Still Doing Well

I know I have been quite sporadic when it comes to blog posts, and it has been far too long since I have shared anything. To be honest, life has been quite crazy around here, and the time for me to blog is quite limited to even non-existent. I'm trying to make a commitment to myself to update once a month at least, even if it is very brief. I have received several e-mails in the past few months asking if I am okay because readers worry when a CFer goes dormant on a blog for awhile. I appreciate their kindness, and I don't want to worry anyone so I plan on holding myself to this goal as much as I can.

With that said, there isn't much going on CF wise for me which is a fantastic thing to be able to write. I pray it stays that way each and every day. I am now almost 19 months out from having my first child, and my lung function has remained stable around 83%. There are days when I am better at getting treatments in than others, but for the most part I am quite compliant. When I miss a treatment, I work hard on adding one the next day or even in the middle of the night. Some days are easier than others to achieve this, but 100% compliance is a goal I consistently strive to achieve. I attribute my good health to my consistency, my great CF team, luck, good hand washing, and having a very active 1 1/2 year old.

Yes, the light of my life keeps me on my toes day in and day out. She is loud, opinionated, stubborn, generous, loving, kind, and incredible. She has the best personality, and while the traits above can be quite challenging, I also love seeing her testing boundaries and pushing limits. She is becoming her own person, and it's the greatest joy in the world to watch. We are still struggling with a dairy allergy, but we hope she will outgrow it as time goes on. She is a tiny peanut and most people can hardly believe she is even one because of her size. She's our little love, and that is just fine with me! Sydney's favorite activities right now are reading and doing puzzles. We spend hours each day working on different puzzles and reading dozens of books, and I can't tell you how much it warms my heart to see her love both. We try to limit TV time to just when I am doing my treatments, and we are pretty particular about what she watches. Right now the only actual show we allow is Daniel Tiger. I love that it teaches morals and skills on managing emotions. Hopefully as she grows we will continue to limit TV time as we are now.

18 month photos and Christmas photos as well.

Turning the corner to a harder topic, I wanted to update those of you who have been following my sister's journey with Stage IV colon cancer as well. In the last month, she has started with hospice care. She is at home, and we continue to enjoy many days with her as we make new memories and relive older ones together. She ran out of treatment options as each chemo quit working, and her liver was too damaged to pursue clinical trials. It was and still is a hard mountain to climb as we wrap our minds around the future, but we spend time each day feeling grateful for the time we are given and the moments we can share. Thankfully, hospice has made her quite comfortable which gives her more time to spend with family and dear friends.

Surprisingly, this pretty much sums up everything that has happened between April and now. We have been going through the days and enjoying family and friends as much as possible. As much as I love blogging and writing, I love spending each second I can with loved ones and my sweet little girl even more. It may mean less updates and less time to hone my writing skills, but I know that all too soon I won't have the time to spend with my sister, and my daughter will end up in school (much too soon for my liking) so I cherish each moment I have now. I will try my best to keep you all updated more frequently, and thank you again for those who have reached out to me to make sure all is well. It amazes me how kind and wonderful my readers are, and I am sincerely grateful.

I hope everyone has a wonderful Christmas and very happy New Year if I don't manage to update before then! 

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. 

Amazing Thanksgiving Weekend

I've been so busy that I haven't had much time to write over the past few days.  I feel like so much has happened this weekend, and I needed a day to take it all in.

Thanksgiving was incredible.  Wednesday evening was spent with my parents, my sister, her fiance, and his two little girls.  They are adorable and we had fun doing crafts, playing Christmas bingo, and being entertained by all the wonderfully humorous musings of children.  We stayed entirely too late and I ended up getting just a few hours of sleep before we had to head off on Thanksgiving morning to my mother-in-law's house.

Our second Thanksgiving was just as enjoyable, if not more so, than our first.  We all had a fantastic time, ate delicious food, and David and I got to spend time with our adorable niece (almost 2) and nephew (1.5). We also played UNO for a few hours, set up the Christmas tree, and listened to my favorite kind of music . . . Christmas music!!

David's brother also helped us set up a more realistic and easier budget which showed us the importance of me getting a job next year as our insurance copays and medication costs will be doubling and we will be losing money each month.  We were really trying to keep me from working as it limits my exposure and keeps me healthier, but we can't afford to do it this coming year.

I had been looking into jobs, but the budget made me realize that we had NO choice.  Surprisingly, I ended up getting an interview on Monday for a caregiver position for a 2.5 year old little girl.  I figure it will limit my exposure to just one child which is better than subbing for me.  I ended up getting the job and will only be working Thursdays for now.  In the spring it will more than likely turn into 4 days, 5 hours each day which will give us more than enough to keep us afloat.

There have been so many blessings that it's hard to count them this past week.  I am so grateful for the chance to work again and be able to help our family financially.  I also am grateful for my husband and the hard work he continuously does to ensure I stay healthy and happy.  I couldn't have married a kinder, more caring man that's for sure.

Unfortunately tonight I had more blood in my mucus.  I have been doing really well, but tonight after clearing my throat and then coughing I brought up a nickel sized amount.  It worried me, but I'm also wondering if it's from my nose (draining down my throat) as it has been cold and dry here.  If it happens once more, I'm calling the doctor that's for sure.  I think it's so difficult for CFers to walk the line between being too cautious and not cautious enough.  It's a constant juggling act.

I hope you all had a fantastic weekend, and I also wish you all a blessed and happy week ahead.

Extremely blessed

We received the results of David's genetic test today, and we found out that he is NOT a carrier for cystic fibrosis. This is such fantastic news and we are so thrilled!!

Unfortunately, he is a carrier for another disease: Alpha 1 antitrypsin deficiency which effects the liver and the lungs.  I have to get tested to see if I am a carrier for this now and therefore will be seeing a genetic counselor early December.

We are so blessed and I am so thankful that David is not a CF carrier.  What a wonderful piece of news for our Thanksgiving celebrations! :)

Happy turkey day!!!

Two Thanksgivings = a very happy belly!

Wow, it's hard to believe that Turkey day is finally upon us! For the past 5 years now, David and I have been enjoying two Thanksgiving dinners every year.  It's really the best way go about the holidays if you ask us because we get to experience each holiday we love twice!

This year, we will be spending the day before Thanksgiving with my family.  My parents are making turkey, stuffing, green bean casserole, cranberry casserole, mashed potatoes, sweet potato casserole, homemade potato rolls, and I'm bringing corn casserole and strawberry fluff.  My mom is also taking the time to make a pecan pie which ought to be quite delicious as my mom is a pretty good baker!  For those of you who do not live in the United States, it's probably hard to fathom this much food for a small family get together.  It's a lot of preparation and dedication in order to get it all on the table in time, and we always feel bloated and tired a few hours after enjoying our meal.  Despite the work, it's worth it when you bite into that savory turkey! Thankfully, I'm enjoying two meals without any of the work (other than  little bit of clean-up)!!!

Actual Turkey day will be spent with David's mother, his brothers, their wives, and their children, and his great-aunt. It should be a fantastic day filled with more good food and lots of enjoyment with our 1 1/2 year old nephew and almost 2 year old niece.  My mother-in-law always goes above and beyond with Thanksgiving dishes as well.  We usually have a very similar menu to the one my parents make, but she also makes an amazing lasagna or mac % cheese every year as well. Absolutely delicious.  Usually we spend the majority of the day there afterward just hanging out with the family, and I'm looking forward to it this year!

Tomorrow, prior to heading to my parents, we will be making a trip to U of C for the sperm analysis to be completed.  My husband wasn't happy having to take a day off of work for it, but it has to be done and it seemed like a 5 hour day right before  holiday was the best time for a sub to take over.  The kids are going to be completely done with learning anyway for that day.  

As we get so very close to Thanksgiving, I want to share two things that I am grateful for today.  The first wonderful blessing was a visit from my college roommate and one of my best friends.  She is one of the best women in the world, and I am so blessed to have gotten to know her as well as I have over the years.  A couple of years ago, she moved away from Illinois with her husband and therefore only makes occasional trips back here.  She is in town for her birthday this year, and she took the time out of her schedule to stop by, have dinner, and just hang out like we did back in our college days. It was so wonderful!! What a blessing!

I am also grateful for insulin.  Up until this summer, I have put off going on insulin for as long as possible. Once hearing that I had to gain the weight, I reluctantly started using it.  Well, with Thanksgiving here, I am so grateful to be on it now.  I used to restrict myself, especially at holidays, but this year I'm eating as much as I want of anything and everything.  I'll be able to just cover myself with insulin and not worry about it.  Look out turkey...here I come!!

I doubt I will post again before Thursday so I sincerely wish you all a blessed, family-filled, safe, and happy Thanksgiving!! 

Our Harvest Puppy!

I had to post this just really quickly as I thought it was too cute to keep to myself!  We had Maya groomed today (we do this every 2-3 months).  When I picked her up she looked just adorable in her Thanksgiving/harvest bows. They are orange with a golden brown material underneath.  The orange sticks out but the brown blends into her fur.  Regardless, I had to share the photo.  Being a energized golden retriever, she wouldn't sit still for a nice photo, but you can at least get a glimpse of how cute she is. 

Today I am thankful for the skilled groomer that we take our little baby to. I am not good at keeping her looking good, but the groomer spends a lot of time and love on her to make her look beautiful, feel better (by taking out the mats from her fur), and smell great! 

Happy Turkey week everyone! :)

Still exhausted, must be stressed, but currently no more blood.

Wow, what a title!

I'm going to begin by saying that I can't remember ever being this exhausted besides when I have had a PICC line.  The last 4-5 days I have been struggling just to make it through the day.  I wake up and find myself worn out just a few hours later even if I haven't done much.  I'm either fighting off something or extremely stressed (or both).

That leads me to my next point.  I must be stressed.  The only thing I can possibly think that would be stressing me out is the infertility information overload.  I can't think of a single other stresser right now in my life.  The reason I must be stressed is because I am breaking out like I'm a teenager all of the sudden.  I have always had acne on my chin (ever since I was a teenager), and it doesn't seem to ever go away fully, but the last 4-5 days I have had HORRENDOUS skin.  My cheeks, nose, and forehead look like I'm 14 again and I'm not really appreciating the sudden flashback to high school.  Not only is it acne, but it's cystic acne which hurts and looks bad.  I will definitely be wearing makeup for the holidays, that's for sure!!

As much as I hate the above two issues I'm currently dealing with, I will take them for an entire year straight if it means that my mucus stays blood-free! For the past two days I haven't coughed up any bloody mucus at all (Yay)!! My lungs have been feeling better and less junky, so hopefully my lungs have healed up and I can resume Hyper-sal on a regular basis (I feel better when I use it, that's for sure).

Today, I'm thankful for my husband letting me sleep in this weekend. I have been feeling quite rough and my sweet husband laid in bed (even though he couldn't sleep) for 3 extra hours, just so I wouldn't wake up. I finally woke up on Saturday at 2 PM! I slept for almost 14 hours straight and I still felt exhausted a few hours after waking up.  It was such a nice and wonderful thing for him to do for me and I'm grateful I got the extra (much-needed) sleep!  I'm also thankful that the last two days have been blood-free! :)

I did also post a new page of pictures of David and me (with our sweet little golden retriever).  There aren't too many, but they are some of my favorites! 

Preparing for Thanksgiving and Junky Lungs

Well! It's that time of year! Thanksgiving is now less than a week away, and the black Friday ads are popping up everywhere.  Turkey Day is truly one of my favorite holidays (and I would imagine many other cysters and fibros might agree with me).  Any holiday which encourages high fat, high calorie, super-filling meals, which I don't have to prepare, is perfection!  I can't wait to sit down to a nice huge plate of turkey smothered in gravy, smooth whipped potatoes bathed in butter and gravy, creamy green bean casserole topped with crunchy fried onions, sweet potato casserole, corn casserole, cranberries, Jello fluff, and pumpkin pie. Anybody else hungry yet?

This year we will be celebrating with my parents and sister the day before Thanksgiving, and then will celebrate with David's family on Thanksgiving day.  I'm planning on making something for each get together, though I have no idea what to bring. I'm just glad we will all be together as a family and able to enjoy a filling and delicious meal! 

Until then, I will continue to worry about my lungs a bit.  Last week I had blood in my mucus which quit after laying off of the Cayston and hypertonic saline for a day or two.  Yesterday, I coughed up more mucus with blood in it.  I really really hate seeing that. I'm grateful that it's not pure blood, but it's still scary, that's for sure.  Today I've been extremely exhausted and my lungs are sore so I'm hoping it's not a sign of a bad lung infection coming on.  I have been coughing way more than normal the past few days so that could easily be the reason for both of those feelings.

I did get in touch with my CF nurse practitioner, Penny.  She was the one who suggested laying off of the hypertonic and Cayston to begin with which did help.  I found out I have 3 different strains of MRSA in my lungs and I'm allergic to one of the best drugs to fight off MRSA.  This means if I have to do a PICC line it will be massive..huge...last-resort kind of antibiotics.  That might be why coughing up bloody sputum scares me so much.  So, hopefully as the week continues my lungs will heal up and start feeling better!! 

Today I am thankful for clean drinking water.  I know this seems odd but I really think that too many of us take this for granted.  I was putting a new filter into my PUR water pitcher and I realized that we are so blessed to have an abundance of clean, delicious, water.  There is nothing that tastes better than ice-cold water when you're thirsty (at least in my opinion).  

One Step Forward . . . Two Steps Back

Sometimes, when you really want something, it seems like progress almost moves backward before you start to see any results.

After posting yesterday I got the news from my doctor that as far as my lungs are concerned, there is no reason not to go through with IVF.  I was and still am elated and overjoyed about this factor.  She said that there are risks with IVF, but it shouldn't be any more prevalent just because of my cystic fibrosis.  Fantastic news!! 

Then she dropped the other shoe.  

The last time I was up at clinic my liver enzymes were much higher than normal.  I run somewhat high liver enzymes always due to the CF, but these were about 2 times as high as normal amounts.  She said that some IVF drugs are rough on the liver and therefore I need to see a liver specialist prior to doing my IVF treatments.  Surprisingly, I was ok with this information when she gave it to me.  I took down the specialists number and realized that this was just another step in the process.  

After hanging up with my doctor, I immediately called the scheduling department for the liver specialist.  Scheduling informed me that the earliest appointment is the last week of January/first week of February 2012.  This part...I'm NOT ok with.  

There's no real reason this should bother me as I realize that seeing specialty doctors often comes with a long wait, but when I was told my first cycle of IVF would be in January/February I was excited, and now I'm being told we have to wait even longer.  Yes, I know it's only another couple of months.  Yes, I realize that the ultimate goal is for me to be healthy to carry a baby. Yes, I realize that God has a right course for me and that it will work out the way it's supposed to.  No, I'm still not ok.

Ultimately, this is just a bump in the road, but once my husband and I made the decision to start a family every  month without a positive pregnancy test has been torture.  I'm so ready to be a mommy and being told that your dream has been delayed even more is hard to hear sometimes.  I'm also worried about the liver enzyme numbers.  I'm seriously hoping that nothing is wrong with my liver outside of normal CF inflammation and such, and I have to wait til next YEAR to find out. 

Until then, I'll just cross my fingers that all is well.  Is 2012 here yet? Please?

With that said, I think it's appropriate to be thankful for fresh starts.  I love the new year because it always seems like a new beginning and that anything is possible. There is no logical reasoning why problems should stop at the end of one calendar year, but sometimes it certainly seems to work out that way.  I love being able to make resolutions (and usually break them), and I love reflecting on the past year and creating a plan to make the upcoming year even better.  It seems like a second chance and it happens every twelve months!  I can't wait for New Years Eve this year!!

A writing rut

Despite the fact that dear hubby and I had a wonderful weekend, I am in a bit of a writing rut.  I feel desire to write, but everything that seems to come out is incoherent trash.  Therefore this is going to a very brief update.

David and I are really coming to terms with the infertility issues we are facing.  I even went to a baby shower yesterday and was able to get through it without any feelings of resentment (and only a twinge of sadness).  David also wanted to tell his parents so we told them over the course of the weekend as well. They are both very supportive and keeping us in their prayers.  At this point, we need to schedule David's semen analysis and then just wait for my period to continue.  Technically, I'm still not sure if my doctor has given the green light for the treatment, but I don't want to bother her again (it's only been a week).

My lungs have been a bit junky over the past week, but it seems like they are getting better on their own.  Last week I did have some blood in my sputum, but I think it came from my sinuses/throat.  I did, however, back off of hyper-sal and Cayston for a day or two to let whatever was open heal.  Hopefully everything stays healed and no more blood presents itself.

Other than that, I'm just getting ready for Thanksgiving (a week and a half away!!!) and Christmas.  I'm ready to decorate the house, and I think I may start hauling boxes downstairs as early as tomorrow.  Decorating usually takes me a full week for Christmas.  I can't wait to share pictures of the house and how cute it looks when I'm done this year.  Each year, we add to our Christmas decorations...I wonder what our new addition will be this year??

To get me into the Christmas mood, I've been blaring Christmas music (yes, I'm one of those people).  I have been listening to it since November 1..possibly a bit earlier?  Our one radio station here changed over to 24/7 Christmas music Wednesday of last week which has just caused me to get even MORE excited.  I'm sorry to those who hate Christmas music and early Christmas decorating. I know I'm a bit eccentric, but I love it :)

As we head into another full week, I am grateful for family dinners.  My parents had us over last Friday and it was such a nice time.  We had pot roast with potatoes, carrots, and garlic bread.  Both David's family and mine really enjoy family dinners together. We are very blessed to live so close to our families and to be able to share a nice meal with them on a regular basis.

What are YOU grateful for today?

Winter is coming!

Winter is coming! Today is definitely trying to tell us that fact in the Chicago area. I woke up today and took David to school, as I always do, and it was surprisingly warm outside.  Then, about a half hour after returning home, the wind started to pick up.

I sat watching the leaves whipping through the air and the tree branches bending as the wind beat them all up.  As I looked at all the bare trees and bushes, and my dying mums in the front of the house, I realized that November has definitely arrived in full force.  The power of the wind this time of year never ceases to amaze me.  Today, as we approach afternoon, the temperatures are dropping and the warm breeze is now turning into a chilly, wet, and howling wind. In fact, the forecast is now predicting our first snow flurries this afternoon and tomorrow, and although it won’t stick, it’s still snow. 

Snow.

When I was little snow used to excite me to no end. I would wait for the first snowfall of the year and all additional snowfalls, and I would play for hours at a time.  Hot chocolate was my best friend, and I vividly remember putting my boots and gloves over the heat vents throughout the house and then tearing off my three layers of soaking wet socks. 

As I’ve aged, my view of snow has changed as well.  I still love the first snowflakes of the season, and words lack the ability to describe the quietness and peacefulness of the first blanketing snowfall.  There is something about the untouched, glistening snow over the ground that calms me and warms me.  I also long for snow on Christmas Eve into Christmas Day.  I love waking up to a winter wonderland as we celebrate Jesus’s birthday with our family.

 

The day after Christmas, however, I’m done with snow for good.  I don’t want to see it, I don’t want to scrape it off my car, I don’t want to shovel the driveway, I don’t want to clean it up from the floor after the dog has gone outside, and I definitely loathe driving in the stuff.  Unfortunately, after Christmas is normally when our heaviest snows arrive.  Last year, early February brought the blizzard of 2011 which left us homebound for 2 days while we dug ourselves out of the 4 foot drifts.  I don’t doubt that this year we will see some heavy snows in January and February again, but when they come they are just irritating, annoying, and troublesome. 

View from our garage this past February.  Our front door had a higher drift, but it didn't photograph well.

Also, last year I started having a harder time breathing in the cold. I HATE the severe cold of winter.  I practically lived indoors last winter, and I didn’t do much of the shoveling because of how my lungs felt. Hopefully, this year will be better, but I’m not putting any weight on that hope.  David also hates the extreme cold.  Because of this, we are REALLY considering getting remote start for our car (which sits outside the entire winter) as a Christmas present to each other.  It’s not too bad cost wise, around $400 for parts and labor, and it would mean we wouldn’t have to wait for the car to warm up before driving off somewhere.  It’s a total luxury, and we really don’t need it.  But, we’re definitely considering it!

With that said, it’s time to state what I’m thankful for.  On this cold and blustery day, I’m thankful for heat, warm coffee, and cuddly blankets.  David and I have become coffee fanatics in the past couple of years, and a warm cup always seems to do the trick for our mood.  Also, I love the feeling of curling up under a snuggly blanket when the air around me is cold.  I feel secure, calm, and happy under blankets.  I know there are many people who suffer from cold, especially at this time of year, and I’m grateful to have heat, warm drinks, and blankets to keep me nice and toasty warm. 

I hope you all stay nice and warm on this chilly November day, and I hope you are able to find something to be thankful for today.  

T.G.I.F.

I posted this blog to my wordpress account as well.  Therefore, although it still encompasses what's going on in my life, it is DEFINITELY not detailed in any way, shape, or form.  I state that we've had an exhausting week physically/emotionally, but in reality that might just be the understatement of the year.  Regardless, I promised I would post whatever was posted there, on here. So, with that said, here it is:

Numbers 6:24-26
“The LORD bless you and keep you; the LORD make his face shine upon you and be cracious to you; the LORD turn his face toward you and give you peace.”

Happy Friday everyone!  I hope you are all doing well and have had a wonderful and blessed week!

This week has been extremely stressful and emotionally/physically draining for us.  My husband and I are both ready to just go out for a date night tonight and put this week behind us.  We have been reinstating “date night” into our lives, and it feels good.  It provides us with something to look forward to every weekend, and it allows us to just focus on each other for a few hours every week.

Our date nights aren’t usually expensive, but they’re fun.  We typically take out a frozen pizza after I pick David up from work.  We eat at home and then head out to catch a movie in the cheap show.  Ahh, the cheap show.  We have an amazing theater just about 15 minutes away from us and it shows movies that are about to come out on DVD for a highly discounted price.  We saw Crazy, Stupid Love last week, and I’m sure we’ll see something fun this week as well.  We then sometimes head to the mall or other stores to window shop (this is really more for my benefit than my husband’s).  Then, it’s back home where we typically watch another movie or TV show together on the couch.  By the time Friday ends, we’ve spent about a total of $7 (pizza, movie tickets, and gas included) for a wonderful evening!

Other than date night this weekend, we are also looking forward to family birthdays! We will be celebrating my husband’s brother’s birthday, and his great-aunt’s birthday! I always enjoy celebrating birthdays, and David’s family (my family) always has fun with birthdays.  For David and me, the most important part of the birthday is the gift-giving process. We are both givers, and we love watching reactions when our gifts are opened.  We have both said numerous times that we would much rather give gifts than receive them!

Time-change is also this weekend, which means we gain an extra hour of sleep!  Gaining an hour of sleep is one of the best feelings!  It will also be nice to see sunshine when driving David to work again. The last few days it has been pitch black when we’re headed to the school.  It’s depressing and hard to wake up when it’s that dark outside. I can’t wait for this time-change!!

With all of this fun, there must be work as well.  David will be spending a significant portion of time working on schoolwork this weekend, as he always does.  I really wonder if his fellow colleagues have any idea how much dedication, time, and effort he puts into these kids every single day.  He is truly remarkable!  While he works, I will be organizing various parts of the house, going through bills, taking down Halloween decorations, and any other odd jobs that I can find to do (there’s always plenty)!

All in all, it should be a fabulous weekend and a wonderful way to unwind and recharge.

 

Before I go, however, I need to share what I’m thankful for today.  This morning, I thought it was appropriate to say that I’m very thankful for weekends.  We always take the time to enjoy our weekends and typically we see some part of our family each weekend as well.  We are both thankful that no matter how hard the week has been, we always have Friday night, Saturday, and Sunday to call our own and live out to the fullest.  There are some weeks, like this current one, where we would be LOST without that time. 

I wish you all a happy, blessed, and enjoyable weekend! 

Shame on me!

Ok, while writing my previous post I completely forgot to tell what I was thankful for today. Shame on me!

Today, I am thankful for laughter.  I am thankful for the Lord's healing touch, and how he has provided laughter as a way to ease pain for us.  Today was beautiful, despite the ups and downs I felt. David and I laid in bed tonight, and we started talking about random things, and we just started laughing. And let me tell you, it wasn't the small giggle laugh either. It was the full on, belly-hurting, can't-breathe, head-pounding kind of laugh.  It was the kind of laugh where you're pretty sure you're going to die if you don't stop to get air.  It was pure bliss and raw beauty together.  Although we're both trying to wrap our heads around this twist of events, and even though we're not sure how Monday will go or what will be said, today was a bit of medicine for our hearts and spirits.

I'm also thankful for my bestie today.  I have so many beautiful friends who will always be there for me and they are all blessings. Today, however, my bestie just sat with me for hours. She sat there, playing with our golden retriever, just listening to me talk or sitting in silence, or watching me fill out paperwork.  She didn't care that we weren't doing anything at all, but she was there for support.  She ended up going back to school this year, and that has allowed her time to hang out with me every week. In my opinion, God really worked his magic here, because I need her right now and she never fails.  I would be blessed even if today was the only day she's spent with me like that, but it's not. Her patience, understanding, sympathy, and wisdom never cease to amaze me.  She is a true blessing in my life.  

Welcome November

Winter is an etching, spring a watercolor, summer an oil painting and autumn a mosaic of them all.  ~Stanley Horowitz


Happy November everyone!


I thought this quote was beautiful, and I felt a need to share it with you all.  


November is historically a good month for me. I always feel a peace and warmth in this month, and today as the sun shone brightly across the sky, and the remaining leaves were fluttering down to the ground, I felt calm.  Since November brings Thanksgiving, I've decided to include at least one sentence in each post about what I'm grateful for this month.  I believe that gratitude is extremely important, and November is the perfect month to share it with others.  


Today, November 1, 2011, I am grateful for all of my readers.  I am continuously blessed to have people around the world reading and commenting on my writing. This blog has been life-changing, and I am so glad that I have found an outlet for my emotions with CF that also allows me to teach.   There are days where I feel like I have nothing worthwhile to say and others where I want to shout til the world can hear me.  I also feel like you, my readers, make me dedicated to posting all the time. This dedication, in turn, creates a better writer out of me.  From the bottom of my heart, thank you all for taking the time to read my blog.  


I called my hospital regarding my ultrasound results, and I should be hearing a call back about them tomorrow. My doctor's nurse confirmed what the tech had said: the right ovary is invisible and there are multiple cysts in my left ovary. She was unsure if it was urgent or not, but said that she would have the doctor check the scans tomorrow and she would call me back. I'm eagerly awaiting that phone call.  


Other than that, not much is going on around here. I'm finding the more I try to control things in my life, the more out of control they become. I think this is God telling me to let him take over - that's my goal for this month. I feel a deep need to connect spiritually with the Lord, and I'm planning on working on it as much as possible.  I know faith has helped me heal many wounds, feel confident in life, and worry less. I need to start getting back to a faith-driven life desperately.  I'm just thankful that God gives us many chances because I seem to screw up a lot :-/


As we ease into this month, I hope you all are having a wonderful week. I challenge you to also think about what you are grateful for each day for a month straight :) It helps put everything in perspective.  

Blogging has changed me for the better

I’ve been blogging and reading blogs for almost 2 months now, and I’m amazed at how it changed my perception toward my disease and life for the better. 

I never thought that I would be the type of person who had the dedication and desire to blog on a regular basis.  I love writing, but to until a few months ago, sharing my story with the world seemed selfish to me.  I have come to realize that while there is a “selfish” aspect to blogging, it extends far beyond that.  I like to keep track of where my viewers come from, and the fact that people from around the United States and from other countries have viewed my blog amazes me. It means that while I’m enjoying venting and writing about my journey with Cystic Fibrosis, others are enjoying it or learning from it as well.

I launched my Wordpress site about a month ago, and I have had tremendous response there as well. I have subscribers, and have received over 500 views on that page. I’ve had people sharing my articles and rating them, and I’ve officially been tweeted.  It’s one of the best feelings in the world to gain acknowledgement for what you’ve written and in turn know that you are slowly raising awareness about cystic fibrosis. 

In addition, I’m slowly becoming a better writer (at least in my opinion) also.  I’m working on phrasing sentences better, and trying to make my writing enjoyable to my readers. Since I hope to one day complete a novel, this skill is critical for me to learn.  Blogging offers the perfect platform to hone my skills and gain personal response from readers.  I look back at what I wrote two months ago, or even last month, and feel that my current writing is stronger.  I’m so glad that I have gotten into writing blogs. 

Even more important, however, I have been thoroughly enjoying reading blogs.  I have a good number of blogs that I check daily for updates.  I eagerly await new posts so that I can see how my fellow cysters and fibros are doing.  To me, reading other blogs feels like I am offered a chance to read their journal or diary. I feel connected to others in a deep way, and it never ceases to amaze me how much people truly expose their soul in blogging. New posts are like candy to me, and I also enjoy commenting on what I’ve read when I feel I have something pertinent to say. 

It also amazes me how many of the authors reply to comments that I (or anyone) makes. They enjoy the feedback and work hard to acknowledge comments and answer questions. It’s truly remarkable.  I am surprised and encouraged by their dedication to their readers, and to raising awareness for CF.  I cannot emphasize enough that the group of authors I follow are truly amazing and inspirational people. 

I also have to say that I have gained a “family” through this blogging experience.  I feel that I know a few girls, in particular, very well.  We are all on a similar road in our lives and beating CF on a daily basis.  I feel like they are my “go-to” people when I have a question, and I look forward to talking with them about new changes (or lack of changes) in their life.  My husband, family, and friends are a wonderful support system that I wouldn’t change for the world, but there is something to be said for my “cysters.”  My family/friends sympathize with me, listen to me vent, and love me unconditionally, but my cysters understand exactly what I’ve gone or am going through.  They know what it means to gag from coughing so much, to have a CF belly, to be upset when your PFTs go down, to feel the sadness, confusion, and anger of a fellow cyster or fibro passing away before his or her time, and to feel the frustration that this disease carries with it daily.  I am so blessed to have these people in my life and I can’t wait to continue following their journeys. 

Finally, blogging has led me to discover www.cysticlife.org.  I am so grateful to its creators, Mr. and Mrs. Sharpe! It is the best outlet for cysters and fibros in the entire world. The site focuses on offering a POSITIVE and ENCOURAGING community. If I ever have a CF question, I head there right away. If it hasn’t already been asked, I can usually pose a question and receive a few responses by the end of the day. The “family” that is created on that site is incredible. I have learned more about CF than I ever knew before, have gained a more positive outlook for this disease, and have gained perspective in life all from this site.

All in all, these last two months have been a wonderful change for me. I’m growing daily as a cyster and a writer and I’m gaining a sense of family and community through blogging.  I’m so grateful for all of my continued readers who push me to make my posts better and more interesting, and I’m grateful for my fellow writers as well.  I am so proud to be part of this cystic fibrosis community, and I’m so blessed to have people who care about me enough to follow my story.  I live such an amazing and blessed life - hard to believe it’s all real at times. J

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.  

Clinic Day

Happy Thursday everyone!

First, I want to thank those of you who took the time to comment on my last blog about the possible reasons for my heart problem the other night.  It was nice to see suggestions/comments about it, and it made me feel a lot less alone in the situation. I greatly appreciate it.

Now, to talk about my day up at the clinic.  Today has been one of those days where the rain takes turns between coming down in buckets and lightly misting over everything.  During our time driving up to Chicago and back, it was thankfully mostly misting with only one incidence of bucket-pouring rain.  In addition, the traffic was horrendous. We live about an hour southwest of Chicago, but we spent two hours in the car this morning. Neither rain nor traffic make me very happy when driving, so I was stressed on the way up.  Thankfully, we made it there safely and my doctor was still able to see me.

I went in and immediately was weighed in at 115.6 (two months ago on their scale, I was 113.1, so I was very proud of this weight).  Next, my PFTs were done by someone other than my normal respiratory therapist. That's always a bite, because Patty makes me blow harder and coaches me more than the other girl did this morning. Regardless, my PFTs were 83% which is 2% up from where they were and right around my baseline. This made me really happy, but I still want to get them higher.

Then my nurse practitioner, Penny, came in (I did tell her you said hi, Colleen! She says "hi" back! :) ) to see me.  I love Penny. She is amazing at her job and I am so grateful that she is at my CF center.  She told me not to worry about the heart situation unless it happens again, but I think we are both leaning along the lines that it was related to the Levaquin.  If it happens again, I'm to go right to the emergency room and let them capture it on an EKG.  At least we have a plan, which makes me much happier about the situation.

I also asked her about the prevalence of hemoptysis and pregnancy. She said that being pregnant does not make you have an incidence with hemoptysis, which was very comforting. She said that if you have had hemoptysis in the past, then you are more likely to have it again, but not necessarily at the same time. It made me feel much better about getting pregnant.  Along those lines, she also referred me to a high-risk OB whom she knows really well, so I feel 100% taken care of now.  I have an appointment coming up with the high-risk OB, and then we can figure out the TTC part of our life a little more thoroughly.

We did make two changes right now for my treatment plan.  The first change is that I will be doing hypertonic saline twice a day, instead of once. I have had better luck coughing up sputum with the hypersal, so hopefully this will help improve my lung function.  The second change we made was regarding my insulin. I shared with Penny how frustrated I was with CFRD and she went on to explain how different CFRD and how each individual case is different as well.  So, when I explained my 3 hour highs after dinner (even with insulin), we decided to try taking my insulin after dinner rather than before dinner. This should hopefully cover the 3 hour spike that I've been having.

Overall, my CF appointment went amazingly well, and I'm so blessed that my lung function is back up to 83%.  I also managed to get a flu shot today, see my ENT, and got my yearly lab work done (6 vials of blood, yay)! My ENT said that my sinuses show that I had a sinus infection, but they look like they are doing better. That's definitely a good thing!  I'm so blessed, and so grateful for my positive appointments today. I now can't wait to see the high-risk OB and see what he has to say!

The Weekend Recap

Happy Monday all!

This past weekend was extremely busy and jam-packed with fun.  It started off Friday night when I was able to spend the entire evening with my sweet husband, doing absolutely nothing.  We both live for those nights because they’re quite rare around our house. Usually, we’re cleaning, working, visiting family/friends, or doing random errands/chores.  So Friday was wonderful.  I was able to see Forrest Gump for the second time (I didn’t like it the first time and the hubby convinced me to give it another try – so glad I did), and we cuddled on the couch the entire time.  Perfection may not be a strong enough word to describe Friday evening.

Then, early Saturday, we got up and started cleaning the house which desperately needed to be done.  I do a lot of cleaning throughout the week, but the vacuuming and use of harsh chemicals is saved for David because of how both activities make my lungs feel afterward.  Within two hours, the house was nice and polished and my mother-in-law had arrived to spend the day with us.  We went down to a local festival where we proceeded to eat a pork chop on a stick (most amazing food in the world), corn on the cob drenched in butter, and a deep friend warm apple dumpling topped with vanilla ice cream and caramel sauce.  Talk about food heaven – it was incredibly delicious. 

I didn't think to grab a picture of the food (silly me), but I did grab a picture of a gorgeous tree at the festival!

I also considered this my OutRun CF time.  Since I registered late, and did not receive a shirt yet, I decided to walk this past Saturday and then do a walk/run as soon as I get my shirt. My bestie had offered to run with me Saturday morning, but I unfortunately slept in much later than I expected (I think the antibiotics have officially kicked in and are wiping me out).  Hopefully she will be willing to walk/run with me the second time while I wear my shirt.

After spending a few hours at the festival, we headed back the house where David, his mom, and I enjoyed a wonderfully delicious cheese and mushroom pizza (I know we shouldn’t have been hungry, but I promise you we were).  It was a wonderful time and I thoroughly enjoy the visit, as I always do when she comes over.  I am very blessed to have a very caring and supportive mother-in-law.  I can imagine many other cysters/fibros may not be this fortunate.

Following the pizza, David’s mom took off and we spent the rest of the night at a Chicago Improv show with two of our best friends.  I laughed and surprisingly did not find myself in one coughing fit the entire night – I was shocked!  It was a great show and we were very fortunate that our friends invited us along for free!! So, we spent the night out in Chicago and spent no money – pretty incredible if you ask me! 

We didn’t end up getting home until about 2:30 in the morning, at which time I had to do my treatment prior to crashing.  I was actually pretty proud of myself because even a few years ago, I would have skipped the treatment to get more sleep.  Come 3:30 in the morning, when I finally rolled into bed, I fell asleep immediately.  We didn’t wake up until noon on Sunday and then spent the entire day preparing for the week – David has lesson planning, papers to grade, and more.  I help by bouncing ideas around with him and working around the house. 

Today, he’s back to his usual 12 hour days at the school, and I worked hardcore on cleaning the fridge (which is why I haven’t posted until this afternoon).  Remember last week when I posted about the delicious turkey and sides that I had made?  Well unfortunately, the fridge door caught on an inside drawer last Thursday, and the fridge remained open for 5 hours.  Sadly, we had taken a nap and spent time working in the living room, so we didn’t notice the door until all the food was ruined.  Thankfully, my medication remained semi-cold, but all the meat, milk, cheese, and other odds and ends in the fridge had spoiled (I tried about 5 different things, each being spoiled, before I decided to toss everything). 

The good thing about the fridge fiasco is that I rarely get the chance to have an empty fridge.  This means, I rarely take every single shelf/tray out of the fridge to clean it thoroughly.  So today, prior to getting groceries, I decided to take the time and scrub every single thing down.  I don’t think our fridge has been this clean since we moved in, and I must admit that I’m very proud of it.  Below is the result of my efforts. 

I hope all my readers, family, and friends had as wonderful a weekend as we did! I also sincerely wish that you each have a love-filled and blessed week ahead!!

Completely clean and empty (aside from my Cayston)!!

I hope all my readers, family, and friends had as wonderful a weekend as we did! I also sincerely wish that you each have a love-filled and blessed week ahead!!!

I am also planning to write a blog about our progress (or lack thereof) TTC in the next few days.  Stay tuned!!

Just a question . . .

My mom told me she had heard this question posed on a show she was watching, and I have been thinking about it ever since (the words may not be perfect, but the idea is there):

"What if you woke up tomorrow to find yourself surrounded by only the things you thanked God for yesterday?"

Just something to think about. . .