Fear.

For the first time in my life I'm scared to be alone. This last seizure has me really worried. What if the new med doesn't work? What if I spaz out while I'm cooking? What if I can't think straight enough to call for help? What if I burn the damn house down!? I'm gonna go rock in the corner now.

Uhg, this again!

I woke up this morning to start my IV (I've been off and on IVs for 10 weeks!!!) and I was really out of it. It was like I was really drunk. I got into the fridge and the next thing I know some strange guy was looking down at me asking me questions. Things were REALLY fuzzy for me at that point and I didn't know what was going on. Somewhere along the line someone said that I'd had a seizure.

Joe had heard some louding banging around while I was in the kitchen. Then he heard a really loud thud and got up to check on me. He saw me on the kitchen floor having the seizure. He called 911 and got an ambulance right away.

During the ambulance ride I was really confused. I actually thought that I was in Chelan again, which is where I had the first seizure. I didn't know the date either. It took a while but slowly I started coming around again and was pretty much back to myself by the time I got to the hospital. Joe showed up a little bit later with one of my syringes of IV med, my purse, my coat, and clothes (I had been wearing a little nighty).

The ER got in contact with the neurologist I saw in September. He wanted me put on an antiseizure med. I got my first dose at the hospital. I'm not sure if it was that or just all the stress and weirdness but by the time I was discharged I was very sleepy. We got home around 11 I think and I went straight to bed and didn't wake up until 5.

Goodbye friend.

Four days ago my friend Gessner was taken off of life support. He had CF, he was a fiBro. I got to meet him in Boston in May. I've gone out to coffee with his wife, they're from Seattle. He had a massive infection that just shut down his body. I wasn't able to go to the hospital to visit because I'm on IVs for pneumonia. I feel bad about that. I know his wife understands, if anyone would its her. But part of me saw this coming, I knew that when he went on the vent he wouldn't come off of it. But still, I have no business wandering around the hospital possibly infecting people.

Gess was a good guy. One day chatting on facebook we compared CF tattoos. He's definately going to be missed by many people. But I do find it comforting that his corneas went to someone. His last act was helping someone see. I know that where ever he is, he's happy about that.

My xray experience.

So I went in for a chest xray. I'm a verteran of this process and I hate to change at the hospital. So I wore a sports bra under my tshirt. No metal, so no changing. I got checked in at the desk and the lady said "Oh you get these a lot, so you know the drill right?" Yup, I have a seat and wait for my xray person to call me.

My xray person called me in a couple of minutes and we headed back to the room. She then notices that I'm not wearing a humilating hospital gown. "Is there any metal in your bra?" she asks.

I say no. She says "No clasps or hooks or anything? Because I'd just have to have you change and redo the xrays which gives you more radiation."

"No metal, I get these all time so I know how it goes."

She takes the first shot of my back. Before she even gets back into the room I have turned around for the side shot and I'm holding onto the bar above my head. She kind of giggled and said "Oh! You really do know what you're doing!" Damn skippy!

Dear Lung,

Last year when you decided to get all pneumonia-y on me you didn't give me a single clue that anything was wrong until a large section of you collapsed. You've never been quite right ever since then. So when you started to hurt a little bit on Monday I wasn't too worried. Its happened before but has always gone away. However, this time it didn't go away. I would really prefer not to go through the hell of having you collapse again so I called the doctor. A chest xray was ordered which showed a small spot of pneumonia. So, while having you hurting me is not fun, and IV antibiotics are less than conveinient, I do appreciate the warning this time around. Now, please stop doing this like this from now on.

Mexico.

I know I said I would do a real blog about my trip to Mexico......but I just haven't been feeling it. So let me just say that I had a great time, the cruise ship was awesome, and I would definately do it again. I'm working on a new slide show to put that will probably put things into words better than I can anyway.

On another note, the night I got home from Mexico I ended up in the emergency room. *eye roll* My left lung started hurting. Last time my left lung hurt it collapsed and I ended up in the hospital for 4 days and on IVs for 3 weeks. So I didn't want to screw around with it. But I basically wasted 6 hours of me and J's time over nothing. Oh well. Better safe than sorry right? Now my sinuses are really bothering me.

I'm home!

I just wanted to let everyone out there know that I'm back from Mexico! I had an awesome time and I will do a better blog about it later I promise. I'm just wrung out from traveling, then a little while after I got home I ended up in the ER with chest pain. They were concerned because I flew so they wanted to rule out a clot. It turned out to be nothing and I went home. The pain is gone today but I woke up with a bad migraine so I slept most of the day. Welcome home right? Can I go back on the ship because I felt fine there!

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.

Multiple updates.

Nausea: Its still there. Its not getting better. Its been 6 weeks. I called the nurse running the PTC124 study and told her that I'm having a very hard time taking the med because I feel so sick most of the time. She talked to the doctor and they squeezed me in for an appointment today to see her. The doctor seems to think that its related to the study drug. The timing fits and the fact that its not getting any better no matter what I try would point to the drug as well. So, she told me to stop taking it for now and see if I get better. Apparently this company is very lenient (sp??) on this kind of thing and I can stop for a month without being kicked out of the study. If stopping the drug doesn't help then I have to go get tested to see if I have slow gastric emptying. I also got a perscription for zofran, YAY.

Cayston: The doctor doesn't want me starting anything new until the nausea is resolved. She isn't worried about the minor drop I had in my PFTs during my trial.

Dexa scan: There have been no changes in my bone density which is good. Its not getting better but at least its not getting worse! I have minor osteopenia of the spine, but not of the hip.

CF clinic today.

So I had a clinic visit today and it went pretty well. My PFTs are down a bit but I had to work like hell to get up a stubborn plug over the weekend so I've got some pretty bad inflamation going on right now. I'll be doing a prednisone burst for that. I still feel very clear (other than that plug) from the IVs though. So maybe that's a sign that the PTC124 is working. That would be really nice!

I've been having some nausea which, obviously, is really annoying. My symptoms don't seem to fit with slow gastric emptying, when I puke its within an hour of eating usually, not puking up dinner for or five hours later. It doesn't seem to corolate with any particular foods or times of day. They think I may be having some reflux but without a lot of they typical heart burn that goes with it. So I'm going to be trying a perscription reflux med and see how I do.

I'm going to try cayston too, to alternate with colistin. I don't know if I'll be able to get more than a month's worth though because I won't have insurance next month and Medicaid hasn't kicked in. So I might get a month and then have to miss the next cayston month. We'll see how it goes.

And my enzymes aren't being made anymore so I have to try and find something that works. I'll be going to zenpep 5's. We'll see. I hope I don't end up with horrible stomach pains.

She got lungs!!

Yesterday I woke up to the best news! My good friend and cyster Piper got her double lung transplant!!!!! Whenever I get to thinking about it I start to tear up. She's been waiting such a long time, and she's had to many calls that didn't work out. Once she was even brought to the OR and sedated when they found out that it was a no go. I can't even imagine how hard this has been for her and her family. But they held on through everything. And it paid off. I can't even describe how happy I am for her.

Considering what happened to Eva, passing away while waiting for lungs, this is absolutely the best news I could get. She should be off the vent some time today and I have no doubt that she will imediately ask to go for a walk. This cyster knows how important it is to move, she worked out SO much while she was waiting. She's really inspired so many CFers.

Piper, I know you'll continue to do awesome because you worked so hard to be ready. I love you cyster and I am so happy that you get to start a new life with your new lungs.

And let's not forget the donor and their family. This family turned their sorrow into celebrations for other families. They appreciated life enough to pass it along to others and that's an amazing thing. The donor family is in my thoughts, thank you so much for giving my friend a second chance, she needed and deserves it so much.

Epiphany.

After my fibromyalgia class (I think of it as a class, I'm learning a new way of life) today I had a huge epiphany. I used to be extremely athletic. I loved volleyball, I lived and breathed it. It was my passion. I was an athlete through and through. So whenever a doctor would get on me about excersising I would think "ok, I know how to excersise!" And I would go out and do volleyball drills, lift weights, and run. And then I would be in so much pain that I could barely move for the next week. I'd get depressed and discouraged. Eventually I just thought "I guess I can't excersise anymore."

Today I realized that I have to stop thinking about it as training. I'm recovering. Recovering is harder than training in every way. Its definately harder physically, as well as mentally and emotionally. I didn't think of my physical therapy after my shoulder surgery as training. I was trying to get better. They started me off small, then built on that once I gained more mobility and strength. This is no different. I can't jump in the deep end and expect to swim.

For the first time in years I have hope of getting better and getting back into shape. It might take a long time, and I'll probably have setbacks. But that's ok. I'm learning the skills I'll need to bounce back from those setbacks. I'm learning how to get better.

A quick post.

So I finished IVs last niht, YAY. Its always nice to be done with that. I'm feeling really good, haven't had anything to cough up in close to a week. I'm eager to see if I stay cleaned out longer since I'm on the PTC 124 study. It would be nice to get more than 6 to 9 months out of this round.

I really don't have anything else to report. Things seem to be holding steady and now that I'm done with IVs I'm lookin g forward to summer even more!

Feeling better

I'm through the first week of antibiotics and feeling much better! For the first few days I was pretty nauseas from the oral antibiotics I was on. Even reglan didn't help so we had to switch that to levaquin, which I tolerate better anyway. No more fevers, my cough is better, there is hardly anything to cough up now, the shortness of breath is gone too.

Today I had my port needle changed so I deaccessed myself after my morning IV and got a really good shower! I ran out of hot water because I was in there so long! I love needle change day, you don't get that little bit of freedom with PICC lines. I was able to exfoliate and shave my arm pits (very hard to do without getting the dressing wet). I try and take short showers with my port accessed because the longer I'm in there the greater the chance of getting my dressing wet, even when I cover it. Lets face it, tape is tape and doesn't like to stay on in water.

AAAAAAAAAAARG!!! Rant.

So I was having some nausea from my antibiotics, not too bad but enough that I didn't want to eat. So yesterday I called and asked for something. They called reglan in for me but only gave me 2 days worth because they wanted to make sure it worked or we were going to change my meds all together. Which I think is kind of stupid anyway because if I'm going to pay for a perscription then I want enough to get me through instead of having to pay it AGAIN later. Even if it didn't work I could still have it on hand. Whatever.

So today the other nurse at my clinic calls me to see how its going. I tell her the nausea is MUCH better so she says she'll get me some more to get me by. But here's the kicker, I only get a week's worth because according to her "its not a good med to be on long term." O.o Ok, and feeling like I could puke at any second is GOOD?? I'm on the freakin antibiotics for 2 weeks! What am I supposed to do for the other half?? Luckily I seem to only need half of what they perscribed so I can sqeak by.

The nurse yesterday was supposed to leave a not saying that I am switching pharmacies. I should have known something would get all fucked up dealing with 2 seperate people. I went to Target to get my meds. Well, apparently they DID call there, but said "Oh, wrong pharmacy!" and then called my OLD pharmacy! I swear, I hate these people. Its always something and I'm SO sick of it. And yet there is NO other clinic I can go to in this state without traveling to the complete other side of it!

IV time.

I've been debating for a while if its IV time. At the end of last week I decided that it is. I held off calling until yesterday though because Sunday was Great Strides. That was probably dumb, I can't believe I actually made it 3 miles.....with hills. Oh well.

I got scrips for oral cipro and double strength septra. A combination I hate with a passion, I get pretty nauseated on it sometimes. I also got IV ceftaz. Ceftaz works great for me so I'm happy about that. I do hate the every 8 hour schedule, never getting 8 hours of sleep at once sucks. But now that I'm not working I can take a nap whenever I damn well want to. If Joe is willing I'm going to teach him how to hook me up so he can start my first one of the day before he goes to work.

PTC124: Randomized.

Today I was officially enrolled into the PTC124 study and took my first dose! All I have to do now is stir 2 packets of powder into a little bit of milk or water 3 times a day. Its supposed to be vanilla flavored but I don't think it tastes like much of anything. It is a little bit bitter though, but I can deal with that. Let's just hope that I got the real thing and not a placebo!

Boston!

I'm having issues uploading a picture so I'll try again later, but let me tell you about my trip!

Earlier this year it was announced that there would be a belated memorial service for one of my CF friends who passed away in December. He lived in Chicago but had a lot of family in New England so there was a memorial held for him in Boston. Since there was so much advanced notice about this many of my totally awesome online CF friends decided to attend.

I flew out to Boston on Thursday. First I flew to LA then to Boston from there. I saved a lot of money doing it that way so it was worth it to me not to take a direct flight. It was a long day and landing in Boston I got REALLY air sick, which never happens to me. But I got there!

My cyster Amy picked me up at the airport. We had a little issue of not being able to find each other for a while, but eventually we did. Its actually pretty funny. Amy hasn't lived in the Boston area very long so she doesn't know the airport very well yet and I had NEVER been there. Yeah, we made a great team!

The hotel room I got had a kitchenette (I mostly wanted that to make cleaning my nebulizers easier) so we stopped off at a grocery store for provisions. As a CFer I cannot live without double stuffed Oreos and whole milk. I got checked into my hotel room. I was sharing with two other cysters but they didn't get in until Friday evening so I had it all to myself the first night. Amy had some leftovers that she brought for me, which was totally awesome because I was exhausted and didn't want to deal with getting food or, heaven forbid, cooking. I got my essentials unpacked, ate, and crashed. Amy let me borrow her portable oxygen concentrator which was awesome! I didn't have to spend money on renting one or deal with it on the plane.

In the morning when Amy and I had both gotten up and ready she came to the hotel (only 10 minutes from her place) and we headed off for adventure! We took a drive up the coast first. Its so gorgeous there! I love all the victorian houses. Then we headed into Salem to see some witch stuff. We went to a museum that does a live reinactment of a witch trial and has a replica of the dungeon where all the "witches" were kept. I learned some really interesting things about that time period that I hadn't known before. I picked up a shot glass for my collection too.

Then we headed over to Amy's for a bit to relax and have dinner. Next it was off to Shawn and Tina's for a little CFer gathering! Shawn had his lung transplant about a year and a half ago, so he is the second post-transplant CFer that I've met in person. Tina is his wife and she has more personality than anyone I know! She's awesome to hang out with. She also had all this really yummy food so I can't argue with that at all. And there dog was cool, I wanted to take him home.

After a little while the others started to show up. First was my cyster Talana. You may recall that we went to Vancouver, BC in October. It was so awesome to see her again! She was also one of my roommates at the hotel. Next was Graves and Patti. Graves lives in NYC and took the train up to Patti's in upstate NY then rode with her out to Boston. Patti had a double lung and liver transplant three years ago so she is the third post transplant CFer I've met! She was my second roommate for the trip! Graves' best friend passes away from CF a few years ago and he is now in school to become a resperatory therapist!

We all had a great time hanging out IN PERSON!!! These people are my second family, which might sound weird considering this is the first time I met most of them, but keep in mind they are a part of the CF world which is a very exclusive club. I've known most of them for years via the internet.

Saturday was Paul's memorial service. Talana and I missed the grave sight service because she was exhausted from traveling all day the day before and we stayed up late talking. So we both needed to sleep in. But we went to the mass that was held at Boston College. It was a nice service, my first Catholic mass, so don't ask me to give details. I was a little lost most of the time. We did all agree though that it was nice to know that no one would be bothered by our coughing.

After the mass there was a luncheon that was arranged by Paul's family. There were about 17 CFers there. It was the largest gathering to date from our website. I got to meet so many more CFers and many of their significant others. After lunch we all went outside to take a group photo (that's what I've been trying to upload). Then we all stood around chatting for a while.

There was a party for the release of Paul's CD later that evening but not everyone attended (me included). I was pretty worn out from traveling and everything and just wanted to take it easy. But a bunch of us (Patti, Graves, Talana, Kevin, Bill, and me) went back to the hotel to hang out for a while and cool down (it was WARM). Then we all went to get Chinese for dinner. The place we went had great food and there was a plaque on the wall saying that they support CF! Since our hotel had the kitchenette and Talana and I were going to be there for a couple more days we got all the left overs too!

On Sunday morning me, Patti, Talana, and Graves hung around the hotel for a while and then Patti headed home. Graves was taking the train home from Boston but it didn't leave until 7:00 pm so him, me, and Talana headed into Boston for the day. We met up with Cheryl and Malora. Malora has CF and Cheryl is her mom. They live in the Boston area so they were able to show us around. We ate at Cheers first. It was a really hot day, Cheers was all glass (think big green house) and on Saturday there had been a water main break west of Boston so there was no ice for our drinks! So that kind of sucked but the food wasn't bad.

Cheryl and Malora took us to the Old North Church which is were the latern was lit that signaled Paul Revere's ride. Then we headed toward the water because it was SO hot. We spent quite a while there because it was so much cooler. When we headed back toward the garage where we parked the car we got some ice cream which was perfect. There were some shops around so we did a little shopping for souveniers. I got another shot glass, a tshirt and a beer glass for J, a plush lobster for J's daughter, and lobster cat nip toy for Missy and Mouse, and a bottle with sand and sea shells for J's son (he loves the beach). After that we were tired so we left Graves with Cheryl and Malora since they could take Graves to the train station. Talana and I stopped for salty snacks on the way back to the hotel so we could replenish what we had sweated out. That night we just hung out and ate left overs since we were both tired.

On Monday we got together with Amy again and headed back into the city. We were going to check out the ship where the Boston Tea Party happened but then we found out that it was closed for renevations. So we got lost in downtown Boston and then found the Boston Common. Its basically a park in the middle of downtown Boston. There was some sort of military even happening, the marines were there with a bunch of planes and helicopters. We walked around the park a bit and then rested for bit (it was REALLY humid so we were all having a little trouble breathing). It started to get windy and it looked like rain so we headed back up to the hotel. That night Talana and I got our stuff all packed up and ate at Friendly's. Its a diner place that all these crazy ice cream desserts! I think I gained 5 pounds just looking at the menu.

On Tuesday morning we got up early and headed to the airport. My flights were good. There was one place where we hit some turbulance and dropped so fast that I was lifted out of my seat. I almost had a heart attack! Other than that one moment though my trip was fine. I made it home around 7:00 pm and got to see my J, and my kitties! The cats LOVE the catnip lobster! I didn't know it but Mouse doesn't usually care about catnip but he was all over that thing. In less than 5 minutes he had it soaked in spit. He kept playing with it all night and even woke us up a few times. Missy kind of played with it a little but she didn't like it as much as Mouse does. It was really funny.

Today I'm pretty sore. Flying is really hard on my fibromyalgia, but I am taking it easy and relaxing. I had a great time in Boston but its nice to be home and sleep in my own bed! Missy kitty has been loving on me all day. Since today is Cinco de Mayo J and I are going to go out for some Mexican!!

Troll Stroll!

So about a week ago I was over at my apartment cleaning and sorting through the few things that were still there and I was listening to the radio and making a fool of myself singing and dancing through my chores. Well the DJ came on and said that the 106th caller (the station is Kiss 106.1) would win tickets to the Troll Stroll to benefit the Cystic Fibrosis Foundation! Well I was all over that! I fumbled around trying to get my phone out of my pocket, dropped it, tried to catch it but only suceeded in hitting it half way across my apartment. I snatched it up and started dialing. Busy signal. Thank goodness for redial. I must have called 10 times and was about to give up when the DJ answered the phone! I won the tickets!! WOOHOO!!! I talked to the DJ for a couple minutes, told him how stoked I was since I have CF, and it turns out his cousin had CF. Unfortunately the DJ was going to be working so he couldn't go to the Stroll.



The Troll Stroll is a pub crawl. It takes place in the Fremont section of Seattle. This year 12 bars participated. We got a t-shirt and drink tickets for all the bars good for a 7 ounce beer. Each bar had several beers to choose from. We only made it through 6 bars before we got sick of all the screaming college kids and I started to get drunk. But we had a really great time! Each bar also had specials on food and donated part or all of the proceeds to CF.



You're probably wondering why on earth they call it the Troll Stroll. Well, under the Fremont bridge is this guy.

PTC124, my thoughts.

So here we are on the verge of a potential cure for CF. Its the thing that I've been hearing is 10 years away for my entire life. And I don't know how to feel about it. Assuming this works would I want it? Now, before half of you out there in blogger land read that and flip out let me explain.

I can't seem to decide how I feel about remaining exactly where I am for the rest of my life. If this works I'm looking at potentially 50 years of THIS. By this I mean mid-50s lung function. Sure I could regain some function back without having mucus plugging up my airways but the damage that has been done isn't going anywhere. Do I want another 50 years of struggling up a flight of stairs, panting while doing laundry, and walking a step behind everyone because I just can't keep up. I might complain about my health but I've never been angry about it because there was always the option of a transplant somewhere on my horizon. I would think "I might feel like crap now, but someday I'll have new lungs and it will be worth it." Would I like to live another 50 or so years? Sure. But do I want to live another 50 years feeling like crap? I'm not so sure that I do.

I'm doing this study for all the CF kids who might benefit from it. For the ones that haven't been born yet. This drug might not do a thing, but if it does work there are some kids somewhere down the line that will never have to ask themselves if they want to live the rest of their lives with half their lung function. They'll just live, and CF won't take away their dreams, or their lives.

PTC124 Screening.

Today I was screened for the PTC124 study. If you haven't heard about this one yet then check this out: http://www.ptcbio.com/3.1.1_genetic_disorders.asp

So this drug is pretty promising for people with nonsense mutations (which I have one, yay me!), it has the potential to turn me into a carrier rather than a CF patient. I'll write up another blog in a day or two with my personal thoughts on all this, today I want to cover what's involved in the study.

My day started with fasting (everyone's favorite right?) for my blood work. I got to the hospital around 7:40 and ran to the coffee stand for an extra hot latte so that I could get my coffee fix as soon as my blood was drawn (I live in Seattle, gotta set your priorities). I signed the consent forms and my nurse got set up to access my port for my blood draw. Luckily she was able to get it on the first shot (you may recall past troubles with that). Its so nice having a port to do blood draws from!! I think there were about 9 tubes of blood and my veins poop out after about 5 so one poke and done is GREAT! I had ordered breakfast just before my blood draw so by the time we were done I could eat (yay!).

Next came some pretty standard medical history questions, then an NPD. If you don't know what an NPD is check this out: http://www.hopkinscf.org/main/whatiscf/diag_testnasal.html
We had a really hard time with my NPD. Part of my sinus surgery in December involved turbinate reduction, meaning they just cut away some tissue to widen my nasal passages. The problem is that without that turbinate tissue there wasn't anything to hold the catheter in place to do the NPD. They couldn't get it all on the right side, the stupid thing just would NOT stay in. On the left side they couldn't get it to the last measurement without causing me serious pain. It felt like a gremlin was in my nose going nuts with a hot poker. They think I might have a polyp back there that they couldn't see. They were able to get it to stay in at the median point though and got the test. Luckily the company said they would accept it on one side or else I would have been out of the study before it even really got going! This was also with the 3rd catheter they tried! My sinuses have been burning since then. I've had NPDs before and they weren't nearly this bad, so don't let my horror story keep you from doing it.

The doctor came in for a quick exam and then I had PFTs, which we all know is a pulmonary function test. Mine were right at baseline in the mid 50s.

After lunch the nurse showed me the phone I'll be using to keep a diary of my symptoms. I have to do it every night while on the study (a year!) but it just takes a few minutes. I did a test run while I was there. It asks about my activity levels, cough, and appetite mostly. It has an alarm that goes off every day to remind me to do my diary. For every day I do my diary I get a point, my points add up and I get to redeem them for gift cards! Sweet! The phone they give me is pretty cool, too bad I don't get to keep it and they have most of the functions disabled.

Then I had a sweat chloride test. I haven't had one of these since I was a baby so I don't know what the process was back then, but these days its pretty cool. First they put a couple of electrodes on my arm that activate my sweat glands. Those stay on a for a few minutes and then they put a little collector on there. It collects my sweat, then when there is enough they draw it out and put it into a little vial to be sent off and tested.

Next was radiology! I had a chest CT and a renal ultrasound. Good news, I have lungs and kidneys! When I got back up to my room I got hooked up to a vest thing that recourds my coughing. The vest part isn't too bad, it looks like a workout shirt, but it hold all the wires that run from a collar with a microphone on it to the actual little device that does the recording. Then I have to carry that around in fanny pack. This really is kind of a pain. I have to wear this thing for 24 hours which means I get to sleep in it. They gave me a pillow with a pocket in it for when I sleep so I won't roll over onto a hard plastic lump. I can take it off to use my vest though.

You might be wondering why this study is SO intensive. I mean, why a sweat chloride test and an NPD when they already know I have CF? This is what the doctor told me. The company wants to get this drug through the FDA. This drug shows a huge amount of promise for the 900 or so people on the ENTIRE planet that have one of the nonsense mutations. They are looking for ANY positive changes in ANY of these tests to take to the FDA to push it through. If my sweat chloride number goes down it could mean the drug works (assuming I get the actual drug, not the placebo). If my CT improves the drug could be working. This company is trying hard to push a drug through that they will make very little money off of. 900 people is not a very big market after all.

Been busy!

You'll have to exuse my lack of posting lately. I've been so busy moving in with J, and this past week I haven't felt very good. Nothing too bad, just off. I had a bit of a sore throat and some post nasal drip for a few days. Thankfully that went away! Then yesterday I had a horrible stomache ache! I really think I was on the verge of a bowel obstruction. But I took a lot of Miralax and it seems to have done the trick. I feel MUCH better today.

Today was pretty nice so we took the little one to the zoo. That was fun. I LOVE the zoo. A lot of the animals were out and about.

I'm looking forward to my trip to Boston and meeting so many of my CF-world friends!

Inspiration.

Inspiration can come is so many ways. But the biggest inspiration in my life is Eva Markvoort. A little history: Eva had CF and lived in Vancouver, BC Canada. At the age of 23 she recieved a double lung transplant. During the process, the waiting, the surgery, the recovery, and post tx life she was the subject of a documentary called 65 Red Roses. She also has a blog with the same name that is followed by thousands of people across the world. In October of last year I got to go to BC with my friend and see the film and also meet Eva. She is the first post-tx CFer that I have met. At that time she had recently been diagnosed with chronic rejection. She had to use oxygen frequently and had moved back home. Shortly after that she was re-listed for a second double lung transplant.

I have followed her blog for a long time. It is so eloquent and her personality comes through loud and clear. I wish I was as good a writer. Eva passed away a few days ago. She had been in the hospital for about 2 months and was actually told a month ago that she only had a few days left to live. She held on for another month in desperate need of those new lungs. They didn't come in time for her. Tomorrow would have been her 26th birthday. She was 2 years younger than me.

Eva was the most alive person I've ever met. Even being so sick she was so passionate about life, love, her family....everything. How can it be that such a person is gone? How can it be that the fire she had has died? I never doubted that Eva would get her transplant because it was Eva! There are very few people on this earth as deserving as she was. I feel so priveledged to have called her my friend. I find myself crying for her sometimes because I just can't imagine the world without her. It hasn't set in yet, and I don't want it to. When that happens then it will be all that much more real. A part of me is glad that she can breathe now, and dance, and run. She is with all the others that have gone ahead. I hope she gave Jenn a big hug for me. She is watching over all of us who are still here. Part of me is comforted by that, by the fact that I have another Guardian. But a bigger part of me is selfish. I want her here, even sick at least she would be here. I could check her blog and read one of her magnificent poems. She could get those lungs and when she's recovered I could go visit her.

But that won't happen. I plan on going to her service when I find out when it is. I want to hug her family and tell them what she means to me. I want to cry with them and share with them. I want them to know that they are in my thoughts. I want to be with others who have been cut just as deep as me by this. I want my Eva.

Eva.

Breathe easy now cyster.

Busy!

Forgive me if I don't post much in the near future. I'm getting moved in with J so I am busy packing, moving stuff, and cleaning. We brought the cat over the other day and that has been an adventure. She hates new places to begin with, but to top it off there is another cat here so there is major friction on that front.

I brought all of my meds and supplies here last night so I don't have to do the treatment juggle. That will be nice. I took up 2 shelves in one of J's cabinets with all my meds, suppliments, and supplies. Plus there is the vest adorning the dining room now, and the nebulizer. I am slowly taking over this place!! Muahahaha! Just kidding!

Clinic

So I had CF clinic on Monday. Everything went fine, same old stuff mostly. I have GOT to start getting some exersise though (I knew that already). But its so hard when you have chronic pain. I played with J's daughter on Saturday and have been paying for it ever since. Everything hurts. I see the pain specialist tomorrow so hopefully we get somewhere.

I got new perscriptions since a lot of mine expired. Hopefully I actually get them this time! I asked for a new perscription for hypertonic saline in January and they never sent it in.

A big sigh of relief.

So Friday was my last day at work. I took a voluntary lay off so that I can FINALLY go on disability. The ball is already rolling on that, the CF legal hotline is going to help me with my application.

It was just getting to be too hard. I would drag myself out of bed, drag myself to work, drag through my shift for work, drag myself back home, flop on the couch, drag myself to bed, and start all over again. I was so tired all the time. I wasn't doing my treatments the way I should, I couldn't clean my apartment, the thought of doing laundry was too much. Now I don't have to worry about all that. I can just do what I need to do.

Great Strides!

Visit my team's page! We (ok so far its just me) are called the Twisted Cysters!

I know many of you might have your own teams, or teams honoring you and that's awesome! But if you don't please spread the word and get everyone you know to donate! Even $5 helps!

Pain appointment.

I finally had my pain clinic appointment today! 3 months of waiting. And I'm unsure about how it went. The down side is that the pain clinic at my hospital mostly just consults with other clinics, and I went there because I wasn't getting anywhere with rhuematology! Uhg! I got some information on a research study that the doc thinks would be good for me. And he's going to send me an email about research done on lyrica in high doses to see if I want to try that. I go back in 3 weeks, we'll see.

Spring comes to Seattle early....

...and it makes me cough! I love spring, I really do. It warms up, the flowers start to pop, the sun is out. And the cherry trees start to blossom. I hate those things! They're gorgeous, but they make me miserable! I never quite know how its going to present itself. For years I'd get a sinus infection. Lately it makes me cough, a lot! Uhg!! Make those things quit!

Another friend is leaving.

Over the weekend I got the news, through her blog, that Eva doesn't have much time left in this world. You may remember that Eva is the transplanted CFer who I met in October when the documentary about her (65_RedRoses) was shown at the Vancouver International Film Festival. She has been in chronic rejection since the end of last summer and waiting for a second transplant since October. Unfortunately that second transplant has not come, and now she is too sick.

Eva is the most alive person I have ever met. She is so happy and grateful for life, her family, and her friends. As saddened and heart broken as I am to hear this news, I am so happy to have had the chance to know her and be her friend. She broke the news in a video with her parents and sister. In it she has a smile on her face and she says that she is not sad about it. That's how she is, happy, bubbley, ALIVE.

I've been reflecting on this now for 3 days. And its just not fair. Her story wasn't supposed to end this way. I never had a doubt that Eva would get another transplant. I mean, its Eva we're talking about here! But now of course reality comes crashing down. People die every day waiting for organs. Please, become an organ donor! Its not enough to have it on yur drivers license either. ou need to tell your family, put it in your will, and register as an organ donor. Follow this link to find out how to register in your state. www.organdonor.gov/donor/registry.shtm

As of right now I do not know Eva's condition, but you can leave her and her family a message by visiting her blog at www.65redrose.blogspot.com

So while the world is focussed on Vancouver for the Olympics my heart and my thoughts are there with my friend and her family. All I can do is hope for a peaceful final journey for her, and whatever comfort can be had for her family. I love you cyster, give the others a hug for me when you get there.

Back to Baseline!

Its been a crazy month so far! I haven't had to time to update like I should. Anyway, I finished up some oral antibiotics last week for a sinus infection and crackly left lung (you will remember that this is the lung I had pnuemonia in and I was crackly in the are where it collapsed so I did NOT want a repeat of that!!). I went in for post-abx PFTs and I blew a 56% FEV1!! I haven't had numbers that good since before the pnuemonia!!! So it took 6 months but I clawed my way back to baseline. So I would like to express my appreciation for modern medicine, antibiotics, the vest, hypertonic saline, and everything else that keeps me ticking!

In other news my general pain has been pretty bad. I have no energy. But I only have 2 more weeks until I go to the pain clinic and hopefully they can do something for me. I started a journal about my pain, where it is, how bad it is, what I do for it etc, on a daily basis so that I can take it to show them. I am also coming armed with a list of questions and things that I would like to try based on research I've done and things other people with fibromyalgia have told me. So I will be fully prepared to attack them with all of that! They can't accuse me of sitting idly by and doing nothing these months that I've been waiting for this appointment!

My new dude.

So, I am seeing this new guy, J (won't use his name without his permission) and so far everything is good. Its only been a couple of weeks but I really like him. In two weeks I already know where I stand with him (unlike after 2 years with D I had no clue) because he isn't afraid to say so. No, he hasn't said the L word, but he does tell me I'm cute, and beautiful. He tells me he misses me, and that I make him feel good.

I suppose I should give some vital stats about this guy. He's 32, with 2 kids (his son actually isn't his biologically but he has custody because his mom bipolar and gets unstable) his son is 11, daughter is 2 1/2 and totally adorable! He is an installer at Car Toys (think car stereos, alarms, TVs, etc), and he's a Libra like me! Our birthdays are 3 days apart.

Anyway, I really like him. I think he's one of the most handsome men I've dated for sure, so that helps! I don't mind at all that he has kids, in fact its great! Since I decided that for my health I won't be having kids I can borrow his! Oh, and he cooks! And what he cooks is not only edible its really good!!

He also took it upon himself to research CF. I think he's the first guy I've dated that has done that. So he knows how ugly this disease is and he still wants to be with me!!

Kiki!

This is Kiki. I got her from a guy on the USS Lincoln which will be gone most of the year, so he couldn't keep her. She is almost blind and when I heard that she might go to a shelter I snatched her up! A shelter would just put her down since she is disabled and no one would adopt her. She is a lovely, sweet kitty so I couldn't let that happen.

Port drama

So on Monday I went to have my port flushed. The nurse and I swore she that she was in but we couldn't get a blood return. So, I called UW and they got me in to see the PICC/port nurse today. She could flush it, and I could taste the saline so she was definately in. She flushed me with heparin really good and let me marinate for 20 minutes. Still no blood return. So on to TPA. You may recall from August that I had to have my last PICC TPA'd. Its an enzyme that dissolves clots. The nurse thinks that my last antibiotic clogged it up. Well, that had to sit for 2 hours so I went and ate and worked on my latest knitting project. And when I went back we got blood!!! Yay!! So I am back in business.

Bleh!!

Sinus infection. Crakly left lung. Antibiotic. Insomnia. Can I be done now?

New Hair Do.

As a fellow Raveler put it, I got a revenge make over. There's nothing like looking in the mirror, seeing that you are in fact, pretty, and knowing that your ex fucked it all away and that's HIS problem. So this is my new hair. I like it, she did a good job on it. I might even go shorter. I've always liked my hair on the short side anyway. Its so fine that when it gets long its just weighed down and limp. This is better, it has some oomf!! And everyone likes it!

I'm doing ok I guess. I still have some depressed moments where I miss him. But not all the time, and much less than at first. I actually have a date tonight. I'm not sure if I'm really ready for it, but I have to get back out there sooner or later. I just hate dating. I like to be in a relationship. I like knowing that that special other person is a phone call away for any reason. And I guess its comforting to know that if I get sick someone will come and help me.

Its over.

So D and I are done. He didn't even have the balls to call me, he sent me an email. In a nut shell he said he was sorry for not being able to tell me how he feels, its one of his biggest faults and he's working on it with his councilor. He also said he's not ready for me to follow him somewhere. So that was it. I sent him an email back saying that I hope he finds what he's looking for and that I hope he has enough respect for the next woman to act like an adult and tell her how he feels.

I'm pissed, I'm hurt. I feel like the last 2 years was a waist. He still never even told me what I was to him. I guess I kind of knew all along that I loved him more than he did me, if he even loved me at all. But that doesn't make it any easier. I feel stupid. I guess its asking a lot to have someone feel the same way about me as I do about them. I can't seem to get on the same wavelength with anyone.

Part of me wants to start dating right away, but then I know that right now I'm not in a good place for that. I know it wouldn't be fair for me to start seeing someone just so I could make myself feel better about being me. What if Mr. Right gets away because I'm not ready to love him yet? Besides, right now I can't imagine myself with anyone else. I don't think that I could be with D even he had a sudden change of heart, but I can't be with anyone else yet either.

Questions, and no answers.

So last night on facebook chat D got to talking about getting new orders in a couple of months and probably moving out of state. It sounds like there's a good chance he'll get San Diego. So I asked him what happens to us then. He said he doesn't know. He's given it some thought but hasn't come to any conclusions. We've been together for 2 years and he doesn't know what he wants to happen if he moves away. I was pretty upset by this. Then he changed the subject (later he said that he hadn't meant to, pffft).

After a few minutes of random conversation I said that after his nonanswer I was going to go because I wasn't in the mood to talk to him. He said he was sorry and that he knew I was pissed. We talked about it a little more before I said that I am sick of being the quiet girlfriend that doesn't ask about these things, I'm sick of only seeing him once a week, and that I am really fucking sick of not having any clue how he feels about me. After a LONG silence he said that he was confused and doesn't know how he feels about anything. So I told him to call me when he figures it out. Then he signed off.

So I have even more questions than when the whole thing started. I still have no idea if I've just been someone to fuck or if he's madly in love with me. Although I seriously doubt the latter. If he loved me, really loved me, then none of this would be an issue. I had hopes though, stupid hopes. He used to tell me how much he missed while he was gone. He bought me a nice watch, a diamond tennis bracelette, and a new computer. None of which had to be cheap. Not to mention he drives an hour and a half almost every weekend so we can see each other. So I suppose I fall somewhere between "sex toy" and "soul mate". But where?

And even if he does come to the conclusion that I am his soul mate am I so sure that I still want to be his? I mean, I love him, this wouldn't hurt so bad if I didn't. But after this could I really find it in me to take him back? Wouldn't I just keep thinking about it, and question him? Would I really ever be able to trust him with my heart again? More questions I don't have answers for.

And another thing. Why does stuff like this always seem to happen to me? Either I'm with someone who's madly in love with me but I don't feel the same, or the other way around. Can't I just find a guy who is wild about me and I'm wild about him?

In conclusion: I'm pissed off and mystified, not a good combination.

Sensored.

So on Monday I went to the diabetes center to get this sensor. It checked my blood sugar every 3 minutes. I had to log every bit of food that went into my mouth and any drinks containing carbs and how much insulin I took. Then today I went back and got unhooked and they downloaded the data. It showed that at night my blood sugar almost doesn't change at all. The line on the graph was almost totally flat. This is good, it means I don't need a long acting insulin. It also showed that I could use another unit or two of insulin in the morning. My nurse practitioner said that I might be a tad more insulin resistant in the morning from having all the waking up hormones pumping into my system. She said that over all though I do a good job of knowing how much insulin to take for what I eat. So as of right now just add another unit with breakfast, two if I eat more than usual. I go back in April.

My awesome Christmas presents!

So I got my presents from D late because the place he ordered them from was lazy. So we had Christmas on New Years Day! I got him a new DVD player because he had this old clunky DVD/VCR combo that was really touchy with the DVDs. But he wouldn't replace it because he had a copy of Pulp Fiction on VHS and its his favorite movie. So I also got him a copy of the collectors edition of Pulp Fiction on DVD. Then I got him a t-shirt with a hoopty ride and a couple gnomes. It said Ridin with my gnomies on it. He's into gnomes.

He got me a cooking tutor for my Nintendo DS! Its very cool, I can make shopping lists on it based on the recipes, exlude things I don't like, and there are TONS of recipes on it! And, best of all; he got me a new Toshiba laptop!! My old one had been rebuilt and given to me. While I really appreciate that from the friend who gave it to me, it was old and slow. So this is so awesome!! I can actually stream video now! Yay! Thanks babe!

2009

Since we're saying good-bye to 2009 I thought I would take a few minutes to reflect on the year. And unfortunately its the bad stuff that seems to stand out. There were too many deaths for starters. D's sister, B's mom, Jenn, Courtney, Ginger, Paul, and Mel. The last 4 in the last 6 weeks of the year. Then of course D was deployed again, and that was just as hard if not harder than the 2008 deployment. I was diagnosed with CFRD. My fibromyalgia has been out of control most of the year. I had my first hospitalization for anything CF related, and it was a whopper. You may remember the partially collapsed lung causing me horrible pain. And my cat dissappeared. So with all this stuff hanging over the year, lets talk about the good, even if it was small.

I got my new teeth!! YAY! I had sinus surgery (I know that seems like a bad, and it did suck) and now I can breathe through my nose and I get results from sinus rinses!! D came home!! I got my CF tattoo that I'd been dreaming of for years. I got my port, no more PICCs for me! I got back into knitting and crocheting. I got to hang out with my friend Tally for a weekend before she moved. On that trip I got to see 65_RedRoses and meet Eva. I made a trip to the CF center in Denver. I bought my first digital camera! I got oxygen after 13 months of fighting with my CF doctors. I found a new primary doctor that I love. I taught myself to knit socks. I went to a ZZ Top concert.

So there 2009! You threw a lot at me. But I'm no worse for it. In fact I'm better. I was reminded of how important my friends and family are, and I told them so. And as much as I miss those who passed away, I know that they are watching out for me. So I came out on top once again. 2010 will bring new challenges and heart aches, but I can handle it. With the love and support of my family, my friends, and my cysters I can handle anything.