Thankful Thoughts

It's November 8, and I have been less than committed to my "November Blessings" this year. Since I haven't posted in a week or so, I figured it was time to update what I'm thankful for today.

Today, I am thankful for the right to vote, which I exercised on Tuesday. I realize how lucky we are to live in a country where we can vote (regardless of gender, race, or religion), our voice is heard, and we are given the opportunity to vote in new candidates over time. I believe I am so blessed to live in this country.

I am also thankful for access to great healthcare. I have had a variety of doctor appointments in the last two months or so, and I am so blessed that I have the financial ability to be at one of the best hospitals! My CF care team is phenomenal, and all of my other doctors are great too. I can't even begin to describe how different my life would be if it wasn't for this standard of health care.

And finally today, I am thankful for my insulin pump. I recently decided to go on the pump so that I don't have to inject myself 5+ times in a day, and so that I would have better control over my sugars. This transition really deserves its own post, and I will try to do that somewhat soon. I've been on it for over a month now, and I love it. My sugars are in GREAT control (80s in the morning, under 120 two hours after eating..wonderful numbers), and I only have to inject myself once every three days to change my site. It has made my life a lot easier, and for the first time (in a long time) I forget once in a while that I have diabetes. And that, my friends, is definitely something to be thankful for.

I have another CF appointment today. Last time, my lung function had dropped from 85 to 78. I never see numbers that low, and it terrified me. Hopefully this time they are back up. My respiratory therapist, who is amazing, will be there this time. She wasn't at the clinic last appointment, and my doctors said that they will wait to see what my numbers are when she is back. SO, I'm hoping my FEV1 will be at least 83! 

Halloween Fun, and November Blessings

Last night was a blast! Halloween is, by far, my husbands favorite holiday. He loves to decorate, he loves to see the costumes, and he loves to watch me hand out candy so he doesn't have to do it. This year was spent with our normal family traditions: eating big macs (a tradition passed down from David's father), watching scary movies, and enjoying our decorations.

Yes, our decorations are fun, and for many kids they are scary. We always have kids who have to bring mom/dad to the door because they are too scared to go alone, and we have other kids who hesitantly walk up on their own (parents laughing in the background), and they sit there and stare. This year we actually had a child try to come in our door to touch the decorations, and we had another girl who was so impressed with "Feddie Koogles" that she kept asking everyone to come see him.

A little different than last year, and you can see our orange and purple lights in the background on the walls. Also you can see the awesome cobwebs that David put all over the lower wall. 

Oddly, we had a lot of kids pass our house up this year as well. We've never had that happen before, but apparently other adults had the same issue. I'm not sure if kids just are unsure of how to trick-or-treat anymore or what. Although our trick-or-treat hours started at 3:30 so many people weren't even home.

Overall, we had a great time and we were out of candy by the end of the night! I always enjoy our Halloween celebrations, and I'm not sure what will happen once we have a kid. I'm sure they will change quite a lot.

On to November!

Since it's November 1, it is time to start my "what I'm thankful for. . . " each day I post this month. I have so much to be grateful for that it is quite hard to pick out just one thing to celebrate with each post so sometimes I will have more than one. Today is one of those days.

Today (and everyday) I am thankful for God. I have received many blessings recently, and I know that He is responsible for them all. I am overwhelmed by His love and power, and I don't know what I'd do without Him being such a big part of our lives. We are so blessed each and every day.

Today (and everyday) I am also thankful for my husband. David has been working very hard recently, and he has been helping me pick up some slack at home when I'm not feeling well. He has basically been running the house and managing a full-time job on top of it. I am so impressed by his dedication and love to me, and I wish I could do more for him.

As November continues, I encourage everyone to take a minute and think about what you are thankful for today!!

Things to Look Forward to

First, I still owe three blogs: one about my sister, one about my father-in-law, and another about infertility. I'll get to those. But FIRST..I want to write about what I'm looking forward to over the next few months.

1) My sister's tumors being removed! I'm not looking forward to her having surgery, but I'm excited about the fact that the tumors will be GONE! We will find out more about surgery on May 10, so I'm looking forward to that day as well. Hoping for GREAT news!

2) My CF appointment on May 10. I'm interested (although anxious) to see how my lung function is doing. I've had more stress than ever before in my life and I'm curious to see if my lung function has tanked or stayed about the same. 

3) Infertility treatments starting soon. We finally got our last letter of approval for infertility treatments and therefore we'll be starting them (barring no more red tape gets thrown our way) within a few months!

4) WEDDINGS! This is the year of weddings! We have three weddings we're looking forward to before the end of the year (one of which we are honored to be standing up for).  I'm so happy for all of the couples. I love weddings, and I love to see true love celebrated!

5) The arrival of a new niece or nephew!! Ahh babies! :) That's really all that needs to be said, but I'll include that I'm so excited to have another Murray running around in October!! 

6) Working with my sister to plan her wedding and our trip to Walt Disney World. Ellen's engagement happened awhile ago, but now it's time to start wedding planning (one of my favorite things to do)! Also, we've decided that when she goes into remission, we are headed down to Florida to spend some time with Mickey! It will be the first vacation we've ever taken together (without parents), and we're both REALLY looking forward to it! :)

Honestly, we have SO much to look forward to over the next year or so. I love focusing on the blessings we have, and we truly have been greatly blessed. 

How Would Life be Different. . .

Have you ever had one of those moments where you look back at your life and you realize that hundreds/thousands of individual events have all come together to form your life the way it is now?  I’ve had these moments throughout my life, and I realize how blessed I am for the way things have turned out so far.  I was thinking about how blessed I am with my PFTs and my life right now, and I was thinking about how it would all be different if certain events had never happened.

First, I was entirely blessed that my dad finished his nursing degree right at the time I was born.  He knew the medical terminology, knew various medical issues that were hot topics in the medical community, and he was able to do the feeding tubes I needed without problem.  In addition, he pushed to find a CF center that was not jumping on antibiotics every time a child got sick.  He felt that resistance would be a future issue, and he wanted to let my immune system fight what it could on its own.  Wow, am I grateful for that.  At this point in my life, I’m resistant to a few antibiotics, but thankfully not too many.  Because of this push, I have been at University of Chicago since I was born.  I had one of the best pediatric doctors in the world, Dr. Lester, and she was wonderful. 

Tying in with the above, I am so fortunate that I live close to Chicago.  I can’t imagine how different it had been if I had grown up in a state that didn’t have the massive teaching centers that Chicago offers.  Chicago has numerous teaching centers and I think the standard of care provided at University of Chicago is incredible. Had I been in a state without an established and well-known CF clinic, then my life might be totally different right now.  I have been blessed with an amazing, caring team of doctors who are entirely focused on my health.  In 2008, I had sinus surgery and cultured both MRSA and P.A. in my sinus cavities.  I was told that they had numerous doctors together discussing my case to figure out the best way to treat me.  When it comes to my health, I won’t lie to you, I love being talked about J.

As stated initially, my dad’s career choice was a blessing in my life.  I also, however, was blessed to have the parents I do.  My parents treated me like a normal child from day one. CF was not a disease I was going to die from. They encouraged me to be just like every other kid.  When I was little, I was outside running, biking, rollerblading, and swimming from sun up to sun down.  I came in for lunch and water breaks, but I was allowed to be a kid.  I wonder how it would have been different if my parents hadn’t let me get all that wonderful exercise throughout my childhood. I also wonder, if I had been born in today’s day and age, would I have been playing video games instead of playing outside?

I was also born at the right time.  When I came into this world, CF was advancing and research was being completed.  I was fortunate enough to start on pulmozyme when I was very young, and I was lucky that the vest came out when I was 8 or 9.  I was one of the first people to have it and it helped tremendously as I was getting too big to lay on my parents legs while they beat on me.  I have seen so many medications come into the CF pipeline, and the way CF is treated has completely changed. I am so blessed to have seen all of these medical advancements, and I can not wait to see the other advancements still to come (like the vertex drug that I am very excited about). 

Even heading to the college I did and meeting my now-husband has greatly impacted my CF life.  I am so grateful that he has such a caring heart, and a dedication to helping me fight this disease.  He works to provide us with income and insurance. He makes me compliant with my treatments, and he puts my health first all of the time.  He happened to get a job close to both of our families, and still close to Chicago. Had he chosen a job somewhere else, I would be at a different CF center.  Had he not graduated a year early, he may not have gotten a teaching job, and we may not have been blessed with the wonderful insurance we have now.  I feel like I can never thank him enough for his continuous work and dedication to ensure my health. He is a blessing, hands down. 

Needless to say, I have been extremely blessed in my life.  This blog could go on and on, but these are some of the top things I think about on a regular basis. If even one of these factors had changed in my life, I don’t know that my lung function would nearly be as high as it is. I am so grateful for my parents, my CF center, and my husband. They are all incredible allies against this disease, and they have helped me more than I will ever be able to realize/thank them for.  

5 ways cystic fibrosis has positively impacted my life

Blessed with eternal optimism, I felt a desire to write about the ways that CF impacts my life positively.  I believe I often get bogged down by the weight of the disease and forget to look at any good it has caused.  Although I would never wish cystic fibrosis on my worst enemy, I do believe that it has changed my life in some ways for the better. Below are five of the ways it has changed me or impacted me in a positive way.

5. CF causes me to exercise

As stated in a previous post, I despise exercise.  I honestly believe that if it wasn’t for cystic fibrosis being a critical part of my life, I would be sitting on the couch eating bon-bons and not worrying about exercise in the slightest.  Instead, I am forcing myself to walk and run as much as I can.  Exercise is not just beneficial for my CF lungs but also for the rest of my body!

4. CF allows me to explore new worlds through reading

This may be a stretch since I have always enjoyed reading, but having CF means being blessed with hours of reading time every day.  During my treatment time, I have been able to explore various parts of the world, solve exciting murder mysteries, and imagine myself at Hogwarts.  Even with an inherent passion for reading, I doubt I would finish as many novels if I weren’t confined to a chair with a vibrating vest on me. 

3. Having CF has given me a caring and supportive virtual family

Due to my quest to feel normal despite this disease, I have ended up meeting so many wonderful people online.  I have formed and am continuing to form real relationships with cysters (female CF patients) and fibros (male CF patients) from around the world.  We share in each other’s struggles, root for each other’s achievements, and celebrate life together.  The CF community, on the whole, is a very positive and uplifting community.  It is a family of people triumphing together over this disease and I’m blessed enough to be a part of it.

2. CF has led me to value the time I have on this Earth

I’m certainly not planning on going anywhere soon, but CF has made me realize time is precious.  I have written about this one a few times now, but I have to reiterate it due to its significance.  None of us have a guarantee on the amount of time they will have on this Earth, but many of us don’t realize this until it is too late.  I started realizing it in my teens and it has only become more apparent as I watch major milestones in my life pass by me.  I don’t believe many people in their 20s value time as much as they should.  If they did, I personally doubt they would spend so much of the time they’ve been given on a bathroom floor, drunk and puking.

1. CF has helped me to love as unconditionally as is humanly possible

Tying in with #2, CF has made me realize how important it is to love as fully as possible and to show my love as often as possible.  Since I do have a chronic condition, it is important that I make sure my loved ones know how I feel about them.  I forgive very quickly, and do not hold grudges.  I say “I love you” a lot and I mean it each time.  I try to spend time with friends and family as frequently as possible, and I thoroughly enjoy the time we spend together.  I love creating and capturing memories, and I try my hardest to end every conversation or experience on a positive note.  This is not saying I don’t fight, because I do.  I get mad, bossy, am sometimes controlling, and probably very hard to be around some days, but I try to fix those situations as quickly as possible.  I’m the queen of, “I’m sorry,” always said sincerely and honestly.  Apologizing when I’m wrong and loving each person for his or her personality and strengths is important – CF has helped me realize just how important it really is.

So there it is – 5 ways that cystic fibrosis has made a positive impact in my life.  I’ve wondered on numerous occasions how different I would be if it weren’t for my disease.  Although it’s impossible to be certain, I doubt I would realize or experience the five statements above if it wasn’t for CF. 

Now the question is passed on to you – in what ways have a disease or disability (it could be your own or a family member’s) changed your life for the better?  Think about it and you may be surprised at the answers.