March 29, 2012
There is only one word to describe the goings-on of life at the Frey house right now: KOOKY! And I believe it is getting kookier every day. But I will leave you in suspense for a few moments.
First, I will report my latest medical news. This week I had an appointment with my wonderful GI doctor, Dr. Rubin. Nothing of too much consequence took place. As always, there is much concern over my nutrition. We are considering adding more calories in my TPN (IV nutrition). It would be wonderful if we could improve my nutritional status, but the proposition of altering my TPN always gives me the shivers. Adding calories to my TPN has been known to cause my HLH to flare in the past. I have been having daily fevers for 5 weeks, gradually creeping up to a higher level. Fevers can be an indication of HLH, so this increases my reservations. But it never seems to be the right time to take the plunge and boost the calories. So we might just need to proceed with this plan now… Very cautiously!
Doctor days are always physically taxing for me, but I made a friend on the way to St. Louis this week. I have a little game I play in which I smile and, when socially appropriate, wave to random people. If they return the gesture, we both win! And if they don’t, well… That just means that person is a schnickelfritz. Well you know how some businesses exploit employees desperately in need of money by paying them to shamelessly frolic about near the roadside, dressed as the respective enterprise’s mascot? Well as I wearily rode to St. Louis this week, a young gentleman in full Statue of Liberty attire very heartily recompensed my smile and socially appropriate wave. So Mr. Liberty, I thank you for making such a dreary trip brighter!
Any-who. This upcoming month will hopefully open up some potential treatment options for me. Along with my persistent fevers, my pain has continued to intensify. I will be seeing a pain management doctor in St. Louis in a couple of weeks. This doctor performed a few nerve blocks in attempts to reduce my pain a while back, but after my extended medical trip to Florida last year, I never followed up with him. I am hoping that we will have better luck with pain control this time! He is a very kind man, so I know he will do his best to help me.
On April 23rd I have an appointment in Philadelphia with Dr. Schwartzman, an RSD specialist. He is in incredibly high demand… I have been awaiting this appointment for two and a half years! He is an expert in treating my pain condition, RSD, with ketamine infusions. My neurological testing did not reveal any hints as to why I tend to have paralysis following anesthesia. Our most promising prospect at cracking open that mystery lies in my pending mitochondrial DNA testing, scheduled to return in April. Because of the paralysis, I do not know if Dr. Schwartzman will be willing to treat me. But as a leading specialist in RSD, he may possibly be able to lead me to a proper treatment. I hope.
At the beginning of next week, I will see Dr. Brewer, my infectious disease doctor in Kansas City. If you remember from my last post, I had a CT scan and blood work done to determine whether or not I have a systemic fungal infection. Fortunately both tests came back negative. However, the previous test that Dr. Brewer ran showed that I have without doubt been exposed to dangerous mycotoxins, possibly while I was away at camp. It will be interesting to see what Dr. Brewer’s thoughts are about this finding.
And, believe it or not, it is the thoroughly unsavory topic of fungus that allows me to segue into my explanation of the aforementioned kookiness. As per Dr. Brewer’s recommendation, my family contacted a fungus professional, Fungus-a-Mungus to be exact. (Say it out loud. Trust me, it’s fun.) Through this contact we learned that mold can unknowingly occur in a home through various sources. Testing revealed that a yet to be identified leak in our kitchen has caused some damage. While not overly concerning for a healthy person, living in this environment can be very dangerous for someone as immunosuppressed as myself. And so it has been advised that we get me the heck out of here and renovate as soon as possible! Now we have begun the chaotic process of packing up nearly everything we own, as quickly as we can, so that the revamping can commence. We will be having a colossal slumber party at the home of my sister Krista, my brother-in-law Tim, and my Labradoodle niece Lulu. Alice Eloise will be thrilled!
On a lovelier note, I just adore Springtime! I have always found much delight in flowers. One of my dearest friends calls them “God’s paintbrushes”, a very apt description in my opinion! Who except the Lord could design such beauty? I am very excited, as in the next few days I intend to undertake my first attempt at planting my own seedlings. I love the show “Green Acres”. Oliver’s speech about leaving the rat race of the city to move to the country to watch the plants shooting up toward the sun and the sky always tugs at my heartstrings.
And Little Miss Alice Eloise is enjoying her first Spring! Our neighbor has been so kind as to allow us to use her fenced back yard so Alice can run and play! We have had so much fun doing this. Now that the weather has warmed up, we have also been doing some serious work on remedying her carsickness. As long as bologna or Velveeta is involved, we can officially sit in the parked car on the driveway, rocking out to Michael Bublé’s Christmas album, drool-free. This is progress! We will attempt driving down the street soon.
The awkward thing about writing journal posts is coming up with suitable salutations and farewells. So I will take a note from those darling Von Trapp Family Singers and use a variety:
So long, farewell, auf weidersehen, goodbye!
Ugh. I watch too many silly movies!
