This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

In my opinion

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You may be aware that I read a lot. I mean a-lot-a-lot. I have even begun sharing with you how much I read because I believe reading is the gateway to cognitive development, learning how others think, feel and behave, and finding different ways to consider life as it happens (real or imagined). It is in the last few years only that I have moved away from my long-running, ever deepening, satisfying obsession with fantasy fiction and similar forms of literary escapism. The past year I have grown the strength to pick up, engage in and complete the reading of scientific texts, research documents and sociology-, psychology- and anthropology- based texts. It is hard and I have been confronted so often and in so many ways I could never have believed possible. It has lead to me to probe different cultures, lifestyles and belief practices.


Recently I have been confronted on an equally cognitive front, which bears much personal affect on myself. Deep within my shell of university assignments and research projects I have felt a dear and almost personal attack from recent events which you may or may not have heard and I am forced to come to the surface, not out of reluctance, or to defend myself, but rather I want to share my personal believes on a few issues which I think bear a great weight of consideration on each unwell person. I dislike confrontation and I dislike entering into debates regarding personal beliefs or practices. I respect each individual’s right to act and feel in their own way, as best suits them.

I do not know where you are reading this. I will start by confirming I am a twenty-six (26) year old woman. I was diagnosed with my first potentially life-threatening illness (Idiopathic Thrombocytopenic Purpura) when I was in my middle-teenage years (as a fifteen year old if I recall correctly). I have spoken about this disease already but want I didn’t share was the treatment process my mother took me on. We saw Naturopaths, Bowen therapists, I had acupuncture and took Chinese Herbs. I saw other Homeopaths, as well as a Pathologist. I must stress that the whole time we addressed these numerous doctors I maintained my medical teams prescribed drug plan. The management of this illness took up to 3 years until it was regulated and controlled. If you question the amount of money we spent, the private health system covered much of what Medicare did not. The appointments were staggered, and my mother shared up to 5 part-time jobs at any one time to help finance not only my health, but also addressing the family’s wants and needs, and to supplement my father’s income. Only three months after I was ‘released’ from hospital  the Pathologist wanted to remove my spleen, given that it was the perpetrator of my platelet massacres. This was the reason for the ‘alternative medicine’ options.

It has been since this illness that I do regularly visit a range of optional ‘alternative medicine’ practitioners. I do not believe they are the sole answer. I do not believe they should be considered as equally as, or more than, the medical practitioners we see. If any of these treatments were that great, the key identifiers would be integrated in to the drugs that medicine companies create. 

Since that diagnosis ten years ago I have been on a regulated diet. This diet was devised by a qualified nutritionist. I saw him on numerous occasions. He performed many tests on me. He has identified what foods, food groups, nutrients and herbs work for me and which ones are not so great. I have been told by many medical and nutrition experts that if I am not allergic to it, and have no intolerance to it, then I should eat it in some regular quantity. It is often when you stop these foods that your body becomes intolerant. Sugar, dairy, gluten, wheat, fat. It is all the same. It is not always how intolerances develop, but it can be what will happen. To structure a dietary plan an individual must consult numerous experts, and be monitored regularly to confirm it is working as it should be. 

So what do I eat?

I have fresh fruit and vegetables. I make rubs for my meat. I only eat 150-200g of meat in one meal a day (if that). I have seeds, dried fruits, nuts and grains in my stir frys, My diet is largely raw (except for meat and some stews/casseroles/soups). I eat chocolate, cake and pizza, I drink coffee and hot chocolate. I love chili, garlic and lemons, in all my meals.

I do not eat:

MSG added foods, foods with additives or preservatives, fast foods and trans fats. I do not drink drinks with added sugar, pre-mixes or pre-bottled drinks.

Why? 

Food that is highly processed has lost a lot of it’s natural nutrients. The body is not built to process and break down unnatural foods. The amount of sugar in bottled juices and soft drinks is horrific, and to my mind seems almost like a form of kidney torture. I mean yes a glass of orange juice is nice, but you look at how many oranges must be juiced to fill a satisfactory glass-that’s more than the recommended daily fruit intake…think about it. Full cream milk may have more fat, but that fat is where much of the nutrients actually are. I’d prefer a few more calories at the expense of a few more nutrients.

Nutrients are easier to access in food that is in a more natural state. Do you actually realise how much food you need to eat when you aim for the Australian health standard of ‘2 Fruit and 5 Veg’ (which by the way-Aussies- this is a very low standard compared to the rest of the world). To eat the right amount of fruit and veg you won’t feel like you still need to eat. I challenge you to eat this each day and if you are still hungry after that go to town on that black forest mud cake. Cold-pressed juicing is great because it only removes the need for the body to break down the food to access nutrients. Plus you can fit more vegetables into your day when you juice. It’s all described in film ‘Fat, Sick and Nearly Dead’.

Wow, now my diet is covered I would like to mention I completely support the idea of utilising any alternative therapy you feel will benefit you. But only when you keep on the path the doctors have prescribed you. It is your body. You must tell them when something isn’t working. You can ask questions. But you should only stop if they have suggested it may be necessary (ie when you feel like killing yourself or others or when you have uncontrollable vomiting and diarrhea). Otherwise book an emergency appointment and TALK TO THE DOCTORS. Take control of your body and life. 

Be discerning with your alternative therapies. Many have been disproven as effective. I speak with my parents about this as they have magnet bracelets and take supplementary vitamins (both of which have clearly been shown to be not as advertised. But the placebo effect is used in medicine research and therapies for a very important reason. It works. When I say be discerning, I mean if you are questioning which mixed vitamin to spend $200 a month on, then do the research. I use supplements. I also investigate who has undertaken the research to support the product.

Hint Hint: If a sports science institute, INDEPENDENT medical research organisation or health university program has researched this then it is better than a project paid by the company that makes it. I’m not saying don’t do it, but I am suggesting to do your own searches and be aware of how much you spend and whether it is the right treatment for you.

So, why am I ranting and what has bugged me?

I am bothered with sharing my own practices because I do not want This Lupus Life to be a page for me to push my products. I do not wish to claim I have THE ANSWER, that I know it all or that my life is any more valuable, important or superb than anyone else’s. I want to show people chronic illnesses that they are not alone. I want to say that I am a strong, indpependent soul who just happens to have a larger obstacke is her way than some others’. It isn’t the biggest and it isn’t special, but it’s mine. I want people who know a sufferer to know what it is like. I talka a lot and I write well (or so I’m told) so I am the vehicle for all those voiceless individuals to reach out. I didn’t want to tell about what I do specifically and why becuase I do not believe that what works for me will definitely work for you. I do not believe trying my lifestyle will undoubtedly cure anyone, just as I would never invite my enemies to live my life.

What has upset me is certain social ‘health’ bloggers who may or may not be qualified in one specific area of ALTERNATIVE medicine, or ‘know someone who is sick’ or ‘read this really good article once’ and decided to make millions or billions of dollars duping the many sufferers in the interweb. People have suffered because of this hubris and they continue to do so. Even doctors do not have all the answers because you don’t have a manual. NO body is the same as any other body. No illness runs the EXACT same course.

Finally, no person should make a half-informed decision about their best possible health-treatment program without support and regulation from their entire medical community.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

2 thoughts on “In my opinion

  1. Thank you I have lived with lupus for 44 years lost count how many times I have been to ICU and hospital months at a time. I have a 15 assorted surgery’s. I have worked and lived my dream traveled the world (got to see other hospitals ). Have been in a loving relationship for 25 years. You just do your best with what you have to keep well, do what makes you happy Alexandra Beesley

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  2. Pingback: Wednesday at the Naturopathic Biochemist | This Lupus Life

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