This blog is small glimpses into my heart and soul - attempts to be transparent with friends, and sometimes, to myself. This is my safe place, where I can come and be purely Ness.

Family: If you found your way here, please do me a favor and don't poke through my closets, ok?

Wednesday, May 18, 2011

Finishing New York

(This is a post I began while we were still in New York. I'm going to try to complete the thoughts.)
It's been a long day again today. We didn't sleep very well last night. The single king sized bed (eta - when rearranging the bed for our second night, we realized that this "king" bed was about a foot shorter than our "king" bed at home. No wonder it felt so small) didn't really fit the three of us and Boy ended up spending a large part of the night on the floor. We were also so overtired by the time that we made it there that we had trouble falling asleep. So we weren't really ready to get up when Dune started bouncing on us at seven. So began our first full day with Boy's parents.
It was a very bouncy bed!
A little background - I love Boy's parents. I know they love us. But, it's like they are from a different culture. We simply don't speak the same language and even simple gestures have entirely meanings to each of us. They really don't get why we choose to go barefoot, that Dune and I can't eat milk products, why we prefer to avoid chemicals, the way we parent, and more personally - our personal expressions (eg. tattoos, no suits, despite the the fact that Boy is a pastor), and my very particular taste in food.
I fall into the picky eater category, and I know some people (like the IL's) see me as just being difficult, but it's really not that. It's truly difficult for me to eat other foods. I try occasionally. As I've gotten older, I've pushed myself to try things that weren't on my "normally eat" list and some things that were way beyond that (food is not supposed to be foamy and green. I don't care.) But, when it comes down to it, there just isn't a huge list of foods I enjoy eating, and that list got significantly smaller when I took dairy out of my diet. I know that this makes life difficult for others (try having me over for supper), and I always feel horrible about that, but there are times when I would truly prefer to go hungry than eat certain things. Not too long ago I read an article about highly sensitive kids that made me realize my food preferences were part of my sensitive nature, that it was actually "normal" for me. It doesn't really make life any easier, especially when dealing with people who see it as more of a character flaw, but it was like this little feeling of freedom to learn that.
So, mealtimes were stressful, not at all helped by the fact that Bug has a habit of taking off his shoes the moment he enters a building. (oh no, barefeet! how horrible! whatever shall we do?!) Activities had stressful moments since we all had different ideas on how and when to do things. And, 75% of all interactions involving Bug were stressful. Please don't ask my son what he wants to do if we aren't actually going to do it. If you want him to answer a question, give him a moment to think and respond, don't just keep rephrasing the question every two seconds. Don't tell him something might happen that you know won't. Don't say, "maybe there'll be pony rides" when it's highly unlikely. Don't tell him, "tomorrow we'll do this exciting thing," he doesn't understand tomorrow yet.  And, above all, DON'T step over my parenting/discipline and do things your way. If I am right here handling the situation, you don't get to step in. Bleh. I'm getting tense just thinking about it, and it was weeks ago.
I hate conflict, so we never actually addressed most of these issues (Boy touched on the outright lying to Bug), we just tried to parent around them. I don't really know what was the best way to handle it, although if there had been more than two times they overrode my parenting, we would have had that discussion, because even once is really not okay.  We will have to see what happens when we get together in the summer...
Bug enjoyed most of the trip - seeing the dinosaurs, playing at the Children's Museum, watching the polar bears at the zoo, enjoying his first hockey game on tv (how do I have a sports child?), but at the same time he wasn't so sure about this staying in a hotel room business and asked at least once a day to go home.
Of course, the whole point of this trip was a stressful one. I don't think I ever mentioned, but we went to NY to meet the IL's because my father in law was there to do some testing at Slone-Kettering's cancer center. He has melanoma that has spread to his lymph nodes and liver. His current treatment is chemo, but it generally has very little effect on this type of cancer. If he qualifies (and he does, we just found out today!), he will be able to receive a new drug that is just finishing it's trial phase. It's likely not a cure, but would make life better and longer for him. So having this test and result hanging over everyone added to the stress of the occasion. (one of the reasons we didn't make a bigger deal out of their frustrating interactions with Bug)
Good points - I got to see New York! Far from all of it of course, but I saw the Empire State Building out my window, Central Park and the zoo, the American Museum of Natural History,
impressive stores like Tiffany's and Saks, famous sites such as Rockefeller Plaza and The Plaza Hotel, and well known streets like Broadway and Madison Avenue.
One of these days I'm going to actually make an online album of all the pictures!
So the great things helped balance out the stress, but this experience took a lot out of us. It took us almost a week to prepare for the five day trip, and about a week and a half to de-stress and re-energize. I'm glad I had a chance to see this famous city, but we were all so glad to be on the train home.

Step One

I'm not sure I even know where to start right now. It's been a very rough couple of weeks. The trip to New York was so stressful and took ages to recover from. Then, over Mother's Day I got sick, which passed to Bug (his first time really being sick, and it made us all miserable), which then passed onto Boy, who was sick for ages. Nobody was getting enough sleep and we were trying to take care of each other - it was a horrible week. I felt like I was never going to get my energy back and be in a decent mood again.
Finally, I began to regain some balance (it really is amazing what just weeding a patch of land can do),
what happens when you do yard work barefoot
and I had to begin to prepare for my appointment with Dr. O - the OB/GYN my family doctor had given me a referral to. When? Oh, back in January. Yes, he had a four month waiting list. So maybe I should have been prepared earlier, but really, I just prefer not to deal with stressful things until I have to. Plus, there have been so many other things going on, that I just felt like I couldn't deal with this yet.
So, at the end of last week, I sat down and wrote out my whole story, and I mean the whole thing. From the beginning of always having very crappy periods, to my first miscarriage, my endometriosis diagnosis, my healthy pregnancy, my easy periods after pregnancy, my next four losses, my trial with progesterone cream, my ovulation pain, and finally, my increasingly worse periods, again. I marked down all the important dates, listed specific questions I wanted to know about any test we might do, tried to gather info on what tests might be good to start with or might have not have heard of yet, and did my best to not be anxious about the meeting. It was just to talk after all.
Bah. So how many of you are thinking, "Well, that was a waste of your time?" Cause you'd be right. Any of you who aren't thinking that, can I have your doctor, please? I really wanted a chance just to tell my whole story, because I know it's all connected. I wanted a doctor who I knew was really listening to me and taking into consideration all I have experienced and learned. I'm not entirely sure such a doctor exists.
It went sort of how I actually expected it to. He asked a handful of questions - how many times have I been pregnant, how far along were the miscarriages, when did they happen, and oh - did I have any proof? Because apparently, if I don't have medical records to back up my statements, they might not actually be valid. My four pregnancies that are based only on HPTs might have been false positives. (What?! Am I just that clueless? Cause really I thought it was incredibly difficult to get a false positive. Like, you had to be intentionally adding certain hormones to your body...?) He was calm and professional throughout and not quite as horrible as he sounds, but it's not possible to nicely say, "Your babies, whom you deeply grieved, might have been imaginary." He then tried to explain that it was possible that despite my monthly ovulation pain and bleeding every twenty-eight days, that I might not be ovulating and having regular cycles. So, he wants to monitor my cycle for a month (or three to six) - do blood work and ultrasounds through my cycle to see what my ovaries and hormones are doing. Hopefully, one month will tell him what I already know, cause there is no way I'm waiting several months to even talk testing. Especially since he tells us that having five miscarriages would put me in a "high risk" group that would likely need to do chromosome testing - something that takes three to four months to get the results. Ugh. I knew this was going to be hard, but this is even more than I was expecting.
Somewhere in there, his words made me begin to wonder if he was going to have me try to get pregnant so that he could see what happens. I'm really hoping that was just my perception, because I really can't handle that. I can't do this again without a plan, without an idea of why my babies are not staying alive. Even if he doesn't think I've had five miscarriages, my heart knows, and it can't handle another attempt without hope for a different outcome.
Before we left the office, we sent up contact info and blood work dates with his administrator. She was happy to inform me that doing the ultrasounds would let me know the best time for "trying." Um, honey, I know when to try. Trying isn't the problem. Getting pregnant isn't the problem, staying pregnant is. "We won't be trying these months."
"How come?"
"From my perspective (notice that I, at least vocally, give allowance that they could be right), I've had five miscarriages, and I just can't do that right now."
"You might not have."
Slam, bam, thank you mam. I think I'll just go home and cry now.

(Giant SIGH) At home, totally drained, I try to work some of this out, sharing it with a few who care about me. Out of their love and caring, three separate people let me know I need to find a new doctor PRONTO. I get this. I would likely give the same advice to anyone in this experience, who also had a different medical system. I don't feel like I have many options. In order to see a new doctor, I would have to go back to my family doctor and get another referral, which would most likely take another three to six month wait for an actual appointment, and no guarantee that they wouldn't say the same things. While writing this post, I actually looked up fertility clinics in Ontario (the closest of which is about an hour and a half away). I would still need a doctors referral, but they say they try to see clients within two weeks of that, which would be great, but - their initial task is to do a month or more of... monitoring! So I wouldn't be in a much different position. Plus, their site makes it sound like all blood work, ultrasounds and other procedures have to be done in their clinic, requiring several trips a month to the city (with a three year old - or at least almost three!). So, I'm sticking with this and hoping I'm not making the wrong decision. I do feel a little bit better knowing that the top docs will do the same monitoring. I feel less disregarded knowing that.
I have been praying about this, and will continue to do so, trying to trust that God leads our path even now. Hoping that he will make sure we are with the right doctor and will receive the right tests and treatments. God, give me wisdom to make the right decisions, to take care of myself and my health, and grant me trust in your provision.