The truth about living with Rheumatoid Arthritis

#eosinophilic esophagitis

Rheumatologist follow up 27 Jan 2017 and the plan for the weeks ahead

On Tuesday the 17th I saw my rheumatologist. The appointment was long and it was the usual.  I wanted a steroid infusion to get on top of the inflammation and pain. She refused, because she believes that my inflammatory arthritis is not severe enough for a steroid infusion.  We debated, but ultimately she just refused.

Her idea was to switch me to my final biological.  Fail Xeljanz, on the basis that my liver enzymes are rising again, and I had been in the ER the previous Friday with severe upper GI pain.

I asked her if this would definitely be my last biological.  In Australia you only get five biologicals in your lifetime. After that, you’re out of treatment options. There are ways around that, in some special cases, but she confirmed that she would not be going to pull any strings for me.  She threw around the fibromyalgia word and ‘pain sensitisation syndrome’ and I just smiled and nodded.

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Eosinophilic Esophagitis, stomach pain and back on the Top 8 Elimination Diet

Today is my son’s 16th birthday.  Excuse me while I indulge in cliché, but where have the years gone???

His favourite place to eat, and a long-time favourite of our family’s,  is Brod Burger, on the Kingston foreshore in Canberra. They make the very best burgers in town.

But they do not do gluten free at this time.

I have Eosinophilic Esophagitis. I am definitely allergic to wheat, and probably all gluten containing grains.  I am very likely allergic to dairy, but that isn’t definate yet.

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What is Eosinophilic Esophagitis (Oesophagitis)

Eosinophilic Esophagitis (EoE), also known as allergic esophagitis, is an inflammatory disease of the esophagus.  In Eosinophilic Esophagitis, the lining of the esophagus is infiltrated with eosinophils, a type of white blood cell that cause inflammation in the presence of allergens.  Food allergies are most often the suspected caused, but environmental allergens can also play a part.  People who have Eosinophilic Esophagitis often have other allergies as well, such as hay fever and asthma.

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Rheumatoid arthritis and losing your appetite

I don’t have an appetite.  People joke and say “I wish!” but it is not a good thing.  What it means is I find it hard to eat, I can’t enjoy food, and while food is primarily nutrition – fuel for your body, it is also a huge source of pleasure, and social interaction.  People gather for a meal to enjoy it together. If you don’t eat, people notice, and sometimes become uncomfortable.  And enjoy their own food less.  Or they don’t eat either. (‘Oh if you’re not having cake, I’ll just have coffee too…’).  It’s awkward to say the least.

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Colonoscopy and Endoscopy over!

Colonoscopy over!  Going in first thing in the morning is great, no chance of running late.  I arrived at 8am.  Was prepped by 8:20am.  Sedated at 8:45am and woke up at 9:45am.  My ex-husband picked me up at 10:30am, and I was home by 11am.

Post procedure I’m feeling pretty crud.  Lots of stomach cramping –  I don’t remember that from last time.  Lots of gas, and still needing to be near the bathroom. I thought I’d be all good.  I even planned to go to gym. Hahaha…no.

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