Tuesday, January 31, 2012

"Wow! When are you Due?" And other hurtful judgments

I am the kind of person who hates to judge others.  There are a few times where I, against my own desire, find myself coming up with preconceptions for certain people I see on the streets, but I always try to come back to the fact that I do not know their story, and I have not walked even a foot in their shoes.  I have no right to judge anyone.

This has been bothering me recently.  I think that judging others is a condition of our society despite the fact that it’s not nice, fair, or religiously acceptable.  Regardless, I think we all need to work hard at not judging those around us.  Due to my CF, I think I work extra hard at not judging others, because I know what it means to be judged.

Here are the judgments that have been made about me by various people.  These were just the people that were audacious enough to publicly share their judgments:

1)      You don’t look like you have CF.

There are so many reasons I have trouble with this one.  What does it mean to look like you have CF? It is quite rare that I run into a CFer who wears oxygen all the time, can’t walk on their own, or has “I have CF” tattooed on their forehead.  In fact, my fellow cysters and fibros look VERY normal.  You wouldn’t be able to discern us from the general population, unless we got into a coughing fit.  We might be tinier than those around us, but that’s not even true for all CF patients. Those who are pancreatic sufficient do not struggle with gaining weight much.  That said, please don’t say I don’t look like I have CF.  I often want to say, “You look like you have a brain, but I guess first impressions aren’t always correct.” I never do, but I’ve thought about it.

2)      You don’t look/act sick.

Very similar to the first one, but said to me equally as often, if not more so.  No, I do not look sick, but I work really hard at not looking “sick.”  There are days when my breathing is very tight, where I have to do 4 breathing treatments to feel better, where I have to force myself to eat over 3,000 calories despite the fact that I feel nauseous.  There are times when I’m suffering from intense abdominal pain because I failed to take enough enzymes to digest my food.  There are times when I’ve gotten only a few hours of sleep because I’ve been up half the night coughing.  I may not look “sick,” but I work my butt off to keep it that way.  I also know that many of my fellow CFers don’t look or act sick either.  If we’re suffering from a lung infection or on IV antibiotics, we might look sick.  Otherwise, we look healthy but most don’t see the work that goes into that.

3)      Wow! When are you due?

Suffering from infertility, this is my least favorite.  It amazes me that people still ask pure strangers when their due date is.  While gaining weight, my CF belly has become quite obvious.  While my belly has grown, my legs and arms have stayed stick thin. On a normal day, you could say I look like I’m in my first trimester.  On a bad day, I look a good 5 months pregnant, no joke.  My CF belly bloats like crazy, and I get a belly that no shirt can fully hide.  While I understand why people ask me this, I still don’t think it’s polite.  Again, don’t assume someone is pregnant just because they have a protruding belly – it’s not always the case.  While many pregnant women can’t wait to be asked for their due date, I hate having to answer that I’m not pregnant at all.  I often brush this one off by saying, “I wish I was, but nope – not yet!” Usually the person who asked feels embarrassed, and I feel embarrassed. Overall, it’s just NOT a good question to ask. 

These three judgments are ones that personally affect me because of my CF.  Having had a mother with MS, I have seen others pass judgment on her as well.  The theme of this post is that you can’t possibly know what someone goes through on a daily basis, so stop and rethink the labels you put on people before you know them.  Labels hurt – think before you speak.

Monday, January 30, 2012

Spring, are you really here?? And a few infertility concerns...

Ok, obviously I KNOW spring isn't here, but it sure feels like it today!! It's supposed to be low 50s outside today, when we normally are averaging 20s for highs this time of year. I must say that this year has been the strangest winter weather I have ever experienced.  I'm enjoying the nice warmth that we are getting, but it is a little unsettling since this is so odd for us.

That said, on to my real reason for the post...

IVF will be starting in two cycles now.  It was supposed to start next cycle (right around the end of Feb.), but David can not take off for the last blood test he needs.  They want to do the complete test for CF (where they check for every single known mutation).  I understand why they want to since we will be doing IVF, but he needs to take the day off in order to have the test done.  Then, the test needs to be analyzed and then a letter of recommendation can be written for us to start the IVF process. I have an appointment on the 9th of February, and I was hoping he could come with me for that appointment.  He's a teacher though, so he can't take off.  His first day off is Feb. 20, and my cycle is due to start on the 22-24. I don't think that's QUITE enough time to get the test results and the letter. ;)

At first, I was quite sad about this.  I really wanted to start this coming cycle, but I realized that I have waited quite some time already so one more month won't make a difference at all. David was worried about how upset I'd be, as he knows I've been ready to get everything started. I explained to him that I realize he has obligations and can't take off whenever he needs to.  Especially with us doing IVF, he's having to be quite selective about taking days off because there will be quite a few days he'll need to take off once the process gets started.

With all of that said, I'm starting to get VERY nervous about IVF.  I think now that my liver doctor has given me the approval (pending the results of testing on 2/9), I am starting to realize how fast it is all happening. I started (foolishly) reading all of the risks of IVF last night, and I wound up feeling like a basket-case at the end of the night.  So why am I so afraid?

I will start this process by going on birth control to regulate my cycle and match it up to the lab's schedule (no worries here as I had been on birth control for over 10 years to regulate my cycles).

From there, I will receive an ultrasound to check my ovaries and uterus to make sure there are no complications they might have already missed such as a thin uterine wall or a few other issues they look for (again no worries here - I've had enough internal and regular ultrasounds that they don't bother me one bit..plus no real risk with these).

Then, at some point they will take me off of the birth control and start me on hormone injections (here comes the first worry).  I will be injecting synthetic hormones into my body which will stimulate my ovaries to produce A LOT of eggs.  The risk here is that I develop a condition called Ovarian Hyperstimulation Syndrome (OHSS).  This terrifies me.  Basically, the ovaries can begin to overstimulate, and left untreated this condition can become life-threatening.  My doctor ensured me that they will be checking me every other day to make sure that I'm not developing the condition, but my fear is still there. I'm also worried about the mood swings that come along with the hormones, and I worry about having some kind of reaction to the hormones.

If the hormones, against all of my worrying, work perfectly fine without complication, then I will be scheduled for egg retrieval (EEK!).  During this process, they will put me under with anesthetic and then surgically (minor procedure) remove as many eggs as they can.  They hope for 10 eggs each collection to work with.  Since not all eggs will fertilize, this gives them a good sample of eggs to work with.  Ahh,  my second and bigger fear.  I HATE surgical procedures, no matter how minor. I HATE being put under with anesthesia.  I always worry when I have to be put under, and I've had no less than 6 surgeries in my life so I should be used to it by now.  I'm not though.  This also worries me because they stated that they had trouble finding my right ovary.  I'm curious as to how they make sure first that I'm not developing OHSS, and then secondly how they plan to extract the eggs from this ovary if they can't find it.  Hmmm....

Obviously, I need to ask a few more questions and discuss the results with my doctor.  Hopefully, he can easily calm my fears, and I can go into the process with a peaceful state of mind.

Once this whole procedure is behind me, I will hopefully be blogging about how silly it was for me to worry so much.  Hopefully, I will then be blogging about all of my fears associated with the actual pregnancy...oh boy.

Sorry in advance for any anxiety-ridden posts which may result from this infertility journey. I did warn you all in advance, however, in my "About me" section..I'm a worrier!!! 

Wednesday, January 25, 2012

The Update

Well, it's finally OVER.  The appointment I have waited 2 1/2 months for has come and gone, and here's the verdict:

I will be approved for IVF if the tests they are running on 2/9/12 come back ok.  On February 9, I will have my liver enzyme levels redrawn, additional blood tests done for possible related liver issues, and an ultrasound of my liver done, which will indicated if it is abnormally enlarged or if the bile ducts are starting to fail.  All in all, it will tell us just about everything we need to know.

The doctor said she is hopefully optimistic, however, that all will be normal.  When I had my liver enzymes checked in October 2011, my AST or ALT (I forget which one) was quite abnormal.  The high end of normal is a number of 35 or less, and my number was 78.  The day that this October blood draw was done, I had just finished a two week course of Levaquin.  The doctor believes that this may be what triggered my increase in enzyme levels.  She backed this idea up with the fact that the liver enzymes which were redrawn in December put my level at 38.  She said that it's still SLIGHTLY above normal, but it is of no concern.  

She did say that the hormone drugs related to IVF can cause high liver enzymes, but that they should return to normal once the hormones are done.  She said she would be fine to approve me for IVF as long as all the new tests done in 2 weeks come back ok.  We should know if we're ok to start IVF by the 16th of February.  If we are ok, then that puts us starting the process either the end of February or the beginning of March.  My next cycle is due to start 2/24 so quite possibly we can get my testing done immediately after, but may have to wait until the following (late March, early April) cycle.  

All in all, great news and now we're just hoping that the 2/9 tests look good :) 

Tuesday, January 24, 2012

Liver Appointment Tomorrow

It seems like time has flown by since I found out that I wouldn't be approved for IVF without prior approval from a liver specialist as my liver enzymes have elevated.  My appointment is finally tomorrow, and if I've learned one thing over the past few months about IVF it's that I refuse to get my hopes up.

I'm going tomorrow with the idea that this is going to be a lot of tests and a good extra month before we get the approval.  I'm also, however, extremely nervous.  CF is the kind of disease that doesn't care what kind of plans we all have, so I'm concerned that maybe CF has decided it's time to start really bothering my liver.  I'm hoping and praying that I'm not headed down the path toward a liver transplant.  If that's the case then it's a definite "no" for the IVF process.

I will post tomorrow to let you guys know how it went and what the current verdict is.  I've been hearing and reading about a few people at the end-stages of CF and it's been quite depressing and scary.  I know that lung transplant is ultimately in my future, but I refuse to accept that it's ANYWHERE near that time yet.  I am terrified of what happens when I get to that point.

So, that's where I am right now...just thinking about things and a little concerned for the news tomorrow.  I'm taking my mom with me so that no matter what happens, I have someone there with me.  

Monday, January 23, 2012

Favorite Young Adult Books

My dear friend, Cindy, had asked me to blog about some of my favorite young adult literature.  I hadn't even thought of it, but it seems like such a GREAT idea since I love to share my favorite reads.  With my husband being a 6th grade language arts/literature teacher, I obviously find out about some great books!!  Here are some of my favorites:

1. The Harry Potter series - Hands down still my favorite series, and realistically if you haven't read these already it's unlikely that you will just because I say you should.  This is one of the series that I have read and reread; It holds a special place on my bookshelf.  

2. The Hunger Game trilogy - Honestly, I hadn't even heard of these books until recently, but I'm surely glad I know about them now.  A dark, intelligent, and eerily realistic series, written by Suzanne Collins, The Hunger Games is another series which will hold the coveted "read and reread" spot on my bookshelf.  I was absolutely enthralled with Collins's writing style and her ability to make me feel so deeply for all of the characters.  This is one of the few series that has left me wanting to discuss with fellow readers and pose questions that I have come up with since finishing the last book.  Fantastic writing and tremendous characters make these a "can't miss" read.  

3. The Phantom Tollbooth - I just came across this book, despite the fact that it was written quite some time ago.  This is actually a "children's" book, though many of the small wordplay jokes would just sail over a child's head.  This is one of those rare books that provides a great amount of magic and wonder for a child, and then provides that same sense of magic when reread as an adult, only for completely different reasons the second time through.  Having never read it as a child, I just thoroughly enjoyed the humor, wordplay, and morals that were ever-present in this book.  I can't wait to share this with my child when he/she becomes old enough to enjoy it.  

4. The Percy Jackson series - I found out about this series because my husband began teaching The Lightning Thief to his 6th graders, (prior to the movie coming out).  I read the first one in about two days and then eagerly awaited the second one.  It continued this way throughout the series, and I was actually sad to see it all come to an end.  This is not a series I will reread, but they definitely deserve a first read through.  The books are filled with humor and Greek mythology.  It takes an approach that the Greek gods are still around today and have had children with regular humans, thus creating half-blood gods.  Percy, the main character, is one, and he faces a whirlwind of challenges throughout the series.  

5.  Running Out of Time - Tremendous book. Great character development, but mostly it's the plot which carries this book for me.  Although I do not own it, I would reread this one.  The story follows a young girl who believes that she is living in the 1800s only to find out that she is actually part of a tourist location and the year is really 1996.  She is forced into the real world and discovers how scary and wonderful it can be all at the same time.  If you've ever found yourself wondering, "What would happen if George Washington suddenly wound up in our age," then this is a must-read for you.

6.  The Wednesday Wars - Beautiful story.  This book has recently received a lot of acclaim from various websites, but I read it years ago.  This is the book that David teaches his 6th grade advanced students each year, and it is a wonderful story of growing up and coming to terms with yourself.  It follows a young boy, in the 1960s, who feels that his teacher hates him and feels lost within his own family due to his father's overpowering influence and control.  It follows the issues of the time, but it's still quite relevant as the primary focus is of growing up, accepting who you are, and learning that it's ok to walk your own path.  A great read for kids and adults alike. 

While there are many more young adult stories that I've become enamored with, these are just a few of my favorites.  Please comment if you know of any that have earned your praises as well. I love to learn about new literature!

Thursday, January 19, 2012

Chicken Noodle Soup - My Way

When I feel depressed, food is my cure.  I love making something warm and delicious to ease whatever sadness I may be feeling.  Yesterday, my choice of medicine was chicken noodle soup.  I've been asked about the recipe before, so I figure it's time to post it.

This is not TRULY homemade soup as I use a lot of purchased ingredients (including my broth).  The nice thing is that this recipe is an easy and fast way to make a comforting dish.  I always serve this with buttered bread, and even though we both eat at least 2 bowls, this recipe provides meals for a couple of days.  The other reason I love this recipe is that it is so easy to adapt to your own wants and needs.

2 TB butter
1/2 c. chopped onion
1/2 c. chopped celery
2 cloves garlic
1 pound chicken breast cut into bite sized pieces
6 (14.5 oz) cans chicken broth
2 - 4 c. water (depending on your own preference of how watered down you want it)
2 c. sliced carrots (I usually use frozen carrots as they are easier and cheaper)
2 c. egg noodles
1 tsp (or more) of dried basil
1/2 tsp (or more) of dried oregano
1/2 tsp of poultry seasoning*
1/4 tsp of sage*
1/4 tsp of thyme*
1/4 tsp of rosemary*
*Note: I use a lot of spices as they are our personal preference.  I know it seems like an odd combination, but it works so well.  I originally started off just adding in basil and oregano, however, and it was also delicious that way.

1. In a large pot, melt butter over medium heat.  Add in onion, celery, and  uncooked chicken.  Continue to cook over medium heat until onion and celery are tender, and chicken is almost done.

2.  Turn heat to medium-high and add in chicken broth and water.  Allow to simmer together, stirring occasionally.
3. Add in carrots, noodles, and all seasonings.  Bring to a boil, then reduce heat and simmer 20-30 minutes before serving.  Stir occasionally.
4. Enjoy!! 

Wednesday, January 18, 2012

January Blues

I haven't been blogging much lately despite the fact that I promised my blogging would pick up again once the holidays were over.  I apologize for the (at the time true) statement which turned into a lie.  After taking down the Christmas decorations I found myself in a slump, and I'm still there.  I typically get this way once January hits, but this year it's hit a little harder than usual.

I haven't been posting as I hate writing sad posts, but as this is part of CF that I've had to deal with, I felt the necessity to get it off of my chest.  I warn you now though that if you don't want to read a sad post, please just skip this one and rejoin me for my next post which will (hopefully) be much happier.

Over the past few days, a revelation dawned on me which made me quite blue: according to the "average life expectancy" (currently 38 years) of people with my disease, I now have far more yesterdays than tomorrows.  I obviously hope to far surpass the average life expectancy, but just thinking about this fact made me extremely sad.  There is so much that I still want to do with my life, and I feel like I have been wasting time recently.  I also realize how much I want to be there to see my children have children, and I worry if I will make it there.  None of us have guarantees, and I believe I've stressed that enough, but CF causes you to ponder your own mortality much sooner than you should have to.

I also started thinking about the things I would like to do, if I didn't have CF.  I would love to travel the world, but my medications and requirements to stay healthy make that such a HARD thing to do.  I would love to climb a mountain.  I've always been fascinated with mountains, but I know my lungs couldn't do it.  I would thoroughly enjoy being a nurse, but the germ exposure is too much of a risk.  I would love to learn gymnastics as I've always found the sport to be quite beautiful.  Again, my lungs wouldn't handle it.  Most importantly, I would have at least 3 kids.  I've been quite sad thinking that our first child will probably be our last (at least naturally, although adoption or surrogacy is always an option).  I think that's the crushed dream which I find it the hardest to accept.  Pregnancy can be quite difficult on a CFer, and I don't know that I will risk my health to carry another if I already have one child to take care of.

This disease needs a cure, that's for sure.  I want to be here for a very long time, and I want to raise my CHILDREN and see them become good, kind people.

Again, my apologies for writing such a sad post, but I felt it needed to be said.  Hopefully the next post will find me much more chipper and optimistic! 

Monday, January 16, 2012

Current Obsessions

I'm one of those people who finds an obsession, enjoys it for a few weeks or months, and then wants nothing to do with it for quite some time.  Here are my current "can't live without"'s

1. Burt's Bees lip balm.  It's winter and my lips are undeniably chapped and hurting.  Burt's Bees is my favorite way to ease those two problems.  It's much better than Chapstick and it has a nice peppermint tingle to it when you put it on your lips.

2.  Young adult literature.  I've been reading dozens of young adult books recently.  I find that they are filled with more humor, more morals, more wholesome fun, less sex, and less cursing.  I've been devouring book after book.  I have even found a few books that I hope to share with my child someday.

3.  Wii Fit.  A gift from my parents for Christmas, I have been enjoying using the game while trying to stay active.  There is a body test which tells you what your Wii Fit age would be and I have been obsessing over achieving a 24 (my actual age) on the game. It's easier said than done.

4.  Nintendo 3DS.  A gift from my mother-in-law, David and I have both been enjoying playing it recently.  The games are fun, and we are in awe of the fact that the screen really is 3D...without glasses!

5.  U2 and Coldplay.  The two bands I have been listening to non-stop recently.  I keep getting their music stuck in my head, and when I'm in the car it's the only thing that is on the stereo.

As you can probably tell from my above list, there hasn't much productiveness occurring in our household recently.  We've been enjoying ourselves and just relaxing.  What else is there to do in January?  

Tuesday, January 10, 2012

And the House is Bare. . .

I did one of my least favorite activities today - taking down the Christmas decorations.  I'm actually still working on the remaining cleaning from this activity, but I had to take a break to do my treatment.  I'm always amazed by two different things when the decorations finally come down: 1) Our house looks incredibly bare and boring.  2) Our living room is HUGE!

I hate losing all the cheer, but I love gaining the space back after everything is down.  I usually wait until the end of January or beginning of February to take everything down, but this year I'm just ready to continue on to spring!  I think part of the reason I feel this urgency is because of the crazy weather.  It's 56 degrees outside right now . . . in northern Illinois . . . on January 10.  This is only one of many days like this recently, and tomorrow we are going to almost hit 60!  This weather is confusing everything as my friend told me she had baby birds in a nest and the violets were blooming. . . in Illinois . . . In January. Crazy.  I think the other reason I'm so anxious to get into spring is because that is when our IVF process will continue on.  I have a lot to look forward to this coming year, and I'm definitely ready to get it all started.

I end up taking down decorations by myself while David is working.  He has a really hard time with the decorations coming down (it makes him sad to lose the cheer and happiness of the season), and it's much easier if he comes home and it's just already down.  I must say, I'm quite proud of myself this year.  I managed to get the 7.5 foot tree down, all decorations put away, AND all the furniture moved back. . . by myself! During the furniture moving process, all baseboards and floors were vacuumed, and all the furniture was dusted.  I can already feel my back telling me how stupid I was, but my lungs are feeling just fine.  Gotta love that!  Anyone planning on visiting - now's your chance . . . the house will NOT be this clean again til summer!

After my treatment, I'll finish cleaning a final few things, throw in a second load of laundry, and go grab green peppers for dinner: stuffed peppers!

Saturday, January 7, 2012

Hashtag? QR codes? What?

I feel old.  


Because I do not understand the purpose of Twitter. I do not know how to Tweet, I do not get why it's a viral phenomenon, and I have no clue what a hashtag is.  I keep hearing it everywhere.  I keep seeing it everywhere.  I don't get it.  

I thought this was the extent of my "feeling old"-ness.  I was wrong.  Now I want to know what these QR codes are.  What is the purpose? I'm seeing THEM everywhere too. 

I feel like my parents when I say this, but this technology stuff is moving TOO fast for me!  I need to start reading up on all of this before I'm lost forever behind the curve!  I'm just proud I know how to use my iPhone, and I'm blogging.  

Baby steps...that's all I can do!

Wednesday, January 4, 2012

A New Year!

Happy New Year all!! I am hoping that 2012 is already bringing you happiness, health, and good fortune!

I feel like I have completely dropped off the face of the technological world during the past four weeks.  Prepping for Christmas always takes me awhile, and then once David gets off of work I spend only a few minutes on the computer at a time.  I haven't been writing much as I have been enjoying every second I can with my husband.  I will say that my iPhone was close by at all times, so I technically was not totally unplugged!  

Christmas was beautiful this year as we celebrated with both sides of the family (as usual).  We did something completely different this year when we decided to stay up at my mother-in-law's for Christmas Eve and bring our dog with us. I will tell you that we have an IDEA of what having a child will be like now - exhausting!  Being in a new place with mostly hardwood floors (which she is afraid of) was an experience for her, but she did really well overall, and she received multiple "cookies" during the course of that night and the following day.  

We were spoiled rotten with gifts this year as well. We are very grateful for the continued generosity from our family and friends at Christmastime.  David and I exchanged our gifts to each other as well.  He got me 4 pairs of fleece pajama pants, a Mickey Mouse top, and socks!  I gave him two pairs of fleece pajama pants, and a Nintendo Super Mario Bros. hoodie.  We also got each other an ornament, as per tradition.  My ornament to give was a Hallmark ornament which is about our family and says 2011 on it.  David got me a Dunkin Donuts ornament (a pink donut box) which is appropriate as we have really enjoyed our donuts this year!  

During the remainder of the break, we relaxed, laughed a lot, ate out a lot, watched a dozen movies, spent time with my cousins, and did very little to no work.  We did have a party for our friends as well, but I ended up having to kick everyone out to make a detour to the emergency room as I had another instance of hemoptysis.  This time, everytime I brought something up, it had blood in it.  I am now on a two week run of Cipro and have an appointment to see my CF doctor again on Jan. 12.  

The new year has been relatively quiet so far (knocking on wood right now), and we are sad to see the break come to an end.  We have had time to think about what our hopes and dreams for this coming year are.  Here is what we've come up with:

1.  Have David make it through the school year while having his kids show improvement on Discovery assessments and ISATS.
2.  Eat healthily which includes me making more dinners at home and in turn eating out less.

and our biggest hope and dream for this year

3.  Hopefully start our family.   

We'll see how this last hope and dream goes, but it's the one we're most excited for.  

What hopes and dreams do you have for the coming year? Or what resolutions did you make (and hopefully not yet broken) at the strike of midnight?