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| 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.
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| 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…
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| 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
