Sunday, October 25, 2009

He's coming home!!

D should be home some time next week! I can hardly contain myself, I am SO excited. He really is an amazing man. He's so good to me, and good for me. He talks with me, and listens to what I have to say. He makes me laugh, and I'm not afraid to share the bad things with him. And he shares the bad things with me. I really love him, in a way I never thought I would love anyone. He makes me feel safe. And I guess in the end that's what we're all looking for right? Someone who will be there when you need them, and do their best to make it better.

When we're together I can forget about whatever drama may have happened at work, what my future with CF looks like, and I have less pain. The rest of the world goes away and its just us. We watch a movie, eat dinner, cuddle, and......other things. Haha! I guess I'm saying that we're on the same wavelength. We're very in tune with each other. And I miss him. I can't wait to see him!

Wednesday, October 21, 2009

The women of CF.

So I've had this idea banging around in my head for years. I want to do a Women of CF calendar. I want it to be what would normally be a calendar of semi-naked women in various suggestive poses, except wearing vests, showing accessed ports, PICCs, g-tubes, the classic CF "baby" belly, transplant scars.....etc and so on. I would want the pictures to be professional quality. And think themes too, Christmas, Halloween, get the idea. So what do you think ladies? Would you be willing to help me out with this? I am thinking of having one picture for each day of the year. I'm not too particular about them being in color or black and white, just as long as CF and your various devices are well displayed.

I would also love any help you could offer in the way of raising funds to get the thing printed. How to go about getting someone to print it. And writing a legal release form for the use of the pictures. Obviously the funds raised from the sale of the calendar would go to CF.

Tuesday, October 20, 2009

Port Flush

So I had my port flushed for the first time today!! It was interesting. It all started with my bus not showing up, so I had to walk about a quarter mile to catch a different one and was going to be seriously late! So I called the infusion company to let them know all this......well it turns out that the lady I made my appointment with never actually put it in the computer. So they squeezed me in. I had some issues with them the last time I did IVs, so I may ask to switch companies. The only problem with that is that I LOVE this one nurse. She is so nice, she comes in to work and always asks how I am. She offered to show me how to access my port. She took my tempurature on Sunday when I felt like crap from this weird foot thing.

Anyway!!! So I get there and the get me all set up. Swabbed me down with anticeptic and stabbed me with a huge needle! And she missed! Uhg! So she pulled that one out, I held some gauze on it while she went to get another needle. She came back and we started again. This time it felt like she drove a nail into my chest! I swear I almost hit the ceiling. The first one wasn't bad at all, the second one was horrible! I somehow managed to not jump off the chair though. At least she got it that time. They never sent me any lidocaine so she said she would put in a request for that for me. Now you guys know that I'm no wimp when it comes to needles, hell I give myself 3 or 4 shots a day! But I am going to wimp out next time and use the lidocaine.

I'm still glad that I have my port. I know that its going to make my life MUCH easier when its IV time. The pain didn't last that long, so anyone out there who is thinking about a port I would still encourage you to get one. Just ask for some lidocaine for your flushes! I just want to be honest in my posts. Life isn't all sunshine and roses and I'm not going to pretend it is.

Monday, October 19, 2009

Updates and randoms

Hmmm. So I've been working lots. Very tired. I got what is probably a spider bite on my foot. This does not make work easier AT ALL! I have been limping around for 3 days. My foot is all gross and red and swollen. Like this.

I drew the line around it so I could see if the redness was spreading. I'm pretty sure I had a fever yesterday. I was either freezing or roasting all day. I felt like total shit. I was sea sick too. Dry heaves and everything. All I ate all day was maybe 2 handfuls of pretzels, 5 bites of a frozen dinner, and a 7up. Hurray for 7up! Nothing better for a distraut tummy. And enough sugar so that I didn't have a massive crash of the old blood sugar. I slept FOREVER. I got some antibiotics at the walk in clinic just in case this is some kind of infection.

D should be home in about 2 weeks!! I can't wait to see him! Its been almost 6 months. Can you believe that? I miss him SO much. So much has happened! I got my new teeth. I had my first admission for CF. When I was in the hospital and in pain, and sleep deprived, and just miserable I would have given anything to have him there. Having him crawl in the bed next to me with his arm around me would have been so comforting. He told me that he wished he could be there for me and that really touched me. It gives me confidence in his ability to handle me and all my issues.

Fall is in full swing!

Gorgeous huh?? I love fall. Its all sweaters, boots, pumpkins, hot apple cider, Halloween, Thanksgiving, snuggling, and the trees! Such pretty colors. I wish the leaves didn't have to fall off.
I'm having my port flushed for the first time tomorrow. Stay tuned for a post about that!

Sunday, October 11, 2009

65_RedRoses in Vancouver, BC

This one speaks for itself.
Eva with the directors of 65_RedRoses.

Me, Eva, and T. One our friends is in the hospital and her birthday was the day of the movie so we got this shot for her.

This sign was outside of the restaurant and brewery where we had lunch on Saturday. T had some yummy lobster ravioli and I had tasty fish and chips!

A view from the water front.

What an amazing weekend! My friend T invited me last month to the premier of 65_RedRose ( ), a documentary about her friend Eva and her journey through transplant. I of course said I would go! I got my passport, a new dress, and was ready to go!

We went to BC on Friday. She picked me up on her way from Eugene, OR. We got asked about a million questions at the border. I'm still trying to figure out what T working or not working has to do with us going to Canada. Same for Eva. So they finally let us through and we headed for Vancouver! We found our hotel, wresteled our luggage up on a luggage cart. You'd be suprised how much crap a CFer requires for a 2 night stay. Once we got some what settled in the room we hopped online and into the chat room. Many of the CFers that go to chat regularly were quite jealous that T and I got to be there. Pretty soon we went in search of dinner. We quickley discovered that the only things available in that neighborhood at that time was sushi and pizza. So we picked a sushi place that looked good and stuffed ourselves.

We slept in on Saturday and took our time getting ready to head out and explore the city. We did a little shopping, I added to my shot glass collection! After lunch we headed back to the hotel so that we could rest up a bit before we headed to the movie and then the after party. We were both so excited to get dressed up. And I was so looking forward to meeting Eva!

FINALLY it was time to get ready and head out. The theater was only a few blocks from the hotel so we walked. Unfortunately I was having issues with my shoes. The strap wanted to come off of me heal. But eventually we made it. We were a little early and they weren't seating for out showing yet so we waited in line. Then they started seating and I was SO excited.

I don't want to reveal too much about the film but I will say that I thought it was wonderful! I laughed, and I cried quite a bit. The directors didn't hide anything. They showed the moments when Eva was hurting, sick, frustrated, and angry. They didn't portray transplant as cure, because its not. The film was raw and honest and that's what I loved about it. Eva is such a beautiful person and so full of life. Her and her family are letting strangers into their lives with this film and I thank them for that. Anything that raises awareness for CF and organ transplantation is a good thing. Eva is an amazing woman and an inspiration and I personally would like to thank her and her family for their willingness to do this project.

A BC transplant organization was there to register people to become donors. As T and I were leaving the theater we saw so many people filling out the donor cards. It really touched us. This film inspired all these people to literally give themselves to others should they die. One day they may save someone's life and that is such an amazing thing. Please support organ donation, tell your family that you want to donate your organs. Something good really can come from a tragedy.

After the movie was a party at a bar across the street. I was honored to be able to speak with Eva and her family. I was able to thank the directors for making the film. I met some of Eva's friends who are just as in awe of her as I am. She really is full of life. She was suprised at how many people came to see the film and then wanted to talk to her. I have to say that I had a fabulous time.
We were getting tired around midnight and decided to take a cab back to the hotel. We relaxed a bit, got on our computers, but before too long we were asleep. This morning we packed up all of our stuff and headed home. Thanks to T for inviting me, I had a great time!

Friday, October 9, 2009

We're storming Canada!!

My friend T is on her way from Oregon to pick me up, then a few hours later we'll be in Canada! Its a full on cyster invation. She invited me to come with her to see 65_RedRoses, a documentary about her friend E with CF and her journey through the transplant process. I'm looking forward to meeting E too. I've never met a transplanted cyster in person before! I also can't wait to check out Vancouver more. I've been there a couple of times but just for a few hours at a time. I've never gotten to really check out the city. I'll have updates about the trip in a couple of days or so.

Remember, support CF research, and become an organ donor!

Monday, October 5, 2009

Busy busy!

Wow so I've been busy lately!! I had my birthday last week, happy 28th to me! I've been working of course. This past weekend I had my birthday dinner. My best friend and I are a week apart so we decided on dinner at Ipanema on the weekend between our birthdays. Ipanema is a Brazillian style grill where your side dishes are all buffet style and guys come around to your table with huge skewers of roasted meats. Everything from steak to wild boar! Its yummy!!

D should be home in about a month! I can hardly believe 5 months have gone by. This time was easier than last time. Its not that I miss him less, its just that I knew what to expect. And I knew that I could handle it.