Wednesday, May 26, 2010

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.

Thursday, May 20, 2010


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!

Tuesday, May 18, 2010

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.

Tuesday, May 11, 2010

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!

Wednesday, May 5, 2010


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!!