Thursday, July 1, 2021

DAY ONE HUNDRED FIFTY-ONE OF COOKING COURSE

 I finished my first pastry.  I am really happy with the way it turned out.  It tastes amazing.  Yesterday I made the dough and the pastry cream.  Today I put it all together.  I rolled out the dough, put on the vanilla pastry cream, cut up some strawberries and shaved a tonka bean.  Then I rolled up the edges and put on a wash.  Then in the oven it went.  I made a Galette with Strawberry Tonka Filling.  It came out so golden and delicious.  It is a tiny galette for three maybe four people with little pieces.  I ate a quarter of it already.  


I spoke to my Rheumatoid Arthritis doctor today.  He said he has not seen other patients who have had my reaction to either the vaccine or not bouncing back after going back on the Orencia.  But he said he only sees so many patients and it has only been weeks since many have taken the vaccine.  He said time will tell if others are in the same boat as me and research will tell in months or a year if others have had the same issue.  He, of course, wants me to increase the prednisone.  He always does.  I need to think about it.  He caught me rolling my eyes when he said it.  I forgot we were on video chat.  I will see how it goes.  He sent the meds but I want to wait longer and see before I increase the prednisone.  

For those of you new to this blog, I have increased prednisone before and I am very sensitive to prednisone.  I have a very hard time decreasing it.  I can increase it really well.  I eat like crazy and gain weight.  But then I can't get off it.  Even decreasing 1/2 mg takes me years because I will get thrown into a flare and/or I get sick.  So I usually want to plan when I decrease during a time that nothing is happening like a trip or work or holidays or I am sick.  Pre-Covid those times were few and far between.  Now I don't want to flare during Covid because I am house-bound and I don't want to flare when my access to doctors, friends, and everything is limited. I have to wait 48 hours for a prescription.  I don't want to get sick and having a bad flare leaves me open to that.  

Anyway we agreed that I would think about taking the prednisone and he agreed to send me a prescription.  We will check in in three weeks if I am not better.  He then seemed exasperated that I might have to change from Orencia if it is not working since it took him jumping through medical hoops to get me on this medication.  I am so limited on the medications I can take if I have to get off Orencia, I don't know what I will do.  This is one thing people don't talk about.  What happens when you have a disease for so long, you outlast the effectiveness of the drugs available??   I think people think you get on a drug and you stay on it forever.  That unfortunately is not the reality in my case.  I seem to run through drugs and get weird side effects, reactions, etc. But I am sure there will be a new drug created soon and I will be the perfect candidate.  

I did walk with Lucky today.  She walked 3/4 of the way and vomited.  She ate right before we left for the walk and I think it was all too much for her.  

Until tomorrow...

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