Dr. Dear,

I started my day by waking up 40 minutes after my alarm was supposed to go off; apparently in my exhaustion yesterday evening, I completely forgot to set it…. ooops!  So, thanks to my husband, I ate sweet potato, bacon and veggie hash cooked in coconut oil – it’s actually really good and surprisingly not weird as breakfast food.

Today I was energized and feeling good, except when I ate too many raw carrots and sugar snap peas…. I think my stomach is trying to figure out what I’m doing and it’s wondering where the chocolate has gone…. I feel its pain!  So, I really didn’t eat much because of the sore stomach issue, but I didn’t feel hungry either, until this evening when I ate Trout with courgette, bacon, mushroom and cabbage.  Another tasty meal from my husband.  You may notice a theme here: I probably wouldn’t eat at all if my husband wasn’t preparing my food.

I’m committed to making this weekend about preparation for the week ahead, so hopefully next week should be better organized.  Also, the food processor I ordered arrived today – other than being a beast of epic proportions, it looks awesome and I’m sure I’ll be julienning my veggies for months and getting pleasure every time I whizz up the blade – I’m a sad, sad person.

I went to see my specialist Rheumatologist today.  He’s awesome, but so conventional as a MD that it makes me smile.  I told him in no uncertain terms that I wasn’t going to take Prednisone unless I was imminently going to die without it.  He told me that a short course when I’m having a bad flare is actually ok and that it’s just long-term use that has terrible side-effects.  In turn, I told him he wasn’t convincing me and that I had decided I’d stick with the methotrexate and a new diet plan.  He (looking sceptically on) asked me what I’m doing and I told him my plan.  He said “there’s no evidence that giving up gluten and dairy does harm, so if it makes you feel better, then I fully support it as part of a healthy diet”.  I guess that’s pretty-much an endorsement from a MD, but he was smiling like he didn’t believe it.  I am sure that when my change of diet helps cure me of RP or at least helps control it, my Doctor will be convinced the Methotrexate did it …. but I won’t mind a bit if that’s what he says: I’ll know the truth and I’ll be fixed so it doesn’t matter how it happened.

My Doctor gave me a brochure for an RP support group based in the US.  He said they don’t seem to be ‘touchy-feely’, which I can’t stand, so I accepted it and will have a look at their group to see what they do and say.  I’ll share what I find out.

Finally, an interesting thing he told me: in the clinic they now have about 10 cases of RP.  This is more than they used to have on average and they think it’s because people are now being diagnosed properly.  I asked him how those patients are doing and he said that it varies.  Some have had to have surgery on their airways to put in stents.  This was more motivational for the diet than anything I’ve read thus-far.  I mean, who wants a stent in their throat??? Not me, not ever!

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