Why don’t I ever talk about which medications I take? What I do to help my symptoms? What have I tried? What diet do I follow?
The answer is very simple to me and I hope, understandable to my readers.
The reasons are that I have tried, and will continue to try everything I can to try and better manage symptoms and diseases activities, including steroids, immune-suppressants, anti-inflammatories, vitamins, diet, fads, alternative therapies, self help, detoxing, meditation… everything I can. And I will no doubt spend my entire life devoted to trying to manage these diseases I have and I try to keep an open mind and open heart. In short … I will continue to TRY.
However we are all so different that we all respond to different things and in different ways that it is impossible and almost pointless to try and have a discussion with Autoimmune fighters about what they are doing and what they recommend. These things are all anecdotal evidence of what works, or doesn’t work for them, sadly these diseases do not play by any particular rules and will not play by the same rules as the person sitting next you. It is the ultimate reminder of how individual we truly are. There is a reason there are over 80 Autoimmune diseases and many combinations of illnesses and co-morbidity.
Therefore I don’t talk about any particular approach. I don’t recommend trying any drug or protocol. I strongly encourage that your choice be a combination of the research, information, medical advise, trial-and-error that you wish to try for yourself. Follow your heart and intuition. Do what YOU need to for your peace of mind. The only things that I can add are those universally accepted suggestions that are known to be ‘good advice’ ie. Be kind to yourself, eat well as you can, exercise if/when you can, reduce stress, enjoy as much of life as you can, believe in yourself, accept yourself and your diseases as being a part of who you are not proof of your unworthiness. I have had to come to these conclusions for myself and they are not easy to do. There is NO such thing as easy choices or answers once you become chronically ill or disabled; they are a thing of the past for us.
The believe that the limits of effective treatments of Autoimmune Diseases are a failing and weakness in science and society NOT a weakness in our character or worth. I hope that one day there will be real break troughs and improvements in the treatment of these diseases (and indeed all diseases) but until then I try and make the most of what I have to work with.
Telling the world what I have done and what I would do to manage my systemic health challenge would not change anything for me or for my reader, but I share in your frustrations, your pain, your disappointments, your fears and your concerns about how difficult and life changing these diseases are and how incredibly difficult it is to cope with them. We are all the heroes of our own stories, no matter what we have done or continue to do. All I hope to achieve by blogging and sharing my thoughts about anything and everything (other than drug information) is for the purposes of reminding me, and you, that we are not alone in our struggles and as a community we can unite in respect and empathy.