Tattoo Evolution

So, I've decided that I want to add to my CF tattoo (the 3 purple roses). The roses represent me, my brother, and our cousin, all with CF. I want to add a fully bloomed rose for each of close cysters and fibros that I've met, and a rose bud for the ones who died before I got to meet them. The original roses are the only ones that will be purple, all the others will be the color that the person chooses (or in the case where they have passed away their favorite color or the closest thing to it other than purple). I'm thinking of doing banners for each rose with the person's name but I'm not sure about that yet. I hope to add 4 or 5 roses every year as I have the money. Eventually this thing will be a sleeve because we're talking about a lot of people.

Neuro follow up.

My MRI and EEG were totally normal! As it stands now my chances of another seizure are about 25% and I don't have to go back to neuro unless I have another one!

Nuerology appointment.

So I saw the neurologists today for an evaluation of my seizure. They can't pinpoint a cause for it, so as far as that goes I got no answers. It still could have been the PTC 124 but the company hasn't had any other reports of seizures. Hopefully now that I've had my follow up visit they will unblind me soon.

They want to get an MRI because its a better image for them to go off of. It could show very tiny blood vessels problems or very tiny tumor(s) but the chances of either of those is small. The more they rule out the more my chances of having another seizure decrease. They also want an EEG to check my brain waves. So we'll get those done and see what happens.

Walk your Cheffi.

Here I am at 4-something in the morning, hacking my brains out from a cold (that's another blog) and I am reflecting on J's efforts to walk his Cheffi every day.

For a short time J's daughter couldn't say my name correctly. It kept coming out Cheffi. Well, it stuck. I'm ok with this though, I've had worse nick names. Now she says my name correctly and J and his son will probably forever call me Cheffi. It will be one of those stories we tell everyone until the end of time. When K was little she called me Cheffi and Cheffi I stayed.

So, I'm Cheffi. And I frequently call J "my J". So of course he calls me "my Cheffi". Well a while back we made a pact to excersise regularly.....then we promptly failed to follow through on it. So sometime last week J got motivated again. We were out somewhere, probably Green Lake in Seattle, and he said something about having to walk his Cheffi. He knows that I need to build on excersise slowly so he has decided that for the time being he's going to walk his Cheffi daily. Its become one of our little coupley things. "Don't forget to walk your Cheffi today!" So he takes me different places. We even hiked half way up Rattlesnake Ridge, and would have made it the whole way if it hadn't been so hot that day.

Yesterday J decided he couldn't live without a foot long chilli dog from Sonic. Well we don't have a Sonic close by so we litterally made a day out going to get this hot dog. We got to Ferndale, which is almost to the Canadian border, he got his hot dog and I got popcorn chicken. Then we decided to take Chuckanut Drive back. If you get the chance to do this drive then do it. Its gorgeous. We even found a little state park with a fairly easy trail down to the beach. Even in my sick state I could handle it. So J got his hot dog and Cheffi got her walk, even sick.

The moral of this story is this: if you have, or ever aquire, a Cheffi, be sure to walk her every day. Its good for her, especially when she's sick.

BLAAAAAAARGH!!!!

Picture it! A 3 year old little girl wakes up on Monday sneezing her brains out and with a drippy faucet for a nose. She of course is too little to understand about covering her face when she sneezes. And she is also too little to wipe her own nose. I was as care ful as I could be, hand santizer galor! And yet, now I have the snot faucet nose, my throat feels like I swallowed sand paper, and I have a nasty cough. Uhg. I don't need this. Humph! At least I'm getting it out of the way now and not doing it when I'm supposed to go to Mexico.

Where do I even begin?

J and I decided to spend a chunk of his vacation in eastern Washington. So on Tuesday we packed up the car and headed for my parents house. I hadn't seen my mom since I was sick last summer (almost a year ago) and I hadn't seen my dad since December. I had never seen their house and neither of them had met J. So we stopped by their house for dinner. Dad grilled a salmon....mmmmm. We had a nice little visit and the parents got to meet the man.

Then we headed for Lake Chelan. I had never been there, and it had been a long time for J. I liked the town instantly! Its so cute! And the lake is GORGEOUS! I couldn't wait to get in it! But we had to find a place to camp...which took forever! Grrr. It seemed like every place on the map was full. Finally we found a spot about 2 miles out of Mansen, another little town on the lake. Too bad there were about 6 million mosquitoes! We got eaten alive by the time we got the tent up. And of course a few got in, but we got most of them killed by the time we went to sleep.

The next day we wanted to try and get a spot closer to town so we packed up our stuff again. We stopped and got breakfast, then went to a little park on the lake. It was still a little early to swim so we walked around a bit and met a one footed goose. We named him stumpy.

Then we went to the water park! For being a really small park it was pretty fun, and the price wasn't bad. We went on a few slides, had lunch, more slides, then headed back to the same camp ground we slept at the night before. This time we got a different spot though and I didn't see so many moquitos. Once we had camp set up we went back to town for dinner. It looked like a storm was coming and it was sprinkling by the time we were done with dinner.

From our campsite it looked like we were going to just be on the edge of the storm, but we were very wrong about that. It wasn't too long before were desperately trying to hold our tent together because the wind was so bad. It finally got to the point that we had to take it down. I got our stuff out as fast as I could while J held the thing together and kept it from flying off. We got the thing collapsed and threw the pieces in the trunk without caring how the went in there. J went to go rinse off in the shower after that and I hung out in the car. I think I was alseep by 11 o'clock or so.

And then I woke up in an ambulance. Well, not quite. I remember waking up just enough to notice that the sun was coming up, and rolling over. Then I was coming to in an ambulance with J looking like he just saw my head spin around in circles, and an IV in my arm. I don't remember asking but somewhere along the line someone told me I had a seizure. o.O Ok......that's a new one. I was really confused and had big gaps in my memory but the closer we got to the hospital the better it got, and by the time we got there I was pretty much back to normal.

They ran some blood work but nothing came up. They called my doctor in Seattle to notify him what had happened. Later that day the nurse called me and said she'd notify the nurse running PTC 124 and see about getting a nuerology appointment. The ER doctor said that 75% of people who have a seizure never had a second one, and that I may never know for sure what caused it. They gave me some ativan while I was there and told us to go home. The atavan knocked me out for pretty much the entire ride home. I pretty much slept all day, I kind of remember unpacking the car and waking up to eat, then going back to bad. If you have trouble sleeping that stuff will work, wow! I don't see how people who have to take it all the time function.

Anyway, it looks like I probably have to stop PTC 124 for good. Which sucks, but so do seizures! I am SO sore today, from my knees to my neck. I can barely move. I really hope this is a once in a life time experience. I'll keep you posted out there in internet land.

How to not go stir crazy.

So what do you do when you're disabled, not working, and therefore have no income? Well, personally I knit. I don't have the energy to clean my house from one end to the other all the time (or the desire). Sure I like a clean house, but between CF and fibromyalgia I really have to pace myself. I keep up with the kitchen pretty well (although I do need to mop, gotta find the Swiffer). I can usually keep up with laundry. J likes to vacuum so I never have to do that unless I spill something. So, I knit. It doesn't sap what energy I have, and it makes me feel productive since I'm actually creating something. I crochet a little too. When I get bored with knitting I'll crochet a few little toys. Those are fun and they use up scrap yarn. Here are some pictures of stuff I've done recently.

Kid sweater. My first sweater ever!

My first shawl. The kitties approve.

A sweater for me!

Baby blue dragon.

Little mousey.