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Your inner cheerleader

Your inner cheerleader

Self-congratulations and acknowledging one's own accomplishments I believe should be part of your daily routine. Now I'm not talking about patting yourself on the back if you make seven green lights in a row, although thumbs up to you on the luck and timing. My stance is that if you're not your own cheerleader no one's going to do it for you. For example, when I packed up the car in Colorado by myself and drove Rima and I to Minneapolis and unpacked the car within six trips and still was able to unpack us almost fully in our apartment that same night, I gave myself a few pats on the back. That was no easy task but I accomplished it and in record time, if I do say so myself. Knowing one's capabilities is very important but being able to push past what you think you can achieve and coming out on the other side better and strong is very important, self- growth. 

I've been telling Rima for months now that she's too hard on herself or does not give herself credit when credit is due. When she was in the hospital and went for walks around the building she would always try to hit close to a mile or a mile and a half. Some days she would be unable to walk that much and would get down on herself. That's when I would jump in and congratulate her and share some much-needed perspective. "First of all, you're in the hospital and you're sick, the fact that you're trying to walk on your own and not with your physical therapist is amazing. Second, I bet there are many people who're on this floor who could walk as much or more than you but refuse to. Third, I know healthy people who avoid getting in steps just because it's boring or they're lazy. Fourth, your determination, resilience and perseverance is inspirational, don't ever forget that!" I'm pretty sure I said something similar to this speech to Rima many times. 

Even to this day, every time we leave the gym I tell her good job and give her a high five. Or when she musters up the energy to do something or go somewhere even though she feels gross and would rather be in bed. I don't know if it's just that she's not the type of person to congratulate herself on small accomplishments and victories or if it's a CF thing. If it's a CF thing, from an outsider's perspective, or a normies one, the whole CF community has so much to be proud of. I hope there are CFers out there who on a daily basis give themselves pats on the back or say to themselves, "yes, that was great, you're awesome"; because I see what a CFer has to go through to live and do things us normies just roll out of bed and do. I give that beautiful community a big, BIG round of applause! I hope other CFers have people in their lives who cheer them on and give them high fives when they're needed. 

Over the last year I've seen Rima go through so much, all while being hooked up to oxygen 24/7. Add to that IV's for the last eight months or so. She has tubes on her person at all times. The amount of tangles and things her oxygen cord gets caught on is frustrating. I would have had so many tantrums and fights with the cord if I were in her shoes. She knows it and I know it. I can count on one hand the times she's been agitated enough by the tubes and the wires to raise her voice or let out a few choice words. I'd have rage issues if I were her, not kidding. Things would be thrown, wires would be pulled out, I'm a horrible patient. Rima on the other hand just has these small incidents slide off her back, like butter, like nothings wrong. I stare at her at these moments knowing how I would react, like a horrible two-year old and watch my little sister shrug it off. This is when she should pat herself on the back, but I know she doesn't.

Leaving the house every day for Rima involves carrying a cumbersome backpack. It holds her portable liquid oxygen, some meds, pills, water and other necessities she needs while out and about. She goes to the gym, restaurants, parks, and other public places with this visible sore on her back. She gets stares, trust me I know, I see people do double takes or rudely lay their gaze on her for longer than polite society allows. It's even more prevalent when the wheelchair joins us out in public. Every time I see someone stare at her I make direct eye contact with them and either stare back and shake my head or mouth a few choice words. I'm a bulldog and very protective, I'm not sorry about that and never will be. But, Rima just ignores these ignorant humans and goes on with whatever she is doing. She lets it go, enter in round of applause for Rima here. I on the other hand have to hold myself back from creating a scene. In my head they need to learn a lesson so they don't act like that again around the next person who needs a little extra help from modern medicine and machinery. 

The other day while she was doing some arts and crafts she dissed her jellyfish she was working on. I though it looked amazing but in her eyes it was subpar to her other jellyfish. I told her that she's too hard on herself, she always has been and I don't get it. I then went into one of my classic Laima rants where I just keep talk and talking and rambling. The point of this particular Laima rant was that she needs to acknowledge that she's amazing and should congratulate herself often. She either holds herself to some pretty high standards or just does not believe in self-congratulations. I hold myself to incredibly high standards, but still have room for allowing an inner cheer once in a while. I'm not always going to be around to give her high fives or tell her she's acting like a crazy person when she accomplishes something amazing but tries to water it down. If you can't be your cheerleader how do you expect someone else to?

Anyone who is or has gone through a transplant deserves a second birthday or at least a personal holiday. The amount of shit these people have to traipse through to get a second chance at life is bonkers. Rima has been dealing with this bullshit all her life and even more over the last year. Not once and I mean not once has she freaked out or had a meltdown, at least that I've witnessed. She's in great spirits even after two dry runs and still waiting for new lungs months longer than expected. I know it could be worse and others have a harder time or are sicker. What I'm getting at is that these fighters, my sister included, are inspirational. Going through what they do, on a daily basis and considering it "normal", which to them it is and don't see it as a big deal; I don't have a high five or cheer loud enough to express how amazing these people are, even a bullhorn would fall short. 

It's been a week and a half since Rima had her dry run on April Fools'. Since then life for us has resumed to its normal state. Normal is a subjective term, for us it's back to IV's, pills, vest and neb therapies, counting calories, etc. I got a little surprise treat for us last Monday. Rima and I are not the biggest fans of sweets, I'd rather have salty snacks and Rima is probably in the same boat. I found the perfect bite sized sweet treats for us to indulge in, mini doughnuts. Usually Rima can barely finish one doughnut so having the option of trying bites of twelve different flavored ones was just what the doctor ordered. 

 They were almost the size of two quarters put together 

They were almost the size of two quarters put together 

 You can just see her enthusiasm...

You can just see her enthusiasm...

 the aftermath 

the aftermath 

Last Friday Rima had her normal clinic appointment. Nothing new to report it was pretty standard. PFTs to start with which ended up being 2% lower than last time and then we met with her main Doctor. He was sad that the call had turned into a dry run for her. He was impressed how well she was doing with home IV's and keeping her weight up. I'm not going to lie I'll take some credit here, but just a little. He did mention that transplant season was about to start. Yeah, we also looked at him with our heads tilted in curiosity at that term. Apparently, when the weather gets nice out transplants start to rise. Which makes sense if you think of it, nice weather equals more people out which equals more accidents. Again a very strange thing to mull over but when is life ever not strange. 

After clinic Rima and I checked out WAM or the Weisman Museum of Art. It's right by the hospital so it was very convenient for us. The outside of the building is pretty neat, shinny and abstract. Inside the museum it's small but funky. There was an interesting collection of art throughout the rooms. Art is subjective, so on that note Rima and I could have art in that museum. Some collections looked as if kids got their hands on them. Whatever floats your boat I guess, or in this case museum. 

 WAM

WAM

 Yeah, my watercolor is miles better...no lie. 

Yeah, my watercolor is miles better...no lie. 

Saturday the weather forecast stated it would be beautiful, 75 and sunny. We decided to go for a picnic or picnic 2.0 to have a redo after the previous weeks' was interrupted. We tried to go to Lake Como first but it was literally swarming with bodies and zero parking anywhere...next! We then drove down to Lake Harriet to see if we would have better luck. We found parking but then the weather took a turn, the sun decided to disappear behind dark clouds and the wind picked up quite a bit. We then tried for park number three close by, but it turned out to be a dud as well. Finally, we ended up at Powderhorn Park. It was basically vacant compared to the first two parks, which was so nice. We picked a spot overlooking the pond and got down to picnic business. It was a bit windy and cooler than expected but we were on a mission. A mission to eat and play games on a tapestry outside without a dry run ruining it. 

Oh, some of you might be wondering how my threat to the universe is going. The one that I refuse to recycle till Rima gets her new lungs. Yeah that one, well, ahhhh...I think I need to pick a new threat. Unfortunately like Rima said "it's in our blood to recycle." We grew up with a super environmentally friendly father, so it goes against our very genes to just toss and not recycle or reuse. For the first few days I held my ground, but honestly it was really hard. I even put things to the side of the trash and hinted that Rima should put them in the recycle bag for me. I was indirectly recycling, but I spend way more time in the kitchen than Rima does so the pile eventually got larger and larger; naturally it found its way to the proper bag, by way of me. So, if anyone has any thoughts on a better threat I can follow through with I'm all ears, because I'm over killing pieces of my soul and the planet, poor sea turtles. 

 Views

Views

 almost 2 hours later we are in business 

almost 2 hours later we are in business 

 Bananagrams!

Bananagrams!

 mini connect four 

mini connect four 

 

 

 

You've got a friend in me

You've got a friend in me

F U April Fools'

F U April Fools'