Thursday, July 11, 2013

Thankful Thursday: Swim Lessons & White Vinegar

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:
I'm thankful for swim lessons. Mckenna took a two week swim lesson ending last week. It was so cute to watch her in the pool, see how excited she was every time she got to do something with the teacher, and watch her grow as a "swimmer". Mckenna seems to really enjoy swimming and pick things up quickly, so it made for a fun experience for all of us!

I'm thankful for lots of class times at the gym. I was in Tucson for work all day yesterday, so I wasn't able to go to our normal class time. Thankfully, they had a few of our classes in the evening, so I could make up the workout. I'm thankful that our gym allows me that flexibility.

I'm thankful for avocado. I've been adding avocado to my salads lately and man oh man, it's good!

Ronnie's List:
I'm thankful for a full day with Mckenna. Mandi had to travel for work and was gone the entire day yesterday. It was nice to be able to hang with my little girl all day and not worry about work myself (except during her nap time). It also makes it easier for Mckenna and I because there is no "mommy option" and she figures out quickly that she'll just have to put up with me and can't escape to Mandi :)

I'm thankful for white vinegar. I always forget about the magical stuff that white vinegar can be used for. Yesterday I used it to clean and decalcify all of our faucets and they look like new! I need to use that white magic more often.

I'm thankful for extra treats. I'm currently taking a medicine that requires a high-fat snack about 30 minutes before the dose. I usually eat peanut butter, chocolate peanut butter, or some other tasty treat which doesn't count towards my calories for the day. [I'm not trying to lose weight, but I am trying to reshape my body a bit which requires me to alter my calorie intake.] 

So, what are you thankful for today?

Tuesday, July 9, 2013

Stuck in a rut

I recently received an email by someone that I consider to be a friend in the CF community. We've worked together on a project that had us talking every week for about 3 months and I was fortunate enough to get to know her and her husband. I feel invested in her and was honored that she would reach out to me in this situation. Her writing is in blue with my response in italicized black. It's split up like a conversation so it's easier to follow:

I read your blog post today and I feel like it really spoke to me. Last month my doctors gave me a "new baseline" lung function of 59-60 FEV1 which was down from 80. I stayed pretty positive. After all, I felt fine and was able to run a bit. I sat down and made a plan for myself to keep working out to be able to run 3 miles.  Then life happened. I got called into the hospital to work 3 out of the last 4 of my weekends (she tried the 4th but it was my wedding anniversary).  The girl I job share with has 2 kids who have been getting sick and passing whatever it is around her household.  Although most weeks I still got 2 days off at some point, there were stretches where I worked 8 out of 9 days. I was/am exhausted and now, puny. I'm coughing all night. I get winded doing laundry...much less running.  

First things first, this IS NOT your new baseline. You will simply not allow it to be. You will make the adjustments necessary because the two most important people in your life is your husband and you (You're the most important by default since you are your husband's most precious least that's what I tell myself regarding Mandi ;) ) Was the crazy work schedule happening before the "new baseline" or after? 

Life happens to all of us. There are seasons of no problems and seasons of nothing but problems. The trick is to maintain our level of commitment to our health, even at the expense of some things we love in life. When I get sick and life is crazy, I basically have "no life". I handle my "have-to-dos" (in your case work) and outside of that, it's all about my health. If I'm not working, I'm at the gym or doing a treatment. It's no fun, no fun at all. Frankly, it sucks. But, when I'm in the season I always think back on two things: How I felt/feel when my health wasn't my priority, and the about the promise I made to Mandi. I promised her she would never be alone. Ultimately, there is only One person who can keep all promises, but I'll make sure that I do everything on my end to make sure I stay true to my word.

I am so sorry that you are feeling the way that you do. I wish I could take it from you. I wish there was something I could do.

I guess I just don't know what to do. I got the "be proactive" lecture from my doctors and I've sent them an email asking what I should do.  I'm just frustrated because I feel like I can't win. Since my coworker has sick kids, I feel like saying "Sorry [name withheld] I can't trade you a day because I may get sick if I don't sit on my couch. You're going to have to tough it out." is so lame.  I'm not missing treatments, and I was exercising.  What more can I do?

Let me say what your excuse is actually, maybe not what she'll hear, but what's actually going on, "Sorry [name withheld], I can't trade you a day because I'm sick. I'm sick because my health is decliningMy health is declining because I've been putting more into this job than into my health. I need to put myself first for at least a while and get back on track. You're going to have to make other arrangements.". That is NOT so lame. That's being selfless for your husband. I understand that she may have to find another job or spend (lose) money on different childcare, but frankly, it's either you or her. You'll be the one losing money (and other precious commodities) if your health continues to decline.

There are times in our lives when what we did before will not fit, or fix, the present situation. I lived for years doing the same amount of treatments and exercise all the while watching my lung function decline. I wasn't willing to adjust. I loved my job. I was good at it. I felt valued. I didn't want to give that up. The ICU and the threat of intubation quickly changed my frame of mind. Seeing a lung function in the 20's slapped me in the face. I new if I didn't change, I was going to die.

You're not there, but I don't want you coming even close to that.

My doctor suggested that I may want to try a less physical job...maybe at an outpatient clinic where the patients aren't as sick and don't typically have to be lifted or anything.  But there are no jobs around for that...especially not full time. We can't afford me not to be full time right now. 

I don't think the physicalness of the job is the bad thing (in fact, it could be good). But being exposed to sickness can drastically alter your course. I've never been as sick with non-CF sickness as I was for the past year. I have a little girl who loves to give kisses, and I don't turn them down. I catch what she has almost every time. It's been hard. I'm trying to make adjustments, like washing my hands more and less kisses, but it's real hard. However, I know she'd rather have a living daddy who doesn't kiss her as much than a dead one not kissing her at all.

As far as the job situation, all you can do is to keep your eye out. Also, I'd rather see YOU make the decision to switch jobs, go part time, change careers, etc. than you being forced to change because of a decline in health. 

I realize now that I'm reading this over again, I'm kind of dumping a lot out there. Sorry.  I just wanted to see if you had any ideas. 

Listen, I'm always here for you. Always. You're one of my faves and I actually hurt a little bit reading all of this. I wish I had the answer. All I can do is share with you what I've learned over the years with my (good and bad) choices and you have to take it from there. 

Please never, ever hesitate to reach out.

I'm glad to hear you're doing so well! Your baby girl is adorable by the way. I like seeing all her cute fb pictures. :)

Thank you. Mckenna is just very fortunate that she has a smoking hot mom who passed down half of the genes ;)

**Update: She has been focusing on nothing but work and treatments/exercise for the past couple of weeks and is starting to feel much better. Sometimes a "boring life" is just what we need for a while!!**

Monday, July 8, 2013

Weekend Recap

The holiday weekend is over and it's time to get back into the grind. I don't know about you, but I am SO thrown off by holiday weekends.

Ronnie and I are very routine people. Almost to a fault. Our days look pretty much the same every day, plus or minus 10%, I'd say. He gets up and does a treatment while doing his daily quiet time/bible study. I get up with Mckenna and get breakfast going. We all eat breakfast together. I work for 4 hours, while he watches Mckenna. We all go to the gym. We come home for lunch and eat together. Mckenna goes down for a nap. I do work and/or chores around the house. Ronnie does work and a treatment. Mckenna gets up. I watch her til dinner while Ronnie works. We all make dinner and eat together. Then it's bath time and bed for Mckenna. Ronnie and I lounge on the couch and watch TV. Ronnie does a treatment and I go to bed or watch TV. Then we repeat it. Day in and day out.

When a holiday weekend rolls around, we get super thrown off. This holiday weekend we were lucky enough to have his mom and brother come up from Tucson from Thursday to Sunday, which was really wonderful, but also threw us off even more. All day Thursday I thought it was Saturday, by Sunday, I had no clue what day it was! But it was awesome. We filled the days with relaxation and good conversation. Saturday we had breakfast with Ronnie's aunts and cousin. And then went to my parents to go swimming. It was fun to see Mckenna showing off her "swimming" skills to her Grandma and uncles.

Mckenna loves having her "Maw maw" (grandma) here with her. Poor Grandma didn't get to sit much all weekend. Every time her tush hit the couch Mckenna would grab her hand and "command" her to stand up and do something else. "Maw Maw up!" "Maw Maw sit!" "Maw Maw go!" I think Grandma may be happy to be back at work this morning, sitting in her desk chair without a little 2.5ft pipsqueak telling her what to do! Ha! Mckenna also loves her Uncle "Dran" (Grant). Mckenna is always a little leery of males. But she has always been warmer with Grant than most others. Maybe it's his sweet efforts to win her over. A tickle of her toes here. A genuine laugh at her silliness there. He always comes up with the funnest games for her to play. She still is cautious, and doesn't get too close (like a kid at a petting zoo), but she's pretty smitten. The cutest was after our pool day. He would say, "boo" and pop up at her when we went swimming at my parents' house. So the next morning, when she saw him sleeping on the couch (we don't have enough beds for both Grant and Ronnie's mom so he gets the couch in the family room) she excitedly ran over to him and said in a whisper, "Dran, BOO!" It is so sweet to watch her relationships blossom with each of her family members. I love watching the unique relationships she develops. With each grandparent, aunt, and uncle she has different things she does with them and remembers about them. It can be weeks from the time she sees any one of them, but as soon as she sees them, she recalls something about their last encounter and attempts to recreate it. It warms my heart to know just how loved she is and how much love she will give as the years go on.

We are all trying to get back into the groove. Thankfully our gym schedule wasn't thrown off, so we won't have to be working hard to get back into the swing of things in the gym. However, work and chores around the house may be another story. Anyone know where the laundry fairy lives so I can give her a call for help? Ha! I sat down to work today, opened my email, and stared blankly at it for a minute or two. Trying to get my brain back into the zone. What is it about long weekend's that makes you feel like you lost brain cells? Ha! Anyways, I hope everyone had a fabulous weekend with friends and family.