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Showing posts from February, 2011

Salt and Grease in Disguise

On Valentine's Day we went to a trendy Chinese chain restaurant. All four of us had a great time. As we chowed on mongolian beef and "Nu-nus" as Naomi calls Noodles, we were raving about how good it was. We just couldn't get enough. There was a little fried rice and nu-nus left for lunch the next day, so we boxed it up, ate our fortune cookies, and headed home. We walked into the kitchen and Mike said, "You know, for as tasty and good as that was, it's really just a bunch of salt and grease in disguise as trendy chinese food." This is as we both were incredibly thirsty, guzzling down water before turning in for the night. Hmm. Salt and grease in disguise. There are so many disguises going through my mind, good disguised as bad, bad disguised as good, and lots of in between. This is prompting me to think about Matthew 10:16, "Be wise as serpents—and harmless as doves." My "harmlessness" probably comes across as a dumb blonde

Down to 2 Mestinon

Physical update: As far as I understand, Mestinon is treating my symptoms (allowing me to swallow, talk, etc.) and the steroid is trying to stop my body from producing an antibody, and the antibody is causing all of these problems to begin with, but it has not been confirmed specifically what antibody it is. I have had a very busy weekend, and still only needed to take 2 Mestinon as of today, as opposed to 6 as of last weekend. So . . . hopefully this means the regimen is working. Yay!

Psalms for Real

Mike and I are systematically going through Psalms and Proverbs. On the 4th - read Psalm 4 & Proverb 4, etc. I am so grateful for these Psalms, especially that they re-direct me to the Lord. Here are some findings that spoke to me specifically. Psalm 4 To the choirmaster: with stringed instruments. A Psalm of David. 4:1 Answer me when I call, O God of my righteousness! You have given me relief when I was in distress. Be gracious to me and hear my prayer! 2 O men, how long shall my honor be turned into shame? How long will you love vain words and seek after lies? Selah 3 But know that the Lord has set apart the godly for himself; the Lord hears when I call to him. 4 Be angry, and do not sin; ponder in your own hearts on your beds, and be silent. Selah 5 Offer right sacrifices, and put your trust in the Lord. 6 There are many who say, “Who will show us some good? Lift up the light of your face upon us, O Lord!” 7 You have put more joy in my heart than they

Halfway Through a Peanut Butter Sandwich

Ok So I can only eat half of my peanut butter & jelly sandwich, made the way Oma would, cut in triangles so there are no crust corners and all. I can't quite get through a small book for Naomi without my voice going out. I can't quite make it through a whole day with my two children alone. I have leaned steadily upon the Lord's strength, and several times been in much despair, because I haven't. There comes a point, like last night, when you want to rebel. For me it was throwing in the towel on the whole disease thing and making a good dinner inspired by Guy Fuiri's Crispy Potato Nugget Hoisen Halibut recipe. Turns out I drove myself crazy and my loving and strong husband led me back to the Psalms. Woe is me, I am in despair. God is strong and can do immeasurably more than I can think. Woe is me, I am having a rough time. God is sovereign and His grace abounds ever more. Woe is me, I'm not really looking forward to another 2-3 months of a dis

Appointment

It was Groundhog day, and the appointment that seemed so far off was here. Yesterday. It turns out that despite my silly worrying, the neurologist was pleased with my progress. We are slowly altering my medicine regimen and are looking at a time frame of about 2-3 months to stabilize before going on to alternate routes and ideas. I REALLY like my neurologist. He has a calm and pleasant demeanor and seems to have harnessed wisdom and intellect stored on neat little shelves in his mind. I guess this is how many doctors have to learn to function. God has gifted them with high intelligence and somehow throughout training and experience, the doctor has to harness and communicate well to the patient what would serve him or her best, within that season. It paints a clear picture of patience for me. Imagine all that studying and interest into a rare disease (which I have). Then MAYBE once in 10 years someone comes along that presents as if they have the disease. Would you be able

Mysterious in Refreshingly New Ways

God works in these mysterious and refreshingly new ways, which constantly peek my interest. I had NO interest in getting out of bed this morning with the way I felt. It was as if each arm had a little dumbbell tied on and my eyes were like looking through my iced over windshield. It was the hour to get up, though. David was awake, Mike was about to walk out the door, and Naomi had been up since 5:00am playing in her room, fully dressed. I settled into our living room chair with my tea and a bottle for David, and Kissed my honey goodbye. As if this is a good environment to have a quiet time with the Lord, I opened to what Mike and I are reading and started to read. Still feeling physically miserable. The elmo phone has been floating around this room all morning, and Naomi brought it to me about 7:15am and said, "Mommy, you have to call Oma." Oma is my mom's mother, who we are very close with, but really only call a few times a month so this was a little out of dail