A Time Of Great Change

It has taken a good six weeks of tears and sadness to come to the point of balanced acceptance; that my life has changed forever. My journey began in September 2012 with the help of my twitter and facebook friends we began to put pressure on Dr Reilly regarding the health service cuts, I am a victim  of the cuts living in chronic nerve pain, a pain that was being fed with the strongest pain medication  on the market. I turned to my online friends and with your help I managed to keep going.

In early December my body began to fail under the pressure of fighting for my rights and eating pain-killers, it was all too much.  The multiple sclerosis ravaged may brain and left me a paraplegic. At first all my anger was directed at the government, I was grieving for the loss of who I was and until I had gone through the stages of grief, I could not begin to heal. I took the happy pills for a few weeks but this was a journey that required me to feel, I did not want to accept this I ‘never’ wanted to accept it I was comfortable  walking with a stick now I have my 3 wheel scoota! I wont lie and say I woke one morning and it was all wonderful, it is not and never will be. I have cried sat in silence for hours filled with regret for all the stuff I haven’t done I will never fully accept what has happened I am still trying to find balance.

I am getting stronger each day I have good friends and family around me and I will not give up the battle for those of us living in unnecessary pain to save money for the Germans! My life has value I had the time out I needed to take on the fight again, not just for myself but the thousands voiceless Irish left to rot at home alone. My physical ability may have changed but my passion to shout out against the injustice being doled out daily by the HSE is as strong as ever so watch this space.

Everything Changes

This time last year I was full of hope for the future, I was back in college doing a level 7 train the trainer. I had plans for a business I was going to work in the corporate and community sectors, I even designed a program called A Better Tomorrow the plan was to help people cope with stress and achieve their goals; life was looking good for me.

Early August was when the subtle changes began a little drag of the foot I never even noticed it was my GP who first mentioned it. Then Reilly made his vicious cuts to the health system. The pain infusions of lignocaine I depended on to keep me pain-free was no longer available every six weeks I was having to live with chronic nerve pain which meant I had no choice but to take the strongest painkillers available. I was living like a rabid animal wanting to cut off my arms and legs to stop the unrelenting burning pain, I was also fighting the HSE to treat me the stress was unreal, it was the stress that caused my relapse and robbed me of my physical abilities. I walked with a stick for the past eight years, I functioned in society I lived a near normal life; not anymore.

My relapse hit my brain stem and lower spine, I can’t walk anymore and my bladder has a mind of its own. I went into hospital last week for treatment and tests, late Tuesday afternoon my neurologist sat with me Steve and Keira had gone home so I was to receive this news alone. The damage to my brain stem and spinal cord is severe and you don’t recover from lesions in these areas! My brain had escaped without any new lesions but straight up I will never walk again no more than the few steps I can take with my frame, this is as good as it gets!

All my dreams are gone, the plan is to make me a little stronger to run the wheelchair, I will still have the pain that is for life so every month I will be fighting the system for treatment while trying to adjust to being a wheelchair user, I have to apply for disability for the first time in my life and my chances of ever working again are almost nil.

This didn’t have to happen if I had not had to fight for treatment for my pain I wouldn’t have had the stress and the painkillers causing weakness to my body to the point the ms was free to attack at will. I am still in pain and taking tablets like smarties. I will be having my lignocaine on Wednesday two months after it was due! Thank you Dr Reilly your so called attempts to save money have left me having to rebuild my physical and emotional life, the stupidity of your decision will end up costing many thousands more than my €34 lignocane infusion as I will now be using services for the first time and attending more appointments than ever before. Nice one James!

Time to Accept Change Enter Life Number 4

After my admission into hospital on Monday morning I spent the day being subjected to long overdue tests, I sort of knew the official outcome well in advance but what I think and the Neuro confirms are two completely different things.

Late on Tuesday afternoon my Neurologist and his latest trainee arrived to deliver the verdict, my most recent MRI is not good and along with the two brain stem lesions I have a couple more in my lower spine. The good news is my brain is in very good nick a few old lesions that play about with my eyes from time to time but nothing to worry about.

This time the is no promise of a fix but a plan to build up my strength, I need to reduce my stress levels not something I see happening anytime soon, not unless the Government walks and society learns to care. I have worked all my life and for the first time I am about to apply for disability I have a right to be treated with dignity and respect as this process will be far from easy for me there is an element of failure of becoming what I have always hoped I would never be ‘a person with a disability’ people change, job opportunities are less, you get talked about and over in you presence!

I am now officially disabled and a wheelchair user but I am no less intelligent than I was before this relapse I have a voice and let no one ever try and shut me up. Once my treatment is over I plan to get my head down next week and write my long awaited trilogy of books, my daughter wants to design the cover so I may actually self publish even though I have a publisher interested we all know kindle is the way forward.

So I had so bad news and my street dancing days are over but I have a cool little scooter and cant wait to become the woman in the purple coat with the yellow hat. I always have been a socialist activist and plan to put more effort into this area of my life once i am well enough. I received the appointment for my lignocaine infusion on March 13th so once I get over the iv steroids I should be pain free for a month at least and hoping to get hubby to take me to Dublin for the march. I am still going to the EU with the 1 Plus 100 petition for the patients charter to be ratified, so don’t forget those email I desperately need to make it happen.

Right to Life After Birth

Last night I cried myself to sleep I was guilty for feeling sorry for myself when so many Jack & Jill Children need help. You see I knew one of their children and in the short time I spent in his company I fell in love with him.
Jonathan Irwin is one of life’s living Angels, the families who his foundation helps feel blessed to belong to this special group.

*I have changed names and places I am sure you will understand why.

I went to meet Jake’s family near Sligo around May 04 the plan was to spend a day with the family divided into two half days so I didn’t get in the way, in the first five minutes I lost my heart to Jake and even now I feel love for this little boy who brought nothing but happiness to those he touched in his short life. I held Jake kissed him repeatedly each one rewarded with the most beautiful of smiles, handing him over for a nap was difficult as I was happy to allow him sleep in my arms. I was there on a job and mum was ready to speak so I laid him in the arms of his nurse and stole one more kiss.

Jakie was premature and deprived of oxygen at birth and at three weeks old he had a brain haemorrhage that left him quadriplegic and using a ventilator.  Mum explained if Jake had stayed in hospital he would have died from infection ‘after all where else do you find every bacteria and virus flying about only in a hospital, most patients can cope but my little man needed to be home where we could control exposure to the infections’ Jake’s room had an air purifier to keep the room as bug free as possible and a play area was set up with lights in his comfort corner.

I was nothing more than an observer in a house of joy all made possible by the Jack & Jill foundation Little Jake died peacefully at home a few weeks later and at Mum’s request the article was never printed although I did send her the photos I took with her permission. Even in her grief Mum was so grateful that her beautiful darling son came home and died with his parents and siblings around him.

When Jonathan Irwin spoke about the disrespectful way Minister Reilly treated him I could feel the tension in my brain rise, temper turned to tears. The big abortion debate is about to kick off with each side spending millions trying to convince people to join their side of the argument! People already know what the think about the abortion debate we are a well-educated country if nothing else so why not save the money give it to Jack & Jill help those babies born with life limiting illness go home to their families for as long as their short lives allow.

Lets not fight about what may or may not be lets care for the children already with us

Dr James Reilly has shown his only interest in our healthcare is to cut back save money and privatize the lot I read the news article some months back about his so called meeting with Jonathan Irwin I was angry this but hearing the story on the Saturday Night Show proved how little this Health Minister cares about his clients. People please stand up do something remember the old saying ‘there but for the grace of god go I’ I was struck down with MS over a weekend and life changed forever. I have been filthy rich and dreadfully unhappy, then I met Steve I was the happiest I have ever been in my entire life I even had in my arms the miracle child; enter MS the destroyer of my beautiful life in any given minute it could be you!

1 Plus 100 Petition For Better Healthcare For All Citizens

So here we are in modern-day Ireland a place where people must wait four years for a hip replacement or a child waits months at a time for follow-up for his eczema; modern Ireland with third world health service on the verge of privatization. The behavior of the HSE is akin to a company being run into the ground in order that it gets sold off on the cheap, so where is the benefit who wins? not the patient that’s for sure.

In the past seven months I have spent five in chronic pain my complaint to the HSE was given the preformatted written response with my details added to complete the appearance that an actual investigation took place. Before this bloody mess began I walked with the aid of a cane but the stress of living on the edge has caused a relapse which has left me disabled. I now have two new bright lesions on my brain stem and for the first time ever I have been put of medication for depression, I keep asking myself how can a health’CARE’ system treat service users so badly that we end up having to compensate for their inability to meet the needs of patients by filling our bodies with medications, while we wait like good little pixies for them to fit us in?

I for one have had enough I am fighting back and demanding my right to life, I don’t expect a perfect life after all I have a progressive disease but right now I am living a tortuous life. Often in films we see prisoners being tortured by having electric wires attached to their bodies, I am a prisoner in my home and every time my brain misfires I receive electric shocks so intense I can hardly breathe.

The Irish Government are not interested in the suffering of their citizens they are however very concerned with their image in Europe.  If I can achieve the 1 plus 100 petition and send the case to the EU petitions committee we can achieve the publicity we need to tell the world what is really happening in this country. I am prepared to front the case and if anyone else out there is unhappy with treatment you too can submit to my petition, if your interested please email me jenniferbanks.media@gmail.com we can help write-up your complaint and prepare it for submission.

We need to stand up for ourselves our voices must be heard, if we continue to live as submissive citizens then we will have only ourselves to blame once the HSE is privatized in 2016; no insurance no treatment.

Small Claims application against Dr Reilly

I am making a claim against the Minister for Health Dr Reilly under non fatal offences against the person act, because of the actions and inaction’s of the Minister his subordinates and ancillaries My health mental well-being and security of life and other ancillary rights which are laid down under eu laws and treaties, such as the EU convention on human rights, Irish laws and protocols such as the Patients Charter.
The basis of my case is due to cutbacks in the department of health I lived in a state of intolerable cruelty due to chronic nerve pain. For a period of eight weeks I was unable to leave my bed let alone my home. I made every attempt to communicate my situation to the minister using telephone, email and postal service. As the minister for Health it is his duty to not only serve his office but also the patients who rely on basic treatment in order to function in society, I am one in thousands of others who have been directly effected by the cuts to the health service as a direct result of the actions of Dr Reilly.
The patients charter gives me the right to compensation when my suffering has been caused by the actions of the Department of Health
12-Right to Personalised Treatment
Each individual has the right to diagnostic or therapeutic programmes tailored as much as possible to his or her personal needs.
The health services must guarantee, to this end, flexible programmes, oriented as much as possible to the individual, making sure that the criteria of economic sustainability does not prevail over the right to health care.
14-Right to Compensation
Each individual has the right to receive sufficient compensation within a reasonably short time whenever he or she has suffered physical or moral and psychological harm caused by a health service treatment or lack thereof.

Shame In The Public Domain Is My Only Weapon

In September last year I wrote out my funeral plan, I was so convinced I was about to die I wanted to make it as uncomplicated as possible for my family. I don’t believe in God only on spirit, love and kindness these are the pillars I live my life by.  I was sure my body already failing by my progressing ms was about to give up the fight; I laid down my plans.

During the four months I was in bed six out of every seven days I was trying to cope with the unrelenting nerve pain, a pain so intense the most of obscene words can not describe how it feels.   The same thought kept running through my head asking the same question ‘WHY’ my infusion is not expensive I don’t demand much from the health service even my disability scooter I bought myself? I do my own pyhsio in fact I have not accessed any services for years, they thought me what to do to keep my legs moving and I do it end of.

There I was and am again in desperate need of a little assistance but in order to save a few euro for the next management junket; I was and still am denied! I have few options open to me I am only one woman, I don’t have any big organisation behind me offering support.  I learned years ago the ms society can’t do much not when you’re criticizing the HSE who fund them! My online friends have kept me sane during this fiasco when I can’t sleep or feel I have no fight left these amazing people across the country give me the will to keep going.

What about those who don’t have the support? What about the families who can’t fight the system? I have always said I am only one in thousands, you just happen to hear my voice.  Every time I turn on the news I see our great leaders prancing about Europe with plastic smiles and expensive suits while Irish society is dying! Suicide, self harm, domestic violence and the use of drugs and alcohol are all on the rise, I just heard a body was found on the beach down the road here, is this another tortured soul who couldn’t take it anymore?

The government don’t care and there is little recourse for people like me, my last two treatments were only administered because of the involvement of Pearse Doherty and Mary Lou McDonald, they took my case to the dail and leaders questions; I received an appointment two days later! I know our great leaders hate bad publicity for fear it might get back to their friends in Europe; so here goes.   I am taking a small claim against Reilly for non fatal offences against the person, in order that they can’t try to void my case by sending a job lot of appointments for my lidocaine infusions; I am limiting my case to the four months last year when I existed in a state of intolerable pain and suffering, the same state I am in again.

I am going to do this in the most public way possible, I want Dr Reilly to know how I live and how I am effected by his cutbacks; I want him to look me in the eye and explain why?   I do deserve to live a life without pain? In order to bring as much attention to this case as possible I will need the support of my online friends especially those in the media I want Europe to hear my story and know that there are thousands of me living a tortuous life so we can save a few euro.

Things at the health service are going to get worse, much worse before they get better.  We all know perfection is only a dream but at the very least we should act in a humane manner and let no one forget it could be them tomorrow.

Life Or Death Dilemma -What Would You Do

Every day there is some new research program into curing Multiple Sclerosis, some have been successful over the years in controlling symptoms or progression of the disease; the cure still eludes us.  Recently a friend in the USA with ms alerted me to a research program which is proving to be very successful using ‘Stem Cell Neutral’, a form of stem cell which is not fully developed and when transplanted directly into the brain/spinal cord of a person with ms it gets to work, elevating the disease symptoms by repairing the damage to the nerves as well as renewing brain cells to heal lesions; it is quite possible this is the cure millions of us desperately need.

Reading the article my friend sent, I began to feel hope that maybe the time was here the time I long for almost daily; has this small research project found the cure? My excitement was short-lived as I read on for there was the line that I knew would ensure this research would never make it into the treatment centers around the world, you see stem cells in order to be neutral have to be collected from a fetus of less than 16 weeks; the cells are harvested from aborted tissue.

As Ireland embarks on what will prove to be an emotive debate on abortion there are millions of me’s out there who could be cured by the harvested cells of an aborted fetus which lets be honest will only be incinerated anyway. If abortion is introduced in Ireland can any of you see the researchers getting a licence to run trials? We could have the cure for so many diseases and I for one believe it would honor the existence of the aborted fetus if the cells go on to give life to others.

I am laying here in pain writing this blog hoping that my disease allows me to live long enough to meet a grandchild someday, Keira is only fifteen but I have always lived with goals after achieving my last I came up with the grandchild clause. I don’t want to see any child aborted as personally it is never a choice I would make, I don’t believe I have a right to try to enforce my views on others.

I thought most of last night what would I do if I was offered a stem cell neutral transplant? My heart would forever grieve for the child that never stood a chance but looking at my almost grown daughter I believed I would accept the treatment, my work here was far from over. Guilt quickly set in within the dept’s of my heart, I wanted more children in my life, before Keira was born I gave birth to a baby at 19.5 weeks I saw how perfect she was all that was missing from this perfect little human was body fat. I honestly believe I will never have to deal with the do I don’t I question, if we can’t agree on present legislation then medical research hasn’t a hope.

The research I read about is taking place under a veil of secrecy I can’t even link the article for fear it may lead back to my friend, she obtained it through a source receiving treatment, in a country where abortions are carried out every single day this research remains secret for fear the researchers lives would be at risk! Ireland has a very long way to go before allowing aborted fetus be used to find cures for life limiting diseases!

I am interested in what you think? what would you do if faced with such a dilemma? Do you feel it would be acceptable for research projects to use aborted fetus to find cures for other diseases?

Today I don’t think I could accept the transplant if offered but in 5 years time I may feel differently it depends how fast I progress from here!

A Little Explanation

I know at times I may seem like I do nothing but moan about my health, to be honest I only began the conversation to raise awareness. Whatever I was going through I knew that there were people out there who could not be heard, I am one of the lucky ones I can be treated; unless the health cuts decreed otherwise.

Living in pain is not easy for anyone a fact I am fully aware of, imagine how much more difficult it becomes when you know there is a cheap effective treatment that will take the pain away but you can’t have it?

Multiple Sclerosis feeds off stress, a fact recognized by all medical professionals. Between early August and October 30th, I was living with a constant burning pain that was not relived fully; regardless of the amount of medication I took. I turned to social media for help and support, plans were made, letters written and eventually the pressure we put on the HSE paid off, I received the treatment I needed.

The sad fact is by the time I made it to the day ward on October 30th, I was in full relapse brought on I believe by the stress I was under while fighting the HSE, my immune system was frantically attacking my brain the result is, I am now quite disabled and require the use of a wheelchair; before the relapse I was able to walk with the aid of a stick.  I have a long road ahead of me to get back to the way I was before, as I am getting older recovery from relapse becomes more difficult and may never come my way.

unfortunately my immune system rejected the lidnocane and a treatment that would normally last 6 to 8 weeks began wearing off in two. The pain returns in stages it can take up to a week before it really kicks in and until now, I was able to cope using my tens machine and meditation; as of yesterday I am back on the Oxy.

I wanted to give you all a proper explanation as to why I am seeking your help again and so soon after being treated. The pain clinic say I will not get an appointment until the end of January for a top up of lidnocane, considering my body has not recovered fully from the last round of Oxy, I am terrified the end result of this game the HSE are playing with my life; could be more than my broken body can endure.

I know it is easy to become bored of a person who appears to moan relentlessly, I assure this is not who I am. I prefer not to focus on what I have and very often when people ask why I have a stick? I say I have a bad knee, it is not an untruth but means I don’t have to receive the sympathy well-meaning strangers feel compelled to bestow on the sick and disabled.

I want to function, I am a mum and a wife, I love to work and have done so all of my life; I want to be part of life not be left in a corner and forgotten. I have a voice and with your amazing support it was heard, I am very conscious that for every voice heard thousands never are. I hate having to embark on this journey once more and I would rather be talking about you than myself. Please bare with me on this campaign people if we remain silent our Government will strip us of our dignity without a pause for thought. I have the support of my Pain clinic to make the noise they are desperate for the resources that allow them to function, in truth the whole of our health service is being dismantled piece by piece, without it society will not function.

I can’t go Through the Pain Again

Less than a month after receiving my Lidnocane infusion it is wearing off fast, this has happened before, normally I get 6 to 8 weeks relief it seems to be less effective when I am in relapse.  After eight weeks in chronic pain and out of my mind on medication not only can my body not take anymore; I don’t believe my sanity can either.

I am all out of fight and unable to go through another round of pleading for help while living in a haze of Oxy. I realise I was lucky to get treated when I did, I know it was the support of my online friends and Sinn Fein who made it happen but this is a situation that should never have occurred in the first place.

As a direct result of the stress I suffered I have relapsed to the point that getting up and having a shower is akin to climbing mount Everest, others living with Multiple Sclerosis will understand exactly what I mean. My legs wont carry me and my energy level is 0, I am unable to have IV steroids to try to force a recovery as the Oxy has left my liver poisoned; my eyes are yellow and my body needs a good three months rest from medication to recover fully.

The simple solution is to have a top up infusion it has been done before don’t, allow the pain to return and force me back on the medication that is making me ill. I can’t understand why logic seems lost in the HSE? Whatever cost is incurred by infusing the Lidnocane now would avoid any costs in treating me later when my liver is failing from medication overload.

I am begging not to have to fight for treatment again, my pain clinic say there is no chance of being seen before January but I know by next week I will be using the Oxy to control my pain. There is a pattern to its return one that has begun already, in the past I would call my pain clinic and they would book an appointment; I may have a few weeks wait but I could cope.

I am broken right now both physically and mentally, I have been fighting for thirteen years.  I kept working when my doctors wanted me to give up, I have avoided addiction by always looking for the alternative treatment for my pain but the strength I had all this time is gone stolen by a system that is no longer about patient health, it’s all budgets and savings; well I need saving right now I have a family that need me and a world I contribute to. I dont want sympathy or praise I want to live as best I can for the time I have, it is in the power of the HSE to make this happen for me, I am not proud and will beg on my knees if you want but I should not have to.