January 17, 2013
Happy 2013 to all of you! I took a bit of a writing hiatus over the holidays, but I imagine that everyone else was quite busy as well. I am sure you didn't even have a chance to miss me! But I hope you didn't enjoy my period of silence too much. Don't sweat it, I'm not offended. Just don't let it happen again!
Not only did I take a break from my regular narratives, but somehow I managed to completely evade the hospital for the entirety of December! No doctors, tests, zip. Let me tell you, it was a welcome vacation! But January 2nd, it was back to my real world for an appointment with Dr. Wilson, my hematologist/oncologist. I don't know how many times I can say this without sounding trite, but he is just about as kind as anyone I know. I am so blessed to have him leading my medical team and looking out for me. My checkup was pretty routine; however, for unknown reasons my blood counts have been running very low the past few weeks, so we are watching them all the more attentively.
We also discussed our current pursuits; my family and I are working to schedule an appointment with yet another mitochondrial disease specialist. I am hoping to see Dr. Cohen at Akron Children's Hospital. He differs from the other mito experts I have seen in that he is a neurologist, while the other two were geneticists. Given that I have yet to find a neurologist with answers as to why I have episodes of paralysis, this is a winning point for me. Plus, I have heard wonderful things about him. Believe it or not, at about an eight-hour drive away, he is the closest mito doc to my home, making him an ideal choice as a treating physician for me. We have sent in a preliminary application and some of my records for review in order to determine whether or not Dr. Cohen may be able to provide any insight. But this process has been quite sluggish, entailing many phone calls and requests for more background information. And what's more, the waiting period before I could expect an appointment is anywhere from 6 to 18 months... 6 months isn't a terrible wait in terms of in-demand specialists, but I just find the vagueness of the phrase "6 to 18 months" to be rather striking! But it is our hope that, if they consider the cruciality of my symptoms and that I already have a fairly thorough workup, they may be able to squeeze me in at the early end of the spectrum. Dream big, right? I am not really griping, because, as you well know, I try to be all sunshine all the time. I am actually thankful that they are thoroughly investigating my medical history ahead of time, instead of waiting until I make an exhausting trip to Akron only to find out that Dr. Cohen has no help to offer. Most clinics do function in that manner, and it is exceedingly frustrating! But still, if I must be honest, it is a challenge to be patient regarding such important matters!
If and when we do finally make it to Akron, I plan to see a highly regarded palliative care team there as well. I have never been involved with palliative care before, but everyone I know who has enlisted such help says it is one of the best decisions they have ever made. Basically these teams work to provide the best quality of life for patients, aiming to achieve proper pain control, to coordinate treatments, and to optimize communication between physicians and the patient's family. Mom contacted the team in Akron, and they think that palliative care would be a suitable option for me.
One possible glitch to that situation would be that managing pain medications from a distance can be problematic. We shared this concern with Dr. Wilson, and I am thankful to say that he kindly offered to prescribe recommended medications locally. He so very much wants to help, but since mito is not his expertise, he doesn't want to make any major decisions in that realm, fearing that a wrong choice could prove to be harmful.
So if everything falls into place, I could have a mito specialist and palliative care team in Akron, with Dr. Wilson overseeing things here. I am very good at weaving plans in my mind, thinking that everything will be much better if I can achieve those plans. Sometimes my family and I manage to attain such goals, while inevitably there are other times that they simply fall flat in what seems to be a complete failure. And although thwarted ambitions are naturally disappointing initially, it isn't uncommon that I can later reflect on them and realize that, had things gone as I had intended, the results could have been disastrous. So even while I am avidly scheming in attempts to find help, I am earnestly trying to remember that God has the perfect design for me. I am seeking His guidance, and I surely hope that my plans align with His!
Now, don't sneak off before I give a quick holiday recap! My Christmas was nothing short of blissful. I haven't been well enough to attend church services in quite some time. But I always loved the midnight Christmas Eve service. After all of the crazy bustle leading up to the holiday, going to church on Christmas Eve seems so peaceful, yet exciting at the same time! Although it wasn't quite the same, I did listen to a Christmas message at home.
Krista, Tim, and Lulu spent all of Christmas Day at my house, and our family enjoyed a relaxed celebration of our Savior's birth! In fact, I can't recall a past holiday being quite so laid-back... It was simply delightful. We have a tradition of wearing our pajamas for the entire day.
Well, except my dad doesn't participate in that tradition. Larry Frey must have too much dignity to lounge around in his jammies past 8 am. He probably wouldn't even want you to know he has jammies! So although Dad isn't in the picture I posted, you can imagine him wearing the pajama pants that I gave him for his birthday; they are a rather festive shade of aubergine, adorned with darling English Pointer dogs all over them. Are you getting a nice visual?
Anyway, I received some lovely gifts, but I was particularly psyched about the present I gave my mom. When my mama was a little girl, she had a favorite Christmas decoration, a set of salt and pepper shakers that are a boy and a girl kissing in a sleigh. She liked to make them kiss, or if she was feeling mischievous, she would place them back-to-back and pretend they were fighting. And then they would kiss and make up, and so on and so on. This would be a charming little holiday anecdote, but sadly these beloved salt and pepper shakers were broken sometime through the years. I knew how much she liked them because she has held onto the broken pieces. So, being a dutiful little elf, I had been searching for a replacement for a long while, Googling any combination of words that I thought might discover this rare treasure. And just when I considered this hunt to be hopeless, I stumbled upon one set of these precious salt and pepper shakers! It made my Christmas extra special being able to give this gift.
And now my favorite day of the year has come and gone once again. I am greatly missing my beautiful Christmas tree! But my room remains unparalleled in its shimmery Christmasy splendor, extending the festivity for a bit longer! The weather has been positively frigid as of late, but I actually love winter. I find great delight in hibernating by my fireplace, reading a good book, and cuddling with my Double Doodle! It used to be that each evening Alice Eloise would have a Frenetic Rapid Activity Period, but I fancy referring to it by its acronym, "FRAP". It is a common occurrence among puppies in which they uncontrollably zoom around any open space available for approximately five minutes, and upon completion collapse in a jolly state of exhaustion. I am ever so happy to report that, barring occasions of extreme excitement, such instances seem to be behind her, leaving her quite content to hibernate in peace!
Do you make New Year's resolutions? I have both New Year's resolutions and hopes. The difference between the two is that I can, more or less, control the outcome of my resolutions, but my hopes I give up to God to determine whether or not they will come to pass. Last year I resolved to stop buying nail polish, as my collection is what I would call adequate, and others would likely call superfluous. I recently watched a movie in which Winnie the Pooh promised to put an end to his honey-eating ways in the coming year. This resulted in a melancholy Pooh Bear, and so thankfully he returned to his cherished honey habit. This is a pretty fair analogy: Pooh is to honey as Sarah is to nail polish. Just go with it, guys.
This year I will share some of my resolutions and hopes with you. I resolve to grow in my faith through more in-depth Bible study (a continuation of last year's resolution), to improve my writing with practice, and to achieve service dog status for my sweet Doodle Alice Eloise! My hopes are, naturally, to be healthier by the end of the year, feeling better and able to do more of the things I love! I have become very adaptable, learning to be happy despite unpleasant circumstances. But I do still miss many things that I could do before I became so sick. My favorite day of the week was Saturday; I would wake up early in the morning to go horseback riding, and then come home and watch an American Kennel Club dog show on television! And I really miss carbohydrates! If I can eat a blueberry muffin next Christmas morning, I would write a song about it. In the meantime, I am a cheerful girl... And that is largely because I know that God can overcome anything! And that makes carbs seem attainable, wouldn't you agree?