No, not bitchin’ as in “Dude, your new Prius is totally bitchin’!” I mean bitchin’ as in “I’ve had a long day and I feel like bitchin’ about it.” I rarely engage in bitchin’ about my day except to a few lucky individuals (you know who you are). Today, however, just feels…UGH.
Grace saw Dr. Awesome today for her pre-summer check-in and medication check-up. We enganged in the usual chitchat. Does Grace need any refills? How has she been doing since the increase in her Neurontin? What are the summer plans? Everyone is almost overly concerned about Grace and our summer plans. Should I be afraid?
Well, Grace will have skills training this summer. A therapist will come into our home a few times a week and work with Grace. Skills training is a bit like Phase II of therapy. Therapy gives you a direction to go in your life, shows you a new way to think, and gives you homework to do. Skills training provides you with the help you need in the moment. It begins where therapy stops. Grace has had a lot of therapy, but she forgets what she knows in the moments when she requires that knowledge. So, skills training will be very good for her. She will also swim. Swimming is very good for her. This discussion led to another topic. Her odd gait and ataxic-like coordination issues.
Grace has an uncoordinated gait at times and muscle tonality issues. She also struggles with swallowing from time to time. It’s worse when she’s tired. When Grace grows weary, her gait transforms into that of Shaggy from the cartoon “Scooby-Doo”. I would say that it’s comical if it weren’t so strange. Combine these issues with her headaches, her issues with hearing music and smelling odors that aren’t there, and Dr. Awesome insisted that she thinks something else is going on with Grace outside of her mental health issues. She thinks that it’s either epilepsy or neuromuscular in nature. We need to go back to the neurologist and also get an OT consultation. Can you tell how thrilled I am to hear this? Why can’t she just have schizophrenia? Hmph.
Anyway, I nodded my head and felt tired upon hearing the latest medical advice. There’s too much going on right now in my life. I put it aside, and we headed home. I came home and found some obscure $700 bill from some random LLC that I did not recognize. I started calling people to inquire and no one was around! I kept getting the same message: “You’ve reached Miss Talking Head in the billing department. Leave a message.” I tried calling five people, and no one was answering! How was this possible?! I finally reached a person who was able to give me some information, and it appeared to be a billing error. No one knew anything for certain. An hour later…I’m talking to people who all claim not to bill for the doctor that is billing us but who never actually treated Grace. Who charges $700 for not doing anything? Apparently, this doctor does (I tagged this doctor under “stupid people” on my blog just because I can).
I told you I was bitchin’.
Nothing is solved, but I’m done slaying dragons for the day. I don’t know what normal is anymore, you know? I feel like it might be alarming if a doctor told a parent that they suspected epilepsy or a neuromuscular disorder in their child. For me, it just felt like one more thing. Like a hassle. I think a doctor could tell me that Grace was going to develop Porcine Syndrome wherein she would develop a pig’s snout which would soon be followed by Equine Syndrome wherein her feet would turn into hooves soon to be followed by Caprine Syndrome wherein she would grow a ram’s horn. I’m sure I would say something like, “Good God! Really? That’s a thing? Grace will turn into…uh….Pig Girl? No, wait, Pig-Horse-Goat Girl? That’s terrible! What do we do now? What steps do we take?” And, that would be that. Because, in truth, that’s essentially what’s been told to us this year. “Your daughter is deeply depressed. No, wait, she’s bipolar. No, wait, strike that. She’s schizophrenic, and she might have epilepsy or a neuromuscular disorder. Wait…we may never know, but she looks weird. You should get her checked out.”
In the meantime, I have to keep a log of Grace’s mood lability, headaches, and the days that we use Seroquel. Dr. Awesome would like to track Grace’s instability. She is in research after all, and she is watching her for pure schizophrenia to emerge since that runs in my family.
I’ve got one thing to say today: My family genetics are totally not bitchin’.
I must go eat something very fatty and sugary now because you know what else isn’t bitchin’ today? My coping skills. Now…where did I leave that book I was just reading…50 Shades of…