Friday, August 28, 2009

Waiting for the storm, and some more health stuff

Yesterday we had Enrichment at Church, and Royce was meeting someone there to go to a discussion, and we're getting ready and almost ready to leave, and we hear some thunder, then the power went out. Then it started pouring rain, and huge peals of thunder, and lightening, so we decided to kind of wait out the storm a little bit before we went outside (because they can get some scary storms out here. The wind was blowing really hard and shaking the huge lamp post outside, and then I decided we needed to stay away from the windows a little more), and since the power was out there wasn't much to do, so Emmaline started playing with the camera, and we just hung out taking pictures together. It was nice.

This might possibly be my favorite picture of Emmaline, because I finally got one where she's really smiling! Normally she makes all sorts of crazy faces, as you can tell below. :)





So I've been thinking about posting this next stuff for a long time, but have been kind of hesitant, and I'm not sure exactly why, but I've finally decided that I need to write at least a little bit about it, because we have been really blessed, and I want to show my gratitude. It's long; sorry. As some of you know I've had kind of a crazy couple of years as far as health goes; I have what's called mixed connective tissue disease which basically means that I have a few different forms of auto immune diseases, namely Lupus, Rheumatoid Arthritis, and Antiphospholipid Syndrome. It all kind of started when one day in July, a few months before Emmaline turned 2, I got a headache. And after a week it didn't go away, so I went to the doctor, tried different stuff, then he ended up sending me to a neurologist. We'd also been trying to get pregnant for the last 3 or 4 months, and ended up getting pregnant a few weeks before my appointment with my neurologist; she said there wasn't much she could give me because I was pregnant, but after I was a little farther along she wanted to run some more tests. But then when I was about 9wks along, I had a miscarriage. (Really hard at the time, but also very necessary with diagnosis/treatment and a very important step in my spiritual development. Also the day that it happened was Royce's first day teaching high school at a brand new charter school, and for lots of reasons it was one of the hardest times of his life, and while he didn't want me to have a miscarriage either, the timing was such that it got him away from work and the huge emotional downward spiral he was starting, and he put all of that aside and focused on me, and helping me heal, which made it able for him to get through that huge challenge he was facing. Another blessing that comes with adversity.) Anyway, when I wasn't pregnant my doctor could put me on some medicine to make my headache stop while they tried to figure out what was going on. So she ran a bunch of blood tests, long story shorter, I ended up at a Rheumatologist and was diagnosed with the mixed connective tissue disease. My levels were kind of through the roof, so he put me on medicine to help that, and he also put me on an asprine a day, because the APS makes your blood clot more often than it should, and it gets worse with certain things like pregnancy, hormonal birth control, surgeries/injuries, stuff like that. (Which kind of freaked me out a little bit...it was like there was a stroke just waiting to happen.) APS also is often diagnosed when a woman has had frequent miscarriages, because tiny blood clots block the blood supply to the fetus. (Preeclampsia is also a symptom of APS, which is what I had when I was pregnant with Emmaline, and I also had a blood clot in my calf after the c-section. APS is usually diagnosed in women during their childbearing years. So if you have these symptoms you should check it out. :) )
So anyway, after I was diagnosed with all of this we felt like we needed to wait on getting pregnant again (now we think adoption is going to be the right way for us), and so the last couple of years we've kind of been getting into the swing of things, and figuring out my limitations and what not and kind of learning how to handle things, and throughout all of this I have learned so much, and I think even more I've been able to realize how truely blessed I have been. I admit that it was kind of hard to take at first, and has made us change some of our plans, mainly in regards to how many kids we can have/take care of, but it was a necessary step in my/our spiritual development, and has brought me/our family closer to the Lord, and has given me a precious testimony that I don't think I would have had without these experiences, especially with the miscarriage. But that's a story for another day.
It has been such a blessing to be able to know that I have this, so I can take the right medicine to treat it and take care of myself. It was pretty miraculous to be able to be diagnosed so easily. Everything seemed to fit into a perfect timeline, one month at a time, starting right about when Royce and I got married. :) But most people with autoimmune and other chronic diseases go for years with symptoms and can't find any kind of a solution, and I had a straightforward diagnosis in 6 months, without having hardly any of the symptoms or even knowing anything was wrong. And one of the reasons that I'm posting this now is that two days ago I had my six month check up with my rheumatologist, and I am doing extraordinarily well. My medicine has made all of my levels go back to normal, and it's something that's been used for years, it's inexpensive, and it's working! I don't have to be on any steroids, I don't have to be on blood thinners (only a baby asprine a day). Things are working out so great! We really have been so blessed, and so lucky for everything to be running so smoothly. Hehe...the only sad thing about my appointment was that my hair is still falling out, but my doctor said that's kind of to be expected and mine isn't that bad, but even that is another good thing, because it could be a lot worse, and that would be another sign that I would need to be on some heavier medications. So only my vanity is hurt. :) Okay, I think I'm done now. Whew.

13 comments:

Lea said...

Ok, that entry made me cry. Love you guys so much! Tori, you have such a precious spirit - let me know if there's anything I can do with the future adoption process.

Tori said...

Thanks. Love you too. Sorry to make you cry. :)

Hizzeather said...

Ummmm....wow. It just goes to show that sometimes we have no idea what's going on in each other's lives! It seemed to me that you and Royce were just living a perfect life!

I'm sorry for your struggles, but I must say you have the perfect attitude about it! Any opportunity to learn and grow is a good thing, and it sounds like you've had more than your fair share of opportunities!

Adoption is so wonderful...check out my friend Brittany's blog. maybe it will help you figure out your next step.

http://queandbrittanysblog.blogspot.com/

Best of luck!

Anita said...

hey Tori! It was soo good to see you in Austin! I just really want to thank you for posting this. It seems you take the suffer in silence route, and I take the tell everyone in the world(even if they don't wan to hear it route) :) So I really appreciate you putting these things down (I know it wasn't easy) so that it can give people like me hope, and we can cry about going bald together:) I appreciate the connection you make to adversity being a good thing, and usually when we think something is really bad it usually turns out to be a blessing later in life. -Love you-

Anita said...

p.s. I forgot to mention that you look beautiful, Emmaline is the sweetest little girl, and I've been dreaming about the brownies you made us...mmmm so good!!!

Dani said...

Tori, Thanks so much for sharing your joys and struggles and positive outlook on life. It's such a wonderful reminder to be oh so grateful for what we have. You are definitely inspiring with your optimism and recognition of blessings amidst diversity. Thanks again for sharing!

Tori said...

Thanks so much Heather, and thanks for the blog. There was lots of really neat stuff there, and I'm going to go back often.

Anita! I can't tell you how much I loved our visit. Mainly because it was just fun to see you guys again, but it was so good to be able to talk to you about everything, and have somebody understand what's going on. And I think it's good that you let people know, and you've had a much tougher rout getting to where you are than I did. And I think I'm going to try to grow out my hair long and have someone make those clip thingys out of my own hair. Maybe. :) Oh, and we found Pax's hat in the couch! E-mail me your address, and we can send it up to you. Hope your move went okay, and it was so good to talk to you. Love you!

Tori said...

Thanks, Dani. You are a really good example, especially of motherhood, and it's great to get to see that on your blog!

Jenny said...

Tori, you're so amazing - there's not much else to say. Let me know if I can do anything to help you! Love ya!

Tori said...

Thanks Jenny. You too!

Miss K said...

toad. i love you! thank you for your example.

Aubrey said...

Oh Tori! Sometimes life can be such a challenge. Thanks for your positive example...that's just how I remember you when we were roommates. Always such a good example and always having Fat Boys in the freezer...two very good things:) You are loved...hang in there kiddo!

Tori said...

Thanks you guys. We had a lot of fun together. Mmmm...fat boys. So delicious.