becomingkate: (Default)

 My journal here and at livejournal has largely been indulging in many things. Rants about life, venting about frustrations, a way to cope with tough times, and I think it has been theraputic at times but I feel like I've been ignoring parts of my identity almost completely because they don't show. I think it's time to talk about them.

I think I have rarely talked about my disability, spina bifida, except in recent months when health issues have flared up. I don't think of myself as disabled because it is largely invisible. I can walk, I don't use any assistance, I don't have a handicapped tag, to anyone watching me I appear abled. I fumble to use the right wordage because I rarely talk about it. I don't want to say "normal". 

I spent most of my childhood dealing with spina bifida. I was constantly on pills, being taken out of class for physical therapy, getting excused from gym, and faking an injury or illness when I wasn't excused. I had lots of embarrassing physical issues besides being more awkward than kids are supposed to be in the first place. I couldn't keep up when my friends wanted to run around or climb the playground pieces, and I didn't learn to ride a bike until I was 12. I used to uncontrollably wet my pants well beyond the expected age. I was in and out of the hospital for surgeries and invasive procedures since the day I was born. They finally stopped when I was about 14.

I know I've grown up with lasting effects from this childhood. It's only now that I'm starting to realize what those effects are. I lived a wonderful doctor-free life for many years because I went on strike after my childhood. As soon as I moved out and made my own decisions, I stopped seeing specialists. I didn't want to admit I might need them still, and I didn't have the foresight to realize what the lack of upkeep might lead to in the future. My parents begged me to go back to the specialists, but I thought that's what parents are supposed to do, right? Worry needlessly?

I get excessively uptight and anxious about blood draws and IV's because I went through harrowing experiences (even recently) where they had to stick me numerous times, sometimes in nonconventional places.

I feel like by not speaking up about what it's like to deal with this, I am contributing to the silence in this issue. People assume you're either visibly abled or visibly disabled. If you can't see it, it can't be that bad. People who have chronic pain or other health issues that can't be seen deal with doing things like an abled person would, or being criticized. If I went to use the elevator instead of the stairs, if I'm having a hard time getting up and down that day, because I do deal with leg and back pain, I'd be judged for not leaving the elevator empty for someone in a wheelchair. If I got a handicapped parking tag, I'd be looked at funny, or maybe even confronted, when I walked away from my car.

I've struggled with sex for a long time-when I was younger and having casual sex, I could position myself in a way where the guy would not see any of my scars, and heaven knows they didn't care if I got off (I never did get off, until I met my husband), so I didn't have to explain that I have limited feeling in that region and it might actually take some work. Then when I met my husband, who actually did care if I enjoyed it, it took months for me to figure out what would get me off and lots of explaining that it wasn't his fault. I figured out some nonconventional ways that got me there, then I felt guilty for liking it.

When I got pregnant everyone was afraid for me. Would my body be able to handle it? Would I have to stay in bed for months? Turns out, no. I worked as a cook well into my pregnancy, finally quitting at 7 months pregnant, I think it was. I had a c-section planned because they said that was safest for me and my son. I wasn't complaining, as I was pretty worried I wouldn't have the lower body strength to push. I ended up with an emergency c-section because my water broke. I could dwell on whether or not it was the "right" way to do it, but the point is that my son and I came away healthy.

Through the years I've dealt with many ups and downs, and realized the stereotypes people have about ability. I've noticed how much more difficult it would be for someone with special needs to cope with just about anything. I noticed that accessibility sometimes seems like an afterthought. People would have to go out of their way to get accommodations. This seems like the opposite of "accomodating". It should not be the responsibility of the user. When you say a place or person is accomodating, you mean they are open and welcome and easy for all to use or approach. However, it seems the opposite in a lot of cases.

I hesistated for years about speaking up. I didn't feel it was my place because I know a lot of people have it a lot harder than I do and I don't want to speak for them. But I hope that adding a voice will make it easier for them to speak for themselves.
 

becomingkate: (Default)
Warning for discussion of medical conditions and procedures and surgery. 

Click )
becomingkate: (Default)
Dear readers, I tagged every single one of my entries for you yesterday.  I left some of them like the writers block topics and I put a meme tag on all the meme questions I answered, but I might go back and categorize them too someday.

I had forgotten I started this journal with the intent of it being a depressed mom's blog.  That's pretty much what I was, 5-6 years ago.  Thankfully since then I have gotten some obsessions hobbies that have helped me pull though.  But wow I had some scary moments.

Oh and also, I don't really talk about anything triggering here, aside from depression, fleeting thoughts of suicide and maybe some icky medical stuff, although I try not to go into much detail, and it's not really gory or anything, Really just more about bodily functions and stuff.  I do try to warn before I say something that might be bothersome.

I keep getting a feeling that something big is going to happen.  Last time I felt like this, I got a couple breakthroughs on my cookbook. I'm still waiting for the Remember Betty coordinator to talk to Danny, which should be soon based on what she told me.  I'm wrestling with contacting her again--I don't want to seem desperate.  If you're a little lost, you can look under the cookbook tag to catch up on what's going on.

Have a good day, folks!



becomingkate: (Default)
I'm thinking of quitting my job or at least trying to transfer to something else. Right now I'm a bus monitor on a small van that takes 3 kids to a school just out of state. I go twice a day-once to pick them up at their houses and bring them to school, and then after about a 3 hour break I go back to the school and we bring them home. It sounds easy right? Here's the problem-I've been having chronic stomach aches lately. Because of many medical issues I've had since birth this is very uncomfortable for me and I'm never sure if I'm going to be okay or if I'll need to run to a bathroom. This is not really cool when you're stuck on a van on the highway.

It's mostly anxiety, because usually as soon as I get home, or sometimes even after the kids have left the van, I start to feel better. But because it's so random, I'm never sure what's going to happen.

I'd love to stay home, but we make just a little less than enough money. My job is only part time-I really need a full time one. My husband is okay with me going back to school IF I study something I'm actually going to use. But how am I to know what will be lucrative?

I've mentioned before that I have a project in the works, and I've considered making a website for this project. I'd need to take some classes for that because I don't know the first thing about making websites.

I wish I could just function normally and get a real job but I don't think a lot of people are going to be accepting of my having to randomly find a bathroom all the time. LOL

My mom did mention that I could try for disability, which I guess I'll bring up with my doctor when I go in a couple weeks. I hate having to do that, because there are people with real disabilities and here I am just not being able to handle not being near a bathroom. I feel like that's a lame excuse. But I don't know what else to do. I also don't really want to go back to school. I'm not really very self motivated.

Blah...
becomingkate: (Default)
Oh duh, I should probably mention I have spina bifida. I have very few issues now, aside from having some bowel issues, having to self-cath and having some side effects of with sex...but I don't mention that stuff a lot here anyway. Still if you have questions feel free to ask. I've had a relatively "normal" life despite being in the hospital for a lot of the first 13 years or so of my life. Our son, fortunately, has no trace of spina bifida. It's a big concern when a woman with SB or a father with SB (my husband does not have SB) creates a child, but our son is perfectly normal. Aside from asking 500000 questions a day and having a selective hearing problem. :P
becomingkate: (Default)
WARNING! The squick factor is high in this one!

So I'm chatting with a guy I knew when I was a pre-teen/early teen (we had a very cute little puppy love kind of thing where we went to the same summer camp for a couple years and we actually didn't live too far from each other so we'd go to lunch and movies together and stuff)

He's currently in the hospital for a severe UTI. He was saying he got an IV put in and I expressed my disgust for IV's. I was in and out of the hospital many times as a child/early teen.

So after I said I was glad I haven't had an IV for the past couple decades, he said "Oh, because of the time you had an IV in your neck when we were kids? That would have freaked me out, too."

0_0 Wut?

Turns out he remembers when I was relating one of my hospital stays to him over the phone I told him I'd had an IV in my neck.

I have no recollection of this.

I don't know what freaks me out more, the fact that it happened or the fact that he remembers this from over 15 years ago, and I don't. I asked him if he was sure it was me, and he said yes.

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becomingkate

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