Tuesday, October 20, 2009

Post from last night

I wrote this last night, when I didn't have access to the internet:

I’ve been having quite a difficult time lately. However, I consider myself the luckiest girl in the world. This weekend, my boyfriend of 3 1/2 years and friend of 7 years became my fiance. Gustavo actually wants to be with me the rest of my life, in sickness and in health. Many of you know the kind of commitment that is with someone like me. I have been very blessed to be in love with my best friend. It makes all of this pain and sickness seem a bit more bearable, when you know you won’t have to do it all alone.
Of course, now that I have had to discontinue all of my work, I do spend a lot of time alone. Today, I officially quit teaching piano lessons, at least for a while. I have several very loyal families that are willing to wait for my health to improve. In the meantime, I am left spending much of the day alone in the house, because most people work all day. It’s amazing how much time there is to deal with when you can’t work at all. Most of that time is spent being tortured. My own body tortures me all day. My pain level has been very high. I’ve been very symptomatic, with my autonomic symptoms, nausea, and vertigo all worsening and happening more frequently. I’ve had a lot of pain in my head, including severe facial pain. I’ve also had pain in my spine, feeling like it’s being crushed like an accordion. I also have a constant feeling of a lump in my throat, causing frequent gagging. It's impossible to sit up at times. The only escape is laying flat almost all of the day.
I will be seeing my endocrinologist, on Monday, October 26th. I expect her to order a new DEXA bone scan to determine the effectiveness of my first year of osteopenia treatment. Hopefully, my bones will have improved sufficiently (with only Vitamin D, Calcium, and Magnesium treatment). I will send the results to Dr. Bolognese, my neurosurgeon in New York. I will also certainly be sending him a pleading letter, describing the worsening of my symptoms. The hope is that he will be willing to schedule a surgical revision to my cranio-cervical fusion in the very near future. I will probably have to wait a couple months, however, because my mom will be getting married at the end of November! And I don’t want to interfere with the wedding and honeymoon plans. My health (or lack thereof) tends to interfere with everything. But I’ll do my best to keep being patient. The situation is just becoming rather desperate. I sometimes wonder just how many more days I can stand this. It’s just been so long. I just don’t want to lose more years of my life to this. I need help, now.
I am frustrated that I can’t post this entry while typing it, because my current laptop has difficulty with wireless internet reception. So it doesn’t seem to work on the top level of the house, where my bedroom is. Being connected to the internet during the day would probably help me to feel less isolated alone on my bed 24 hours a day. I wish someone could help me (a lot of good wishing does).