Tuesday, April 30, 2013

Snow. Again.

Yes, only up in the prairie provinces will you see posts about snow on April 30th/May 1st. It's snowing. Again. We FINALLY lost all of the snow (well, except for the city dumping site, which I have heard actually often never fully loses it's snow) and here we are getting MORE snow. At first it wasn't staying, just melting, but now it IS sticking a bit. FUN (*sarcasm*).

But, what cannot be cured must be endured.

Charles Ingalls, be proud.

Monday, April 29, 2013

Hoping that tomorrow I feel better. Today has just been a tired, symptom-ish day. I slept close to ten hours but still woke up really tired (meaning I forced myself to get up at about 8:45 this morning). I've been feeling tired, dizzy-ish, some breathing issues, slightly blurring vision (found myself squinting), feeling a bit shaky, especially when doing stairs or standing up, and my kidneys have been working overtime for the amount of fluid I've had today. Well, and my right ear is still bothering me a little bit. I think the external ear got a bit irritated by my earbud headphone the other day. It's mostly better but still a little bit painful if I bump against it.

Time for bed I think. The good news about today is that I took my calcium and vitamin D!

Other not so good news? The online university system that has the link to check our grades is down. Irritating!

Sunday, April 28, 2013

Taxes=done

One more thing off my stress list. Fortunately, my best friend B's boyfriend is studying to be an accountant. He got them figured out in just over an hour, and for only $30 and cookies. Apparently my chocolate chip cookies are his absolute favourite. Happy to oblige.

Still included on the stress list is:

-having to book an appointment with my doctor to go over a multitude of things, including booking a bone density scan
-having to find and book an audiologist appointment to get a baseline
-having to book an appointment with my optometrist to have my eyes dilated to make sure that there are no tears in my retinas (the reason she wants to check is because I am so ridiculously near sighted)
-REREGISTRATIONS and the mess of that. Figuring out my teaching schedule for next year, and the mess of that.
-WAITING FOR GRADES TO BE POSTED
-Major Area Paper
-Ultrasounds-kidney, pelvic, and according to my Turner's checklist, I need to get an echo done again-says that I should get one yearly.

...and on and on...

But at least the taxes are finished.

Tuesday, April 23, 2013

Interview with Cliff Williams

Today was a day that I knew would be meaningful, although emotional, for two reasons:
1) This evening was the first emotions group meeting at the Women's Health Clinic as part of my eating disorder treatment.
2) I did an interview telling "my story" from back when I was 17 to an author named Cliff Williams, who is collecting first-hand accounts of suicide attempts, survival etc.

This is an emotional time. Period. It's the winding down of my degree. It's the learning-to-live with the knowledge that I have Turner's. It's...well...a lot of things.

I was SO tired during the group tonight that I was really introverted for most of it, even more than my normal. I just wanted to get home and crawl under my blankets and perhaps cry. Although reading on the bus and listening to Chopin helped a bit. I'm currently reading "The Kite Runner", which is quite interesting, although definitely filled with several sad parts.

Sometimes, it's hard encountering ANYTHING because it reminds me of, say, my mom. Some days it's STILL hard to believe that she is gone.

Life...

Random Ramblings

Random ramblings occur when one is finished all their exams for their degree. Random ramblings occur after leaving the house at 7:30 in the morning and getting back at 12:30am. Random ramblings occur when one is listening to Wicked on their ipod...

Random ramblings...
An interesting day...
A beautiful recital by a beautiful flautist friend of mine...
My first time in a bar that really seemed like a bar...
My first sip (about 1ml if anyone is interested) of any alcohol. I really don't think that counts :)
The latest I have ridden a bus home...
Celebrating several things with friends...my friend K's acceptance to Oberlin for his Master's degree...my friend L and C getting their offer on a house accepted...my friend L's fourth year recital...my friend M's last exam...

I have some special friends.

And some special mentors/professors at the faculty. Serving on the Musicology search committee is certainly interesting. We conducted our last interview today, but could not reach a decision, so we are going to be meeting again on thursday.

Deciding that you will give your dad an early father's day present and buy two tickets to see The Mikado together on wednesday evening.

Random mondays.

And now to sleep!

Wednesday, April 17, 2013

...Depressed...

That is today's title, because that is how today has been. I stayed up WAY too late last night because I was upset then, fortunately I connected with my friend D, and my friend C online, and that helped...a bit...

But staying up late messes up the next day. And I've had some pretty decent problems with eating both yesterday and today. I know that that doesn't help me in the feel-less-depressed mood situation...

And there is another exam on friday. And I'm trying to get my classes rescheduled...and a billion other things or so it seems.

And then my conversation with my friend SK online this morning. Let's just say it was unsettlling X 10 000. She's talking suicide, and she's out three provinces away from me. She's what I would term medium/moderate risk. But then she starts asking me to promise not to tell people. Well, how am I supposed to deal with that?! I KNOW that I can't make promises like that, but I also want her to feel comfortable telling me as much as she can because she feels like she has very few supports right now. It really puts me in a rock and a hard place. I'm very tempted to phone up her college and suggest that someone approach her, but I think that she would still figure it out even if I told them to make sure that I remained anonymous. And I'm not sure whether it would do more harm or good if people knew. She might be more protected, but it might also push her over the edge, especially if she felt that she couldn't trust me and then felt like she had lost every single support. GAH if only we weren't three provinces away.

I've felt like I've been moving like molasses and shaking a good chunk of the day. Not how I wanted to have my wednesday, because instead of studying, I've been feeling miserable both mentally and physically.

I think I smiled once today...

Seriously, that is probably the number of times I managed to smile today. Once. When my friend D and I were talking online, and he mentioned in his logical way that the snow would NOT be here in July for our birthdays. It certainly feels like that.

I had my History of Antisemitism and the Holocaust exam today. Not quite sure how it went except that my wrist is hurting now. There should be some rule against three hour long exams. I don't think I'll do quite as well as I did on the midterm, when I got the third highest mark in the class. I really hope that I get at least 75% (B+) on this exam so that I can get an A in the course.

I don't know. I've just felt well, sad/upset/something today.
Like maybe things are really hitting me. That I may have no fertility, even though I do cycle right now on my own, despite it's weirdness. That I might never be able to have children physically.

Even since I was a little girl, I've felt like it was part of God's plan for me to have children of my own. Yes, adoption is always an option, but I've always felt that it was a part of God's plan for me physically to have children. Now, genetics is telling me that that's quite unlikely.

I got the blood and urinalysis results back-most of them that is. Still waiting on the antibodies results. Turns out that for the 'phase' I was in, my hormone levels were 'normal'. However, it's just a snapshot. I don't know whether I am going to need to go onto HRT, such as estrogen-progesterone birth control pills or not. I don't know whether that would help me to feel better or not. I don't know whether that will make me feel WORSE or not.

Yesterday, I had an intense feeling of missing my mom. This is one time when I think I'd want to talk to her. But I can't. And THAT is one thing I know is not going to change.

Monday, April 15, 2013

Snow. On April 15th. And a three hour power outage

Yes, that is what I get for living in Canada. Snow. About 10cm. On April 15th. And a three hour power outage this afternoon which meant no tea, no heat, and no hot lunch for my afternoon studying.

Other than that, it has been another day of adjusting. My body responded appropriately today with something it should do, which meant a dose of advil and studying with the heating pad this morning until the pain went away. I normally don't take medication just for that, but I knew that I needed all my brains focused on studying for my exam tomorrow. I'm still dazed to say the least. Blindsided, whatever have you. I haven't felt this dazed/blindsided since my mom was diagnosed with cancer. Not even when I had my heart defect diagnosed.

Studying time...studying time...more studying time...

You know you have a true friend when...

He tells you that "I spent several hours reading up about Turner's Syndrome...wikipedia, webmd, all that..." when he chats with you on facebook.

I wasn't expecting that, but it definitely touched me. Of course, I do know that this also relates to his natural curiosity. If a friend told me that they had a condition, I would read up on it too if I didn't already know about it! But I certainly didn't expect to hear "Several hours", and definitely not during exam time. To say that Turner's Syndrome is a bit difficult to talk about with men is an understatement. It was quite hard telling my dad that I could have various anomalies with my reproductive system. Not just could, but likely. That I could go into menopause at anytime unless I'm treated with estrogen and progesterone. Of course, I didn't mention this possibility to my male friend, but I'm guessing that he read about all those wonderful possibilities!

That's all for tonight. Finished the first review for my exam in History of Antisemitism and the Holocaust this evening...approximately 150 pages of notes from class to go through.

Friday, April 12, 2013

Day Two

Day two of knowing that my genetic code is abnormal.
Day two of knowing that I am lucky...very lucky...to be alive (stats are that only 1-2% of girls with Turner's make it to full-term)
Day two of having answers...but just as many more questions.
Day two of trying to live a normal life while wondering what my genetic code has done to me.
Day two of feeling even more indignation over "termination for medical reasons".

I don't know what my bones are like.
I don't know what my kidneys are like.
I don't know what my reproductive organs are like.
I don't know what my hormones are like.
I don't know what my blood sugars are like.
I don't know if I will ever be able to have children.

There are lots of unknowns...and then some knowns.

I know that I am one of a small group of girls and women who survive.
I know that I am lucky to have had any sexual development at all.
I know that I have good support from my friends.
I know that my sister was lucky to have a little sister to torment growing up.
I know that my dad was lucky to have a daughter to teach to ride a bike (slowly, but surely, when I was almost eight years old), and to push on the swings for hours, and sing "Yellow Submarine", "Jesus in the morning" and "Six little ducks" (among others)...and now one who keeps him in line!
I know that my mom was lucky to have a daughter to cuddle with and sing "All through the night" and "In the Bleak Midwinter" to when I was little, and to make ensure milkshakes, sit in silence, and be an advocate for when I was 19 and 20.
I know that I am lucky to have found out while I am still 'young'.
I know that I am lucky to have medical care, and medical care of the 21st century in Canada.

There is so much more on my brain. It's still very strange, despite knowing-truly-for several months now that I had Mosaic Turner's Syndrome, and suspecting at least somewhat that I might have Turner's since I was about 15. I guess all big life events are like that. And this is a big event...life changing. Life answering...and life questioning.

Thursday, April 11, 2013

It's positive-I DO have mosaic turner's syndrome

Although I was suspecting it all along, my brain is still reeling a little bit from my genetics appointment today. I do have low-level mosaic turner's syndrome. My exact karotype is 45XO (4) 46XX (26). What this means is that they analysed 30 of my blood cells, and of that 30, 4 were missing one of the X chromosomes. The other 26 were normal.

So what does this mean? We already knew that I had some of the classic signs of the disorder
-short stature. My height is EXACTLY the average height for untreated Turner's women (4'9)
-my bicuspid aortic valve (a common heart defect in those with Turner's)
-short fourth and fifth metacarpal bones.
-menstrual irregularities, although not crazy
-'big feet' at birth. Which is strange given that through childhood, my shoe size was always appropriate for my height.

What we don't know yet is if I have anything else 'funky'. I had a LOT of blood work done today and a urinalysis. Including in the bloodwork were hormone panels, glucose, thyroid antibodies, kidney function levels, electrolytes and more.

What I have been referred for...renal (kidney) ultrasound, pelvic exam and ultrasound, bone density screening, and referral to a fertility clinic. Maybe other stuff in there, I can't remember everything. My friends, when I texted them the results asked "So what happens now?" and my response was "A bunch of tests!"

Thankfully, there is support out there. Right now, I have a great group of women in my life that I have been turning to. I managed to explain things to my dad, and he seemed to understand, even though math and science are not his strong subjects.

A bunch of the quirky things of my life have been answered. Of course, I'm ticked that this wasn't figured out when I was a little girl, because if growth hormones had been initiated, I likely could have reached 5 feet. It may not seem like that much...but it's difficult being the size of a junior high student when you are an advanced university student!

Knowing is empowering. Turner Syndrome Canada has a PDF that you can take to appointments to know what you should be tested for, and when. I definitely bookmarked it!

Only about 2% of girls with Turner's Syndrome make it full term. This was in the days BEFORE a lot of 'termination for medical reasons' occurred. I am MAD BEYOND BELIEF whenever I hear about 'termination for medical reasons' when it comes to Mosaic Turner's Syndrome in particular. There are WAY too many myths out there (ie, girls with Turner's are retarded-this is INCREDIBLY rare) and it's literally killing girls. Girls who could become women like me.

Wednesday, April 10, 2013

A day of lasts...and one first

Today was a day of lasts
-Last orchestration class
-Last time catching a 7:10 bus to get to an 8:30am class...at least for this year
-Last psychology midterm
-Last day of classes for this degree
-Last day reading "The Anguish of the Jews" by Flannery (for History of Antisemitism)
-Last day not knowing if I have Mosaic Turner's or not

And one first: having a full backpack that included a tambourine and woodblock that made so much noise (because my backpack was full) that someone looked at me strangely.

Time for bed with "A History of the Holocaust: From ideology to annihilation" by Botwinck. I do like to depress myself before falling asleep obviously!