Sunday, October 30, 2011

The constant pregnancy symptoms

Sorry in advance if this post seems all over the place and not well-written. I'm exhausted but felt like posting.

I've noticed something as we have been trying to conceive: each month I have pregnancy symptoms that I'm sure means I'll get my BFP! Then, I'm deeply disappointed when my AF starts a few days later.

I'm not sure if these new "symptoms" are all mentally constructed or if some of them have to do with my body getting used to doing everything on its own again, without synthetic hormones.  I just know, that since getting off of the pill in June, my body has been wreaking havoc on my mind!

June, I remember having spotting, sore breasts, cramping, and nausea.  This continued for July, August and September as well, although in September my breasts were SO very sore and in such a different way that I was almost certain I was pregnant.

It's frustrating when your body makes you feel like you're lifelong dream is coming true, only to disappoint you a few days later.  I do believe that some of these feelings are psychological because I want a baby so badly. I do think others are probably from the hormone changes in my body.

This month has been different though.  I actually feel just PMS-y.  I have very mild cramps, much less severe than the past 4 cycles.  My chest doesn't feel terribly sore, and I feel really good and happy.  Totally different than my previous cycles.  Because I'm not nauseous or really sore, I'm almost 100% certain I am not pregnant this month which I think may also be keeping my psychological symptoms at bay.

I'm still disappointed because when I worked out potential due dates I realized how perfect being pregnant right now would be.  We would be due right around our 2 year anniversary at the beginning of July.  I would have David home with me for the first two months which would help tremendously when getting back into the routine of treatments and such.  Also, we are standing up for our friend's wedding in August and I would be fine to leave the baby with grandparents and endure a whole night of partying with our best friends.  It would give me plenty of time to recover and rest up.  Regardless, God knows when the right time is, and I have to keep reminding myself of that.  I'm also still waiting for the results of the ultrasound from my doctor, so who knows we may be heading to infertility soon anyway.

Who knows, my crazy fake pregnancy symptoms may be stopped for good or they may come back again next month even worse. I'm hoping for the former one of these two options! :)

Friday, October 28, 2011

Changing things around a bit

Happy Friday all!

Over the next few days, I'm going to be playing around with new templates and background designs. Please bear with me as I make a decision on a new template. I apologize for any inconvenience that it may cause. Feel free to tell me if you like or dislike a template that you happen to see. Overall, the purpose of the change is to infuse my personality into the design of the blog, while still maintaining an easy-to-read and appealing look.

Thursday, October 27, 2011

Blogging has changed me for the better

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

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

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

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

Even more important, however, I have been thoroughly enjoying reading blogs.  I have a good number of blogs that I check daily for updates.  I eagerly await new posts so that I can see how my fellow cysters and fibros are doing.  To me, reading other blogs feels like I am offered a chance to read their journal or diary. I feel connected to others in a deep way, and it never ceases to amaze me how much people truly expose their soul in blogging. New posts are like candy to me, and I also enjoy commenting on what I’ve read when I feel I have something pertinent to say. 
It also amazes me how many of the authors reply to comments that I (or anyone) makes. They enjoy the feedback and work hard to acknowledge comments and answer questions. It’s truly remarkable.  I am surprised and encouraged by their dedication to their readers, and to raising awareness for CF.  I cannot emphasize enough that the group of authors I follow are truly amazing and inspirational people. 

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

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

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

Wednesday, October 26, 2011

CFRD appointment and Ultrasound

Today was an interesting day, that's for sure.

I had my endocrinologist appointment to discuss my CFRD (my regular doctor is back from maternity leave now, so I wanted to see her).  She was actually really happy with my numbers and said she wasn't concerned at all about getting them under control during pregnancy. We came to the conclusion that during pregnancy, I will be put on an insulin pump so that I don't have to worry about wanting to eat at anytime during the day.  But for now, I'm going to continue what I'm doing and add the most minimal amount of NPH (long lasting) insulin as possible at night time.  Hopefully this will help control my overnight high.

Then, she told me she had bad news.  She's leaving the hospital to move to Atlanta.  I promise you that I was almost in tears. I love this doctor and I feel like she really grasped CFRD and worked well with it, and now she's leaving.  She will put me back with the previous doctor (whom I didn't necessarily care for) at the end of November when she leaves. This was my last time seeing her...and I'm very saddened by this.  I'm sure it will all be fine, but once you build a rapport with a doctor, you hate to see them leave.

After that, I went to get an ultrasound done since my high-risk OB wanted a baseline to have on file.  I ended up having to have both types of ultrasound which is not the most pleasant experience.  Then, when the ultrasound tech had spent about 10 minutes on one area I asked her what was wrong.  The problem, she said, was that she couldn't find my right ovary.  Well after fully looking for 5 more minutes, it was determined that my right ovary was nowhere to be found on my right side.

The last ultrasound I had, due to a 5 cm ovarian cyst, showed that my right ovary was on the left side.  I told her that and she proceeded to look, but couldn't find it there either.  Instead, she saw multiple cysts in my left ovary.

So with that said, I'm not sure where my right ovary is or if it even exists in my body, and it looks like my left ovary is a little screwed up.  This could be why I'm not ovulating, and I have a feeling I might be visiting my high-risk OB or infertility a little sooner than expected.

Tuesday, October 25, 2011

CF Belly and New Jeans

Let me begin by saying that I have always, always been self-conscious of my belly.  I will not show it to anyone and I hate shirts which emphasize its size (especially relative to the rest of my tiny body). 
That being said, my past weekend included a trip that I didn’t think I would be taking this early in my life, and this blog will detail something I never thought I would write about (although I hope it will help other cysters).

A few months ago my doctors gave me a strict order that I needed to start gaining weight. Well, 8 pounds later, my pants won’t button and the ones that I can wrestle together end up causing me terrible stomach pains.  Obviously, it was time to get new pants, but I have an issue in this department. 

Due to my cystic fibrosis, my arms/legs/butt stay really thin and refuse to let meat be added onto them, but my stomach keeps growing (it also bloats like no other due to digestive problems. I swear that some days I look at least 4 months along).  I’ve tried crunches but I really don’t think that my abdominal muscles are the problem because with all the coughing I do daily I work them out pretty well.  Up until a few weeks ago, I thought I was the only one who experienced this not-so-pleasant phenomenon.   Other cysters, however, have posted blogs about their CF belly and I have come to find out that I am far from alone on this journey.
Normal belly now, without bloating.

And no, I'm not "sticking it out" You can see why my  button up jeans are now hurting.

Before putting on weight, I was wearing at most a size 3/4 jean.  They were baggy in the thighs and butt, and they fit tightly around the waist.  This is the issue I have had forever and I was getting used to it.  With my increasing belly, however, I realized I need to go up to a size 5/6.  I reluctantly tried a pair on and realized quickly that both of my thighs would easily fit into one of the legs, but the waist would just barely snap closed. 

Well now, I was discouraged.  If I wanted a comfortable pant size with room to grow I would have to buy 5/6 and 7/8 jeans, but if I wanted them to fit my thighs and butt I was going to need a size 1/2.  This is a depressing conclusion to reach when you are trying to conform to retail-driven America. I know that I am not the only woman out there who loathes buying jeans because you just can’t get the right fit. . . ever!  Thankfully, a  light bulb was going off in my head:  Maternity jeans.

That’s right.  I’m not pregnant (although I have been asked when my due date is), but I quickly made my way into Motherhood Maternity in my local mall.  I felt completely out of place in this store since there was no little life growing in my belly, but I started to browse through the jeans regardless.  I tried on a small size and an extra small size, hoping that at least one pair would fit correctly. 

As I went into the oversized dressing rooms (these should be in every store, honestly), I quickly pulled on the small sized jeans.  The feeling in my stomach was amazing. There was no struggling to button them, struggling to breathe, or intense pain whenever I sat down!! The legs, however, were still too big.  I looked at my thighs swimming in the material and my non-existent tush in the mirror.  I quickly took them off and crossed my fingers that the extra small pair would fit just like they should. 

I pulled the extra small on and have never felt so excited to be jean shopping in my life! They were perfect! Again, no pain in my stomach, but this time my legs fit normally and while my rear is still somewhat non-existent, it still looks better than it looks in normal jeans.  I was thrilled!

I rushed out of the dressing room and looked for additional extra small pairs, but all I could find were boot cut which unfortunately I cannot pull off.  I sighed, realizing that my size is still the minority, but still feeling excited as I brought my one pair of jeans to the cash register.  I do plan on hitting the store again early next month or checking out Kohls maternity section. 

As I paid for my jeans, the store clerk asked me numerous questions about pregnancy and when I was due, to which I had to sadly tell her I was not pregnant.  Surprisingly, she was nice about it. She said that many customers who are not due come into the store because the clothing seems to fit better than standard clothing.  She did, however, sign me up for coupons and give me an exciting goodie bag!

When David and I got home we couldn’t help but laugh at the goodie bag.  We now have a (gender-neutral) pacifier for our future child, nursing pads, and loads of reading material on breathing techniques and the dos and donts of pregnancy.  I may not use them for quite some time, but I decided to keep them anyway.  Why not? They’re wrapped well so they will store just fine. 

New jeans and no buttons = comfortable as can be

So next time you see me (please don’t ask me when I’m due), I’ll probably be wearing pants with a spandex material for the tummy.  You may not notice the difference (or maybe you do I know?), but I can assure you that for the first time in months I’m not having extreme stomach pain every time I sit down.  And that my friends, is worth braving a trip to the maternity store, even when you’re not pregnant! 

Thursday, October 20, 2011

High-Risk OB

Warning: Do not read this post if you are at all uncomfortable with words like cervix, or mucus!

I just returned home from my visit with the high-risk OB and I'm feeling so much more confident about TTC.  My doctor is up at University of Chicago, just like every other doctor. This is nice because all the departments can talk to each other if anything ever happens.

I really liked the OB that I was referred to. He has a very laid back and calm personality which is exactly what I (as an uptight, nervous woman) will need when I'm pregnant. We went over all of my medical history and all of my medications. He did a full exam and scheduled an ultrasound for next week, but other than that he doesn't feel the need for any more tests at this point in time. I've had a full cardio workup, so he's not too concerned there. He is perfectly ok with me getting pregnant and in fact said he has no concerns about a future pregnancy.  He has had other CF patients and he said that the patients that were approved of being healthy enough to have a pregnancy have done very well.  It is comforting to know that your doctor has taken care of other patients with the same condition.

I was going to ask him about Mucinex since I have seen others on the forums that have gotten pregnant after using it, until he said that my cervical mucus looks....NORMAL. I promise you if I wasn't on that little exam table, I might have fallen to the ground. I was expecting him to say that it was non-existent or that it was very thick..but nope..normal.  We also agreed that the main problem seems to be that I'm not ovulating, but as I have not been off of the pill for over a year, he's not terribly concerned by that factor. He wants me to keep trying until January. If at that point we still are not pregnant, he is referring me to the infertility clinic.  So, if my silly body will just ovulate there is a real chance we could conceive on our own.  I'm stunned by this news..absolutely stunned.

So after an hour and a half meeting/exam with him, he walked out of the room, giving me the following advice, "Now, go get pregnant!"

I left feeling content, shocked, and confident.  When I walked in, there was some concern that he would tell me I'm not healthy enough for a pregnancy or that he is too concerned of my health to go through with a pregnancy. Having those fears eased is the best feeling in the world!!

Wednesday, October 19, 2011

Vertex News and Excitement.

I posted TWO new posts today.  This blog went out to my Wordpress account and the other blog, detailing my excitement for the high-risk OB is below. Sorry for all these extra posts!

Yesterday, I subbed in a 5th grade classroom and I realized, yet again, how much I miss working. Due to the economy, I have not had the option to work, but the underlying reason I have yet to be employed is far deeper.  When I was working full-time last year, my lung function was not doing as well, I was missing treatments, and I was getting sick. . . often.  David and I realized at that point in time that my life-long dream of being a full-time teacher is, currently, unobtainable. My lung function is incredibly high and I am grateful for that, but if I continue to work full-time, my lung function will not be high for long.  It's impossible for me to include a full-time teaching job (plus coaching/activities, grading, lesson planning, and other take-home work), maintain my rigorous treatment/exercise schedule, makee dinners, and help keep the house clean.  It's overwhelming and there simply are not enough hours in the day.

Facing this fact is depressing, but I've had almost a year to get used to it now.  I keep looking for jobs that will be flexible enough to make my treatment schedule work, and would be away from enough germs to keep me healthier. I can tell you that it is nearly impossible.  I'm currently subbing as much as possible which keeps my dream alive, but still exposes me to a tremendous amount of germs.  Sadly, I came home yesterday from subbing feeling beyond wiped out and still had to make time to cook dinner and do my treatment. It was another reminder that my health is not as good as it used to be even 2 years ago.

With that said, David and I have a goal: keep me as healthy as possible so that I can fully enjoy the benefits of a cure for CF.  EnterVertex Pharmaceuticals! Vertex has been in the process of working on two therapies which treat the underlying cause of cystic fibrosis. Up until now, every drug on the market has been about treating the symptoms, so this new drug would be groundbreaking.  Today, Vertex has announced that it has officially submitted its drug, VX-770 for FDA approval.  VX-770 would not treat my CF mutation (DDF508), but it would be a miracle drug. It is being seen as the "cure" for CF right now, and the best part about the drug is that it's a simple pill to swallow.

Vertex is also actively working on a combination drug which is specifically for my CF mutation (the most common mutation in the CF community).  They are currently in clinical trials throughout the United States and so far it seems the drug has shown very promising results.

Here is the text taken from the Vertex site which further explains these new drug therapies.

(Cystic Fibrosis)

Cystic Fibrosis (CF) affects about 30,000 people in the United States and approximately 70,000 people worldwide. Cystic fibrosis is caused by defective or missing CFTR proteins, which result in poor ion flow across cell membranes, including in the lung, and the accumulation of abnormally thick, sticky mucus that leads to chronic lung infections and progressive lung damage. In people with the G551D mutation, CFTR proteins do not function normally at the cell surface. VX-770, known as a CFTR potentiator, aims to increase the function of defective CFTR proteins by increasing the gating activity, or ability to transport ions across the cell membrane, of CFTR at the cell surface. In people with the F508del mutation, CFTR proteins do not reach the cell surface in normal amounts. VX-809, known as a CFTR corrector, aims to increase CFTR function by increasing the trafficking, or movement, of CFTR to the cell surface.
A Phase 3 clinical development program for VX-770 is complete, and Vertex submitted a New Drug Application for VX-770 to the U.S. Food and Drug Administration (FDA) in October 2011. Vertex is seeking approval of VX-770 for use in people six years of age and older who have at least one copy of the G551D mutation in the CFTR gene. Vertex also plans to start the registration process for VX-770 with the European Medicines Agency (EMA) by the end of October 2011.
Vertex is also conducting an exploratory Phase 2 clinical trial to evaluate combination regimens of VX-770 and VX-809 in people with the most common mutation in CF, known as F508del.

VX-809 is the second investigational oral drug candidate for the treatment of cystic fibrosis (CF) to be advanced into development as part of a successful collaboration with the Cystic Fibrosis Foundation Therapeutics, Inc. (CFFT).
Cystic fibrosis is caused by defective or missing CFTR proteins, which result in poor ion flow across cell membranes, including in the lung, and the accumulation of abnormally thick, sticky mucus that leads to chronic lung infections and progressive lung damage. In people with the F508del mutation, CFTR proteins do not reach the cell surface in normal amounts. VX-809, known as a CFTR corrector, aims to increase CFTR function by increasing the trafficking, or movement, of CFTR to the cell surface. In people with the G551D mutation, CFTR proteins do not function normally at the cell surface. VX-770, known as a CFTR potentiator, aims to increase the function of defective CFTR proteins by increasing the gating activity, or ability to transport ions across the cell membrane, of CFTR at the cell surface.
Vertex is conducting an exploratory Phase 2 clinical trial to evaluate combination regimens of VX-770 and VX-809 in people with the most common mutation in CF, known as F508del. Vertex recently completed the first part of the trial and is on track to initiate the second part of the trial in September 2011."

The news makes me want to cry. It's impressive, incredible, and miraculous. I'm unsure of whether the CF daily treatment schedule would be altered at all, but regardless if it makes me healthier, it's one step closer to getting into a classroom for real. It's one step closer to being able to work full-time again. I know many reading this will think something along the lines of, "Trust me, you don't want to work." To those people, please try to understand the emotional/mental toll that unemployment can take on you.  I am failing to help provide for our family, and there are days when I feel incredibly worthless. David fights me to the end on these feelings, but regardless, they're still present. I can not wait to be able to work again.
Above all, if this drug goes through the rest of its clinical trials and becomes FDA-approved, it is one step closer to seeing my 75th birthday and beyond. It's a step toward a longer, healthier, and more enjoyable life, and it will provide extra years with my husband. I don't think anyone can blame me for being just a TAD bit excited! :)

High-Risk OB Prep

On Monday, I shared with everyone how excited I was about visiting the high-risk OB/GYN.  I feel like this is the logical next step in my pregnancy journey, and hopefully he will have some advice regarding our attempts TTC. I have been carefully following another cyster's blog (Inhaling Hope - who also has EXCITING news to share!) and she wrote a post about having a list of 20-ish questions to ask the high-risk OB/GYN.  I'm currently in the process of coming up with my own list and adding in questions that she was generous enough to share with me.  I want to feel educated and at-ease when I leave the office tomorrow.

While my excitement is not to be understated, I'm also feeling somewhat sad. I have always wanted to get pregnant right around this time so that I can tell my family/friends at Christmas time. I've always (I started thinking about this around age 10..honestly) had this perfect idea of how I would share the news, and if I were pregnant now, I would be right around 12 weeks come Christmas.  Unfortunately, I'm not pregnant yet and who knows how long it will be. I think I need to stop creating my own plans and ideas and let God take over.  Whenever it happens will be wonderful, and I'll find a unique way to tell my family no matter what month it is :)

On that note, I plan to finish my list of questions today and hopefully make a loaf of banana bread. It's extremely dreary here today, with high winds and gallons of rain. It's one of those days where I can hear my bed calling my name loudly while my body defiantly pushes toward the excessive amount of work that needs to be done.  I hope to spend some time working on my novel later this week, but I feel like all the other chores constantly prevent me from doing this.

I wish everyone a blessed and wonderful Wednesday. Congratulations to Inhaling Hope on her wonderful news and congratulations to Mr. and Mrs. Ronnie Sharpe on the arrival of their "peanut," Mckenna!

Monday, October 17, 2011

An exciting week!

This week is going to be a challenging week for my husband. I wish there was a way that I could make it easier for him, but other than providing food and comfort, my hands are tied. 
Since it’s going to be such a long/hard week, I figured I would take some time to write about a few things I’m grateful for and excited for this week.

#1) My sister is coming over for a visit today.
I am so blessed to have such a close relationship with both of my sisters, but unfortunately only one lives close to me.  My sister, Ellen, normally works 40 hours a week and commutes over 10 hours a week, so our time to hang out is rather limited.  Today, she’s going to come and spend some time with me.  Normally during our hangouts, we talk a lot and do very little of anything else.  It’s nice to just catch up with each other and give advice to each other, and I look forward to our time together (however limited it may be).

#2) Fall is definitely here
We have been experiencing an Indian Summer in Illinois, but the last few days the weather has drastically changed. Today, I woke up to a 32 degree wind chill and even thought about turning on the heat.  I’m ready for the chilly air this month and I’m getting excited for Halloween, Thanksgiving, and before we know it, Christmas.

#3) My library is now participating in Kindle sharing
Last Christmas, my parents gave us a Kindle, and I have absolutely enjoyed it.  Unfortunately, I do not buy books anymore (too expensive, and we have too little money), and I was running out of good, free books to read on the Kindle.  Because of this, I was making weekly trips to the library, which I enjoy but sometimes I just want a new book without leaving the house.  Yesterday, I logged on to the library website and noticed that Kindle sharing was finally here! I immediately jumped onto the website and downloaded my first library e-book! It was so exciting, and I’m already greatly enjoying my new story!!

#4) I see the high-risk OB/GYN on Thursday
This is the one I’m probably the most excited for.  I was referred by my Nurse Practitioner last week and I have the appointment this week already. I’m excited to meet with the doctor and make sure that he doesn’t want any additional testing done. I’m also interested to share my charting with him to see what he has to say. I’ve been charting for 2 cycles now and have noticed that my basal body temperature never rises enough to indicate ovulation. Also, I never have egg-white CM – EVER.  I am curious to see his reaction to this information. I know we haven’t been trying for too long (since July), but it seems like it’s been forever. I’m not getting discouraged, but I am ready to be pregnant at the same time.

There are so many more people/items/experiences I am excited or grateful for this week, but these are the top ones on my list right now.  I hope everyone is having a wonderful start to their week!

Friday, October 14, 2011

How Would Life be Different. . .

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

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

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

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

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

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

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

Thursday, October 13, 2011

Clinic Day

Happy Thursday everyone!

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

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

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

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

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

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

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

Wednesday, October 12, 2011

A Terrifying Night

We all have days when we want to destroy our alarm clocks and curl back up in our warm comfy bed, shutting out the world and refusing to let time pass.  I have these days from time to time, but rarely back-to-back.  Well, this entire week has been one, giant, curl-up-and-let-the-world-disappear day. 

For me, Autumn has always been a time to slow down and reflect (as previously posted).  This Autumn seems to be the exact opposite.  I also realize that I’m not the only one experiencing this right now.  I’ve been talking to numerous people who just feel like life is extremely difficult right now, or that it is moving way too fast and they are struggling to keep up.  I’m overwhelmed, plain and simple.  I’ve got a lot of things (not being put in the blog) going on in my life, and it’s causing me to stress out. 

I’m not sure if it was the stress, the antibiotic, or another problem altogether, but last night I experienced one of the scariest things I’ve ever had happen to me.  I woke up from a dream with a sharp pain in my chest.  It was a weird dream, but it wasn’t a nightmare, so I don’t think it was fear that woke me up.  Regardless, I started feeling my heart beating in my head and chest, and it felt…weird.   When I checked my pulse, I realized my heart was in some REALLY crazy rhythm.  It was beating extremely fast, skipping beats, adding double beats, and just plain terrifying me. 

Having never had this happen before, and having pain in my chest, I woke my husband up and we started to drive all the way to hospital (20 minutes away).  I am very reluctant to enter hospitals, but this episode downright scared me.  I couldn’t get my heart rate below 150 and it was beating really strangely, so I figured it was better safe than sorry to get checked out. 

Then, about a block away from the hospital, my heart rate returned to a normal rhythm and was beating about 80 beats a minute.  It happened all of the sudden, and then I felt fine.  So we waited a few minutes to see if it was going to continue beating regularly, and sure enough it did.  We then turned around and headed back home, where I proceeded to stay up from fear for the rest of the night. 

This whole event was so weird and terrifying.  My heart rate has been elevated since waking up from a nap this morning (it’s staying about 120) but my heart rate always runs a bit fast, so I’m not worrying about just the fast rate now. I just can’t figure out what happened.  I have been known to have panic attacks, but they have never changed the rhythm of my heart before, and I’ve been attack-free for months now.  I’m not drinking caffeine, and I drank plenty of water last night.  I honestly don’t know, but I do know I’m more than little worried of it happening again. 

I’m not posting this to my other blog as I really don’t need a lot of people knowing about this, but I did want to ask my fellow cysters/fibros if they have ever experienced anything like this.  I’m hoping I’m not alone on this one.

Until then, I’m going to go back to bed, curl up with a good book, and forget the problems I have to face for just one more day.  

Friday, October 7, 2011

Date Night and Revelations!

Marriage is such a beautiful gift and too often we are swept up in the daily struggles of life to fully cherish what we have.  I feel so blessed to have a partner in this world who sees me as his equal, supports me in every way he can, worries about me, treasures my insights and ideas, and loves me for who I am.  Not enough people in this world can actually say that statement in truth, and that saddens me.  To be honest, I don’t know where I’d be without my husband. He’s my best friend, my rock, and my life-long love.  My love for him comes only second to my love for God, and to have that sentiment reciprocated is the best feeling in the world.

Unfortunately, this school year has been extremely stressful and a true test to our marriage because of how little time we actually get to spend together.   Since every day has been feeling very repetitive and mundane, I decided that we desperately needed a date night.  Well, tonight was one of the best nights we’ve had in a long time.  For the first time since the school year started, David and I took the night to enjoy each other’s company and have a romantic dinner and movie.  We laughed, stuffed ourselves with fantastic food, kissed, held hands, and fully appreciated our time together.  We even took a drive by our old college, taking in how it has (and hasn’t) changed since we left. 

Just the time spent sitting in the car, blaring the music, and smiling at each other, while I sing terribly off-key and he sings right on pitch, was fabulous.  Yet, we made the night even better by going out to one of our favorite restaurants, seeing a cheesy romantic comedy, and holding hands every chance we got.  I honestly felt like we were just starting to date again, and it was a wonderful sensation! 

After the movie, we decided to drive by our old college.  Wow, is it funny how a few years can change things.  The buildings are the same, and the parking lots have only slightly expanded, but the atmosphere just seems so different now.  When we were there, it was like the entire world was open to us and every possibility lay before us.  Now, I see the fresh faces of eager, young, and energetic college students, and I realize they don’t know just how good they have it. 

I remember being there and struggling to pull myself out of bed some mornings (especially when my CF was acting up).  I would attend about 5 hours maximum of classes and then had the rest of the day free to do homework, sleep, or hang out with friends.  Seriously? What is more perfect than the above description?  I didn’t “pay” rent (although my student loans beg to differ), I had meals made for me, I was surrounded by people my own age who actually cared about me, I developed life-long friendships, and I found the love of my life.  College was such a great time in my life, and I am so grateful to have gone where I did (even if my degree is of no use now). 

After leaving our detour, David made an interesting but quite accurate statement that I hadn’t thought of before.  We had been talking about our college memories, our up-all-hours-of-the-night and desperately-need-coffee days, and about our crazy and random road trips, when he suddenly looked over and said, “It’s funny how fast we became a family.” 

Wow. That line really hit me hard.  I hadn’t thought about it in those terms, but he was exactly right.  I don’t know why I’ve always envisioned a “family” being us and a child, but that’s really not the case.  We’re  a family already.  We look after each other, fulfill each other’s needs and desires, listen to each other, love each other, and treat our dog as if she’s our daughter.  We have an established routine and we struggle if we have to vary from it. We love sitting on the couch and doing nothing. Also, we can go for hours without talking and know just how the other person is feeling.  It’s quite evident that we’ve already started building this beautiful family unit that one day will hopefully include a child or children.  I’m not really sure when it started (was it right after our marriage or was it starting even before that?), but we have certainly evolved, for the better, from our college days.  

Marriage is such a beautiful gift.  Looking back on our journey from where our relationship started to where it is now is breathtaking.  I’m so proud of us, and I’m excited about what our future holds.  I’ll tell you one thing for sure, if date night brings revelations like this all the time, it’s going to have to become a pretty regular thing around this house. 

Thursday, October 6, 2011

The Joys of Levaquin

Hello all - I'm sorry for the double post today!! Just had a lot to say, I guess! :)

Please, don’t get me wrong: I LOVE that antibiotics make me feel better.  That said, I also tend to dislike many of the side effects.  There is, however, one in particular that I absolutely loathe. 

Whenever I take Levaquin, I tend to develop sensitivity to the sun.  It’s actually a known side effect of the drug, and it’s quite annoying.  Today, my bestie and I walked around the neighborhood (20 minutes outside time max), and I suddenly started to feel itchy on my face, neck, and arms (wherever the sun was touching me).  We decided to head back into the house because we obviously didn’t want it to get worse. 

That was about 8 hours ago. I now have little white welt-like objects all over my forehead and neck.  They itch.  They also feel like someone is stabbing me with a million little needles over and over again.  I’ve showered and tried to keep the area cool, which usually makes them go away.  They, however, have lingered on, trying to annoy me to the point of scratching my skin off.  I must say, it’s probably a very good thing I never had chicken pox. . . I can’t handle itchiness very well!

Other than that side effect, my antibiotic treatment is going pretty well. I’ve developed a sinus infection, but the junk in my chest seems much better.  My doctor sees me next week and so does the ENT, so we’re going to wait for the clinic visits before deciding on any further treatment. 

I hope everyone has had a good week and has a blessed Friday! I’ll be subbing tomorrow so I doubt there will be a post until late Friday night or over the weekend.

Update on our efforts TTC

It’s been a crazy last month, honestly.  I spent a good amount of time learning how to chart my cycles which, although not necessarily difficult, takes a different amount of dedication than I’m used to.  I spent the first moments of each morning with a thermometer in my mouth, jotting down the little number on to my nice, printed out chart. I also made sure to check my cm (or lack thereof) everyday.  We did everything right for the past month, but obviously still turned up a negative HPT. 

Obviously, many women have this happen to them.  I know I shouldn’t take it personally or think that there is necessarily something wrong just because we didn’t manage to get pregnant for a second month in a row.  It’s just discouraging.  It feels terrible when you/your husband are a perfectionist, and you make every effort to do everything right, only to wind up having your best efforts not work. 

As you can see, at the end of last month I was slightly disappointed.  We would have loved getting our positive last month, because it would have worked perfectly with David’s school district.  He would have been out of school right as the due date approached, and we could have spent the whole first 3 months together.  It wasn’t mean to be this past month, and I sincerely trust God with all of this, but it was still discouraging.

Then, at the start of this month, I found myself questioning our decision to TTC following Nicole’s journey and story.  I sometimes find myself second-guessing the whole idea.  I worry that I won’t be healthy enough to carry a baby or that something will go wrong.  I do, however, think most expectant mothers think these thoughts too and having CF only adds to this fear.  This doubt caused me to forget charting for the first week or so.  Then suddenly, a few days ago, I woke up feeling really positive about the idea.  I realized that if it’s meant to be it will happen, and there’s no use dwelling on the negative possibilities. I can acknowledge them, but I refuse to dwell on them. 

So, about a week into my cycle, I’ve picked up charting again.  Except now, I’m on Levaquin and my doctor has asked me to abstain from TTC.  Of course, next week I should be ovulating so that may very well mean that this month is a wash and we will have to start trying again next month.  It’s crazy the mindset you get into once you make the decision to start a family.  It just can’t happen soon enough.  I’ve even caught my husband saying things like, “They make it sound/look so easy.”  I know he’s getting discouraged and ready for it to happen as well. 

So, there it is. The update, or lack thereof, on our TTC journey.  Had we not received a positive this month, I was supposed to meet with my OB/GYN to discuss further treatments, but that meeting may now be pushed off until December.  So, in the meantime, we’ll continue to try (once the Levaquin gets out of my system), and I will continue to make myself as healthy as possible. 

To all my other cysters TTC: I hope you’re able to stay positive with all the news in the CF community.  It’s been a hard past month and I think we’re all ready for a new season and a new month.

Wednesday, October 5, 2011

A Glimpse of Autumn

Yesterday, my bestie came over and made me leave the house to go for a walk.  Although I was exhausted, I was greatly appreciative for her suggestion.  Below are a few of the pictures I captured (I'm not photographer, but I enjoy taking snapshots here and there).

Love this view over the pond

Just another view over the pond

Up-close view 

Love the way the sun changed the picture

Sunspot looks like a flower - pretty

Beautiful colors

When the sun streams through these - they look like they are on fire

Captured a great picture of our Golden in front of the colored trees

This one is my favorite - not sure why :)

Tuesday, October 4, 2011

Just Venting

I apologize in advance if this post seems negative or is so poorly written that you want to poke your eyes out.

I'm day 7 into my antibiotic (Levaquin) and all I want to do is sleep. Even right after waking up from a long nap or a good night's sleep, I just feel exhausted.  I'm also getting intense sinus headaches which makes me worry that the Levaquin isn't helping out enough (my lungs feel better but my head feels worse).  I took my temp tonight and it's 99.0 which again makes me a little nervous because I'm not used to running a temp a week into an abx course (not that 99.0 is really even considered a real temp).

So, I called my doc tonight and left her a message. I go to see her next week, but I'm concerned that she's going to want to put me on a PICC.  I know that other cysters and fibros have these routinely and probably don't even bat an eye when they're told they need one, but they still scare me.  I've only had 2 and each one has made me feel so miserable for the first week or so of the treatment.  I'm trying to find that balance between letting my body handle the sickness and letting IVs help me.  I'm just unsure what to do this time around....I don't know if my fear is prohibiting me from seeing the whole picture or not.

All I know is I'm day 7 into my abx, my heads hurting, and I'm exhausted. I'm also blowing out green snot, but I do that on pretty regular basis anyway (ever since my sinus surgery). frustrating.  I guess we'll just see what the doctor has to say.

Monday, October 3, 2011

The Weekend Recap

Happy Monday all!

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

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

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

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

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

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

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

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

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

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

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

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

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