February 16, 2012
Hi everyone!
Sorry for being a bit incommunicado lately! I have been keeping a rather busy schedule!
As I mentioned in my last post, I had an appointment with a new neurologist, Dr. Al-Lozi. I have seen a few neurologists in the past, in Cleveland, New York, and Connecticut, but they were of little help. Thankfully I do not feel that way about Dr. Al-Lozi. He is so very kind, and genuinely caring. He wants to get to the bottom of all this periodic paralysis stuff. And he is so cute! Not “Oh Moondoggie is such a dreamboat!” kind of cute, but “sweet, 5 foot 2 inches tall, elderly gentleman” kind of cute.
My first meeting with him made for a very long day for me. Following my appointment, I had to have blood drawn for tests. My peripheral veins are awfully persnickety, so it is necessary to draw blood through my central line. This always raises a bit of hubbub at the hospital, leading to a tiresomely long wait for me. But I am happy to have wrapped it up all in one day! Dr. Al-Lozi is checking many things, including my potassium levels, as often times people who have periodic paralysis caused by channelopathies are unable to properly store potassium. He is considering the possibility of my periodic paralysis being attributed to mitochondrial channelopathies. Please forgive me, though, as I have much to learn on this subject. I will try to explain it more adequately in the future.
Additionally, Dr. Al-Lozi had me return the next week for nerve conduction studies and an electromyogram (EMG). These tests can be helpful in diagnosing or finding the cause of neuromuscular issues, including paralysis. This was my fourth time undergoing these tests, and I am not at all fond of them! They are very painful and exhausting for me. So I spent that evening cuddling with my favorite Doodle puppy and watching “The Many Adventures of Winnie the Pooh”. Now that’s what I call good medicine! The nerve conduction studies and EMG checked out just fine, which is not too unusual of periodic paralysis whenever it is inactive. But Dr. Al-Lozi is going to continue looking for the cause behind this issue. I feel so fortunate to have him as part of my team of doctors! And what a blessing that he is right here in St. Louis. The Lord truly does provide!
Unfortunately my feeling extra lousy has lingered. My blood counts are remaining too low, but I cannot pretend to know what issue is causing what symptoms… So don’t ask me, my body doesn’t consult me about such things! But I am continuing to say my prayers that I will find some pain relief and answers soon.
However, I am still very jolly these days! I have some exciting news! So if I could have a drumroll please… My bedroom is officially Dutch! Yes, that’s right, my Dutch door was installed just the other day ago. It is even lovelier than I ever could have imagined!
Mom thought I was a kook when I included a Dutch door on my Christmas list, but she, too, admits that it is very nice! Mom also painted my room. Has anyone else noticed that Jeanne Frey is Wonder Woman? Anyway, after analyzing what seemed like an endless amount of shades of aqua blue paint, we finally settled on the perfect color. The entire transformation has come together beautifully! So my environment has recently improved exponentially.
I hope that you all had a delightful Valentine’s Day! I treated my valentines (aka, my parents) to a breakfast of baked maple pecan French toast with my homemade challah bread. Last year I spent the holiday in the hospital with an HLH flare, watching “Grease”. Danny Zuko makes for some pretty hunky entertainment, but, needless to say, I found my Valentine’s Day this year to be much preferable!
I have also taken to studying tea party etiquette so that I can host a proper afternoon tea like a fine lady. But I am watching “Pippi Longstocking” at this very moment. While in attendance at a coffee party, Pippi is scolded for picking her nose. And so she inquires, “Well what can a fine lady do when her nose itches?” Hm, I will have to consult my books on that one!
Cheerio!
