Archive | September 2011

A quote for Friday

Vineyard in Napa Valley

Image via Wikipedia

“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!

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5 ways cystic fibrosis has positively impacted my life

Smile! Welcome Back =]
Image by blentley via Flickr

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.

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.

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 firsthand.  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 commonplace, 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 23rdyear 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 mea happier person.
5.      Listen to your doctors AND don’t stopexercising.
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 stupidof 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 getthe 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’mworking 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 fellowc yster or fibro at a younger age.  Nowthe challenge goes out to all my fellow adult cysters and fibros out there:What advice would you impart on our younger generation?

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?

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.

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, 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.