Last night, when I couldn't sleep, and was in a completely angry and depressed mood, I wrote a diary entry (yes, with a pen and paper). I will include it here, out of personal necessity...followed by where I am after a good night's sleep.
Ever since June of 2008, things have kind of fallen into place, in a weird way. They at least have been planned out. I had Tethered Cord surgery. I had Invasive Cervical Traction, which promised a brighter future with fusion revision. I moved out of my childhood home, and into a condo with my mom and an apartment with my boyfriend (both part time). I kept persisting, kept working, no matter how hard it's been; taking as few days off as possible. I prepared for fusion surgery by seeking out treatment for osteopenia. I was diagnosed in May 2008, continuously sought treatment. I knew there would be some time to wait, so I planned in my head to have fusion surgery this summer, 2009. It's all that kept me going through the immense pain and neurological deterioration.
Now, I am going to a very dark place. I've learned of more and more people whose symptoms have not improved with all of the TCI treatments. Their pain and autonomic symptoms continue. Even though they've had a "perfect" fusion. Sometimes they improve for a month or two before their symptoms return. I'm having trouble finding anyone with the "trifecta" that has improved. I haven't found a single person that's found headache relief. The only success story I know of is a guy named Juan. He had minimal symptoms before surgery and got treatment within months. He did not have EDS or POTS, but he did have basilar invagination and a retroflexed odontoid. He saw Dr. Menezes in Iowa, who specializes in skull-base deformities. Dr. Menezes performs transoral odontoidectomy as part of the operation. This is not an option for me, and there's not really any reason to believe that any doctor other than TCI would be willing or able to help me any more than they can.
Worse, my bone density scan will not even be done until next fall, or maybe even next year. How do I even know if my bones are getting denser? How do I know if this conservative treatment is working? How will I be able to find out until I've already tried this course of treatment for a year.
It is a distinct possibility that I will have my next bone scan next year, and not see any improvement, since I haven't been taking a bisphosphonate. Only supplements.
My body fails me. Doctors fail me. I'm supposed to just wait - maybe they don't realize that I have to keep living this life while I wait. And all of this waiting - seven years since decompression. For what? To have another surgery, another very long and horrendously painful recovery? To walk through the fires of hell again, knowing that there may be no relief in the end.
When all of this is done, however sick I may be, I plan to get married and want to have a family. But will I ever be healthy enough to be a responsible mother? And how irresponsible would it be to pass my defective genes along? So many sick mothers with so many sick children. I've read the stories. Do I want to risk my child's life on unknown odds? Do I really want to have a child any other way? Does Gus? Could he possibly not resent me for my fatal flaw...not being able to become a mother? No. It is my curse to live with, my curse to accept over and over again. Expect less and less of myself and my life. Learn to be satisfied with less and less. Accept more pain, less joy, more time sick, less participation in life. Searching for a way, a reason to keep trying. The will is weak.
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That was last night. Today, I'm pretty much back to myself. I push forward. I keep trying. I don't know if I have anything to look forward to. But I'm still going. I can't give up. It's not an option.
