Out & About (Mostly).

Since I can't walk far and am not supposed to drive, I don't get out of the house much but my mom has been really good about helping us run errands when we need to and on the days when she gets the afternoon off. Fleas are a huge problem over here this year and when we moved here, I didn't think to get our dogs on flea medicine because where we moved from, there aren't any fleas. I mean, there might be fleas but they keep to themselves and don't harass dogs. So we went to the vet and got the flea situation sorted out.



My Uncle built a pizza oven in his backyard and had us over for pizza night. He made two different kinds of dough and he made a red sauce and so did my Aunt. He had me try both of the sauces but wouldn't tell me which was his. They were both really good but his was a bit runny so I said my Aunt's was better, then he called me a traitor. He called me pumpkin head all throughout childhood though so I didn't feel too bad. It was really fun to make our own pizzas and try out different dough/sauce combinations. My Uncle is our next door neighbor and I had to cross some gravel to get to his house. I was worried about it but with Jake's help and my cane, it went pretty well.



This is part of the mural on the best sub shop in town. My mom took me to the library so I could check out some books and then we went to get some City Subs. I picked up a couple mystery novels and some Harry Potters I had wanted to reread. The ridiculous thing is, one of the HPs I wanted was checked out but they had it in large print, it's over 1,200 pages long. I blast through it but the thing is really heavy. I have to ask Jake to carry it up and down the stairs for me.



Speaking of stairs, because I walk with a cane and my balance isn't the greatest, I asked my dad if he could install a hand railing to help me get up and down the stairs in my apartment. It is so beautiful in person and nice and sturdy, which is perfect. It's immensely helpful to have something to hold onto, especially while going down the stairs. Jake still has to help me too, by orders of my physical therapist but there is no way I'd be able to get into my apartment without it.

I'm Going to Whack People with my Cane

I've graduated to a cane!! We found my cane at the Goodwill and it had some return address labels stuck all over it with the previous owner's name and address. I decided it needed a washi tape makeover. I love how it turned out, it looks like it belongs to a 26 year old, not a 70 year old. Walking with a cane is kind of weird. I get a lot of looks but I'm used to it, I got a lot of strange looks with the walker. I thought about wearing a sign around my neck that says, "I have brain lesions!" Not because I mind the staring, but to alleviate people's curiosity.

It was pretty much the best day when my PT said I can use my cane if I wanted. I still have my walker, it's really good for when I do something where I might end up tired because my walker has a seat on it. Not only that, I "graduated" from Occupational Therapy this week and my PT said I'll likely have one last appointment with her because I've progressed so quickly and have been doing so well that I can continue to do my exercises and stretches on my own. I also saw my local neurologist and he was really happy with my progress. He wants to keep an eye on me though so I go back in two weeks.

This week was a good week! I even finished reading a book and my eyes haven't been hurting the last two nights. Usually by the end of the day my eyes ache so badly and get really blurry. It's due to inflammation on my optic nerves, but I think it is getting better. I'll write all about the book later, it was good. Some stranger recommended it to my mom when she was at the library getting some books for me. I love when strangers do nice things.

Charleston Seafood Festival

My Aunt and Uncle came up to visit and see how I'm doing. It was so nice to see them. They brought us some chocolate zucchini bread and I can't wait to try it. I keep forgetting how far along the growing season is. When I was sick it felt like time was standing still, so I have trouble realizing that we're almost halfway through August and it's not the end of June anymore.

We had a family dinner at my mom's house Saturday night and it was so nice to visit and hang out with everyone. Earlier Saturday we went to the Seafood Festival where my step dad does the sound for the bands. I took my walker and walked all around in a big square to check out every single food booth. I'm all about the food at things like fairs and festivals. There were fried oysters, tuna kabobs, and clam chowder. I skipped all of that as I don't eat fish and instead I had a giant burrito from the Mexican food trailer. I really love burritos and had dearly missed them. I also picked up some cotton candy to take home to Jake. It was a fun little outing with family. The only thing that could've made it a little more pleasant is if it wasn't freezing cold and overcast. I need some sunshine in my life.

It Got Worse Before It Got Better.

I've been missing again. It's because I was back in Portland at the hospital. I'll give you the short-ish version. I was on a medicine that was making me very very sick. My doctor admitted me to the local hospital to take me off the med. Then the neurologist told me I needed to go back up to OHSU hospital in Portland (5 hours away). You can only get a bed if a doctor refers you and a doctor up there agrees you need to be admitted. So when they say you need to go, you don't argue, you get in your car or the ambulance and you go right then. When my mom and I got up there, they did more MRIs and found another lesion, a really big one, down my neck and a good portion of my spine. So if you're keeping track, that's a lesion on my cerebellum, lesions on my optic nerves, a small random lesion in my brain, and a ginormous lesion down my spine. I like to rack them up.

I also had some other developments that weren't so fun. In addition to my previous issues of being really weak from not being able to eat without vomiting, having problems with my balance, being dizzy, etc. all of the sudden, I couldn't feel my right leg anymore. That's not quite accurate. The sensation in my leg changed. When the doctor took a safety pin and pricked my right leg, I couldn't feel it. My leg just felt warm and tingly, from my toes to my hip. That was one of the scariest moments of my life. I'm 26 happy and healthy one moment, I get the flu and a few weeks later my leg feels like a log. What the heck? So the doctors have decided that I have post viral encephalomyelitis. At least that's what I think he said. Really they aren't sure what's wrong with me and that's one of three things he said but he thinks it's the most likely so we're going with that. With auto immune issues, it's hard to give a definitive answer.

So what is post viral encephalomyelitis? I don't know. From what it sounds like, I had the flu, when the flu virus left my body something else in my body decided to go all crazy and attack itself thinking it was helping attack the virus, giving me these lesions. Gee thanks body, I appreciate it. So I've been home for about a week. I have in home physical therapy which is so nice. My physical therapist is super nice and awesome and I've been doing my exercises like crazy. The best part, the sensation in my leg has changed again. It still doesn't feel like it should but it feels a lot lighter to me, which makes it easier to walk. It used to feel like a stump I was dragging around. So that's good. They told me it could take 6 months to a year to recover, if ever. I may still have problems with my legs, my eyes, my thinking, for the rest of my life, but let's hope not.

The other issue I was having was that my skin felt like it was itching all of the time. I felt like I needed to scratch my skin clean off. I didn't care if I had flesh hanging off, and I was scratching, so hard that I was breaking blood vessels. I didn't have a rash or anything and lotion did not help. Finally I had a doctor say that it was probably a nerve problem and he prescribed me some medicine that was developed to help with seizures but it never did, but the people with seizures realized it was helping their nerves. So now I take it 3 times a day to calm the nerves in my body, otherwise I have this obnoxious itching issue.

So that's what's been going on in my world. I've just been working hard exercising my legs, trying to get muscles to return. Last week I could barely walk with my walker. I'd get 5 feet and have to stop. Today my gait is almost normal. I can't even tell you how good it feels to make progress so let's hope it continues.