Saturday, October 8, 2011

My "Declaration of Compliance"

Guest post by Devon D

With Cystic Fibrosis comes an endless list of responsibilities and things to do. One of the most crucial things on this list is treatments. Doing my treatments has always been a struggle.

For me, it was fun and friends first, then health.

At a much younger age, my parents literally forced me to do them. They sat on the couch next to me and had to watch me to make sure I was doing them right. But even then, I sped up the timer, and poured out my medicines. As time moved on, and I got older, things got worse. I began getting into arguments with my parents. I literally refused to do my treatments and eventually my parents 'gave up'. I did what I want, and I was okay with that. In a week, I should be doing 14 treatments. Out of those 14, I ended up doing 5 at most.

I went to my CF clinic for a normal appointment, I wasn't too concerned. My PFTs were down from my baseline, which is around 100% for my FEV1, my FEV1 was approximately 90%. For me that's a huge difference. I, thankfully, wasn't put in the hospital. But still, it was scary! I was honest with my doctor, I told him I wasn't doing good with my treatments. The social worker that has been part of my CF care team said to him, “She always goes through these phases and she always pulls herself back through.”

With that in mind, I went home immediately decided to do my treatments the right way. Unfortunately for me, that lasted for about a week. I quickly slipped back into my old 5 treatments a week routine, sometimes less. I had no motivation to do my treatments. I didn't care. I didn't want to be bothered with my treatments. All I wanted to do was go on the computer, go out with friends, do fun things. Anyone who has ever done treatments would know they don't exactly fit into the 'fun' category. I went on with my normal routine, happy as could be, doing what I wanted. Before I knew it, my next clinic appointment was just around the corner. I went in a little nervous. I knew I wasn't doing what I was supposed to be doing. I felt as if I let my whole care team down. I did my PFTs to the very best of my ability hoping for some miraculous pull through. I lucked out, my PFTs were not only good, they were better then they had been the last time. They were around 98%. I don't know why they were so good. I didn't deserve for them to be that good. I knew I didn't. I felt like it wasn't fair to the people who really try hard and always do what they are supposed and still don't have good results. I felt as if I had cheated my way through my PFTs. I should have been in the hospital right then and there. But my PFTs didn't show it, and my lungs didn't feel it. I felt good, physically. Luck is the only explanation I could offer myself. My doctor was so pleased, if only he knew how horribly I had been doing. On the outside I was smiling, proud of how well I was. But on the inside, well, that's a different story. I was breaking down. The whole way home, I silently cried while listening to my ipod. But it was then that I decided that I couldn't do that anymore. Surely, the next time I wouldn't be so lucky. I would be in the hospital without a doubt if I didn't pull myself together.

That very next day, I began with confidence. I woke up early and immediately got on my my vest. It was summer, so I knew if I got up later I wouldn't even bother to do it. For the first time in a long time I did my whole treatment the rightway. And you know what? I felt great. Of course it was only my first treatment, so I didn't feel a whole lot physically. But mentally, I felt so proud of myself. Everyday, that was my routine: get up early do my morning treatment, do whatever it is had to be done throughout the day, do my night treatment and go to bed. A little bit into my 'declaration of compliance', I missed two treatments. I was a little disappointed in myself, but I was far from discouraged. That next day I got right back into my routine. And do you know what? I haven't missed since. As of September 19, I have completed 30 days of treatments with out skip. That's 60 treatments. Now, not only am I feeling the physical results. Mentally, I feel on top of the world. I made it. I got off course for a long time, but I gained control of myself and now I'm back on track. I'm ahead of CF in this racetrack I call life.

Now that I've been 100% compliant for 30 full days, I feel absolutely and completely wonderful. I'm sick with a cold right now, but regardless I feel amazing. My lungs are feeling stronger than they have in years. I can breathe so easily. I can run. Running has always been my weakness in athletics. But I'm able to do it without stopping every minute. Now, I can run for 5 minutes without stopping. And because I can breathe more easily, I exercise more. And you know what? That has helped my appetite. My appetite has improved so much. That means my weight is stable, and my feeds go from 3 nights to 2 nights a week. My appetite, and better eating habits has affected my energy level.. I want to get out and do things. I look forward to going to school, rather than sleeping all day. I don't want to sleep until 12 on the weekends; I don't even want to sleep until 11...I want to be up by 10. I don't want to sit on the computer all day. This time last year, when I wasn't compliant, I was lazy, worn out, and unmotivated to do anything. It's a chain reaction.

Oh how treatments make a huge difference. I feel better than I ever have.

I can't honestly say doing treatments the right way is easy, nor can I say it's fun. But what I will tell anyone (at least anyone with CF) is that it is worth it. It's a struggle at first, and chances are some treatments are going to be skipped at first. And that's okay. It's no reason to be discouraged. Just never give up. Giving up the first time was the worst thing I ever did. Not only did I feel like I let my whole CF care team down, I let myself down. And that bothered me. I lucked out, when my PFTs were better. They shouldn't have. They should have been worse. And getting back into the habit was the best thing I have ever done.

If I can feel this amazing in 30 days of treatments the right way, I can only imagine how I'll feel a year from now, with this same routine. But not only is this going to help me a year from now, it's going to have a huge impact on my health years down the road.

If I can do this, believe me, anyone can. But do it for the right reasons. Don't do treatments for the sake of getting them done, because doing half a treatment isn't really doing it. Do treatments because you want to stay healthy. Do it because you want a bright future.

And although I've already said this, it is worth it. I promise. What's worse: spending an hour a day (or however long it takes for you to do treatments..I only do two half hour treatments a day) on treatments or spending a few weeks in the hospital/on IV antibiotics? Think about it.

Author's bio: I'm Devon. I'm fourteen, fifteen on November 6th. And I'm a freshman in high school. I live in New Jersey. I was diagnosed with Cystic Fibrosis at age 1, and with CF- Related Diabetes at age 12. I'm a straight A student with all honors classes, an athlete, and part of Animal Lover's Club, French Club, and SADD (Students Against Destructive Decisions) in school. And I volunteer and help people in every way I can.

Note from Ronnie: I can't thank Devon enough for contributing this blog. It's always great to hear stories of cysters (or fibros)that finally 'get it'. They get that they would rather make a "painful" short-term investment each and every day for the possibility of a long-term reward. My wish is of course that everyone would see the light as quickly as Devon has, but the great news is, it's never too late! It's never to late to give it all you have to be the best version of yourself!! Let's all get started today! Thanks again Devon :)

Friday, October 7, 2011

Sweet Belly Shot

35 weeks

Thursday, October 6, 2011

Thankful Thursday: Baby Showers & Preggo Classes

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 hospital pregnancy classes. Our hospital has classes that they offer for pregnant moms. This week we went to two different classes. Monday was a class all about caring for your new baby and last night we took a breastfeeding class. I am sooo thankful for these types of classes as they help a clueless first-time mom feel a little less clueless.

I'm thankful for my big brother. My big brother turns 27 on Saturday and when his birthday comes each year I always feel so thankful to have such a great big brother and am so thankful that he's another year older. There is not another man like my brother, and I feel so blessed that I got to grow up with him for the last (almost) 25 years. He's a fun, smart, unique, loving guy and I am so blessed to have him in my life. He has always taken such great care of me (even when I didn't think I wanted/needed him to) and for that I am thankful.

I'm thankful for being 36 weeks pregnant. As of Tuesday, we were 36 weeks pregnant. 36 weeks is a bit of a magical number, it's not quite full term (1 week shy) but it's a time when if Peanut came, everything would most likely be a-ok. I am soooo thankful to have made it to 36 weeks, and that it's been a healthy, easy pregnancy! I am so thankful for Peanut and just can't wait to finally see her face at this point.

Ronnie's List:

I'm so thankful for loving and supportive grandparents-to-be! We are both blessed to have parents that are SUPER excited for the arrival of Peanut. This will be the first grandchild for both sets, and I can tell by every word out of their mouth and every action they take, that they are uber pumped to welcome her into this world. I've always felt that I had the best family in the world, it's just really nice to be married to a woman who can say the same about her's :)
I'm thankful to be back into the groove. As many of you know, after a stint in the Hole, it can be difficult to "find your rhythm" again. I mean, it eventually comes back, but sometimes it takes longer than others. Thankfully, the adjustment period didn't last very long this time and I'm already fully engaged in my gym, sleep and treatment schedule.

I'm thankful for "Auntie Showers". Anytime a woman in the family is getting married or having a baby, all of the aunts in the family get together and throw a shower. This weekend, we will have the pleasure of having an "Auntie Baby Shower" and are very excited to have the clan over to the house for a day full of hanging out and gift giving. Well, I guess we'll be gift taking, but I know that's exactly what they want us to be doing :)

So, what are you thankful for today?

Wednesday, October 5, 2011

How Did Your Parents Positively Impact Your CF Life?

Here are some good questions and answers about the impact of parenting on this CF life and how my parents made CF treatment time fun!

Question: How did your parents positively influence your life and living with CF? How did they negatively influence your life as a CF’er?

The biggest thing that my parents did to positively influence my life and living with CF was to they themselves have the attitude that we were going to kick CF butt each and every day. Treatments were never negotiable growing up but after I “did what I had to do” I was free to do anything and everything that I wanted. I never ever saw my mom discouraged, scared, or angry because I had CF. I later found out that she spent many nights crying herself to sleep, but I never saw that. I think it was very important for me to see her confident about facing this CF life. The only negative thing I can think of was my mom's initial reaction to the CF diagnosis. As most moms do she went into hyper protect mode. She threw me into a bubble and had no intention of letting me out. This lasted for about 4 years or so until a Dr. finally said, “Chris, Ronnie is going to be somewhat physically disabled his entire life, but if you continue doing what you're doing he'll be mentally disabled as well.” That changed my mom's entire perspective on CF.

Question: What unique memories do you have of your parents and how they took care of you living with CF? {For example: my parents use to sing to me certain songs during percussion time, which I sing to my daughter now. My parents would purchase new PJ’s for each hospital stay. My mom would stop at a place for breakfast before a CF doctor’s appointment.}

I have fond memories of treatment time because I always got hand-pounded by either my mom or stepdad. I just remember it being such a time of bonding between us and frankly gave us time to catch up on each other's day. When I was a child my mom would put on a song and "beat" to the beat of the song. We would also play a game in which I would try to get away and she would grab my legs and pull me back I often laughed so hard it put me into a coughing attack. Treatment accomplished!
This is for all parents, fibros and cysters to chime in on! What about you guys, how would you answer the question?

Parents, how do you feel that you both positively and negatively impact your child's CF life? How do you make treatments fun?

Tuesday, October 4, 2011

Baby Your Baby

We had a class last night called "Baby Your Baby" and it was all about what to expect for the first couple of months after bringing the baby home. The class was taught by a woman with many years of OB experience who now does community education full-time. There were 4 other couple in attendance for the 3 hour class and one of the couples was actually in our birthing class as well. The teacher had all of the standard props there including a fake baby, diapers, swaddling blanket, etc. It was a good opportunity to freshen up on some stuff that we may have forgotten after a long lay-off of taking care of youngsters - me with my little brothers and Mandi as a babysitter.

Like Mandi has said from the beginning, "Whenever it was someone else's baby, I never worried too much about doing things 'just right' cause I knew at the end of the day, the mom would clean up my mistakes. Well, now we'll only have each other to clean up the mistakes, so it's a lot different". I actually shared that sentiment with the entire class and they all seemed to have a good laugh at it and I saw a few nodding heads.

I can't even recall what was covered first in the class, but I do have a few points that were made that are sticking with me:
- Don't allow your infant to sleep with stuffed animals, bumpers or blankets in the crib
- Don't under any circumstance leave them alone around any amount of water
- When babies have outstretched arms and are moving around quite a bit, that usually means they're done playing and are overstimulated
- Don't let your newborn sleep for over 4 hours at a time
- When they are infants, there is no such thing as spoiling them with attention

So those were the things that kind of stood out to me during the course of the class. I'm sure there would be others if I really racked my brain a bit, but at this late hour, that's all that I've got. My question is this however, are there any things that you may have never known or just kind of missed prior to taking your baby home that you wish you would have known sooner or just paid better attention to? Anything that caught you completely off guard? Any and all tips, insights, etc are always welcome around here!

Sunday, October 2, 2011

4 Weeks and Counting

AHHH that's right, only 4 weeks until D day!! As of Saturday, my due date was exactly 1 month away. I could not be more excited to be getting so close to meet this little love. I will miss having her inside me, with me all the time, feeling her every move, but I will LOVE being able to look at her sweet little face and hear her little cry!!

I have decided that the thing I will miss most about being pregnant, is feeling Peanut's every move. Somehow I feel like I am sharing special little moments with her that no one else knows about - like we have a little secret every time she nudges me, kicks my bladder, wiggles around to get comfy. But I will say, as Peanut gets bigger in my compact 5'2" torso, she is starting to impede upon my ribs a bit. For some reason, she LOOOOVES to snuggle both feet or her booty right up under my ribs on the right side. It's funny, never my left, always my right. The other day she was snuggling her booty up into my ribs like usual and I looked at Ronnie and said, "She must have my booty...I think she's 50% booty!" So in honor of Peanut, and her booty wiggle into my ribs, here's a little music video we made a couple years ago. Bring on that booty, Peanut, momma's ready to be snuggled for another 4 weeks, as long as you don't break my ribs :)