April 21, 2012

April 21, 2012

So much has been going on lately! I am not quite sure where to begin, so I suppose I will just babble until I sufficiently cover each topic! (Wow, if I read that sentence in someone else's writing, I most likely would quickly close the window and go on with my day elsewhere. But please do read on! I promise to attempt some semblance of organization.) Recently I traveled to Kansas City to see my infectious disease doctor. Dr. Brewer is one of the most caring people I have ever met. Right now he is having many of his patients tested for toxic mold exposure, as I have mentioned before. He has just begun treating some of his patients for this, but cannot yet testify as to whether or not these people have seen any improvement. Dr. Brewer respects my wish to hold up on anti-fungal treatment due to my liver issues for the time being. A couple of weeks ago I had my pain management appointment in St. Louis. I wish I had some groundbreaking news to share, but it was pretty lackluster. In the scheme of pain management, there is a fairly wide array of treatments out there. But I am limited regarding medication options, as I don't absorb oral medications properly due to my gastroparesis. I am also very prone to experiencing awful side effects. I have been interested in spinal cord stimulators and pain pumps, but the doctor shook his head at those. I am hoping that is just his opinion, and perhaps someday these treatments might be feasible for me. This doctor is a very kind man, and I really do like him. He just didn't have much to offer for my case. And so I am even more anxious to see Dr. Schwartzman, the RSD doctor in Philadelphia who specializes in ketamine infusions. My family and I have had much to consider regarding this trip... Since I often have paralysis with anesthesia, it wouldn't be too surprising if Dr. Schwartzman finds me ineligible for this treatment, as ketamine is a form of anesthesia. But after waiting for this appointment for two and a half years, we just couldn't cancel! I really, really hope that he will feel comfortable with me trying an infusion under his care. But if not, being an RSD expert, he may have other treatment advice to offer. My parents and I will be leaving for Philadelphia tomorrow! If you could please remember me in your prayers, it would be so very much appreciated! Adding to the concern of travel are these confounded daily fevers! Last week I landed in the emergency room. My fever hit 101.5, and 101 is the undesirable magic number at which the doctors require that I go to the hospital. I was pleasantly surprised, though, as they allowed me to go home that same night, rendering my duffel bag full of hospital survival necessities unnecessary. Before my HLH diagnosis, I was never discharged from the hospital until the fevers resolved. But this was actually the least stressful ER trip I have ever had! The doctors and nurses were all excellent. I arrived around 6 pm, and, after drawing blood for cultures and administering a precautionary dose of IV antibiotics, they had me out the door, on my way home to a cuddly Doodle puppy by midnight. I did have to return to see Dr. Wilson in the hematology/oncology clinic. They drew blood yet again for more cultures, and also sent some blood to the HLH docs in Cleveland. As for now, though, the fevers remain a mystery. And regarding those pending mitochondrial DNA tests that we have been so eagerly awaiting... Whenever the tests were sent away in October, we were informed that there would be a lengthy waiting period, that we could expect results by April. Mom called the company a couple of months ago to make sure that all was going according to schedule. Again, we were assured that we would receive the report in April. So here we are... In April. Mom called yet again to see if my test results were forthcoming. Their response? The tests would return in October! Ugh, the frustration! We are quite impatient for these test results, hoping that they will provide helpful answers. The company pledged that they would put my DNA on the fast track, whatever that means! The non-medical chapter of my life is scarcely less crazy! Due to the renovation at my own home, I have been living at Krista and Tim's house for the past two weeks, along with my parents and Alice Eloise. Alice is having a blast here with her cousin Lulu. I can't speak for Lu, but unless I am much mistaken, I believe I have discerned a look of annoyance in her eyes from time to time. Alice is every bit the little cousin, never allowing Lu to forget her presence! But Lulu Belle is as sweet (and fluffy) as a lamb, a most gracious hostess indeed! She must learn from her dear parents! They are being very generous in sharing all of this quality bonding time with us. I am quite lucky to have such a wonderful sister and brother-in-law. The renovation was so spur of the moment, we are finding ourselves facing many decor decisions that need to be made quickly! But this whole slumber party thing is going very smoothly. With my being a new farmer, Krista and Tim have let me keep my seedling garden in their basement! I was so excited when my seedlings began shooting up toward the sun and the sky (or artificial light source, in their case), but now, I couldn't say for sure whether or not they are flourishing. I'll keep you posted on this scintillating process. Speaking of funny looking green things, our pet frog, Ellie, joined the slumber party a few days ago. Ellie became a member of the family when I was four years old. Krista is allergic to dogs, you see. In fact, I told my parents I would bark until I had my own dog. I held my word, barking until the age of nine. But in the meantime, they tried to appease this longing for a pet with the aforementioned amphibian. Mom didn't want to traumatize my sister and me by giving us a fish, only to have it die a week later. Ergo, we received our first pet, Ellie the frog. If the Grow-a-Frog website is accurate, I believe she (or he, as we discovered much too late after bestowing him with a feminine name, the poor guy) holds the record as the oldest Grow-a-Frog ever! We would hate to ruin that due to accidental elimination via renovation, now wouldn't we? Not to worry, the precious little mutant is safe and sound! And on that slimy note, I bid you "adieu"!

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