Wow, okay, yeah, I missed two weeks.
OOPS.
Sorry, y'all.
Okay, here's the quick rundown of what's been happening:
1) I am super, super blessed that one of my oldest friends works at a brain research center. She spoke to her doctors there about what's been going on with me, and they agreed to look at my case. Just for consultation purposes, as a favor to her. ANYWAY, I was able to talk to Dr. J, a very nice doctor who is highly respected in neurology. First, he was SHOCKED at the level of tests that my neurologist, Dr. R, hadn't run. He asked me why she hadn't done XYZ, and I'm going, "Um, I don't know...I didn't know she was supposed to!"
The second thing he told me actually made me equal parts pissed off and hopeful. Going back 6 weeks, when I was first admitted to the ER, (when they misdiagnosed me with a migraine), the doctor there commented offhandedly that I had a bit of a sinus infection on the CAT scan. Nothing further was said, nothing was prescribed for it, and I was sent home. W I was admitted to the hospital 3 days later, no one said ANYTHING about the sinus infection. I wasn't really feeling sick, just a bit sniffly, and with everything else going on, it seemed rather silly to bring it up.
Hey, did you guys know that a sinus infection can actually get so bad that your brain is effected? Me neither. But it makes sense. All of the swelling can start to press on nerves, including optic nerves, which can cause double and blurry vision, dizziness and head pain. Sound familiar? Yep; there is a good chance that this sinus infection, which the docs and hospital had left untreated for a month and a half, could have 1) started the ADEM in the process (remember how it can be the result of a bacterial infection?) and 2) been keeping me from progressing in healing.
I got a crazy-strong round of antibiotics, ($200 for 7 pills, boy am I glad I have insurance!) and just finished them today. Funny thing, I didn't realize how much sinus pressure I had in my head until it was gone. I still have double vision and I'm still dizzy (I took a splendid fall yesterday and barely missed destroying my laptop), so it wasn't a total cure or anything, but I've noticed an improvement. Maybe I'll continue to feel better over the next few days?
2) Oh my gosh, you guuuuuys! Today was my first full day off of my walker!! I even went to physical therapy this morning without it. I'm wobbly, and I'm definitely not moving quickly (no marathons for me, haha!), but I'm completely unassisted for the first time in a month and a half. You have NO idea how good it feels! And yes, I know, I'm probably going to have a bad day tomorrow, and pay for all of this progress with an excruciating headache tomorrow, but for right now, I'm just enjoying feeling somewhat human, you know?
3) Speaking of therapy, basically what I'm doing is re-teaching my body how to walk. Yup.It's as fun as it sounds. The equilibrium in my body is off, so I'm having a hard time transferring my weight from one side to another, which is exactly what walking is. So I do a lot of work on parallel bars, taking one step forward and shifting the weight back and forth and trying to compensate for the fact that my body wants to keep falling to the right. And we do a lot of balance exercises. Something as simple as crossing one leg in front of the other can throw me off balance enough that I'd be falling if I didn't have a balance bar to grab me. Therapy is REALLY frustrating, and really challenging. But, I guess it's helping, since I'm able to get around on my own somewhat now.
Alright, so that wasn't exactly short and sweet, but hey, you love me anyway, right?
Tuesday, September 25, 2012
Friday, September 7, 2012
"Where I've been", or, "I have brain damage". No, literally. Stop laughing.
For those that don't know, I recently was diagnosed with a brain lesion and brain disease called acute disseminated encephalomyelitis (ADEM for short).
Yes, I DO have a brain, I've seen it on the CAT scan and MRI.
Yes, we now have confirmed proof that my brain is a bit, shall we say, off-kilter, which we all knew anyway.
I know most of you don't want to hear about my crazy medical stuff, and some people are sensitive to discussions on needles and tests, so I've been blogging about my disease and recovery on a separate blog: Mental Misfirings and Other Tales. You know, in case you're curious.
I'll get back to this blog when life becomes as normal as it's ever going to be again.
Yes, I DO have a brain, I've seen it on the CAT scan and MRI.
Yes, we now have confirmed proof that my brain is a bit, shall we say, off-kilter, which we all knew anyway.
I know most of you don't want to hear about my crazy medical stuff, and some people are sensitive to discussions on needles and tests, so I've been blogging about my disease and recovery on a separate blog: Mental Misfirings and Other Tales. You know, in case you're curious.
I'll get back to this blog when life becomes as normal as it's ever going to be again.
Four Week Update
So, um, four weeks, huh?
Damn.
You'd think it'Id feel like a long time, since all I've really been doing is sitting around the house, but no. I can't believe it's been just under a month.
First, I'm going to bitch for a sec, 'cause I got to get this off my chest. Being out of work when you live paycheck-to-paycheck really effing sucks. I have NO income coming in. Zip. Zero. Zilch. Nada. I've been approved for short term disability, which is supposed to provide a percentage of my income, but they've been dragging their damn heels in cutting me a check. I found out today that they mailed it on the 4th. It's still not here, probably won't get here until next week. And the bills are fricking due. The angry 'your bill is LATE you evil person you!" people are calling already.
I'm frustrated. I'm upset. I'm stressing. I'm angry. I CAN'T go back to work. Believe me, I would if I could. I can't pay these people because I don't HAVE the money. They can threaten me with collections all they want, and I can show them my empty bank account. But they still won't stop calling me. I'm stuck, broke, until that disability check comes in, or until I can go back to work. Which, considering I'm only able to type this by closing one eye so I can see a single computer screen is probably not happening soon.
This isn't a plea for money, or for help, so please don't think I'm asking for a handout. This is just the reality of the situation when you have a serious injury in America and companies can drag their heels as long as they want to keep from paying out what they should.
Also, the first person to bitch about disability payments being for freeloaders, lazy asses, or people working the system will get unloaded on. Because I'm in THAT kind of a mood.
Uh, yeah. Back to regularly scheduled update blog and all...
I started rehabilitation yesterday. Vestibular Therapy to be exact. It's mainly brain therapy, teaching my brain and body how to orient itself in space again so that I'm not dizzy and I have some sense of balance. Which would be nice, because I'm really, REALLY tired of stumbling, wobbling, and flat-out falling all over the place. The therapist seems nice, and I'll be going twice a week, plus I have a packet of exercises I'm going to be doing at home.
Vision-wise, I'm having good days and bad days. It's crazy. Some days, I wake up and it's great, I can even see pretty decently for awhile before it slips. Other days, nothing works right, I can't focus, and the double images keep sliding around in front of my eyes.
Balance-wise, again, I have good days and bad days. I guess it's all a part of the healing process, right? Two steps forward, one step back? (Or, in my case, stumbles forward, shuffles back?)
I want to get back to my life so badly it's not even funny. August is gone, and I missed the last gasp of summer. I missed the huge Labor Day, Last Camping of the Season trip. I'm missing The Fair. I'm missing The Mystery Wine Walk. September is in full swing, and I can't partake. I miss being able to walk to a friend's place up the street and gossiping over wine, or going to the dog park with my friends.
Most people know that I'm a geeky chick, and I play rpgs and games both on consoles and online. I miss the gaming a bit, but I really miss the comraderie and the family of my gamer crew. I'm blessed to play with people I've known/played with for YEARS, and we really are like family. I miss being able to jump into a game at the end of a long day and catching up.
Gods, I even miss going to work.
Yeah, someone remind me I said that a few months from now when we're in the holiday rush, okay?
Damn.
You'd think it'Id feel like a long time, since all I've really been doing is sitting around the house, but no. I can't believe it's been just under a month.
First, I'm going to bitch for a sec, 'cause I got to get this off my chest. Being out of work when you live paycheck-to-paycheck really effing sucks. I have NO income coming in. Zip. Zero. Zilch. Nada. I've been approved for short term disability, which is supposed to provide a percentage of my income, but they've been dragging their damn heels in cutting me a check. I found out today that they mailed it on the 4th. It's still not here, probably won't get here until next week. And the bills are fricking due. The angry 'your bill is LATE you evil person you!" people are calling already.
I'm frustrated. I'm upset. I'm stressing. I'm angry. I CAN'T go back to work. Believe me, I would if I could. I can't pay these people because I don't HAVE the money. They can threaten me with collections all they want, and I can show them my empty bank account. But they still won't stop calling me. I'm stuck, broke, until that disability check comes in, or until I can go back to work. Which, considering I'm only able to type this by closing one eye so I can see a single computer screen is probably not happening soon.
This isn't a plea for money, or for help, so please don't think I'm asking for a handout. This is just the reality of the situation when you have a serious injury in America and companies can drag their heels as long as they want to keep from paying out what they should.
Also, the first person to bitch about disability payments being for freeloaders, lazy asses, or people working the system will get unloaded on. Because I'm in THAT kind of a mood.
Uh, yeah. Back to regularly scheduled update blog and all...
I started rehabilitation yesterday. Vestibular Therapy to be exact. It's mainly brain therapy, teaching my brain and body how to orient itself in space again so that I'm not dizzy and I have some sense of balance. Which would be nice, because I'm really, REALLY tired of stumbling, wobbling, and flat-out falling all over the place. The therapist seems nice, and I'll be going twice a week, plus I have a packet of exercises I'm going to be doing at home.
Vision-wise, I'm having good days and bad days. It's crazy. Some days, I wake up and it's great, I can even see pretty decently for awhile before it slips. Other days, nothing works right, I can't focus, and the double images keep sliding around in front of my eyes.
Balance-wise, again, I have good days and bad days. I guess it's all a part of the healing process, right? Two steps forward, one step back? (Or, in my case, stumbles forward, shuffles back?)
I want to get back to my life so badly it's not even funny. August is gone, and I missed the last gasp of summer. I missed the huge Labor Day, Last Camping of the Season trip. I'm missing The Fair. I'm missing The Mystery Wine Walk. September is in full swing, and I can't partake. I miss being able to walk to a friend's place up the street and gossiping over wine, or going to the dog park with my friends.
Most people know that I'm a geeky chick, and I play rpgs and games both on consoles and online. I miss the gaming a bit, but I really miss the comraderie and the family of my gamer crew. I'm blessed to play with people I've known/played with for YEARS, and we really are like family. I miss being able to jump into a game at the end of a long day and catching up.
Gods, I even miss going to work.
Yeah, someone remind me I said that a few months from now when we're in the holiday rush, okay?
Wednesday, September 5, 2012
Welcome to September
Wow, where the heck did the summer go? My social media feeds are flooded with back-to-school pics, and several of my young friends are starting college this fall...COLLEGE. (How old do I feel right now) The Halloween candy is out in stores, Panera Bread is serving Pumpkin Spice lattes...It seems like autumn is just around the corner.
Sunday, I had an awesome day. I went to a park with S, L, E,and J, and we had what L is calling "Art-in-the-Park" day. I was feeling pretty good, I had a lot of energy, and the dizziness wasn't too horrific, and I was really excited to see my friends and get out of the house. We painted on canvas and chatted. It wasn't about the art, it was about the conversation, and I was so glad that we could all meet up. And we joked that my art was going to be the best because I have not one eye, but TWO eyes on my work! (Double vision and all) One eye is the artist and the other is the critic, haha!
But I think I'm paying for overdoing it. Monday and Tuesday, I was horrifically dizzy and drained. Today, my head has been splitting all day, growing increasingly worse as the day goes on. I finally had to break down and take the pain pills Dr. R prescribed. I don't care if it's going to set my treatment back, I can't take this anymore. The pain starts at the base of my head, right before my neck starts, and arches up the right side of my head to my temple. It's excruciating.
I know Dr. R said that there would be good days and bad days, and today is a very, very bad day. But there's a part of me that is starting to panic, wondering if this headache is the start of another demyelinating event, and I wonder how long I should let it go before I hit the panic button.
Tomorrow, I start vestibular therapy (that's my brain therapy, fyi), so hopefully the therapist will be able to give me a better idea of my treatment timeline, and give me some tricks and tips I can use at home to help speed my recovery time.
P/S, I updated the comment settings - some reported it wasn't letting you leave comments on posts....oops! Don't know how it happened, but it's fixed now.
Sunday, I had an awesome day. I went to a park with S, L, E,and J, and we had what L is calling "Art-in-the-Park" day. I was feeling pretty good, I had a lot of energy, and the dizziness wasn't too horrific, and I was really excited to see my friends and get out of the house. We painted on canvas and chatted. It wasn't about the art, it was about the conversation, and I was so glad that we could all meet up. And we joked that my art was going to be the best because I have not one eye, but TWO eyes on my work! (Double vision and all) One eye is the artist and the other is the critic, haha!
 |
| My painting, Falling Leaves |
But I think I'm paying for overdoing it. Monday and Tuesday, I was horrifically dizzy and drained. Today, my head has been splitting all day, growing increasingly worse as the day goes on. I finally had to break down and take the pain pills Dr. R prescribed. I don't care if it's going to set my treatment back, I can't take this anymore. The pain starts at the base of my head, right before my neck starts, and arches up the right side of my head to my temple. It's excruciating.
I know Dr. R said that there would be good days and bad days, and today is a very, very bad day. But there's a part of me that is starting to panic, wondering if this headache is the start of another demyelinating event, and I wonder how long I should let it go before I hit the panic button.
Tomorrow, I start vestibular therapy (that's my brain therapy, fyi), so hopefully the therapist will be able to give me a better idea of my treatment timeline, and give me some tricks and tips I can use at home to help speed my recovery time.
P/S, I updated the comment settings - some reported it wasn't letting you leave comments on posts....oops! Don't know how it happened, but it's fixed now.
Subscribe to:
Posts (Atom)