2 weeks ago she died....

1 week ago I was at her service, so many miles from home...

And today, I had my worst lung function tests, I think ever. FEV1 of 32% I think. Ugh. My CF team is not worried yet, as I look good, and I feel good, and I am having a definite flare in my sinuses that may be compromising my lungs. Also given the tests were the first thing in the morning, when I always have trouble. So since I still feel good, we are trying 2 weeks of Cipro and a month of Septra, both oral antibiotics. Hopefully in a week I won't be coughing as much. I am also being referred to have a sleep study as I think I may be dropping my oxygen saturation at night. I am always sore and achy, I have some headaches, some blue fingertips, and it just makes me wonder.

I know, not a good update. But really, the facts sound harsher than the reality. I still don't feel bad. I was able to play with my "nephews" in Portland, the lovely sons of my long time BFF (one of two) Jenn, lug my luggage up the flight of stairs and back down, drive myself to clinic, and not feel terrible doing it. I am sore now, but that is becoming more the norm that I just deal with until we can find the root of it. I am so thankful that my life is in a good place right now. That I have so much love and support around me, and that I feel good to enjoy what I have.

How you can help

I've had a lot of people ask me how they can help after the passing of Jenn, either with donations of monetary or fiber. I do have a project that I am dreaming up, but I first am going to get permission from her family that they are willing to let her memory be used to support other CFers.

There are two ways to do a monetary donation. I am aware of a large donation already going to the Cystic Fibrosis Foundation in Jenn's name. If you choose this option, her full name was Jennifer Walsh, and the family should be made aware of this donation, even without her address (which I do not feel comfortable posting). Her local chapter was the Massachusetts/Rhode Island Chapter.

You can also donate through my walk for CF, this May in Eugene, Oregon. I'm walking in honor of Jenn this year, and you can find my page over here.

Again, I am in the process of creating a way for knitters to help, a charity knit or crochet that will be a way to reach out to CFers, something that Jenn strived for.

Jenn's Service

I am home, and it was a good trip. I think that I needed it in a lot of ways. Below are some pictures, I'll write more when I get a chance, but Matt and I are headed out the door here in a moment.

Sunrise from cruising altitude.



Knitting my flight away.



My beautiful friend.




Memory Table.







Amy and I, representing Jenn's online friends. It was amazing to meet her, and we had a great time, despite the circumstances.



Her family and friends are absolutly amazing as well. :)

Boston Here I Come

Early mornings are not my friend... and I forgot to pack a mask for tomorrow for when I encounter CFers...

But I'm on my way.

Still Blank

I feel like I need to write something, but I have no idea what that should be. Just watching the cursor blink, trying to figure out what I should say... how i can express how I feel.

Right now, I can't imagine what her family feels like. With CF, you always know that early death is almost inevitable... but it's not supposed to come so swiftly.

I spent yesterday, finding all the places that I knew her. Looking at pictures. Tyring to figure out if she left with any regrets. Trying to figure out if I left anything unsaid. I don't think I did. But that doesn't really comfort me right now.

I am taking care of myself... I'm actually doing better about doing that right now. I keep trying to think what I can do to make myself feel that I am honoring her. That I'm doing what she would want for me. Right now, that's taking care of the physical the best I can, while the emotional works its way through.

She's Gone...

The miracle didn't come...

She died yesterday morning...

I don't even want to think about it...

Because I'm scared the tears won't stop...

I should be comforted the pain is gone...

And that she is in a better place...

But that all seems like ways to ignore...

How crappy this really is...

A Boston bound plane, may find me soon...

To go to the service of a girl I never met in person...

But loved so much, and miss so much...

It's really not fair.

The 100th

I noticed this is my 100th post on here. I wish I could celebrate, but I don't have it in me. Jenn is still on this side of forever, but it's hard to know for how long, or if the miracle will come. I tried to exist normally today, and for anyone not looking too hard, I did. But I hurt. I hurt really bad. And I don't want to talk about it, or acknowledge it, or anything, because that will make it real. And the more real it is, the more I feel that I have already given up on her, and I can't do that. I have to hope against hope, because she would do the same. I don't know what will happen. But right now, the middle ground? It sucks.

Praying

The hazard of being connected to the CF world, is the inevitable, that we are all living with a fatal illness that shows no mercy. Usually you can slowly see it coming... the progression of CF is usually slow, steady, and you can prepare.

But I'm not prepared at all. Right now, one of my closest friends with CF is clinging to life in Rhode Island. Jenn had been in the hospital for the past month, working through a number of health issues, and was improving. Then a few days ago, she had a very bad lung bleed. Currently she is in ICU, vented, and it doesn't look good. I am praying with every fiber of my soul, but I am in so much shock as it came from nowhere... and it's MY JENN. Someone that I bonded with so much, though we've never met in person. The cruelty of no warning, nothing, no preparation... it hurts so badly. She is in the process of getting listed for lungs, but now that chance, a chance for new life, may be gone. It just hurts too much.