I remember being ambulanced there with an extremely handsome EMT. I remember him dropping me off, and then I don't remember the next 4 days. Apparently I developed a serious infection due to the kidney blockage. They had to drain a lot of fluids from me and they put me in a coma for 4 days. They also had to take out the shunt in my brain because they were afraid it would become infected. This gave me a lovely scar from my sternum to just below my belly button.
Next thing I remember, I was awake and I had a breathing tube and feeding tube in. I remember them taking them out. That's not something you want to remember, folks.
After that, I remember having some kind of cone of shame around my face that was blowing oxygen at me and I thought I was in a big room with music playing. There was a curtain in front of me that had little printed animals on it, and the animals were dancing. I thought, what a cool effect, I wonder how they do that. This "big room" was my hospital room. There was nobody else there, except my husband, and yet I felt like I was in some big arena surrounded by people. Every time I closed my eyes I felt like people were around me, with me. I thought people were in my bed. I thought I was at a concert and I had a vision so real of a little girl next to me asking if she could use my phone to send a text. When I was lucid enough I actually went into my messages to see if that happened. I thought I could control music with my mind. I kept thinking I was using my phone and then I'd look at my hands and I wasn't. When I tried to sleep I imagined hellscapes with demon birds chasing me, huge mountain ranges and burnt landscapes.

As soon as I could ask, I got off those meds.

My husband came every day (even when I was not conscious), and my son came a few days later when I was feeling better. I had excellent nurses but I was still sleeping most of the time. Eventually I moved from the ICU to intermediate care where they bothered me less and I was actually feeling somewhat normal. I had to wait days to replace my shunt because I kept getting infections, but I felt okay, so that was super frustrating. People came every day to take my blood for labs. Sometimes it was someone who was good with difficult draws, sometimes it wasn't. I finally asked the woman who was good at it to come back every time. I was seeing so many different medical teams, I could barely remember who was who.

When physical therapy came to get me out of bed, I could barely walk 10 feet without breaking a sweat. I needed a nap after the session.

Hrrm, I seem to have lost the last half of my entry. I wonder if it's in drafts somewhere. Would be a shame to lose it all.

(entry 2)

So I just wanted to kind of update, and finish the story. I'm sorry if I've repeated some. Basically after they replaced my shunt they waited a couple days to see if it would cause no issues, and it didn't seem to. Then they sent me home. The first couple weeks at home were rough but it was still good to be home. It seemed like when I got home I just had more hope and optimism, and that I could choose to get up when I wanted to because I wasn't hooked up to anything anymore and I didn't feel at the mercy of doctors and people who wanted to take my blood in the middle of the night and fun stuff like that. I needed a lot of help at first, I could barely move. I got a cane and managed to get up and down stairs slowly to shower and go to bed. I had PT come and give me exercises and that helped a lot. I still had ongoing things to deal with including a tube in my kidney which came out a couple weeks later when they discovered it wasn't actually working anymore. That was removed with no sedation because I had eaten that day. I wouldn't recommend it.

I felt like I healed relatively quick after that but I still had to get the kidney stones out. That happened last Friday and it went well. I only felt pain for a couple days after that, and I also had my period, so I honestly couldn't tell the difference between the surgery pain and cramps. On Monday I had to remove a tube at home that they kept in my bladder to help keep things open while I healed. That also was not fun. But now I am free and feeling pretty much back to normal, except now I am getting mild headaches. I have an appointment with a neurologist in a couple weeks so hopefully he can schedule me for an MRI or something to see if the shunt is functioning.

My husband has been home this whole time and I'm actually not looking forward to him going back. I have appreciated all the help especially with my son who is tough to deal with. I think I'm just going to have to make a schedule for him so we can stay on track. He too is dealing with a couple health issues, I don't know if I mentioned but he has an immune disease similar to arthritis and the meds weren't working so now we are trying an autoinjector of Humira once a week. His scoliosis has also worsened so now he wears a back brace and does exercises. So we have to keep up with his things too.

I took up watercolor painting last week and I've been having fun with that. I also took this downtime to try to find more people to chat with online and I actually met a woman who I have been getting along really well with as a friend and we might meet next week. She lives an hour away, but it's nice to have someone else to talk to and possibly hang out with once in a while.

Yesterday I started couch to 5k again. I was only two weeks away from finishing the program when all this happened, and now I'm starting over. I couldn't complete the first day-I got tired after 20 minutes instead of 30. But I will just keep repeating the first day until I can do it.

I'm talking with my college advisor to plan the fall semester. I have to rework a couple things because I dropped the statistics class I had planned for this summer.
I completed my spring courses-I had two incompletes after everything happened and I completed all that last week. The other two classes were nice enough to drop the things I missed and grade me from there.
So I'm just hoping to make it through the summer and get back into a good routine in the fall.


 

The free trial went by and I really liked their approach. I thought I kind of got the hang of it and I was actually going to cancel the card payment but I forgot. So I got charged, and I even reached out to the CS to try to go back on it, but they (conveniently) didn't answer until I was about another week into the program and then I was hooked. I totally don't fault the company for this, it was my responsibility to keep track of the free trial and cancel it if I wanted to. Some people think it's sneaky but I don't. 

I like their food system, I like how they don't say "this is the diet you have to follow and this is the exercise you have to do". A few weeks into the program they actually talk about different diets and the pros and cons. They did have a week or so on exercise tips and routines which I mainly skipped because I'm already doing Couch to 5k.

Ok, brag break! I've made it further in c25k than I ever have! I'm about to start week 5! I had to slow my speed down but now I'm able to jog for 5 minutes straight which is huge for me.

Anyway, back to Noom. I have lost 10 lbs. since the end of February! Noom tells you to weigh in every day. I originally hated this approach. I thought it was obsessive. But now I really see how weight can fluctuate and I feel like every day is a new beginning instead of striving for a week only to see the scale go up or not move at all. Maybe two days ago you had lost two lbs. but you don't see that because you only weighed yourself on one day.

Every day it gives you articles to read, little quizzes to take on what you've learned and gives you the chance to share things with your group. I often hear that the groups are pretty quiet (mine is) but that's really okay with me. I love how it changes your habits a little at a time and doesn't deprive you. It helps you learn to moderate your eating and change the habits that make you eat poorly.

So that's my PSA, if you're thinking about it you just have to be careful of their automatic billing.

I find that I am so comfortable in this school setting because I have dreams and goals for my school years and I'm successful in carrying them out. I have big dreams that will come at the end of my schooling, but if I only had those, I would probably fail. Short term goals are very important to me because they keep me feeling motivated and validated. They make me feel like I can reach that end goal. I think I'm slowly realizing I have things to contribute to society. For so long I was happy being invisible. I'd go to cooking jobs and not say a word and to be honest, not do a great job. I just didn't have any goals or motivation. I should have been more self-motivated but I also needed that outside validation and well, cooking is not a super validating career. 

So, I think it's time for me to come of age and get my shit together.

I downloaded it so I could start learning Italian, which I plan to take since I need one more language class and I don't need to stick with Spanish because I'm not traditional age and haven't taken college Spanish in decades. I was so confused by Italian on Duilingo that I kind of gave up. The app used to remind me to log in and I'd ignore it. Today it said "These reminders don't seem to be working. We'll stop sending them." And I was like wow! Now the computers are giving up on me! I was actually sad.

I still want the reminders even though I might not heed them. I want my app to care about me and miss me!

 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.