My husband and I were talking about what would happen if Voldemort was real because we're nerds like that. He said he would join up with him if he would let him be his Dark Lord apprentice. He'd be all about eating death. I said that death would be eating me, because there is no way I would survive a war. He says, "isn't that kind of what's happening already?" Not in a mean way, but as a joke about how crappy my body is. Then a few minutes later I yawn and let out a yell. Something happened to my neck like right under my chin on the left side. Kinda feels like I pulled a muscle. According to my husband, death wanted a snack. Now I'm trying to figure out how to strap an ice pack to my face.
Wednesday, May 28, 2014
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I got my blood work redone last week. My thyroid has improved but my TSH is still abnormal. Last time it was 11.75 and now it is 7.5 (normal is 0.04-4 if I remember correctly). So they've increased my meds from 50mg to 75mg and will recheck in a few months. They were supposed to run a couple other things at the same time but they didn't tell me the results over the phone. I'm choosing to think that means they came back fine. =]
I've had a lot of problems lately with nausea, especially at night but increasingly all the time. Before nausea meds were on an ass needed basis but now it's pretty much everyday. I dread taking my nightly meds because that always makes it worse and night is bad already. I tried taking them in the morning but they make me too sleepy for that. Not taking DHA and niacin helps but I need them. I've also been prescribed Gatorade for the electrolytes (or coconut water but that's gross) because I've had more problems with my restless legs. Starting to drink a 12oz bottle everyday has cut down on incidents quite a bit.
A few weeks ago we decided to give something called Soylent (it's not people) a try, but it takes 10-12 weeks to ship. I plan to do a whole post on that and why we want to try it once it gets here. But one of the good things about it is I wouldn't need to take DHA, niacin, or drink Gatorade anymore because it has all those things in it. We got some of the not so healthy meal replacement shakes from the store until then. Just to sort of get used to drinking a "meal" instead of eating. They aren't really a meal though, they're only 250 calories. That's more like a snack. Anyway some days I will have one of those as breakfast, and then last night I had the bright idea to use one as my night time pre-meds snack. I have to eat before taking my night time meds or I will throw them up. It worked really well! I didn't take my niacin or DHA because I'm a terrible person, but I was able to go to sleep fine without really experiencing any nausea. This is something I will definitely continue to do.
Friday, May 23, 2014
I love Tyrion. not as much as Snape, but he's up there. After his speech a few episodes ago I wouldn't be surprised if Peter Dinklage wins another Emmy. But as much as I love Game of Thrones this post isn't about that. It's about chronic illness.
Lately I've been trying to look at being chronically ill, at being a spoonie, as a neutral fact. Obviously being chronically ill sucks, but the label shouldn't be seen as something bad. It's not a statement of my character. It's not something to be ashamed of. I feel bad enough because of my illnesses I shouldn't let other people's reaction to said illnesses make me feel even worse.
I am chronically ill. I am a spoonie. I am disabled. No I don't work, no I have no current plans to finish my degree, no I don't know when I will get better. I may never get better, and that's not my fault. I'm not a stay at home wife, that's just a cover because telling the truth makes people uncomfortable. Well tough, I don't want to hide who I am or pretend I'm something I'm not. It's not like people won't talk anyway.
I've been out of work since 2011. I shouldn't have been working before that. I am currently trying to get on disability but that is an up hill battle. There are a lot of misconceptions about endometriosis and I am on the more severe side of things. I also have several other health problems on top of that, some of which they are able to count and some they are not. But regardless of what the government tells me, regardless of what the lawyers say, I am disabled. And that is okay. I am learning to say that with my head held high.
Sunday, May 18, 2014
My sister was born when I was 11 years old. We didn't know it then but her brain had been damaged, she had dyslexia, she was autistic, and had a worse case of eczema than I ever did. As a baby it was almost a full time job to keep her from scratching off all her skin. Sometimes we failed and went to the ER over raw and bloody knees. They didn't know about her other problems yet, you see, so we were told when as she got older (and more self aware) things would get easier.
She was not a planned pregnancy. My parents fought constantly, in short because my dad's a sociopath. When they fought I would pick my sister up, hold her, and tell her she was loved. It wasn't her fault. She was safe.
Three years later our old sister ran away under the influence of her emotionally abusive boyfriend-now-husband. That just added additional stress to family life and I felt even more responsible for my little sister. By now we were starting to notice developmental problems, although I can't remember if she was in speech and occupational therapy yet. I was beginning to feel motherly instincts, in fact taking care of my sister is what made me want to be a mother someday. I would take her for walks in her stroller sometimes and once someone asked if I was her mother. I was a bit appalled seeing as I was 14 and not even interested in boys, but that moment has stuck with me all these years.
Jump another three years and my parents are finally getting divorced. My sister has started school and things are not going so well. My mother had been a SAHM pretty much my whole life, but would be returning to work now that my dad was gone. Over the next year or two we'd try different things as far as child care went. Sometimes I would watch her after school or on weekends if my mom had to work, sometimes she would go to the Boys and Girls Club, sometimes she would go to other after school programs.
Eventually it became my job to watch her, and I mean that literally. I became certified through DCF as a home daycare able to watch up to three children, and because we were poor my mom got a voucher to pay for part of my sister's daycare costs. Basically the state paid me to watch my sister. I'm sure that sounds silly or even fraudulent to some people, but remember my sister has special needs. Me watching her is what we deemed best for her and for us. I couldn't work and watch her so it all worked out. This only lasted a couple years, though I've been my mom's primary back-up ever since.
Soon we realized traditional public school was not working for my sister. She couldn't read. She had an IEP and was continuing therapy but there wasn't much else the school could do. She was held back in first grade but we were told they couldn't keep her there forever. She was going to be passed through the grades until she "graduated" whether she could read or not. So my mom made the decision to home school her.
Thankfully it's worked out quite well. She's not homeschooled in a traditional sense with workbooks and such. I think the term most often used in unschooled. For my sister to learn something she has to care about it. You can go over the revolutionary war a million times, but until she cares about it she won't remember. So sometimes they go on trips to places were things happened. They find a book series she loves and she has slowly learned to read thanks to Percy Jackson. She's still not on grade level but she can get by. She learns math through video games. If she wants to buy this mount and she has this much gold, how much more does she need? If she can earn this much gold through this activity everyday, how many days will it take to earn enough for the mount? It's not calculus but it's enough to get by.
I'm really proud of how far she's come despite her limitations. I'm glad I could be a part of it. She's much more independent now, but we're still closer than I think we would be if I hadn't been such a big part of her life growing up. I don't resent her for needing me, for taking away some of my youth. I'm thankful we got to spend that time together. Don't get me wrong, like all little siblings sometimes she's annoying and needy and wants me to do things for her that I know she can do herself. I didn't always want to be responsible for her, sometimes I just wanted some time away. But I love her and I will always cherish being her big sister.
This post was inspired by Bittersweet by Miranda Beverly-Whittemore, a novel that exposes the gothic underbelly of an American dynasty, and an outsider’s hunger to belong. Join From Left to Write on May 20 we discuss Bittersweet. As a member, I received a copy of the book for review purposes.
Wednesday, May 14, 2014
So apparently it's been like a month since my last real post. Oops. I'm also like a weekish behind on my post about Ruby for From Left to Write. I do still plan on writing that, btw. I've not been having a great time lately. I can't even remember what's been going on the whole time since I posted last, but it probably wasn't good.
I did finally get over my flu like illness at some point. That was a pain in the neck. So yay for eating stuff other than cereal. I've been having more problems with my endo. I got AF and then I've been spotting on and off since. The pain comes and goes as well. Apparently endo has spread closer to my back because I'm having a lot of back pain now. My doctor doesn't think it's from anything else. It sucks though because heat isn't nearly as effective on my back as it is normally. We've increased my aygestin dose again and another lupron shot might be in my future. Josh thinks I should have another lap but we can't exactly afford it.
We had a spell of very nasty weather. Over the last year I've been feeling the weather a lot more than I used to, more than 26 year olds should really. One of our dogs has a storm phobia which also sucks. Parts of our city flooded but our property is fine. Not too far from here whole streets were washed away and stuff so even though the storms weren't fun we're glad we didn't have to deal with that.
My mom graduated with two bachelor degrees on the 27th. Josh kinda graduated too, but he decided not to walk. (He only has internships this summer.) So there were a bunch of events for that. My mom won two awards and he won one! It was quite hard on my body and I think I'm just now recovering. I haven't hardly done anything in my free time since the events started other than lay in bed and watch TV.
Our house had some serious plumbing problems. We had to have a plumber come out with an excavator and replace all the piping from our house to the street and also had to have some pipe in the shower replaced. Something is wrong with the dishwasher too but we aren't gonna deal with that right now because it's not as necessary. As you can imagine it's been stressful and expensive.
Then of course there was Mother's Day. This was my second Mother's Day since the loss and I expected it to be easier than the first one but it wasn't. Maybe it just takes more time, or maybe it will always be this hard. Hopefully we will eventually have other living children and the day will be more bittersweet than just bitter. My mother made things easier for me and decided her graduation dinner would double as Mother's Day lunch. That way I wouldn't have to go out that day or see my hugely pregnant sister. Her baby shower is this weekend I think but I'm not going.
I think that's everything, or all the major stuff at least. Hopefully I'll have something more positive to post about the next time.