iamresilient

Wake up not knowing that your life will take an unexpected course is out of your plans especially when it comes to something as precious as health and thus a chronic condition.
7 and a half years ago this happened to me, just one day I realized that for weeks the burning and stinging on my body pain, fatigue, inattention, inability to do my normal tasks like carrying my bag or walk quickly forced me to stop or feel an immense sadness, complete change in my sleeping pattern accompanied me for no reason and could not do anything about, nothing, everything I tried did not work.

During this time the main task was to obtain a reliable diagnosis, the biggest ordeal was due to the sense of insecurity that is generated when you have medical answers confused, discouraged, take you to the forced resignation and hopelessness of living to a horizon where seem to stop being “someone” to be “something” and then your life with everything you had predicted disappeared completely.

Mexican, 29 years sports psychologist, studying the first year of the master’s degree in education and knowledge management, working at the university and consultancy with athletes who had their dreams and objectives set at the highest performance standards, coordinating academic programs and being board member of the Mexican Society of Sport Psychology and Physical Activity … Diagnosis: fibromyalgia, post traumatic stress disorder, ankylosing spondylitis, chronic fatigue syndrome and / or some other condition that without form and name anyway went against my life, my dreams, my dignity, economy and anything that had wanted years ago; So one of the hardest things to experience for, not being able to name your illness (because I wasn’t sure of my diagnosis) and therefore feel completely lost.

Those with someone close who has this or these diagnoses may well understand that life changes completely, which is a shock that collapses, which takes you to schemes limiting thought because of social stigmas, little formal study of these invisible diseases and therefore lack of knowledge of many specialists that provide only medical prescriptions and not understanding and support, lack of resources for the management of people with chronic diseases in a health system collapsed, constant and terrible sense of fear to anyone future decisions to be taken even if it is if the day after you’ll get out of your bed to meet your daily work which leads to a total uncertainty of what will come in your life …
My God, you have 29 years !!! These are diseases of adults, and you don’t look sick except because you have a face of fatigue that is not relieved by anything you did or not know how you got to where you are now because you was driving like in automatic pilot course making you feel completely lost … surely you’re just making this up because you do not want to do what they ask and care, it is better that you stay quiet and say nothing people around you think they just want to avoid, in that condition is impossible date a meeting or safe appointment because you never know if you’ll have enough energy to go to it; doctors predict the inability to maintain a positive relationship with love and care and if you have a wife with fibromyalgia, no man holds live with someone like that, much less you think you can take care of the demands that come with having children …
For me to continue with this story is to refer to the possibility to decide, to discern and then act; be who I am today and collaborate with 11 Health and Technologies Inc. is not by chance or my good fortune, has been a constant in the ongoing work myself, decision making, openness to possibilities and a huge stubborness in the conviction of a mission of life where the gifts given are placed in favor to others (the “diagnosis” didn’t determine my life); as the Jesuits taught me “to be a woman for others” and to turn to the use of technology to improve the quality of life and the performance of those who use it.

And then, why would a sports psychologist works for a company that is disruptive in the healthcare market and technology?
One of those many days where crises from the disease took hold of me had to accompany one of the athletes achieve perhaps the highest of the sporting objectives that had been proposed so far, the option was to leave and look forward me in bed or take aside what happened to myself and work together for a good experience. That decision definitively marked the next course, there was a personal commitment to get me out ahead and learn everything for me it would also favor other similar living conditions or perhaps with less support with which I had; was well as walking search found a tweet that led me to participate in a summit experience for me, the most disruptive conference, most renowned and prestigious health and technology where as latin woman I was able to attend, they opened the door for me: Stanford MedicineX where I had the first contact with Michael Seres founder of 11 Health, definitely was so inspiring history and everything he had made his own way to face his life inspired me completely.

Psychology science currently has major challenges and one of them is global health where the physical and emotional well-being are in the top because chronic conditions reach limits not previously thought and threaten global welfare.

In the spectrum of care as a sports psychologist an important task is the generation of programs on healthy lifestyles for large populations, changing negative behaviors that affect this objective, as well as intervention to promote adherence of users to them and the longest fully effective process: education.
Personally I am convinced of the great power it generates in chronic patients using technology to meet the health needs (used on my own person) and therefore the union of this with handling psychology as well as education. My experience as a patient in search of options to move forward and the others with the same condition today lead me to participate in a place that was made by a patient, where patients collaborate together knowing the vision of helping others in the same condition.

The “Everyone Included ™” model designed by Stanford MedicineX is the backbone of my task in 11 Health and Technologies LLC, where patients, doctors, nurses, support system, pharmacists, specialists and all the stakeholders who are involved in health universe participates and has voice recognition to their ideas and knowledge as the phenomenon of co-creation invites to generate effective solutions to the real needs of end users; in this case are patients who are worthy to have positive experiences to their reality .
The combination of science with technology is my ally in this experience of being patient-psychologist-innovative co-creator because it will definitely be the most challenging task I’ve had so far in my career.

It’s great to know that “listen, think, discuss, apply knowledge, breaking paradigms, create new, re invent” is the day to day of this stay in 11 Health and I am confident that the collaborative work with this new family allows to create effective solutions for all patients who rely on us.
“It’s magical to know that one day in a beautiful place can combine everything that you are, what you know and what you have to work for others … I love this mission”

Sarah Squire Embraces Life with a Stoma

I had colostomy surgery in 2007, aged 34 due to a rectovaginal fistula. Colostomies were for old people, not for a young(ish) mum with a full time job. How would I go to work? Would I smell? Would people be able to tell? Would I every wear jeans again? Can I go on holiday? So many questions but also an absolute terror.

I knew I needed the stoma as the fistula symptoms were horrendous – a connection between rectum and vagina meant I was passing stool uncontrollably the wrong way and it was completely mortifying. But I still wasn’t sure I could cope with a colostomy and also live a normal life.

My brilliant stoma nurse Simon managed to calm me down and explain that it really wasn’t the end of life as I knew it, and when he said “Sarah, children do this” it was a turning point for me. I had to get a grip and get on with it. I still didn’t like it and the early days were a struggle – psychologically as much as physically and although it felt like a long road I found great support, initially from the Ostomyland forum online and then also the Colostomy Association (CA). I went back to work full time, began managing my stoma by colostomy irrigation and you know what, life was OK. I didn’t smell, nobody could tell I had a stoma, I could wear jeans and we had an amazing family holiday in Florida a few months post op.

I began volunteering with CA and the more I did the more I loved it. I am now a Trustee and heavily involved in many areas of the charity. I absolutely love it and have met so many friends for life along the way.

As for the fistula, I had seven repairs in total and although the final one was a success, the multiple surgeries had damaged my sphincter muscle. Reversal would lead to incontinence so the stoma is staying. I am happy with my lot as there is no point in dwelling on what could’ve been and although I will never love my stoma, in a funny way I am grateful as it has indirectly resulted in a new lease of life for me in my work with CA. Life with a stoma is great.

My second Blog about life with and without a stoma

Some six months have passed since I last wrote up a blog.

It’s been a busy time and I am delighted to say that in October 2015 I got an all clear CT scan. So what next I wondered?  I was quite used to the colostomy and all involved with maintaining the stoma. So I wasn’t in any hurry to take the next step.

In fact when I saw my surgeon in November I was quite casual about it all. “If you cannot reverse “I said “that is fine I can live with this situation” But he gave me good advice as to why it should be reversed, if it can, mainly to do with my age.

At seventy five I may well get ill with something completely unrelated, like a fall, or a stroke, or God help me, dementia. In that event I would not be able to look after the stoma myself and would have to immediately consider a Care Home.

The date for the reversal operation was set for after Christmas. My surgeon was looking, hopefully, to the second week of January 2016. In the meantime I was to have a series of dilations to the bowel under sedation. The colon had narrowed at the point where the join had been made after a large section of bowel had been removed. It was not uncommon for this to happen; it is mostly due to scar tissue.

So another set of appointments, another uncomfortable procedure and they managed to stretch the colon from 9cm to 18cm But would it hold was the next anxiety, well for me at least!  The surgeon initially wanted to get to 20cm but he felt all would work again as the scar tissue would sort its self once the bowel was acting naturally again.

I was ready for the 29th January as the Theatre admission date. All tests had been done. A couple of days at outpatients for, blood tests, ECG, s etc. In fact I just got into the car and said ‘Hospital’ and it went under its own steam!! For nearly three years we had not been to many other places.

On the day before the operation the phone rang. Guess what? Operation cancelled; reason given lack of beds. I was annoyed and for the first time I felt that this was different. You see I wasn’t a cancer patient anymore, which is wonderful of course don’t get me wrong. All the treatment I had had over the last three years had gone like clockwork and always with a certain background of urgency. Now I was in the mainstream of surgical patients.

After many phone calls to and fro it was plain to see that they wanted to put me with another surgical team. I stuck out for the man who had brought me this far.  I gathered later that he was furious and personally set a new date for the op on the 26th Feb 2016. This was an odd day as it was my 75th birthday!!! But hey I’ve had 74 birthdays already and you know what; they are all very much the same. So led by the Anaesthetist, the entire theatre staff sang” Happy Birthday” as she applied the needle and off to sleep I went.

It is worth mentioning at this point that I had nearly cancelled my Colostomy bags in January, thinking I would not need them ever again! Although we are constantly advised to always have some spares, I certainly did not have a month’s supply. This time I only contacted the provider after the op. One never knows!

The stoma reversal has been a success as far as its main objective was concerned. This is a great relief to me and my surgeon, as blockages can occur.  I am now retraining my brain not to think every time I break wind I will need to run to the loo. But one has to err on the side of caution sometimes!  The bowel system will, I am reliably informed, start to settle into a pattern of normal behaviour but not immediately, and it can take up to six months.

The one thing I did not expect was an open wound where the stoma had been replaced into the abdominal cavity wall. When I say open it is of course covered in a dressing but a hole measuring 2cm deep by 3,65cm wide sits on my stomach.  It is now the one thing that is taking its time to heal. I have it repacked and dress every two days by the practice nurses, who tell me it is shrinking and they are pleased with its progress. They check the wound not just by looking at it but also by photography, which is a new tool in their medical bag.  What a selfie!!!!!

A nasty chest infection inflicted on me during my stay as an inpatient, thanks to everyone in the hospital wards coughing, has now gone. It definitely delayed my recovery and made the inpatient experience quite appalling. Still that was four weeks ago and all is good.

I see my surgeon in May and with luck and a following wind, excuse the pun!! I should be making my farewells to this part of the NHS hospital system. I still have a colorectal specialist nurse who I can call on anytime I have worries and she will organize my CT scan every year for the next four years.

I can truly say that all departments of the NHS have looked after me with care and consideration. It’s a marvellous organization, but on its knees now.  Who knows for how much longer can we proudly boast,” Free at the point of delivery from Cradle to Grave”

NB.( I caught Polio at aged nine in 1950, two years after the birth of the NHS. I was hospitalized for four years with a lot of spinal surgery being done. I know for certain no other generation will have the ongoing medical care that I have been lucky enough to count on over the past sixty years.)

 

Angela Wheelwright. Hayling Island, Hampshire.

March 2016