We have a date! After almost 4 months in hospital, it looks like I'll be going home on Thursday 14th May 09. If the latest blood tests (taken today) is positive, it means I am free of the chronic and severe bone infection that I lived with for the past 8 years. The next goalpost will be to ensure that the wounds heal completely or at least to the point where a skin transplant can be done. The challenge is to find a way to continue with the specialised wound treatment called VAC therapy that has so far helped to reduce the wound size considerably.
Since I have only a hospital plan, the medical aid will most likely not pay for continued use of VAC therapy when I go home. My wonderful doctor and wound sister is however busy motivating for the granting of cover for at least the next 2 months. But we have also thought of a Plan B: writing to the company supplying the VAC therapy to consider sponsoring the completion of my required VAC therapy. And in return they can then use me as a case study in their promotional material to show the effectiveness of this type of therapy to promote wound healing. So your positive throughts, intentions and prayers to help one of these options manifest will be greatly appreciated.
The second daunting, but also exciting challenge will be to raise enough funds through my trust fund and other means to cover the rest of my medical and living costs for the next 3-4 months. You see, with the wound healing as priority, I need to focus on getting enough rest and building my strenght through eating a protein rich diet and continuing with my daily physiotherapy. They weighed me last week, here at Medsac and I am now weighing 37kg while a normal target weight for me is closer to 50 plus kg's.
By the end of this week, I'll have a clearer picture of the fundraising target and strategy which will form part of the adventurous experiment which I want to call: "Accessing the Power of Now". So thanks again for all the emails, calls and facebook messages!
Have a great week
Jeanne
Monday, May 11, 2009
Monday, May 4, 2009
A life filled with miracles
I've created a blog to share with you the challenging, but also amazing journey I am experiencing. It is also my way of keeping everyone who is supporting me updated about my progress. Through telling my story I hope to demonstrate to you how life events has encouraged me to choose living an enabled life, rather than just simply living a mere existance focused on survival.
You see somewhere in my growing-up process, I internalised the message that I had to make it on my own. Only when I had no alternative to use a wheel chair, because of my health, did I learn that its ok to ask for and to receive support. My recent health crisis (see archive if you want to hear more), took this lesson to the next level. Becoming totally dependent, not even able to breathe, speak, eat or move, was my greatest fear in the past. But by going through this experience I discovered how not being in control opens opportunities to experience how much love and support there is all around us if only we allow it.
As I am learning to surrender and trust, events I experience as miraculous, is happening around me. After establishing the trust fund to support my recovery, enough money was donated to cover the most important expenses over the past 3 months. Thank you to each and everyone who made this possible. Also, the occupational therapists has put in an application to Discovey Health's Ex Gratia fund for a new wheelchair, a special wheel chair cushion and an air mattress for my bed at home. These assistive devices is essential to ensure my continued wound healing and recovery process. We heard today that our application was approved!
I will be going home within a week or two and we will be interviewing carers to support me at home, this week. My goal is to be strong enough to generate my own income in 4 months time so the next challenge is to raise enough money through the trust fund to cover my living and medical expenses during that time.
Thanks for taking an interest in my story. Till next time, from room 11 in Medsac, Strand.
Jeanne
You see somewhere in my growing-up process, I internalised the message that I had to make it on my own. Only when I had no alternative to use a wheel chair, because of my health, did I learn that its ok to ask for and to receive support. My recent health crisis (see archive if you want to hear more), took this lesson to the next level. Becoming totally dependent, not even able to breathe, speak, eat or move, was my greatest fear in the past. But by going through this experience I discovered how not being in control opens opportunities to experience how much love and support there is all around us if only we allow it.
As I am learning to surrender and trust, events I experience as miraculous, is happening around me. After establishing the trust fund to support my recovery, enough money was donated to cover the most important expenses over the past 3 months. Thank you to each and everyone who made this possible. Also, the occupational therapists has put in an application to Discovey Health's Ex Gratia fund for a new wheelchair, a special wheel chair cushion and an air mattress for my bed at home. These assistive devices is essential to ensure my continued wound healing and recovery process. We heard today that our application was approved!
I will be going home within a week or two and we will be interviewing carers to support me at home, this week. My goal is to be strong enough to generate my own income in 4 months time so the next challenge is to raise enough money through the trust fund to cover my living and medical expenses during that time.
Thanks for taking an interest in my story. Till next time, from room 11 in Medsac, Strand.
Jeanne
Trust fund
After 8 years of searching for the cause and cure for the health challenges that contributed to me becoming a wheelchair user, experiencing chronic pain, inflammation and digestive problems, I was admitted for emergency surgery in January 2009. I've now been in hospital for almost 5 months and my family have started a trust fund for me to help finance my recovery and living costs as I have not and will not be able to work for the next few months. The good news is we have discovered the cause of my ill health and the surgeries and subsequent treatment is providing a successful cure. If you are interested in supporting me in my process of recovery, you are welcome to either contribute to the trust fund, share my story with others or contact me (details are below).
Trust fund: LOUW DU PLESSIS (lawyers managing the fund)
Payment reference: J SMUTS (very important for tracking purposes)
Branch: SOMERSET WEST
Bank: FIRST NATIONAL BANK
Account number: 5368 0945 972
Branch code: 200-512
TRUST FUND: LOUW DU PLESSIS (lawyers managing the fund)
Payment reference: J SMUTS
Branch: SOMERSET WEST
Bank: FIRST NATIONAL BANK
Account number:53680945972
Branch code: 200-512
NB: Your reference: Please add your name, telephone number or email address.
If its an overseas payment please add Swift Code F I R N Z A J J
Trust fund: LOUW DU PLESSIS (lawyers managing the fund)
Payment reference: J SMUTS (very important for tracking purposes)
Branch: SOMERSET WEST
Bank: FIRST NATIONAL BANK
Account number: 5368 0945 972
Branch code: 200-512
TRUST FUND: LOUW DU PLESSIS (lawyers managing the fund)
Payment reference: J SMUTS
Branch: SOMERSET WEST
Bank: FIRST NATIONAL BANK
Account number:53680945972
Branch code: 200-512
NB: Your reference: Please add your name, telephone number or email address.
If its an overseas payment please add Swift Code F I R N Z A J J
Entering the rehab phase
On the 25th of February I was transferred to a general ward and 4 days later I could breathe and eat on my own. By the 6 of April I was transferred to Medsac, a hospital facility that specialise in rehabilitation. Here I am completing my last few weeks of intravenous antibiotic treatment to ensure that every trace of infection has been wiped out and I am receiving intensive physiotherapy and occupational therapy. We are also continuing with specialised wound care and the ultimate goal is to reach a point where the doctor can do a skin transplant and finally close the wounds.
Emergency admittance to hospital
On 21 January 2009, I was admitted to hospital for emergency surgery after becoming seriously sick the weekend before (I weighed 36kg). The first operation was done on the 23rd of January 2009 to investigate the source of the increased infection. They found and removed massive infection in both the bone and soft tissue and afterwards it was uncertain if I would ever be able to sit again. During the second colostomy operation, there were a number of complications, the first of which required of them to do a laparotomy. They then discovered a severely constricted small intestine as well as a colon surrounded by growths caused by radiation damage. That explained why I became ill again in 2000 and had such problems with food and digestion. The second problem was that my lungs became filled with water.
After the operations I was in a coma and the doctors did not think I would make it. My mother however assured them that I was a fighter and would pull through. After 4 days I regained consciousness, but could not speak, breathe, eat or move on my own. I could also not remember anything from arriving at the hospital till waking up again. My family and friends however made turns to come and visit each day to support and give me the courage to believe I will get better. There were times during my month stay in ICU when it all felt hopeless, but my family and GP convinced me that the miracle already happened and that it is not my time to die: I just had to focus on staying emotionally and spiritually strong and to concentrate on strengthening my lungs. So I shifted my attention to consciously choosing life and to be grateful for every breath that enables one to live.
After the operations I was in a coma and the doctors did not think I would make it. My mother however assured them that I was a fighter and would pull through. After 4 days I regained consciousness, but could not speak, breathe, eat or move on my own. I could also not remember anything from arriving at the hospital till waking up again. My family and friends however made turns to come and visit each day to support and give me the courage to believe I will get better. There were times during my month stay in ICU when it all felt hopeless, but my family and GP convinced me that the miracle already happened and that it is not my time to die: I just had to focus on staying emotionally and spiritually strong and to concentrate on strengthening my lungs. So I shifted my attention to consciously choosing life and to be grateful for every breath that enables one to live.
Searching for a cure
After being told that the conventional medical profession could do no more for me, I continued my search for a cure. During 2000-2003, I worked for the City of Cape Town co-facilitating Managing Diversity courses. I was astounded by how many of the course participants identified with my health story and also suffered from immune impaired symptoms. By the end of 2003 my health deteriorated to the extent that I was medically boarded and I had to move in with my Mom because I could not cope on my own anymore.
My search for a solution however continued and with the support of my carers and family and friends I was able to work from home by changing my focus from mainly presenting courses to developing educational material (for more than 25 courses to date). Although the costs to manage my medical condition were substantial, I miraculously earned and received enough money monthly to cover my financial obligations. By 2008, my, progressively increased intolerance of different types of food meant I could eat less and less which made me realize that I urgently needed to find a solution for the infection in my body.
My search for a solution however continued and with the support of my carers and family and friends I was able to work from home by changing my focus from mainly presenting courses to developing educational material (for more than 25 courses to date). Although the costs to manage my medical condition were substantial, I miraculously earned and received enough money monthly to cover my financial obligations. By 2008, my, progressively increased intolerance of different types of food meant I could eat less and less which made me realize that I urgently needed to find a solution for the infection in my body.
Misterious illness
By the time I went to university, further left leg complications, required of me to use crutches, but instead of it being a case of “bad luck”, I found that I was in fact much more mobile than walking without them. I completed my B.A. en B.A. Honours degrees and a Diploma in Adult Education and for the next 10 years I again lived an active and healthy life.
Then suddenly early in 2000, I became mysteriously ill with high fevers, muscle spasms and digestive problems. After several tests they diagnosed that I a rare form of rheumatoid arthritis called Adult Onset Stills disease. The thing is, arthritis is known as a health symptom of an overactive immune system that attacks the joints of the body which results in inflamation in those joints. Since I still had severe digestive problems, I knew I had to try and find out what was triggering my immune system to go into overdrive.
By end 2000 a small wound opened on the scar where the bone tumour was removed when I was 12. The arthritis became worse and eventually I was diagmosed with chronic bone infection, or osteomyelitis, a side effect from the radiation I had as a child.. By 2001 my health situation had deteriorated to the extent that I had to use a wheelchair as an assistive device. Several attempts to treat the bone infection using intravenous antibiotics proved to be unsuccessful and I was informed that I should focus on “just managing my condition".
Then suddenly early in 2000, I became mysteriously ill with high fevers, muscle spasms and digestive problems. After several tests they diagnosed that I a rare form of rheumatoid arthritis called Adult Onset Stills disease. The thing is, arthritis is known as a health symptom of an overactive immune system that attacks the joints of the body which results in inflamation in those joints. Since I still had severe digestive problems, I knew I had to try and find out what was triggering my immune system to go into overdrive.
By end 2000 a small wound opened on the scar where the bone tumour was removed when I was 12. The arthritis became worse and eventually I was diagmosed with chronic bone infection, or osteomyelitis, a side effect from the radiation I had as a child.. By 2001 my health situation had deteriorated to the extent that I had to use a wheelchair as an assistive device. Several attempts to treat the bone infection using intravenous antibiotics proved to be unsuccessful and I was informed that I should focus on “just managing my condition".
My story - the past
I was born in 1966 in Somerset West, and grew up in the Strand, close to Cape Town. After 12 years of an active, healthy life I was diagnosed with a rare form of bone cancer. I received intensive radiation and chemotherapy after the tumour was removed from my left hip, sacral area. Afterwards they also discovered that I had nerve damage that affected the muscle control and growth of the left leg. The cancer treatment was however successful and with the help of physiotherapy and the use of a special shoe, I could eventually walk on my own again.
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