I have been a member of several online health communities such as communities for breast cancer, heart disease, diabetes and depression for the last 20 years (yes, even before Facebook and other social media came along, there were active online patient communities). A few things that I have learnt from people’s posts in these online communities are: (1) the acute misery of disease, (2) the constant fear of recurrence, and (3) the daily side effects that is a reminder of the misery. One other common issue is that while we are focusing on treating one health issue, we often become ‘at risk’ for several others. For example, cancer increases your risk for heart disease and heart disease and treatments increases your risk for cancer, and as is well-established, diabetes is a risk factor for a lot of other diseases.
However, our healthcare system, and we as patients, try to focus on one disease at a time, until we have them all together and is in a complete mess. The only way to prevent that from happening is to dedicate at least an hour for self-care every single day, rain or shine. The self-care routine should include activities such as exercise for the mind and body; routine taking care of things that need attention and thinking and evaluation. It should also include writing down each and every symptom that you have, keeping track, reflecting on it, evaluating it and coming up with solutions to improve with a long-term perspective. I have found from personal experience that writing down a symptom (such as pain, or anger or depression), somehow alleviates the issue - if it is emotional, or lets me forget about it - if it is pain. It also helps me feel more in control.
I started keeping my own personal health journal, first in Evernotes, then in an Excel sheet and I have been doing that for almost 9 years now. After trying these and several other tools/apps, I became convinced that I needed a system that would allow me to have all of my health data in one place – data on minor and major issues, all kinds of symptoms, weight, diet, exercise – and also see the data in chart form so that I can visualize my progress. I also wanted to compare two different ailments – for example, a GI issue and sleep or stress - to see how one might be impacting the other. This is what gave rise to developing of the myHESTIA system. I have been working on this for almost 2 years now and I am in the initial phase of testing it with users.
The platform myHESTIA (HESTIA stands for Healing Ecosystem for Self-care and Therapeutic Integration for the Aging), is a Comprehensive Digital Self-care Support System (CDSSS) that aims to support self-care for those with multiple chronic conditions (or are at risk for multiple chronic conditions).
The myHESTIA platform (Hestia is also the name of the Greek Goddess of Home and Hearth and the healing that takes place within one’s home) is a home and community based platform and it aims to help people at the ‘point of need’. myHESTIA was developed with inputs from many different types of physicians (generalists and specialists) and other health care professionals. They all agree on one thing – if patients did their part at home, diagnosing and treating diseases would be much easier.
my HESTIA is specifically for those who are dealing with multiple chronic conditions/issues, for those who want to take charge and understand what is going on, for those who want to take preventive steps and for those who are doing daily journals (or want to start daily journaling). If you think that means YOU, please contact me firstname.lastname@example.org for using myHESTIA.
Disclaimer: Please note that myHESTIA is an independent organization, we collaborate with local organizations that provide help and support for aging population.
The information contained in myHESTIA is for educational use only. It should not be used as a substitute for professional medical advice, diagnosis or treatment. myHESTIA DOES NOT ENDORSE ANY PRODUCT, DEVICE OR SERVICE, INCLUDING ANY PARTICULAR MEDICATION OR TREATMENT DEVICE.
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