Sunday, February 28, 2010

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!

Friday, February 26, 2010

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.

Tuesday, February 23, 2010

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!

Monday, February 15, 2010

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.

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

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.

Wednesday, February 10, 2010

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!

Thursday, February 4, 2010

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!!