made any difference but I can’t say that I didn’t enjoy having my feet up for a few days, though the sound and atmospheric effects on the ward could sometimes leave a lot to be desired.

“The Hills” are well and fully integrated into daily life. The summer term is underway accompanied by the cold temperatures, gales and rain. A typical English spring/summer. It is funny to see the trees green when snuggled under a hat or scarf. Yesterday was full of dark brooding skylines and startling bright interludes which caused us to squint in surprise. I have to admit I love the really dark clouds when they nestle on the downs by my house. It reminds me of Thomas Hardy and his skylines. Of course when the sun suddenly appears the world sparkles from the droplets of rain that have settled on cobwebs and window panes. Snuggled on the sofa watching all of this unfold I, once again, thought of my grateful board as this was a memory moment.

Going forward my world will soon be dominated by football. Both the children play and Mark has been asked to help out. Boo wants to be assistant coach which means that I can have some PJ days with my feet up on the sofa, snuggling down with my girls, Roxy and Tika, and be allowed to let the time to slip leisurely by.

We have a constant stream of birthdays, parties, meetings, days out and general get togethers. I can’t believe that Mark and I will actually be celebrating our 17^th wedding anniversary. Where did that time go? Each morning I thank my lucky stars that I married Mark. He is my soul mate and though we have our bumps in the road we soon motor over them. Our marriage has been built on love, humour and the fact that we like, laugh and smile at the same things….even cars, watches and clothes. Like everything else, Mark and I face HUVs side by side, holding hands and supporting each other with the strength we muster each day. Without him I would have crumbled and fallen by now. Maybe I should say thank you more often.

So, with thoughts of sunnier days, al fresco eating and the smell of freshly cut grass we are waiting for the summer to appear, it is only a month to go before we start eating strawberries and cream whilst watching Wimbledon. As every year before 2013 we will be in our cagoules singing along with Cliff Richard, whilst the heavens open and rain thunders down on to the roof. I can’t wait………

Until next time my HUVs followers

Sarah x

Backs, Bruises and Bloody Mindedness

A new career????

The last post was a personal tribute to my friend Mark who I said goodbye to over a week ago. It was a beautiful, funny, moving, comical and human service with a lot of love and laughter. A union of Union Jacks under a blue sky. Chelsea cakes surrounded by friends and balloons. Memories, smiles, photos, warmth and a presence that touched everyone in the vicinity. Mr J would have loved his send off but knowing him I am pretty sure that he was probably there laughing alongside us.

The impact of losing a friend so early was an extra spark of independence and a need to prove that I was surviving. This led to a frantic and chaotic approach which included a ridiculous bag purchase and trying to assemble the black dream machine with my cousin Caroline. “POP” has a new place in mind. This was the thought that went through my brain as I headed face first towards the road outside my house. This is because I had quite literally “popped” my back….as I lay there moaning under the boot of the car, whilst sending Caroline back to child mode, I noticed my ridiculous bag purchase on the tarmac next to me…well that wasn’t got to stay there so my stubbornness took over and with the help of Jake, who was definitely the adult of the situation, managed to get into the house in time to call the paramedics….again. Two weeks later I am still on painkillers and wearing a brace…I will not be assembling the scooter in the future.

The inherit need to prove that I am “fine” has also led to so many bruises that I actually am starting to resemble a Dalmatian dog…so from apart my heart being bruised over the past month I now have limbs to match….I have always liked to accessorise. Ironically I have seen a lovely pair of black and white polka dot converse shoes that will go perfectly. Always thinking ahead J

On a serious note the bruising and back are actually down to steroid use. One of the many side effects is the thinning of bone, muscle and skin. This means that the slightest knock can shatter “honeycomb” bones, bruise muscle and tear skin. The initial thought was that I had fractured my vertebrae due to steroid overkill. I do look like I have done a few rounds with a cage fighter. The other side effect is the sun and I will come onto that later…..

Now, we all know that I am a bit of a control freak and this is caused by sheer bloody mindedness. When disabled or poorly you can fall into one of two groups…fight or flight…..I definitely have both of my feet in FIGHT!!! Though, I do know people who have fled to their duvets and not reappeared. There is no right or wrong but I would ask the question….how precious is life?

We have one and I think it is down to what you want to get out of the opportunities that come because let’s be honest most of them are created by us. I can’t miss looking out of a window at blue sky with the wisps and trails from the planes flying to destinations, that I wish I could still visit or rainy days with the wind bellowing around reminding us of its strengths, the dogs straining on their leads wanting to chase the leaves that fly by. I may not be able to join in but just watching the scenes unfold fill me with a pride of still being here ( I have to be honest, that I actually shed a tear typing that sentence) but that proves the desire I have to be able to do those things one again…it is very strong and with the support of my nearest and dearest I am sure that I will.

Blue sky equal sunshine and this means that I have to be very careful about the UV impact. I have to wear factor 50 everyday to ensure that I do not increase my risk of skin cancer so when it is sunny this is intensified and more determined action is required……and I do not mean the wonderful yashmak swimsuit Caroline sent me but more effective measures.

By being sensible means that you can still enjoy warmer months. There are numerous articles on the internet. They are there to assist you when you are reactive to sun or snow. Below is the one I found by Dr Poonam Sachdev from the Only My Health website.

What is a Sun Allergy?

A sun allergy or photosensitivity, in some people, is an allergic reaction caused due to exposure of skin to sunlight. The term ‘allergy’ denotes a hypersensitive response within the body to certain foreign substances known as allergens. In an allergic response, the immune system is activated causing it to form antibodies that try to destroy or neutralise the foreign antigens (the allergens).

In people with sun allergy, an allergic reaction occurs in response to exposure to sunlight. In a person with sun allergy, his or her body reacts to the natural changes in the skin that occur after exposure to the sun. Their immune system on exposure to sunlight begins to treat the skin as if it were something 'foreign' and tries to defend it. The exact cause and why this disorder happens in certain individuals and not others is not known.

The common symptoms of sun allergy include rash, tiny blisters or, in its extreme form, a type of skin eruption, such as hives or large blisters on the skin (not only on exposed areas, but under clothing too). The symptoms usually begin on areas that are exposed to sun, such as the back of the hands, the outside areas of the arms, lower legs and neck.

How to Manage It

Skin allergy is a not a common problem. There are many treatments for sun allergy, but the best treatment for this problem is avoiding exposure to sun light. The rays of the sun cause changes in the cells of the skin initiating an allergic response. The immune system then begins to treat the skin as if it were something 'foreign' and tries to defend it. Here are some tips for prevention if you have sun allergy or an increased sensitivity to the sun.

Protect against sun exposure: Prevention of exposure to sun is the best measure to prevent sun allergy. People with sun allergy need protection from sun exposure not just during summer or at the beach, but throughout the year. The time between 10 a.m. and 4 p.m. is the most hazardous time for the skin because that is when the sun shines the most in most parts of the world.

Some easy measures to protect against sun exposure include the following.

• Stay in shade: Prefer to stay in shade, especially between 10 a.m. and 4 p.m. (the time when the sun is brightest) and do not expose yourself to lots of sunlight suddenly. Experts say that many people develop symptoms of sun allergy during spring or summer when they suddenly increase their time in the sun. It is advisable to gradually increase the amount of sunlight exposure as this gives your skin cells time to adapt to sunlight.
• Wear protective clothing: Protect exposed skin by wearing long-sleeved clothes (full-sleeved tops or shirts and long pants). Do not wear clothes made of fabrics that are thin or have a loose weave as these allow the UV rays of the sun to pass through them into the skin. Dark coloured clothes probably give more protection than lighter colours. Clothes specifically designed to block the UV rays are available at certain sporting goods stores. Consider buying these clothes if you have bothersome sun allergy.
• Wear hat: Use a hat with a wide brim to protect the face, head, ears and neck. Hats made from tightly woven fabric, such as canvas offer better protection than straw hats with holes that let sunlight pass through.
• Use sunglasses: Prefer sunglasses that wrap around and block almost 100% of both UVA and UVB rays. These glasses are effective in protecting the delicate skin around your eyes from sun exposure.
• Use Sunscreen: The UVA and UVB rays of the sun can cause damage to your skin even after exposure for only a little time (as little as 15 minutes). The sunscreen acts by absorbing, reflecting, or scattering sunlight. The chemicals in sunscreen interact with the skin to protect it from UV rays. Use of sunscreen is advised before you go outside (even if for a short period of time). Apply the lotion on all parts of exposed skin. Use a sunscreen with sun protection factor (SPF) of at least 15 and preferably 30 or higher on exposed skin. The higher the number, the higher is the protection. It is advised to reapply sunscreen if you stay out in the sun for more than two hours after you swim or sweat.

By: Dr Poonam Sachdev

So, as you can see it is possible to be able to enjoy the golden rays but you have to prepare and follow rules.

I am hoping to get out in the garden especially as “the judge” is doing my fence allowing me to strive ahead with my latest project..the garden. I am keen to make a “Sarah Area” that I can relax in, enjoy the views over the valley and listen to the lawnmowers shaping the grass and smelling that wonderful fresh cut smell that can’t be replicated. Flowers, pots, shades, Al fresco eating and family time.

 All of this is wonderful, if I am there. Currently I am in the hospital every 1-3 days which is taking and enormous slice out of valuable time with Mark and children. Don’t get me wrong, I know I have to and why so try and make the best out of the situation. This is most definitely helped by those who join me. I am surprised that me, Mark, Jax, my Dad, Dr Dave, AnnMarie, Lucy, Pauline and Boo aren’t in the naughty corner. This is before I talk about the resus staff who are just as mischievous. From telling everyone that Boo is my granddaughter to playing with the new thermometer, a scanner that reads the temp from afar. Great fun being told, alive, alive, alive, dead, dead…..as they pulled the contraption away with the readings falling. Their humour helps me in the “room of beginnings and endings” which resus is by definition. The “boys”, Will and Justin, always greet me with a smile, rude comment and understanding. I expect to be invited to the staff party or at least get some blue scrubs. One of the funniest moments is when I was moved to a cubicle to have the curtains drawn back revealing my 95 year old grandmother “dah dah”. She was sitting in her bed stating that she didn’t need help whilst being very brave. Three generations, including my mum, were causing mayhem. Genetics run deep…all we needed was Boo to appear and it would have been practically a show…

The new game is to guess the shoes. Yes, my obsessive compulsion for footwear has now followed me through the big swing doors in to my second home. My shoes have drawn many comments recently and I actually feel the need to increase the expectation each time. The last comment was “you have Lady Gaga shoes on”. How on earth do I top that? Answers on a postcard please…..

 Due to the constant blue lights I have been tired and emotional. More than usual. This has led to me being less than a perfect wife, mother and friend. Not that I was before. I know that the medication has made me angry, aggressive and forgetful. Those who love me are forgiving and take no offence when things go slightly off kilter. They allow me to scream, cry and feel sorry for myself. My life is slowly slipping to a medical existence and I am not sure that I am ready to allow that to happen just yet. As I said before, quality is so important. So I am declaring war….war on the condition, the constant trips to my friends in blue and green and those who make me feel inferior because I am different. Difference is good and it can make you stronger. No longer will I concern myself with other peoples opinions of me, I won’t allow them to make me feel sad and lonely when surrounded by them. I can’t control the trips but can limit the time the children are impacted. As for the condition, well, I was drawn into battle 2 years ago and currently I am behind enemy lines, covert, obtaining intelligence to staunch the constant onslaught of rogue antibodies. I may not win today but I will have the ultimate victory.

 That’s about it and where I am currently….. Sarah is pulling up her socks, revaluating the current situation and thinking ahead to hazy, lazy afternoons in my area surrounded my sweet smelling plants, my two girls at my feet, a book in my hand only being discarded when I close my eyes and give in to the soft sleep that comes from the warm outdoors.

 Until next time, please take care, appreciate what you have, enjoy those around you and most importantly cherish the time you have with your nearest and dearest….

Sarah x