January 25, 2012

January 25, 2012

Hello there everyone! Things have been pretty low-key around here. I am a low-key kind of girl, so I'm happy! But I am here to share with you the beautifully humdrum details of the past couple of weeks! I saw my hematologist/oncologist at St. Louis Children's Hospital this past Monday. In all my years of seeing countless doctors we had never recorded the date of my next appointment incorrectly. Until now. My appointment was actually scheduled for the following Monday! Um, oops. Thank heavens I was seeing dear, sweet Dr. Wilson! I have met with doctors in the past whom I fear would have wacked me with their stethoscope under these circumstances! But Dr. Wilson made time to see me, for which I am so very grateful, as trips to St. Louis leave me feeling awfully wiped out. Anyway, I have officially tapered off the Anakinra injections that I have been doing to stave off my HLH. So we are just keeping an eye on things for now. I am feeling just plain YUCK lately. A lot of pain, exhaustion, and... Just yuck! But I have a rather bright prospect for help. In my last post I mentioned that, when I was in the hospital at the end of last month, it was suggested that I see a particular neurologist who is reputable for helping unique patients such as myself who don't exactly fall into the realms of a specific diagnosis and treatment plan. We just had a call from this doctor's office this morning, and my first appointment is set for February 2nd! Dr. Wilson is optimistic that this neurologist might have some guidance as to methods to more adequately manage my pain. Oh my, how I would appreciate some relief! Although I have had to follow a winding path to reach this point, I now have a few wonderful doctors on my team... A great neurologist would certainly be a blessing! There's been a lot of fun here at the Frey house lately! Last week Tim had to travel for work and, while we certainly missed Tim, we were so excited to have Krista and Lulu here for a week-long sleepover! Krista and I had plenty of sister time, and Lulu and Alice had plenty of cousin time. It was an all-around win! I threw a fiesta in Krista's honor. I provided my homemade, from scratch chimichangas and flan, and Ricky Martin was in charge of entertainment. The only thing missing was a piñata, but that may have been a bit extravagant for a Wednesday night, don't you think? But the fiesta was muy magnifico, and Krista esteemed it as my grandest culinary triumph to date. This weekend: French cuisine with Maurice Chevalier. Ooh la la! (My French is very limited. My knowledge of the language goes little beyond "Ooh la la" and "Ou sont les toilettes?"... I think those will cover me when I backpack across the French countryside.) And Mom is on a painting kick! On my lengthy list of possible occupations, becoming an interior decorator falls somewhere in between rehabilitating lions in Africa, and founding a Doodle farm, while operating a quaint tea shop on the side. I am a multi-faceted person. Anyway, Mom's redecorating has been quite diverting for me, as I love exploring the vast world of paint colors. The dining room has been transformed into a charming little setting for the tea parties I will be hosting. We will be tackling my bedroom in a few days! We are in the process of taking down my Christmas decor, so it is all rather bittersweet. But once the walls have been revamped, that Dutch door will be installed as soon as possible! In fact, unless my ears deceive me, I believe my new door was just delivered a few minutes ago! Please excuse me, I believe this calls for a happy dance!

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