Thursday, July 9, 2015

Life's Twists

This Week:

Well, this week started off really nice with the 4th of July, my mom & sister's Birthdays, etc. But a lot is going on right now! We are starting to finalize wedding stuff with the caterer & flowers, etc. Got almost 50% of RSVPS back, a few invites had to be re-sent out due to people moving, etc. But so far wedding stuff is going smoothly. My sister & a couple bridesmaids have been planning for our wedding shower this weekend.

We decided to call it a wedding shower, instead of a bridal shower, because its for Andrew too. I think it is silly for him not to be there, the wedding isn't about me, it's about us.  He's looking forward to it too and I have been super impressed with my sister's mad organizing skills. She has been simply amazing and so far we haven't had to many bumps in the road with wedding planning. It takes organization, but its pretty much like planning a CF Walk or other event.

Picutre: My sister & I

One aspect of my wedding shower that isn't ideal, is that one certain family member won't be there. I knew she was planning on coming to my shower & wedding, we had just discussed them 2 weeks ago. But, sadly she suffered a stroke just recently and last night I got the call that she had passed away. While she wasn't immediate family, like a cousin or grandma, but she felt pretty close to me.

She came to my local theatre performances and always supported me in everything. She 'd see in the paper I was involved in something, she'd show up.Whenever we were at a family function I always sat with her. We loved to joke around and gab away, we had similar personalities.As a child I loved jumping on their trampoline (they lived next door to my grandparents). As an adult, I got to know her even better. We both loved attending shows & the town's festivals, so I'd see her at almost every single one. I'd run into her almost every Tuesday morning at Myrtles last summer. She'd go out with her girlfriends for lunch every week, while I went with my mom's family or friends. She used to tease Andrew & I about being young & in love and how it just continues to get better. She was in a water aerobics class with a friend's mom & grandma, so I got to hear some stories about that too sometimes. She may have been 80, but she was so young and fun at heart. Such an amazing lady. I always told mom I wanted to be like her, going to festivals, traveling, going out with girlfriends. What an amazing woman and role model. I've been very fortunate to have so many amazing grandmothers & grandma type figures in my life. I know its been hard on the family to hear that news we got last night. I'm glad the family is there to be with my uncle at this time.

It was a pretty stressful night last night. Today, my phone stopped working this afternoon, so I'm going to have to be contacted via social media for now about everything. Having no phone drives me nuts. Every single day I have something medical I have to do. For example: this morning I got the privilege to call the pharmacy and set up delivery for my pulmozyme.  I woke up with no voice, but I had no idea until I called the pharmacy...

The guy answered and I went to say " I need to set up a delivery"  but almost nothing came out. Needless to say, that phone call took a while, but whew, my pulmozyme is set up.  In other medical news: I'm training to gain weight and also get my lung function up.

I dropped down to 97lbs at one point in the last few weeks. I'm really wanting to get back to 108 lbs. I was really healthy at that point and that's my goal by the wedding. My seamstress lady is super nice about. She is leaving some wiggle room and knows about my medical situation. Whew. Well, some good news I figured out some tricks or tips!

Yep, you heard me, I found somethings that work for me!

First of all, make sure (if you have a therapy vest) to talk to your CF team about the settings for it. I've had my vest since I was 12 years old and nobody really told me what to set it at once as I got bigger. I saw a couple pictures of other CF adults and realized their settings were much higher than mine. It may have been dumb of me, but I never had thought about needing to turn it up that much. I had been doing nebs at 8 frequency & 9 pressure. Now, with my new vest I have the options to set the numbers and they can change throughout the 30 minutes vest treatment. So now I have it start off at 11 and go up to 12 for frequency. For now that's all I can handle. I found showering after my treatments helps me too. The hot air, steam, and water, helps me to get the junk out. I have never been able to get the "junk" out before. So it just sits in my lungs, now I can get some out. I know its gross, but if it doesn't come out, it sits down there causing
infections. So hopefully, that will show some difference in my numbers eventually.

Second thing I found that helps is a certain couple supplement drinks. Usually the problem is ensure and boost is expensive over $1.50 a can and I'm supposed to drink 3-4 a day. Then there is the problem that they are 8 oz so they fill me up, leaving less room for actual meals. Combined these two things are quite a problem. However, HyVee has a hyvee brand type ensure drink for cheaper, it tastes just the same( I love the chocolate ones), but it still has a lot of ounces. At least it helps the budget a little. Then mom found these new Boost lil drinks that are only 4 ounces and have over 300 calories each. But a 4 pack of those costs the same as a 6 pack of the ensure. However, its worth a little extra cost, to only have to drink half the ounces.

I can swig a lil 4 ounce 300 calorie drink and still be hungry. So they seem to be a good fit. I won't be able to afford them all the time. But until I get my weight back up, we have to make it a priority. Which of course Andrew has no problem with, I'm the cheap one who hates spending all this money on my grocery bills, etc. haha.

BUT, I can't complain since the scale says I weigh 99.8, yay! Heading in the right direction. I hope I can keep it up. Finally some good news. I feel like I've been struggling healthwise a lot this whole last year!

So what a week. But since I hadn't blogged in a week I wanted to update everyone.

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