Friday, September 30, 2011

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. . . 

A quote for Friday


“I love writing. I love the swirl and swing of words as they tangle with human emotions.”
― James A. Michener

Happy Friday to all my family and friends!

Fridays are either 1) really busy for me, or 2) great writing times for me.  Over the past year, I have come back to my love for writing.  I used to write my emotions down a lot when I was younger, and I found peace and comfort in those words.  Then, I stopped for a long period of time and I realized I didn't understand myself and my feelings nearly as much as I used to when I was writing.  So, a year ago I decided to start working on a novel.  This novel may never become anything, but the act of writing is beautiful, emotional, and life-changing.  I love spilling all the contents of my heart onto a blank screen and then rearranging them into a beautiful melody.  I love rereading what I've written and being proud of it.  I may never write well enough to be published, but I'm certainly going to try.  I owe a lot of this confidence to my blog, because it is helping me polish my writing skills.  I have a long way to go, but I'm learning with each post I create.

If you can't already tell from above, I woke up feeling calmed and rejuvenated this morning! I was noticing the beautiful colors of the leaves on the trees this morning, and I felt the change that I always associate with Fall.  I feel that I'm entering a very positive time in my life, and I hope that I am able to recognize all the daily blessings I receive and am able to take the time to fully appreciate each one.

Today is going to be  a very busy day for me.  I have DirecTV coming to set up a new DVR box, have to walk in to get an EKG done at some point today, and I have a dentist appointment this afternoon.  In the mean time, the house needs cleaning, the laundry needs to be done, and I still have a few remaining decorations to put up throughout the house.

As I fly through this busy day, I still am praying for Nicole and her family and my heart sincerely goes out to them.  I personally feel that she is at peace and is actually living her dream out now - her dream to be a mother.  

I doubt I will have time to write tomorrow since I will be busy with Outrun CF, Corn festival, and then an improv show with two of our best friends!   With that said, I hope everyone has a wonderful and blessed Friday and Saturday.  Remember to breathe deeply, laugh loudly, and live fully this weekend!

Thursday, September 29, 2011

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.

Wednesday, September 28, 2011

Antibiotic Appetite


My “Antibiotic Appetite”

I’m not sure if other cysters and fibros go through this, but I rarely want to eat whenever I’m on antibiotics.

Over the past week or two, I have been craving Thanksgiving dinner with all the trimmings.  So, when I saw turkey on sale last week I decided to pick it up.  Yesterday, I proceeded to make roast turkey with stuffing, creamed corn casserole, green bean casserole, and gravy to go over everything.  I was so proud of myself, because this meal is such a high-fat, high-calorie meal that can now be eaten as leftovers for days!! 

It had been two years since I last made turkey with sides – I’ve been relying on my parents and mother-in-law for Thanksgiving dinner for the last few years.  Two years is a long amount of time, and I definitely forgot how to prepare a turkey.  I immediately became best friends with Youtube, and the smiling turkey woman in the video walked me through the prep work pretty well.  Sadly, this turned into one of those meals where you end up at the store a dozen times before it’s done.  I was a bit scatterbrained yesterday and kept forgetting items for the sides.  I also had my meat thermometer break when the turkey needed to be taken out of the oven. Needless to say, my local grocery store loved me and my wallet yesterday!

After all this hard work and numerous trips to the store, it was quite disappointing to finally get the food on the plates and not want a single bite of it.  I call this problem, my “antibiotic appetite,” and I did not expect it to hit this early into my course of Levaquin.  To be fair, it doesn’t matter what antibiotic I’m on, as long as it’s strong enough to kill the bugs in my body, it leaves me with no appetite.  So I stared at the food, pushed it around with my fork a bit, considered giving it to the dog, and ultimately forced myself to eat it.

When I woke up this morning, the smell of roast turkey still lingered in the air and made me queasy.  I ate a single waffle for breakfast and forced it down with a glass of milk.  I know I will have no desire to eat lunch or dinner, but I’ll get to make myself do it anyway.  It’s one of the things I hate about CF.  It doesn’t matter if I don’t want to eat, I have to in order to keep my weight up (lack of desire to eat happens even without antibiotics, but the antibiotics make it worse).  There are also times when I would much rather have a nice lean salad and a piece of fruit, but instead I wind up choking down high-fat, high-calorie, and high-protein foods.  I sometimes find myself feeling like a human waste receptacle who wears a sign stating, "I’ll take all the fatty stuff no one else dares to eat."

So for the next 12 days, I will find myself forcing food into my stomach with no desire to eat.  I’m probably going to lose the weight gain I have managed over the past few months, and I’m going to have to work extra hard to put it back on two weeks from now.  Oh, antibiotic appetite, how I loathe you.

Tuesday, September 27, 2011

Adding a new blog . . . kinda

I haven't posted today because I have been quite busy moving some of my content from this blog onto a wordpress account.  I've been trying to compare blogger and wordpress for a few days now and I figured out that the best way to do so is by actually using both of them.  I also have wanted to create a public blog ever since starting this one but didn't know how to go about it.

I haven't shared this blog with friends and family because I don't want our conception journey to be public.  I do, however, want to raise awareness for CF and share my story with others.  Therefore, I decided my wordpress account would serve as a public blog. It will contain some of the same posts but will not include any details about TTC.  You are more than welcome to follow both of them, but anything that I post on wordpress will always be posted here also.  I just felt like if I didn't share it with you, I would be deceiving you somehow.

Should you choose, clicking here will allow you to access my wordpress blog.  Thank you for continuing to read about our journey and posting so many great comments! I truly appreciate it.

Monday, September 26, 2011

Advice for the younger CF generation


Advice for the younger CF generation

Although my blog is mostly adult content and will hardly ever fall upon the eyes of the younger CF generation, I was inspired by another blogger (CF Fatboy and his post which inspired me to write this) to impart advice I have learned and share my struggles of growing up with CF.  These are the things I wish someone had told me when I was younger (not that I would have listened).  None of this is to be taken as medical advice. Please consult your doctor before trying any new treatments or exercise program. I am NOT a medical specialist!

1.       You’re going to feel out of place.

This is true of everyone human being on Earth, even if it doesn’t appear to be the case.  At some point in your life, you will feel awkward and as if you don’t belong.  This just seems to happen more often if you have a chronic illness.  When it happens, try to remember all your great strengths and assets.  Remember that other people feel this way too and that thousands of other cysters and fibros have gone through similar feelings as well.  You are not alone.  If someone calls you out on why you do something different, think of it as an opportunity to raise awareness for CF.  I know this is easier said than done. I went through high school feeling left out and alone a lot of the time.  I shied away from my disease and never talked about it, but I regret that now.

2.       Compliance is Key – You are NOT Invincible.

This goes hand in hand with #1.  If you already feel out of place, then taking time to do breathing treatments is hardly going to make you feel more “normal.”  However, it is easier to feel normal by keeping up with treatments every day than ending up in the hospital multiple times a school year because you refused to do the treatments.  I experienced this first hand.  I skimmed through high school doing treatments here and there but never fully committing to them.  It didn’t matter, I had a mild case of CF and didn’t need to do the treatments.  Then, one February night, I found myself in the E.R. with MRSA, P.A., and bronchitis. My sats were in the 80s and I had an extremely high fever.  I didn’t get to go back to school for an entire month.  Instead, I spent my days in a hospital with a PICC line, trying to recover – try feeling normal after explaining that to your fellow classmates. 

3.       Every case of CF is different.

This is one that I am still trying to learn myself. Cystic Fibrosis is one of those diseases where everybody is affected differently by it. There are some things that are common place, but as far as infections, PICC lines, surgeries, and pregnancy go – everyone is very different.  When I was 17, just getting out of the hospital, I met my first fellow fibro.  He was 23 and had just undergone a double lung and heart transplant and we talked online all the time for months. Then suddenly, he wasn’t online as much anymore and I soon learned that he passed away.  This hit me hard – harder than I ever expected.  I was convinced that I also would pass away at the age of 23 (like he did) and that my CF was just like his case.  Well, as my 23rd year passed, I began to realize I didn’t have the ability to see the future.  I then started seeking out other cysters and fibros so that I could share my journey with someone yet again.  If you become part of the CF virtual family, you will unfortunately meet other cysters and fibros who pass away much earlier than they should.  You will lose some of your friends, but you will also gain a deeper love and understanding for others dealing with our disease.  You will also learn things that may downright shock you or encourage you to do everything you can to kick CF booty.  For example, it was through the CF community that I learned of Hal Soloff, who is now in his 80s and fighting CF every step of the way.  So stay encouraged, stay positive, and stay compliant.

4.       There is never enough time so live fully, laugh often, and love unconditionally.

This one has been drilled into my head more and more in recent weeks.  As stated in #2, you are not invincible.  You may live to be 102 or you may have a rogue piece of satellite come hurtling at you from the sky tomorrow – you NEVER know.  Having CF, I think we often get pulled into the mindset that we will die before our family and friends.  I don’t like getting into this mindset for a variety of reasons, but most of all it ends up creating a feeling that there will always be a tomorrow and that words/actions don’t hurt others.  I have recently (in the past few years) decided to live my life as if there is no tomorrow for any of us.  I’m not always successful, but I try really hard to abide by this philosophy. I don’t end conversations with a harsh word – EVER.  I always say I love you. I give way too many hugs/kisses to the people I love.  I thank everyone for all that they do on a regular basis.  I tell people how much I appreciate a kind word or action they have done. The list goes on – I think you get the point.  If something happens, I want those around me to know that I 100% loved them and appreciated them.  I never want that to be a doubt in their minds. Also, if something happens to someone I love, I want to know that the last thing we were able to say to each other was positive.  This is so important to me and it has made me a happier person.

5.       Listen to your doctors AND don’t stop exercising.

When I was younger, I believed I knew what was best for my body.  In some regards this is still true.  However, I am much more likely to listen to my CF doctors than ever before. If they want to me to increase my treatments or go on an antibiotic – I don’t fight them. I also don’t tell them I will do it and then never actually go through with it (ahhh my teenage years...how stupid of me).  I believe that CF care centers work very hard to provide us with the most accurate and up-to-date information they can. They are doing the best they can to keep us as healthy as possible for as long as possible.  I didn’t get the medical degree (though some days I feel like it) and therefore I listen to what they have to say.  If I disagree, I discuss it openly with them prior to leaving clinic and we reach a mutual understanding.  

Recently, their biggest push is for me to exercise.  Exercise has been cited again and again as one of the best ways to keep lung function up.  I loathe running and despise sweating, but I’m doing it for my health.  I’m not 100% compliant with this yet, but I’m working toward it.  My advice is to stay active your entire life.  Don’t let the early twenties slip you by as you head into college and lounge around in the dorms way too much.  If you never stop exercising, you won’t have the issue of trying to start it back up again and build up your tolerance. 
Our clock in our kitchen.  I love it - ties into my philosophy beautifully!


Well that’s it for now.  This blog has gotten way too long, but these are 5 (technically 6) things I firmly believe in. I wish these had been shared with me by a fellow cyster or fibro at a younger age.  Now the challenge goes out to all my fellow adult cysters and fibros out there: What advice would you impart on our younger generation?

Saturday, September 24, 2011

And here we go . . .

Wow what a morning. This is going to be REALLY short because I'm so weak right now, but...

I woke up this morning feeling above 100% I felt awesome and my chest congestion wasn't even bad!!

I had my monthly book club this morning and felt great until RIGHT when we were ready to leave.  All the sudden, I felt weak and shaky and lightheaded.  A few months ago I suffered from panic attacks and thought maybe it was one of those coming on, except the feeling never left.

I got home and came in, laid down and was feeling miserable (like I was run over by a truck).  I took my temp and it was 98.6 (I normally run about 97.5 during the day so it was a little high but normal).  Then, about ten minutes later I started shaking and got SOO cold.  I started coughing up green goo (out of nowhere...I'd been congested over the past two weeks but this morning I felt good), and so I took my temp again in about 20 minutes.  I was 99.5. 

My sugars have been REALLY high the last two days..much higher than normal for me even WITH insulin.  So, I was wondering if I was getting sick or maybe just needed more sleep...Well the 99.5 number was all I needed to page my doctor.  I'm reluctant to go on antibiotics, but I'm not stupid.  If it came on this quickly, it scares me.

By the time she got back to me (only 10 minutes from when I paged her) I was 100.5 and popping ibuprofen.  She just called in a two week run of Levaquin for me, but if I start feeling worse I get to head to the hospital...no fun.

So, while this post is SHORT and probably sporadic, I'm curious if other cysters and fibros EVER have it hit them this quickly.  Have you ever gone from feeling 100% to feeling just down right MISERABLE and with a sudden fever?

Friday, September 23, 2011

A book full of tears and thoughts

SPOILER warning: If you have never read The Time Traveler's Wife by Audrey Niffenegger or seen the movie and you plan to do so, please skip over this blog. It will contain spoilers from the story.

I never expected when I woke up this morning, that I would be blogging about a book.  A book that, until I was coerced by my book club, I had no intention of reading. However, as I sat on my couch, sobbing through the last 60 pages or so, I knew I needed to talk/write about it.

 

This book was difficult for me to read and fascinating at the same time. I felt a connection to the main character, Henry, because he also has a genetic disease which he has no control over. Granted, CF and time traveling are just a tad different, but regardless, he can't control what happens with his disease. I often feel like that's the case with CF as well.  We can try everything to get it right, but sometimes we still get sick and need IVs or extra treatments. Sadly, I have been reminded of this aspect of CF again and again with friends who have suddenly become ill.

Having that connection with the main character, I was drawn in pretty quickly to the book. So as the novel continued, I found myself struggling and relating to their journey with infertility/miscarriages. This section was incredibly difficult to read.  As Henry and Clare (the two main characters) make it through 6 miscarriages, I found myself wondering if I would have stopped at one.  These thoughts may also be due to recent circumstances in the CF community, but either way it made me think. Naively, I thought that this part was going to be the most emotional section, but I was wrong.  Definitely wrong.

As the book began nearing it's end, Henry has traveled into the future and has seen the date of his own death. He knows his death is coming, much sooner than he would like, and he begins to think about his life.  He think about his wife and the great moments they have had and also the sadness that has engulfed their lives at times. He thinks about his daughter and how 5 years with her is not enough...how he longs for more time with her.  Henry is suddenly forced into the mindset that I believe many people with chronic diseases face at one point or another: there is just simply not enough time.

I'm one of those cysters who firmly believes she will live a long time with this disease or that it will not be the disease that takes me out of this world. That being said, I have still thought about my life ending early. I have thought about saying my final goodbyes to friends and family...and to my dear husband and it tears me up to even imagine it.  So, when I read about Henry thanking his friends for their loyalty, support, and love, and when I read about his goodbye to Clare as she tries to comprehend what is happening, I bawled. I'm not talking about little tears here and there, I mean full-out sobbing. I have imagined this scenario enough that reading it seemed too real. 

A few pages further, Clare (Henry's wife) opens up a letter that Henry has written to her right before he passed away.  He talks about how he cherished each moment they had together and he would give anything to have more time. . . and as cysters and fibros, that's what we all desire more of..time.  We want more time in the day to do our treatments, exercise, eat a gazillion calories, and still live some sort of life. We want more time between PICC lines so that we can feel normal for a bit longer. We usually fully understand how precious life is and we desire more time with family and loved ones above all else...

So the book left me realizing that I have, in recent days, been consumed with the desire to get through the day and finally get to sleep (our days have been incredibly busy with very little besides work).  I have been missing the opportunity to live every moment to its fullest.  I have been neglecting holding my husband's hand just a little longer while we sit on the couch. I haven't kissed him as much as I want to and I haven't said I love you nearly enough.  All I desire is to have him home with me right now so I can hold him and never let him go.

CF or no CF, none of us can escape time.  All that should matter is the here and the now, and a lot of us (myself included) forget this way too often.

Wednesday, September 21, 2011

CFRD is . . .

CFRD is way too confusing!

Let me begin by saying that cystic fibrosis was never an adjustment for me because it is all I have ever known. I was diagnosed at birth and I've always popped pills, inhaled drugs, and been beaten on (so dramatic sounding, isn't it?) by a person or a machine. It's just my normal routine - nothing odd about it.

Cystic Fibrosis Related Diabetes (CFRD) is a whole other ball game.  It has been, by far, the biggest adjustment in my life.  I have gone from eating whatever I want, to (wrongly) carb restricting myself, to finally starting insulin all while my sugars bounced any which way they wanted. 

With the start of insulin, my sugars have been great 2 hours after meals (usually 130 or below).  However, come three hours after, my sugars will rise to 160 or higher.  It's like my body digests so slowly that the insulin doesn't last long enough to cover my food.  But then come the following morning, I will eat breakfast, be 160 two hours after and 60 three hours after.  Needless to say, it's been a confusing juggling act. 

With my sugars acting like this and trying to start a family, it's obvious I needed to get in to my endocrinologist.  She, however, is on maternity leave, which meant seeing another doctor for the day.  No problem, right? Sure, if I had a normal case of diabetes, but unfortunately, I don't. . . .

Let's start by saying that our drive up to University of Chicago was easy and beautiful. It was a crisp Autumn morning, traffic was light, and we even found a parking spot. I had high hopes that I would get some answers at this appointment today, given our streak of good luck this morning.

View from the parking garage at U of C


Sadly, that was not the case.  Instead, I spent the first half hour of my 45 minute appointment explaining CFRD and how I have to just adjust for whatever I eat.  There's no 2000 calorie diet here and milkshakes are good for me.  I then proceeded to explain how CF effects digestion and the liver as these were both questions she had.  I understand that not every endocrinologist is a specialist in CFRD but it doesn't help your confidence level as a patient when you are explaining your disease to your doctor.

I'm actually used to this, as I'm sure other cysters and fibros are as well.  When you head into an emergency room or see a general practitioner, you become a teacher and the doctor becomes the student.  It's not done by choice, but it has saved my butt more than a few times. With this disease, you have to be your own advocate. That's for sure.

Anyway, after explaining all of this to her, she says, "I'm just not really sure what to do here." And I stare at her, like a deer in headlights.  A million thoughts are going through my head and most of them are similar to, "But you're a DOCTOR! I need your ADVICE!!"  She then proceeds to tell me that I'm on such little insulin she doesn't want to tweak it too much and while she thinks I may benefit from a long-lasting insulin, I also have lows so she doesn't necessarily want to put me on that. She then says, "I mean, I don't need your doctor coming back and I messed up her patient."

Again, more staring on my part.  I wish I could have offered some brilliant suggestions to her here, but I am so confused with my sugars that I have no idea what to even suggest.  So we just kind looked at each other, nodding heads, unsure of what to do in the awkward silence. 

She then adjusts her papers and goes, "Well let's get an A1C and go from there. I'll call you in a week or so with a plan."

Ok...well that was a waste of 6 hours, 10 dollars in parking, 5 dollars in gas, and a copay. I still have no idea what to do with my insulin and I feel stressed that I'm not able to get help with it either.  I'm sure glad I kept my appointment with my regular doctor in October...hopefully she'll be able to guide me in the right direction.

Tuesday, September 20, 2011

We'll see what happens . . .

We'll see what happens, but I formally applied for a part-time job yesterday.

About a year ago, my handsome husband and I decided to try and make it work without me working.  We were doing fine (and really we still are) and it was keeping me home and away from the germs.  I was, in the mean time, trying to sub occasionally to bring in additional money.  I also was looking for work-from-home jobs, with no luck. 

While we are still doing just fine, we have found ourselves nervous about the new eduation bill that has gone through in our state.  Because of this, it is much more likely that my hubby (who just got tenured last year) will lose his job in any given year if student improvement is not high enough.  This created a problem for us as we were banking on the invicibility that tenure provided (not that he was slacking on his teaching performance, don't get me wrong - he's a perfectionist).

So we started looking at the expenses and at our savings account and we realized that we do not have nearly enough money to get us by for 6 months if he ever loses his job.  We would be fine if it wasn't for the CF part of our lives, but with the insurance we would have to buy and the increased medical costs associated with a different insurance, we would be in trouble. 

That being said, I have been actively looking for jobs over the past two weeks and actually found one worth applying for yesterday. It's a part time, 20 hour a week position.  This would allow me to be at home with my husband and still maintain my current, rigorous treatement schedule. The job is also doing clerical work, which means that it won't be too intensive and I shouldn't be exposed to too many germs.  It's worth a try, right?

So, I'm hoping to get a call back for an interview, but until then I'll just keep subbing my way along and trying to bring in whatever little cash I can.  It's days like this when I feel like CF is keeping me from contributing as fully to this marriage as a normal person would, and that saddens me.  Granted, we chose to keep me from full-time work to keep me as healthy as possible for as long as possible.

Sunday, September 18, 2011

Out of my "funk". . .

Happy Sunday everyone!

I have finally managed to get out of my "funk" of the last two days and move on to happier feelings.  The weather around me is dreary, chilly, and wet.  It's definitely more of a stay inside and cuddle day and that's perfectly fine with me. 

This morning, I woke up with the cleaning bug attached to me.  I immediately began cleaning the bathrooms and am going to move onto the kitchen after finishing my first treatment of the day.  I love when I get the desire to clean like a madwoman.  The house looks beautiful and smells so fresh when I'm done and this satisfies me to no end.  I'm even hoping to convince my husband to help me move the fall decorations out of storage today so I can begin putting them up throughout the week. 

Obviously, you can probably tell I'm starting to feel better.  My cold has moved to my chest but with the help of hypersal, I'm starting to move the junk out of my chest.  I'm still congested in my upper airways, but not enough to warrant an antibiotic.  I think I'm slowly managing to kick this bug on my own, but if I start feeling worse again, I won't hesitate to go on cipro or levaquin.

With that said, I'm in the mood to cook a hearty dinner tonight and something pumpkin early this coming week. I'm leaning toward the Libby pumpkin roll (a standard of mine, come fall).  I love the cream cheese center, and since I'm taking insulin I will be able to enjoy a decent amount of it this year. 
I also like to make a few of them at a time and give them out to people. I love giving and I wish I had an endless supply of money and food to give away. 

On that note, hubby and I have started playing the lotto.  I know, I know, the odds are beyond against us and it's a big waste of money, but it gives us a little minute of excitement to look forward to as we scratch off the cards or wait for the numbers to be drawn.  We are only doing a dollar here and there.  Overall, we're enjoying it and it's better than the numerous other vices we could be doing!!

Wish us luck!! :-)

I am continuing to keep all my cysters and fibros who are ill and having a hard time in my prayers. I'm also asking everyone to continue to keep Nicole in your prayers as she is now needing to get off the ventilator and breathe on her own.  The baby is doing fine and will be delievered at 32 weeks as long as everything remains fine.  Please continue to pray for her as she needs as many good thoughts and positive, healing vibes as possible.

Friday, September 16, 2011

An Emotional Rollercoaster Kind of Day


Today has been an emotional rollercoaster for me, and I’m not 100% sure why.  I just know that I’m finding myself quite sad this evening.  I have a couple theories as to why:

1)      I’ve been praying for a large number of people later.  Normally prayer does not make me said, and it’s not the actual act of praying that has made me said, but the reason I’ve had to say the prayers. It seems like there are so many people that are sick, struggling, in danger, or having troubles and are in need of prayer right now. It just seems like an overwhelming amount compared to my usual prayer list.  This in turn makes me feel sad and guilty.  It’s very hard for me to know people are having troubles and there is nothing I can personally do, except for praying for them.

2)      The weather today was dreary and cold. There was not a single ray of sunshine that touched my skin today and the chill in the air had me in a jacket and gloves this morning.  Normally, I enjoy the cold and the greyness of the air doesn’t bother me, but today it just seemed sad outside. I felt like the weight of the world resided in the sky today and like I would never see sunshine again.

3)      My mother and I went baby shopping today for family and a family friend who are both due at the end of the year.  Again, this normally doesn’t bother me and I actually had fun while I was partaking in the shopping, but at the same time, it’s just another reminder that we are not pregnant yet.

4)      My hormones are all over the place.  I’m angry, sad, happy, in tears, and laughing within a 5 minute span of time. I don’t know what’s going on with them.  I’m also exhausted from this illness still and I’m concerned about the severe pain in my left breast.  It’s a pain I’ve never felt before and it hasn’t let up in 24 hours now.  I’m hoping it’s just a really bad case of PMS, but if it’s not gone by early next week I think I’m going to make an appointment to get it checked out.

So, I’m guessing that my sadness is tied to a combination of all the above factors.  I’m hoping that some extra sleep and a nice big breakfast tomorrow will help me get back out of this funk.  I honestly hate feeling sad and I hate relishing in self-pity which I find myself doing a lot tonight. 

Thursday, September 15, 2011

Autumn is . . .

Autumn is. . . my favorite season – hands down.  My heart warms as summer starts fading into fall, and the air turns crisper and cooler.  I love the way the trees start to tease us with their hints of color and I love being able to deeply inhale the scents that are associated with a crisp autumn breeze: the rustic smell of leaves and tree bark, the warm smell of cinnamon, nutmeg, and freshly baked bread, and the smell of outdoor festivals which have their own unique but wondrous scent. 

This fall seemed to be coming a bit more slowly than in previous years, as summer seemed to cling onto the branches for eternity, but upon waking this morning I knew that fall was here and summer had ended.  We may get one or two more warm days, but the majority of days will be clean, cool, and sunny.  Even the rainy days seem magical to me at this time of year. Autumn is also the season of change for me.  Obviously, the biggest change is the color of the leaves prior to their fall, but I also change as well.  I tend to slow down and become more appreciative of every part of my life.  I focus more on family and warm, home-cooked meals.  My home turns into a festive abode, complete with the scents and tastes of the season.  I also bunker down with books and some sort of craft/activity this time of year. 

This year, my activity is improving my writing skills which have drastically dwindled over the past years.  My current book is The Time Traveler’s Wife (please don’t ruin it for me as I have yet to finish it or see the movie).  My desire right now is to decorate for fall.  My taste right now is for warm bread with a nice, hearty casserole.  My favorite scent of the moment is “Autumn Leaves” from Yankee Candle.  My favorite part of my day is relaxing on the sofa with my husband, reflecting on the blessings the Lord has provided for us.  Yes, it’s fair to say that I love fall and all the aspects of my life that change each year as the season begins.

I find myself wondering that perhaps this fall is also a time for change in regards to our family.  Maybe this will be the season that welcomes a positive pregnancy test and all the happiness, fear, and concern that goes along with it.  Or maybe this season will just be a time for us to be thankful for what we have and build our relationship even more as man and wife.  Whichever way it ends up turning out, this season is a blessing from God and I intend to enjoy every moment of it, confident that His plan will work just as it’s supposed to.

Is this your favorite season? If so, why?
One of the last "green" pictures of our tree line during our 1.5 mile walk.  I'll be sure to include the changing colors throughout September and October.


Tuesday, September 13, 2011

Enjoying the little things


Deciding my husband and I were ready to start a family was easily the hardest, biggest, and most exciting decision we have ever made.  It was a decision that took quite a long time to happen, and I am proud to say that we have considered almost every facet that goes into such a life-changing decision.  Even now, while actively TTC, we wonder if we’ll be able to handle it and we pray a lot for guidance in this process.  Still, we (me more so than my hubby) find it impossible to contain our excitement about our recent choice.

All this excitement has led to me obsessing over a baby and pregnancy.  I see baby clothes in the store and I’m reminding myself that I’m not pregnant yet so it’s not feasible to be buying clothes at this point.  I have, however, pretty much picked out the crib, highchair, rocking chair, swing, and changing table I want already.  I also spend time noticing which toys my niece and nephew play with and which ones aren’t as “cool” to them.  I look at baby books and get a fluttering in my stomach as I imagine reading to our little one from day one.  Passing by the (future nursery) spare bedroom, I imagine Winnie the Pooh scattered throughout the room while the furniture and simple lighting create a perfect ambiance.  I have spent hours coming up with future activities my child and I can do while daddy is at work.  I know to most people this all sounds crazy.  Even I can admit it’s a little too obsessive, but it’s so hard to let it go  of this excitement and possibility that awaits me every month. 

Reading the above paragraph, it probably won’t come as a surprise that I have wanted to be a mommy for as long as I can remember.  As a five-year-old, I would tell you I wanted to be a mommy and a teacher; That goal still has not changed.  I’ve dreamed about it for years.  I’ve dreamed about what my baby will look like, talk like, and smell like. I’ve dreamed about his/her personality and the little things that irritate me and melt my heart.  I’ve fantasized about what my child will be when he or she grows up: a teacher, a firefighter, a doctor, the one who cures CF…oh the dreams I’ve dreamed for my unborn baby.

However, with this much desire and excitement about our decision to try for a family, I think I’ve forgotten to take time to relax.  I realized just this evening that I desire a pregnancy so much and focus on it so deeply, that I’m forgetting to enjoy the “now.”  My sweet husband and I were eating dinner on the floor of our living room, watching a movie, and enjoying the peace and quiet tonight.  I realize that these moments will be entirely limited once we have a baby, and sadly I'm taking them for granted right now.

This got me thinking: what else am I taking for granted?  Here’s just a few things: ALONE time together as a couple, my personal time alone, walks with just me and the dog, watching all adult-themed television, leaving to go somewhere spur of the moment, just eating whatever for dinner some nights, cuddle time with no distractions, my time to silently read a book, my excursions to the library, my simple time with family and friends, not worrying about anyone but me and the hubby, being able to sleep as much as I need when I’m sick, not saying “no” every minute (J), sleeping in on weekends, and the list could go on. 
Please don’t get me wrong, I will trade all of the abundant time I have for the above activities in order to have a family. I’m just saying, I’m focusing so much on getting pregnant, that I’m not taking time to enjoy the simplicity of our life right now, and I think that’s terrible. So I’m vowing to spend more time enjoying these little things while we still have time for them, regardless of how frustrating or chaotic our conception journey will be. I really need to learn to check some of this baby obsession at the front door.

This tree was part of my inspiration for this blog. I was enamored by it's beauty on my walk this afternoon and have thought about how I have been passing small little treasures like this since my obsession has started.

Monday, September 12, 2011

Health Class Deceived Me!!

I don't know about other women out there TTC, but health class sure deceived me. When I finished that class my sophomore year, I was certain that not using birth control of some form automatically equated to a pregnancy.

We were told how dangerous intercourse was and all of the possible diseases we would get if we weren't careful. We were told of painful labor was and we were forced to watch a birthing video where the woman was screaming her head off. We read numerous stories about the thousands of woman who had unplanned pregnancies when they were 16 or while they were on drugs or dealing with alcoholism and how they wished they could change things. 

Now I understand the scare tactic and I agree that teenagers need to be informed (and often times scared) about the potential dangers/realities of intercourse. I do think, however, that I left that class thinking getting pregnant was easy, and now I feel like I was lied to.

Having CF, I knew it was going to be more difficult for me, but I still don't know if I really understood the emotional rollercoaster my hubby and I have now gotten into.  I feel quite guilty when I look at a 16 year old girl with a newborn baby and I get upset that I can't get pregnant easily. I know that many many many women, even without CF, go through struggles with getting pregnant. I have nothing to complain about, but just find it irritating that at 16, health class made it out to be the easiest thing in the world.

I'm now on cycle day 32 with no symptoms of either AF or pregnancy. My temps still haven't risen which means I have no idea when to expect my AF. I will be happy when a new cycle starts and I can start charting day one of the cycle and we can try again. 

I've realized this blog is 100% a vent-fest. I'm not sure if this is just me talking or if it is also influenced by the cold-turned-cough I'm now going through.  Regardless, I feel better after finishing it :)

Sunday, September 11, 2011

Prayers Needed

I found out this morning (from a fellow cyster on facebook) that two of our cysters are in desperate need of our prayers and good thoughts.

The first cyster who needs our prayers is Nicole Frame (I have been following her blog and she is one of my members also).  She is 23 weeks pregnant and in the ICU.  She developed hemoptysis (coughing up blood) which doctors were unable to control until today (from what I can gather).  She's fighting extremely hard and needs our prayers and thoughts to help pull through.

The second cyster in need of our prayers is Carla Stamp.  I do not know her, but found out about her through a facebook contact.  She is recently married and fighting lung infections and now pneumonia.  She is also in the ICU and needs our continued thoughts and prayers.

It's scary when fellow cysters and fibros become very ill.  It reminds us how unpredictable this disease can be and how valuable life is.  Please, as you take your moment of silence or say your prayers at night, keep them in your thoughts. 

Saturday, September 10, 2011

Gaining Weight. . .

Gaining Weight . . . slowly but surely!

For the first time that I can ever remember, I am weathering a sickness without losing weight!!!

Honestly, this is a huge success for me!! Every sickness I have had has been accompanied by a decent amount of weight loss, but not this time around!

In fact, last night as I jumped on the scale before my shower, I clocked in at 115.0 which is awesome because fully clothed I don't even normally clock in at that. I weighed myself after putting on PJs and I went up to 116.8!!!!  Sorry for all the exclamation marks but this is huge!

I went through one spurt of growth in college where my weight got up to around 120 but then dropped it quickly after realizing I was diabetic which led me to restrict carbs to stay off insulin.  Other than that, my weight has been an issue since the day I was born. 

I remember being in high school, 5'4" and weighing in at 97 pounds.  Now, in high school I was so concerned about my body image that I didn't tremendously worry about this weight. Even so, I was eating everything under the sun, just not putting on the weight. Now, if I drop below 105, I'm freaking out.  It's funny how perspective changes as you get older. 

So now, my height hasn't changed but my desire to gain (and keep) weight surely has. When we got back from our Disney vacation at the end of July, I was about 107 which was partly due to water loss while we were down there.  So from the beginning of August until the beginning of September, with the help of insulin and milkshakes, I have managed to put on about 8 pounds.  I'm beyond ecstatic!!

So today, as I head off with my family to an outdoor end-of-summer, beginning-of-fall festival, I will enjoy eating a deep-fried twinkie or deep-fried snickers bar to celebrate my gains :) I mean, it's only appropriate, after all! :)

Thursday, September 8, 2011

To Marry a CFer. . .



To marry a CFer. . . you have to be a really special person.  
I would be interested to see a study done on the divorce rates of CFer’s and their spouses.  I may be wrong, but I have a feeling they would be lower than the national average.  Why? Because to marry a CFer, you have to really really be in love with that person.  Because by the time you reach marriage, you have probably gone through some really rough times.  Because you go into marriage both realizing how precious life and love actually is and you are determined to make the most out of your time together.  Because who did or didn’t forget to take the trash out last night is hardly as important as the other million things going on in life for a CFer and his/her spouse.  The list could go on and on, but I think you catch my drift.

My husband is amazing.  Plain and simple – amazing.  Again, to marry a CFer, you pretty much have to be amazing.  I’m not saying that we are a horrible choice (on the contrary, we usually appreciate life in ways many others can’t fathom), but we certainly come with a lot of “baggage.” 

By the time my husband and I were married, we had been through one hospitalization and two surgeries.  He was by my side with my (2nd) PICC line, and he was there when my diabetes diagnosis came through.  This all happened prior to exchanging vows.  In addition, he was used to me coughing up green phlegm at all hours of the day, having to routinely ditch out on activities because I was sick, and he lived with my flatulence and bowel movements, which as other CFers can attest, is NOT an easy task.  We talked about my life expectancy in depth, we talked about the financial strain CF will put on us in depth, and we talked about the expected hospitalizations that occur when you have CF.  Not only did he still propose and walk down the aisle, but he jumped in with both feet. 

After our marriage, he dealt with my first instance of hemoptysis, which was absolutely terrifying, but he handled it all in stride.  He also has been the rock beneath my feet when it comes to my treatments.  He is the reason I am compliant with them and despite his busy schedule, he makes sure I’m doing everything right to take care of myself.  Even when I’m exhausted, he’ll push me to do a treatment because he knows it’s best for me, and he takes my yelling and pouting in stride.  I must say, some days I am NOT the best wife, but he treats me like I am an angel. 

This year, we made the decision to have me stay at home to help keep my risk of infection down.  Since we are trying to conceive, it seemed like a logical choice.  I will continue to sub when asked but I won’t hold a full-time job.  So, all the pressure to provide for us comes on him and when you are a one-income family living off of a teacher’s salary, it makes it a little difficult.  Again, he handles it beautifully.  It just blows me away how wonderful of a person God gave me to spend the rest of my life with – I am truly blessed.

So then, back to my divorce comment:  I believe that by the time many CFer’s spouses actually walk down the aisle, they have dealt with some of the hardest things a marriage can have thrown at it.  Typically, they have dealt with illness, surgeries, weeks to months of IV antibiotics, and financial strain or at least a realization of the financial burden, and yet they still vow to be by the person’s side through sickness and health.  That’s a big statement for a CFer spouse, but they already know what they’re getting into before the vows. 

So, while some marriages break apart when finances are rough, or an illness causes one spouse to be less capable than before, or because of petty bickering, I think often a CF marriage pulls through with flying colors.  When you marry a CFer, you learn to value life a little bit more than the average person and petty things don’t tend to matter quite as much. 

I think all the spouses of cysters and fibros should be given a pat on the back and a giant thank you.  It’s not an easy life but it’s a wonderful one and I’m just grateful I have someone walking by my side, holding my hand for the entire ride.

Wednesday, September 7, 2011

Colds are . . .


Colds are. . . NO FUN!

Yesterday evening, I noticed that my throat was getting progressively sore and that my nose seemed slightly stuffy. I drank warm tea, did an extra sinus rinse, and did an extra treatment, hoping it would help me feel better when I woke up this morning.  Sadly, I felt worse. 

I honestly hate colds. To be fair, I don’t know anyone who likes them in the slightest, so at least I’m in good company.  I hate losing my taste for food which in turn means I lose my appetite.  I can’t stand not being able to breathe through my nose as soon as I lie down, which means I lose sleep.  I also hate not being able to hug or kiss my hubby whenever one of us is sick.

We have a rule in our house, and it’s a no-fun but necessary rule: No physical contact when one of us is sick.  We will occasionally still hug each other but definitely no kissing or sharing foods.  He’s a teacher which means he brings home a lot of disgusting germs from the kids and I don’t need to get them.  Unfortunately, this one hijacked me anyway.  Luckily, his cold is gone now (it only lasted three days) but mine is just beginning.  I will probably have it for another week or two, but I’m hoping it’s much shorter than that.

Usually, my colds follow a pretty similar pattern each time: Day 1: feeling tired and sore throat.  Day 2-5: Worsened sore throat, can’t breathe through nose, increased cough, disgusting mucous production with cough, and constant runny nose. Day 6-10: Some relief from the above symptoms but inability to hear well or taste anything.  Then, it starts getting better. 

Needless to say, this puts a halt to TTC, at least for now.  Realistically, I should already have ovulated, but as posted earlier, my temps don’t reflect that.  I actually am ok with a BFN this month since I have come down with a cold and my sugars aren’t quite where I want them this month.  I did make an appointment with a different endocrinologist at U of C.  I think that’s the right call (Thanks to my beautiful sister who convinced me to see someone in the meantime). 

So to all my cysters and fibros out there: Stay healthy!!!! All these bugs are going around like wildfire.  Kids are already out of school sick and the teachers have it too!  Germ-x is your best friend as well as additional treatments and a great deal of additional rest. 

As for me, I’m hoping to kick this cold to the curb. I’m hoping that it doesn’t turn into anything that needs antibiotics, but if it does, it does! In the meantime, I’ll be taking my own above advice and also eating a lot of soup and drinking warm tea.  I took a Benadryl tonight which will hopefully help me sleep!
Happy Thursday all! :)

Tuesday, September 6, 2011

Exercise is . . .


Exercise is . . .HARD!!

I’ll be honest, I was one of the last kids to complete the mile in high school.  I walked when I could and only ran when forced. I came up with every excuse possible to get out of even changing for gym, let alone participating. If you would have told me that years later, I’d be running by my own choice, I would have laughed at you.

Well, here I am, years later and trying to run.  I believe that, as unpredictable as CF is, we do have some control over the disease.  I’m not saying that if you are 100% compliant with treatments and you exercise everyday, you will live to be 110, but I surely don’t think compliance and treatments can do any harm. In fact, I think it is one of the few ways we do have some control over our disease.  Exercise, as much as I hate doing it, makes me feel better.

I started exercising a few months ago, using my iPhone and the app, Couch to 5k. I am enjoying using the app, even if I can’t complete the rigorous course it provides in only 9 weeks. Unfortunately, I fell behind after getting sick and gave up on it altogether.  It’s hard for me to find motivation to keep doing it because I truly hate it that much.  Now, however, the idea of a potential pregnancy has me working at it harder than ever.  If there are any ways I have control over my PFTs and how my lungs feel, exercise and treatments are it.  I would love to see my PFTs increase prior to becoming pregnant and I will work my tush off to make sure they stayed high.  So, I’m jogging/powerwalking (continuing the Couch to 5K app) and this time I’m doing it with my best friend which means it keeps me on track and helps me not to focus on how hard it is to breathe or how much my legs are burning.

It’s still difficult though and I still despise actually running.  I’m looking forward to the day where I wake up everyday wanting to run – I just don’t know if it will ever happen.  However, after today’s 1.5 mile walk/jog in thirty minutes, I felt GREAT.  My lungs felt so much larger and I coughed and coughed and coughed for hours afterwards.  I didn’t get anything up but I sure got it moving around and I’m ok with that (although, I prefer the former, obviously). 



I am SO proud of this screen right now!


So, here’s to my new workout program and hoping that I can stick with this one. I want to walk into my CF clinic next month and have my FEV1 higher!!  If it’s not higher next month, then in three months hopefully it will be where I want it. No matter what, exercise isn’t doing me any harm so I will keep at it as hard as I can!!

Monday, September 5, 2011

My biggest pregnancy concern...

The title is a little misleading because I have a LOT of big pregnancy concerns.  Obviously, above all I want my baby to be healthy and there's a lot of concerns that go into this desire.

I obviously worry about my lungs and potential infections, but even more so right now is my diabetes. I'm worried about my sugars being too high/low for the baby and causing it harm.  I recently started the insulin so I'm still getting it slightly under control. I've started off only taking 3-4 units with a meal and eating really high-calorie meals since weight is such a problem for me. The problem is, with the insulin my sugars stay elevated for a few hours after dinner. So, I'm not sure what my endocrinologist will say about this. I don't see her until October now since she is on maternity leave. She had given us her blessing before having the baby but I feel like I'm missing a piece of my support system without seeing her recently.

Not sure if I should go see a different endocrin. in the mean time or just wait for her to get back...hmmm

Sunday, September 4, 2011

Labor Day Weekend, Nausea, and Crazy Temps

Happy Sunday everyone!

I hope everyone is enjoying their three day holiday weekend! The hubby and I had a wonderful time up at Lake Geneva with our family, even though it was a very short trip.  I didn't, however, think we were going to ever make it up there between packing, loading the car, and the unfortunate incident about an hour into our trip.

When we pack for trips, my hubby always makes me go through a mental checklist as to ensure we have everything.  So I went through my checklist, four times in my head, confident I had everything we needed.  So we scurried out the door, put on some favorite tunes, and started singing loudly as we made our way to Lake Geneva. After making two wrong turns (courtesy of my poor directing skills and unfocused brain) we were finally headed in the right direction - still singing away and happy until . . . I realized I left my nebulizers at home.

Had I left a medication or an article of clothing or toiletries, we could always pick those up.  Instead, I leave one of the only things we can NOT get anywhere else.  So, an hour into our drive, we had to turn around and grab the nebulizers from the house. It wasn't terrible, but it meant missing dinner with our family which made us upset.

Other than that drama, the weekend was great and I even purchased some yummy caramel corn with pecans.

  Mmmm!!

Now onto pregnancy related things. My doctor made a strict deal with me. She was fine with our TTC as long as I gained 5 pounds. I am 4 pounds of the way there, thanks to the addition of insulin, which I did NOT want to start but realized I would have to use with a baby anyway so it seemed silly to put it off any longer. Up until this point, I had been managing my sugars with diet and keeping my A1C at 6.0 or around there which is great, except I wasn't putting on any weight. So now, in two months time I am up almost five pounds and enjoying foods like caramel corn and milkshakes, which I haven't enjoyed in a couple years.  Well, last night I had a scare with my new insulin program.

I took my insulin, prepared to sit down and have an awesome meal (Mac and cheese with a caramel apple..yes I love caramel).  All was good until I smelled the food and then felt like I couldn't take a bite or I would upchuck it everywhere! I ate slowly, feeling sick with every bite but I managed to get it down. It did, however, make me nervous about morning sickness with insulin. If I can't eat, or I throw up, then my sugars are going to bottom out. Definitely a question for my endocrinologist at my next appointment.

So, I was nervous but the nausea stayed at bay until today at lunch time. We got home and when I walked into the house, a certain smell triggered a wave of nausea again. My dear hubby thinks I'm crazy because he has a cold and can't smell anything. Well, it passed and we sat down to eat another big meal (more insulin) and sure enough, I thought it was all going to come up again.  Then, as soon as I smelled dinner tonight, I thought so again.

Now despite the fact that it's way too early for nausea, I was getting myself excited thinking it could be a pregnancy!! However, my BBTs (Basal Body Temps) haven't even indicated that I've ovulated yet this cycle. I had one day of higher temps and then it fell right back down to around 96.8 and has been hovering there for the last few days. So as much as I want to get my hopes up, it seems like it's just a stomach flu of some kind.

I'm thinking it's going to be awhile until I get my dear AF also because my BBTs are so low, even though I'm on day 28 of my cycle. It's irritating because now I don't know when I will be "late" or when to expect anything. This charting thing is harder than it sounds, that's for sure.  I guess the only thing to do is keep trying all the way until my temp spikes and hope this nausea goes away very soon because it sure is disrupting my days!

Friday, September 2, 2011

A simple 2 day vacation??


Before I begin the arduous task of packing for a two day vacation, I figured I would take the time to write out what a mini vacation details for us CFers. 

In my opinion, I would much rather take a long vacation than a short vacation because of the amount of time which goes into packing for either.  With CF, a small weekend getaway doesn’t mean that we can throw our clothes into a bag, bring toothbrush/toothpaste, and deodorant and be on the road.  Instead, it means we need to get our vest (airway clearance machine) packed up in its own roll along case, our nebulizer machine, our nebulizers sterilized and in plastic bags for transport, our medications (always bring more than two days worth..just in case) packed in a bag, which means about 6 or more different pill bottles, our flutter device packed to go, our nasal rinse packed to go, and a backup inhaler.  Oh, and I almost forgot the least-favorite part.  At the last minute (I HATE last minute..too afraid I will forget it), we have to pack our refrigerated medicines in a cooling case for the duration of the trip.  In addition, I also have to bring a baby bottle sterilizer so that my nebulizers can be sterilized every day while I’m away.  All this for a two day trip. 

As you can imagine, I prefer lengthy vacations because I need to pack the exact same items, just in larger quantities, and then packing all of it up seems worth it.  For a weekend getaway, it seems crazy.  Plus, even with family, I always get the comments such as, “WOW! You packed for a month!” or something similar. When we look at our luggage, over half of it is always medications and CF related items.  


Here it is - two days worth of packing.  Even the suitcaseto the far left is half-filled with medications. Needless to say, it takes awhile to pack.

Since I have so much cleaning and packing to do today, I figured I would splurge and drink coffee.  I’ve been trying to give it up since we’re trying to get pregnant, but today I definitely needed a caffeine boost.  Back to no coffee tomorrow J 

I hope everyone has a safe and wonderful labor day weekend!! I’ll probably post when I get back!

Thursday, September 1, 2011

Questioning...

Thoughts and Questions that keep running through my mind:

Will I be a good mommy?
What if we can't get pregnant?
Is my lung function ok to handle a pregnancy?
I know it will be hard to fit in all my treatments and a crying baby....
Am I throwing too much responsibility toward my husband when I get sick and he has to take care of both of us?
What if we can't get pregnant?
What if the baby has CF?
What if I take another few months to get healthier and then start trying?
What if we can't get pregnant?

My darling hubby and I have addressed these concerns and we are still wanting to start trying now..but the questions still run through my mind...