Sunday, January 6, 2013

Internet research

Internet research for me is usually a stupid thing...especially when I start doing it after midnight, in near-darkness (I have some candles lit and my computer screen, that's it), alone...you get the picture.

Tonight's research revealed yet another sign that I could have mosaic turner's syndrome. Stupid me after watching a Dr. Phil episode on youtube (laugh all you want...) that talked about a woman with PCOS who was obsessed with trying to have a child decided to see if anyone had followed up my post on the carepages Mosaic Turner's syndrome board (the answer, incidentally, is no). Well...I did a little reading, and the phrase AFP test-which I know from my past courses to be a test done on just about all pregnant women at various points during their pregnancy-came up. I know that when my mom was pregnant with me that there were some concerns with a certain blood test level-that something was elevated and indicated a risk of things like neurotube defects. My parents elected to not have further screening, because they said that no matter what the result-mental disabilities, spina bifida etc-that they would love the child God had given them...so they didn't want to put my mom/me at further risk through testing by amniocentesis. Now...the AFP test DOES test for things like neurotube defects. I think that's the one that my mom had that was elevated (I wish I could ask her right now, I doubt my dad would remember, although I just may ask him). If the baby has Turner's syndrome-of any form, apparently-the AFP test during the second and third trimesters can be elevated.

The past week and a half has been very stressful. More stressful really then last year around this time when I was waiting for tests on my heart and having to defer things and wondering if I would ever get back to normal and be able to be a student and what-not. Because of my rather, well, public display of symptoms that practically made my wind-ensemble-subbing-for-orchestra-director phone 911, and because I had to defer things...in a small faculty...I had a lot of support. I will never forget the professor-one of the ones that I had to defer an exam with-coming out of his office to check on me and find out how I was doing when he heard my voice talking with K, the professor I mark for, and offering support. And this is a professor that I typically wouldn't really think of as that supportive or anything like that, very fair, but pretty strict and his courses are not the easiest courses in the world. THAT is the type of faculty that I am in.

If I haven't even faced up to telling my dad and my sister yet...

My friend B, who is absolutely amazing (in all ways), was the first that I told about the mosaic turner's possibility. Her words of wisdom have helped me through all of the tough situations I have been through since meeting her...during my second year of university, which for anyone who has read my blog for a while knows, is when my mom was diagnosed with cancer. Anyways...I mentioned that I'd really been having a hard time the past few days, having either headaches or stomachaches and disturbing dreams. Her words exactly were "well NO ONE has ever said that what you have gone through and continue to go through it easy in any way.
You are handling an incredibly stressful situation with an immense amount of courage, poise and grace.
you are an inspiration to everyone who knows you, headaches, tummy aches, nightmares and all."

Well. I certainly didn't feel like an inspiration at that point. I felt a bit like I was starting to fall apart again, taking tylenol or advil almost everyday, having a day-long stomachache that was so bad and so strange that if it hadn't resolved, I honestly would have gone over to emergency or at least phoned up our 24-hr nurses' line, because I was weirdly bloated, felt like I could feel strange things when I gently touched my abdomen (remember also that I am quite thin, so I can sometimes feel things...), and it wasn't really like any I've had before...I sort of know my stomach pains, I guess I've had them often enough. Enough to know the 'danger' ones and the ones that are annoying, but not potentially embarrassing. My heating pad has been one of my best friends over the years.

I don't know. I think I may talk to my dad briefly tomorrow just to ask a little bit more and see if he remembers what type of test my mom had...either that, or I'm going to try to dig into the filing cabinet and see if I still have her medical records from the time about that-she kept somewhat detailed yet brief notes on appointments for a time...although she stopped when I was very small.

I wish that 2-4 months wait was up. I just want to know so that I can get on with things and know what my future may look like.

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