Malnutrition can be a contributing factor to death.
Starting from my mouth, (dry mouth, small mouth, difficulty in swallowing / chewing), to excess acid reflux, intense stomach pain, bloating, frequent bathroom visits- by way of a few examples of the symptoms to be juggled.
Granted, that this may also be due to me taking bosentan 125mg twice a day continuous since October 2012.
Hardly surprising that I constantly felt so bloated, tired and lethargic, and I was unable to eat much, as after a few mouthfuls, I felt full.
By Day 2, I felt better and noticed a very welcome difference and improvement.
By Day 7, I felt so much better that I have continued with daily juices ever since.
For the first 7 days, I drank freshly made juices by me, turning my kitchen into my pharmacy.
After the first week, I reintroduced solid food.
I juice 2 golden and delicious apples, ½ peeled lime, cucumber, ½ pineapple. To this juice, I add 1 tspoon Spirulina powder, 1 tspoon Wheatgrass powder, and a probiotic capsule, and ice. The final product may not look very appetising or appealing, but it actually tastes quite sweet and refreshing!
However, their consumption was not a helpful choice for my body, even though the alcohol numbed the pain and made the world even more of a beautiful place.
The ‘hang-overs’ were too intense and went on for too long. Again, not surprising, since alcohol is a natural depressant.
During this time, I was eating very little, in an attempt to minimise my GI symptoms.
Frequent toilet trips whilst being an officer of the court do not work well together. Eventually, my body responded by collapsing and I had to cease my court room practice.
I help Kelli with the ‘Healing Loving Scleroderma with Real Food’ Facebook Page, where we post regular updates, tips and recipe ideas.
As we know, there is currently no cure, with treatments targeting symptom suppression as opposed to direct disease progression and reduction.
All in all, I want to feel good.
An edited version of this article was published here, in my Column with Scleroderma News.
Planning for the Future, Click here
Rare Disease Day 2020:
Listen to my interview with John Smeeton, (Silver Fox), from the Royal Free Radio, here
Raise awareness and donate to medical research, order your #SclerodermaFreeWorld #RaynaudsFreeWorld tshirt here
Rare Disease Day 2020: NIHR 'Research gives hope to Rare Disease patients', Click here
Rare Disease Day 2019: 11am 97.4RockFM headlines, NO CURE, Click here
2017 Rare Disease Day Medical Research
2016 Rare Disease Day Patient Voice
provides the brightest light,
for the illumination of
the rare disease patients’ plight.
To read about medical research at the scleroderma unit, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
The Importance of Medical Research and Awareness to the Scleroderma, Raynaud's, Autoimmune Rare Disease patient, Click here
2018 Scleroderma Awareness Raising and Medical Research, Click here
Raynaud's- How to Diagnose, Click here
Unmet Medical Needs, Click here
Calcinosis Video, Click here
The scleroderma tooth fairy, Click here
Skin Cancer and scleroderma, Click here
|Prof Chris Denton and I, Sept 2017|
This year, 2020, I am celebrating 22 years of being a patient at the Scleroderma Unit, The Royal Free Hospital - a world leading expert specialist, research centre.
|Chat Magazine May 2019|
|James Carver, myself, Prof Chris Denton|
I am immensely grateful to James Carver, former MEP, for organizing this event in memory of his late wife Carmen, who sadly passed from Scleroderma.
|The global Raynaud's trailblazer - Dr Howell and I, Sept 2017|
#SclerodermaFreeWorld #RaynaudsFreeWorld #Research
100% of your monies will be used for medical research purposes only. NO wages or admin costs. Thank You.