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.
The change in my diet has enabled me to see and feel improvements with a range of my symptoms. During the last 4 and a half years, I have only needed antibiotics on a few occasions, due to dental extractions as opposed to ulcer infection.
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.
The conclusions of which, suggested that gastro-intestinal bacteria flora
An edited version of this article was published here, in my Column with Scleroderma News.
To read my articles:
Rare Disease Day 2018, Research - Taking Part in Clinical Trials, Click here
March Autoimmune Disease Awareness Month 2018, Click here
Global patient video, Click here
Becoming a Patient Research Ambassador for the NIHR, Click here
If we only had more RESEARCH investment for Scleroderma, Raynaud's, Autoimmune Rare Disease, Click here
Expert Specialist Centres, Click here
World Scleroderma Day 29th June 2016, Click here
World Scleroderma Day 29th June 2017, Click here
Why Global Collaboration is important to the Rare Disease Patient, Click here
2016 Rare Disease Day Patient Voice